This past week has flown by and here we are at 23 weeks, one week shy of viability, the biggest milestone that Nora will (hopefully) reach throughout this whole pregnancy. After my IVIG treatment last week we were able to go home for a short visit and it was wonderful. It felt so amazing to see all of my friends and family…siblings, parents, nieces and nephews and of course my Liam and Josh. Walking into my house felt like Christmas day. I didn’t realize how much I missed being home until I was there. I loved the feeling of my own bed, the privacy of being able to wake up in the morning and make coffee in my pajamas, cooking in my own kitchen, I could go on and on. For the third time, I unpacked the baby girl clothes, arranged them by size and organized them in hopes of bringing home our daughter. It was surprisingly hard to do, it almost felt like I was tempting fate by preparing for Nora’s arrival. I’m almost too scared to let myself believe that we might get to keep her. It felt like a huge leap of faith to actually open up the box and put her crib together. Lucy died before we ever bought a crib so we bought this one for Scarlet. We were on the verge of putting it together when we discovered Kailee and Peter’s betrayal. It has been sitting in the box untouched since then, but this past week we put it together and got it ready for our rainbow baby. It is so beautiful, exactly how I always imagined.
Asher was also SO excited to be home especially since he got to play with his brother (they miss each other desperately) and his cousins.
We drove back to Houston on Easter day and the next day was my 23 week appointment. Nora looked great on the ultrasound again. Her MCA scans ranged from 1.33-1.57. I had several different people do the MCA scan and all of the readings were below 1.5 except for two. The doctors discussed their plan of action and decided to give her another week to grow. They explained that this is pretty much the same range of numbers that Nora is in every week (and has been for about a month) and her anemia levels are not “trending upward.” If they notice that her MCA scans start moving upward or that she has more readings over 1.5 than under, they will do a blood transfusion. Every week that Nora gets to grow means that the blood transfusion will be safer and she will have a higher chance of survival. Next week she will be considered viable which means she could survive outside of the womb (with A LOT of risks and A LOT of intervention.) I asked the doctors when they would give me the steroid shots to develop Nora’s lungs and they said they would only give them if they felt like she was going to be delivered soon. Since she is doing so well they don’t think she needs them right now, which is very encouraging. I also asked the doctors what their plan was if Nora continues to stay where she is every week, right under the anemia cut off of 1.5. They said they plan to continue the weekly IVIG treatments until 35 or 36 weeks and then they will deliver. So far the IVIG is suppressing my antibodies just barely enough to keep Nora safe in the womb. Please continue to pray that she stays under the anemia level and that she does not need a blood transfusion. Also, please pray that my port does not get infected. Since it goes directly into my jugular and straight down to the opening of my heart, any infection would spread through my body rapidly and would be very dangerous for Nora. I’ve had this port in since January so we’ve done a good job of keeping it infection free since then, but lately it has started showing some possible signs of infection so I’m a little worried.
Every week when I get another good report from the doctor I am absolutely astounded. It feels like a new miracle every single week. All of the doctors besides one, gave Nora a 50% chance of surviving this pregnancy. Do you know what they were basing that 50% on? They were saying that she would only survive if she got my blood type, a 50% chance of happening. Well we’ve known for several weeks now that Nora did not get my blood type, she got her Daddy’s which would then put her odds of survival at 0%, if the doctors were right. But here she is, kicking inside me and doing flips right at this moment, full of LIFE, proving them all wrong. Sometimes I start to imagine that God is saying, “I told you so.” All those times after Lucy died that I broke down, literally lying on the floor sobbing and begging Him to give me another baby girl, He was listening. I wasn’t alone after all.
Psalm 9:12 He does not forget the cry of the afflicted.
I have dreamed of hitting this milestone since the day I found out I was pregnant. It seemed impossible. I thought we would have at least 2 or 3 intrauterine blood transfusions under our belt by now if we did make it this far, but by God’s grace I am 24 weeks and Nora still has not needed one transfusion! Babies are deemed viable at 24 weeks which means they could survive outside of the womb, although many do not survive if born this early. We are thrilled to be at 24 weeks today! Here’s the 24 week belly:
Unfortunately, my appointment today didn’t go that well. Nora will need her first intrauterine blood transfusion tomorrow, poor baby. Her MCA scan wasn’t that much higher than last week, but there were a few other signs of anemia and Dr. Moise said we’ve pushed it far enough. Her levels were mostly between 1.5-1.6, with two readings at 1.4. Dr. Moise noticed the beginnings of a little bit of fluid starting to build up in her intestines and her heart looked a little dilated, both signs of anemia. Other than that, Nora looked great and is measuring right on track at one pound nine ounces. I just want to say how thankful I am to have the best doctor in the nation taking care of my Nora. He knew exactly when the right time for her transfusion was because he knew just what to look for on the ultrasound. I feel very confident with him in charge and it is a HUGE relief.
It was hard to be at the appointment alone, without Josh to help me take in all the information and make big decisions. I was asked if I wanted to try to save Nora if there was a complication or just let her die peacefully, since her odds of surviving outside of the womb aren’t that good. I have watched helplessly as my other daughter died without intervention and I don’t intend to do it again. We will fight with every intervention possible, if needed. I was given the first of two steroid shots to develop her lungs and will be given the other one tomorrow morning before the procedure starts. The whole neonatal team and pediatrician will be in the operating room tomorrow in case something goes wrong and we have to deliver. Occasionally (rarely) the baby’s heart will start to slow down when he puts the needle in the umbilical vein. Usually the heart rate goes back up if he takes the needle back out, but sometimes it continues to get slower and slower. If that is the case, he has some drugs ready (can’t remember what they’re called) that he would give her to jump start the heart rate and get it back up. If that still doesn’t work, they will sedate me and do an emergency c-section and have Nora out in minutes. If she does have to be delivered, her odds of survival are pretty low since she’s only 24 weeks and 1 day and she will be anemic and sick to start off with. The steroid shots will help her lungs, though. I was told there is a very small chance that she will have to be delivered tomorrow, so I’m clinging to that hope. There is a 1-2% chance that Nora will die from complications associated with the surgery, such as premature rupture of the membranes, premature labor, infection, placental abruption, etc. Please pray that NONE of these complications arise and that Nora comes out (or rather, stays in) safe and healthy.
So, now that I’ve got the worst case scenarios out of the way, I’ll try to explain how the procedure will go tomorrow. It will start at 7:30 am and they will start by partially sedating me. Next they will stick a long needle through my belly (guided by ultrasound) and (hopefully) into the umbilical vein. The doctor will draw some of Nora’s blood and test it right then to see exactly how anemic she is. They will be looking specifically at her hematocrit which tells them the percentage of red blood cells in her blood. Dr. Moise thinks hers will be somewhere in the high twenties. The hematocrit number helps them know exactly how much blood they need to put in her. If they put too much it could kill her and if they put too little she will remain anemic and sick. They also use this number to determine exactly how many days they can go until her next blood transfusion. If her hematocrit is in the high twenties she will need another transfusion in about 7-10 days. If it’s really low, say around 12, they will do another transfusion within 2-3 days. At Lucy’s blood transfusion at 18 weeks her hematocrit was only a 6 and they didn’t even check her again for a whole week after the transfusion. This makes me so sad, knowing she wasn’t monitored like she should have been. By the time they saw her again, it was too late. Anyway, back to tomorrow. After they check Nora’s blood they will give her a paralytic and a medication to sedate her. The doctors need to temporarily paralyze her so that she isn’t moving around during the procedure, possibly kicking the needle out or getting injured. As well as paralyzing her they also sedate her because supposedly, babies in the womb who are paralyzed without sedation REALIZE that they are paralyzed and start to freak out because they know something is wrong and they should be able to move. How amazing is that? A tiny one pound baby has enough awareness in the womb to get anxiety when she can’t move her little arms and legs. That is incredible. So, after she is paralyzed and sedated they will use the needle to put just the right amount of packed red blood cells into her umbilical vein. The doctor will pull the needle out and go in a second time and put more red blood cells into her abdomen. The blood in the vein relieves her anemia immediately and the blood in the belly slowly seeps into her blood stream over time, giving her fresh blood days after the procedure is over. After that, the doctor will draw more of Nora’s blood to test her hematocrit again to see if the transfusion worked and her final blood count is higher. The whole procedure should take about an hour. After it’s finished they’ll take me to the recovery room and monitor Nora and me closely until Nora starts moving again, then they will send me home. I’ll be on bed rest for a day or two. Dr. Moise will do another scan the day following the transfusion to make sure Nora looks healthy and then we do it again in about a week. After that transfusion they will wait two weeks until the next one and 4-5 weeks after that one. Dr. Moise thinks Nora will need 4-5 blood transfusions before delivery.
One thing I am REALLY excited about is that I won’t be doing IVIG anymore since it isn’t really helpful after starting IUTs (transfusions.) This means they will be taking my port out tomorrow right after the transfusion is finished and while I’m still in the OR. I am SO excited to have that thing out and be able to shower again! Here’s one last picture of the port:
The reason IVIG isn’t helpful anymore is because Dr. Moise will replace all of Nora’s kell positive blood with kell negative blood (temporarily changing her blood type!) After the kell positive blood is gone, there is nothing for my antibodies to attack, therefore we don’t need to try to suppress them anymore. The first two transfusions replace her blood and then the subsequent transfusions are needed because Nora will grow bigger and bigger, therefore needing more blood. Dr. Moise knows exactly how many transfusions she needs in order to keep up with her growth as the weeks pass.
Sorry about all of the medical information for those of you who are uninterested (it is pretty boring reading material.) Please pray for baby Nora and for the doctors tomorrow. Pray that there are no complications and that Nora gets just the right amount of blood she needs to overcome the anemia. Also, I would love for you to pray for Josh and me since this is terrifying, especially after losing Lucy a week after her blood transfusion. Josh has to teach classes all day tomorrow while worrying about his baby girl and I have to go through the whole thing without him by my side. I really wish he was here. I know God will be with us, holding us in His mighty hand, filling me with strength and peace. Thank you all for your support and your prayers.
It has been six years since Lucy’s heart stopped. I have lived 2,191 days without my daughter. 2,191 times my eyelids flickered opened and I awoke to a world without Lucy in it. And I got up out of bed and I made it through the day. Over two thousand times. In all of those days I have missed small and intimate moments with her, mundane moments that we parents often take for granted, and important milestones. All the baby snuggles, reaching for her hand in a parking lot, painting tiny toenails and washing her hair in the bath. The first words and the Halloween costumes and teaching her how to read. Birthdays and Christmases and bedtime stories. I even miss potty training and disciplining her and taking her to the pediatrician for her vaccinations. The overwhelming weight of all the things we have missed while living our lives without Lucy seems like it’s too much to bear sometimes. At the moment my grief is so fresh and raw, it seems impossible that it has been six whole years since she died. The persistence of my grief is a testament to the depth of my love for her. Oh how I ache for my little girl. But the grief should not come as a surprise. Just as it is good and right to enjoy and celebrate the children we have with us, it is good and right to miss and mourn the children that wait for us in heaven. Liam just turned ten years old yesterday and we celebrated his life. We gave him presents and made his favorite breakfast and told him we loved him. We didn’t say, “Oh, that was ten years ago. I already celebrated him back then and I’ve moved on by now.” We acknowledge the joy of his life and the gift of having him here with us. Conversely, we grieve the absence of our precious daughter, Lucy, and we acknowledge the depth of our pain and how much we miss her.
In a sermon preached only days after the 9/11 attacks in New York City, Timothy Keller said that there are two mistakes people can make in the face of tragedy, suffering and death and they are warned against in 1 Thessalonians. The first mistake is to try to avoid grief and weeping. The second mistake is to grieve as those who have no hope. He says:
“The Bible indicates that the love and hope of God and the love and hope that comes from one another has to be rubbed into our grief, the way you have to rub salt into meat in warm climates where it will go bad. Your grief is either going to make you bleaker and weaker or it could make you far more wise and good and tender, depending on what you rub into it, what you put in. And that’s what we’re here to do. We’re here not just to weep but to rub into our weeping, hope and love.”
