Sometime in the next month or so our lovely baby “S” will be born. Our bags are pretty much packed, her hospital bag is ready, all of her clothes and blankets are washed and ready, we have everything we need for our new baby girl. I have done this before with Liam and Asher, waiting impatiently as the anticipation and excitement grow day after day. The months turn to weeks and soon they will turn to only days left before she arrives. This wait, though, is very different from my previous ones. It is a strange and new feeling for me. I am not waddling around with my big round belly weighing me down. I feel no sweet baby kicks or contractions like I did with the boys. Strangers in the store aren’t asking me when I am due or what we are having. I don’t feel the intense nesting urge to clean every inch of my house before she gets here. I can breathe just fine with no little feet or elbows pressing into my lungs. At night I sleep undisturbed and comfortable in my bed. I am expecting a baby but I am not pregnant. How bizarre is that? I pump and store milk but there is no baby to drink it yet. The boys talk about S constantly, imagining what she will be like, look like, sound like. They already have a list of cute nicknames picked out for her. They get SO excited when they see the leaves on the trees starting to change color because we told them when the leaves turn red our baby S will arrive. They have never laid their cute little hands on my belly to feel S kick. Sometimes it feels like I am a little kid again playing dolls and pretending that I have a baby but she doesn’t really exist. Technically S isn’t even our daughter yet. She belongs to K and P and I want to respect that fact. S is not ours until they make the final decision after she is born. They have the freedom to change their minds at any moment and decide that they will, after all, parent this baby. It is hard to prepare for the baby emotionally while respecting the fact that she is someone else’s right now. It is hard to actually trust God with our baby S since we trusted Him with Lucy, Jude and Pax. I still haven’t completely allowed myself to let go and really believe that we are getting a baby in a month.
The other day the baby’s adorable carseat cover arrived in the mail. I brought the carseat down from the attic and got it all ready for her. It was kind of shocking to see the carseat there waiting for her. It looked like there was a baby already in there, covered up and napping.
Seeing carseats like this have been a huge trigger for me since losing Lucy. I avoid them as much as possible when I am in public. I almost had a panic attack when a woman at church brought her newborn baby, Lucy’s age, into Sunday school in his carseat last year. Now, I am going to (hopefully) be carrying around my own living, breathing baby in a carseat. I tried to fathom the thought that she might be sitting in that carseat in a few short weeks. I am almost too afraid to hope. I’m sure K and P are feeling the strain but for all the opposite reasons. K IS feeling those sweet baby kicks and struggling to sleep well at night. She is throwing up and feeling giant and pregnant and I can’t imagine how hard that is. She is also probably trying to prepare emotionally for this upcoming month and all that it holds.
As strange as all of this is, I don’t think I would change any of it. I believe that God has grand plans for baby S and all of this is just the beginning of her amazing story. I believe that she was created for our family and if things were different we might be missing out on our precious daughter to be. Our family would be missing out on knowing K and P and their beautiful children. If things were different I wouldn’t be learning how to trust God again and I wouldn’t be relearning how to give Him my children in faith. We would be missing out on so much.
Will you all pray for K and P and our family as well? This is going to be a very emotionally exhausting (but wonderful) month and we will need your prayers, especially K. Please pray for a safe delivery and peace and healing for K and P. Thank you so much!
In my opinion, the greatest story ever told is the gospel. I love to look at the Bible as a whole; as one story. God created the world and it was perfect. No babies died, infertility did not exist, and there was no pain or sin. It was beautiful…exactly how the Creator had imagined it. He gave us the gift of free will so that we could CHOOSE whether we wanted to love Him or not, because forced love is not real love after all. Unfortunately, with free will came the danger of sin, and we chose sin over Him the first chance we got. When sin entered the story, it ruined God’s perfect world. It brought pain, shame, death, and tragedy. The rest of the story follows God’s sweet plan to pursue us and save us and bring us back to perfection. His plan centered around His one son, Jesus, who He sacrificed to save the world. The Bible follows Jesus’ genealogy from the beginning, generation after generation, all the way up to Joseph. I love that the genealogy leads right up to Joseph who was not Jesus’ biological dad, but his adoptive father. Why have I never thought of this before? Jesus was adopted and raised by Joseph. God had only one son, one offspring on earth, one example of His family on earth. God could have created any family situation for the perfect God-man, and the one that He chose was adoption. He could have planned it any way He wanted and He chose to include adoption in His son’s life story. How cool is that?
And not only did God use adoption to tell the greatest story in the world, He used infertility as well. Many years before Jesus was born, his forefathers struggled to conceive and tasted the despair of infertility. Jennifer Saake writes in her book Hannah’s Hope:
Infertility took center stage in God’s account of history as the establishment and continuation of the Israelites seemed to be in question. Abraham was one hundred years old and Sarah ninety when their child of promise was finally born (Gen 17:17). Isaac, in turn, prayed for his barren wife, Rebekah, before God placed twins within her womb (Gen 25:21). One of those boys, Jacob, also went on to taste fertility challenges. While he had twelve sons, only two came from his beloved wife, Rachel, who struggled through years of infertility, both “primary” (never giving live birth) and “secondary” (unable to conceive or carry to live birth after at least one prior successful pregnancy.)
God used the struggles of infertility and the beauty of adoption in His most important story, His son’s story of redemption. If you are struggling with infertility, working through an adoption, or placing your baby for adoption, He SEES you. He sees your pain and your fear and your doubt. He is using it to create an amazing story of redemption in your own life. He is orchestrating it right now, working for you, gradually restoring your hope. Don’t give up! Be courageous and let Him work out your story like He worked out His son’s. After all, the best story in the history of the world started out a lot like yours and it ended with triumphant life.
I have had vivid dreams since I was a little girl, and often my dreams come true. This may sound crazy and ridiculous to some people, but it’s true. As I grew up I realized that God was using these special dreams to tell me things or prepare me for something in the future. Sometimes I think He uses them to tell me that He knew back then and He knows now and all of this is part of His plan. Often, I don’t know why He gives me certain dreams and A LOT of them are meaningless and random. Many of my dreams don’t come true, but some do in amazing ways. I think it is so special that He occasionally uses my dreams to communicate His love to me.
Sorry if this is a repeat. I think I’ve mentioned this one in my blog before. About two years before I met Josh I had a vivid flash of a dream about my son. He was about two years old with white blonde hair. He had his shirt off and was standing on a curb. I felt like God told me that I would have a son. He looked just like Liam and Asher when they were little.
ASHER
ASHER
LIAM
LIAM
I had a few more dreams about my future baby boys, and many of them came true. I always thought it was strange that God only gave me one dream about my future daughter, and it was a baffling one. Years before I met Josh or even dreamed about my sons, I had one dream about my baby girl. I was lying on the hospital bed, giving birth. When she came out her skin was a strange reddish brown color. I was thrilled to have a daughter, but there was a sense of something being very wrong in the dream. Then I woke up. I had a passing thought that maybe I was going to marry someone of a different ethnicity and my daughter would have darker skin. Now I know that the dream was about Lucy; my daughter that came out with reddish colored skin because she should have still been developing in my womb instead of being born when she wasn’t ready. How strange that He knew all those years ago about the tragedy that I was approaching, closer and closer every day. I wonder if His heart ached back then for the pain that I would go through. I’m thankful that I have such a strong God, who is able to shoulder the grief of the world. I whine about not understanding His ways, but do I really want to know all the things that He has to know? I couldn’t bear it.
There are some dreams that are yet to be fulfilled, but I am expecting them to be one day. These dreams bring me so much joy and hope. While I was pregnant with Lucy I prayed all the time that God would tell me if she was going to live or not. One night I had a quick flash of a dream. Josh was facing me and was holding a baby out in front of him. The baby was facing Josh, so I couldn’t see the baby’s face. I couldn’t tell if it was a boy or a girl. Josh’s eyes were alight with joy and he was smiling into the baby’s face. He was absolutely in love with that baby and his face was full of pride. The baby had such a cute bald head that was covered with the finest layer of blonde peach fuzz. The dream made me so happy. I hoped it was Lucy, but never felt confirmation whether it was or not. Now I know that it wasn’t Lucy, it was some other baby. But that dream is so amazing to me now. God used it at the time to comfort me because He knew I needed to see that we would have a healthy baby. He knew that when we lost Lucy the doctors would tell us to never try again, that we should just be thankful that we got two. God knew how much it would mean for me to have that promise, that we WOULD have another baby one day, even if it wasn’t Lucy. And He had the wisdom not to show me back then that the baby Josh was holding in the dream wasn’t Lucy. I couldn’t have handled that knowledge while I was pregnant with her and fighting for her. He knew exactly what I needed two months before losing my daughter.
After I lost Lucy I had a very vivid dream of my future son. He was tiny and was swaddled in a blanket. He was looking up at me and his forehead was all crinkly with concern. He had a tube down his nose and taped to his face, but other than that, he seemed healthy. He was so cute and his name was Ransom (not saying that will be my son’s name, but it was in the dream.) He had a small face, like Liam does, but his features were more like Asher’s, big downturned eyes. I can see his face right now, clear as day, and I believe one day I will hold him in my arms. I can’t wait.
I have had a couple of dreams about our next baby. I started having them before we decided to adopt. Several times I dreamed of breastfeeding my new baby and it was always a peaceful, comforting dream. About a year ago I dreamed that I was in a hospital meeting my new baby. Instead of being in the hospital bed, I was in a comfortable arm chair and a woman gently placed my baby in my arms. It was a girl and I was SO excited. I shouted out, “It’s a GIRL! And she is BREATHING!” Then I was in the hallway talking to every single person that walked by, calling out, “Come look at my new baby. It’s a girl and her heart is beating and she’s breathing and she is ALIVE!” My heart could have burst it was so full of pride and joy.
There are several other dreams that I am waiting to see come true. I am truly thankful for a God who cares so much about me and my future. All of the worrying I do about my future is in vain. He already holds all of my days in His hand. He has it all planned out and the best part is that He will be with me every step of the way.
Almost six years ago, Josh and I arrived in America with hardly any possessions and a baby boy about to be born. We had just finished our two year teaching contract in South Korea and we had no jobs lined up, no health insurance and no home. We prayed for God to provide for us. We asked Him to give us a house, health insurance, good jobs, a good church, the list went on and on. God slowly answered all of those prayers over the last few years, but He has still been working on the house one. Since we came back from Korea we have lived with my parents (briefly), in two different tiny apartments, in a giant old home that belonged to some friends (briefly) and in our cozy townhouse we are in now. I used to pray fervently for God to give us a good house that we could afford with a fenced in backyard. I begged Him day after day to make my dream a reality. It never happened. Lucy died and I stopped asking God for that house because I had much bigger problems. I gave up on the house prayers and thought it just wasn’t going to happen. The beautiful thing is that God did not give up, even when I did. All this time He has been working on my behalf and planning on answering that prayer with the perfect house at the perfect time.
