Today is yet another hard day for us. March 19th, 2014 was Jude’s due date; our precious baby Jude, our fourth child that we know absolutely nothing about. We are so sad that we have to wait until heaven to meet him or her. We are comforted by the fact that Jude is with Lucy and Pax and most of all, Jesus. We are thankful that Jude was not stillborn, and we think that God might have been sparing us from that deep pain by taking Jude early.
When we found out that we might be experiencing a miscarriage, we cried out to God to spare this baby’s life. I sat down with my journal and my Bible and begged God to speak to me, to comfort me or prepare me for whatever was coming. I flipped back to a special promise that God had given me a few weeks after Lucy died-
It was about a month and a half after I lost Lucy. I was still bleeding heavily (6 weeks later, which isn’t normal) so I had to go back to the doctor to have everything checked out. This meant sitting in the waiting room full of happy pregnant women. That morning I woke up and wanted to die, I was so overwhelmed with sadness. To get to my OB’s office you have to walk right past the newborn nursery at the hospital and see the tiny, beautiful newborn babies. I literally didn’t know if I could do it. God reassured me and I felt like He said very clearly, that He was going to tell me something important at my doctor’s appointment. I doubted that anything good could come out of this appointment. When I sat down in the waiting room I looked up and there was a woman from my church who was pregnant and due about a month after Lucy. She was there to find out the sex of her baby and was thrilled. Her face was alight with joy and excitement and innocence. How different our two ultrasounds were going to be that day. I died inside and begged God, “Help me, Jesus, help me. I can’t do this. I want to die, Jesus, help me.” He said, “Look at Psalm 21. It’s for you. I will do this for you.” I was skeptical, but I turned to it right then in the waiting room and read this (I have replaced “The King” with my name, since it was a personal promise for me):
O Lord, in your strength Bethany rejoices, and in your salvation how greatly she exults! You have given her her heart’s desire and have not withheld the request of her lips.For you meet her with rich blessings; you set a crown of fine gold upon her head.She asked life of you; you gave it to her, length of days forever and ever. Her glory is great through your salvation; splendor and majesty you bestow on her. For you make her most blessed forever; you make her glad with the joy of your presence.For Bethany trusts in the Lord, and through the steadfast love of the Most High she shall not be moved.
How sweet is my God to give me that promise right then when I needed it most? It brought me so much peace and it got me through that horrible doctor’s appointment. They had to do an ultrasound to make sure nothing was left in my uterus. There in front of me was my empty womb where Lucy should have been. I turned my head to look away and my eyes landed on the stack of onesies they give out when you find out the sex of your baby. Heartbreak. I thought about the promise God had just given me and it got me through.
So, when I sat down and flipped back in my journal to read that promise I noticed the dates. Do you know when God gave me that promise? March 19th, 2013. Baby Jude’s due date was March 19th, 2014. My heart relaxed with relief because I thought surely this was a sign that this baby would survive. But Jude didn’t make it and our hearts were completely broken. I felt silly for hoping.
Now, here we are on March 19th, 2014. No baby Jude, no baby Pax, no baby growing in my belly, no 8 month old Lucy. But I have the amazing promise that God gave me one year ago today. He will give me my heart’s desire and will not withhold the request of my lips. What have I requested, again and again and again? Lord, give me more children, Lord heal our hearts, Lord be glorified through our pain. He will do it.
This is what is sweet about this promise to me. The thing I have asked God for the most this past year is LIFE. Life for Lucy, life for Jude, life for Pax, more little lives for me to mother. And He promised me specifically:
She asked life of you; you gave it to her, length of days forever and ever.
Lucy, Jude and Pax have been given life, length of days forever and ever, and so have I. I get to have my babies forever. Over the past year I have often wondered if God’s blessings have just run out for me. He blessed me so much for the first 32 years of my life, maybe all He has left for me is suffering. But on this day last year He promised me specifically-
You have given her her heart’s desire…you meet her with rich blessings…for you make her most blessed forever; you make her glad with the joy of your presence.
And yet another beautiful contrast- Since losing Lucy I have felt so LOW- embarrassed, ashamed, sad, hopeless…but with these verses God has promised to bestow on me glory, splendor and majesty. One day He will set a crown of fine gold upon my head. I am trying to focus on this promise today instead of the painful emptiness that should be filled by my sweet little Jude. Would you pray for us today? We are so very tired of grieving and hurting, but we are still trusting.
For Bethany trusts in the Lord, and through the steadfast love of the Most High she shall not be moved.
On Monday I had my first MCA scan at 14 weeks and 1 day. We started MCA scans at 14 weeks with Callum as well and with Nora we had the first MCA scan at 15 weeks. I was very nervous leading up to the scan and expected there to be no heartbeat. I kept imagining how I would tell the siblings that their baby had died and wouldn’t be coming home. Thankfully we saw a good, strong heartbeat right away. The ultrasound tech measured baby and of course (s)he was measuring about a week or two ahead. Baby was super active and there was no extra fluid collecting around organs (ascites) so that was encouraging. The PSV numbers ranged from 20-22. According to this calculator, that would put the MoMs between 1.04- 1.14 which is in the normal range and does not indicate any fetal anemia. Dr. Moise reminded me that even severely anemic babies at this early gestation don’t show signs of hydrops or ascites so the lack of fluid build up doesn’t necessarily mean baby isn’t anemic. He also reminded me that there are technically no accurate PSV values below 18 weeks gestation that have been researched so he doesn’t know how accurate the calculator is before 18 weeks. There was one study done in Thailand in 2007 where they gathered data to showed normal PSV values for babies as early as 11 weeks gestation. But their MCA/PSV values differ from the values that we use now at and after 18 weeks, so I don’t know how confident I feel trusting these values either. Here is the chart of PSV values from the Thailand study done in 2007:
The values are quite different from the ones shown on both of these commonly used PSV calculators:
For instance, these are the PSV values that come to a 1.5 MoM at 18 weeks according to each calculator:
Thailand study: 1.5 MoM at 18 weeks = 30.9 PSV
https://medicinafetalbarcelona.org/calc/: 1.5 MoM at 18 weeks = 34.5 PSV
http://perinatology.com/calculators/MCA.htm: 1.5 MoM at 18 weeks = 34.9 PSV
According to the Thai study, my baby’s MoM at this last scan was just under the 1.5 cutoff. According to the Fetal Barcelona calculator, my baby’s MoM was 1.14 at the highest. I think Dr. Moise prefers the Thai study since it has data backing the numbers, but he goes with the perinatology calculator at 18 weeks and up (which is different from the Thai study numbers.) This has made me very uneasy since we basically don’t know if the baby is anemic or not. One thing I do know though, is that Callum’s PSV numbers were slightly lower than this baby’s at 14 weeks. His numbers ranged from 15-20, so that makes me worried that this baby is indeed Kell positive.
One good bit of news is that my titer is still much lower than it was before my treatments started. At the beginning of the pregnancy my Kell titer was 2,048 and after my 3 rounds of plasmapheresis it was down to 128 (several weeks ago.) They just tested my titer again on Monday to see how high it is now and it was 256. That is much better than 2,048. It’s still a very high Kell titer, but I feel encouraged that it hasn’t bounced back up into the thousands. That has given me a small bit of hope this week. Here is a picture of our beautiful baby at 14 weeks:
Please keep praying for us and for our baby and the medical staff treating us. They are going through a lot of extra stress as they try to meet the needs of their patients while dealing with the COVID-19 pandemic. They also have families of their own who they want to keep safe. It’s a hard time for everyone, especially those who are responsible for women and babies already in the middle of high risk pregnancies. I appreciate them so much. My next MCA scan is on Monday in Atlanta and we are still waiting to hear the results from the baby’s antigen test. We will update everyone as soon as we know!
Losing a baby turns your world upside down. Everything feels wrong. There’s nothing right about a baby dying before her parents. One of the hardest things to understand is why people like drug abusers and child molesters get to have healthy babies but my babies die. Sometimes, I feel like I’m being punished for my obedience to God and they are being rewarded for their sin. I know that is not true, but it sure is what it looks like from my perspective.
I have heard so many other baby-loss moms say the same thing. It’s even hard to see other parents doing things we don’t agree with because we think, “I wouldn’t do that with my baby. I would do it a better way. Why do they get a baby and I don’t?” It is infuriating to see a pregnant woman smoking or a mom slapping her kid around in a store or to see horrible things on the news about parents abusing their children; their healthy children that they got to keep. I’ve seen people lose their faith over this. “How can God take my baby, who would have been treasured and loved and well taken care of but then He gives babies to people who hurt them, abuse them, kill them; people who can’t take care of them.” Some women who struggle with infertility have tried everything they can think of to get pregnant. Some have tried for years and they sacrifice a lot to be as healthy as possible, but still have empty arms. When they see somebody accidentally get pregnant and complain about it, it feels like a slap in the face. I’ve heard them say, “Maybe I should just give up trying to be healthy, start smoking and get really drunk, because that’s how so many other women get pregnant.”
I have been working through these questions since Lucy died and even more since I lost Jude. I know that I don’t deserve a baby more than any other person because I am sinful, just like them. My sins may be different, but I am still a sinner. What bothers me is that the BABY does deserve a better situation and a better Mama. Every baby deserves to be loved and well taken care of. I have a home full of love and laughter and any baby in my house will grow up knowing God’s love. We have a baby-shaped hole in our family that aches with the emptiness. That is why it’s so hard to see crack heads getting babies. It just doesn’t make sense.
I think all these questions have a lot of very deep, theological answers that I’m not going to even try to conquer. I can only write about my thoughts and experiences and this is what I think:
I am not God and luckily, I don’t have to figure it all out. One day I will know it all, but not today. All the abused babies, the neglected babies and the parents who don’t care- they are not my burden to carry. That is God’s burden, this is His world, and I can release it all to Him. They are all His responsibility, just like the baby-shaped hole in my life is His responsibility too. He will take care of it all and He will take care of my family and me.
Another comforting thought is that my babies are safe in heaven, living in perfection. I wish they were in my arms, but they are waiting for me, cozy and loved and happy. I don’t have to worry about them. They are not being abused or neglected.
When I feel jealous of someone who got a baby out of a bad circumstance, I ask myself, “Do you really want her life?” And the answer is always, “No.” I don’t want her life and I don’t want her baby.
I don’t know what that woman has gone through. Every person has a different story, different hurts and different experiences. What I see is a very small piece of the whole picture. I can’t judge her by what I see because it’s not the whole truth. I also can’t see the future. Maybe God will use that baby’s pain to help others or to accomplish beautiful things. I don’t see what He does, so I shouldn’t mourn the small part of the picture that I am seeing.
Anger is part of the grieving process. All of the emotions that come with grief are so overpowering that you just have to feel them to get through them. A lot of my grief anger has been directed toward the irresponsible parents or at God for allowing such “injustice.” Some of the anger has been misplaced. It has helped me just to recognize that a lot of the anger is coming from the grief of not having my baby in my arms–not necessarily from the fact that crack heads get babies. Eventually it WILL fade.
When I feel swamped with jealousy and anger and confusion it always helps to pray for that other lady and her baby. It goes against how I’m feeling, but when I force myself to pray for them I feel so much better. I also pray for God to let me see them the way He sees them. I pray for God to fill me with His love for them because I’m all out. Usually, I am surprised with the compassion and pity I feel for the woman after I pray this prayer.
Ever since Lucy died I have felt like there is a war going on in my head. Satan is spewing his lies at me constantly, especially when I’m feeling depressed and my arms feel leaden with emptiness. That’s when he strikes. He points to what I see and says, “Look! God trusted her with a baby, but He wouldn’t trust you with one. She deserves a baby more than you. God isn’t good. He wants to hurt you and He wants to reward her for her sin.” But what does God say? He reminds me that He is good and He loves me and He is a just God. He reminds me not to focus on the tiny piece of the puzzle that I can see. He’s using this painful, dark piece of my life to make a beautiful, perfect picture that will one day stun the eyes and swell the heart. When He’s done with the whole picture, I will step back and say, “OH! So that’s what you were doing. Thank you, thank you, thank you. I love it!”
Look at the cross. Think of all the people who went home that night who saw Jesus Christ dying on the cross, which is the greatest act of wisdom and salvation and grace and love in the history of the world and who went home and lost their faith. Do you realize how many people looked at Jesus dying on the cross and because they couldn’t understand it they said, “I don’t even believe in God anymore. I don’t see what good God could be bringing out of this.” So they looked right in the face of the greatest thing God ever did and said, “I don’t understand it, therefore my faith is undermined.”
-Timothy Keller
I am choosing to trust God to make something beautiful with my loss and my pain. I have to relax in the fact that I am not God, I don’t know everything and I am not in control.
I think Satan wants us to be jealous of other moms with their babies. I think he wants us to be eaten up with bitterness and anger and hate. Let’s choose love. Let’s fight for love and pray for those other parents and their babies. What would our babies want? Let’s make them proud by living lives full of love.
I Corinthians 13:4-7, 12
Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things…For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.
I have had this blog post mostly written and sitting in my draft folder for months now, waiting to be published. It weighs on me and I think about it often, rewriting certain sentences in my mind, adding and editing mentally while I go about my tasks during the day. Mostly, I want the whole post to be saturated with forgiveness and grace, but also truth. The doctors I write about are real people, and I don’t want to attack their character or publicly shame them for mistakes they made. What if blog posts were written about me every time I made a mistake? What if I had a job where my actions had life or death consequences? That would be so difficult. And these doctors have done some truly wonderful things for me, like the amniocentesis and pushing the insurance company to cover treatments during my pregnancy with Nora (before transferring to Dr. Moise.) But truth is incredibly important and I feel deep in my heart that lives could be at risk if I don’t share the truth. I feel a heavy responsibility to protect families from experiencing what our family has experienced. I have forgiven the doctors at UAB for their mistakes. I forgive them over and over again when my heart breaks yet again for my girl and I forgive them again when I run through the events leading up to her death for the hundredth time. The one person I struggle to forgive the most is myself. As a mother it is my job to protect my children and I feel like I failed Lucy in the worst way, even though I really did try my best at the time to save her. I just didn’t understand the disorder enough back then. I was confused and scared and scrambling around grasping for information about anti-Kell antibodies (which was very hard to find.) I didn’t know the treatment options available or the proper monitoring protocols. I thought I could trust my MFM specialists to know all of these things and I placed my daughter’s life in their hands. There was so much I didn’t know when I was pregnant with Lucy in 2013. But I know now, and I cannot quietly sit by and leave other babies to Lucy’s fate. Hopefully I can spread the word and get the right information out there to protect families in Alabama dealing with alloimmunization and HDFN.
A couple of weeks before I gave birth to Callum, I finally had my follow up appointment with the MFMs at UAB hospital to discuss what happened with Lucy. After Lucy was stillborn, I scheduled a preconception appointment at UAB to discuss everything that happened during the pregnancy and her autopsy results, placenta analysis and blood work results. One of the head MFMs called me a few weeks after Lucy died and said he thought I had had a fetal maternal hemorrhage and that was the reason we lost Lucy, not just the anti-Kell antibodies. He said there was no reason for me to have the follow up appointment and he encouraged me to cancel it. I was ecstatic that my antibodies weren’t necessarily to blame for Lucy’s death (supposedly) and I canceled the appointment like he suggested. This meant that I never got to discuss what happened during my pregnancy with Lucy or go over the decisions that the MFMs made. No one was held accountable. I had no idea if they learned anything from my experience. It haunted me over the years and the questions I had for the doctors just bounced around in my brain that whole time, unanswered.
UAB is good at many things, and even the MFMs at UAB might be great at treating common pregnancy complications. But when it comes to maternal alloimmunization their protocols are out of date, possibly putting unborn babies at risk. They start MCA scans (the special ultrasound that checks baby for anemia) at around 22 weeks even with patients who have critical titers. This was their plan for Lucy, even though my Kell titer was 1,024 (critical titer was 8 at the time.) I asked them many times during my pregnancy to do an MCA scan to make sure Lucy wasn’t anemic. They refused over and over again. It is a non-invasive, quick ultrasound and it is the only noninvasive way to check the baby for anemia. Even while they were doing a level II ultrasound at 16 weeks, spending an hour with the ultrasound wand on my belly, when I asked them to please do the MCA scan to see if she was anemic they wouldn’t do it and they missed the anemia that day because of it. The day after I gave birth to my lifeless daughter, I asked Dr. O if they would change their protocols and start scanning women with critical titers sooner now because they saw what happened to Lucy. He said, “We don’t change protocols just because of one baby.” Naively, I still thought that surely they would have learned to be more cautious when treating other alloimmunized women because of what happened with Lucy. That was one of the only thoughts that gave me comfort after Lucy died. Maybe other babies would be saved because of Lucy. But about a year or two ago I was contacted by another Kell mama in Alabama, and I encouraged and helped her through her pregnancy. To my horror, even though her titer was well over critical, the MFMs at UAB told her she would have her first MCA scan sometime between 20-24 weeks. It was apparent from her experiences with them that they had changed nothing after losing Lucy. After realizing that, I knew I had to meet with them to discuss everything that happened with Lucy and urge them to treat this disorder more seriously. If they had updated their care practices after Lucy died, I would not have felt compelled to have this meeting with them. By the way, women with critical titers are supposed to have their first MCA scan between 16-18 weeks to make sure the fetal anemia is caught in time to treat. Nora had her first MCA scan at 15 weeks and Callum had his first MCA scan at 14 weeks. Fetal anemia is only treatable if it is detected.
So, I met with the head of the MFM department, Dr. D and one of the main MFMs who handled my pregnancy with Lucy (Dr. O) a couple of weeks before giving birth to Callum. I really appreciated them agreeing to this appointment since it had been over four years since Lucy died. I can only imagine how many patients they had treated in the previous four years, so I’m actually surprised that they remembered anything from my pregnancy (and maybe they couldn’t remember everything which is why some responses were so vague?)
I know it must have seemed strange to them that I would want to come in four and a half years after losing my baby to discuss what happened. They were polite and respectful and I know it was probably hard to do that during this conversation. The one thing I appreciate most is that Dr. O referred to my daughter as Lucy. He didn’t call her “the baby” or “fetus” he called her Lucy and that meant the world to me. I wish other people in my life would just call her Lucy and say her name like they say my other children’s names. It was unexpectedly refreshing and I appreciate him doing that for me.
Unfortunately, I left the appointment feeling discouraged, disappointed and depressed, but also more determined than ever to keep fighting for babies like Lucy, Nora and Callum. Where do I even start? The doctors did not take any responsibility for what happened to Lucy. Many of my questions were not answered in the way I hoped they would be; some weren’t answered at all. I was hoping that the doctors had actual medical reasons for the choices they made regarding my treatment. I think that would have given me some peace. For example, when I asked, “Why did you wait a whole week to scan Lucy after the IUT, especially since her hematocrit was 6?” Pause….”Well, that’s just what we do.” Another example, “When I didn’t feel Lucy move again after the IUT and I came into labor and delivery a few days later, why wouldn’t you do an MCA scan to check her for anemia even though I asked over and over again for one? Why was I sent home? She was dying.” They said something about MCA scans possibly being inaccurate after an IUT, but they didn’t know why I was sent home. They just didn’t have an answer. If they had listened when I insisted something wasn’t right and she wasn’t moving, and checked her anemia levels then they possibly could have saved her.
When I asked, “In the past four years since Lucy died, what has UAB done to ensure that this doesn’t happen to another baby?” They couldn’t tell me. I was given a vague response about how what happened to Lucy was very rare and most women don’t have a titer as high as mine. I talked about how when I came back with my second Kell pregnancy, the MFM told me I should just hope that the baby was Kell negative and to come back at 16 weeks for an amniocentesis. I showed them a picture of Nora and said that if I had trusted their expertise and gone with their treatment plan, she would be dead today. They had nothing to say, except, “Well, maybe she would have survived without the plasmapheresis and IVIG? We don’t know for sure.” “But you were willing to take that risk with my daughter’s life, even after seeing what happened with Lucy?” Silence.