So today I acknowledge my profound grief for my daughter, Lucy Dair. Her name means light, and when her heart stopped, a light went out inside me that will not be lit again until I am in heaven. I feel her absence every minute of every day. We all love you so much Lucy.
Original photo by Wright Media, edited with permission by Siobhan Fisher Photography ❤
But I do not grieve as one who has no hope. I know that, just as He promised, God will redeem every one of the 2,191 days we have missed with Lucy, and He will redeem all of the missed days to come. Today, as always, I will continue to rub hope and love deep into my wounds. Lucy left me with many gifts that I have slowly been unwrapping over these past six years since she left. The way I look forward to heaven now is a gift. My ability to appreciate life in a way I never have before is a gift. The way my heart has been softened towards others who are hurting is a gift. Even the suffering itself can be viewed as a gift because it teaches us things no one else can teach us.
Sheryl Sandberg wrote a book called Option B after her husband died unexpectedly and she was left to raise her two young children on her own. In one section of her book she writes about Joe Kasper, a man who lost his son but then found healing when he realized that his actions could be a part of his son’s legacy.
“While studying for his Master’s degree, Joe created a therapeutic process called ‘co-destiny,’ which encourages bereaved parents to view their child’s life in a larger framework so that death does not become the end of the story. Parents who seek purpose and meaning from their tragedies can go on to do good, which then becomes part of their child’s impact on the world. As Joe explained, ‘I realized that my destiny was to live my life in a way that would make my son proud. The awareness that I could add goodness to my son’s life by doing good in his name motivates me to this day.’ It’s not surprising that so many trauma survivors end up helping others overcome the adversity that they have faced themselves. ‘There is nothing more gratifying than helping someone else escape this quagmire of despair,’ Joe told us. ‘I know this passion of mine is an area of personal growth related to my trauma. Helping others grow from their trauma reflects back to my son’s life.’ After undergoing a hardship, people have new knowledge to offer those who go through similar experiences. It is a unique source of meaning because it does not just give our lives purpose- it gives our suffering purpose. People help where they’ve been hurt so that their wounds are not in vain.”
I can attest to the healing power of adding goodness to Lucy’s life by doing good in her name. This is part of the rubbing in of love and hope. Very few things in my life are as gratifying as helping other women who are dealing with a high risk pregnancy or the loss of a baby. My trauma has given me unique experiences and insights that I can share with others. I’ve been able to learn the ins and outs of this high risk pregnancy disorder and I now have the tools to help other women advocate for the right medical care during their pregnancies.
I have also been on the receiving end of this hope sharing. When Lucy was stillborn I was in the hospital for two days and two nights. While I was there I encountered many doctors and nurses who were kind but I only remember one woman who was able to comfort me with her words. A nurse told me she had suffered a miscarriage in the past and was devastated by it. She told me about her rainbow baby who had brought her so much healing. “You just have to try again, honey. You just have to get back up on that horse and try again.” Obviously, her words weren’t perfect because I couldn’t just “get back up on that horse and try again” like she had said since my next baby would also face anti-Kell antibodies like Lucy. But her act of sharing even just that tiny glimpse into her own pain, and her acknowledgement of my desperate desire for a living baby gave me hope. It encouraged me to hear about someone else losing a baby and then finding hope and trying again afterwards. Since then many, many people have reached out and shared their own stories of suffering with me and those are the people who have made a huge impact on my life. Our Support for Antibodies in Pregnancy group on Facebook is full of women who have been through traumatic losses and high risk pregnancies and they use their suffering to lift other women up. We share what we have learned from our own pregnancies and we help others protect their babies. In fact, if I had not found the women in the group I don’t think my own children, Nora and Callum, would be alive today. I was not a part of the group when I was pregnant with Lucy so I had to figure out that pregnancy on my own. What a difference these women made in my life by sharing what they gained from their trauma.
My friend, Melanie DeSimone, lost her son, Dominic, several years ago and since then she has started a blog, The Life I Didn’t Choose, and a Facebook group for bereaved parents, Heartache and Hope: Life After Losing a Child. She has used her suffering to encourage and support other families going through similar losses. The wisdom and empathy that Melanie shares with thousands of people daily is only available to her because of Dominic, and because Melanie has chosen to rub love and hope into her grief.
For those of you who have suffered a loss or gone through a traumatic event or faced discrimination, what do you know now that you didn’t know before your crisis? How has your perspective changed? These are your gifts to share with the world, to bring purpose to your suffering and to help others who are facing a similar tragedy. And I can tell you from personal experience that when you reach out and use these gifts to help others, it will end up benefiting you more than you can imagine.
Lucy’s life and legacy live on through the families who have been changed by her story. Here are some of the gorgeous babies from the past year or two who have been helped because of Lucy’s story. Their parents are some of the bravest people I know. I cannot describe how much joy and fulfillment these babies bring to my life and I feel honored to be a part of their stories. Happy birthday, Lucy. Some of these babies would not be here if it weren’t for you. I hope you can see what a difference your life has made in the world. I am so proud to be your Mommy.
Maggie
Bay
Oliver
Jake
Hayes
Cameron
Alex Ray
Francesca and Vincenza aka Frankie and Vinnie
Mila
Cole
Nolan
Harris
Paxon, Madon and baby sibling on the way
Brianna Anne
Kolt
Eliza
Rainbow baby girl Stevens on the way
Piper
Evangeline
Nusayba
Uwais
Rainbow baby girl Stacey
Baby Allen
Meadow Mae
Ezra (baby sibling on the way)
Mattea
Crosby
Anysia
Grace
Emmi
Zylas
Baby Rusch #3
Cameela
Laney Maree
And beautiful Liliana, who, like Lucy, would probably be alive today if she had received the right care.
Liliana
Liliana
As with all of my anti-Kell posts, this one also applies to the other red cell antibodies during pregnancy; anti-D, anti-c, anti-E, anti-FYA, anti-Jka, and so on.
One of the best ways you can protect your baby is to find out exactly how your baby is doing, and one of the best ways to know how your baby is doing is to know exact test results (assuming your MFM is performing the right tests.) Often, doctors do not automatically give out exact test results but give their interpretation of the results instead. “Your baby is doing fine” or “Your results are in the normal range” or “Baby’s numbers have increased a bit this week but we will just keep an eye on him and scan again next week.” With most conditions this is the norm; doctors interpreting the results into understandable, bite sized sentences that patients can grasp easily. But most conditions are more common and doctors encounter patients with those conditions on a regular basis. Our disorder is far more rare and MFMs encounter it less frequently than other pregnancy complications they deal with. Your doctor might not be up to date with the best practices regarding monitoring and treatment for your baby; and yes, even at the best hospital in your state or the best hospital in your country. This is why it is so important to get your specific test results, even if you aren’t exactly sure what to be looking for at first. Numbers are concrete. You can find out specific information with your number in hand. You can use those numbers to help the doctors protect your child. But if you just have your doctor’s opinion, you can’t help advocate for your baby or make sure you are getting the correct treatment.
Sometimes it is awkward to ask for the exact number after your doctor has concluded, “Everything looks great!” or “The numbers are a bit elevated but baby should be ok for now.” Some doctors might take it as a challenge, an irritation in their busy day or as a simple question that they are happy to answer for you. Some doctors like it when their patients want to be educated and involved in their care decisions. Regardless of how your doctor responds to your inquiries, those are YOUR numbers. They belong to you and your baby and the medical professionals are required to give you what belongs to you if you want it. Don’t feel bad for asking. Think about when your baby is finally born and they put her on the scale and you anxiously wait to see how much your bundle of love weighs. Now imagine the nurse writing the number down on your chart and not mentioning it to you. You ask for baby’s weight and they say, “Oh, it’s in the normal range,” or “It’s a bit higher than average.” Would you be ok with that? No! You want to know how much your baby weighs! We expect to receive those numbers after baby is born, but sometimes we are willing to let these other, far more important numbers go. These numbers can determine whether your baby lives or dies, so GET YOUR NUMBERS and record them in some way (notebook or phone, etc.) Envision yourself standing in front of your baby ready to fight the antibodies that threaten your child. These numbers are the weapons in your hand, ready to defend and protect. Here is a list of the most important numbers you need to record during your alloimmunized pregnancy:
Antibody Titer: Your antibody titer gives you an idea of the amount of antibodies present in your blood. The monitoring and treatment you receive is often based on your antibody titer, and these ultrasounds and treatments are very time sensitive (my daughter might be alive if we had done the scans and treatments in time.) As soon as you find out you’ve had a positive antibody screen ask your doctor for your antibody titer and write it down, or ask for access to your medical records so you can look for it yourself.
PSV or MoM Number: This is probably the very most important number you will get during your pregnancy because it shows if and to what extent your baby is being affected by your antibodies. This number is far more important than your titer even. At every MCA scan your doctor is looking at the PSV (peak systolic velocity) number and it will show on the screen when they are doing the scan. You can look on the screen and try to find it or ask for the number. You use the PSV number and your exact gestation to determine baby’s MoM (multiples of median) which shows if baby is anemic or not. An MoM of 1.5 or over shows that baby needs an intrauterine blood transfusion. I use this website to calculate my MoM https://medicinafetalbarcelona.org/calc/ Click on Anemia then click on Cerebral Doppler, then plug in your gestational age and your MCA PSV number and it will calculate your baby’s MoM. Or you can ask your MFM for baby’s MoM instead of the PSV if you prefer. I kept a notebook with all of Lucy, Nora and Callum’s weekly PSV and MoM numbers so that we could compare them to each other and track the numbers to see if there was an upward trend starting (those often lead to IUTs.)
Beginning and Ending Hematocrit/Hemoglobin: These numbers are only important for the women who need IUTs. The beginning and ending numbers are important because they show how anemic baby is before and after the IUT. It always helped me during the IUT procedure to focus on the numbers, so the doctor would call out the hematocrit once they checked baby’s blood and I tried to remember the number instead of focusing too much on what was happening. The doctor called out the ending hematocrit once they got the blood to baby. If the doctor didn’t call out the numbers, I asked and it always made me feel better. If you prefer not to think about numbers during your IUT, just ask the MFM what the beginning and ending hematocrit/hemoglobin (some doctors prefer to use one or the other) was once you are in recovery for monitoring after the procedure. Knowing how anemic baby was before and after the IUT can help you answer all kinds of questions like- “Did my baby actually need an IUT?” “How long can my baby wait until the next IUT?” “Did my baby get enough/too much blood during the procedure?” “Was my baby anemic enough to cause future problems?”