Our oldest son, Liam, just started kindergarten this fall. He has the most unique brain (he is gifted and has sensory processing issues) which means he needs to be schooled differently than most. We realized soon after he started school that he probably needed to be in a different school zone, which meant we needed to think about moving AGAIN. About a month ago our landlord told us he was probably going to sell the town home that we are renting and that we might need to look for a different place to live. A couple of weeks later my parents told us about a house that was for sale in their neighborhood that looked perfect for us. They said it had been on the market for a while and the price had been reduced. It was in the perfect school zone, the one where we could pick from the two top schools in the city for Liam to go to (Verner and the Magnet School, for those of you in Tuscaloosa.) We doubted that we could get a loan for this house since I still have a lot of school loan debt and we don’t have a large income. After looking at the house (and loving it), we decided to just see if we could maybe get approved for a loan. We found out the next day that we WERE pre-approved for a loan for the exact amount that the house was being sold for. We got a special loan that was only available for us because of the huge tornado that ripped through Tuscaloosa in April of 2011. We were so excited to get the loan approval. We put in an offer the same week and our offer was accepted! We are still in shock at how quickly we bought a house, the perfect house for our family. Two weeks ago we weren’t even looking for a house! And it is SO cute, we love it so much. It has a huge backyard for the kids, a screened in porch, a wood burning fireplace and beautiful hardwood floors. It’s in the same neighborhood that my parents and my sister and her kids live in. The prayer that I prayed day after day in 2009, 2010, 2011 and 2012 was answered last week in the most fantastic way. We will be moving into our new home the week after our new baby arrives!
We don’t have many pictures of the new house yet so this will have to suffice. Besides the fireplace, this is my favorite space in the house. I plan on transforming it into a playroom for my three favorite little people on earth. By the way, the cute girl in the picture is my niece Lily.
After we met K and P things didn’t go perfectly smoothly like I thought they would. There were some problems with the adoption agency and K. It was stressful for all of us and I was frustrated with God. I was annoyed because I had had so much heartbreak trying for a biological baby that I thought trying for our adopted baby would be easier and safer. I remember saying to Josh, “After all the suffering He has allowed, you would think that He would at least give us a break with this adoption.” Eventually the unrest led to us leaving the agency and going with a local adoption attorney. Looking back, I am SO thankful that God orchestrated that. If we had stayed with the agency we never could have afforded this wonderful new house and we would be going into debt to finance the adoption. I think God allowed the strife between K and the agency because He wanted us to go with the lawyer. He wanted us to have this house and He wanted K to be better taken care of by us directly, rather than through the agency. That whole time I thought He was turning His back on our adoption, He was masterfully creating something better. He was working on my behalf, even when I couldn’t see it at all. Even when I complained and blamed Him and doubted, He patiently worked for me, answering my prayers in the sweetest way ever and blessing my life with good gifts. He is such an awesome, loving and patient Father. Ask Him to be in charge of your life and then let Him work. He will do far more than you ever could have imagined. And for goodness sake, be PATIENT (unlike me.) Your blessings ARE coming. He IS working for you behind the scenes.
Psalm 147:5 Great is our Lord, and abundant in power; His understanding is beyond measure.
Lamentations 3:25 The Lord is good to those who wait for Him; to the soul who seeks Him.
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!
* If you are dealing with anti-Kell antibodies and are searching for information, don’t be scared or discouraged by my story. Your baby will probably be fine as long as you educate yourself and make sure you and your baby get the correct treatment. Make sure to check the bottom of the page for the steps you need to take to ensure you are getting the best treatment possible. For more resources check out The Allo Hope Foundation.
Before developing anti-Kell antibodies, I had two normal pregnancies and delivered two healthy baby boys, both born at 41 weeks. When I was pregnant with my third baby, I discovered at nine weeks that I had anti-Kell antibodies. I had never heard of anti-Kell antibodies and couldn’t find much information online. It was terrifying. Long story short, I have had four Kell sensitized pregnancies with VERY different outcomes. Lucy was stillborn halfway through the pregnancy. My next baby, Nora, was born healthy at 37 weeks 6 days and has no lasting effects from the antibodies that tried to kill her in the womb. After Nora we had Callum, who was born at 34 weeks 4 days and is now a healthy, super smart preschooler. Our last baby, August, was born at 37 weeks 1 day and is a healthy one year old now. Over the past nine years I have done a lot of research and asked a lot of questions, and I now have a much better understanding of this disorder than when I was first diagnosed. I will do my best to explain anti-Kell antibodies and how they work. The more you understand, the better you can advocate for your baby and keep your baby safe.
Disclaimer: I am not a doctor or a medical professional. This is what I understand about anti-Kell antibodies.
Kell is an antigen found in some people’s blood, so basically it’s kind of like a blood type. It’s not dangerous at all. My husband, Josh, and my children, Asher, Lucy, Nora, Callum, August and possibly Liam all are positive for the Kell antigen. About 9% of Caucasians are Kell antigen positive. I don’t have the Kell antigen, and that’s where the trouble begins. My pregnancies with Liam and Asher were totally normal and healthy because I did not have anti-Kell antibodies yet. When I gave birth to Asher (who has Kell antigen positive blood) some of his blood leaked out and mixed with my blood. This is normal during childbirth, especially a vaginal delivery of a 10 lb baby! Because my blood is Kell negative, my body saw Asher’s blood as something foreign and dangerous. My body thought Asher’s blood was a virus, even though it wasn’t. When our bodies get a virus we make antibodies. Antibodies are like the soldiers who go and kill the virus. When we get vaccinated we are injected with a little bit of the disease, then our bodies produce antibodies to kill it. After the vaccination, our bodies are well armed with antibodies to kill the disease and that’s what keeps us safe. So, because my body thought Asher’s Kell positive blood was a virus, I produced anti-Kell antibodies to destroy it. The antibodies I produced were specifically designed to find and destroy red blood cells containing the Kell antigen. This is called being sensitized. It didn’t hurt Asher because it happened right as he was being born. He got out just in time. There is another way that women can become sensitized. If a Kell negative woman is given a blood transfusion with Kell positive blood, her body could react the same way mine did when I gave birth to Asher- by creating antibodies as a response to being exposed to Kell positive blood. There are also recent studies that show that intravenous drug abuse can possibly cause sensitization as well.
My husband found out through a simple blood test (done by my regular OB) that he is heterozygous for Kell, which means he has the recessive gene. This just means that each one of our kids had a 50% chance of being Kell positive like Josh or Kell negative like me. The only way the antibodies can hurt the baby is if the baby is Kell antigen positive. If the baby is Kell negative, the antibodies cannot affect him/her and it will be a “normal” pregnancy. With each pregnancy we were hopeful that our baby would have my blood type, but we always got the wrong 50% because our last five kids have all been Kell antigen positive. If Josh had been homozygous for Kell, our kids would have all had a 100% chance of being Kell positive. Most people who are positive for the Kell antigen are heterozygous like my husband.
My body will always produce anti-Kell antibodies, I can never get rid of them. I have basically been vaccinated against my husband’s blood type, so anything inside my body with his blood type will be attacked by my antibodies. Unfortunately, like I mentioned earlier, Lucy got her Daddy’s blood type. She was Kell positive. She was a healthy, kicking girl throughout the first trimester and the beginning of the second. Babies don’t produce their own red blood cells until the end of the first trimester/beginning of the second. When Lucy started making her own blood, my anti-Kell antibodies crossed the placenta and recognized her blood as something dangerous. The antibodies started attacking and destroying her red blood cells. This can make the babies become anemic and eventually can cause fetal hydrops or even death if the fetal anemia is untreated. Thankfully, with the correct monitoring, fetal anemia can be caught in time to treat before it becomes severe.
The way the anti-Kell antibodies are measured is something called a titer (pronounced “tight-er”.) The titer shows the amount of antibodies in the mother’s blood. When a mother’s titer reaches 4 it becomes critical for the baby. This just means that the antibodies can affect the baby at that level. My titer was 1,024 from the very beginning of my pregnancy with Lucy. Titers can be expressed as a ratio like this 1:16 or just the number itself, 16. A titer of 1:16 and a titer of 16 mean the same thing. The critical titer for Kell is 4 and the critical titer for all of the other antibodies is 16. I have heard different “facts” about antibody titers from different people. Some believe that the titer rises as the antibodies attack the baby, so a rising titer indicates a Kell positive baby, and a low titer indicates a Kell negative baby. Some believe that every subsequent pregnancy will be more dangerous because the titer will be higher. The one thing about titers that everyone agrees on is that they are unpredictable and are not to be trusted. My titer never changed throughout my pregnancy with Lucy, during the two years when I wasn’t pregnant and during my pregnancy with Nora, who was Kell positive also. It has always been 1,024. It did go down to 512 with my last baby, Callum, and was 256 at the end of the pregnancy. Before I got pregnant with August we tested my titer and it was 2,048, the highest it had ever been. In general, the higher the titer, the more dangerous it is to the baby, for example, we can assume that a woman with a 1,024 titer will have a much higher chance of having an affected baby than a woman with a titer of 2. However, the extent to which the baby is affected relies on several different factors besides the titer- how aggressive the antibodies are, how the baby handles the antibodies, whether there are other antibodies present, the baby’s gender (girls tend to do better than boys, supposedly) and especially, the monitoring and treatment given during the pregnancy. Just because your titer is very high, it doesn’t mean you are going to lose your baby, and it doesn’t mean your baby is Kell positive. Just because your titer is low, it doesn’t mean your baby is safe and it doesn’t mean your baby is Kell negative. The best thing you can do for your baby is find a good MFM (maternal fetal medicine specialist) who is knowledgeable about these antibodies (or who is willing to learn), educate yourself on the disease and make sure you are getting the right treatment and monitoring during the pregnancy. I had the same titer with my daughter Lucy and with my daughter Nora. With Lucy I did not receive the right monitoring and treatment, so she was stillborn. With Nora I did receive the right monitoring and treatment from very experienced MFMs and she is now a healthy little girl. My sons, Callum and August, also received the correct monitoring and treatment and they are perfectly healthy now.
So what does the monitoring and treatment look like? Babies should be monitored very closely and can be given an intrauterine blood transfusion if they become anemic. Regular ultrasounds or even in depth level 2 ultrasounds cannot detect fetal anemia, unless the anemia is so severe that it has started compromising baby’s organs or fetal hydrops has started. The goal is to discover and treat the anemia before it ever gets to that point. Doctors can detect and measure fetal anemia by doing an MCA doppler scan. MCA stands for middle cerebral artery. It’s the central artery in the baby’s brain. A really powerful ultrasound is used to measure the blood flow through this artery. If the blood is moving too fast, they know the baby is anemic. They give the baby an MoM (multiples of median) score that shows how anemic the baby is. The median MoM is 1. If the baby’s MoM starts creeping up and gets to a 1.5 that means he/she is anemic. Once the MoM is 1.5 or over, the doctor should do an intrauterine blood transfusion (IUT) on the baby to resolve the anemia. Usually babies aren’t affected until late in the second trimester or early in third trimester, but in extreme cases they can be affected as early as 15 weeks. The baby can’t be harmed by the antibodies in the first trimester. The earliest loss I have seen from these antibodies was at 14/15 weeks, although some women say they have lost babies as early as 13 weeks. Lucy had her first MCA scan a day or two before 18 weeks and her MoM was 2.5. She was severely anemic. They did an IUT on her the next morning. My baby Nora had her first MCA scan at 15 weeks and weekly after that. She had 5 IUTs. My son Callum had his first MCA scan at 14 weeks and had 3 IUTs. Baby August had his first MCA scan at 14 weeks and needed 7 IUTs. If you have a critical titer, you should start MCA scans by 16-18 weeks and have them done weekly to check the baby for anemia. If you have a titer in the hundreds or thousands it is best to start MCA scans by 16 weeks.