Both doctors remained determined to stick with their MCA start time of about 22 weeks for women with critical titers. I tried explaining that a lot of babies would not be alive by 22 weeks if they waited that long before being checked for anemia, but they disagreed. They said there are no specific guidelines set by ACOG saying when doctors HAVE to start MCA scans so they usually go case by case and decide when to scan based on each specific woman and her history. I explained that this is exactly what terrifies me since with my specific case, they saw that I had a Kell titer of 1,024 and decided that the best course of action would be to start scans around 22 weeks. One doctor spoke up, “Well we have learned since treating you that sometimes even in first sensitized pregnancies, babies can be affected earlier than 22 weeks if the titer is very high and the woman has anti-Kell.” So I asked him if a woman came in today with my exact situation, (first sensitized pregnancy, anti-Kell titer of 1,024) what would the treatment plan look like? The doctor said they would not suggest plasmapheresis and IVIG (the treatments that saved Nora and Callum’s lives) but “now, we would suggest starting MCA scans as early as 18-20 weeks.” This is the most ridiculous thing since Lucy died because they caught the anemia too late, even with a scan (that I basically forced them to do) at 17 weeks and 6 days.
I won’t go through all of my specific questions and their answers. I think the most unsettling thing about the whole appointment was how nonchalant they seemed about it all. I tried to convey, somehow, with my inadequate words how important Lucy was to us, and how their choices had impacted our family forever. I told them I would have rather died than have to live without her. I would have gladly taken her place if I had been given the chance. How could I explain how precious my baby girl is to me? I just sobbed. My mom told them that people trust UAB, we trusted UAB with our baby, and they need to take that responsibility seriously. I told them they had so many chances to save Lucy and they let her down over and over again. They said nothing. No apology, no promise to protect other babies, no real change. I’m guessing they decided beforehand not to admit to any wrongdoing during our conversation and they clung to that fiercely.
When I said it seems like UAB tries to do the least amount of monitoring possible, instead of being extra cautious with these little lives, they did not deny it. When I said, “Many women ask me for MFM recommendations in Alabama. Some ask specifically if I could recommend UAB. I always wish that I could recommend UAB but as far as I know, I can’t because I don’t think their babies would be safe here. When they ask me if they should go to UAB for treatment, what should I tell them?” Silence…and a shrug of the shoulders. Right at the end of the appointment when we were getting up to leave, Dr. O did say that Lucy was important to them and she had affected them in some ways. He just couldn’t tell me how they have improved and I haven’t seen any evidence of that. One thing he did agreed to do was scan a woman with a critical titer before 22 weeks if she specifically asked for and insisted on the MCA scan. But how is a woman supposed to know she has to request this type of scan in order for her baby to receive the right monitoring? The MFMs are the ones who should be providing the right care even if a mother doesn’t insist on the specific tests by name. I told them that many hospitals all over the world start MCA scans by 18 weeks for women with critical titers. Dr. O asked which ones but I didn’t have the names of the actual hospitals on hand. He said if I gave him a list of other hospitals and practices that start MCA scans by 18 weeks then he would consider changing their policy. I promised him that I would.
I went in to this appointment giving these MFMs the benefit of the doubt. I was hopeful that maybe I had just projected my grief of losing my daughter onto them and that is why I thought they had given us such inadequate care, but they only confirmed what I had thought. They do treat alloimmunization/HDFN with nonchalance and they are resistant to change, even if it means babies might die.
Here is my warning: If you are pregnant and you live in Alabama and you found out that you have tested positive for anti-Kell antibodies, or anti-D antibodies, anti-c, anti-E, anti-jka, etc. do not trust UAB to protect your baby’s life. From my experience and my observations, I can only conclude that they will not provide adequate monitoring or treatment and your child will be in danger under their care.
From my experience, the best care for women facing alloimmunization can be found outside of the state of Alabama. Dr. Thomas Trevett in Atlanta is amazing and so is Dr. Ken Moise in Houston. Those are my two recommendations if you want phenomenal care for you and your child. It is so worth the drive. I’m sure there are also other MFMs out of state who know how to properly treat alloimmunization/HDFN.
It sounds ridiculously dramatic, but as I left that appointment at UAB, I had the very real sense that I was walking out of a dangerous place, and I wanted to run to get away. I placed my hands on my swollen belly with my healthy kicking baby boy inside and thanked God that my son was safe. I left that appointment in awe of Dr. Trevett and Dr. Moise, wishing I could hug them and express my deep gratitude for them. I think that was the moment that I knew Callum’s middle names would be Joseph, after Dr. Moise and Thomas, after Dr. Trevett. They respect the trust that we put in them to protect our children. They take every step possible to provide the best monitoring and treatment for their patients. They truly care about our babies. I am so glad I left Alabama for Nora and Callum, and I am devastated all over again that I stayed at UAB with my precious Lucy. I just had no idea. What I would give to reverse time and leave the state for better care during my pregnancy with Lucy.
A couple of months after my appointment at UAB, I sent Dr. D and Dr. O a list of 57 different hospitals and medical practices around the world that start MCA scans by 18 weeks, including a real life example of a woman treated at each hospital. I included the patient’s initials, her antibody, her titer and when they performed her first MCA scan. Dr. D replied,
“Thank you for your continued interest and info. We are in the process of rewriting our guidelines and plan to evaluate MCA doppler in the second trimester (16 -18 weeks) in appropriate patients. I’ll let you know our final pathway.”
This felt very promising! I still have not heard back from them, but if they decide to update their protocols I will definitely come back and update this blog post with their improvements. Until then, I strongly urge you to skip UAB hospital if you are dealing with alloimmunization during pregnancy and find an MFM who will treat your pregnancy with caution and expertise. Or, you could have your basic scans done at UAB and have a more experienced MFM (such as Dr. Trevett) on standby to perform any IUTs needed during the pregnancy. With a little urging, the MFMs at UAB will collaborate with other MFMs for your care.
One last thought: When I left my appointment I felt so incredibly defeated. My grief over my daughter’s death just swamped me like a big wave. It felt like she meant nothing to them, like her life was worthless. It gutted me all over again to think that her death was preventable if only I had known then what I know now. And the fact that the people who should have saved her but didn’t, had just denied their role in her death made it hurt even worse. But that morning before my appointment my mom had shared this verse with me-
Lamentations 3:57-59 You came near when I called on you; you said, “Do not fear!” You have taken up my cause, O Lord, you have redeemed my life. You have seen the wrong done to me, O Lord; judge my cause.”
And that verse came to mind as I drove away from UAB hospital. None of this was out of God’s control. UAB might have failed my daughter but God did not. Even though I can’t trust UAB, I can absolutely trust God. And even if my daughter’s worth was lost on those doctors, she was intricately woven together by the Creator of the universe and He treasures her. God desperately loves Lucy even more than I love her and that gives me peace. And the injustice done to Lucy and me? God sees the wrong done to us and He will judge our cause. I cannot force them to see Lucy’s worth or to be accountable for their actions but I can hopefully protect other babies in Alabama from experiencing what I went through.
Well, we went in for Callum’s seventh blood transfusion on the Friday before Thanksgiving and ended up leaving the hospital without one! When we arrived that morning for the transfusion they inserted his IV and had his blood drawn to check his levels and we were happy to find out that his levels had gone up just a little bit on their own! His hematocrit and hemoglobin the Monday before had been 25.7 and 9.1 and on Friday they were 26.6 and 9.3. It was the first time in his life that he had brought his counts up without a blood transfusion so we were elated.
His hematologist checked his blood for my antibodies and it came back completely negative! I was surprised by how emotional I felt when he told me Callum’s antibody screen was negative. My baby was finally free from my dangerous antibodies for the first time in his life. He can now make his own blood and it won’t ever be destroyed by my antibodies again. It has been a long hard road to get my boy to safety. We did it! They removed his IV and sent us home without a transfusion.
We came back a few days later to check his counts one more time right before Thanksgiving and his numbers had BARELY gone up. His hemoglobin was the same (9.3) but his hematocrit had gone up from 26.6 to 27 so we were cleared to leave the state and visit family in South Carolina for Thanksgiving. We had such a great Thanksgiving with everybody. Callum’s Grandparents got to hold him for the first time and his SC aunts and uncles got to hold him for the first time without monitors and wires attached to him.
Yesterday I drove the hour to Children’s of Alabama for the last time to have Callum’s blood checked by the hematologist. His levels had gone up again on their own! His hematocrit was up from 27 to 28.4 and his hemoglobin was up from 9.3 to 9.6. We were officially released from hematology and we never have to check his counts again!! Thank you God, for this amazing gift.
Driving home from the hospital for the last time with my healthy boy in his car seat was redemptive and beautiful but bittersweet. This is how Lucy’s story should have ended. If she had been given the right monitoring and treatment like Nora and Callum, then I would have driven home one day in 2013 with my healthy baby girl in her car seat and our lives would have been completely different. Our family would be intact, our hearts would not be irreparably broken. Nora would grow up with a sister. Liam and Asher’s childhoods would not be marred by this tragedy. So many shoulds and woulds, and though I rejoiced that we were done, my grief noose tightened just a bit as I drove home with my healthy rainbow boy. But I also think about the other babies who might not be alive if it weren’t for Lucy and this blog. How many other lives would be devastated by tragedy if Lucy had lived? I’m reminded of a song I heard one day while driving to Atlanta for an ultrasound. It’s by Judah and the Lion and the lyrics bring me to tears every time I hear it.
And I’d take it all back, take it all back, take it all back just to have you.
Just typing the words makes me tear up. The words surge all the way down into this deep part of my soul, the part that still desperately wants to save my daughter. I think about the question, “Would I take it all back just to have my baby Lucy?” My mother heart would do anything to have my daughter back, to keep her alive. I would take it all back just to have her. But I also know that I couldn’t possibly make that choice knowing now what her life and her death have meant for other families. I am comforted knowing that God is in control of every little detail of my life and Lucy’s life and I don’t have to make these impossible, hypothetical decisions. But I still feel a deep ache knowing that Lucy’s story could have ended like Callum’s and the treatment that could have saved her was out there all along. Even with such angst in my heart about what happened to Lucy, I am flooded with relief and joy and gratitude knowing that Callum’s story will end differently.
Well, Callum definitely won’t be going home this weekend. He has had a few setbacks so I’m trying to readjust my timeline and my expectations on when we can bring home our baby. His hematocrit dropped to 25, which isn’t too bad (they usually transfuse between 22-24) but he wasn’t feeding well, he was having some oxygen desats and his retic was still super low (meaning he isn’t making his own blood yet) so they decided to go ahead and do the blood transfusion. They put an IV in his foot which made me so sad because it looked really painful. Since it took a while for the blood to be available I went back to the RMH to sleep and when I came back in the morning he had an IV in his hand because the foot IV didn’t work. He had just finished having his blood transfusion when I got there and his skin looked so pink and healthy.
He was awake and hungry so I breastfed him and he took a whole feeding without falling asleep, which is awesome! A few minutes later I heard him filling up his diaper so I decided to change him. When I opened up his diaper there was quite a bit of blood mixed in with the poop. The doctor came to look at it and she said he could either have a dairy allergy or he could have something called Transfusion Related Gut Injury (TRAGI) which can sometimes happen in micro-preemies who have blood transfusions. He’s definitely not a micro-preemie so we are hoping it is just a dairy allergy. The timing, though, suggests that it might have something to do with the blood transfusion. The doctor is x-raying his abdomen right now to try to get answers and I’m cutting all dairy out of my diet just in case. They are putting him on gut rest until they can figure out what is going on. Callum’s ferritin (iron) levels are really high on top of all of this. Before the blood transfusion his ferritin level was 1,216 and the normal range is 25-250. Since he was given adult donor blood which has high levels of iron in it, his levels are probably much higher now. They are running liver function tests to see if his liver is being affected by all of this extra iron in his body.
It is hard not knowing how much longer we have to live here in Atlanta separated from our family and our normal life and our sweet baby Callum. And can I just say how absolutely unnatural and weird it is to have a NICU baby in the first place? It’s unnatural to give birth and then never touch or hold or even see the baby for hours after that. It feels wrong for my baby to go through painful procedures without me there with him to comfort him. I show up and he’s suddenly got an IV or he’s had a vaccination, etc. and I wasn’t there to hold him when he cried. It’s completely unnatural to ask a stranger if I can please hold my baby or change his diaper or feed him. I’m his mother. I should be the one giving permission to others if they want to handle my baby. Nora still hasn’t even met Callum and Josh has seen him for maybe a couple hours in the past two weeks. All of this feels off but thank goodness it is temporary. Part of me feels incredibly privileged to even have a baby in the NICU. The one and only dream I ever had of Lucy after she died was of her in the NICU. I was going to visit her and I walked into the hospital, up the elevator to the next floor and down a long hallway to my baby Lucy’s crib. She was so sweet with chubby cheeks and brown hair and oh, I loved her so much. I was so happy to be with her in that sunny little room. Then I woke up to my nightmare…swollen, milk filled breasts and empty arms and a permanently mutilated heart. I was gutted. I begged God not to ever, ever let me dream about her again because I couldn’t stand waking up to my life. I will just wait until heaven. Thankfully He heard my pleas and hasn’t ever given me a dream about Lucy again. It would be too painful. But after I had that dream I struggled any time I heard a NICU mom complain about her living baby who was still in the NICU. I envied her. Now I get to be one of those moms with a living baby in the NICU and I am so, so grateful (and yes, I still complain about the hard stuff.) Even though it is inconvenient, it is stressful, it is exhausting and it feels unnatural, I know we are very blessed to be in this situation. Do you know what is truly unnatural? A mama saying goodbye to her baby for good. A mama living the rest of her life without her child.
So, yes, it is hard and we are exhausted but we are so thankful.
Please continue to pray for our baby Callum to get over whatever is hurting his belly, to get better at his feedings and for his blood levels to normalize. We appreciate all of you so much!
I had my 36th ultrasound yesterday to check on baby one last time before the IUT on Monday and to check his weight. The weight estimate is very important because the doctors use it to decide how much sedative/paralytic to give the baby before the procedure, and how much donor blood to give him during the transfusion. As usual, he’s measuring ahead (which we love!) and weighed 4lbs 10 oz at 31 weeks 6 days. I think that is about the average weight of a 34 week baby. The bigger he is, the easier the transfusion is for Dr. Trevett and the better off baby will be when he is delivered early. There were no signs of hydrops or distress during the ultrasound but baby was definitely the stillest he’s ever been and his MoMs ranged from 1.5-1.72 so that made me anxious. They drew my blood for the normal pre-IUT blood work and then I was on my way home to Alabama, just barely missing Atlanta rush hour traffic. About and hour later I got a call from the hospital. They told me I needed to turn around and come back because they had just received my blood results and there was a problem. It looked like I had developed another antibody, possibly the Le(a) antibody, which I know absolutely nothing about. They needed to draw more blood and do more tests to clarify what was going on. So, I turned back around, drove back to the hospital and had my blood drawn again. I won’t know more about this until Monday but I’m hoping that I didn’t really develop another antibody. The reason they do blood work before every IUT is because they have to check to make sure I haven’t developed any new antibodies. They have to carefully match the donor blood to my blood before every IUT because if they accidentally gave the baby blood that doesn’t match my antibodies, my body could destroy the baby’s blood right after they give it to him. Anyway, it was a long day and I’m thankful to be home with a day to relax with my family. Well, you know, do dishes, cook meals, do four loads of laundry, pack for Atlanta, clean the house, diffuse one thousand toddler melt downs and all of the other things a “relaxing” day with three young children entails. Tomorrow, my mom, Nora and I will drive back to Atlanta and stay through Tuesday for the IUT. Please pray that the baby is safe until then and that the procedure goes well. It’s stressful to feel his kicks slow down as he gets more anemic every day leading up to the IUT. Here’s our sweet boy during yesterday’s ultrasound-
I also would love for you to pray for a very important appointment I have coming up next week. The appointment actually doesn’t involve my current pregnancy. It is about Lucy. I’ve been wanting to make this appointment for about four years now and I finally worked up the courage a few weeks ago to schedule it. The date has crept up on me and now it’s just a few days away, August 30th. Even though I’ve been wanting and needing to have this appointment since Lucy died, I’ve also been dreading it.
The appointment is at UAB Hospital (in Birmingham) with the head of the MFM department to discuss everything that happened with Lucy. We will also go over all of the test results that I never saw like her autopsy, my placenta analysis, amnio results, etc. I have a lot of questions that I’ve never been able to ask since I never had this appointment after Lucy died. Usually, after a baby is stillborn the doctors set up a “preconception appointment” for several weeks later to discuss what happened with the baby and to go over any test results and questions the parents might have. They also discuss future pregnancies and what the treatment or monitoring would look like if the parents did want to try for another baby (thankfully we won’t be discussing that.) I had scheduled my preconception appointment at UAB after Lucy died, but one of the main MFMs called me about a month after we lost her and told me I could cancel the appointment. He said he had seen my placenta analysis report and decided that I had had a fetal maternal hemorrhage which caused Lucy’s death (other doctors disagree.) He thought we could go on to have another baby naturally so he decided there was no need to have my preconception appointment. I was so overjoyed by this news that I cancelled my preconception appointment, which I now know was a really bad decision. I never got to ask the MFMs about the treatment and lack of monitoring I received during my pregnancy with Lucy (that contributed to her death.) I never saw her autopsy results, or any of the test results or anything. As far as I know, no one was held accountable for what happened or was even notified that a baby had slipped through the cracks left gaping by their hospital’s outdated protocols. I never got to ask them why they “don’t change protocol just because of one baby.” I am curious to know how many babies need to die before they decide that their protocols might need to be updated. Now I just sound bitter, which is not what I want. I hope to get some answers, to better understand the decisions the doctors made, to forgive the mistakes that were made and to make sure that this doesn’t happen to any other babies in Alabama.
Preparing for this appointment and writing down my questions has been emotionally difficult to say the least, but I feel like I have to have this appointment to get a little bit of closure regarding my experience at UAB. I am dreading the thought of going over her autopsy, thinking about my precious baby being cut open. How can a mother bear those thoughts? But the weight and responsibility of protecting other babies whose mothers go to UAB for treatment weighs heavily on me. Nora and this baby boy on the way are my daily reminders of how Lucy’s story could have played out if only she had received the right treatment and monitoring. Please pray that God gives me the strength to get through this appointment and find some peace afterwards. Also pray that the MFM department is humble enough to learn from Lucy and that they change their protocols regarding management of isoimmunized pregnancies.
Yesterday I got the call from Dr. Trevett that I had been anxiously waiting for. I knew right away from the tone of his voice that the results were not good. Unfortunately, our baby is kell positive. Josh’s genes win again. The odds are supposedly 50/50 but Asher, Lucy, Nora and now this baby are all kell positive. We still don’t know whether Liam is or not (I didn’t develop the antibodies until after Asher was born so the boys weren’t in danger.) I was not surprised that the baby was kell positive but I was very disappointed and disheartened. I’ll write some more about what the baby’s kell antigen status means in a minute.
I know you are probably also wanting to know what the baby’s gender is. Since we knew the baby was kell positive we just did a small, family gender reveal with our kids and a few of their cousins at my mom and dad’s house. I made little volcanoes for the boys with baking soda and food coloring and they poured vinegar in to find out whether they’re getting a brother or a sister. Here is the video:
We are having a baby boy! We love our son so much already.
When I first heard the news that I would be having a boy I was completely shocked and to be honest, kind of sad. I really wanted Nora to have a sister on earth and this is definitely our last baby (unless we decide to do foster care one day way down the line.) I wept and grieved deeply for the loss of seeing my daughter with her sister. It reopened my Lucy wound, which is only partially healed to begin with. Obviously, Lucy can never be replaced and I always ache for her; for Liam and Asher’s first baby sister and for Nora’s big sister. But I was hoping that the pain of Nora growing up without a sister would be healed and redeemed here on earth. Now I know that will not happen. I will have to wait until heaven for God to redeem that loss and Nora will grow up with only brothers (which is not a bad thing, it’s just difficult for me because her sister is missing.) I was also worried when I found out I was having a boy because sometimes, boys tend to be more affected by the antibodies than girls. So this boy might have to fight harder to survive than Lucy and Nora, which is scary to think about. I gave myself time to grieve these losses and to get used to the idea of having another boy. Gender disappointment is real and it’s important to grieve and “say goodbye” to the idea of the baby you were expecting/hoping for. That being said, we are not disappointed at all in this baby. We are thrilled to be having another boy and we are desperate to bring him home alive. I remember soon after I found out I was pregnant and I was going through the scenarios in my head, “Kell negative boy? Kell negative girl? Kell positive boy? Or kell positive girl?” and the strong feeling came over me that I really didn’t care in the end. I just loved my baby, whoever he/she was, whatever the blood type, I loved my newest baby completely. That’s the bottom line. I love my son for who he is, testosterone and energy and kell positive blood and whatever else comes with him, I love him for who he is and I’m thankful for this incredible gift from God. I’ve known the baby’s gender for about a month now and at this point, I can’t imagine having a baby girl. I truly am looking forward to having another boy.