*Side note- It is important to remember that the MoM does not always correlate with an exact hematocrit in baby, so the doctors can’t know EXACTLY when the best time to transfuse is. The MCA scan gives an idea of how anemic baby is and the 1.5 MoM cutoff is the best tool they have for knowing when to transfuse. Some babies will be more anemic with an MoM of 1.5 than other babies with the same MoM. To give you an idea of how my babies’ MoMs correlated with their hematocrits here are their beginning numbers for their first IUTs:
Lucy- MoM=2.5 Beginning hematocrit=6
Nora- MoM=1.6 Beginning hematocrit=26
Callum- MoM=1.49 Beginning hematocrit=28
Bilirubin: This number is very important after your baby is born. The type of jaundice our babies deal with is different from normal newborn jaundice. Our babies’ bilirubin usually peaks between days 4-6 so make sure they continue checking bilirubin until baby is past the peak days. Hemolytic jaundice often has to be treated more aggressively than normal newborn jaundice so you have to make sure they are tracking baby’s bilirubin closely and treating it appropriately. It is very common for our babies to be discharged too early while bilirubin is in the “safe” zone but still rising and then the babies have to be brought back and readmitted with high bilirubin levels later. High bilirubin can sometimes cause permanent brain damage, but it is completely preventable, so these numbers are very important. Also be sure to ask how old baby was at the time of the blood draw since that affects treatment levels. I think Callum’s bilirubin level at birth was 5, which would not be a big deal if he was a couple days old, but right at birth that is considered a high number. So get the bilirubin number and how many hours old baby was at the time of the blood draw. This is a good tool to use to find out if your baby’s bilirubin is high enough to need treatment: https://peditools.org/bili/
Hematocrit/Hemoglobin: These numbers are very important after baby is born. These numbers tell you if your baby is anemic and whether baby needs a blood transfusion or not. Transfusion levels vary depending on your specific circumstance so the Support for Antibodies in Pregnancy group is a great place to ask questions about whether or not your baby might need a transfusion. You can also email me if you have questions about this. Of course, we cannot make medical decisions for you but we can share our insights and experiences and you can combine that information with your doctor’s suggestions. When Callum was in the NICU after his first post birth transfusion the doctors wanted to let him drop below a hematocrit of 25 before transfusing. That isn’t super low, but I felt uneasy about waiting too long to transfuse since he was dealing with so many other preemie issues on top of the anemia. He got to 26 and was having more oxygen desats and heart decels and wasn’t feeding as well as he had been. I had a suspicion that if we handled the anemia the other issues might improve as well. I spoke to his neonatologist about this and said that I felt strongly about going ahead with the transfusion. She heard me and agreed to let them transfuse even though he hadn’t dropped below 25. Callum improved so much after his blood transfusion. No more oxygen desats or heart decels, his feeding improved rapidly and he was discharged from the NICU two days later. Make sure that your baby’s hematocrit or hemoglobin is followed after discharge from the hospital. Delayed onset anemia is normal for our babies since our antibodies linger in their bloodstream and can continue to destroy their red blood cells for weeks after birth. One of my friends lost her beautiful daughter because none of her doctors followed up with blood work after her healthy baby was discharged from the hospital. By the time they caught the delayed onset anemia weeks later, it was too late. Dr. Moise did not allow Nora to be discharged from the hospital after birth until we had an appointment set up with a pediatric hematologist the following week, even though her numbers were perfect and she wasn’t anemic at all at birth. With both Callum and Nora we had weekly blood draws to check hematocrit and hemoglobin and both babies needed transfusions a little over a month after birth.
Ferritin: Most of you will not have to worry about this number at all, but it can be very important if your doctor wants to give baby iron supplements after birth. If your baby had IUTs or was Coombs positive after birth, do not allow the doctors to give baby an iron supplement unless they have checked baby’s ferritin levels first. The ferritin levels show how much iron the body is storing. Doctors often mistakenly equate hemolytic anemia with iron deficiency anemia and want to treat babies with extra iron. When a baby is given a blood transfusion, in utero or after birth, they are given adult donor blood which has adult level iron content. This means our babies are usually overloaded with iron so adding more iron can be dangerous. Since our babies aren’t anemic from low iron (they are anemic because the antibodies have been destroying their red blood cells) adding more iron won’t help their anemia at all. When Callum was in the NICU, after four blood transfusions (3 in utero, 1 post birth) his neonatologist wanted to give him an iron supplement. I told him I would only allow it if they checked his ferritin levels first since he didn’t have iron deficiency anemia. They agreed to check his levels and they were 1,216! The normal range for a baby his age was 25-250. We had to consult a hematologist and do some liver function tests and even discussed possibly doing a liver biopsy to check for liver damage. I’m so glad we didn’t give him MORE iron, adding to his extremely high levels. So, if you have a Coombs positive baby (who might need a blood transfusion in the near future) or have a baby who has had a transfusion, only allow the doctors to give an iron supplement if they have checked the ferritin and baby has low levels.
Remember how useful these numbers can be in your fight to protect your baby from your antibodies. If you get your numbers and then realize that you aren’t sure what to do with them, feel free to email me with any questions you have, or come join our Support for Antibodies in Pregnancy Facebook group for access to about a thousand other women who have been or are going through the same thing.
Last year at this time my newborn Callum was in the NICU and I was staying at the Ronald McDonald House with two year old Nora and my Mom (most of the time.) Since Callum’s first birthday I have been surprised and kind of annoyed by the waves of emotion I’ve been experiencing. The days he spent in the NICU replay vividly in my mind. That night when Josh had to drive Liam and Asher back to Tuscaloosa and I was left alone in the hospital recovering from my c-section and I hobbled down to the NICU at 2 am because I missed my baby so much. I couldn’t hold him yet, I couldn’t breastfeed him or have him in my room, but I COULD look at him, so when my thirst for him just could not wait another minute I walked all the way to the NICU without a wheelchair for the first time, alone. When I finally saw him the pride and goodness of my boy filled me up, but the nurse was visibly irritated by my presence. She side eyed me standing there next to his bassinet and I asked if he had taken anything by mouth. I had been waking up every three hours to pump and then getting up to wash all the pump parts and labeling the breast milk and sending it to the NICU, so I was proud of the breast milk that was available for him now. “Yeah, he had formula and did a pretty good job with the bottle.” “Oh, why wasn’t he given breast milk?” I asked. “I just reached in and grabbed whatever was there and it happened to be formula. He’s been crying for the past hour and I just got him to sleep. It’s not even feeding time so please don’t touch him. It’s not really time for you to be here.” she said. I was stunned into silence. Right after he was born my nurse had told me I could go down to the NICU and see my baby any time I wanted. But now, the one thing that brought me comfort, being able to physically be present with Callum and see him in the flesh, this nurse was taking it away from me? And he had been screaming for an entire hour without his Mommy. And the milk I had worked so hard to pump for him was left in the cooler. I didn’t say anything and stood there like a little kid who just got in trouble for coloring on the walls. Post pregnancy hormones coursed through me and I crumpled into tears and just sobbed, heaving and heaving. It was so embarrassing. Snot and tears trickled down my face and I stood rooted there, body aching from being on my feet for so long but I didn’t know what else to do. The nurse felt awkward and handed me a tissue. I wiped my face and hobbled out the door, down the hall, into the elevator back up to my hospital bed, crying the whole time. I know the nurse probably had a long day and was tired of taking care of somebody else’s screaming baby and wasn’t trying to hurt me, but I felt completely defeated. Now in hindsight I’m irritated with my self for not standing up to that nurse and explaining that if they had certain visiting hours for parents they should have told me, and please give him the breast milk I sent for him. Why do I even care? Callum is literally playing right in front of me right now and he is perfectly healthy and he’s with me ALL OF THE TIME. He has no recollection of that incident so why am I wasting my emotional energy on it right now?
I think having a baby in the NICU is hard for any mother but it’s even harder after you have lost a baby. It’s hard to be empty handed after giving birth, AGAIN. At the time I was in survival mode…pump, go visit Callum, drop off milk, breastfeed, go back to be with Nora, take care of Nora, eat, pump, head back to Callum, etc. (there was very little sleeping going on.) But now, in hindsight, I can make a bit more sense of how I felt. For some reason while Cal was in the NICU I felt like my parental rights were waived and the nurses were his parents, calling the shots. I had to be given permission to hold my own baby or to even be there by his side. I had to ask if I could touch him, feed him, hold him, change him. Most nurses were amazing and I was overcome with gratitude for these women who poured so much love into my baby. They even sent a card to our house after we got home with Callum congratulating us and thanking us for choosing them to care for Callum, which was so amazing. But my mind flits past that and settles on the one nurse who, after I had just met with a therapist about how to handle a preemie, broke all the “rules” I had just been taught and roughly picked up my baby, startling him into screams. She moved quickly and suddenly with him and was not gentle. He cried and I just watched because I wasn’t the parent in the NICU. But if my newborn had been in his little bassinet beside me in my hospital room recovering after the birth and a visitor handled my baby that way I would immediately take him out of her arms and not allow her to hold him anymore. The NICU was different, though, and I had to leave my son there all night with that nurse, and I felt sick leaving him there. I couldn’t sleep either because I worried about him. The next morning he was fine and I felt silly for my strong emotions and fears. But now these experiences replay in my head and I grieve again for the days I lost with Callum. I wonder if I should have been more assertive as his mother? Maybe I was too assertive? Since I felt like I wasn’t the parent, it was hard to bond with Callum like I should have in those early days and that is what grieves me the most, I think. I didn’t get to start truly bonding with him until he came home and I was his mother. People asked ME for permission to hold him and I had the choice not to leave him with anyone I felt uneasy about.
I remember how painful it was after Lucy died to hear women complain about how hard the NICU was. I equated the NICU with “live baby” and envied women who got to experience the NICU. In a way I felt like I was one of the lucky ones while Callum was in the NICU which gave me a weird sense that I was not allowed to grieve the losses I was experiencing. They were on such a smaller scale than the losses of the women who gave birth to still babies. But not grieving properly means the grief can fester and erupt later so now, one year later, I am grieving for the things I lost with Callum in his early days. Tomorrow will be one year since he was discharged from the NICU and I’m hoping this weight will lift and I can move on. I am so thankful to have him home now, healthy and thriving, and I revel in the fact that I get to be his Mommy, just me and no one else.
*TRIGGER WARNING* This blog post includes my experiences through three very high risk pregnancies and discusses stillbirth. There are some sections specifically written for the women who have been given a poor or fatal prenatal diagnosis like we were. If you have a less serious high risk diagnosis, I suggest skipping over the “Go there once” and “Prepare” sections.
“So, there’s a problem with your blood work.”
And just like that my world changed forever.
Is there anything more primal than a parent’s fear when they realize their child is in danger? There is no terror quite like it. After two healthy, normal pregnancies I was sent flailing into a terrible new world when I found out at nine weeks that my third pregnancy would be an extremely risky one. My baby’s life was in danger and there was very little I could do to protect my child. Not only that, but I was also told that all of my future pregnancies would be high risk as well. It wasn’t just this baby who was in danger, but all of my future children as well. My lifelong dream of a big family seemed to evaporate in that moment. The fear and anxiety consumed me. It was always at the forefront of my mind. Suddenly the joy and innocence of pregnancy and child birth were gone and instead I was left feeling terrified, vulnerable, and broken. I couldn’t look forward to my due date with anticipation like before. I couldn’t make plans for this baby. When I thought about the coming months, I was flooded with a fear stronger than any I had ever felt in my life.
I am now on the other side of my three high risk pregnancies. As a quick recap, I was diagnosed with anti-Kell antibodies and my body attacked my babies in utero making the pregnancies very dangerous for them. My daughter, Lucy, was stillborn a few days shy of 20 weeks in my first high risk pregnancy. In my second high risk pregnancy after a lot of intervention, my daughter, Nora, was born healthy at 37 weeks 6 days. In my third high risk pregnancy, after lots of intervention like Nora, my son, Callum, was born at 34 weeks and 4 days and spent almost three weeks in the NICU. I have learned a lot from my journey through these pregnancies and would like to share some of the things that helped me survive them. Not only did I survive them, but I learned to find joy; to seek out and appreciate the joy, no matter how minuscule it was, and make it my own in the midst of hardship and fear. I believe you too can not only survive your high risk pregnancy, but find the joy and the beauty in it as well. Since every pregnancy is different, what helped me might not be beneficial to you so feel free to discard any suggestions that don’t feel right for you personally or might not fit your situation. If I could sit with you face to face over a cup of tea or coffee and share my experience with you, this would be my advice:
You’re going to feel what you’re going to feel
There are a lot of suggestions in this blog post but when it comes down to it, most of the time, you are going to feel how you feel. Your emotions are largely out of your control when you are pregnant, and especially when you find yourself stuck in the middle of a high risk pregnancy. Anger, sadness, elation, fear, depression, gratefulness, anxiety, hope, guilt. All normal. Try not to be hard on yourself for feeling how you feel. Emotions are just emotions and they are temporary. Emotions aren’t truth, thank goodness. It’s ok to feel how you feel.
Try not to compare this pregnancy with your previous pregnancies or with others’ pregnancies.