When an IUT is performed, the doctor basically sticks a really long needle through the Mom’s belly into the uterus and into the baby’s umbilical vein. They put fresh, Kell negative blood packed with red blood cells into the baby. If the baby is too small and the doctor can’t get into the vein they just stick the needle into the baby’s abdomen and put the blood there (called an IPT.) The blood placed in the baby’s cord relieves the anemia immediately. The blood placed in the baby’s abdomen is absorbed over the following days/weeks and can act as a reserve, slowly filling baby up as she becomes anemic over time. Some doctors prefer to put blood into the baby’s cord and belly to resolve the anemia immediately and give baby a future reserve of blood in order to get more time between IUTs. Some doctors prefer to only put blood into the cord and will need to perform the next IUT sooner. If you want to know more about the IUT procedure you can read about my transfusions with Nora here. Dr. Moise always rescanned Nora the day after an IUT to make sure she handled the procedure ok. Dr. Trevett also scanned my babies 24 hours after every IUT. Usually, if there is a complication from the IUT it happens within the first 24 hours after the procedure. My little Lucy was left for seven days after her IUT before they would scan her to see how she handled the procedure. Make sure you only let experienced MFMs perform your IUT.
Some women have extremely aggressive antibodies, so the concern is that the baby will become anemic before she is big enough to have an IUT. Only very skilled and experienced MFMs can perform a successful IUT on a baby younger than 20 weeks. The smaller the baby, the more difficult and dangerous the procedure is. One way to protect the baby until she is big enough for an IUT is to give the woman plasmapheresis and IVIG treatments or IVIG alone. With Nora, Callum and August I started plasmapheresis and IVIG around 10 weeks and the treatments saved their lives. These treatments are usually only given to women who have had a previous loss or a severely affected baby in a previous pregnancy, or women with extremely high titers.
One last thing- a lot of people ask me why I couldn’t get “the shot” to prevent my body from making the antibodies in the first place. There are many different types of red cell antibodies, and the most common type is anti-D antibodies (Rh disease.) Because it’s so common they developed a preventative shot called RhoGAM that can be given to a pregnant woman before she develops antibodies and it keeps her baby safe (although it does fail at times and some women still end up developing anti-D antibodies.) There is no preventative shot for Kell. After Lucy died I asked my doctor why they haven’t developed a preventative shot for Kell like rhoGHAM. He said it doesn’t affect enough people and isn’t profitable for the pharmaceutical companies.
UPDATE- Dr. Moise is currently working on a new treatment for women with anti-Kell antibodies (and other antibodies.) There might ACTUALLY be a shot one day that can protect these babies from anti-Kell antibodies. You can learn more about this possible new treatment HERE.
* For women with anti-Kell antibodies: Please don’t be scared by my story. What happened to Lucy is VERY rare, almost unheard of. Your baby will probably be fine as long as you make sure you are getting the right treatment. I’ve heard that most babies in a Kell sensitized pregnancy have a great survival rate. If you just found out you have anti-Kell antibodies you need to do several things:
Find out what your titer is
Have the baby’s father tested for the Kell antigen (NOT anti-Kell antibodies)
If the baby’s father is Kell antigen negative, the baby cannot be harmed by the antibodies and is safe.
If he is positive for the Kell antigen, have him phenotyped to find out if he is homozygous or heterozygous for Kell to know if your baby has a 100% chance (homozygous) or a 50% chance (heterozygous) of being Kell positive.
Get a referral to an MFM
If you have a titer of 1:4 or higher, make sure you have your first MCA scan between 16-18 weeks and weekly after that. If your doctor wants to wait until after 18 weeks for the first MCA scan, you should insist on it and if they won’t budge, ask to be referred to a hospital that will. With Nora, I had my first MCA scan at 15 weeks.
Buy a notebook or journal and keep it with you at every appointment and every procedure. Write down all the information your doctor gives you. Think of all the questions you want to ask before each appointment and have them written down in the notebook. Write down all the answers. (I also had encouraging Bible verses written down that helped a lot.)
Remember that YOU are the only person who can speak for your baby. You are your baby’s voice. If you are unsure about something, don’t be afraid to ask the doctor. If you feel like something might not be right, go in immediately and have your baby checked out. Don’t be scared to look stupid or be annoying. That doesn’t matter when you compare it to the worth of your baby’s life. Read this post to avoid making this very common and dangerous mistake many women make.
If you have lost a baby to antibodies before, have had a severely affected baby before or have an anti-Kell or anti-D titer in the hundreds or thousands, read THIS
Feel free to email me or private message me on Facebook if you have any questions about anti-Kell antibodies: [email protected] or just ask your question in the comment section below.
Remember that ultimately your baby’s life is in God’s hands. Try to rest in the fact that He loves your baby more than you do.
Disclaimer: I am not a medical professional. This is what I have learned about this complication over the past few years through my experiences, through the wisdom others have shared with me and through my research.
I still remember hearing the words, “There’s a problem with your blood work.” It was my first ultrasound and first OB appointment with my third child. I was nine weeks along. I had had no complications with my first two pregnancies so I was not prepared to hear those words. We had just seen baby Lucy on the ultrasound for the first time and everything looked perfect so I thought we were in the clear. I couldn’t really understand how my first trimester blood test results (taken at six weeks) could possibly cause any problems for the baby. The expression on my OB’s face made my heart sink, though. He sat down and tried his best to explain anti-Kell antibodies to me but I didn’t understand everything he told me. He had been in the field for almost thirty years and I was his first patient with anti-Kell antibodies.
It is so scary to suddenly be told that your pregnancy is “high risk” and your baby might be in danger. Most parents who are faced with this reality go home in shock and have to make the big decision that is weighing on their minds, “Do I dare Google it? Or do I protect myself from unnecessary worry and avoid the computer and trust my doctors to handle it?” Most well meaning family members and friends encourage the terrified parents NOT to Google it. I had to look it up on my computer as soon as I got home because I honestly had no idea what my OB was talking about. I wanted to know what I needed to do to protect my child and I was desperate for some idea of what the rest of my pregnancy would look like. Unfortunately there was hardly any information available so I felt lost.
I have learned so much since that day four years ago. I have heard countless stories and watched many pregnancies play out and I have noticed a trend. There is one mistake many women make during an alloimmunized pregnancy. I made this mistake with Lucy, unfortunately, and it is the main reason she is not here with me today. Because of what happened with Lucy, I knew not to make this mistake again when I got pregnant with Nora and now she is a happy, healthy one year old.
So, what is the biggest mistake most people make once they discover that they are sensitized and have anti-Kell antibodies (or other red cell antibodies) during pregnancy?
BLINDLY TRUSTING YOUR DOCTOR
I want to be clear before going any further, that I admire and respect doctors so much. I have always been amazed at their courage and confidence in the midst of dangerous, stressful situations. Often one small mistake can mean the difference between life and death. I don’t think I could ever do what they do on a daily basis. But, there has to be a balance. We are trained in our culture to trust our doctors and almost view them as gods. We are taught not to question them. The truth is, they are human, just like us. Alloimmunization/HDFN during pregnancy is a very rare condition and most doctors and even maternal fetal medicine specialists do not see many cases on a regular basis. This does not mean that they are bad doctors, it just means that they don’t have much experience treating this condition. The treatments and protocols for alloimmunized pregnancies are constantly evolving and improving and many of them are fairly new. This means that many of the protocols in place around the world today are not up to date.
There is one hospital in my state (Alabama) that treats pregnant women with anti-Kell antibodies. OBGYN’s across the state refer their patients to this hospital if their patient’s first trimester antibody screen comes back positive. When I was pregnant with Lucy they told me that they don’t start MCA scans until 20-22 weeks at the earliest. At my first appointment I remember sitting in the exam room waiting for the MFM (maternal fetal medicine specialist) to come in and introduce himself. Before he came in I heard him take my chart off the door and flip through it. “Anti-Kell antibodies… What’s the critical titer for anti-Kell?” No one answered him, so he asked down the hallway, “Does anybody know the critical titer for anti-Kell?” I had done a little research online and I knew it was eight. “It’s eight,” I thought. After several doctors discussed it they decided it was eight and then he entered the room and introduced himself. I felt very uneasy. Why didn’t he know the most basic fact about this condition? Why did I know it and he didn’t? He was supposed to be the one who was going to educate me on the condition and he was supposed to be the one who was going to protect my baby. He was the “expert” though, and the one with the medical degree so I trusted him with my baby’s life. He told me that my baby would probably be safe since it was my first sensitized pregnancy. Even though my titer was very high (1,024) they said the baby would probably be fine. I asked if there was a way to protect the baby from the antibodies but they said there wasn’t and that she would be ok. I had researched and found some information about plasmapheresis and IVIG so I asked the MFM if we could try it. They said it wouldn’t work, it was just experimental and I couldn’t and didn’t need to try it. The insurance wouldn’t cover it anyway unless I had lost a baby already. I let it go and trusted the doctor. (I found out later that my insurance would have covered the treatments for Lucy.)
We had many people tell us how blessed we were to be going to the best hospital in the state. We were told they were the experts and were very qualified MFMs. Looking back, I see now that the protocols and treatment options at this hospital for alloimmunized pregnancies are out of date and desperately need to be updated and changed. Waiting until 20-22 weeks to start MCA scans with a critical titer (especially one in the thousands) is extremely dangerous and reckless. I had seen online that most women had their first MCA scan by 18 weeks, some as early as 15 or 16 weeks. When I brought that up to my MFM he said they didn’t do them that early because even if the baby was anemic, there was nothing they could do for the baby that early. They told me IUTs (intrauterine blood transfusions) can’t be done until 20-24 weeks at the earliest. Again, I had read several accounts online of women having successful IUTs as early as 16, 17 and 18 weeks. But that instinct to trust the doctor and not to question or doubt their expertise remained in me and I felt very uncomfortable. I didn’t know what to do.
Many women find themselves in a similar situation. I get questions all the time like, “I have a very qualified MFM but he says I don’t need weekly MCA scans, even though my titer is critical. I don’t know what to do.” Or “My MCA scan was 1.56 but the doctor said he wants to wait a week and recheck next Tuesday. Should I ask to be seen sooner? He insisted that it would be ok to wait a week.” Or “My MFM is doing monthly titer checks and will start MCA scans when my titer hits 32. You are saying the critical titer for anti-Kell is eight but my doctor disagrees.” I’ve even heard extremely confused doctors give advice such as, “Don’t worry, these antibodies can’t cross the placenta, so your baby is safe and doesn’t need to be monitored.” Or, on the opposite end of the confusion spectrum, “Since you have anti-Kell antibodies you can’t have any more babies because it’s too dangerous…the fact that you were sensitized by a blood transfusion and your husband is Kell antigen negative is irrelevant.” Almost every time I hear a story about a woman losing her baby to this disorder it is because the proper treatment or monitoring was not performed.