Yet again, I am reminded that God is writing this story, not me. He thinks the best thing for us is this little boy which makes me so excited about him. If it were me writing this story I definitely would make this baby kell negative, but God thinks this is best and I trust Him. He has a reason for His decisions. My mom reminded me how many great blessings came out of Nora being kell positive. We learned so much about anti-kell antibodies and the proper treatment and monitoring practices. I’ve been able to help many women and babies with their pregnancies because of everything I went through with Lucy and Nora. We got to live in Houston for five months and meet so many amazing, courageous families who we now call friends. I got to fall in love with some sweet children who are now with Lucy in heaven and I never would have been able to get to know them while they were on earth if Nora had not been kell positive. These people have blessed my life in so many ways. And of course, we got to see a miracle take place right before our very eyes as Nora beat the odds week after week and pulled through again and again. Now she is here, full of life (and full of toddler sass) filling up our world with hope and light.
There are so many good things that came with Nora’s kell positive diagnosis and I look forward to seeing what God is going to do through our little boy.
So, medically speaking, what does it mean now that we know this baby is kell positive? It means my antibodies are definitely attacking him and will continue to attack him until he’s out of the womb. My anti-kell antibodies are specifically designed to destroy my own baby’s kell positive red blood cells. When that happens, the baby will become anemic and will need a blood transfusion in the womb. It is difficult and dangerous to do a blood transfusion on a tiny baby in utero, as you can imagine. The bigger the baby is, the easier it is for the doctors to do the transfusion. The further along baby is, the safer the procedure is because if something goes wrong the doctors can just deliver. If baby boy had to have a blood transfusion right now it would be extremely dangerous since he only weighs a few ounces and isn’t even close to being viable outside of the womb. Lucy had a blood transfusion at 18 weeks and died at 19 weeks because she was losing the battle against my antibodies and she was too young to deliver. If I had been a few weeks further along they would have delivered her and she would have had a chance at life. Thankfully, because of the plasmapheresis and IVIG treatments that I had during my pregnancy with Nora, she did not need her first intrauterine blood transfusion until 24 weeks. We are hoping our boy can make it as far as Nora did before needing a transfusion.
As of right now I am driving to Atlanta (about 3-4 hours one way) every week to do an MCA scan on the baby to check for anemia. If he starts getting close to being anemic we will do scans twice a week and if the scan shows that he is anemic we will go to Houston the next day to be treated by Dr. Moise. Dr. Moise is more experienced treating babies at early gestations for fetal anemia. If the baby gets anemic later on in the pregnancy we will probably stay with Dr. Trevett and let him continue treatment. I am having weekly IVIG infusions in my home with my home care nurse (having one right now as I type, actually.) I will continue these until baby becomes anemic and needs a blood transfusion. The IVIG has side effects that make me feel terrible most of the time on top of pregnancy symptoms so that has been very difficult. With all of my pregnancies I’ve had around the clock morning sickness from about 6 weeks to 20 weeks. I started getting sick at only 4 weeks pregnant with this little guy. The side effects that I struggle with most from the IVIG are nausea, vomiting, migraines, muscle weakness, fatigue and muscle aches (very similar to flu side effects.) I feel extremely weak and fatigued most days and a lot of my mental energy is spent trying not to throw up. I often don’t have the energy to stand up long enough to cook a meal for my family (I try to bring a chair into the kitchen or we end up getting take out, which is normally very rare for us.) Going grocery shopping feels like an impossible feat most weeks, and by the time I’m standing in line to check out I really have to fight not to pass out or throw up while I wait. There is a lot of physical suffering ahead for me and for baby boy and a lot of emotional and financial stress for our whole family. Please pray that our boy survives. All of this is completely worth it for us. He is worth it. None of this is a surprise to us, by the way. We knew before we got pregnant that this would probably be the scenario and we knew what we were signing up for. Our family was on board and our doctors were on board before we even decided to try to get pregnant so that makes us feel incredibly blessed to have such a great support system.
The best news is that baby boy looks healthy so far. Our last appointment was on Monday and baby’s MCA scan showed no anemia so far. There were no signs of hydrops and baby’s heart looked good. He was active as usual and so adorable.
My next scan is on Tuesday, May 9th. They will probably do an in depth ultrasound for the first time to measure baby and check all of the structures of the organs. They will also be doing another MCA scan to check for anemia. Please pray that our son looks healthy and shows no signs of anemia. My little brother is also getting married next week and I REALLY don’t want to miss his wedding. If baby looks anemic on Tuesday I will have to go to Houston and miss my brother’s wedding so pray that baby still looks good. Thanks for supporting us through this tough time and for praying for our baby. Is there any greater gift than knowing other people are praying for my child?
I want to end this post with the verses God gave me for this pregnancy and this child the night after I found out I was pregnant. I struggled throughout the night with anxiety and panicky emotions. Like I mentioned in an earlier post, God brought a verse to my mind and when I heard it and repeated it, all of the voices of fear that had kept me awake for hours were immediately silenced. Right when I heard Dr. Trevett say the words, “kell positive”, God brought these verses to mind again:
Psalm 18:28-36 For it is you who light my lamp; the Lord my God lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall. This God- His way is perfect; the word of the Lord proves true; He is a shield for all those who take refuge in Him. For who is God, but the Lord? And who is a rock, except our God? -the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze. You have given me the shield of my salvation, and your right hand supported me, and your gentleness made me great. You gave a wide place for my steps under me, and my feet did not slip.
Oh Lord, fill my boy with strength. Support him and be his shield. Keep him safe and use him to do great things for you. Let him be a light and a beacon of hope to others. We entrust our son to you.
Oh my baby, how I miss you. Every day, every minute for these past four years I have ached for you. That chamber of my heart that is only Lucy shaped remains empty. I know how your biggest brother Liam feels in my arms, how your big brother Asher feels in my arms and how your baby sister Nora feels in my arms, but I don’t know how you feel and my arms ache for you. A mama’s arms belong around her babies. I wish you could be here to play with your little sister Nora, you would love her so much. Your absence in our family is felt every single day. I see the space where you should be that nobody else sees. I miss you.
I miss you.
It has been four years since Lucy’s heart stopped and mine was irreparably broken. It is a feat, surviving four whole years without your child. I feel like I should be awarded a medal just for still being here, four years later, without her. The beautiful thing about living this life with my God is that He has more for us on this earth than just surviving. The past four years have been the saddest and most difficult of my entire life, but they have also been the most beautiful, the most redemptive, and the most productive years of my life.
As most of you know, when Lucy died I was told I could not have any more babies. It felt like an extra cruel blow because of who God had created me to be. He made me very maternal from infancy. I have always been obsessed with babies. They were the best thing in the world to me. My undergraduate degree is in Early Childhood Education. I was told that a degree in Elementary Education would be more useful so I eventually agreed to go one more semester to also get my Elementary Ed degree, but all I really cared about was getting that Early Childhood degree because I just wanted to teach the babies. My whole life I waited and dreamed about having a baby of my own. I wanted to fast forward time until I held my baby in my arms for the first time. My greatest wish for my life was to have a big family; LOTS of babies. For God to allow my baby to die and then to leave me with a pregnancy condition that would repeat itself and make my pregnancies “fatal” seemed so cruel. It felt like a custom made attack, designed to destroy the most beloved part of who I was.
I couldn’t even look at babies after Lucy died, they physically nauseated me. During my counseling sessions I had therapy for PTSD and had to work through the most terrifying scenarios like, “You’re at the grocery store and suddenly a woman comes around the corner carrying a baby, what do you do?” I remember being on a flight only a couple months after losing Lucy and there was a baby next to me on the airplane. I felt like I was going to have a panic attack. Every sound she made caused a physical pain in my chest. I could not believe how agonizing this adorable baby next to me was. My pain originated from my deep love for babies, especially my love for my baby girl who had been killed by my own body, and the love I had for my future babies who would never exist because of anti-kell antibodies. Every baby I saw reminded me of my dead dreams for my family and my dead daughter. And if I’m truly honest, they represented the lie that for some reason God loved those other parents more than He loved me because their babies were alive. The parents of the baby next to me on the airplane seemed to sense my discomfort. They probably thought I was just one of those adults who gets irritated with loud babies on planes. If only they knew the truth.
If only I knew the truth, that God was not using my tragedies as a custom made weapon to destroy me. God was going to take my little Lucy’s life and my tragedies and He was going to fashion them into a custom made ministry just for me. And guess who God has me ministering to now? Women and their BABIES. Beautiful babies who are possibly in danger like Lucy was. Babies in Pakistan, babies in Canada, babies in Australia and Egypt, babies in the UK and the US, babies in Germany and Israel, Cambodia, Switzerland, Russia, France and even babies right here in Alabama. I get to help babies every single day and it is some of the most rewarding work I have ever done. I get to encourage and empower women who have babies in the womb, women who have babies in heaven, women with babies waiting in their future, women with newborns and women with broken hearts. I love these women, and I desperately love their babies. God uses every single one of these parents who reaches out to me and He uses every single baby to restore a small piece of my broken heart and to restore my hope in Him.
Here I am four years later, and now I am able to look at a baby and see redemption, hope and the greatness of God. Oh the redemption that God has brought through these babies and their moms!
And so, without any more delay, here are some of the beautiful babies that have been helped through Lucy’s story and my blog. Thank you Jesus, for each one of these lives that has been touched by my Lucy’s.
COOPER
CLAIRE
EVA
JESSA JADE
TYLER
JACOB
KRISTIAN (in heaven with Lucy) and MIKAH
JULIA JOY
SAGE (in heaven with Lucy)
KETHRYN
ROSE with big brother and sister Logan and Haven
SHUA, ARI and MOSELLE
LIAM
ELLIE
MILA
MATILDA
LUCY ANNE
GABRIELLA GRACE
OSCAR
WESLEY JAMES
SKYLAR ROSE
AVA
BRIANA ANNE
LANGSTON
OWEN BLAKE (being born right now, on Lucy’s birthday!)
HADRIAN
BABY BOY ROBILLIARD
ASAIAH
NYAH
And of course, NORA JULIET who would not be here if it weren’t for Lucy
And this is baby Hudson, whose mom did not come across my blog until a few days after her son was stillborn this past December. This is why I push so hard to get Lucy’s story out into the world, because Hudson would be here today if only the doctors had provided the right monitoring and treatment. Lucy would probably be here today if she had been given the correct monitoring and treatment too. I will keep telling our story and fighting for the Hudsons and the Lucys who deserve to be here with us.
“I wish I had read your blog whilst pregnant because I would have had the knowledge I have now and possibly could have saved my baby Hudson who was born sleeping on 29th December 2016 due to Anti-K antibodies and having no close monitoring – I was totally unaware of what most of it all meant until I read your blog.”
HUDSON
The love I feel for these babies is unreal. The very tragedy I thought would push babies out of my life has brought so many babies into my life that I have a deep affection for. They are my “yes” from God.
For anyone who feels like God has turned His back on you, for anyone who has suffered unimaginable loss and for those whose lives have not turned out the way they planned, just decide to trust God anyway. Because I am convinced that when there is great loss combined with great trust in God, miraculous things happen. Yes, even a one pound baby girl who never took a breath outside of the womb can leave a legacy that reaches throughout the world.
Happy fourth birthday in heaven, Lucy Dair. I am proud to be your mama. You were worth it all. Four years closer to having you forever. Despite all the pain and agony of waiting to have you, I absolutely love being your mama.
Luke 2:19 But Mary treasured up all these things and pondered them in her heart.
This verse in Luke is one of my favorite verses in the Bible. Mary had just given birth to her first child and a little while later a group of shepherds came running in, telling her about angels that had just visited them in the fields. The angels were praising Jesus, the same Jesus Mary had just given birth to. What must have been going through her head at that moment?
As 2016 draws to a close I realize that this year has been a year of treasuring up and pondering; like Mary did in her heart when the shepherds came rushing in after Jesus was born. I can only imagine how overwhelmed Mary was after going through labor and delivery, then facing these visitors and their message from God. Sometimes the weight of a moment is too much to take in right then. Sometimes God reveals things to us that we can’t possibly fathom. Sometimes the beauty and wonder of the moment deserves more than the time it’s given. Life is so fleeting. I often wish I could pause time to fully take in the wonder before me, chubby arms and legs, toddler sized proportions in nothing but a diaper, the sweet five year old love ballads to Mommy, the gentle kiss from biggest brother to tiniest sister. Since I can’t stop time I treasure up the moment and soak it in, ponder it in my heart, store it up to take out later and admire. My year has been full of these moments that I want to keep forever. Moments that point back to God and His goodness.
The moment when Mary stopped to treasure up all the things that were happening around her, to ponder the message God was sending her about her child, often reminds me of a day when I did the same but in very different circumstances. February 8th, 2013, the worst day of my life, when my daughter’s heart stopped and my body became a tomb, God made His radical promise to me, “I WILL REDEEM THIS.” I had no energy or clarity of mind to even attempt to grasp what the words meant, so I stored it up for later. Like Mary, who probably could not believe what was happening to her or how the path of her life had suddenly gone a completely different direction than expected, I struggled to take it all in. I was in shock. But God spoke over and over again, an audible voice in my head, “I WILL REDEEM IT.” And each time He spoke I took His promise like a treasure and stored it away to ponder later. Since that day, almost four years ago, I have contemplated the promise many times, turning it over in my mind. God promised to redeem my daughter Lucy’s death and all the loss and pain that came with it. But did He realize how much was lost on that day and all the days since then? That promise of redemption feels too large. It feels impossible. The first year or two after Lucy’s death I reached in and took that promise out in anger, wielding it like a weapon towards God, “You promised me! But you let more tragedy strike instead! Why would you make a promise you could never fulfill?” How could He possibly repay me for my daughter’s death? Over the years God has patiently and carefully crafted my story, moment by moment, using all the loss for good, mending broken places and making the barren wasteland fruitful. And yes, even redeeming parts of my Lucy loss that I thought would never be redeemed on earth.
This year especially I have seen the redemption He promised emerge more than ever. There have been countless moments of glory, beauty and joy that I never thought I would experience again on earth, too many to list here. Many of these moments involved my miracle baby Nora and many of these moments involved other women with high risk pregnancies who were looking for support. I treasure all these things up and praise God for them (especially my baby Nora!)
There have been other moments this past year that felt surreal, heavy and empty at the same time because Lucy wasn’t in them:
The play date where all the babies have their preschool siblings along too but three year old Lucy is missing. I’m supposed to choke down my chicken nuggets and smile like everything is normal. I’m the only one who sees the empty space where she should be.
Folding up and putting away her empty stocking on Christmas Eve after the other three have been filled with toys and chocolate.
Telling her brothers that I am sorry, I don’t know what she would look like today and watching their hot tears stream down.
Suddenly realizing in the middle of an English lesson that the little girl I’m teaching is the exact age that Lucy would be today. Her big brown eyes staring up at me, her little laugh. Would Lucy look like that? I don’t even know what her laugh sounds like. I weep for my baby girl the entire drive home.
Over the course of this year God has been teaching me to pause right then and ponder the painful moment, gather it up and give it to God to be redeemed later. I’m learning to trust that He WILL redeem even that terrible moment. Every tear shed, every time the weight of grief feels too heavy to bear, every single thing I miss with Lucy will be redeemed, repaid and restored. God can redeem the deepest loss, even your loss. He can bring beauty from ashes, He can even heal parts of your heart that you thought were broken forever. Some things can never be mended until we get to heaven, but these things that He does redeem on earth are our foreshadowing of the glory and restoration to come.
If you are reading this I have prayed for you. I’ve prayed for your 2017, that God would bring about the most beautiful redemption in your life. I’ve prayed for your healing and for your joy, that God would give you the desires of your heart and would grant you the request of your lips. Be bold and ask Him for the thing you so desperately want. Gather up all of your hurts and hand them over to Him to be redeemed. Those who sow with tears will reap with songs of joy.
Psalm 126 When the Lord restored the fortunes of Zion, we were like those who dreamed. Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, “The Lord has done great things for them.” The Lord has done great things for us, and we are filled with joy.Restore our fortunes, Lord, like streams in the Negev. Those who sow with tears will reap with songs of joy. Those who go out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with them.
I have been so bad at regularly updating the blog these past few months! I have several posts written in my head that I really want to type out but I just cannot find the time to do it. Part of me feels guilty about this since I used to be so consistent with my blogging, but part of me also feels relieved that there have been no big tragedies in my life lately to blog about. I am busy with life, regular life with my three earth babies, and it is wonderful. I still feel like I’m trying to reintegrate back into “normal” life, except that it is a new normal. I still struggle with the fact that I will never be the person I was before anti-kell antibodies and before my daughter died. This adjustment to my new life feels very similar to when I move to a new country. It’s disorienting at first trying to understand a new culture, learn a new language, figure out a new transportation system, make new friends, find your way around a new city, etc. I’ve realized that it takes me at least a whole year in a new country to start feeling like I’m not just a visitor anymore, like I belong. I still feel like I don’t quite belong here even though she died three and a half years ago.
For the rest of my time here on earth my life will be divided into two parts…no, not even two parts, two completely different lives. There was my life before Lucy and there is my life after Lucy. It feels like I am just now figuring out how to make this new life work. I am feeling more confident finding my way around this new country. The culture shock is not as terrible now, but it still jolts me some days. Often, the cloud of sadness settles on me and overtakes everything. I can’t believe I’m missing her whole life. I can’t believe I have to actually go through the rest of my life not knowing my daughter, not interacting with her on a daily basis. Most of the time, though, I just feel thankful. I’m thankful for all that God has done for me. I’m thankful for the many ways He continually fulfills His promise to me that He made on the day Lucy died. He said He would redeem her death and my pain, and He is slowly doing that, day by day (this is one of the blog posts I need to write!)
I started working part time again teaching English to German families and I love it. It is so rewarding and fulfilling for me and the extra income is desperately needed. We finished paying off all of Nora’s medical bills, but we still have our credit card bill to pay off. Normally we don’t use our credit card at all unless there is an emergency but after we lost all of our savings on the “adoption” and I moved to Houston last year we had to use it on a regular basis. Hopefully we can now pay it off over the next year.
Lately I’ve been struggling with the fact that if I didn’t have anti-kell antibodies, we would have already been trying again for our next baby. We would have to get pregnant this month or next month if we wanted Nora to have a sibling two years younger than her. It hurts me to see Liam and Asher play and wrestle while Nora sits all alone on the sidelines, smiling sweetly at her brothers. She should have a three year old sister. I wish I could be pregnant right now with her little brother or sister. I don’t want her to be all alone without a sibling friend close in age. It is another loss that hurts me every day. We are not trying to conceive, by the way. Here is Nora playing with her stuffed animal friends on her little couch that she got for her birthday.