As a mother I have struggled not to compare my children with other children and not to compare myself with other mothers. In the end it only leads to feelings of inadequacy or pride depending on who came out on top as the “better mom” or “better kid.” The same goes for our pregnancies. We cannot expect every child to be exactly the same and we can’t expect every pregnancy to be the same. One of the biggest sources of pain for me was comparing my high risk pregnancies (especially the first one with Lucy) to my previous two normal pregnancies. They were such different experiences that I felt like I couldn’t help but constantly compare them. And when I compared my high risk pregnancy to my “normal” pregnancies it always felt like the high risk pregnancy came up lacking. I also struggled not to compare my difficult pregnancy with the experiences of the women around me who were having normal, easy pregnancies that ended with healthy babies. It wasn’t fair! Why did my baby have to suffer? And why did I have to go through so much agony when they got to live on blissfully enjoying their healthy pregnancies? The jealousy and rage could consume me if I dwelt on it too long or if I saw one of my pregnant friends complaining on Facebook about how hard it was to drink the glucose drink for her diabetes test or how hard it was when her healthy growing baby danced on her bladder at night. What helped me the most was remembering that each baby is unique and so is every pregnancy. Each one of my children is so different and they each have their own quirks, faults, strengths and unique personalities. Each pregnancy also has it’s own difficulties and it’s own beauties. This high risk pregnancy was part of my baby’s unique story and I decided that I was along for the ride, no matter how difficult it might be. Lucy’s story is her life story. Nora’s story is hers, and Callum’s is his. No matter how hard some of the details are, they are theirs and since I am their mom I accept and cherish every one of their unique stories. I don’t want some other lady’s pregnancy because that’s HER baby’s story. This is MY baby’s story and I will own it and appreciate it as their unique story. Protect this perspective as much as possible. For me, this meant unfollowing certain people on social media or staying off social media when I was feeling vulnerable or frustrated. I also did not attend stressful events like baby showers or go near the baby section of stores.
Research, get a second opinion, make a treatment plan.
When people are facing a new medical diagnosis they are often told by well meaning friends and family, “Don’t google it!” in an attempt to protect the person from unnecessary anxiety. But protecting your baby is much more important than protecting your emotions. I actually found that the more I understood about what was going on inside my body and the more I understood about the risks and treatment options, the more confident I felt. Google it and research your condition as much as possible. Educate yourself so that you can be an advocate for your child. You are the parent and you should play a vital role in your child’s medical treatment decisions. If you are facing a serious medical diagnosis, get a second opinion. Then make a treatment plan or course of action plan that you feel confident about. In my first high risk pregnancy I did not feel comfortable with my treatment plan and I didn’t get a second opinion because it would have meant traveling out of state for medical care. We were told that our hospital was exceptional by those around us so we trusted the MFMs’ treatment plan even though we felt uneasy about it. Our daughter died as a result. With my two subsequent pregnancies I spent hours researching, asking questions and educating myself about anti-Kell antibodies and the treatment options. We traveled out of state for the best medical care possible and I had a treatment plan that I felt very confident about. I knew that if we lost our baby, I would have done everything possible to save her and that brought me some level of peace. Both babies survived because they received the correct medical treatment.
Baby’s life over everything
This one is specifically for the women with very high risk pregnancies who don’t know if their baby will survive. I know that I don’t have to remind other moms of the importance of their baby’s life. It is the reason you are reading this blog post, it is at the heart of all you do. But I do just want to remind you not to let things that are temporary or less important prevent you from doing everything possible to save your baby. If I had a list of the things in my life from most important to least important, which of these things would be at the top? Job, finances, keeping regular weekly schedule, personal comfort, MFM’s feelings, older siblings comfort and regular schedule, the opinions of others, your baby’s life. Your baby’s life is at the top of the list. Do not let something that is lower on the list get in the way of doing everything possible to save your baby’s life. Even if you lose your baby in the end, it will be very important to know you did everything you could have to save your child. With my second high risk pregnancy I decided that I could not stay with the MFMs at UAB in Alabama who made mistakes with my previous baby so I drove 11 hours to Houston, Texas to be treated by Dr. Ken Moise. I felt a little irrational when I decided to go that far with my four year old in tow (on his birthday nonetheless!) It was inconvenient, we didn’t have the money (we are still trying to get out of debt three years later.) It was really hard to leave my oldest son, who was in kindergarten at the time and to leave my husband, and it was sad to have to quit my part time job, but when I walked into The Fetal Center for my first appointment I felt a great weight lifted off my chest and I knew my baby was in the best hands possible. It immediately alleviated a lot of the stress I had been carrying around and I felt peace knowing that I was doing everything in my power to save my baby Nora.
Grieving is normal, regardless of outcome.
Many things are lost in a high risk pregnancy and it is normal and appropriate to grieve for these things. Dead dreams, lost innocence, guilt, fear, painful interventions, inability to enjoy the pregnancy and difficulty accepting what is happening are just some of the things a pregnant woman might face during a high risk pregnancy. During all three of my high risk pregnancies I struggled at some point with heavy depression and anxiety. It wasn’t until my third one that I was able to accept the depression as part of the grieving process and I learned not to over analyze it. I knew that it would be temporary, just like the morning sickness, the back pain and the weekly MFM appointments. Let yourself grieve and mourn because you are going through a very real loss, even if you do end up with a healthy baby. The one thing you should not grieve is the loss of your baby because your baby is alive inside you right now. The time to mourn for your lost child is after you have lost your child, if that ever happens. Try not to mourn what isn’t lost yet.
Take lots of pictures
When I was pregnant with Lucy I was so terrified and often felt hopeless, so I purposefully did not take pictures of my growing baby bump. I thought it would protect me from more grief in the end if we lost her. I was wrong. After she died I desperately wished I had more pictures of my Lucy belly, since those were some of the only pictures I had of her while her heart was still beating. When I was pregnant with Nora I made sure to take lots of pictures and I posted them often on social media because I wanted to celebrate every week I got with her. I wanted to document her life and find joy in my growing belly and taking pictures was an exercise in hope for me. I knew that I would cherish the pictures whether she survived or not.
Go there, ONCE
The fear of losing my baby consumed me when I found out my baby could be in danger. There was a constant feeling of dread that weighed me down, like a heavy blanket. Over and over again I wondered what the future would look like. Would my baby survive? Would I survive if I lost my baby? What would I tell my older kids? Subconsciously I would fast forward and live out the worst case scenario in my head, over and over again. This is not healthy and it is not helpful to anyone, including your baby. I decided to go there in my mind, ONCE, and try to make any preparations needed just in case my worst fears came true. Then, I did not go there again. If I felt my mind slipping and I started imagining the worst, I would purposefully stop my thoughts and remind myself that I had already thought through that scenario and prepared for it as much as possible. There was no need to go there again. As a side note, I wasn’t always able to control my thoughts but I tried my best.
Prepare
As I just mentioned, it helped me to feel as prepared as possible for the worst, just in case it happened. I learned with Lucy, that no amount of bracing myself emotionally or trying not to get attached or not allowing myself to hope, could prepare me for the loss of my child. None of it helped ease my grief in the end. But there are some practical things that I wish I had done ahead of time that would have helped a little bit. When I was pregnant with my baby Nora the doctors gave her a 0% chance of surviving the pregnancy, so I felt that a stillbirth was imminent. I had her diaper bag already, since we had bought it for our baby Scarlet, but never used it in the end because the adoption fell through. I removed all of the cute things we had for Scarlet from the bag and packed the bag with tiny preemie hats, little bows and headbands, a couple of cute preemie outfits and a beautiful, soft pink blanket that I bought just for Nora. All of these things could have been used if Nora had been stillborn. The hats, bows, tiny outfits and blanket would have been used for pictures and then saved as precious momentos of our daughter. I purposefully did not pack pacifiers, diaper cream or other things needed for a living baby because I did not want to face those emotional triggers if we lost our daughter. We also picked a name out as soon as possible since we truly had no idea when we would need to name our daughter; 16 weeks? 20 weeks? 30 weeks? Having name ideas ready helped me have one less thing to worry about. We also were very honest with our two sons about everything throughout the pregnancy, which is a personal decision that might not be right for your family. For us, we knew it was best to tell the boys (3 and 5 at the time) at the very beginning of my pregnancy with Nora that Mommy was pregnant but we did not know if the baby would come live with us in our house, or go live in heaven with Lucy. We didn’t have the option of not telling them about the pregnancy because I had a permacath placed and two very obvious tubes coming out of my chest and we would be relocating for the pregnancy so it was impossible to hide. We told them that the baby would get sick in Mommy’s tummy and need medical help and we could pray that she would survive. But God was in control and we could always, always trust Him. They understood and handled everything better than expected, as children often do. Once I had the diaper bag packed, the name picked out and the boys informed, I felt as prepared as possible for the worst. Then I made an effort not to allow myself to go there again in my mind. I could remind myself that everything was ready in case we lost her and I put the idea of my baby dying far up on the shelf in the back of my mind, in a box, padlocked and shut away. I knew it was there, but I chose, day after day not to focus on it.
HOPE.
This one turned out to be one of the hardest for me, especially after losing Lucy during my first high risk pregnancy. We were given no hope with our baby Nora once we discovered that she had Kell positive blood and would be attacked in utero by my antibodies. The doctors said she would not survive. But I think hope is crucial to surviving and finding joy during a high risk pregnancy, no matter the odds. I learned with Lucy that whether you have false hope or you “prepare” yourself emotionally for the loss of your baby, if you do end up losing your baby the grief is still the same. Deciding not to have hope during your high risk pregnancy will not shield you from the pain of losing your child if your baby doesn’t make it. But hope during your pregnancy is life giving and I like to think that your baby feels that hope running through your veins into her little body. Yes we are afraid and we worry about our babies and we stress about the details of the disorder or we dread the possibilities, and maybe it isn’t possible to feel hopeful at the moment, but we can at least leave room in our hearts for hope. Even if it’s just a tiny space, leave some room for hope. One ounce of hope is more powerful than 10 tons of fear. You never know what miracles might happen. These are what my babies look like today, the ones who were given no hope of surviving, the ones we were told to terminate:
Focus on the next milestone
I quickly learned that if I looked ahead to my due date or afterwards, it only stressed me out because it felt like I was pulling down that padlocked box I had put up high on a shelf in the back of my mind. Instead, I focused on the next milestone and prayed about making it that far. Seeing a heartbeat on the early ultrasound, getting through the surgical placement of my port and permacath, making it to the second trimester, first MCA scan, getting far enough along for baby to have an IUT if necessary, the next MCA scan, the first IUT, making it to viability with a heartbeat (the biggest milestone for me!) 28 weeks, etc. Sometimes the goal was just to make it through the day. This helped me feel a little bit more in control to have small goals that felt attainable.
Get a home doppler.
This is another personal decision that might not be right for you, but it helped me a lot so I am including it. When I first got my home doppler I knew I had to set up some rules for myself before trying to use it because I knew it could end up creating unnecessary anxiety. I decided to only use it once a day at the most and to only try 15 minutes at a time to find baby’s heartbeat. I know I am not a medical professional and have not been trained to use the doppler so it was ok if I didn’t find baby’s heartbeat right away (especially early in the pregnancy.) I gave myself 15 minutes to find the heartbeat and if I didn’t find it within that time I would put my doppler away and do something else. Once I was out of the first trimester I was always able to find the heartbeat within ten minutes. I watched Youtube videos showing how to find baby’s heartbeat with a home doppler and that helped me figure out how to do it. Another rule I had was kick counts over doppler. If baby wasn’t meeting the kick count, but I could still find baby’s heartbeat, I still went in to have baby checked out. Just because I could hear baby’s heartbeat it didn’t mean baby wasn’t in danger. It just meant baby was alive. But the home doppler was a godsend in those irrational moments when I would suddenly feel panic wash over me and I would think, “My baby is dead I know it!” Just hearing the sound of my baby’s heartbeat would calm me down and I would sit listening to the thump, thump, thump until my own heart stopped racing. This was especially needed after having a procedure like the amniocentesis, surgical placement of my port or IUTs when I was very worried about baby’s well being. The purpose of the home doppler is to bring you peace and not to create more anxiety. It is also not meant to be used by you to diagnose your baby. If you start sensing that the doppler seems to be causing more stress than reassurance, sell it or give it away.