I am not saying that you shouldn’t ever trust your doctor or MFM but YOU have as much authority as the doctor does when it comes to treatment plans and monitoring for your baby. You have to work together with the doctor to make sure your baby gets the best treatment possible. It should be a partnership between you and your MFM, a partnership in which you feel comfortable asking questions if there is concern about the treatment plan and one in which decisions are made together by you and the MFM. Ideally all of healthcare should be a partnership and patient education and involvement should be encouraged. If the doctor does not invite you to be part of the decision making process, insert yourself into the discussion. You will have to work hard and fight for your baby. Do your research (you can find lots of great resources here www.allohopefoundation.org), join the Antibodies in Pregnancy Facebook group (you can find me on Facebook- Bethany Weathersby), make sure you understand alloimmunization/HDFN and how it affects your baby, write information down in a notebook, print off important facts and studies, and bring it all with you to your first appointment with your MFM. Never be ok with vague test results like, “You have a high titer” or “The MCA scan shows that the baby’s anemia is in the safe zone.” You cannot let the MFM make those calls since their information and protocols might be out of date. Ask for your exact titer and at every MCA scan ask for the PSV results or the MoM number and always write it down. Then YOU decide if your titer is critical or if the MoM is in the safe zone. If you are having an IUT, ask for the beginning and ending hematocrit at the start and the end of the procedure. Obviously there are tests that you cannot interpret because you are not a professional (like certain ultrasounds) but when it comes to numbers and blood levels there are exact numbers to look for or be wary of. If you aren’t sure, you can learn more about those numbers here . Be respectful and listen to the MFM but make sure that the treatments or lack of treatments he suggests match up with the information you have. Don’t be afraid to speak up if you have questions or if the MFM says something you disagree with. I know it is hard to make a suggestion to the expert or to doubt something he says, but you have to do what it takes to protect your baby. If your baby dies, they probably won’t remember your child’s name months, weeks, or even days later, but you will be broken for the rest of your life. You are one of many patients they see on a regular basis, but this is your one and only baby who can never be replaced. The mama bear instinct that was born in you the day you found out you would be a mother was placed in you for such a time as this. Harness that power and that primal need to protect your baby. Who cares if the MFM thinks you are pushy or annoying? Your baby is depending on you. Never be afraid to speak up.
After Lucy died and I got pregnant with Nora I went back to the same MFMs that treated Lucy since they are the only ones in the whole state. I had Dr. Moise’s study on plasmapheresis and IVIG printed off and I had come up with a treatment plan that I was confident about. I listened to their treatment plan first, which was, “Well, you have a 50/50 chance of having a Kell positive baby. Let’s hope the baby is negative. We want to see you back at 16 weeks for a check up.” If I had gone with their plan, Nora would be dead. I explained that I did not feel comfortable with their plan for my baby and I wanted to try Dr. Moise’s treatments instead. They were not excited about my suggestions. There were deep sighs and smirks at the corner of the mouth. I hated being the pushy one, the annoying one, the one they would all talk about later, but Lucy had lit a fire inside me that enabled me to fight with every fiber of my being for this new baby of mine. I don’t want you to have to lose a baby first before you learn that you HAVE TO FIGHT for your baby’s life. I want to light that fire in you now. Your baby deserves the best chance of life possible and your baby deserves a mama who is willing to look stupid or be annoying to save his or her life. Your child’s life is worth it. You can do this.
So, when my MFMs were less than thrilled about my treatment suggestions I told them if they were not ok with it, that was fine, I would leave the state and find a doctor who would do it. I gave them Dr. Moise’s contact information and the study I had printed off. They said they needed time to think about it. One MFM said he would be willing to do the IVIG portion of the treatment plan, but not the plasmapheresis for some reason. Thankfully I had my first appointment with them at six weeks since we knew my antibodies were so severe, so I had time to let them discuss it and make a decision. The MFM contacted Dr. Moise to discuss the treatment and agreed to start plasmapheresis and IVIG at 11 weeks to prevent Nora from becoming anemic. The MFMs and nurses did put a lot of work into setting these treatments up and getting my insurance to cover it. I am so thankful that the MFM contacted Dr. Moise and decided to try something new because it saved my child’s life.
There have been times when I disagreed with an MFM on something, but I had to be the one to back down. It is a delicate balance, knowing when to fight and when to trust. With Nora, I desperately wanted to double my IVIG because her first MCA scans (15 and 16 weeks) were around 1.3-1.4 (some between 1.4-1.5) so I thought she was getting anemic already. My MFM said that he wouldn’t do it. I fought and pushed and pestered him, but he really didn’t feel comfortable with it. I thought it was a death sentence for my baby but after he contacted Dr. Moise and his decision was backed by the expert, I had to relent. It was HARD to let go and trust them, but I did and they were right. The IVIG did not need to be doubled. After I moved to Houston at 18 weeks and Dr. Moise took over my care, I was terrified because he only wanted to do one MCA scan per week. In Alabama they had been doing two per week. I told him it made me uncomfortable to wait a whole week between scans but he insisted that the baby would be fine until the next scan. I wasn’t sure if I should fight for more scans or trust him. I had to purposefully think through my emotions; I was so anxious about my baby that I was trying to be in control to feel safer. I considered my MFM, Dr. Moise, and acknowledged that there were no red flags so I could trust him. When I told him how nervous I was with his decision to scan only once per week he didn’t brush my concerns off. He listened and then he showed me specific things on the ultrasound that assured him Nora wasn’t anemic or in distress (her heart was not dilated at all, there were no signs of fluid building up in any of her organs, her bowels looked normal, my amniotic fluid levels were normal, her heart rate was good and she was active, the MoM was under 1.5.) I felt better after he pointed out exactly why he was ok waiting a week to rescan. I submitted and agreed to scan once a week and he was right. My baby Nora was fine. So, fight for the basics, speak up and trust your instincts, ask lots of questions and remember that sometimes you have to be the one to back down, as long as the MFM is trustworthy, doesn’t have any red flags and is following the basic treatment protocols.
There are certain red flags you can look for when you first meet your MFM. If you see several red flags, look for a new MFM as soon as possible, even if it means you have to travel several hours to find the right one. We had to travel eleven hours away and relocate for five months to find the right MFM for us and it was completely worth it. You wouldn’t hire a babysitter that you didn’t know and weren’t sure about so be assertive about who you are trusting with your baby’s life.
Red Flags to Watch For:
The information given by the MFM does not match up with the basics* listed at the bottom of this blog post.
The MFM acts insulted and irritated when you ask questions or when you challenge something (s)he says.
The MFM is too busy to listen to all of your concerns and answer all of your questions.
The MFM is not willing to learn new information from sources you bring in or consult with other doctors at a different hospital.
The MFM is only willing to do the minimum amount (or less) of monitoring required.
Your MFM is not willing to let you be part of the decision making process and does not share specific test results with you.
Notice, none of the red flags refer to lack of experience with alloimmunized pregnancies. Even doctors who have rarely encountered this disorder can be wonderful MFMs as long as they are humble and willing to learn about it (except when it comes to the actual surgical procedures like IUTs and amnios. Only let very experienced MFMs perform those procedures on you.) Some of the most proactive MFMs I’ve read about are those who started off not knowing much about alloimmunized pregnancies or how to treat them. They did their research, contacted other doctors, asked questions, listened to their patients, referred their patients to more experienced MFMs when necessary and were willing to try new treatments to save the babies, and they did.
*Here is a reminder of the basics. If your MFM doesn’t agree with this information it might be best to get a second opinion.
You need to know as soon as possible what your antibody titer is and you need to know what the critical titer is for your particular antibody. (Critical titers: anti-Kell:4, all other antibodies:16)
Your baby can only be affected by your antibodies if (s)he is Kell antigen positive.
The baby’s father should be tested for the Kell antigen (NOT the antibodies!) as soon as possible.
If the baby’s father is negative for the Kell antigen, then the baby has a 0% chance of being Kell positive, which means the baby cannot be harmed by your antibodies.
If the baby’s father is Kell positive, he needs to be phenotyped to see if he is homozygous or heterzygous for the Kell antigen.
If the father is homozygous, the baby has a 100% chance of being Kell positive.
If the father is heterozygous, the baby has a 50% chance of being Kell positive.
You should have an appointment set up with an MFM.
If your titer is below critical you need to have your titer checked regularly.
Titers do not always predict how aggressive the antibodies are, but often, high titers mean the baby is in more danger.
If your titer is 4 or above, MCA scans need to start between 16-18 weeks. No later than 18 weeks!
If you have a titer in the hundreds or thousands, you should have your first MCA scan at 15-16 weeks. I had my first one with Lucy at the end of my 17th week and it was too late by then. I had my first MCA scan with Nora at 15 weeks and my first MCA scan with Callum at 14 weeks.
Just because it is your first sensitized pregnancy, it doesn’t mean the baby won’t be affected. I lost my baby in my first sensitized pregnancy.
You usually don’t HAVE to know whether the baby is Kell positive or negative. The doctors can monitor baby as if (s)he is positive since the methods used to monitor are safe and non-invasive.
If your titer is critical, you should have MCA scans every week. Fetal anemia can develop very quickly so waiting over one week to do an MCA scan is putting your baby at risk.
When the doctors do the MCA scans, they also need to check for other signs of anemia or distress in the baby (dilated heart, echogenic bowels, ascites/fluid starting to collect in the organs, excess amniotic fluid, signs of distress, etc.)
If the MCA scans are showing an upward trend or are getting close to 1.5, the MCA scans can be done twice a week.
When your MoM gets to 1.5 or over you need to have an IUT (intrauterine blood transfusion.)
The IUT needs to be performed by someone who has had experience performing the procedure.
If you have already lost a baby to these antibodies or a previous baby was seriously affected or you have a titer in the thousands, plasmapheresis and IVIG should be considered. With a little work, most insurance companies WILL cover these treatments. Here is the study Dr. Moise did showing the efficacy of these treatments for severe isoimmunization/alloimmunization in pregnant women.
If your baby becomes anemic very early in the pregnancy, an IUT can be performed by putting blood into the baby’s belly (IPT) instead of the umbilical cord (IVT.) You could also start IVIG treatments right away if there are signs of anemia very early in the pregnancy. I have seen severely anemic, hydropic babies at 16 weeks saved because the mother was started on IVIG right away. The anemia disappeared and the fetal hydrops resolved because of the IVIG.
Babies should be checked by ultrasound the day after the IUT to make sure they aren’t in distress. My MFMs insisted that Lucy did not need to be rechecked for a whole week after her IUT (even though her beginning hematocrit was six, which is extremely low.) She was dying that entire week and by the time they scanned her again it was too late. Nora (my rainbow baby who survived) always had an ultrasound 24 hours after her IUT.
In severe cases, IUTs can be performed only days after the first one if the baby needs it.
After the baby is viable, many doctors recommend steroids to develop the baby’s lungs before an IUT is performed. If an MCA scan is done after the steroids have been administered, it usually will give a false low number. The MoM will be lowered but the baby will still be anemic. It’s best to only administer steroids once the MFM has decided to do the IUT.
Here is information regarding after birth care for your baby . You can print this information off and ask if your MFM agrees with it, but often it is a neonatal team dealing with baby at that point and not so much the MFM so it might not be as relevant.