Nora is now 14 months old and is still such a content, joyful baby. I love having a little girl in the house. She is so different from her brothers. She loves shoes, clothes and jewelry and tries to dress herself already. She is very maternal like I was when I was little. Her baby dolls and stuffed animals have all been rocked to sleep, bottle fed, kissed, patted, dressed, undressed, dressed again and even sung to. Nora loves talking and singing. Her favorite sentences are “I love you.” and “I like this.” I ask her, “Nora, who is your hero?” and she says, “Doc Mo” which is her version of Dr. Moise. Last night she was playing with her Daddy before bed and she pointed to her belly and said, “Tickle this.” She is finally walking all over the place and trying to keep up with her brothers. They are still obsessed with her. They think she’s hilarious and adorable and they can’t believe how soft her skin is. I often hear one of them say something like, “Mommy, Nora is so cute she’s making my eyes cry.” They are gentle around her and very protective of her. If one of them accidentally knocks her down or hurts her somehow, I always end up comforting the big brother more than I have to comfort Nora. She might cry for a minute but her brother will cry for half an hour and then feel guilty all day about how he knocked her over and hurt her. In these moments I feel extra thankful that she didn’t die in my womb. Her brothers would have been absolutely devastated. I’m so glad they didn’t have to go through that heartache again. Liam asks often about Scarlet and Lucy and he says on a regular basis, “What if we had been able to keep Lucy, Scarlet AND Nora? I would have loved that.” He just said it again this morning. Our lives are interwoven with grief and joy and “what might have beens” but they are anchored in the steadiness of God’s love and goodness. Our joy and our stability are found in Him and we are so thankful that He is unchanging. Here are a few pictures of Nora lately and a video from her first birthday that I forgot to post earlier.
Nora and five year old Asher
When big brother “helps” Nora get a sip and almost drowns her instead. Ha!
That time Nora loved the little chick so much she almost squeezed it to death.
Mommy and Nora
Nora feeds a baby goat at the barnyard.
Feeding ducks with Liam.
That tiny ponytail!
This morning she tried out the sandbox for the very first time and scooped shovels of sand onto her head.
This is a heavy post. My grandfather is dying right now. He is 93 years old and he’s in a hospital bed in my old bedroom in my parents’ house down the street. We have been keeping vigil by his bedside for the past four or five days, never leaving him alone for more than a few minutes at a time. Days ago we thought that he surely wouldn’t last another day, another hour, but the body that has worked well for almost a century is not willing to give up so easily. It is heartbreaking to watch, emotionally draining and depressing. We know that he is going to heaven and that he has wanted to go to heaven ever since my grandmother died five years ago, but it is still painful to watch the transition. I keep thinking about Lucy and my three babies on earth. Liam, Asher and Nora will all die one day and I probably won’t be here to make sure their transition to heaven will be as comfortable as possible. This is a distressing thought. Will my babies be well loved in their last hours? Will they be scared? Will they be in pain? My Daddy-D, he is somebody’s baby boy, and that’s how we are treating him…the way we want our children to be treated when they die.
Nora and Daddy-D have had a special bond, especially these last few days. She loves sitting on his bed next to him, patting him and babbling at him, even saying his name. His face would light up when he saw her in the last few days that he was aware and still in control of his body.
Daddy-D being silly with Nora
Playing peekaboo with Daddy-D
Nora gives love pats while my sister moistens and cleans Daddy-D’s mouth.
She played peekaboo with him, touched his nose, laid her head on him, and all I could think of was Lucy doing the same things with him soon, in heaven. How long until he goes from playing with my daughter Nora, to playing with my other daughter Lucy? Days? Hours? Minutes? And he will get to know her before I do, my own daughter. How do I process this?
As he has slowly deteriorated and faded, we have been speaking more about the people who are waiting for him in heaven. My mom encourages him, “Mama is waiting for you, Daddy! She can’t wait to see you!” He seems at peace most of the time. I have to mention Lucy…”And you will get to see Lucy soon, Daddy-D! Tell her…” What do I say? What kind of words can I send with him that can adequately convey my love to her, my ache for her, my inability to live without her here? There are no words in the English language powerful enough to express how I feel about her. “Tell her that Mommy loves her and misses her so much. Tell her about her sister and her brothers. Tell her how fun it was playing with her baby sister. I’m jealous that you get to go meet her.” The words are limp. Not enough. He can’t really move but his eyes fill with tears and the tears spill out the sides, running down his face. He tries to speak but we can’t understand what he wants to say.
As I watch my Daddy-D get closer and closer to his last breath I think of the verse-
1 Corinthians 15:55 Where, O death, is your victory? Where, O death, is your sting?
I know that Jesus conquered death, but these words don’t feel true because death seems so much bigger at the moment. Looming, mysterious, inescapable. None of us are getting out alive. I feel weighted down as he struggles to breathe. THIS is the best case scenario? One day, we will all be dead.
I ask God for His perspective, for His light to brighten our darkness. And He gives me thoughts that comfort: Death is inescapable, but for those who love God and believe in Him, it is only a tiny slice of time; a moment. It doesn’t define us, it isn’t the end, it is just a transition we all have to go through. For those of us who are left behind, death is a separation from the people we love, and that is why I hate it. For those who are dying or have already gone ahead, death is a link to the people we love, and that is why I appreciate it. Yes, death is real and it affects us all, but there is also SO MUCH LIFE. Daddy-D experienced so much life. He lived for 93 years! When my mom was a tiny girl he promised her that he would tell her he loved her every single day, and he did. He kissed her and doted on her and told her she was beautiful and she believed him. He loved his wife and his kids and his grandchildren well. He loved God and was faithful to Him. Daddy-D was a leader, a WWII veteran, a successful engineer and he LOVED giving advice. When we were younger he would say, “Look at my old, wrinkly face. Would you swap faces with me? No? What if I gave you ten dollars, would you trade faces with me then? No? What if I gave you a million dollars, would you trade faces with me then? No? Then you are a millionaire right now, at this very moment.” And I felt like a millionaire. He often reminded us, “Deciding to follow God is the most important decision of your life. Deciding who to marry is the second most important decision you will ever make.” I could write so much about his life, but the point is that he LIVED. And after his last breath, when his life here on earth comes to an end, there is more life. Everlasting life stretches out ahead of him. Thank you, Jesus for this gift. What if we could see death for what it really was? Just a thing we all have to get through, like puberty, or winter (or summer if you live here in Alabama.) It does not loom, it does not define us. THERE IS SO MUCH LIVING TO BE DONE, before death and after. Having this assurance brings the most amazing peace, even here in the valley of the shadow of death.
If Daddy-D could tell you one thing right now as his time on earth dwindles, I know he would ask, “Have you made the most important decision of your life?” Because that decision is what defines your eternity, and when you accept the free gift of life that Jesus offers, you rob death of it’s power.
Romans 10:9 If you confess with your mouth that Jesus is Lord, and believe in your heart that God raised Him from the dead, you will be saved.
I love you Daddy-D. Give Lucy so many kisses for me.
“Mommy, do you want to die in an explosion so you can go to heaven and see Lucy?” Five year old Asher caught me completely off guard with his question. I wasn’t sure if I wanted to laugh or cry but his face was earnest and he really wanted to know. I told him I didn’t want to die in an explosion but I was excited about being with Lucy one day when I do eventually get to heaven.
Lucy’s death had such an immediate, violent impact on my life but the rippling effects are really hitting the boys now. Liam and Asher are suddenly old enough to comprehend that their little sister is dead and it is heartbreaking to watch them work it out in their minds. The boys are so obsessed with Nora and they love having their baby sister with them. I think they are just now understanding all of the beauty and wonder and love that they are missing without Lucy here. I found this drawing at the bottom of Liam’s backpack the other day.
I asked him about it and he said it was a bad guy freezing the whole world and all the people died but Lucy (who is the tiny dot in the upper left hand corner) survived. Lucy survived. Our ultimate fantasy scenario. Liam also told me yesterday, “Mommy, I’m sad about a daydream I had where all the babies are trying to be alive, like all the babies in their mom’s bellies, and the ones who don’t win die but only the winner gets to be alive.” The boys have asked us about having another baby and we told them that if I had another baby in my belly we don’t know if that baby would live like Nora or die and go to heaven like Lucy. Asher asked me today how old Lucy is and I told him she is about 2, almost 3 years old. I hesitated, though, because I honestly don’t know how aging works in heaven. Would Lucy grow up, year by year like she would here? Or is she still a newborn waiting for me to get there so I can watch her grow up? Or is she an adult? If she were here on earth she would be turning 3 years old this summer. She would be exactly two years older than Nora, just like Liam is two years older than Asher. The boys always have a combination birthday party in February/March and I know Lucy and Nora would have had a combination birthday party every July. I hate that Nora doesn’t have her big sister here with her. Such a huge loss. The boys are so sad that Lucy isn’t here with them. Asher asked what she looks like now and I had to tell him I wasn’t sure. He looked so sad and asked if she looked just like Nora but had a different name and I told him I didn’t know. He said he wanted to be in an explosion so that he could go see what Lucy looks like. I know some of these thoughts seem morbid, but they are just a peek into five year old and seven year old minds trying to understand death. I hate that death is such a big part of our family and part of the boys’ childhoods.
Asher always includes Lucy in our family. He was very wounded this past Christmas when I didn’t hang a stocking up for Lucy. I promised him that next year we will hang a stocking up for both of his sisters. This is his latest family drawing:
He is holding Nora and up in the sky is Lucy in her mansion in heaven. She is looking out of the window at us. He insisted that I hang the picture up on the wall above Nora’s crib because he drew it for her. Oh how my heart hurts when I think about telling Nora one day that she has a sister that she will never get to meet until she gets to heaven. Watching the boys deal with Lucy’s death now, three years later, is a reminder that this terrible tragedy that happened to us in 2013 isn’t just over, even though we are continuing to heal. The harsh reality is that the tragedy continues and the ripples continue to bruise us, to cut into our hearts, to reopen old wounds. There are facets of our loss, our life without Lucy, that have yet to impact us. One day when Nora gets older she will wish she had someone to play My Little Ponies with; a sister to tell secrets to and do each others hair and share clothes with.
It is hard to go through life without such a vital part of our family. It is hard for siblings to comprehend their sister being dead. Their sister will never be a part of our family here in the flesh. But goodness, she makes heaven so much sweeter and more tangible. When Asher builds things with Legos he often constructs a scenario here on earth and then one in heaven too. “Mommy, these guys are in their house having a meeting and this guy is in heaven.” Thanks to Lucy, heaven is a very real place to us. She has gifted us with an eternal perspective on life and a joyful anticipation of heaven. I used to dread the end of my life on earth. I feared death. It made me feel anxious and panicky. Now, I look forward to it; not in a suicidal way, but in a very sweet, excited way. I feel peace about dying and I can’t wait to get to heaven. The boys are excited about heaven too and they look forward to meeting their little sister and seeing the mansion that she lives in.
The rippling effect of our loss and heartache will continue to hit us throughout our lives. I know one day when all the 2013 babies start kindergarten I will have an intense ache in my heart…and when they graduate and when I know she should be in college and when I see a beautiful bride her age walk down the aisle and when I meet my grandchildren but none of them are Lucy’s…I will continue to be wounded again and again and so will her Daddy. As her brothers grow and understand more and more about this great gaping hole in our family, they will continue to be bruised as well. BUT these destructive ripples are confined to this earth. They will not follow us to heaven. They are harmless in light of eternity, and that is why I look forward to heaven so much. I just can’t wait to see my first girl and to see all of my children under one roof.
Anti-Kell antibodies, along with the other red cell antibodies during pregnancy, can be very confusing and scary, especially when you are newly diagnosed and trying to figure out what is going on. Since the disorder is very rare, medical professionals don’t encounter it often and sometimes have to rely on their memory of what they learned about it in med school. Some of the most common misconceptions revolve around the antigen blood results, titers and MCA scans. I have been trying for years to come up with an analogy to easily illustrate how these things work together and I have finally found a pretty good one. Obviously it isn’t perfect but it’s the clearest one I’ve been able to come up with to represent these specifics facts. In this post I will be using anti-Kell antibodies as the illustration but the analogy can also be applied to the other red cell antibodies such as E, D, c, Jka, Jkb, Fya, Fyb, etc. So, here is my shark analogy:
The sharks represent the mother’s antibodies. They have the potential to be very dangerous, they are designed to attack and destroy. But this doesn’t necessarily mean that the baby will be attacked by the shark. Many of us have been in the ocean with sharks and not been attacked by sharks. Just because they are there it doesn’t mean that they will attack. For most people, the thought of sharks is terrifying and the thought of these antibodies possibly harming our babies is terrifying as well.
Let’s talk about the antigen first. The antigen is hereditary and is passed down from a parent. It isn’t dangerous, just a protein in your blood, similar to a blood type. If the baby has the antigen, passed down from his father, then that puts the baby in the ocean with the sharks. Still not necessarily getting attacked by the sharks but in the water and possibly in danger. If the baby did not get the antigen from the father, then the baby is on the beach, far back from the shoreline, playing peacefully in the sand or maybe taking a nap. The sharks are still in the water with all their muscle and sharp teeth, but the baby is way up on the land, completely out of harms way.
Ironic picture of my baby who certainly wasn’t “safe on the beach” during my pregnancy
This is why it’s important to have the baby’s father tested for the Kell antigen. It’s obviously necessary to know whether your baby is in the water with the sharks or up on the beach playing peacefully in the sand. Many times I’ve been approached by nervous parents who tell me that the nurse or even the MFM has told them the antigen status of the father has no effect on the baby. Or they have been told, after the father’s test showed he is negative for the Kell antigen, that the baby could still be attacked by the mother’s antibodies. This is simply not true. There is no way a shark can attack a baby who is way back away from the water, on the sand. And there is no possible way for the antibodies to hurt your baby if the baby is Kell antigen negative. By the way, the mother is always Kell antigen negative since it is impossible to produce anti-Kell antibodies if you have the Kell antigen. This is why we always focus on the father’s Kell antigen status. If he is negative for the antigen we know that two negative parents cannot possibly pass down a gene to their baby that they themselves don’t have.
Ok, so if your baby’s Daddy is Kell antigen negative, your baby is safely playing on the beach and there is no need to worry about any sharks. If your baby’s Daddy is Kell antigen positive then it’s possible that your baby might be positive for the antigen as well. You can find out at 14 weeks by doing a non-invasive maternal blood test if your baby is Kell antigen positive or negative. The blood test can also be used to test for the E antigen and the c antigen. There is an even earlier maternal blood test to check the baby for the D antigen (rh.) For all other antibodies an amniocentesis can be done at 16 weeks to check baby for the antigen. So, what if my baby has the antigen? That means your baby is in the water with the sharks. In my analogy we are standing on the shoreline looking out at the ocean and the baby is under the water swimming around, much like they do in the womb. It’s very scary as a mother to know that your baby is under the water with the sharks and you can only gaze out anxiously at the surface of the water, unable to really check on the baby and see how he is doing.
This is how it feels during a sensitized pregnancy. It is such a helpless, scary experience to know you can’t physically see or help your baby stay safe from the sharks. Thankfully, there are ways that our heroes, the medical community, can check on our babies and protect them from the sharks.
First, let’s talk about the titer. Your titer shows the amount of antibodies that are in your blood. The titer does not tell us anything about how our baby is doing under the water. Is baby being attacked? Is he struggling? Is he ok? Titer does not answer any of those questions. The only question the titer answers is “How many sharks are in the water with my baby?” Through years of research, doctors have come up with a critical titer for each antibody. The critical titer says, “Once there are this many sharks in the water with your baby, your baby is actually in danger of being attacked.” For most antibodies the critical titer is 16 and for Kell the critical titer is 4. A recent study also showed that Kell in particular can affect the baby at any titer, even titers below the critical threshold. Regardless of the type of antibody, even with a low titer, there is still at least one shark down there swimming around with your baby. Titers are helpful though, because they give an idea of how closely the baby should be watched and whether baby needs a shark cage or not. Only the babies in the most dire circumstance need a shark cage, but I’ll get to that later.
So, a very high titer means there are a lot of sharks down there with your baby, which does raise the chances of baby being attacked. My titer was 1,024 and all of my babies happened to have the Kell antigen, so with each pregnancy I had a baby swimming in shark infested waters. As expected, all three of them were attacked at some point. If you have a low titer, there are fewer sharks and a lower chance of being attacked. But it is still important to be vigilant just like you would if your baby was swimming around in the ocean with a couple of sharks out there.
MCA scans measure how fast your baby’s blood is flowing through the middle cerebral artery in the brain. The MCA scan will give you a PSV number, which is the speed at which your baby’s blood is flowing and if it is too fast, the doctors can be pretty certain that your baby is anemic. The PSV number can be converted to an MoM using this calculator. An MoM above 1.5 signals an anemic baby that needs help. So in our analogy, the MCA scans are the doctor’s way of going down under the water and getting eyes on baby. In our analogy the MCA scan answers the questions, “Is my baby being attacked by the sharks?” “Is my baby’s life in danger?” “Does my baby need help fighting off the sharks?” The MCA scans answer the important questions that regular ultrasounds and titers cannot answer. The real life questions the MCA scan answers are: “Is my baby anemic?” “How anemic is my baby?” “Does my baby need intervention in order to survive?” “Is my baby’s life in danger?” This is why MCA scans are so important. Would you be satisfied just knowing how many sharks are in the water? Or would you also like to know exactly how your baby is doing in the water and whether your baby needs help or not? Women with critical titers should have weekly MCA scans starting between 16-18 weeks. Thankfully, fetal anemia is treatable, but only if it is caught in time.
So, what if my baby is being attacked by the “sharks” and is anemic? The doctors can help the baby fight off the sharks by giving the baby blood through an intrauterine blood transfusion which helps keep the baby safe. Another way that doctors keep the baby safe is by monitoring closely and removing them from the shark infested waters as soon as it is safer for baby to be on the outside.
What about the shark cage mentioned before? I’m using the shark cage to represent IVIG given early in pregnancy. IVIG is usually given (often only at the mother’s prompting) to women who have had a previous loss or previous severely affected pregnancy, since it is obvious that the mother’s antibodies are very aggressive in those cases. But I am also seeing IVIG being offered more frequently to women who have no previous loss or even previous severely affected pregnancy but have very high titers, usually 256 or 512 and above. I think (just my personal opinion here) every woman with titers in the hundreds or thousands should be encouraged to start IVIG treatments early in the pregnancy (10-12 weeks) to protect their baby from their antibodies. The IVIG does act like a shark cage in our analogy by protecting the baby from the sharks that are swimming all around. IVIG delays and/or prevents fetal anemia and it is a good way to keep the baby safe in extreme cases. The shark cage protects the baby from being attacked whereas the more common approach just watches and waits for the baby to be attacked before stepping in and trying to help the baby. With both Nora and Callum we used the IVIG “shark cage” to protect them while they were in shark infested waters and that is why they are alive today. My doctors refused to even consider the IVIG shark cage for Lucy and that is why she was attacked so early and so viciously.
So here is a quick recap of the shark analogy:
ANTIBODIES=SHARKS
TITER=NUMBER OF SHARKS IN THE WATER
ANTIGEN NEGATIVE=BABY IS ON THE LAND
ANTIGEN POSITIVE=BABY IS IN THE WATER
MCA SCAN=DOCTOR GOES UNDER THE WATER TO CHECK ON BABY
IVIG=SHARK CAGE
Hopefully my shark analogy has helped some of you and not confused you more. Thanks to my fellow antibody moms in our Facebook group for helping me clear up some of the details in my shark analogy!
It has been six years since Lucy’s heart stopped. I have lived 2,191 days without my daughter. 2,191 times my eyelids flickered opened and I awoke to a world without Lucy in it. And I got up out of bed and I made it through the day. Over two thousand times. In all of those days I have missed small and intimate moments with her, mundane moments that we parents often take for granted, and important milestones. All the baby snuggles, reaching for her hand in a parking lot, painting tiny toenails and washing her hair in the bath. The first words and the Halloween costumes and teaching her how to read. Birthdays and Christmases and bedtime stories. I even miss potty training and disciplining her and taking her to the pediatrician for her vaccinations. The overwhelming weight of all the things we have missed while living our lives without Lucy seems like it’s too much to bear sometimes. At the moment my grief is so fresh and raw, it seems impossible that it has been six whole years since she died. The persistence of my grief is a testament to the depth of my love for her. Oh how I ache for my little girl. But the grief should not come as a surprise. Just as it is good and right to enjoy and celebrate the children we have with us, it is good and right to miss and mourn the children that wait for us in heaven. Liam just turned ten years old yesterday and we celebrated his life. We gave him presents and made his favorite breakfast and told him we loved him. We didn’t say, “Oh, that was ten years ago. I already celebrated him back then and I’ve moved on by now.” We acknowledge the joy of his life and the gift of having him here with us. Conversely, we grieve the absence of our precious daughter, Lucy, and we acknowledge the depth of our pain and how much we miss her.