Ask your doctor about antidepressants or anti-anxiety medication
Again, this might not be for everyone, but if you are struggling with anxiety or depression during your pregnancy, talk to your doctor about your options regarding medication. I started taking Wellbutrin after Lucy died and my doctor and I agreed that it would be best for me to continue taking it during my pregnancy with Nora since it was such a high stress situation and I struggled with PTSD. The Wellbutrin is considered safe during pregnancy and breast feeding and is non-habit forming so I could stop it at any time in the future if I felt like I wanted to. The Wellbutrin helped keep my anxiety from growing to a point where it was out of my control. It also helped prevent postpartum depression after Nora was born. I took it throughout my year of breastfeeding Nora, through my pregnancy with Callum and during my year of breastfeeding Callum as well.
Find encouraging verses, pray them over your baby.
This is another personal one that might not feel normal for those who are not people of faith. But God is still God and He loves your baby deeply and He is always available to you, whether you pray on a regular basis or you never have in your life. It might flow easily for some and it might feel really awkward and forced for others. I encourage you to give it a try. Prayer is the single thing that helped me survive my high risk pregnancy the most and enabled me to find the joy along the way. There is something so purely peaceful and reassuring about entrusting your child back to God and saying, “Protect my baby. I trust you.” He is the one who has ultimate control over the situation. I found several Bible verses that encouraged me and I read them and prayed them over and over again. They were written in my medical journal that I took with me to every appointment so that when I was in the hospital or the MFM’s office and I opened my journal I would see the verses. I tried to read them at night before going to bed since the middle of the night is often when our fears loom larger than they are in the daylight. I found that just like Peter in the Bible, when he was walking on the water towards Jesus in the midst of a raging storm, if I looked at the giant waves threatening me, I would start to sink. But if I looked to Jesus and focused on His face and His promises, I was saved. Reassured. Lifted up out of the swirling waters that threatened to drown me. These are some of the verses that helped me the most during my high risk pregnancies (I’ve also included a prayer with each verse that you can pray if you aren’t sure what to say):
Zephanaiah 3:17 The Lord your God is in your midst, a mighty one who will save; He will rejoice over you with gladness; He will quiet you by His love; He will exult over you with loud singing.
Prayer: Lord, I know that you are in my midst; you are right here with me at this very moment. Quiet my anxious heart by your love. Fill me with your peace. You are the mighty one who will save. I pray that you save my baby. Strengthen my baby for this journey and let my baby feel your love and peace right now.
Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you. I will uphold you with my righteous right hand.
Prayer: God, you tell me not to fear but I am afraid and I’m worried about the future. Take my fear away and replace it with trust in you. Come and help me, strengthen me and uphold me with your hand. I need your reassurance. Thank you for loving me so much. Thank you for holding me up when I cannot stand on my own.
Isaiah 26:3 You keep him in perfect peace whose mind is stayed on you, because he trusts in you.
Prayer: When the waves are so big I feel I will drown, help me keep my eyes on you, draw me out of that mind space of fear and dread. As I look to you for comfort, overwhelm me with your perfect peace and help me focus my mind on you. Thank you for being bigger than any problem I have to face today.
Romans 15:13 May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope by the power of the Holy Spirit.
Prayer: Lord, you say you are the God of hope and I choose now to trust in you. I am trusting you with the things I cannot control. Nothing is out of your control and I feel the peace of handing it all over to you. Fill me with your hope and peace, OVERFLOW my heart with peace. Not only peace and hope, but also joy. Please help me to find joy today, no matter how impossible it feels at this moment.
Psalm 32:7-9 You are a hiding place for me; you preserve me from trouble; you surround me with shouts of deliverance. Selah. I will instruct you and teach you in the way you should go; I will counsel you with my eye upon you.
Prayer: God, I am scared about what will happen to my baby. I’m so anxious and worried about the future. You are my hiding place. When the storm of fear, worry and sadness swirls all around me I know I can find safety in you. Surround me and my baby with protection and safety. Preserve us from trouble. Give me wisdom along this journey. Help me make the right decisions regarding my baby’s medical care. Give my doctors wisdom and help them make the best decisions for me and my baby. You say you will counsel me with your eye upon me. Thank you for loving me so much that you keep close watch over me and my baby.
Psalm 18:31, 32 For who is God, but the Lord? And who is a rock, except our God? -the God who equipped me with strength and made my way blameless.
Prayer: Oh God, be my rock and my stability. My whole world feels shaky and terrifying right now as I wait and hope for my baby’s safety. You are my strong foundation and because of you, I will not be shaken. Thank you for being so strong and for being my anchor. Equip me with strength to get through today and tomorrow and the rest of this pregnancy. Equip my baby with strength right now, Lord, and wrap my baby in your protection.
Find the Joy
Even in the most terrible situations, even on the hardest days, there are small gifts of joy. Difficulty and sadness do not cancel out goodness and joy. If I have learned anything over the past few years it is that they can exist together. I realized during my high risk pregnancies that if I looked closely enough, nestled there amongst the fear, the pain, the uncertainty and disappointment, there was joy. Sometimes just a tiny drop, but still joy. One of the strongest emotions I dealt with during my pregnancies was dread. I had to endure painful procedures and awful side effects. I found myself dreading the procedures for weeks before they actually took place. I dreaded the surgical placement and removal of my port and permacath. I dreaded my plasmapheresis treatments and especially my weekly IVIG treatments that left me with debilitating migraines, vomiting, terrible muscle pain and weakness. Of all the procedures I experienced, the one I dreaded the most was the intrauterine blood transfusions the doctors had to routinely perform in order to keep my baby alive. One day before one of my IUTs with baby Nora I was so tired of the overwhelming dread that I prayed audaciously for God to not only help me endure the IUT but to actually help me find some enjoyment in it. The next day I purposefully searched for the gifts that I could enjoy, even though I was terrified for my baby and not looking forward to a needle being pushed through my body. “Ok, what can I appreciate about this?” I thought as I put on the thin hospital gown and waited for the nurse to come insert my IV. Well, there weren’t any little kids around who needed something from me. I could be alone (something I often coveted while at home on those overwhelmingly busy days) and I could nap if I wanted. As the day progressed I glimpsed little gifts from God, gifts that were always there but I hadn’t noticed them before. When the nurses lifted me and placed me on the operating table in the freezing operating room, I savored the heavy, warm blankets they draped over me. The warm air that blew under the blankets at the foot of the operating table felt amazing. When Nora’s ending hematocrit was called out to me after they got the blood to her I thanked God for the miracle of the IUT, that these doctors could fill my baby up with fresh, healthy blood even while she remained in utero. The sedation they gave me through my IV calmed my nerves and I appreciated it as I drifted off to take a much needed nap in the recovery room after the procedure was done. I awoke to the sound of my baby’s strong heartbeat thump thumping on the monitor and I thanked God for the best gift- a baby with a beating heart still inside me. Ever since that day when I dread something that I have to endure I pray and ask God to help me find some enjoyment in the experience and He always does. I also realized the one of the best ways to guarantee joy is to be thankful.
During my last pregnancy with my baby Callum I had to travel to Atlanta for my weekly (sometimes twice weekly) appointments which ended up being about 8 hours of driving in a day. It was exhausting and difficult to find childcare for my three kids during these appointments, not to mention all of the other medical procedures. Near the beginning of the pregnancy I wilted as I thought about making the trip week after week throughout my entire pregnancy. How could I do it? I often had to wake up at 3 or 4 am to get to my appointment on time (Atlanta was in a different time zone which didn’t help.) But I prayed and asked God to help me enjoy it somehow and I thanked Him for the hours I got to spend in my car. I decided to use the hours for things I couldn’t do when I was home with my one year old Nora and her big brothers. I prayed without interruption. I listened to podcasts and books on cd and 90s gangsta rap once I got close enough to Atlanta. I packed delicious food for the drive and enjoyed eating in peace (poor Dr. Trevett always wondered why Callum was so active during the ultrasounds and I’m pretty sure it had something to do with the four hours of eating I did leading up to the ultrasound.) I memorized verses and called and talked to friends. I started looking forward to my long drives and I realized that they refreshed me in a way. Once, I almost had to pull over on the side of the interstate because I was laughing so hard listening to David Sedaris’ Me Talk Pretty One Day (strongly recommend!) Tears of laughter streamed down my face, blurring my view of the road, and I realized that my heart was full of joy- right there in a dark and scary place in my life. Belly laughs right there amidst the back pain, headache and nausea while I drove to the ultrasound that would show whether my son was thriving or not. One of my favorite verses is Psalm 4:7 “You have put more joy in my heart than they have when their grain and wine abound.” My personal paraphrase of this verse for my high risk pregnancy was, “You have put more joy in my heart than they have when their pregnancies progress without any problems.” My true source of joy is God, not my circumstances, and nothing can take Him away from me. He can give me more joy in the middle of my high risk pregnancy than those who have easy circumstances. Ask God to give you joy right where you are. Look for the small pockets of joy and you will find them.
Distract Yourself
Once you have done all of the hard work of researching and making a solid treatment plan, working through your emotions and preparing for the future, the best thing you can do is distract yourself. You’ve done everything in your power to keep your baby safe and now you just have to wait without going crazy. Find ways to keep your mind busy and be kind to yourself…family outings, books, Netflix, podcasts, music, shopping, whatever it takes to help pass time. I listened to a daily podcast called Brant and Sherri podcast which was really silly but uplifting and it always helped me when I was feeling very anxious. I also listened to Podcasts during my IVIG treatments and encouraging songs helped too. I tried not to leave any empty space of quiet and inactivity because it was then that my mind would start spiraling.
You are equipped.
I firmly believe that if you are pregnant, you are already a parent. You don’t become a parent the day your child is born. You become a parent when you discover that your child is growing inside you and that is when you start making important decisions for your child. You make medical decisions regarding your prenatal care. You make decisions about what you will and won’t eat in order to keep your baby safe. You make decisions about genetic testing, birth plan, which pediatrician to use, etc. Not only are you a parent already, but I believe that God designed your specific baby for you and He has equipped you to be that child’s parent. He will give you the wisdom, the strength and the love you need to get through this pregnancy because that is what you need to do as this baby’s parent. Every parent is going to struggle in different ways along their parenting journey with each of their children, whether it’s during pregnancy, during the toddler years, teenage years or when their children are adults. Each one of my children needs certain things from me as their mother and many times it requires a dying to self on my part. Awkward confrontations with fellow parents, losing sleep during infant years, hours spent in the pediatrician’s office or staying up late waiting for your teenager to come home. Liam, Asher, Lucy, Nora and Callum have all needed me to parent them in certain ways. Actually, writing this blog post is one of the things I feel I need to do to “parent” Lucy the best way I know how. All of the stress, the agony and the pain of your high risk pregnancy? This is what this child needs from you as their mother. This is your sacrifice for your baby and you are equipped to do these things for your child.
I applaud you if you’ve made it all the way through this long blog post! To wrap things up, I want you to know that YOU CAN DO THIS. I have experienced outcomes on the worst and the best ends of the spectrum when it comes to high risk pregnancies. One pregnancy ended with the death of my child and two of my high risk pregnancies ended with healthy babies. Throughout these experiences God was faithful and He gave me what I needed at the time to get through it. I was not consumed and you will not be either. You are going to get through this.
Lamentations 3:22, 23 Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; great is your faithfulness.
Every morning when you wake up God has new mercies waiting for you. That includes today, right now. And the best thing is that He has gone ahead of you in this day and in this pregnancy. He is there in the future waiting for you, ready to take care of you. None of this is out of His control. He will never leave you or your baby.
Deuteronomy 31:8 The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.
It is hard to believe that my daughter would be turning five this year if she had been born alive. How did I survive five whole years with this ache inside my chest? I wonder who she would be today. Would she be reading super early like her brothers or would she show no interest in letters like her sister? Would she be doing gymnastics like I was at five? Would she have curly hair like Nora? Would Lucy be stubborn and independent like I was as a kid? Or would she be a rule follower like her Daddy? Would she be a tomboy or would she prefer Barbies? I wonder what her voice sounds like. I wonder who her little friends would be. Oh I miss my baby so much.
I’ve been telling Nora about her big sister lately and she accepts it all as completely normal, like everyone has a sister in heaven. The other day I got my Lucy box down and let Nora look through it. She loved seeing her sister’s pillow, dress, hat, blanket, pictures and even the many cards we have saved from our friends and family.