I would like to end this post by saying if you have lost a baby to these antibodies, I am so very sorry. If your baby died because (s)he did not get the right monitoring and treatment, the last thing I want you to feel is guilt. I know how hard that is, though. Lucy would probably be alive today if she had received the care Nora received and I have struggled a lot with guilt because of it. I know that when I was pregnant with Lucy, I did my very best to save my baby. I did everything I knew how to save her and I know that you did too. We honor our babies’ lives by using their stories to prevent other babies from going through the same thing. Our babies felt nothing but love from us their whole lives and we should hold our heads up proudly knowing that we did the best we could to save them at the time.
This blog post was written in loving memory of:
HUDSON JOSEPH HERDMAN
LUCY DAIR WEATHERSBY
RYLEE ANN-MARIE
EPHREM FABIAN MEYER
KRISTIAN MICHAEL PINEDA
JULIA MARIE GETTMAN
GRACE DAISY MARIE PUCHMEYER
GABRIEL ZACHARIAH LUCAS
ADALYNN FAITH LUCAS
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.
Lucy’s third heaven birthday is coming up at the beginning of February. I wonder what kind of presents we would be buying her if she had been born alive? I wish we were preparing to celebrate her third birthday like we are getting ready to celebrate Liam’s seventh birthday and Asher’s fifth birthday…with presents, cakes, parties, friends and family. What I really want is for her to just be here with me and for all the time I’ve missed with her to be made up. Obviously, these things can’t happen but there is something that YOU can get her for her birthday. I would love to see how her story has impacted you. It brings me so much joy and comfort when I realize that GOOD has come out of her death. I have a big favor to ask: If you have been impacted by Lucy’s story would you be willing to share that with me? If your baby has been helped by our experience with anti-kell antibodies, if you have been comforted in a time of mourning, if your faith has been strengthened, if you have been encouraged in your journey to build your family or if you have been impacted in some other way, could you email me at [email protected] and tell me about it? Or you can just leave your message in the comment section here. It doesn’t have to be long or well written, just a sentence or two telling how you have been encouraged. That would mean so much to me. I would love to honor Lucy by sharing your story here on her birthday. If you DON’T want your experience shared on my blog just specify it in your message. Let’s all come together and show the world that even the smallest babies and the shortest lives can have a BIG impact on the world. Thank you all ❤
Our family has been enjoying our little Nora so much lately. She is probably the happiest, most laid back baby I have ever encountered. It’s almost like she KNOWS how amazing it is that she’s alive and she enjoys being with us so much.
My mom said the other day, “She just doesn’t seem REAL.” Nora is the embodiment of joy and light. I am constantly amazed that even with such a violent, dangerous entry into the world she is so peaceful. Our lives are so different now that Nora is here in our family.
It is mind boggling to actually be experiencing JOY again when only two years ago I felt like I literally couldn’t make it through another hour because of the pain I was in.
It has been almost three years since my daughter Lucy died. Only in the past few months have I really noticed how much healing has taken place. This past Halloween was the first holiday I was actually able to celebrate (although most of it was spent in the ER with Nora.) I looked forward to picking out costumes with the boys and finding something adorable for Nora to wear. I enjoyed Thanksgiving with my family and to have Nora sit with us around the table felt like such a miracle. I was even excited about Christmas this year. Of course, I cried for Lucy on Christmas and had that heavy, fearful feeling of loss in my chest, but I was also able to enjoy Nora’s first Christmas. In years past I would dread Christmas for weeks before it arrived because it seemed impossible to celebrate without Lucy here. So many huge healing steps have happened lately. I am able to notice and enjoy things like the changing seasons, Liam’s school activities and Asher’s preschool theme days. I am actually starting to care about small, “meaningless” things like my hair and the weather and our family budget. I can invest in relationships again and actually absorb what other people are saying. I am able to go to Target without having an emotional breakdown and I can attend family functions again. I have really sad, dark days sometimes, but they are coming less than they used to. Birthdays are still very hard for me and singing the Happy Birthday song around a cake full of candles is almost unbearable, even when it’s my own children’s birthdays, but I’m optimistic that that will change in the future.
When I think back to the weeks and months after Lucy died I realize that this healing that is just now taking place was expected of me then by many people. We had just moved into a new house the week before Lucy died and many people (with good intentions, I know) chose to acknowledge the new house but not my new daughter who died. I was asked many times how we were enjoying our new house. I was so deep in the grief fog that sometimes I thought, “What new house?” I wasn’t even aware of my surroundings and I was in no shape to actually care about or enjoy the house I was living in. Most people thought I would be healing after several months. They expected me to be able to come to family functions (where triggers lurked behind every corner) and to celebrate holidays and actually engage in small talk. I know that the people who expected these things of me just hadn’t experienced a loss like this, and they didn’t understand how it felt. I didn’t even know how it felt until it happened and even then I was so impatient with my grieving. I was exasperated after several months when the healing didn’t come and the grief weighed me down even MORE than before. But now that the healing is starting to take place I know that it takes YEARS, not months, for the inner healing to start showing on the outside. The pain is only just now lessening. I’m amazed that I have learned how to pull my mind away from the grief and see past it and live in the present. This is a new skill, only learned after years of practice. After Lucy died my grief was like a wall that slammed down in front of me; like a solid, unpeneterable brick wall with giant graffiti letters scrawled across, “LUCY IS DEAD.” Everything else in the world was on the other side of the brick wall. I couldn’t see past the grief, no matter how hard I tried. How many people have the ability to will themselves to be able to see through a brick wall? Slowly over time that brick wall has thinned and morphed into something lighter and more transparent. It’s still there, right in front of my face and I know it won’t be removed until I get to heaven, but I can now see through it, like a net. Often a trigger will cause the net to come back into full focus and the sadness is debilitating, but I am learning how to bring the rest of the world back into focus.
There is no set timeline for grief but it is much more accurate to count in years than months when it comes to healing. If you know someone who has recently suffered a devastating loss, remember that the way you think the grieving person should be feeling after three months is the way they will probably feel after three years. Please be patient and let them grieve at their own pace. I felt such incredible pressure to “get over it” quickly. Well, the “it” is my daughter and I won’t ever get over her. I pressured myself as much as other people pressured me to heal before I was ready (as if I had a choice in the matter.) Now I wonder, what was the rush? Why the push to be “better” when I had no control over my healing pace? If I could do it again I would just sit in the grief and let myself feel whatever I was feeling without guilt or a need to please others. I would set up better boundaries and allow myself to say no to the birthday parties, the holidays, the trips to Target and the family vacations without feeling bad about it. I wish I knew back then what I knew now, that the healing will come on it’s own timeline and it will take much longer than I expected…but that it WILL come.
Psalm 30:5 Weeping may last through the night, but joy comes with the morning.
Today, like most days, was a mixture of deep gratitude and grief. I think those who have suffered great loss have also been given a new perspective on life and a deeper sense of gratitude.
My four year old, Asher, had his preschool Christmas play today. He was such a cute little wise man…yawning, playing with his crown and desperately searching the crowd for my face.
The four year olds sang their songs last since they were the oldest kids in the preschool. I had to leave the room when the two year olds went on stage to sing. I sat on a couch in the lobby crying for Lucy while Nora babbled and smiled in my lap. I thought back on the three previous Christmas programs I had attended there. Liam’s first one when I was pregnant with Lucy…I tried not to throw up during his performance, I was so nauseated and anxious about my baby. The next year I almost couldn’t sit through the performance because I was so crushed with grief. The place seemed to be crawling with little babies and pregnant women. I had lost three babies that year and had no hope of bringing home my own living baby ever again. I thought I was going to have a panic attack and it took me days to recover emotionally. Last year I sat watching three year old Asher in his first Christmas play. I was pregnant with Nora…so nauseated and so terrified that I would lose the baby. And then today, there I was crying on the couch for my two year old Lucy and smiling at my miracle baby in my arms. Such a strange mixture of joy, gratitude, grief and loss. I know that I was probably a trigger today for some other hurting woman who had lost a baby and I hate that I made her pain worse. Nora sat perfectly in my arms the whole time, smiling sweetly at everyone. She is medicine to my soul.
When the two year olds were finished, I went back into the sanctuary and watched Asher file onto the stage and my heart overflowed with love. I thought about what a blessing he is to me and I reminded myself that somewhere out there a mommy was missing her four year old just like I was missing Lucy. Asher could have died like Lucy did. He has kell positive blood just like his daddy and sisters, but because I only developed the antibodies after I gave birth to him, he was safe. If I had developed the antibodies before I got pregnant with him, he would have been stillborn. Oh how happy I am that I got to see my four year old perform in his Christmas play today! I love having Asher here on earth with me and I love that I know what color his eyes are and what his voice sounds like. Today was a gift, even though I had to live it without Lucy. I love my life and the BEST part is that it ends with heaven.
I am so sorry I haven’t written any blog posts lately. I have a lot of posts written in my head, I’m just struggling to find time to get them typed out. This post was supposed to be published on October 25th, but I wasn’t able to finish it completely so I’m only just now posting it! Even though I’m frustrated that I don’t have time to blog like I want to, I am savoring the fact that I have a new little baby and my two big boys who are taking up all my time. I still can’t believe I get to have three kids on earth. Here is the post from October 25th…
Three years ago on this day I found out I was pregnant with my third child; my first daughter. How strange that I just gave birth to my “third child; my first daughter” as the world sees it. Every year from October to February I relive my pregnancy with Lucy and in February I relive her birth. It is traumatic. I wonder if I will ever get to a place in my life where I don’t notice these dates, where the 8th of every month isn’t a sharp reminder of my daughter who isn’t here. I wanted her so much. This is my journal entry from October 25th, 2012:
I’M PREGNANT!
I can’t believe it! I’m so excited. This never gets old. A new baby for me to love for eternity. It feels totally unreal. How can there be new life so recently created in me right now? I feel like there should be fireworks or at least some applause!
Thank you, my sweet Father,
You give me so many beautiful gifts. Thank you so much for this new baby. I can’t believe you’ve trusted me with another life to nourish. Another heart to teach about you. I don’t deserve any of your blessings, yet you lavish them on me continuously. I love you. Thank you for my new sweet baby. I wonder who she/he is, what will she be like? look like? I am ecstatic. (I also have a lot to do.)
Three years later and I still don’t know who she is, what she looks like now, how her voice sounds or what color her eyes are. I still feel completely broken over her absence in my life. This year, as I relive my pregnancy and the birth of my third child I know it will be harder because now I know that she probably could have survived. I have my living, breathing baby Nora here in front of me as a reminder that Lucy could have lived. Ever since Nora was born I have had a hard time with this knowledge and I often wake up at 2 or 3 am frantically thinking through how I could have saved Lucy. It is a devastating feeling. The doctors should have done many things differently. When I asked to try plasmapheresis and IVIG they should have said YES instead of brushing me off. I should have kept pushing for the treatment instead of trusting them. I had no idea that they weren’t well experienced in this type of pregnancy complication, I didn’t know how rare it was. I should have left the state and asked for a second or third opinion. Why did I stay here and trust the doctors? My daughter is dead because of it.