In a sermon preached only days after the 9/11 attacks in New York City, Timothy Keller said that there are two mistakes people can make in the face of tragedy, suffering and death and they are warned against in 1 Thessalonians. The first mistake is to try to avoid grief and weeping. The second mistake is to grieve as those who have no hope. He says:
“The Bible indicates that the love and hope of God and the love and hope that comes from one another has to be rubbed into our grief, the way you have to rub salt into meat in warm climates where it will go bad. Your grief is either going to make you bleaker and weaker or it could make you far more wise and good and tender, depending on what you rub into it, what you put in. And that’s what we’re here to do. We’re here not just to weep but to rub into our weeping, hope and love.”
So today I acknowledge my profound grief for my daughter, Lucy Dair. Her name means light, and when her heart stopped, a light went out inside me that will not be lit again until I am in heaven. I feel her absence every minute of every day. We all love you so much Lucy.
Original photo by Wright Media, edited with permission by Siobhan Fisher Photography ❤
But I do not grieve as one who has no hope. I know that, just as He promised, God will redeem every one of the 2,191 days we have missed with Lucy, and He will redeem all of the missed days to come. Today, as always, I will continue to rub hope and love deep into my wounds. Lucy left me with many gifts that I have slowly been unwrapping over these past six years since she left. The way I look forward to heaven now is a gift. My ability to appreciate life in a way I never have before is a gift. The way my heart has been softened towards others who are hurting is a gift. Even the suffering itself can be viewed as a gift because it teaches us things no one else can teach us.
Sheryl Sandberg wrote a book called Option B after her husband died unexpectedly and she was left to raise her two young children on her own. In one section of her book she writes about Joe Kasper, a man who lost his son but then found healing when he realized that his actions could be a part of his son’s legacy.
“While studying for his Master’s degree, Joe created a therapeutic process called ‘co-destiny,’ which encourages bereaved parents to view their child’s life in a larger framework so that death does not become the end of the story. Parents who seek purpose and meaning from their tragedies can go on to do good, which then becomes part of their child’s impact on the world. As Joe explained, ‘I realized that my destiny was to live my life in a way that would make my son proud. The awareness that I could add goodness to my son’s life by doing good in his name motivates me to this day.’ It’s not surprising that so many trauma survivors end up helping others overcome the adversity that they have faced themselves. ‘There is nothing more gratifying than helping someone else escape this quagmire of despair,’ Joe told us. ‘I know this passion of mine is an area of personal growth related to my trauma. Helping others grow from their trauma reflects back to my son’s life.’ After undergoing a hardship, people have new knowledge to offer those who go through similar experiences. It is a unique source of meaning because it does not just give our lives purpose- it gives our suffering purpose. People help where they’ve been hurt so that their wounds are not in vain.”
I can attest to the healing power of adding goodness to Lucy’s life by doing good in her name. This is part of the rubbing in of love and hope. Very few things in my life are as gratifying as helping other women who are dealing with a high risk pregnancy or the loss of a baby. My trauma has given me unique experiences and insights that I can share with others. I’ve been able to learn the ins and outs of this high risk pregnancy disorder and I now have the tools to help other women advocate for the right medical care during their pregnancies.
I have also been on the receiving end of this hope sharing. When Lucy was stillborn I was in the hospital for two days and two nights. While I was there I encountered many doctors and nurses who were kind but I only remember one woman who was able to comfort me with her words. A nurse told me she had suffered a miscarriage in the past and was devastated by it. She told me about her rainbow baby who had brought her so much healing. “You just have to try again, honey. You just have to get back up on that horse and try again.” Obviously, her words weren’t perfect because I couldn’t just “get back up on that horse and try again” like she had said since my next baby would also face anti-Kell antibodies like Lucy. But her act of sharing even just that tiny glimpse into her own pain, and her acknowledgement of my desperate desire for a living baby gave me hope. It encouraged me to hear about someone else losing a baby and then finding hope and trying again afterwards. Since then many, many people have reached out and shared their own stories of suffering with me and those are the people who have made a huge impact on my life. Our Support for Antibodies in Pregnancy group on Facebook is full of women who have been through traumatic losses and high risk pregnancies and they use their suffering to lift other women up. We share what we have learned from our own pregnancies and we help others protect their babies. In fact, if I had not found the women in the group I don’t think my own children, Nora and Callum, would be alive today. I was not a part of the group when I was pregnant with Lucy so I had to figure out that pregnancy on my own. What a difference these women made in my life by sharing what they gained from their trauma.
My friend, Melanie DeSimone, lost her son, Dominic, several years ago and since then she has started a blog, The Life I Didn’t Choose, and a Facebook group for bereaved parents, Heartache and Hope: Life After Losing a Child. She has used her suffering to encourage and support other families going through similar losses. The wisdom and empathy that Melanie shares with thousands of people daily is only available to her because of Dominic, and because Melanie has chosen to rub love and hope into her grief.
For those of you who have suffered a loss or gone through a traumatic event or faced discrimination, what do you know now that you didn’t know before your crisis? How has your perspective changed? These are your gifts to share with the world, to bring purpose to your suffering and to help others who are facing a similar tragedy. And I can tell you from personal experience that when you reach out and use these gifts to help others, it will end up benefiting you more than you can imagine.
Lucy’s life and legacy live on through the families who have been changed by her story. Here are some of the gorgeous babies from the past year or two who have been helped because of Lucy’s story. Their parents are some of the bravest people I know. I cannot describe how much joy and fulfillment these babies bring to my life and I feel honored to be a part of their stories. Happy birthday, Lucy. Some of these babies would not be here if it weren’t for you. I hope you can see what a difference your life has made in the world. I am so proud to be your Mommy.
Maggie
Bay
Oliver
Jake
Hayes
Cameron
Alex Ray
Francesca and Vincenza aka Frankie and Vinnie
Mila
Cole
Nolan
Harris
Paxon, Madon and baby sibling on the way
Brianna Anne
Kolt
Eliza
Rainbow baby girl Stevens on the way
Piper
Evangeline
Nusayba
Uwais
Rainbow baby girl Stacey
Baby Allen
Meadow Mae
Ezra (baby sibling on the way)
Mattea
Crosby
Anysia
Grace
Emmi
Zylas
Baby Rusch #3
Cameela
Laney Maree
And beautiful Liliana, who, like Lucy, would probably be alive today if she had received the right care.
Liliana
Liliana
Our little rainbow baby, Nora, is now almost three and a half years old. She is in that shifty space between baby and kid where one minute she is using words like “consequence” and “incredible” in complex sentences and the next minute she is shouting for Mommy to come wipe her butt after a good poo. It’s amazing to watch her grow and transform into the person she will be. She is so different from her brothers; another species entirely. At her age they were reading independently and constantly trying to run over the edges of tall things. The boys would spend hours every day constructing train tracks and creating deadly train crashes along the way. Nora doesn’t care about reading because she can just make up the story herself if there isn’t an adult around to read it to her. She spends most of her day thinking about princesses, making up dances and songs, and caring for her baby dolls. She loves being in charge, taking care of people’s needs and feeling romantic.
Parenting a three year old is both fun and exhausting because your child can now verbalize her thoughts about the world which means there is an endless stream of words and questions flowing out of her mouth. We laugh every day at something hilarious and ridiculous that Nora has said and we die from the cuteness too. She recently started telling us that she loves us and she uses it to her advantage when she doesn’t like our decision about something. “Nora, I have to go to work now.” says her Daddy. “But Daddy, you can’t go to work because I love you.” “Nora, it’s time to take a nap.” “But, I love you so much. I can’t take a nap.”
Nora is also very aware that she has a sister named Lucy who isn’t here with us but is still a very important part of our family. For Liam and Asher it comes naturally to include Lucy in most things, which still amazes me and feels like balm to my heart. When counting how many girls vs. boys in the family, Lucy is always counted. For projects at school they include Lucy in their family description most of the time. At Christmas we always hang Lucy’s golden stocking right there where it should be between Asher and Nora’s stockings. And our family ornaments always include Lucy’s name. But this Christmas Nora asked a lot of new questions that were painful and difficult to answer. “But how is Lucy going to open her stocking on Christmas if it is here? Will she be here in our house on Christmas? I want her to have her stocking. Can we give it to her?” And none of my explanations felt adequate. Recently, Nora noticed a little drawing taped on the wall in her room. It has been there ever since she was a newborn. Soon after we brought her home from Houston, Asher drew a special family picture for Nora and insisted we tape it on her wall for her to look at.
It includes Daddy, Mommy, Liam and Asher holding his baby Nora. Up in the sky, is Lucy, looking out of the window of her mansion in heaven, smiling. It’s beautiful and heartbreaking. Lucy is included as a natural part of our family but the separation is clearly illustrated. All of us down here together. Lucy up there in heaven. So Nora asked about the picture on the wall and I pointed everyone out and explained it to her and she loved it. But of course, she had lots of hard questions.
Nora notices more and more how the big brothers play together so effortlessly without her in the scenario. I mean, it only makes sense that she would not want to be part of their conversations about Fortnite or the imaginary Civil War battle they are meticulously planning out, casualties and all. But she can’t understand why they don’t want to play Barbie princesses with her or act out the Cinderella ball scene over and over again. In those moments I ache so deeply for Nora to have her five year old sister here with her. I can see the hours of fun they would have playing together every day, an easy friendship built into the family. My whole childhood was a never ending play date with my sister Kristin, who is 22 months younger than me. We didn’t even call each other by name. We called each other “friend” because we somehow knew that being friends was extra special. A person doesn’t have a choice about who her sister is, but she does get to choose who her friends are. And Kristin and I wanted everyone to know that we had chosen to be friends. We weren’t just sisters. Nora would LOVE to have a five year old sister friend, even for just one day. How many days of joy and friendship are missed? Years of friendship gone. A lifetime with her sister gone. And it’s hard for me not to let the bitterness take over as I think about the doctors at UAB with their careless mistakes and I want to ask them, “Do you know how many years of friendship have been lost because of your pride? Nora’s only sister, dead, because you couldn’t take ten minutes out of your busy day to check Lucy for anemia when I begged you to.” I forgive the doctors at UAB multiple times a week, sometimes multiple times a day, and I ask God to give me compassion for them. Thank God for the power He gives me to forgive and to love the people who are hardest to love. Without Him I would be drowning in my bitterness.
This past week Nora randomly said to me, “Mommy, I really miss Lucy and I really want her to come here.” It stopped me in my tracks. “I know, I miss her too and I really wish she could be here too.” I said. “But I want her to be here in my house and play with me. And I miss Lucy and you miss Lucy but Callum doesn’t miss her and Asher doesn’t miss her and Liam doesn’t miss her and Daddy doesn’t miss her like we do.” she said. I knew what she was trying to express, that the boys don’t miss Lucy like we do because they have each other. I told her that the boys do miss Lucy as much as we do, except for maybe Callum because he doesn’t know about her yet. “Why doesn’t Callum know about her?” she asked. “Well, he’s too little to understand and it’s hard to explain it to him, but when he gets older he will know who Lucy is.” “Will she come here tomorrow? To our house? Or maybe the next day?” Nora asks hopefully, and my heart sinks. This is the worst. “No, she’s not coming here.” “But maybe she can come later? To our house? And she can stay at our house.” Nora pushes. “I’m sorry baby, but she can’t come to our house because she is in heaven. But we can see her when we go to heaven.” I say, trying to steady my voice. “Oh!” she says, “so how do we go there? Where do we go through? Where’s the door?” “Well, we can’t go there until after we die.” I say slowly. Nora instantly looks horrified. “I don’t want to die!” Oh, now we are spiraling into uncharted territory. I don’t know what to say to my sweet little three year about the horrors of this world we live in. But I have to tell the truth so I say, “Everyone is going to die one day, but if you love God, after you die you can live in heaven forever. And it is going to be so wonderful.” “But I don’t want to die.” she repeats, looking up at me with her giant worried eyes. “I know, and you don’t have to worry about that at all right now.” I say, not exactly sure how to reassure her. “Will Lucy show me her toys when I get to heaven?” she asks and I feel relieved that we are now onto toys as opposed to inescapable death. Finally she lets me change the subject but I am shaken, and the rest of the day I feel desperately sad.
A couple days later as I was getting Nora ready for preschool she nonchalantly asked me, “When am I going to die?” and here we go again. Even though Nora’s questions are heartbreaking for me and difficult to answer, they remind me of how thankful I am that I do have the answers, even if they might be too complex for Nora to understand at the moment.
People die and kids grow up and everything changes but God remains the same. He never changes. He is constant and trustworthy and His love for us never changes. He is our anchor. He even conquered death so really, for those who know God, death is only moving from this place to our real home. Lucy is home and I wonder if she asks God, “Can Nora come to our house and stay? Will she come here tomorrow? To our house? Or maybe the next day?” And He says that the wait will feel like the blink of an eye and before Lucy knows it her family will be home forever. Together. And the most beautiful, comforting thing is that God does not leave us here to flounder in grief while we wait. He is here with us, filling in the gaps where we ache, where dreams are unfulfilled and people are missing. God can be our fulfillment, our strength, our peace, our joy. So maybe Nora has to wait until heaven to have a sister, but she can have other meaningful relationships here and she can have peace, joy and fulfillment through the God who never leaves or changes.
Zephaniah 3:17 The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quiet you by His love; He will exult over you with loud singing.
Romans 8:38-39 For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.
Deuteronomy 33:27 The eternal God is your refuge, and underneath are the everlasting arms.
Are any of you interested in donating plasma in order to help save lives? As an added bonus, you can make some money while doing it. If you have anti-D antibodies or have a negative blood type, you could qualify to become a donor for a company called Grifols. They use plasma to create an important immune globulin medication (Rhogam) that is given to Rh negative women during pregnancy to prevent them from creating antibodies. Most of you know my story, that I have anti-Kell antibodies which killed my daughter Lucy and threatened the lives of my two youngest children, Nora and Callum. Anti-D antibodies work in a similar way and are much more common than anti-Kell, putting many babies at risk for hemolytic disease of the fetus and newborn. The Rhogam medication is given during pregnancy to prevent the anti-D antibodies from developing. If there was a medication like that for anti-Kell, I probably never would have lost Lucy or faced high risk pregnancies. My sister has a negative blood type and her husband has a positive blood type, so she potentially could develop anti-D antibodies. If she did, she would face a very high risk pregnancy situation like I did with Lucy, Nora and Callum. But because Rhogam is available, she simply receives an injection during pregnancy and afterwards and has never developed anti-D antibodies. Her two year old son and the baby she is currently pregnant with are both safe because of the Rhogam medication.
The Rhogam medication is made from plasma containing anti-D antibodies, which would not be possible without donors. If you are interested in becoming a donor, check out the Grifols website and see if there is a donation center near you. Feel free to contact them with any questions you have. Also please share this blog post so we can reach lots of potential donors. Thank you!
If you have Rh-negative blood, you have the ability to produce anti-D antibodies, which are needed to create an important Rh immune globulin medication given to women who are Rh negative during and after pregnancy to prevent hemolytic disease of the newborn (HDN). A condition where the immune system of a mother who is Rh negative attacks her baby’s Rh positive blood often resulting in the death of the baby. To learn more about our anti-D program, details and locations to donate, visit:
As with all of my anti-Kell posts, this one also applies to the other red cell antibodies during pregnancy; anti-D, anti-c, anti-E, anti-FYA, anti-Jka, and so on.
One of the best ways you can protect your baby is to find out exactly how your baby is doing, and one of the best ways to know how your baby is doing is to know exact test results (assuming your MFM is performing the right tests.) Often, doctors do not automatically give out exact test results but give their interpretation of the results instead. “Your baby is doing fine” or “Your results are in the normal range” or “Baby’s numbers have increased a bit this week but we will just keep an eye on him and scan again next week.” With most conditions this is the norm; doctors interpreting the results into understandable, bite sized sentences that patients can grasp easily. But most conditions are more common and doctors encounter patients with those conditions on a regular basis. Our disorder is far more rare and MFMs encounter it less frequently than other pregnancy complications they deal with. Your doctor might not be up to date with the best practices regarding monitoring and treatment for your baby; and yes, even at the best hospital in your state or the best hospital in your country. This is why it is so important to get your specific test results, even if you aren’t exactly sure what to be looking for at first. Numbers are concrete. You can find out specific information with your number in hand. You can use those numbers to help the doctors protect your child. But if you just have your doctor’s opinion, you can’t help advocate for your baby or make sure you are getting the correct treatment.
Sometimes it is awkward to ask for the exact number after your doctor has concluded, “Everything looks great!” or “The numbers are a bit elevated but baby should be ok for now.” Some doctors might take it as a challenge, an irritation in their busy day or as a simple question that they are happy to answer for you. Some doctors like it when their patients want to be educated and involved in their care decisions. Regardless of how your doctor responds to your inquiries, those are YOUR numbers. They belong to you and your baby and the medical professionals are required to give you what belongs to you if you want it. Don’t feel bad for asking. Think about when your baby is finally born and they put her on the scale and you anxiously wait to see how much your bundle of love weighs. Now imagine the nurse writing the number down on your chart and not mentioning it to you. You ask for baby’s weight and they say, “Oh, it’s in the normal range,” or “It’s a bit higher than average.” Would you be ok with that? No! You want to know how much your baby weighs! We expect to receive those numbers after baby is born, but sometimes we are willing to let these other, far more important numbers go. These numbers can determine whether your baby lives or dies, so GET YOUR NUMBERS and record them in some way (notebook or phone, etc.) Envision yourself standing in front of your baby ready to fight the antibodies that threaten your child. These numbers are the weapons in your hand, ready to defend and protect. Here is a list of the most important numbers you need to record during your alloimmunized pregnancy:
Antibody Titer: Your antibody titer gives you an idea of the amount of antibodies present in your blood. The monitoring and treatment you receive is often based on your antibody titer, and these ultrasounds and treatments are very time sensitive (my daughter might be alive if we had done the scans and treatments in time.) As soon as you find out you’ve had a positive antibody screen ask your doctor for your antibody titer and write it down, or ask for access to your medical records so you can look for it yourself.
PSV or MoM Number: This is probably the very most important number you will get during your pregnancy because it shows if and to what extent your baby is being affected by your antibodies. This number is far more important than your titer even. At every MCA scan your doctor is looking at the PSV (peak systolic velocity) number and it will show on the screen when they are doing the scan. You can look on the screen and try to find it or ask for the number. You use the PSV number and your exact gestation to determine baby’s MoM (multiples of median) which shows if baby is anemic or not. An MoM of 1.5 or over shows that baby needs an intrauterine blood transfusion. I use this website to calculate my MoM https://medicinafetalbarcelona.org/calc/ Click on Anemia then click on Cerebral Doppler, then plug in your gestational age and your MCA PSV number and it will calculate your baby’s MoM. Or you can ask your MFM for baby’s MoM instead of the PSV if you prefer. I kept a notebook with all of Lucy, Nora and Callum’s weekly PSV and MoM numbers so that we could compare them to each other and track the numbers to see if there was an upward trend starting (those often lead to IUTs.)
Beginning and Ending Hematocrit/Hemoglobin: These numbers are only important for the women who need IUTs. The beginning and ending numbers are important because they show how anemic baby is before and after the IUT. It always helped me during the IUT procedure to focus on the numbers, so the doctor would call out the hematocrit once they checked baby’s blood and I tried to remember the number instead of focusing too much on what was happening. The doctor called out the ending hematocrit once they got the blood to baby. If the doctor didn’t call out the numbers, I asked and it always made me feel better. If you prefer not to think about numbers during your IUT, just ask the MFM what the beginning and ending hematocrit/hemoglobin (some doctors prefer to use one or the other) was once you are in recovery for monitoring after the procedure. Knowing how anemic baby was before and after the IUT can help you answer all kinds of questions like- “Did my baby actually need an IUT?” “How long can my baby wait until the next IUT?” “Did my baby get enough/too much blood during the procedure?” “Was my baby anemic enough to cause future problems?”