I know that right now Nora doesn’t really understand what it means to lose a sister, but one day when she is older she will grieve the loss of that special relationship. There is still so much heartache to come.
Over the past couple of weeks I’ve been reading back in my journal from the days leading up to Lucy’s death. I can tell from the buoyancy of my writing that I was a different person then. Cheerful and optimistic. Sure that God would save her if I had enough faith. Then at the end of my 17th week of pregnancy (or possibly 18th week since they changed her due date a couple times) I wrote:
My baby might die tomorrow. She has to have an intrauterine blood transfusion at 17 weeks 6 days. I sobbed in the shower tonight crying out to God for her life. “I want to keep her! I want to keep her!” I cried over and over again. God said, “Whatever happens, you have her for eternity. You have her for eternity. Trust me.” And these thoughts have calmed my spirit and given me peace:
*I have her for eternity.
*I will give her life for God’s glory if He asks.
*She is HIS anyway.
*Abraham gave his son to God. God gave His Son for us. I will hold my daughter’s life with an open hand.
*My life’s purpose is to glorify God, not to keep my daughter.
*He will sustain me.
*I will be strong and courageous.
I remember how desperately I cried out to God that night, begging Him to let me keep Lucy. I think I knew then that God was not going to save her. Even though she survived the IUT the following day, she died eight days later while we watched on ultrasound. But that night when I begged for her life I sensed God asking me to place her in his arms. I look at those truths I wrote down five years ago and they give me courage to continue trusting God with this great loss. They give me courage to face the future without her. All of the days to come, without my sweet girl. I can do this, no matter how much I hate it. If I could be brave enough then to give my girl back to God, I can be brave today too. Because the truth is, it still takes an incredible amount of might to live each day without my child. It takes courage and grit and forgiveness and a whole lot of energy.
Three days before Lucy died I wrote this quote down by Charles Spurgeon:
Don’t you know that day dawns after night, showers displace drought, and spring and summer follow winter? Then, have hope! Hope forever, for God will not fail you.
Hope forever. As the days and the weeks and the years pass, more and more light slowly emerges. The dawn after our night. Today I can feel joy and contentment and I can sing again and I laugh freely most of the time. I go days and sometimes weeks without crying. None of these things seemed possible five years ago when I watched my baby’s heart stop and my world splintered. But God has been true to His word. When He promised me five years ago on that rainy, dreary day in that horrible hospital room, “I WILL REDEEM IT” He was telling the truth. He has been persistent in His quest to redeem the many things that died on February 8th, 2013 along with Lucy. And one day when I arrive in heaven, He will redeem the loss of my daughter and all of the missed moments with her here on earth. Yes, I will hope forever, for God will not fail me.
Three days after Lucy died when I was at one of the lowest points of my life I wrote this simple journal entry:
I TRUST HIM.
I trust you, Lord. Show me your goodness. Show me your hope. Show me what you are going to do with this sacrifice of pain and loss. Make her little life worth something….something so beautiful.
I TRUST YOU.
And now I get to show you the goodness and the hope, the beautiful thing God is doing with Lucy’s life. Because of my experience with her and because of this blog, I get to connect with parents from all over the world who are dealing with a sensitized pregnancy and help them advocate for the right care. You know, I invest in each one of my children’s lives daily; Liam, Asher, Nora and Callum. I don’t get to invest in Lucy’s life, so instead, I invest the time I would be spending with Lucy in these babies and their parents. My Facebook feed is full of pregnant bellies and ultrasound updates and newborn babies and pregnancy announcements…all the things that used to trigger my PTSD and send me spiraling. Now they are some of my greatest joys in life. Here are some of the beautiful babies who were impacted by Lucy and me over the past year. (There were so many babies that I couldn’t include each one’s story so I just included a couple and then the names and pictures of the rest of them.)
“My Kell baby Nancy, nearly 6 months old. She wouldn’t be here now if it wasn’t for your blog and the invaluable help of the Facebook group. The knowledge I gained from you helped me to ensure she had the best care, if I hadn’t fought so hard for more regular MCA scans she would have been so anaemic we would’ve lost her. I’m eternally grateful. Thinking of you and your precious Lucy xxx ❤️”
“After a shocking loss of our daughter in 2016 I was told I should never get pregnant again because my antibodies would cause another loss. Long story short, I found Bethany’s blog and the Facebook group which gave me hope again for future children. My rainbow baby Cameron was born this past summer and words can not describe how grateful I am for Bethany sharing Lucy’s story. If it wasn’t for her my son would not be here today. ❤️”
Isaiah
Gabriella Grace
Sloan
Alexander
Cole
Emmett
Maxwell Raymond “Bay”
Halle Ann
Nate
Timothy James
Baby M
Olivia
Crosby
Sawyer
Freddy and Max (and baby on the way)
Grace
Sylvie
Baby G
Ava Irene
Benjamin
Baby P
Baby H
Bennett
Oliver
Baby T
Sadie-Mae
Boone
Max
Layla
Callum Joseph Thomas
And for the babies who are not pictured here, but who are just as important as the ones who survived, you are greatly missed and deeply loved. The ones who don’t come home from the hospital in their mamas’ arms, like Nancy Stella and Freya Louise and Connor James and all of the precious babies who were lost, these babies often have a greater impact on my life than the ones who lived. I feel great comfort knowing Lucy has such amazing little friends in heaven with her.
Happy birthday in heaven, Lucy Dair. I ache for you every day. I see all the empty spaces where you should be. Five years closer to having you forever. I love you and I’m so proud to be your mommy.
I have had this blog post mostly written and sitting in my draft folder for months now, waiting to be published. It weighs on me and I think about it often, rewriting certain sentences in my mind, adding and editing mentally while I go about my tasks during the day. Mostly, I want the whole post to be saturated with forgiveness and grace, but also truth. The doctors I write about are real people, and I don’t want to attack their character or publicly shame them for mistakes they made. What if blog posts were written about me every time I made a mistake? What if I had a job where my actions had life or death consequences? That would be so difficult. And these doctors have done some truly wonderful things for me, like the amniocentesis and pushing the insurance company to cover treatments during my pregnancy with Nora (before transferring to Dr. Moise.) But truth is incredibly important and I feel deep in my heart that lives could be at risk if I don’t share the truth. I feel a heavy responsibility to protect families from experiencing what our family has experienced. I have forgiven the doctors at UAB for their mistakes. I forgive them over and over again when my heart breaks yet again for my girl and I forgive them again when I run through the events leading up to her death for the hundredth time. The one person I struggle to forgive the most is myself. As a mother it is my job to protect my children and I feel like I failed Lucy in the worst way, even though I really did try my best at the time to save her. I just didn’t understand the disorder enough back then. I was confused and scared and scrambling around grasping for information about anti-Kell antibodies (which was very hard to find.) I didn’t know the treatment options available or the proper monitoring protocols. I thought I could trust my MFM specialists to know all of these things and I placed my daughter’s life in their hands. There was so much I didn’t know when I was pregnant with Lucy in 2013. But I know now, and I cannot quietly sit by and leave other babies to Lucy’s fate. Hopefully I can spread the word and get the right information out there to protect families in Alabama dealing with alloimmunization and HDFN.
A couple of weeks before I gave birth to Callum, I finally had my follow up appointment with the MFMs at UAB hospital to discuss what happened with Lucy. After Lucy was stillborn, I scheduled a preconception appointment at UAB to discuss everything that happened during the pregnancy and her autopsy results, placenta analysis and blood work results. One of the head MFMs called me a few weeks after Lucy died and said he thought I had had a fetal maternal hemorrhage and that was the reason we lost Lucy, not just the anti-Kell antibodies. He said there was no reason for me to have the follow up appointment and he encouraged me to cancel it. I was ecstatic that my antibodies weren’t necessarily to blame for Lucy’s death (supposedly) and I canceled the appointment like he suggested. This meant that I never got to discuss what happened during my pregnancy with Lucy or go over the decisions that the MFMs made. No one was held accountable. I had no idea if they learned anything from my experience. It haunted me over the years and the questions I had for the doctors just bounced around in my brain that whole time, unanswered.
UAB is good at many things, and even the MFMs at UAB might be great at treating common pregnancy complications. But when it comes to maternal alloimmunization their protocols are out of date, possibly putting unborn babies at risk. They start MCA scans (the special ultrasound that checks baby for anemia) at around 22 weeks even with patients who have critical titers. This was their plan for Lucy, even though my Kell titer was 1,024 (critical titer was 8 at the time.) I asked them many times during my pregnancy to do an MCA scan to make sure Lucy wasn’t anemic. They refused over and over again. It is a non-invasive, quick ultrasound and it is the only noninvasive way to check the baby for anemia. Even while they were doing a level II ultrasound at 16 weeks, spending an hour with the ultrasound wand on my belly, when I asked them to please do the MCA scan to see if she was anemic they wouldn’t do it and they missed the anemia that day because of it. The day after I gave birth to my lifeless daughter, I asked Dr. O if they would change their protocols and start scanning women with critical titers sooner now because they saw what happened to Lucy. He said, “We don’t change protocols just because of one baby.” Naively, I still thought that surely they would have learned to be more cautious when treating other alloimmunized women because of what happened with Lucy. That was one of the only thoughts that gave me comfort after Lucy died. Maybe other babies would be saved because of Lucy. But about a year or two ago I was contacted by another Kell mama in Alabama, and I encouraged and helped her through her pregnancy. To my horror, even though her titer was well over critical, the MFMs at UAB told her she would have her first MCA scan sometime between 20-24 weeks. It was apparent from her experiences with them that they had changed nothing after losing Lucy. After realizing that, I knew I had to meet with them to discuss everything that happened with Lucy and urge them to treat this disorder more seriously. If they had updated their care practices after Lucy died, I would not have felt compelled to have this meeting with them. By the way, women with critical titers are supposed to have their first MCA scan between 16-18 weeks to make sure the fetal anemia is caught in time to treat. Nora had her first MCA scan at 15 weeks and Callum had his first MCA scan at 14 weeks. Fetal anemia is only treatable if it is detected.
So, I met with the head of the MFM department, Dr. D and one of the main MFMs who handled my pregnancy with Lucy (Dr. O) a couple of weeks before giving birth to Callum. I really appreciated them agreeing to this appointment since it had been over four years since Lucy died. I can only imagine how many patients they had treated in the previous four years, so I’m actually surprised that they remembered anything from my pregnancy (and maybe they couldn’t remember everything which is why some responses were so vague?)
I know it must have seemed strange to them that I would want to come in four and a half years after losing my baby to discuss what happened. They were polite and respectful and I know it was probably hard to do that during this conversation. The one thing I appreciate most is that Dr. O referred to my daughter as Lucy. He didn’t call her “the baby” or “fetus” he called her Lucy and that meant the world to me. I wish other people in my life would just call her Lucy and say her name like they say my other children’s names. It was unexpectedly refreshing and I appreciate him doing that for me.
Unfortunately, I left the appointment feeling discouraged, disappointed and depressed, but also more determined than ever to keep fighting for babies like Lucy, Nora and Callum. Where do I even start? The doctors did not take any responsibility for what happened to Lucy. Many of my questions were not answered in the way I hoped they would be; some weren’t answered at all. I was hoping that the doctors had actual medical reasons for the choices they made regarding my treatment. I think that would have given me some peace. For example, when I asked, “Why did you wait a whole week to scan Lucy after the IUT, especially since her hematocrit was 6?” Pause….”Well, that’s just what we do.” Another example, “When I didn’t feel Lucy move again after the IUT and I came into labor and delivery a few days later, why wouldn’t you do an MCA scan to check her for anemia even though I asked over and over again for one? Why was I sent home? She was dying.” They said something about MCA scans possibly being inaccurate after an IUT, but they didn’t know why I was sent home. They just didn’t have an answer. If they had listened when I insisted something wasn’t right and she wasn’t moving, and checked her anemia levels then they possibly could have saved her.