I know that regret is always a part of losing a child. It is such a natural instinct to NEED to protect our babies that when they die we can’t help but feel guilty and regretful. Deep down, though, I know when I look back at my pregnancy with Lucy that I was doing everything I knew how at the time to save her. I did my best, I just didn’t know what to do. With Nora, I knew what to do and she is alive.
Elisabeth Elliot shared part of a letter that her grandfather wrote to her grandmother after their son was blinded by a firecracker accident:
Surely we CANNOT guard against all the contingencies of this complex life, and no one who has poured out life as you have for each one of your children should let such regrets take hold. None of us could be alive to the pressing needs of today if we should carry along with us the dark heaviness of any past, whether real or imagined…I know how sickening remorse is, if anyone knows; yet I also know, as you do, the lift and relief of turning the whole matter over to Him.
Whether real or imagined…. Sometimes I wonder if I’m just blowing everything out of proportion- maybe Lucy never could have been saved? But whether my regret stems from things real or imagined, all of it needs to be handed over to Him. When I start getting swamped with regret I need to made a conscious effort to turn my eyes from the past to God. During both of my high risk pregnancies I would regularly envision myself holding my baby and reaching out and placing her into God’s strong hands. In the same way, I need to place the past and all the regret that comes with it back into His hands. It was always in His hands to begin with. Not one minute of Lucy’s time in my womb was out of His control and He could have saved her. I just have to choose to trust Him again, even though He decided to let my baby die.
It is hard to understand WHY God let Lucy die. I prayed constantly throughout my pregnancy with Lucy for God to show me how to help her, to give me wisdom, to save her, to do a miracle. I had great faith and I trusted Him to take care of my baby girl. He let Lucy die and He let Nora live. I will never understand His decisions until I’m in heaven. It is comforting to remember, though, that God had all of my girls’ days written down in His book before any of them came to be.
Because of Lucy, I have been able to help many women who are in the same place I was in when I was pregnant with her. So many women with anti-kell antibodies (or other antibodies) are searching for help since their doctors don’t really know how to treat them, they receive incorrect information or they aren’t given all of their treatment options. They just want to know how to keep their babies safe. Every time I’m able to help one of these babies it brings a little more meaning to Lucy’s life and death. I think the main reason that Nora is alive and Lucy is in heaven is because God had different purposes for their lives. Lucy is still helping many, many babies here on earth and her own little sister is alive because she died. Just because Lucy is in heaven it doesn’t mean she is done influencing this world. Perhaps some people’s purposes are meant to be fulfilled while they are here on earth and some are meant to be fulfilled after they have passed on to their real home. I am seeing Lucy’s life purpose slowly play out as other grieving Mamas are comforted and babies are helped by her story. I look forward to watching the rest of Nora’s life purpose emerge as she grows (we’ve already seen God’s amazing power at work in her life.) Both Nora and Lucy are going to leave a unique, lasting imprint on this world, regardless of how long they were here. I’m so proud of both of my girls and I’m thankful that I get to be their Mama.
Today our baby Callum is two weeks old and he is doing well in the NICU here in Atlanta. My mom and Nora and I have been staying at the Ronald McDonald House half a mile from the hospital and they have been amazing. I really don’t know what we would do without the RMH. Callum lost some weight after he was born but has now surpassed his birth weight. He is really good at breastfeeding and taking a bottle but he often falls asleep before the feeding is finished so he still depends on his feeding tube some for nutrition. Callum’s bilirubin hasn’t been checked in a week and his hematocrit was last checked a couple days ago so I have been pushing for them to recheck those levels soon. A few of his doctors and nurses have been very nonchalant about his HDN (hemolytic disease of the newborn.) Occasionally I have to remind them that this isn’t typical preemie jaundice or normal iron deficiency anemia. It can be a very sneaky and dangerous disorder if not followed closely. I know babies who have died from HDN and many others who have permanent brain damage because their HDN was not treated appropriately after birth. Anyway, I’m hoping that the doctor will recheck Callum’s bilirubin tomorrow and his hematocrit soon. I really wanted them checked today but the doctor didn’t want to for some reason. The doctor feels pretty sure that Callum won’t need another blood transfusion but I think he will need one by the end of the week and probably at least one more in a few weeks. His retic is still basically 0 (I think it was 0.1 the last time they checked) and his hematocrit was 26 a couple days ago. They said they would transfuse when his levels got to 22-24 and since his retic shows us that he isn’t making his own red blood cells yet, we can be fairly certain that he will need a transfusion soon.
We have been working through the checklist we were given of things to complete before Callum can be discharged from the NICU (CPR class, follow up pediatric hematologist appointment scheduled, etc.) The doctors and nurses are hopeful that he might be able to come home by this weekend! Callum will be doing his carseat test tomorrow to see if he can handle sitting in a carseat for an hour and a half without struggling to keep his oxygen up. We are so thankful that he is doing well and getting close to coming home! It will feel so good to have our family all together again. I miss Josh and the boys so much. Nora still hasn’t been able to meet Callum since siblings age three and under are not allowed into the NICU. I cannot wait for her to meet him. She is going to be obsessed with her baby brother.
I am still working on Callum’s birth story so hopefully I can finish that soon! Here are a few pictures of our baby Callum from the past week:
Surprise! Our miracle baby is here. Callum Joseph Thomas was born exactly one week ago at 34 weeks and 4 days via emergency c-section. He weighed 6lbs 6oz and was 18.5 inches long. I went in for my last IUT and ended up having a baby instead! This week has been an absolute blur and I am just now able to sit down at a computer to quickly update everyone. Baby Cal needed some breathing assistance at first but is now breathing on his own and is doing great in the NICU. I just moved into the Ronald McDonald House in Atlanta to be close to Callum until he’s discharged. I will write all about Callum’s birth story in my next blog post but for now, I’ll leave you with a few pictures of our sweet boy. Thank you all for praying for us! We are so thankful that our baby is here alive and well.
My first quick look at Callum before he was whisked away to the NICU
Finally able to get on my feet 12 hours after the c-section and go see Callum in the NICU.
Holding Mommy and Daddy’s fingers
Daddy’s first time holding Cal
My first time holding Callum
Most of the pictures are blurry because we had to keep our phones in a ziplock bag while in the NICU so the pictures were taken through the plastic.
Right after he was moved up to the “growers and feeders” floor of the NICU for less critical babies.
On July 19th our beautiful Nora Juliet turned two years old! Her birthday will always feel miraculous and holy because it is the day God fulfilled so many promises He made to me when I was at my most broken place. It was the day that I did the “impossible”….I gave birth to a healthy, full term kell positive baby girl. God used her to bring light back into our darkness, to heal gaping wounds, to restore hope, to empower women all over the world not to give up. Nora will always be our reminder that God is indeed good, and He does love us. She is our reminder that God places our deepest desires in our hearts for a reason and we do ourselves an injustice if we ignore them, especially when He is calling us to step out in trust. I know that He has great plans for Nora’s life. Thank you, God, for giving me this daughter I can keep. We love her so much and have loved watching her develop and grow over the past two years. We praise you, for you have done gloriously.
Isaiah 12:5 Sing praises to the Lord, for He has done gloriously; let this be made known in all the earth.
Now, a little bit about Nora (because I still marvel that we get to know her on earth and see her personality develop!) Nora is the darkest of our kids- dark brown eyes, darker skin tone and darker hair. As her hair grows longer and longer it gets curlier and curlier and she now has ringlet curls all over her head. She is super maternal and bossy and sweet. She will boss her brothers, her cousins, adults and animals, and I’m sure her baby brother will get it when he arrives too. She wants to take care of everybody. She is independent and loves to drink out of a normal cup, eat with utensils (ALWAYS) and help me unload the dishwasher. She speaks in full sentences and has an amazing vocabulary. At age two her brothers knew all of their letters and numbers but she only knows A, O, S and X. She’s much more interested in relationships than things like numbers or letters. Nora talks and sings constantly and makes up songs about things she’s thinking about or doing. Her favorite place to be is anywhere with people, especially friends and extended family. I think her favorite person on earth is “Manga” (how she says Grandmama) and they have a very sweet, special bond. I sometimes think this is because “Manga” was the one who came to Houston with me and lived in the Ronald McDonald House with us for months. Nora heard Manga’s voice in utero as much as she heard mine and so I think a special bond was formed. Often, Nora wants to go to Manga instead of me when she has he chance. Nora is our daily delight, making us laugh every few minutes. Seeing her with her Daddy is still one of my greatest joys because I ached for so long to see Josh with his own daughter in his arms. Her brothers adore her and I enjoy having a daughter so much. Thank you, God, for this gift.
Nora with her Manga
First train ride
First trip to the beach
Nora at 22 months, me at 22 weeks pregnant.
Exploring Hurricane Creek
Giving Daddy pats
Baby boy is still doing well but his anemia continues to worsen gradually. His MCA scan this week (27w 2d) was the highest it’s been, at 1.39. Dr. Trevett really thinks next week will be the week that baby needs his first IUT but I’m not so sure. We tentatively scheduled the IUT for Monday but will rescan this Thursday (tomorrow) to see how baby looks. If he’s getting close to the 1.5 cutoff we will plan to have the IUT on Monday. But if baby’s numbers look about the same we will cancel Monday’s IUT. We still can’t believe we’ve made it this far without a transfusion! Baby looked great on ultrasound and is estimated to weigh 2 lbs 11 oz. Here are a few pictures of him from the past couple of weeks:
And here I am at 27 weeks, 4 days pregnant.
We are still struggling to come up with a name for this miracle boy of ours. Most of the names we like are pretty weird (Liam, Asher, Lucy and Nora were all the most “normal” names on our list at the time.) There are a lot of names that we kind of like, but none that we love. Hopefully we will come up with the perfect name soon. We just started getting things ready at home for our boy since we are feeling more confident that we will actually get to bring him home alive. We live in a small, three bedroom house so it is going to be a tight squeeze but we couldn’t be happier to have to fit our FOUR kids into our cozy little house. I never thought we would be able to have four living children! I will do my best to update the blog after my ultrasound (and four hour drive home) tomorrow. Please pray that baby’s numbers aren’t any higher and he gets another week without a transfusion.
I’m now 25 weeks and 3 days pregnant and the baby is still doing well (poor little guy still doesn’t have a name though!) We are so very grateful to have made it this far without needing an IUT. My next appointment is on Monday when I’m 26 weeks and 2 days. At 26 weeks Nora was having her second intrauterine blood transfusion. Here are baby boy’s MCA scan numbers over the past few weeks:
You can see that his numbers have gradually increased over the weeks but he is still staying well under the 1.5 cutoff. Right now he is probably slightly anemic but there are no other signs of trouble on his ultrasounds. His heart looks beautiful. Actually, all of his organs look beautiful (such a blessing) and there is no extra fluid anywhere. He is measuring about two weeks ahead and weighs almost 2 pounds. We are thrilled to see our boy do so well and we give God all the praise for this miracle.