*Side note- It is important to remember that the MoM does not always correlate with an exact hematocrit in baby, so the doctors can’t know EXACTLY when the best time to transfuse is. The MCA scan gives an idea of how anemic baby is and the 1.5 MoM cutoff is the best tool they have for knowing when to transfuse. Some babies will be more anemic with an MoM of 1.5 than other babies with the same MoM. To give you an idea of how my babies’ MoMs correlated with their hematocrits here are their beginning numbers for their first IUTs:
Lucy- MoM=2.5 Beginning hematocrit=6
Nora- MoM=1.6 Beginning hematocrit=26
Callum- MoM=1.49 Beginning hematocrit=28
Bilirubin: This number is very important after your baby is born. The type of jaundice our babies deal with is different from normal newborn jaundice. Our babies’ bilirubin usually peaks between days 4-6 so make sure they continue checking bilirubin until baby is past the peak days. Hemolytic jaundice often has to be treated more aggressively than normal newborn jaundice so you have to make sure they are tracking baby’s bilirubin closely and treating it appropriately. It is very common for our babies to be discharged too early while bilirubin is in the “safe” zone but still rising and then the babies have to be brought back and readmitted with high bilirubin levels later. High bilirubin can sometimes cause permanent brain damage, but it is completely preventable, so these numbers are very important. Also be sure to ask how old baby was at the time of the blood draw since that affects treatment levels. I think Callum’s bilirubin level at birth was 5, which would not be a big deal if he was a couple days old, but right at birth that is considered a high number. So get the bilirubin number and how many hours old baby was at the time of the blood draw. This is a good tool to use to find out if your baby’s bilirubin is high enough to need treatment: https://peditools.org/bili/
Hematocrit/Hemoglobin: These numbers are very important after baby is born. These numbers tell you if your baby is anemic and whether baby needs a blood transfusion or not. Transfusion levels vary depending on your specific circumstance so the Support for Antibodies in Pregnancy group is a great place to ask questions about whether or not your baby might need a transfusion. You can also email me if you have questions about this. Of course, we cannot make medical decisions for you but we can share our insights and experiences and you can combine that information with your doctor’s suggestions. When Callum was in the NICU after his first post birth transfusion the doctors wanted to let him drop below a hematocrit of 25 before transfusing. That isn’t super low, but I felt uneasy about waiting too long to transfuse since he was dealing with so many other preemie issues on top of the anemia. He got to 26 and was having more oxygen desats and heart decels and wasn’t feeding as well as he had been. I had a suspicion that if we handled the anemia the other issues might improve as well. I spoke to his neonatologist about this and said that I felt strongly about going ahead with the transfusion. She heard me and agreed to let them transfuse even though he hadn’t dropped below 25. Callum improved so much after his blood transfusion. No more oxygen desats or heart decels, his feeding improved rapidly and he was discharged from the NICU two days later. Make sure that your baby’s hematocrit or hemoglobin is followed after discharge from the hospital. Delayed onset anemia is normal for our babies since our antibodies linger in their bloodstream and can continue to destroy their red blood cells for weeks after birth. One of my friends lost her beautiful daughter because none of her doctors followed up with blood work after her healthy baby was discharged from the hospital. By the time they caught the delayed onset anemia weeks later, it was too late. Dr. Moise did not allow Nora to be discharged from the hospital after birth until we had an appointment set up with a pediatric hematologist the following week, even though her numbers were perfect and she wasn’t anemic at all at birth. With both Callum and Nora we had weekly blood draws to check hematocrit and hemoglobin and both babies needed transfusions a little over a month after birth.
Ferritin: Most of you will not have to worry about this number at all, but it can be very important if your doctor wants to give baby iron supplements after birth. If your baby had IUTs or was Coombs positive after birth, do not allow the doctors to give baby an iron supplement unless they have checked baby’s ferritin levels first. The ferritin levels show how much iron the body is storing. Doctors often mistakenly equate hemolytic anemia with iron deficiency anemia and want to treat babies with extra iron. When a baby is given a blood transfusion, in utero or after birth, they are given adult donor blood which has adult level iron content. This means our babies are usually overloaded with iron so adding more iron can be dangerous. Since our babies aren’t anemic from low iron (they are anemic because the antibodies have been destroying their red blood cells) adding more iron won’t help their anemia at all. When Callum was in the NICU, after four blood transfusions (3 in utero, 1 post birth) his neonatologist wanted to give him an iron supplement. I told him I would only allow it if they checked his ferritin levels first since he didn’t have iron deficiency anemia. They agreed to check his levels and they were 1,216! The normal range for a baby his age was 25-250. We had to consult a hematologist and do some liver function tests and even discussed possibly doing a liver biopsy to check for liver damage. I’m so glad we didn’t give him MORE iron, adding to his extremely high levels. So, if you have a Coombs positive baby (who might need a blood transfusion in the near future) or have a baby who has had a transfusion, only allow the doctors to give an iron supplement if they have checked the ferritin and baby has low levels.
Remember how useful these numbers can be in your fight to protect your baby from your antibodies. If you get your numbers and then realize that you aren’t sure what to do with them, feel free to email me with any questions you have, or come join our Support for Antibodies in Pregnancy Facebook group for access to about a thousand other women who have been or are going through the same thing.
Last year at this time my newborn Callum was in the NICU and I was staying at the Ronald McDonald House with two year old Nora and my Mom (most of the time.) Since Callum’s first birthday I have been surprised and kind of annoyed by the waves of emotion I’ve been experiencing. The days he spent in the NICU replay vividly in my mind. That night when Josh had to drive Liam and Asher back to Tuscaloosa and I was left alone in the hospital recovering from my c-section and I hobbled down to the NICU at 2 am because I missed my baby so much. I couldn’t hold him yet, I couldn’t breastfeed him or have him in my room, but I COULD look at him, so when my thirst for him just could not wait another minute I walked all the way to the NICU without a wheelchair for the first time, alone. When I finally saw him the pride and goodness of my boy filled me up, but the nurse was visibly irritated by my presence. She side eyed me standing there next to his bassinet and I asked if he had taken anything by mouth. I had been waking up every three hours to pump and then getting up to wash all the pump parts and labeling the breast milk and sending it to the NICU, so I was proud of the breast milk that was available for him now. “Yeah, he had formula and did a pretty good job with the bottle.” “Oh, why wasn’t he given breast milk?” I asked. “I just reached in and grabbed whatever was there and it happened to be formula. He’s been crying for the past hour and I just got him to sleep. It’s not even feeding time so please don’t touch him. It’s not really time for you to be here.” she said. I was stunned into silence. Right after he was born my nurse had told me I could go down to the NICU and see my baby any time I wanted. But now, the one thing that brought me comfort, being able to physically be present with Callum and see him in the flesh, this nurse was taking it away from me? And he had been screaming for an entire hour without his Mommy. And the milk I had worked so hard to pump for him was left in the cooler. I didn’t say anything and stood there like a little kid who just got in trouble for coloring on the walls. Post pregnancy hormones coursed through me and I crumpled into tears and just sobbed, heaving and heaving. It was so embarrassing. Snot and tears trickled down my face and I stood rooted there, body aching from being on my feet for so long but I didn’t know what else to do. The nurse felt awkward and handed me a tissue. I wiped my face and hobbled out the door, down the hall, into the elevator back up to my hospital bed, crying the whole time. I know the nurse probably had a long day and was tired of taking care of somebody else’s screaming baby and wasn’t trying to hurt me, but I felt completely defeated. Now in hindsight I’m irritated with my self for not standing up to that nurse and explaining that if they had certain visiting hours for parents they should have told me, and please give him the breast milk I sent for him. Why do I even care? Callum is literally playing right in front of me right now and he is perfectly healthy and he’s with me ALL OF THE TIME. He has no recollection of that incident so why am I wasting my emotional energy on it right now?
I think having a baby in the NICU is hard for any mother but it’s even harder after you have lost a baby. It’s hard to be empty handed after giving birth, AGAIN. At the time I was in survival mode…pump, go visit Callum, drop off milk, breastfeed, go back to be with Nora, take care of Nora, eat, pump, head back to Callum, etc. (there was very little sleeping going on.) But now, in hindsight, I can make a bit more sense of how I felt. For some reason while Cal was in the NICU I felt like my parental rights were waived and the nurses were his parents, calling the shots. I had to be given permission to hold my own baby or to even be there by his side. I had to ask if I could touch him, feed him, hold him, change him. Most nurses were amazing and I was overcome with gratitude for these women who poured so much love into my baby. They even sent a card to our house after we got home with Callum congratulating us and thanking us for choosing them to care for Callum, which was so amazing. But my mind flits past that and settles on the one nurse who, after I had just met with a therapist about how to handle a preemie, broke all the “rules” I had just been taught and roughly picked up my baby, startling him into screams. She moved quickly and suddenly with him and was not gentle. He cried and I just watched because I wasn’t the parent in the NICU. But if my newborn had been in his little bassinet beside me in my hospital room recovering after the birth and a visitor handled my baby that way I would immediately take him out of her arms and not allow her to hold him anymore. The NICU was different, though, and I had to leave my son there all night with that nurse, and I felt sick leaving him there. I couldn’t sleep either because I worried about him. The next morning he was fine and I felt silly for my strong emotions and fears. But now these experiences replay in my head and I grieve again for the days I lost with Callum. I wonder if I should have been more assertive as his mother? Maybe I was too assertive? Since I felt like I wasn’t the parent, it was hard to bond with Callum like I should have in those early days and that is what grieves me the most, I think. I didn’t get to start truly bonding with him until he came home and I was his mother. People asked ME for permission to hold him and I had the choice not to leave him with anyone I felt uneasy about.
I remember how painful it was after Lucy died to hear women complain about how hard the NICU was. I equated the NICU with “live baby” and envied women who got to experience the NICU. In a way I felt like I was one of the lucky ones while Callum was in the NICU which gave me a weird sense that I was not allowed to grieve the losses I was experiencing. They were on such a smaller scale than the losses of the women who gave birth to still babies. But not grieving properly means the grief can fester and erupt later so now, one year later, I am grieving for the things I lost with Callum in his early days. Tomorrow will be one year since he was discharged from the NICU and I’m hoping this weight will lift and I can move on. I am so thankful to have him home now, healthy and thriving, and I revel in the fact that I get to be his Mommy, just me and no one else.
Do you have anti-Dia antibodies? If you do, I need your help! Access Biologicals, the company I regularly donate plasma for, is searching for someone with anti-Dia antibodies to donate for them. They will fly you to one of their donation centers, provide a hotel if needed and pay you for your donation. It’s a great way to get away for a little alone time, help other women with antibodies and make a bit of extra money. Access Biologicals always treats their donors very well (I know from first hand experience!) If you would like to donate and you live in the U.S. or Canada just email Robert Pyrtle at [email protected] or you can comment on this post or email me at [email protected]. Thanks!
One year ago today I went in for my fourth IUT, which had been delayed due to hurricane Irma, and I ended up having a baby instead! This past year has been a whirlwind of joy and answered prayers and busyness of daily life with four kids. And underneath it all there has been the peace of knowing that our family is finished growing and our miracle boy is here healthy and safe.
Callum is a sweet, happy boy who loves his family, his pets, all the food he can cram into his mouth, cars and balls and water and books. He is crawling and pulling up but not walking yet. He can say Mama, night-night, hey, cat, eye, uh oh and a few more I’m forgetting right now. He is officially weaned from the breast and drinks Ripple milk instead (pea protein milk) since he is still dairy intolerant. My dream of having a playmate for Nora is coming true day after day as Callum and Nora form a close friendship and enjoy each other more and more as Callum grows.
I have been thinking all day about how to sum up my emotions in one short blog post. I’ve been reliving Callum’s birth all day, which was traumatic and beautiful all at once. I’ve been overwhelmed by waves of gratitude that wash over me throughout the day. Sometimes it almost feels like the breath is knocked out of me when I think about all the miraculous things God has done for me. I remember on Lucy’s first birthday how heavy the grief was, knowing all that we had missed in that one year; knowing how it felt to live an entire year without my child and looking ahead to the many years I still had to experience without her. I thought the weight of it might crush me. Conversely, on Nora’s first birthday and now, on Callum’s first birthday, I have been overwhelmed by the wonder of their lives. Being able to love Callum in the flesh and to watch him grow over the past year has been such a joy and an honor. An unexpected gift. A whole year of memories and experiences that I can treasure for eternity. A whole year of learning who he is, what his voice sounds like, what color his eyes are, knowing his scent and feeling the weight of his warm little body in my arms. Breastfeeding him for 11 months, singing to him in the dark while the rest of the house sleeps, hearing his first word, watching the love grow between siblings, seeing him snuggled up on his Daddy’s shoulder. Just so much goodness. I can’t do it justice with my words. Thank you to everyone who prayed for us and supported us on our journey to Callum. We are so thankful for our boy. Happy birthday Callum! God has great and mighty plans for your life.
*TRIGGER WARNING* This blog post includes my experiences through three very high risk pregnancies and discusses stillbirth. There are some sections specifically written for the women who have been given a poor or fatal prenatal diagnosis like we were. If you have a less serious high risk diagnosis, I suggest skipping over the “Go there once” and “Prepare” sections.
“So, there’s a problem with your blood work.”
And just like that my world changed forever.
Is there anything more primal than a parent’s fear when they realize their child is in danger? There is no terror quite like it. After two healthy, normal pregnancies I was sent flailing into a terrible new world when I found out at nine weeks that my third pregnancy would be an extremely risky one. My baby’s life was in danger and there was very little I could do to protect my child. Not only that, but I was also told that all of my future pregnancies would be high risk as well. It wasn’t just this baby who was in danger, but all of my future children as well. My lifelong dream of a big family seemed to evaporate in that moment. The fear and anxiety consumed me. It was always at the forefront of my mind. Suddenly the joy and innocence of pregnancy and child birth were gone and instead I was left feeling terrified, vulnerable, and broken. I couldn’t look forward to my due date with anticipation like before. I couldn’t make plans for this baby. When I thought about the coming months, I was flooded with a fear stronger than any I had ever felt in my life.
I am now on the other side of my three high risk pregnancies. As a quick recap, I was diagnosed with anti-Kell antibodies and my body attacked my babies in utero making the pregnancies very dangerous for them. My daughter, Lucy, was stillborn a few days shy of 20 weeks in my first high risk pregnancy. In my second high risk pregnancy after a lot of intervention, my daughter, Nora, was born healthy at 37 weeks 6 days. In my third high risk pregnancy, after lots of intervention like Nora, my son, Callum, was born at 34 weeks and 4 days and spent almost three weeks in the NICU. I have learned a lot from my journey through these pregnancies and would like to share some of the things that helped me survive them. Not only did I survive them, but I learned to find joy; to seek out and appreciate the joy, no matter how minuscule it was, and make it my own in the midst of hardship and fear. I believe you too can not only survive your high risk pregnancy, but find the joy and the beauty in it as well. Since every pregnancy is different, what helped me might not be beneficial to you so feel free to discard any suggestions that don’t feel right for you personally or might not fit your situation. If I could sit with you face to face over a cup of tea or coffee and share my experience with you, this would be my advice:
You’re going to feel what you’re going to feel
There are a lot of suggestions in this blog post but when it comes down to it, most of the time, you are going to feel how you feel. Your emotions are largely out of your control when you are pregnant, and especially when you find yourself stuck in the middle of a high risk pregnancy. Anger, sadness, elation, fear, depression, gratefulness, anxiety, hope, guilt. All normal. Try not to be hard on yourself for feeling how you feel. Emotions are just emotions and they are temporary. Emotions aren’t truth, thank goodness. It’s ok to feel how you feel.
Try not to compare this pregnancy with your previous pregnancies or with others’ pregnancies.
As a mother I have struggled not to compare my children with other children and not to compare myself with other mothers. In the end it only leads to feelings of inadequacy or pride depending on who came out on top as the “better mom” or “better kid.” The same goes for our pregnancies. We cannot expect every child to be exactly the same and we can’t expect every pregnancy to be the same. One of the biggest sources of pain for me was comparing my high risk pregnancies (especially the first one with Lucy) to my previous two normal pregnancies. They were such different experiences that I felt like I couldn’t help but constantly compare them. And when I compared my high risk pregnancy to my “normal” pregnancies it always felt like the high risk pregnancy came up lacking. I also struggled not to compare my difficult pregnancy with the experiences of the women around me who were having normal, easy pregnancies that ended with healthy babies. It wasn’t fair! Why did my baby have to suffer? And why did I have to go through so much agony when they got to live on blissfully enjoying their healthy pregnancies? The jealousy and rage could consume me if I dwelt on it too long or if I saw one of my pregnant friends complaining on Facebook about how hard it was to drink the glucose drink for her diabetes test or how hard it was when her healthy growing baby danced on her bladder at night. What helped me the most was remembering that each baby is unique and so is every pregnancy. Each one of my children is so different and they each have their own quirks, faults, strengths and unique personalities. Each pregnancy also has it’s own difficulties and it’s own beauties. This high risk pregnancy was part of my baby’s unique story and I decided that I was along for the ride, no matter how difficult it might be. Lucy’s story is her life story. Nora’s story is hers, and Callum’s is his. No matter how hard some of the details are, they are theirs and since I am their mom I accept and cherish every one of their unique stories. I don’t want some other lady’s pregnancy because that’s HER baby’s story. This is MY baby’s story and I will own it and appreciate it as their unique story. Protect this perspective as much as possible. For me, this meant unfollowing certain people on social media or staying off social media when I was feeling vulnerable or frustrated. I also did not attend stressful events like baby showers or go near the baby section of stores.
Research, get a second opinion, make a treatment plan.
When people are facing a new medical diagnosis they are often told by well meaning friends and family, “Don’t google it!” in an attempt to protect the person from unnecessary anxiety. But protecting your baby is much more important than protecting your emotions. I actually found that the more I understood about what was going on inside my body and the more I understood about the risks and treatment options, the more confident I felt. Google it and research your condition as much as possible. Educate yourself so that you can be an advocate for your child. You are the parent and you should play a vital role in your child’s medical treatment decisions. If you are facing a serious medical diagnosis, get a second opinion. Then make a treatment plan or course of action plan that you feel confident about. In my first high risk pregnancy I did not feel comfortable with my treatment plan and I didn’t get a second opinion because it would have meant traveling out of state for medical care. We were told that our hospital was exceptional by those around us so we trusted the MFMs’ treatment plan even though we felt uneasy about it. Our daughter died as a result. With my two subsequent pregnancies I spent hours researching, asking questions and educating myself about anti-Kell antibodies and the treatment options. We traveled out of state for the best medical care possible and I had a treatment plan that I felt very confident about. I knew that if we lost our baby, I would have done everything possible to save her and that brought me some level of peace. Both babies survived because they received the correct medical treatment.
Baby’s life over everything
This one is specifically for the women with very high risk pregnancies who don’t know if their baby will survive. I know that I don’t have to remind other moms of the importance of their baby’s life. It is the reason you are reading this blog post, it is at the heart of all you do. But I do just want to remind you not to let things that are temporary or less important prevent you from doing everything possible to save your baby. If I had a list of the things in my life from most important to least important, which of these things would be at the top? Job, finances, keeping regular weekly schedule, personal comfort, MFM’s feelings, older siblings comfort and regular schedule, the opinions of others, your baby’s life. Your baby’s life is at the top of the list. Do not let something that is lower on the list get in the way of doing everything possible to save your baby’s life. Even if you lose your baby in the end, it will be very important to know you did everything you could have to save your child. With my second high risk pregnancy I decided that I could not stay with the MFMs at UAB in Alabama who made mistakes with my previous baby so I drove 11 hours to Houston, Texas to be treated by Dr. Ken Moise. I felt a little irrational when I decided to go that far with my four year old in tow (on his birthday nonetheless!) It was inconvenient, we didn’t have the money (we are still trying to get out of debt three years later.) It was really hard to leave my oldest son, who was in kindergarten at the time and to leave my husband, and it was sad to have to quit my part time job, but when I walked into The Fetal Center for my first appointment I felt a great weight lifted off my chest and I knew my baby was in the best hands possible. It immediately alleviated a lot of the stress I had been carrying around and I felt peace knowing that I was doing everything in my power to save my baby Nora.