When I asked, “In the past four years since Lucy died, what has UAB done to ensure that this doesn’t happen to another baby?” They couldn’t tell me. I was given a vague response about how what happened to Lucy was very rare and most women don’t have a titer as high as mine. I talked about how when I came back with my second Kell pregnancy, the MFM told me I should just hope that the baby was Kell negative and to come back at 16 weeks for an amniocentesis. I showed them a picture of Nora and said that if I had trusted their expertise and gone with their treatment plan, she would be dead today. They had nothing to say, except, “Well, maybe she would have survived without the plasmapheresis and IVIG? We don’t know for sure.” “But you were willing to take that risk with my daughter’s life, even after seeing what happened with Lucy?” Silence.
Both doctors remained determined to stick with their MCA start time of about 22 weeks for women with critical titers. I tried explaining that a lot of babies would not be alive by 22 weeks if they waited that long before being checked for anemia, but they disagreed. They said there are no specific guidelines set by ACOG saying when doctors HAVE to start MCA scans so they usually go case by case and decide when to scan based on each specific woman and her history. I explained that this is exactly what terrifies me since with my specific case, they saw that I had a Kell titer of 1,024 and decided that the best course of action would be to start scans around 22 weeks. One doctor spoke up, “Well we have learned since treating you that sometimes even in first sensitized pregnancies, babies can be affected earlier than 22 weeks if the titer is very high and the woman has anti-Kell.” So I asked him if a woman came in today with my exact situation, (first sensitized pregnancy, anti-Kell titer of 1,024) what would the treatment plan look like? The doctor said they would not suggest plasmapheresis and IVIG (the treatments that saved Nora and Callum’s lives) but “now, we would suggest starting MCA scans as early as 18-20 weeks.” This is the most ridiculous thing since Lucy died because they caught the anemia too late, even with a scan (that I basically forced them to do) at 17 weeks and 6 days.
I won’t go through all of my specific questions and their answers. I think the most unsettling thing about the whole appointment was how nonchalant they seemed about it all. I tried to convey, somehow, with my inadequate words how important Lucy was to us, and how their choices had impacted our family forever. I told them I would have rather died than have to live without her. I would have gladly taken her place if I had been given the chance. How could I explain how precious my baby girl is to me? I just sobbed. My mom told them that people trust UAB, we trusted UAB with our baby, and they need to take that responsibility seriously. I told them they had so many chances to save Lucy and they let her down over and over again. They said nothing. No apology, no promise to protect other babies, no real change. I’m guessing they decided beforehand not to admit to any wrongdoing during our conversation and they clung to that fiercely.
When I said it seems like UAB tries to do the least amount of monitoring possible, instead of being extra cautious with these little lives, they did not deny it. When I said, “Many women ask me for MFM recommendations in Alabama. Some ask specifically if I could recommend UAB. I always wish that I could recommend UAB but as far as I know, I can’t because I don’t think their babies would be safe here. When they ask me if they should go to UAB for treatment, what should I tell them?” Silence…and a shrug of the shoulders. Right at the end of the appointment when we were getting up to leave, Dr. O did say that Lucy was important to them and she had affected them in some ways. He just couldn’t tell me how they have improved and I haven’t seen any evidence of that. One thing he did agreed to do was scan a woman with a critical titer before 22 weeks if she specifically asked for and insisted on the MCA scan. But how is a woman supposed to know she has to request this type of scan in order for her baby to receive the right monitoring? The MFMs are the ones who should be providing the right care even if a mother doesn’t insist on the specific tests by name. I told them that many hospitals all over the world start MCA scans by 18 weeks for women with critical titers. Dr. O asked which ones but I didn’t have the names of the actual hospitals on hand. He said if I gave him a list of other hospitals and practices that start MCA scans by 18 weeks then he would consider changing their policy. I promised him that I would.
I went in to this appointment giving these MFMs the benefit of the doubt. I was hopeful that maybe I had just projected my grief of losing my daughter onto them and that is why I thought they had given us such inadequate care, but they only confirmed what I had thought. They do treat alloimmunization/HDFN with nonchalance and they are resistant to change, even if it means babies might die.
Here is my warning: If you are pregnant and you live in Alabama and you found out that you have tested positive for anti-Kell antibodies, or anti-D antibodies, anti-c, anti-E, anti-jka, etc. do not trust UAB to protect your baby’s life. From my experience and my observations, I can only conclude that they will not provide adequate monitoring or treatment and your child will be in danger under their care.
From my experience, the best care for women facing alloimmunization can be found outside of the state of Alabama. Dr. Thomas Trevett in Atlanta is amazing and so is Dr. Ken Moise in Houston. Those are my two recommendations if you want phenomenal care for you and your child. It is so worth the drive. I’m sure there are also other MFMs out of state who know how to properly treat alloimmunization/HDFN.
It sounds ridiculously dramatic, but as I left that appointment at UAB, I had the very real sense that I was walking out of a dangerous place, and I wanted to run to get away. I placed my hands on my swollen belly with my healthy kicking baby boy inside and thanked God that my son was safe. I left that appointment in awe of Dr. Trevett and Dr. Moise, wishing I could hug them and express my deep gratitude for them. I think that was the moment that I knew Callum’s middle names would be Joseph, after Dr. Moise and Thomas, after Dr. Trevett. They respect the trust that we put in them to protect our children. They take every step possible to provide the best monitoring and treatment for their patients. They truly care about our babies. I am so glad I left Alabama for Nora and Callum, and I am devastated all over again that I stayed at UAB with my precious Lucy. I just had no idea. What I would give to reverse time and leave the state for better care during my pregnancy with Lucy.
A couple of months after my appointment at UAB, I sent Dr. D and Dr. O a list of 57 different hospitals and medical practices around the world that start MCA scans by 18 weeks, including a real life example of a woman treated at each hospital. I included the patient’s initials, her antibody, her titer and when they performed her first MCA scan. Dr. D replied,
“Thank you for your continued interest and info. We are in the process of rewriting our guidelines and plan to evaluate MCA doppler in the second trimester (16 -18 weeks) in appropriate patients. I’ll let you know our final pathway.”
This felt very promising! I still have not heard back from them, but if they decide to update their protocols I will definitely come back and update this blog post with their improvements. Until then, I strongly urge you to skip UAB hospital if you are dealing with alloimmunization during pregnancy and find an MFM who will treat your pregnancy with caution and expertise. Or, you could have your basic scans done at UAB and have a more experienced MFM (such as Dr. Trevett) on standby to perform any IUTs needed during the pregnancy. With a little urging, the MFMs at UAB will collaborate with other MFMs for your care.
One last thought: When I left my appointment I felt so incredibly defeated. My grief over my daughter’s death just swamped me like a big wave. It felt like she meant nothing to them, like her life was worthless. It gutted me all over again to think that her death was preventable if only I had known then what I know now. And the fact that the people who should have saved her but didn’t, had just denied their role in her death made it hurt even worse. But that morning before my appointment my mom had shared this verse with me-
Lamentations 3:57-59 You came near when I called on you; you said, “Do not fear!” You have taken up my cause, O Lord, you have redeemed my life. You have seen the wrong done to me, O Lord; judge my cause.”
And that verse came to mind as I drove away from UAB hospital. None of this was out of God’s control. UAB might have failed my daughter but God did not. Even though I can’t trust UAB, I can absolutely trust God. And even if my daughter’s worth was lost on those doctors, she was intricately woven together by the Creator of the universe and He treasures her. God desperately loves Lucy even more than I love her and that gives me peace. And the injustice done to Lucy and me? God sees the wrong done to us and He will judge our cause. I cannot force them to see Lucy’s worth or to be accountable for their actions but I can hopefully protect other babies in Alabama from experiencing what I went through.
Isaiah 41:17-20 When the poor and needy seek water, and there is none, and their tongue is parched with thirst, I the Lord will answer them; I the God of Israel will not forsake them. I will open rivers on the bare heights, and fountains in the midst of the valleys. I will make the wilderness a pool of water, and the dry land springs of water. I will put in the wilderness the cedar, the acacia, the myrtle, and the olive. I will set in the desert the cypress, the plane and the pine together, that they may see and know, may consider and understand together, that the hand of the Lord has done this, the Holy One of Israel has created it.
A tree is just a tree unless it grows in a wasteland, then it becomes something quite miraculous; a sign of something greater, someone greater. I believe that every life is a miracle, but sometimes it takes an impossible situation to see the Hand behind it. My wasteland of a womb was supposed to be uninhabitable for human life, but Callum grew and flourished there in the desert. Let us all see and know, let us consider and understand together that the hand of the Lord has done this, the Holy One of Israel has created him.
Well, Callum’s birth story is not what I was expecting at all, but it’s not my birth story is it? It’s his birth story and he definitely made it his own. I was scheduled to have Callum’s fourth and last intrauterine blood transfusion on Wednesday, September 13th. This meant that I had to be at the hospital early on Monday the 11th to have my blood drawn. They always drew my blood a couple days before the IUT to make sure the donor blood matched my antibodies. I left at around 2 am that Monday morning for Atlanta and prayed that I would beat hurricane Irma there. Well, it was a tropical storm by that point but I still did not want to be caught in the storm on the interstate. I barely gave any thought to what I packed, expecting to only be there for three nights at the most. Oh, how I wish I had packed for a birth and for weeks of post partum life, breastfeeding and a long stay in the Ronald McDonald House! At least I grabbed Cal’s diaper bag at the last minute. I got to the hospital that morning and everything felt a bit weird and tense. All the schools were closed because of the storm and Dr. Trevett’s office was closing at 12:00. I was scared that the blood bank would have trouble getting the blood in time if the storm was really bad. I also worried that something would happen and Dr. Trevett wouldn’t be able to make it to the hospital Wednesday morning for the IUT.
Dr. Trevett did an ultrasound to check on Callum and he seemed really subdued compared to his normal active self. His MoM was 1.85 but Dr. Trevett didn’t see any signs of hydrops or distress. MCA scans aren’t usually accurate anyway after the second IUT because the baby’s blood is actually adult donor blood, which flows differently. Dr. Trevett thought Callum would be fine until the transfusion on Wednesday.
I drove to our friends’ house and you guys, there were no cars on the interstate, in Atlanta, in the middle of a weekday. I felt like I was on the Walking Dead. Super eerie. A couple hours after I arrived at their house the power went out and didn’t come back on for days.
I realized then that I hadn’t been feeling Callum move very much. Dr. Trevett had told me earlier that day that if Callum slowed down at all I should come in and they would keep me on the monitors until the IUT. I debated whether I should go in or not. I really didn’t want to get out on the roads in the storm so I checked Cal’s heartbeat with my doppler and it sounded normal. He was moving every now and then, but his movements were way more inconsistent and sluggish than usual. We played board games by candlelight and ate curry that night, which was fun, but I worried and monitored Callum’s movements, going back and forth about whether I should go in or not. It seemed like every time I decided to go in for monitoring, he would kick and I would change my mind. I was also having pretty regular contractions but ignored them since that is normal for me, especially in the third trimester.
That night I hardly slept because I barely felt my boy move. The next day my contractions picked up and I started timing them. They were coming consistently, every six minutes. I still didn’t go in because Callum was moving just enough to keep me from panicking and the contractions never got closer than six minutes apart. Wednesday morning I got up in the pitch black that is 4 am with no electricity and got ready in the darkness. I loaded the car up using my phone flashlight to see and drove to the hospital through the dark streets that were usually lit by street lights. Lots of trees and branches were down and traffic lights were out. The brightly lit hospital was such a relief when I got there. Dr. Trevett was there ready for the transfusion and the blood was being checked in. It was the one and only time I went in for an IUT all by myself. My husband Josh had to work and my mom was keeping Nora and my boys back in Alabama and I had insisted that I would be ok by myself.