In the past couple of weeks we have finally started explaining to Nora that there is a baby brother in Mommy’s belly and that one day he will come home to stay. This is a huge leap of faith for me because we don’t actually know if he will come home or go to heaven, but lately we’ve been feeling more hopeful than ever that he will survive, so we let the secret out. I’m also HUGE and Nora was starting to wonder what was going on with Mommy’s weird body. I just remember so vividly trying to explain to 2 year old Asher that baby Lucy wasn’t going to come home like we had said and that she had gone to heaven instead. It was terrible and it was so hard for him to wrap his little mind around the concept. I wanted to protect Nora from feeling that loss if her baby brother died so I waited much longer to tell her about the pregnancy than the boys (they knew as soon as I came home with a permacath sticking out of my chest at 10 weeks.) Nora is SO excited about her baby brother and talks about all the things she wants to do with him. In fact, we sat on my bed two nights ago, just Nora and me, having a real heart to heart conversation for the first time. We talked all about the baby and the fun things she would get to do with him once he gets here. It was so special because I felt this sweet connection to my daughter, like we were friends, and it’s something I’ve been looking forward to ever since I found out that I would have a daughter I could keep. Anyway, Nora told me she was going to rock her baby brother, sing to him (she sang me the song she made up for him), put his socks and hat on him, give him milk, give him a bath and when he falls asleep she will shout, “Wake up beebee!” so he can be awake with her (we’ll have to work on that last part.) She also said we should name him “Beebee Callum.” Goodness, she has a lot of ideas and plans for a baby she hasn’t even met yet. With each adorable proclamation of hers my heart trembled and I prayed, “Oh Lord, let it be. Let her hold him and sing her special song to him and even wake him up when hes’ napping, I don’t mind. Please let us experience life with our boy.”
Please continue to pray for our son, that God would strengthen him in this fight for life and protect him from harm. Please pray that Nora will get to be a big sister and meet her baby brother alive one day this fall. I will try to do a better job of updating the blog more frequently. Usually, no news is good news, though!
Yesterday I had my 13th ultrasound and it wasn’t as great as the previous 12 have been, unfortunately. I was 18 weeks and 2 days yesterday and it looks like my antibodies are starting to affect baby. His MoM levels were around 1.3 yesterday and all of his previous scans have been less than 1.1 so there definitely was a jump this past week. Dr. Trevett also noticed that baby’s bowels looked slightly echogenic on the ultrasound. This means the bowels/intestines looked brighter on ultrasound than usual which can be normal or can be a sign of fetal anemia. Dr. Trevett felt uneasy with the jump in baby’s numbers and the possible echogenic bowels so he wanted me to go be seen by Dr. Moise in Houston this Thursday. We were kind of scrambling at that point to get the appointment set up and trying to get things set up at the Ronald McDonald House in Houston as fast as possible (we can’t afford to stay in a hotel but it takes a while to get in at the RMH.) I wasn’t TOO nervous because the baby really did look great otherwise on the ultrasound. He was very active and there were no signs of hydrops. His heart looked perfect and heart function was good. My amniotic fluid levels are still normal as well. Nora’s MoM at 18 weeks was 1.48 so I still feel pretty good that this baby is at 1.3. It WAS a pretty big jump in just a week so I do feel more nervous now.
Anyway, as we were making all of the arrangements to go to Houston and I was trying to wrap my mind around the situation, Dr. Moise called me and asked how baby looked on ultrasound and I told him about the echogenic bowels, the MoM levels, etc. and he thought that I probably didn’t need to come all the way to Houston yet. He said he has never seen a baby with (accurate) MoMs less than 1.5 who was actually anemic. He also discussed everything with Dr. Trevett and the new plan is to have another ultrasound with Dr. Trevett this Thursday in Atlanta and if the baby is worse, I will go to Houston. Dr. Moise also reminded me that it is normal for MoMs to go up one week and down the next week. The thing that is concerning is when there is a consistent upward trend, but even then baby is safe until the MoM reaches 1.5. Dr. Moise does want me to redo the three rounds of plasmapheresis (treatments I had earlier in the pregnancy to remove antibodies from my blood) and then have two back to back rounds of IVIG. Since the plasmapheresis got my titer from 512 down to 64 last time he is hoping it will work well again to lower my titer and buy baby some more time before he needs a blood transfusion in utero. At the moment my titer is 512.
I am on board with this plan but I am really hoping that I don’t have to have the permacath surgically placed again. The specialist is wanting to place another permacath in order to do the plasmapheresis treatments but I’m trying to see if we can do them using my port and an IV instead (they have to have two lines of access during plasmapheresis.) The permacath is this big thing they sew into my chest that runs through my jugular right down to the opening of my heart.
The doctors have to use x-ray guidance during the procedure to insert the permacath which could expose the baby to x-ray radiation. It’s also painful, uncomfortable and I can’t take a shower or swim with it in. It increases my risk for infection and blood clots also. I would hate to have the permacath placed just for three rounds of plasmapheresis. This is the port I have in now. It’s under the skin and much more comfortable and I can get it wet.
Please pray that I can avoid the permacath somehow and that the ultrasound this Thursday shows a healthy baby and no signs of anemia. My side effects from the weekly IVIG infusions have finally started easing up a little so thank you to everyone who has prayed for us regarding that. It is so wonderful not to deal with daily migraines and the nausea is even starting to lessen which is a HUGE blessing. I’ll update as soon as I can after the ultrasound on Thursday!
Another good update, thank you Lord! Our baby’s weekly scans are still looking perfect and he is thriving so far. We thought we would be moving MCA scans from once a week to twice per week, but he keeps looking so good on ultrasound, and his numbers are showing no anemia, so we are still able to scan only once per week. I am amazed at how well baby boy is doing! He is even doing better than Nora was at this gestation, which is a miracle. Here is a side by side look at all of my kell babies’ MCA numbers. Remember, once the number gets over 1.5 the doctors know baby is anemic and baby either needs an intrauterine blood transfusion or delivery.
14 Weeks: Lucy— Nora— Baby Boy 1.03
15 Weeks: Lucy— Nora 1.3-1.48 Baby Boy 1.06
16 Weeks: Lucy— Nora 1.16-1.34 Baby Boy 1.07
17 Weeks: Lucy 2.5 Nora 1.2-1.3 Baby Boy 1.03
18 Weeks: Lucy 2.7 Nora 1.48 Baby Boy–1.3
Every week that passes means baby’s survival rate goes up just a little bit. Only a few more weeks to viability and I can breathe a little bit easier. Last week at 16 weeks baby was measured for the first time and he weighed about 6 ounces, which is a good size for a baby at that gestation. I had my titer checked last week to see if my antibody level had gone back up. It started at 512 (8 and above is considered critical) and after my last plasmapheresis treatment it was all the way down to 64! But yesterday I found out that it is back up to 512, which was kind of discouraging but not surprising. The same thing happened during my pregnancy with Nora, although it never got nearly as low as 64 after the plasmapheresis. Thankfully, even though my titer bounced back up to 1,024 with Nora, the weekly IVIG infusions still worked and kept Nora safe from my antibodies until about 24 weeks. So, even though my titer is high again, it doesn’t mean the IVIG isn’t working. It is obviously working because our baby isn’t anemic yet. He is always very active on ultrasound. I was really concerned when I didn’t feel him moving at 15 weeks like I did with my other four. We discovered that I have an anterior placenta which means the placenta is covering the front of my uterus and is acting like a cushion when baby kicks. They told me that I probably won’t feel him move for a long time. Thankfully, as I type this I can feel him kicking and squirming so that is comforting and exciting. Because I have an anterior placenta, the doctor will have to go through my placenta with the needle when we do IUTs.
Feeling the baby move and seeing him on ultrasound are proving to be very important bonding moments for me. After a woman loses a baby and is pregnant again, she usually struggles to be hopeful and expectant like most pregnant women are. I am often shocked when I see women announcing their pregnancies with wording such as “New baby arriving October 2017” because they just expect that their pregnancy will end with a living baby. Such confidence and hope! I couldn’t conjure it up, no matter how hard I tried. There is an innate sense of “self-protection” that kicks in after losing a baby. It’s primal and impossible to ignore, just like the love we have for our children. Yes, I will first pack this baby’s diaper bag for a stillbirth with blankets and tiny hats. I somehow feel safer if I prepare for every possible scenario in some small way. Then I will hopefully repack it with micro preemie clothes and items for a long NICU stay. Then, hopefully assuming we get past that point, I will finally pack his diaper bag in preparation for a living, full term baby with diapers and pacifiers and cute outfits, just like I did for Nora.
If a baby loss mom also has a high risk pregnancy, that only adds to the fear and anxiety. With Nora and this baby, when I saw the two pink lines on my pregnancy test I didn’t think, “OH, I’m having a baby!” I was filled with fear and awe and adrenaline, wondering whether this would end in another life altering tragedy or a breathing, living baby in my arms. I wasn’t REALLY able to savor my pregnancy with Nora or celebrate my second daughter until she was in my arms, alive, and then it all rushed on me at once, flooding me with the most delicious feeling of relief I’ve ever felt. Nine months of restrained hope suddenly released and poured out until my heart overflowed. And to this day it still overflows with awe and thankfulness and relief that she is here. Now I am in that waiting period yet again, wondering whether our family is heading toward some terrible precipice that will tear us and mangle us permanently, or if we are headed toward another of God’s miracles waiting for us like the best present under the tree in December. The waxing and waning of fear, peace, anxiety and hope are part of our everyday lives. But when I feel his little nudges and kicks and when I see him on the ultrasound rubbing his eyes with his tiny fists, practicing his breathing in and out, crossing his legs, waving and yawning, I feel that love and adoration wash over me. The pure strength of a mother’s love pushes all of that fear into the background. I feel connected to him and dedicated to him and HOPEFUL about meeting him here on earth. Thank you for praying for our boy. Hopefully he will continue to fight and conquer these antibodies week after week until he is safely in my arms.
Here are a few ultrasound pictures from his 17 week ultrasound yesterday:
Definitely a boy!
I’m now a couple days shy of 13 weeks and the fear is starting to set in. This is the most dangerous time of the pregnancy for the baby. My antibodies can now attack the baby since (s)he is making red blood cells, but if the baby gets anemic there is nothing the doctors can do at this point to help. The earliest the doctors can perform an intrauterine blood transfusion is 15/16 weeks.
So far, the baby looks great and I can now find baby’s heartbeat on my home doppler, so that is always comforting to hear. My first week of intensive treatments in Atlanta went really well. I have been so incredibly impressed with the medical treatment I have received at Northside Hospital. A couple of weeks ago I met with my MFM, Dr. Trevett (who reminds me so much of Dr. Moise) and my OB, Dr. Howard, and received treatment from my other two specialists Dr. Murphy and Dr. Franco. Dr. Murphy was in charge of my plasmapheresis treatments and Dr. Franco is in charge of my IVIG treatments. My insurance once again denied coverage of the plasmapheresis and IVIG treatments but Dr. Franco and his nurse, Val, worked so hard to get the treatments covered. They never asked me to do anything, they just handled it themselves and now the treatments are covered! Dr. Trevett’s nurse, Tami, has also been phenomenal, coordinating all of my treatments and appointments with various specialists and at different locations. I’m so thankful for this team of people who are working so hard to give my baby the best chance at life. I also have Dr. Moise following from afar and he is ready for us if baby gets in trouble early. This is such a different experience from my pregnancy with Lucy and the first half of my pregnancy with Nora. No fighting and challenging the doctors, no begging for the right treatment. I don’t have to print off medical studies to show the doctors how to take care of my baby, I don’t have to convince them that my baby is worth saving. I don’t have to doubt the care I am receiving. I trust my doctors and I have confidence in them. They respect me enough to listen when I tell them something and they collaborate with me for the best treatment possible. This is how healthcare should work. This is how a doctor-patient relationship should look. It is so worth the drive to have such amazing medical care and to have peace of mind. I wish I had known all of this when I was pregnant with Lucy. She would probably be alive today if I had only known in 2013 what I know now.