Grieving is normal, regardless of outcome.
Many things are lost in a high risk pregnancy and it is normal and appropriate to grieve for these things. Dead dreams, lost innocence, guilt, fear, painful interventions, inability to enjoy the pregnancy and difficulty accepting what is happening are just some of the things a pregnant woman might face during a high risk pregnancy. During all three of my high risk pregnancies I struggled at some point with heavy depression and anxiety. It wasn’t until my third one that I was able to accept the depression as part of the grieving process and I learned not to over analyze it. I knew that it would be temporary, just like the morning sickness, the back pain and the weekly MFM appointments. Let yourself grieve and mourn because you are going through a very real loss, even if you do end up with a healthy baby. The one thing you should not grieve is the loss of your baby because your baby is alive inside you right now. The time to mourn for your lost child is after you have lost your child, if that ever happens. Try not to mourn what isn’t lost yet.
Take lots of pictures
When I was pregnant with Lucy I was so terrified and often felt hopeless, so I purposefully did not take pictures of my growing baby bump. I thought it would protect me from more grief in the end if we lost her. I was wrong. After she died I desperately wished I had more pictures of my Lucy belly, since those were some of the only pictures I had of her while her heart was still beating. When I was pregnant with Nora I made sure to take lots of pictures and I posted them often on social media because I wanted to celebrate every week I got with her. I wanted to document her life and find joy in my growing belly and taking pictures was an exercise in hope for me. I knew that I would cherish the pictures whether she survived or not.
Go there, ONCE
The fear of losing my baby consumed me when I found out my baby could be in danger. There was a constant feeling of dread that weighed me down, like a heavy blanket. Over and over again I wondered what the future would look like. Would my baby survive? Would I survive if I lost my baby? What would I tell my older kids? Subconsciously I would fast forward and live out the worst case scenario in my head, over and over again. This is not healthy and it is not helpful to anyone, including your baby. I decided to go there in my mind, ONCE, and try to make any preparations needed just in case my worst fears came true. Then, I did not go there again. If I felt my mind slipping and I started imagining the worst, I would purposefully stop my thoughts and remind myself that I had already thought through that scenario and prepared for it as much as possible. There was no need to go there again. As a side note, I wasn’t always able to control my thoughts but I tried my best.
Prepare
As I just mentioned, it helped me to feel as prepared as possible for the worst, just in case it happened. I learned with Lucy, that no amount of bracing myself emotionally or trying not to get attached or not allowing myself to hope, could prepare me for the loss of my child. None of it helped ease my grief in the end. But there are some practical things that I wish I had done ahead of time that would have helped a little bit. When I was pregnant with my baby Nora the doctors gave her a 0% chance of surviving the pregnancy, so I felt that a stillbirth was imminent. I had her diaper bag already, since we had bought it for our baby Scarlet, but never used it in the end because the adoption fell through. I removed all of the cute things we had for Scarlet from the bag and packed the bag with tiny preemie hats, little bows and headbands, a couple of cute preemie outfits and a beautiful, soft pink blanket that I bought just for Nora. All of these things could have been used if Nora had been stillborn. The hats, bows, tiny outfits and blanket would have been used for pictures and then saved as precious momentos of our daughter. I purposefully did not pack pacifiers, diaper cream or other things needed for a living baby because I did not want to face those emotional triggers if we lost our daughter. We also picked a name out as soon as possible since we truly had no idea when we would need to name our daughter; 16 weeks? 20 weeks? 30 weeks? Having name ideas ready helped me have one less thing to worry about. We also were very honest with our two sons about everything throughout the pregnancy, which is a personal decision that might not be right for your family. For us, we knew it was best to tell the boys (3 and 5 at the time) at the very beginning of my pregnancy with Nora that Mommy was pregnant but we did not know if the baby would come live with us in our house, or go live in heaven with Lucy. We didn’t have the option of not telling them about the pregnancy because I had a permacath placed and two very obvious tubes coming out of my chest and we would be relocating for the pregnancy so it was impossible to hide. We told them that the baby would get sick in Mommy’s tummy and need medical help and we could pray that she would survive. But God was in control and we could always, always trust Him. They understood and handled everything better than expected, as children often do. Once I had the diaper bag packed, the name picked out and the boys informed, I felt as prepared as possible for the worst. Then I made an effort not to allow myself to go there again in my mind. I could remind myself that everything was ready in case we lost her and I put the idea of my baby dying far up on the shelf in the back of my mind, in a box, padlocked and shut away. I knew it was there, but I chose, day after day not to focus on it.
HOPE.
This one turned out to be one of the hardest for me, especially after losing Lucy during my first high risk pregnancy. We were given no hope with our baby Nora once we discovered that she had Kell positive blood and would be attacked in utero by my antibodies. The doctors said she would not survive. But I think hope is crucial to surviving and finding joy during a high risk pregnancy, no matter the odds. I learned with Lucy that whether you have false hope or you “prepare” yourself emotionally for the loss of your baby, if you do end up losing your baby the grief is still the same. Deciding not to have hope during your high risk pregnancy will not shield you from the pain of losing your child if your baby doesn’t make it. But hope during your pregnancy is life giving and I like to think that your baby feels that hope running through your veins into her little body. Yes we are afraid and we worry about our babies and we stress about the details of the disorder or we dread the possibilities, and maybe it isn’t possible to feel hopeful at the moment, but we can at least leave room in our hearts for hope. Even if it’s just a tiny space, leave some room for hope. One ounce of hope is more powerful than 10 tons of fear. You never know what miracles might happen. These are what my babies look like today, the ones who were given no hope of surviving, the ones we were told to terminate:
Focus on the next milestone
I quickly learned that if I looked ahead to my due date or afterwards, it only stressed me out because it felt like I was pulling down that padlocked box I had put up high on a shelf in the back of my mind. Instead, I focused on the next milestone and prayed about making it that far. Seeing a heartbeat on the early ultrasound, getting through the surgical placement of my port and permacath, making it to the second trimester, first MCA scan, getting far enough along for baby to have an IUT if necessary, the next MCA scan, the first IUT, making it to viability with a heartbeat (the biggest milestone for me!) 28 weeks, etc. Sometimes the goal was just to make it through the day. This helped me feel a little bit more in control to have small goals that felt attainable.
Get a home doppler.
This is another personal decision that might not be right for you, but it helped me a lot so I am including it. When I first got my home doppler I knew I had to set up some rules for myself before trying to use it because I knew it could end up creating unnecessary anxiety. I decided to only use it once a day at the most and to only try 15 minutes at a time to find baby’s heartbeat. I know I am not a medical professional and have not been trained to use the doppler so it was ok if I didn’t find baby’s heartbeat right away (especially early in the pregnancy.) I gave myself 15 minutes to find the heartbeat and if I didn’t find it within that time I would put my doppler away and do something else. Once I was out of the first trimester I was always able to find the heartbeat within ten minutes. I watched Youtube videos showing how to find baby’s heartbeat with a home doppler and that helped me figure out how to do it. Another rule I had was kick counts over doppler. If baby wasn’t meeting the kick count, but I could still find baby’s heartbeat, I still went in to have baby checked out. Just because I could hear baby’s heartbeat it didn’t mean baby wasn’t in danger. It just meant baby was alive. But the home doppler was a godsend in those irrational moments when I would suddenly feel panic wash over me and I would think, “My baby is dead I know it!” Just hearing the sound of my baby’s heartbeat would calm me down and I would sit listening to the thump, thump, thump until my own heart stopped racing. This was especially needed after having a procedure like the amniocentesis, surgical placement of my port or IUTs when I was very worried about baby’s well being. The purpose of the home doppler is to bring you peace and not to create more anxiety. It is also not meant to be used by you to diagnose your baby. If you start sensing that the doppler seems to be causing more stress than reassurance, sell it or give it away.
Ask your doctor about antidepressants or anti-anxiety medication
Again, this might not be for everyone, but if you are struggling with anxiety or depression during your pregnancy, talk to your doctor about your options regarding medication. I started taking Wellbutrin after Lucy died and my doctor and I agreed that it would be best for me to continue taking it during my pregnancy with Nora since it was such a high stress situation and I struggled with PTSD. The Wellbutrin is considered safe during pregnancy and breast feeding and is non-habit forming so I could stop it at any time in the future if I felt like I wanted to. The Wellbutrin helped keep my anxiety from growing to a point where it was out of my control. It also helped prevent postpartum depression after Nora was born. I took it throughout my year of breastfeeding Nora, through my pregnancy with Callum and during my year of breastfeeding Callum as well.
Find encouraging verses, pray them over your baby.
This is another personal one that might not feel normal for those who are not people of faith. But God is still God and He loves your baby deeply and He is always available to you, whether you pray on a regular basis or you never have in your life. It might flow easily for some and it might feel really awkward and forced for others. I encourage you to give it a try. Prayer is the single thing that helped me survive my high risk pregnancy the most and enabled me to find the joy along the way. There is something so purely peaceful and reassuring about entrusting your child back to God and saying, “Protect my baby. I trust you.” He is the one who has ultimate control over the situation. I found several Bible verses that encouraged me and I read them and prayed them over and over again. They were written in my medical journal that I took with me to every appointment so that when I was in the hospital or the MFM’s office and I opened my journal I would see the verses. I tried to read them at night before going to bed since the middle of the night is often when our fears loom larger than they are in the daylight. I found that just like Peter in the Bible, when he was walking on the water towards Jesus in the midst of a raging storm, if I looked at the giant waves threatening me, I would start to sink. But if I looked to Jesus and focused on His face and His promises, I was saved. Reassured. Lifted up out of the swirling waters that threatened to drown me. These are some of the verses that helped me the most during my high risk pregnancies (I’ve also included a prayer with each verse that you can pray if you aren’t sure what to say):
Zephanaiah 3:17 The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quiet you by His love; He will exult over you with loud singing.
Prayer: Lord, I know that you are in my midst; you are right here with me at this very moment. Quiet my anxious heart by your love. Fill me with your peace. You are the mighty one who will save. I pray that you save my baby. Strengthen my baby for this journey and let my baby feel your love and peace right now.
Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you. I will uphold you with my righteous right hand.
Prayer: God, you tell me not to fear but I am afraid and I’m worried about the future. Take my fear away and replace it with trust in you. Come and help me, strengthen me and uphold me with your hand. I need your reassurance. Thank you for loving me so much. Thank you for holding me up when I cannot stand on my own.
Isaiah 26:3 You keep him in perfect peace whose mind is stayed on you, because he trusts in you.
Prayer: When the waves are so big I feel I will drown, help me keep my eyes on you, draw me out of that mind space of fear and dread. As I look to you for comfort, overwhelm me with your perfect peace and help me focus my mind on you. Thank you for being bigger than any problem I have to face today.
Romans 15:13 May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope by the power of the Holy Spirit.
Prayer: Lord, you say you are the God of hope and I choose now to trust in you. I am trusting you with the things I cannot control. Nothing is out of your control and I feel the peace of handing it all over to you. Fill me with your hope and peace, OVERFLOW my heart with peace. Not only peace and hope, but also joy. Please help me to find joy today, no matter how impossible it feels at this moment.
Psalm 32:7-9 You are a hiding place for me; you preserve me from trouble; you surround me with shouts of deliverance. Selah. I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you.
Prayer: God, I am scared about what will happen to my baby. I’m so anxious and worried about the future. You are my hiding place. When the storm of fear, worry and sadness swirls all around me I know I can find safety in you. Surround me and my baby with protection and safety. Preserve us from trouble. Give me wisdom along this journey. Help me make the right decisions regarding my baby’s medical care. Give my doctors wisdom and help them make the best decisions for me and my baby. You say you will counsel me with your eye upon me. Thank you for loving me so much that you keep close watch over me and my baby.
Psalm 18:31, 32 For who is God, but the Lord? And who is a rock, except our God? -the God who equipped me with strength and made my way blameless.
Prayer: Oh God, be my rock and my stability. My whole world feels shaky and terrifying right now as I wait and hope for my baby’s safety. You are my strong foundation and because of you, I will not be shaken. Thank you for being so strong and for being my anchor. Equip me with strength to get through today and tomorrow and the rest of this pregnancy. Equip my baby with strength right now, Lord, and wrap my baby in your protection.
Find the Joy
Even in the most terrible situations, even on the hardest days, there are small gifts of joy. Difficulty and sadness do not cancel out goodness and joy. If I have learned anything over the past few years it is that they can exist together. I realized during my high risk pregnancies that if I looked closely enough, nestled there amongst the fear, the pain, the uncertainty and disappointment, there was joy. Sometimes just a tiny drop, but still joy. One of the strongest emotions I dealt with during my pregnancies was dread. I had to endure painful procedures and awful side effects. I found myself dreading the procedures for weeks before they actually took place. I dreaded the surgical placement and removal of my port and permacath. I dreaded my plasmapheresis treatments and especially my weekly IVIG treatments that left me with debilitating migraines, vomiting, terrible muscle pain and weakness. Of all the procedures I experienced, the one I dreaded the most was the intrauterine blood transfusions the doctors had to routinely perform in order to keep my baby alive. One day before one of my IUTs with baby Nora I was so tired of the overwhelming dread that I prayed audaciously for God to not only help me endure the IUT but to actually help me find some enjoyment in it. The next day I purposefully searched for the gifts that I could enjoy, even though I was terrified for my baby and not looking forward to a needle being pushed through my body. “Ok, what can I appreciate about this?” I thought as I put on the thin hospital gown and waited for the nurse to come insert my IV. Well, there weren’t any little kids around who needed something from me. I could be alone (something I often coveted while at home on those overwhelmingly busy days) and I could nap if I wanted. As the day progressed I glimpsed little gifts from God, gifts that were always there but I hadn’t noticed them before. When the nurses lifted me and placed me on the operating table in the freezing operating room, I savored the heavy, warm blankets they draped over me. The warm air that blew under the blankets at the foot of the operating table felt amazing. When Nora’s ending hematocrit was called out to me after they got the blood to her I thanked God for the miracle of the IUT, that these doctors could fill my baby up with fresh, healthy blood even while she remained in utero. The sedation they gave me through my IV calmed my nerves and I appreciated it as I drifted off to take a much needed nap in the recovery room after the procedure was done. I awoke to the sound of my baby’s strong heartbeat thump thumping on the monitor and I thanked God for the best gift- a baby with a beating heart still inside me. Ever since that day when I dread something that I have to endure I pray and ask God to help me find some enjoyment in the experience and He always does. I also realized the one of the best ways to guarantee joy is to be thankful.
During my last pregnancy with my baby Callum I had to travel to Atlanta for my weekly (sometimes twice weekly) appointments which ended up being about 8 hours of driving in a day. It was exhausting and difficult to find childcare for my three kids during these appointments, not to mention all of the other medical procedures. Near the beginning of the pregnancy I wilted as I thought about making the trip week after week throughout my entire pregnancy. How could I do it? I often had to wake up at 3 or 4 am to get to my appointment on time (Atlanta was in a different time zone which didn’t help.) But I prayed and asked God to help me enjoy it somehow and I thanked Him for the hours I got to spend in my car. I decided to use the hours for things I couldn’t do when I was home with my one year old Nora and her big brothers. I prayed without interruption. I listened to podcasts and books on cd and 90s gangsta rap once I got close enough to Atlanta. I packed delicious food for the drive and enjoyed eating in peace (poor Dr. Trevett always wondered why Callum was so active during the ultrasounds and I’m pretty sure it had something to do with the four hours of eating I did leading up to the ultrasound.) I memorized verses and called and talked to friends. I started looking forward to my long drives and I realized that they refreshed me in a way. Once, I almost had to pull over on the side of the interstate because I was laughing so hard listening to David Sedaris’ Me Talk Pretty One Day (strongly recommend!) Tears of laughter streamed down my face, blurring my view of the road, and I realized that my heart was full of joy- right there in a dark and scary place in my life. Belly laughs right there amidst the back pain, headache and nausea while I drove to the ultrasound that would show whether my son was thriving or not. One of my favorite verses is Psalm 4:7 “You have put more joy in my heart than they have when their grain and wine abound.” My personal paraphrase of this verse for my high risk pregnancy was, “You have put more joy in my heart than they have when their pregnancies progress without any problems.” My true source of joy is God, not my circumstances, and nothing can take Him away from me. He can give me more joy in the middle of my high risk pregnancy than those who have easy circumstances. Ask God to give you joy right where you are. Look for the small pockets of joy and you will find them.
Distract Yourself
Once you have done all of the hard work of researching and making a solid treatment plan, working through your emotions and preparing for the future, the best thing you can do is distract yourself. You’ve done everything in your power to keep your baby safe and now you just have to wait without going crazy. Find ways to keep your mind busy and be kind to yourself…family outings, books, Netflix, podcasts, music, shopping, whatever it takes to help pass time. I listened to a daily podcast called Brant and Sherri podcast which was really silly but uplifting and it always helped me when I was feeling very anxious. I also listened to Podcasts during my IVIG treatments and encouraging songs helped too. I tried not to leave any empty space of quiet and inactivity because it was then that my mind would start spiraling.
You are equipped.
I firmly believe that if you are pregnant, you are already a parent. You don’t become a parent the day your child is born. You become a parent when you discover that your child is growing inside you and that is when you start making important decisions for your child. You make medical decisions regarding your prenatal care. You make decisions about what you will and won’t eat in order to keep your baby safe. You make decisions about genetic testing, birth plan, which pediatrician to use, etc. Not only are you a parent already, but I believe that God designed your specific baby for you and He has equipped you to be that child’s parent. He will give you the wisdom, the strength and the love you need to get through this pregnancy because that is what you need to do as this baby’s parent. Every parent is going to struggle in different ways along their parenting journey with each of their children, whether it’s during pregnancy, during the toddler years, teenage years or when their children are adults. Each one of my children needs certain things from me as their mother and many times it requires a dying to self on my part. Awkward confrontations with fellow parents, losing sleep during infant years, hours spent in the pediatrician’s office or staying up late waiting for your teenager to come home. Liam, Asher, Lucy, Nora and Callum have all needed me to parent them in certain ways. Actually, writing this blog post is one of the things I feel I need to do to “parent” Lucy the best way I know how. All of the stress, the agony and the pain of your high risk pregnancy? This is what this child needs from you as their mother. This is your sacrifice for your baby and you are equipped to do these things for your child.
I applaud you if you’ve made it all the way through this long blog post! To wrap things up, I want you to know that YOU CAN DO THIS. I have experienced outcomes on the worst and the best ends of the spectrum when it comes to high risk pregnancies. One pregnancy ended with the death of my child and two of my high risk pregnancies ended with healthy babies. Throughout these experiences God was faithful and He gave me what I needed at the time to get through it. I was not consumed and you will not be either. You are going to get through this.
Lamentations 3:22, 23 Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness.
Every morning when you wake up God has new mercies waiting for you. That includes today, right now. And the best thing is that He has gone ahead of you in this day and in this pregnancy. He is there in the future waiting for you, ready to take care of you. None of this is out of His control. He will never leave you or your baby.
Deuteronomy 31:8 The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.
Today our beautiful Nora is three years old. Usually as my kids grow from baby to big kid I grieve the swift passing of childhood, but after our experience of losing Lucy and fighting for Nora and Callum I feel differently as my kids grow. I savor it all like never before and the baby days gone by are celebrated because they WERE. Nora isn’t just a longing or a dream. She is our beautiful reality and we are loving every minute, every day, every year and every milestone we get with her.
Nora is shifting from toddler to preschooler and is growing in so many ways. She is completely potty trained, has stopped using her pacifier, she sleeps in her big girl bed every night and she can get herself dressed, but she still drinks her milk from a bottle, heated up to breast milk temperature 🙈 All of her other drinks are given in a normal cup or sippy cup. Nora is still the most maternal child I’ve ever encountered. Her favorite toys are baby dolls and her birthday party is going to be a baby doll birthday party, of course. Her favorite baby to take care of is her baby Callum. Every morning when she wakes up she immediately asks, “Where’s Callum?” and he is the first person she wants to see. She tries to feed him, change him, boss him, teach him, protect him and play with him every day. It heals my soul to watch their friendship blossom.
Just as the grief for a missing child resurfaces multiple times a day, so the gratitude for my Nora bubbles to the surface again and again and I drink in her life and her light. Not only do I rejoice at knowing all the little details of her unique personality, but I also relish the fact that I get to raise a girl, my daughter. I get to buy dresses and baby dolls and I get to sign Nora up for ballet lessons this fall. I get to throw a little girl birthday party with pink, sparkly decorations and rainbows and baby dolls. I get to do all the things I dreamed about doing with my daughter and there is still a whole future of possibilities I look forward too. I can’t wait to read my favorite childhood books with her soon…Anne of Green Gables, Laura Ingalls Wilder, Little Women, Junie B Jones, and so many more. I just love being Nora’s Mommy and I cannot express how she has enriched our lives over the past three years. We love her so much. Happy birthday beautiful girl 💜
I’m emotionally and physically exhausted so I’ll make this as quick as possible. Today we got some really bad news and some really amazing news. The bad news is that our amniocentesis results came back and Nora is kell positive like her Daddy and her big brother Asher and big sister Lucy (Asher was safe because I didn’t have the antibodies yet.) This is the news we have been dreading. Now we know that Nora will be attacked by my antibodies at some point, since they are specifically programmed to destroy kell positive blood cells. We don’t know when she will start to become anemic, but we know it will happen at some point. She will need intrauterine blood transfusions to survive and she will have to be born early (35 weeks at the latest.) My hope is to get her to 26 weeks at least. It just depends when it is safer for her to be out rather than in. When she is out she doesn’t have to fight my antibodies anymore, but she has to be developed enough to survive on her own.
The good news is that her MCA scan today was the BEST it has ever been! It was 1.16, down from 1.34 (I think that’s what it was) on Monday. This means that Nora is doing great so far and isn’t being affected by my antibodies. She has been active and looked healthy on the ultrasound today. We also got confirmation from the amnio FOR SURE that she is a girl and there are no genetic abnormalities. Our baby is healthy for now, which is such a miracle, especially knowing that she is kell positive. We (and the doctors) think that it is the IVIG treatments that are keeping her safe from my antibodies so far. I am so glad that I pushed for those treatments and that the doctors agreed to go outside of their comfort zone and try something they had never done before.
Our doctors here in Alabama will not try an intrauterine blood transfusion before 20 weeks, they just don’t have the experience they need. They also told me today that they don’t really feel confident doing a transfusion until about 24 weeks. We know that Nora will eventually need a blood transfusion, but we don’t know when. It could be next week or it could be at 30 weeks, although it is more likely to be early since we lost Lucy at 19 weeks and each pregnancy is supposed to be more dangerous than the previous one. We feel like I need to get to Houston, Texas as soon as possible to be treated by Dr. Ken Moise. He kind of pioneered the plasmapheresis and IVIG treatment for this type of high risk pregnancy and he has a lot of experience doing very early blood transfusions, some even before 16 weeks. He’s the expert and I know he will take good care of Nora and me. We also found out that he is in our insurance network so everything will probably be covered. I emailed him today and he said he can treat me but I shouldn’t come all the way there until we know that everything is set up for my IVIG treatments. If I miss even one treatment it could be deadly for Nora since that is most likely what is keeping her safe right now. So, in about a week or two my mom, Asher and I will be driving to Texas and will be there for at least 7 weeks, assuming Nora makes it that far. This is going to be very hard for my family. I seriously miss Josh so much after even one day of him being at work late. I miss Liam while he’s at school and I can’t wait for him to get home. I can’t imagine not seeing them for weeks. We have no idea how we are going to handle this financially. It will be hard for Josh to work and take care of Liam and be away from me and Asher during such a stressful time. My mom can’t miss that much work so she will need to come back at some point…it’s all very overwhelming to try to work out. We are exhausted at this point. It has been one tragedy after the next over the past two years so we kind of felt like we were starting this high risk pregnancy journey already depleted. We had so much hope that baby Nora would have my blood type and we could relax and recuperate for the rest of the pregnancy.
Ok, enough of my wallowing. There are so many things we are thankful for today, that Nora is healthy and not anemic and that she doesn’t have any genetic disorders. We are thankful for Dr. Moise who is willing to take us on as his patients and who always stops what he is doing to email me back. I am thankful that God’s power is made perfect in weakness (because we are so weak right now) and that we can rely on HIS strength and peace to carry us the rest of the way through. Thank you all for praying for us. I feel like He did another miracle today by keeping her safe even while being kell positive. He is doing amazing things and I praise Him for his goodness to us. Please continue to pray for our Nora girl, that she would be safe and healthy and would LIVE. Please pray that God would take care of the rest of our family during this stressful time. Thank you for all of your continued support and encouragement!
I’m emotionally and physically exhausted so I’ll make this as quick as possible. Today we got some really bad news and some really amazing news. The bad news is that our amniocentesis results came back and Nora is kell positive like her Daddy and her big brother Asher and big sister Lucy (Asher was safe because I didn’t have the antibodies yet.) This is the news we have been dreading. Now we know that Nora will be attacked by my antibodies at some point, since they are specifically programmed to destroy kell positive blood cells. We don’t know when she will start to become anemic, but we know it will happen at some point. She will need intrauterine blood transfusions to survive and she will have to be born early (35 weeks at the latest.) My hope is to get her to 26 weeks at least. It just depends when it is safer for her to be out rather than in. When she is out she doesn’t have to fight my antibodies anymore, but she has to be developed enough to survive on her own.
The good news is that her MCA scan today was the BEST it has ever been! It was 1.16, down from 1.34 (I think that’s what it was) on Monday. This means that Nora is doing great so far and isn’t being affected by my antibodies. She has been active and looked healthy on the ultrasound today. We also got confirmation from the amnio FOR SURE that she is a girl and there are no genetic abnormalities. Our baby is healthy for now, which is such a miracle, especially knowing that she is kell positive. We (and the doctors) think that it is the IVIG treatments that are keeping her safe from my antibodies so far. I am so glad that I pushed for those treatments and that the doctors agreed to go outside of their comfort zone and try something they had never done before.
Our doctors here in Alabama will not try an intrauterine blood transfusion before 20 weeks, they just don’t have the experience they need. They also told me today that they don’t really feel confident doing a transfusion until about 24 weeks. We know that Nora will eventually need a blood transfusion, but we don’t know when. It could be next week or it could be at 30 weeks, although it is more likely to be early since we lost Lucy at 19 weeks and each pregnancy is supposed to be more dangerous than the previous one. We feel like I need to get to Houston, Texas as soon as possible to be treated by Dr. Ken Moise. He kind of pioneered the plasmapheresis and IVIG treatment for this type of high risk pregnancy and he has a lot of experience doing very early blood transfusions, some even before 16 weeks. He’s the expert and I know he will take good care of Nora and me. We also found out that he is in our insurance network so everything will probably be covered. I emailed him today and he said he can treat me but I shouldn’t come all the way there until we know that everything is set up for my IVIG treatments. If I miss even one treatment it could be deadly for Nora since that is most likely what is keeping her safe right now. So, in about a week or two my mom, Asher and I will be driving to Texas and will be there for at least 7 weeks, assuming Nora makes it that far. This is going to be very hard for my family. I seriously miss Josh so much after even one day of him being at work late. I miss Liam while he’s at school and I can’t wait for him to get home. I can’t imagine not seeing them for weeks. We have no idea how we are going to handle this financially. It will be hard for Josh to work and take care of Liam and be away from me and Asher during such a stressful time. My mom can’t miss that much work so she will need to come back at some point…it’s all very overwhelming to try to work out. We are exhausted at this point. It has been one tragedy after the next over the past two years so we kind of felt like we were starting this high risk pregnancy journey already depleted. We had so much hope that baby Nora would have my blood type and we could relax and recuperate for the rest of the pregnancy.
Ok, enough of my wallowing. There are so many things we are thankful for today, that Nora is healthy and not anemic and that she doesn’t have any genetic disorders. We are thankful for Dr. Moise who is willing to take us on as his patients and who always stops what he is doing to email me back. I am thankful that God’s power is made perfect in weakness (because we are so weak right now) and that we can rely on HIS strength and peace to carry us the rest of the way through. Thank you all for praying for us. I feel like He did another miracle today by keeping her safe even while being kell positive. He is doing amazing things and I praise Him for his goodness to us. Please continue to pray for our Nora girl, that she would be safe and healthy and would LIVE. Please pray that God would take care of the rest of our family during this stressful time. Thank you for all of your continued support and encouragement!
16 months ago we went in for Lucy’s second intrauterine blood transfusion, but instead, we helplessly watched her heart stop beating and a couple hours later we were inducing labor.
I have lived 16 months without my baby. It’s like going 16 months without food, or water or air or sunshine, but worse. Seriously, think about how it would feel for someone to say, “Ok, no more food. EVER.” The hunger would slowly build and the ache would set in and you would wonder, “How can I go another hour, another minute, without food? How can I go my whole life without food?” Everyone else has moved on, but I am still a Mommy living without my child. Sure, I am healing and finding some joy again, but that intense ache for my child is still there, always.
In January, Josh and I took a three day trip to Pensacola, FL to do our adoption training classes. We left our boys with my mom. It’s the longest I’ve ever been away from them. I miss them when I’m not with them. I truly love being around them. Even if I’m away from my boys for more than two hours, I start to feel that ache of missing them. I love them so much (and I’m not a helicopter parent, I promise!) Josh and I enjoyed our time alone, but I noticed that the more I started missing Liam and Asher, the more uncomfortable and anxious I felt. I realized it was the same feeling I had missing Lucy, the only difference was that I knew I would be able to satiate the ache in a day or two. I started to have this frantic thought, “What if Liam or Asher dies before I can get back to them?” I really wondered if I would ever see them again. It was kind of ridiculous, but it happened with Lucy, so of course it could happen with Liam or Asher. Aching for Lucy, Liam and Asher all at once was almost too much for me.
I had been so excited about going to the beach and relaxing with Josh. The only free time we had was the last day after our classes were finished. We were going to go to the beach and then drive home to Tuscaloosa afterwards. Josh and I both missed the boys so much that we didn’t even want to go to the beach anymore. It sounded way more fun to drive straight home and snuggle our little guys. We skipped the beach. I quenched my ache for them and it felt amazing, because I COULD. But the longing for my girl remains and burns everyday.
16 months without Lucy.
16 months of milestones missed, of aching and tears.
16 months of being misunderstood and avoided, of being judged and hushed.
16 months of being comforted by some.
16 months of two instead of three.
16 months without pink in the house. No dresses or bows or baby dolls or long, pretty curls growing.
16 months without seeing Josh hold his baby girl, without seeing Asher be the big brother that he is.
This is a long, difficult journey.
The next time we had a meeting with our adoption agency, we took our boys with us (we also didn’t have a babysitter so we kind of had no choice.) It was so much fun with our little loves, with two less to miss, and even though it was cold, THIS time we went to the beach.
We also went to Pump It Up, where we went down this slide so many times that I almost ripped my pants open and the boys still talk about it almost every day.
Asher’s first time down alone. I love the look of terror on his face 🙂
Losing a baby turns your world upside down. Everything feels wrong. There’s nothing right about a baby dying before her parents. One of the hardest things to understand is why people like drug abusers and child molesters get to have healthy babies but my babies die. Sometimes, I feel like I’m being punished for my obedience to God and they are being rewarded for their sin. I know that is not true, but it sure is what it looks like from my perspective.
I have heard so many other baby-loss moms say the same thing. It’s even hard to see other parents doing things we don’t agree with because we think, “I wouldn’t do that with my baby. I would do it a better way. Why do they get a baby and I don’t?” It is infuriating to see a pregnant woman smoking or a mom slapping her kid around in a store or to see horrible things on the news about parents abusing their children; their healthy children that they got to keep. I’ve seen people lose their faith over this. “How can God take my baby, who would have been treasured and loved and well taken care of but then He gives babies to people who hurt them, abuse them, kill them; people who can’t take care of them.” Some women who struggle with infertility have tried everything they can think of to get pregnant. Some have tried for years and they sacrifice a lot to be as healthy as possible, but still have empty arms. When they see somebody accidentally get pregnant and complain about it, it feels like a slap in the face. I’ve heard them say, “Maybe I should just give up trying to be healthy, start smoking and get really drunk, because that’s how so many other women get pregnant.”
I have been working through these questions since Lucy died and even more since I lost Jude. I know that I don’t deserve a baby more than any other person because I am sinful, just like them. My sins may be different, but I am still a sinner. What bothers me is that the BABY does deserve a better situation and a better Mama. Every baby deserves to be loved and well taken care of. I have a home full of love and laughter and any baby in my house will grow up knowing God’s love. We have a baby-shaped hole in our family that aches with the emptiness. That is why it’s so hard to see crack heads getting babies. It just doesn’t make sense.
I think all these questions have a lot of very deep, theological answers that I’m not going to even try to conquer. I can only write about my thoughts and experiences and this is what I think:
I am not God and luckily, I don’t have to figure it all out. One day I will know it all, but not today. All the abused babies, the neglected babies and the parents who don’t care- they are not my burden to carry. That is God’s burden, this is His world, and I can release it all to Him. They are all His responsibility, just like the baby-shaped hole in my life is His responsibility too. He will take care of it all and He will take care of my family and me.
Another comforting thought is that my babies are safe in heaven, living in perfection. I wish they were in my arms, but they are waiting for me, cozy and loved and happy. I don’t have to worry about them. They are not being abused or neglected.
When I feel jealous of someone who got a baby out of a bad circumstance, I ask myself, “Do you really want her life?” And the answer is always, “No.” I don’t want her life and I don’t want her baby.
I don’t know what that woman has gone through. Every person has a different story, different hurts and different experiences. What I see is a very small piece of the whole picture. I can’t judge her by what I see because it’s not the whole truth. I also can’t see the future. Maybe God will use that baby’s pain to help others or to accomplish beautiful things. I don’t see what He does, so I shouldn’t mourn the small part of the picture that I am seeing.
Anger is part of the grieving process. All of the emotions that come with grief are so overpowering that you just have to feel them to get through them. A lot of my grief anger has been directed toward the irresponsible parents or at God for allowing such “injustice.” Some of the anger has been misplaced. It has helped me just to recognize that a lot of the anger is coming from the grief of not having my baby in my arms–not necessarily from the fact that crack heads get babies. Eventually it WILL fade.
When I feel swamped with jealousy and anger and confusion it always helps to pray for that other lady and her baby. It goes against how I’m feeling, but when I force myself to pray for them I feel so much better. I also pray for God to let me see them the way He sees them. I pray for God to fill me with His love for them because I’m all out. Usually, I am surprised with the compassion and pity I feel for the woman after I pray this prayer.
Ever since Lucy died I have felt like there is a war going on in my head. Satan is spewing his lies at me constantly, especially when I’m feeling depressed and my arms feel leaden with emptiness. That’s when he strikes. He points to what I see and says, “Look! God trusted her with a baby, but He wouldn’t trust you with one. She deserves a baby more than you. God isn’t good. He wants to hurt you and He wants to reward her for her sin.” But what does God say? He reminds me that He is good and He loves me and He is a just God. He reminds me not to focus on the tiny piece of the puzzle that I can see. He’s using this painful, dark piece of my life to make a beautiful, perfect picture that will one day stun the eyes and swell the heart. When He’s done with the whole picture, I will step back and say, “OH! So that’s what you were doing. Thank you, thank you, thank you. I love it!”
Look at the cross. Think of all the people who went home that night who saw Jesus Christ dying on the cross, which is the greatest act of wisdom and salvation and grace and love in the history of the world and who went home and lost their faith. Do you realize how many people looked at Jesus dying on the cross and because they couldn’t understand it they said, “I don’t even believe in God anymore. I don’t see what good God could be bringing out of this.” So they looked right in the face of the greatest thing God ever did and said, “I don’t understand it, therefore my faith is undermined.”
-Timothy Keller
I am choosing to trust God to make something beautiful with my loss and my pain. I have to relax in the fact that I am not God, I don’t know everything and I am not in control.
I think Satan wants us to be jealous of other moms with their babies. I think he wants us to be eaten up with bitterness and anger and hate. Let’s choose love. Let’s fight for love and pray for those other parents and their babies. What would our babies want? Let’s make them proud by living lives full of love.
I Corinthians 13:4-7, 12
Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things…For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.
Welcome to my blog. It is terrifying to write a blog, especially one about the most personal thing in your life. I now have so much admiration for anyone who has put themselves out there and started a blog. I originally started writing this to chronicle our journey through grief and IVF and surrogacy. It was also going to follow our fund raising efforts to pay for the IVF. After I started writing some posts we found out from our doctor that we might have a chance at trying again naturally for a baby. My friends urged me to still do the blog, even without the fundraising, IVF and surrogacy. I also realized how therapeutic it was to write out our journey and to see all of the amazing things God has done for us. I’m expecting Him to do something wonderful and I would love it if you came along for the ride. By the way, I do apologize that this isn’t a happy, witty blog about motherhood and children. I wish it was. Right now we are still in the “Losing Lucy” stage, but one day we hope to be in the “finding hope” stage. Most of my posts right now will be about losing my only girl and living with the grief. Also, there’s a lot of Jesus stuff in my posts. He’s such a big part of the story that I couldn’t write it without Him. Another great thing about the blog is that I can type out the medical stuff as it comes up. It’s hard to explain some of the medical things that have complicated our lives recently. It’s easier to type it out once and hopefully I can explain things better that way.
I’ve noticed that people don’t like to talk about miscarriages or stillbirth (I mean who would WANT to talk about something like that.) Some women feel like they’re supposed to keep these losses to themselves. It makes people feel uncomfortable and awkward. Before losing Lucy I used to think miscarriages were sad and that the women who suffered them probably felt better after a few weeks. I thought miscarrying or having a stillbirth was nowhere near as painful as losing a child. Now I know that it IS losing a child. It is a soul shattering, heart crushing tragedy that leaves permanent wounds. No matter how far along the woman is in her pregnancy it is still her baby she lost. I think her grief should be respected and her baby should be mourned as a lost child. I want to talk about my stillbirth and my miscarriages. The people who have comforted me the most through this ordeal have been mothers who had miscarriages/stillbirths and shared their stories with me. I hope that this story somehow can bring hope to someone who has been through a similar tragedy.
UPDATE– As the months and years go by since I first started this blog, I see how God has used it in so many incredible ways (too many to list here!) I never thought that so much beauty and hope could come out of my terrible losses. I have been able to comfort hurting people with my story and share medical information with women dealing with antibodies during pregnancy. Lives have actually been saved because of this humble little blog, and it is not any of my doing. It is all God, and I am honored to be used by Him in this way. My own family has been held up during our darkest days by the words, thoughts and prayers of my amazing blog readers. Thank you to everyone who has visited my blog and actually read some of it (this still amazes me!) and to those who have been with me since the very beginning. You bless me more than you know.
His hematologist checked his blood for my antibodies and it came back completely negative! I was surprised by how emotional I felt when he told me Callum’s antibody screen was negative. My baby was finally free from my dangerous antibodies for the first time in his life. He can now make his own blood and it won’t ever be destroyed by my antibodies again. It has been a long hard road to get my boy to safety. We did it! They removed his IV and sent us home without a transfusion.
Since it took a while for the blood to be available I went back to the RMH to sleep and when I came back in the morning he had an IV in his hand because the foot IV didn’t work. He had just finished having his blood transfusion when I got there and his skin looked so pink and healthy.
Today our beautiful Nora is three years old. Usually as my kids grow from baby to big kid I grieve the swift passing of childhood, but after our experience of losing Lucy and fighting for Nora and Callum I feel differently as my kids grow. I savor it all like never before and the baby days gone by are celebrated because they WERE. Nora isn’t just a longing or a dream. She is our beautiful reality and we are loving every minute, every day, every year and every milestone we get with her.