We had the genetic blood test done at 10 weeks to check baby for genetic conditions (trisomies) and got the results back at 11 weeks. We are so thankful to have a genetically normal, healthy baby! What a blessing! We also learned what the baby’s gender is but we won’t be telling anyone until after we find out the baby’s blood type. We feel like the blood type is more important than the gender so we will reveal the gender after we tell everyone whether baby is kell positive or kell negative. We should know those results in about 2-3 weeks. Thankfully this time I don’t have to do an amniocentesis like we did with Nora. I will be trying a new, non-invasive maternal blood test at 14 weeks to find out whether baby is kell positive or kell negative. Please pray that this baby is kell negative!
Some other good news we received came in the form of my antibody titer. I had three rounds of plasmapheresis (when they remove the plasma from my blood.) The plasma is where the antibodies are contained so the plasmapheresis treatments are used to try to lower the antibody titer (level) in my blood. When I had these treatments done with Nora my titer barely dipped at all and shot right back up to where it started (1,024.) I was expecting the same thing to happen with this pregnancy but we just found out that my titer after the third round of plasmapheresis was 64! What in the world?! My titer has never, ever been that low before so we are very happy about these results. We aren’t sure exactly why my titer went down so much this time…Could the baby be kell negative? Could the plasmapheresis treatments in Atlanta be better than the ones I had in Alabama? Maybe they removed more plasma this time? Could my body just be responding better to the treatments this time around? We don’t know, but we are thankful that the treatments seem to be working well so far. Often, in subsequent pregnancies, a woman’s titer goes up and the antibodies become more aggressive. It is rare for the antibodies to become less aggressive or for titers to go down in subsequent sensitized pregnancies. The fact that my titer got so low doesn’t mean that my baby will be less affected than Nora. It just means that the treatments are working and we can assume that my antibodies have not become more aggressive, which is very good news.
Please continue to pray for our baby. My next ultrasound is on April 24th when I am 14 weeks pregnant. I will update you after that appointment and then hopefully soon after that we will do a blood type/gender reveal! Thank you for following along and being so supportive. Our baby is blessed to have such an army of encouragers rooting him/her on!
Here is my last ultrasound of baby at around 10 weeks. Super active with a good, strong heartbeat.
Well, that happened a lot faster than we expected but here I am, nine weeks and four days pregnant. Baby is due on our anniversary and my mother in law’s birthday, October 21st. Since it took at least 13 months to conceive Nora and I just turned 36 we thought it would take us a long time to get pregnant. I read online that it takes a year and a half for the average 36 year old to conceive. We were shocked to see two pink lines so quickly. It felt unreal, like something that happens to other people, not me. We are so thankful for this baby’s life.
The first night after I got a positive test I was overcome with anxiety. I didn’t tell Josh, just wanted to sit with the news by myself for a bit before telling anyone. The whole night it felt like I was wrestling with demons of fear, anxiety and doubt. I absolutely could not sleep. My mind went through all of the terrible things that happened to Lucy, all of the intense treatments and procedures I would have to go through, the worry I would have to live with day after day while this baby is in danger in my womb, the fact that some people will think we are ridiculous for wanting another baby, the cost of the medical treatments, all the times I will have to ignore my boys and my Nora to focus on taking care of this baby. SO MUCH FEAR. And then suddenly, words of hope came to me and I shouted them into the darkness in my mind, “And my God lightens my darkness. For by you I can run against a troop, and by my God I can leap over a wall.” And the voices of fear and anxiety and doubt immediately were silenced. Peace washed over me and I have been filled with an incredible peace about this baby ever since. I actually had to google the words the next morning to see if it was a real verse and it is from:
2 Samuel 22:29-37 For you are my lamp, O Lord, and 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? This God is my strong refuge and has 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 your salvation, and your gentleness made me great. You gave a wide place for my steps under me, and my feet did not slip.
Josh and I have been praying specifically that this baby would be kell negative and that God would fill us with peace throughout the pregnancy. We have also been praying that God would not only give me courage to get through the pregnancy, but would allow me to actually enjoy the pregnancy since it will be my last. Just a couple of weeks after we found out we were pregnant our church had a “healing service” which wasn’t anything weird…they just called people who needed healing to come to the front for prayer if they wanted to. I felt compelled to go to the front even though no one knew about my pregnancy yet. Josh and I went to the front and I was prayed over by a few people. The main one who prayed for me was a woman who had lost a baby to full term stillbirth. She prayed over me for a couple minutes and then said, “I feel like God wants me to tell you that you will be filled with peace throughout this pregnancy and He wants you to ENJOY the pregnancy.” What a sweet word from God and confirmation that He has been hearing our pleas.
I want to write more but I’m out of time. Tomorrow I will have surgery in Atlanta to have a chest port placed and a neck catheter placed. The neck catheter will be for my upcoming plasmapheresis treatments and my port will be for my IVIG treatments. Please pray for peace and courage for me. During my last pregnancy the worst, most painful part of the entire pregnancy was the surgery to insert my permacath. The doctors changed their minds at the last minute and decided they didn’t want to give me any pain meds during the procedure. It was an excruciating, panic filled procedure. Please pray that they will give me appropriate pain medication this time and the baby will tolerate the procedure. I’ll try to update after the surgery and write a blog post with more details about my treatment plan.
Thank you so much for joining us yet again on another crazy pregnancy journey. We can’t wait to see what God is going to do.
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.
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!
So, I just wanted to give you all a quick update on our adoption. It has been almost five months since we started the process and we are now home study approved! We also recently finished our family profile book and received a copy in the mail for us to keep. We love it so much. This is the book that our agency will show to the birth parents when they come in to possibly make an adoption plan. The birth parents will look through several different families’ profile books and choose the couple that they feel a connection with. Here are a few pictures of our profile book:
Our agency will put up our online family profile soon, and I’ll share that here on my blog when they do. Now, there’s not much more for us to do but wait to be picked and pray for patience. Thank you to all of you for your support and prayers so far. We will keep you updated!
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:
Imagine going to Target with your three kids (or however many you have.) You’re shopping and everything is going well, then suddenly one of your children disappears. You feel frantic, you look everywhere for her, but you can’t find her. You wonder what happened to her. Now someone says you have to leave with just your other two. “But you have your two,” they say, “just concentrate on them.” Of course that’s impossible! Where is she? You can’t leave without her. Now imagine leaving the store and leaving your one. Imagine going home and doing the dishes and cooking dinner and having a conversation with someone. It’s almost impossible because all you can think about is the missing one. That’s how I feel every day. A part of me is missing and it feels impossible to function without it. It goes against every fiber of my being to live each day without my child. Every now and then I have a moment where I feel normal again and forget about the missing one. Then it hits me, she’s not here, and the feeling of sheer panic comes and stays. It reminds me of the parable Jesus told of the shepherd who had 100 sheep. One of them went missing. The shepherd left the 99 to go look for the one who was missing.
Matthew 18:12,13 What do you think? If a man has a hundred sheep, and one of them has gone astray, does he not leave the ninety-nine on the mountains and go in search of the one that went astray? And if he finds it, truly, I say to you, he rejoices over it more than over the ninety-nine that never went astray.
God is the shepherd, we are the sheep. He wants you with him like I want Lucy with me. If you don’t know him he will long for you until the day that you die. He loves you more than I love Lucy and Liam and Asher and more than you love your own children. He’s waiting for you and longing for you.
This morning I had my post-op check up to make sure Nora made it through the first 24 hours after the IUT safely. Thankfully, she looked wonderful on the ultrasound. She is head down and very low and I’m still having contractions everyday. If I didn’t know my body better I would think it was preparing for an early birth, but I have learned my lesson. With both of my boys I had regular contractions every day starting in the second trimester. I never was able to go into labor on my own, even after my due date, and was induced at 41 weeks. Even though Asher, especially, was over-ready to come out, my body did not go into labor. I doubt Nora will come until she is forced out, hopefully at 38 weeks.
After my appointment I had a quick tour of the NICU to become acquainted with it before I give birth. It was a surprisingly relaxing place to be and I’m excited about my Nora being there. I feel so blessed to be able to have a LIVE baby in the NICU!
Since Nora was being so still at her check up we were able to get some 3D ultrasound pictures of her. She has some chubby cheeks and a cleft chin like mine. I can’t wait to meet her face to face! As the ultrasound technician handed me the disc with all of Nora’s pictures on it, I had a flashback to another ultrasound technician handing me a different disc full of 3D ultrasound pictures. Except that baby girl was someone else’s, I just didn’t know it at the time. It was only nine months ago that I drove all the way down to Dothan, AL to pick up Kailee and then I drove her all the way to Florida to get 3D ultrasound pictures of “Scarlet.” (Kailee wanted to have them done in Florida, saying it was cheaper.) It was Liam’s first day of kindergarten, which I missed so that I could be there for Kailee and “Scarlet.” It was so strange to sit there and watch some other person have the wand roll over her belly, to hear the heartbeat and see the baby roll around on the screen but not feel any kicks or punches. It was the first time I had seen a baby on an ultrasound since Lucy died and it was extremely difficult for me (even though it was also wonderful at the same time.) It took me back to that day when her heart stopped and our world crashed. I tried to focus on the fact that the baby on the screen was my daughter, my rainbow baby. It felt strange, honestly. No one acknowledged me as the mother to be. The ultrasound technician probably just thought I was a friend of Kailee’s. I tried to love “Scarlet” as if she was mine, but I knew that she wasn’t mine YET and so I held back a special part of my heart. I kept it intact, but ready. I was ready to give her my whole heart as soon as she was mine. Now I know she never was mine. Today I had no problem looking at that screen and giving my whole heart to Nora. She IS mine already. I got to feel all the rolls, kicks and punches from the inside. What an unimaginable gift! Everyone acknowledges me as Nora’s Mommy already. Thank you, Lord, for this redemption and restoration that you have given me. Thank you for my rainbow baby who has my chin and the cutest mouth. I am blessed beyond belief.
And here I am at 27 weeks, 4 days pregnant.
We are still struggling to come up with a name for this miracle boy of ours. Most of the names we like are pretty weird (Liam, Asher, Lucy and Nora were all the most “normal” names on our list at the time.) There are a lot of names that we kind of like, but none that we love. Hopefully we will come up with the perfect name soon. We just started getting things ready at home for our boy since we are feeling more confident that we will actually get to bring him home alive. We live in a small, three bedroom house so it is going to be a tight squeeze but we couldn’t be happier to have to fit our FOUR kids into our cozy little house. I never thought we would be able to have four living children! I will do my best to update the blog after my ultrasound (and four hour drive home) tomorrow. Please pray that baby’s numbers aren’t any higher and he gets another week without a transfusion.