I changed into the hospital gown and got hooked up to the monitors and waited for Dr. Trevett to get the OR ready for the procedure. The monitors picked up my contractions right away. I noticed pretty quickly that the baby’s heart rate seemed to be slowing down a lot after my contractions. After one especially big dip, the nurse came rushing in and told me to lay on my side while she paged Dr. Trevett. Her voice sounded urgent and he was there calling for an ultrasound before I knew it. They brought in a portable ultrasound machine and Dr. Trevett scanned Callum looking for signs of distress or hydrops. He said everything looked fine and Callum even passed the biophysical profile almost right away. Dr. Trevett decided to watch the baby’s heart rate for a few minutes and then he would decide what to do. He told me that the baby might have to be delivered if he was showing more signs of distress. I couldn’t believe they were seriously considering delivery. I was only 34 weeks and I was all alone and I just was not prepared to give birth right then. I woke Josh up with a text saying the baby MIGHT possibly be born that day and for him to start packing a bag just in case. Right then I had a hard contraction and as the contraction eased, Callum’s heart rate just plummeted. Dr. Trevett and the nurse both came running in and Dr. Trevett said the baby was coming out. He explained that Callum was definitely showing signs of distress and was telling us that he needed to be born as soon as possible. The IUT procedure does come with risks and it would be really unwise to do an IUT on a baby who was already in distress. If he did, chances were high that Callum would have to be delivered by crash c-section and would not be in good shape. I asked if I could be induced but he said that there was no way Callum would be able to handle the whole labor and delivery process if he wasn’t even handling these contractions well. Induction would also most likely end with a crash c-section. Thankfully my OB, Dr. Howard, was the doctor on call that morning so he was paged. I quickly got one last picture of my pregnant belly. My last bump picture ever.
The anesthesiologist was there before I knew it inserting my epidural. I felt REALLY floaty after that but still needed to send out a few texts to family and my best friend to let them know what was happening. It felt like my fingers were in wet cement and it felt like a tremendous effort to type out each letter. My texts were hilariously short and to the point. My friend Shelly was completely caught off guard by this text I sent her-
I was a little scared and I was really sad that Josh couldn’t be there for the birth (it’s about a four hour drive) but overall I felt a deep sense of peace and excitement going into that operating room. You know that Christmas Eve feeling from childhood when you know you are so close to opening your presents? That intense sense of anticipation and joy…that’s how I have felt right before each of my babies was born, besides Lucy of course. Even though Callum’s birth was very different from the births of my other four children, that magical sense of joy and excitement was still there. One of the nurses took pictures with my phone for me and the c-section was completely painless. I still was in shock that they were delivering my baby right then! They asked if I wanted to watch him being born (blood doesn’t bother me at all) and I said absolutely!
*WARNING- Semi-graphic pictures ahead*
They lowered the curtain between me and the doctors and then they pulled my miracle baby out and he was beautiful!
I was flooded with gratitude and relief to know my baby was alive and out of my body. Even though it was my body that had grown and nourished my son for months, it was also my own body that had worked so hard to destroy him. It felt amazing to finally get him out of there! It took a little while for Callum to cry but he finally did and it felt really unnatural for him to not be on my chest where I could comfort him. I couldn’t even see him.
They worked on him for a few minutes getting him stabilized, and they drew blood to see if he needed a blood transfusion. His apgars were 8 and 9 which was better than I had expected. He had some trouble breathing so they put him on a CPAP machine to help him breathe.
I finally got to see my son and he was perfect. Callum Joseph Thomas, born at 34 weeks 4 days, weighed 6lbs 6oz and was 18.5 inches long.
They whisked him off to the NICU and then I was alone with no baby and no husband, which was really weird. But the peace and the joy of having a living baby still lingered like a warm scent. They took me to the recovery area and that was kind of emotional for me. All the women who were brought to recovery had their babies with them and their husbands were there too. The babies cried and everyone congratulated each other and I laid there all alone in the corner wondering what was happening to my baby. A doctor came to update me on how Callum was doing. His hematocrit was 18, hemoglobin was 6 and cord bilirubin was 5. This meant that he was very anemic and his bilirubin was very high, which is what we were kind of expecting. They immediately put him on phototherapy lights, started an infusion of IVIG and started his blood transfusion. They were able to use the blood they had prepared for the IUT for Callum’s blood transfusion. I’m so glad the doctor took an aggressive approach treating Callum’s HDN (hemolytic disease of the newborn) because it prevented the need for an exchange transfusion and they were able to keep Callum’s bilirubin below brain damage levels.
Three of Dr. Trevett’s nurses came up to see me, which was so sweet and encouraging. They had all worked so hard to help get Callum here alive and I appreciate each one of them so much. They congratulated me and asked how he was doing. It was nice to finally have visitors and to be congratulated on my new baby like the other women in recovery (even if it wasn’t my husband or family members.) I cannot praise Georgia Perinatal Consultants enough for the amazing care they provided during my pregnancy. They went out of their way to make sure I was comfortable and Callum was safe. I often had to schedule ultrasounds last minute duringmy pregnancyand I was only willing to see Dr. Trevett but they always worked me in. If you are pregnant and dealing with isoimmunization and are in Georgia, Alabama or surrounding areas, I strongly recommend using Dr. Trevett at Georgia Perinatal Consultants. Anyway, I was finally taken to my room after that and I got settled in. The nurse told me that my epidural would stay in and I wasn’t allowed to eat or get out of bed for 12 hours post surgery. This meant that I wasn’t allowed to go see my new baby for 12 hours after birth. Of all the 19 days that Callum was in the NICU, those first 12 hours apart from him were by far the hardest emotionally. My whole being ached to hold him and be with him. It vaguely reminded me of when Lucy was born and she was taken away and I was left absolutely empty in that hospital bed. Except this time my heart was full of joy and gratitude and everyone who walked in the room congratulated me. Iknew my separation from Callum was temporary but I still ached for him. One of the nurses brought me a picture of Callum in the NICU and I clung to that picture and looked at it constantly. It was such a comfort to me.
Josh finally arrived and we tried to decide whether he should go see Callum in the NICU or wait until I could see him and both go meet him together. I really wanted to see the look on Josh’s face when he saw his son for the first time, but in the end he just couldn’t wait. He wanted to meet his boy and I wanted him to check on Callum so he went down to the NICU without me and met his son. I will always mourn the fact that I didn’t get to watch Josh meet his son for the first time. He came back to my room gushing about Callum and we marveled that our baby was here alive. I watched the clock and counted down the minutes until I was finally allowed to get out of bed and go see my baby boy. Josh wheeled me down to the NICU late that night and I finally got a closer look at my beautiful little Callum.
Despite being almost 6 weeks early and being hooked up to breathing support and lots of different monitors, IVIG, etc. Callum looked healthy and perfect and I was filled with awe. Over the following days our family members trickled in from Alabama, Tennessee and South Carolina to meet our miracle boy who they all had been praying for for months. Callum had three rounds of IVIG, two days on CPAP, several days of phototherapy lights, and two blood transfusions before being released from the NICU 19 days after he was born.
Dr. Trevett holding his namesake on discharge day
We brought Callum home from the hospital on October 2nd, about three weeks before his due date. He had one more blood transfusion at about six weeks old and was released from hematology at two and a half months. He is perfectly healthy with no lingering effects from the antibodies that tried to kill him in the womb. His brothers and his sister are obsessed with him and he has brought so much joy to our family.
In 2013 after we lost Lucy we went on to lose our two “rainbow babies” in early miscarriages; Jude in July and Pax in October. We named our third lost baby Pax because it meant “peace” and we were trusting God to fill us with peace even in our pain and devastation. I realized when I brought Callum home from Atlanta that in the end, I brought home my two living rainbow babies in July (Nora in 2015) and October (Callum in 2017), the same two months we lost Jude and Pax. I also realized that Callum’s name means “peace” just like Pax. God redeemed so much pain with these two miracle babies I got to bring home from the hospital. As I was finishing up this blog post today I decided to look back in my journal from October of 2013 when I lost my third baby in eight months and I found on that page, the exact verses that I started this blog post with, Isaiah 41:17-20. I praise God for writing such a remarkable story for my life and for using our pain and suffering to create something beautiful. I encourage those of you who are still waiting for your miracle and for your redemption not to give up hope. Keep clinging to hope, keep waiting in faith. God will give you the strength to continue and one day you will have your own story of healing and redemption to share with others.
Isaiah 40:31 Yet those who wait for the Lord will gain new strength; They will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.
Thank you, God, for our Callum Joseph Thomas and for the many amazing people who had a hand in bringing him here safely. He is our tangible reminder of your love and your faithfulness.
Well, we went in for Callum’s seventh blood transfusion on the Friday before Thanksgiving and ended up leaving the hospital without one! When we arrived that morning for the transfusion they inserted his IV and had his blood drawn to check his levels and we were happy to find out that his levels had gone up just a little bit on their own! His hematocrit and hemoglobin the Monday before had been 25.7 and 9.1 and on Friday they were 26.6 and 9.3. It was the first time in his life that he had brought his counts up without a blood transfusion so we were elated.
His hematologist checked his blood for my antibodies and it came back completely negative! I was surprised by how emotional I felt when he told me Callum’s antibody screen was negative. My baby was finally free from my dangerous antibodies for the first time in his life. He can now make his own blood and it won’t ever be destroyed by my antibodies again. It has been a long hard road to get my boy to safety. We did it! They removed his IV and sent us home without a transfusion.
We came back a few days later to check his counts one more time right before Thanksgiving and his numbers had BARELY gone up. His hemoglobin was the same (9.3) but his hematocrit had gone up from 26.6 to 27 so we were cleared to leave the state and visit family in South Carolina for Thanksgiving. We had such a great Thanksgiving with everybody. Callum’s Grandparents got to hold him for the first time and his SC aunts and uncles got to hold him for the first time without monitors and wires attached to him.
Yesterday I drove the hour to Children’s of Alabama for the last time to have Callum’s blood checked by the hematologist. His levels had gone up again on their own! His hematocrit was up from 27 to 28.4 and his hemoglobin was up from 9.3 to 9.6. We were officially released from hematology and we never have to check his counts again!! Thank you God, for this amazing gift.
Driving home from the hospital for the last time with my healthy boy in his car seat was redemptive and beautiful but bittersweet. This is how Lucy’s story should have ended. If she had been given the right monitoring and treatment like Nora and Callum, then I would have driven home one day in 2013 with my healthy baby girl in her car seat and our lives would have been completely different. Our family would be intact, our hearts would not be irreparably broken. Nora would grow up with a sister. Liam and Asher’s childhoods would not be marred by this tragedy. So many shoulds and woulds, and though I rejoiced that we were done, my grief noose tightened just a bit as I drove home with my healthy rainbow boy. But I also think about the other babies who might not be alive if it weren’t for Lucy and this blog. How many other lives would be devastated by tragedy if Lucy had lived? I’m reminded of a song I heard one day while driving to Atlanta for an ultrasound. It’s by Judah and the Lion and the lyrics bring me to tears every time I hear it.
And I’d take it all back, take it all back, take it all back just to have you.
Just typing the words makes me tear up. The words surge all the way down into this deep part of my soul, the part that still desperately wants to save my daughter. I think about the question, “Would I take it all back just to have my baby Lucy?” My mother heart would do anything to have my daughter back, to keep her alive. I would take it all back just to have her. But I also know that I couldn’t possibly make that choice knowing now what her life and her death have meant for other families. I am comforted knowing that God is in control of every little detail of my life and Lucy’s life and I don’t have to make these impossible, hypothetical decisions. But I still feel a deep ache knowing that Lucy’s story could have ended like Callum’s and the treatment that could have saved her was out there all along. Even with such angst in my heart about what happened to Lucy, I am flooded with relief and joy and gratitude knowing that Callum’s story will end differently.
Our baby Callum is two months old today! He is such a sweet boy. His favorite things are cuddling, sleeping in our arms, Mommy’s milk and Daddy’s voice. He really doesn’t like loud noises, lying flat on his back, bright lights and baths. He is smiling now and holding his head up (but still a little wobbly.) His siblings are obsessed with him (and his parents are too😉)
Callum is allergic to dairy, soy and wheat/gluten so I’ve cut all of those foods out of my diet so I can continue to breastfeed him. It’s a lot of work but definitely worth it. Callum is still fighting the anti-Kell antibodies that tried to kill him in the womb. We did blood work ten days ago and his hematocrit was 31. Today I was discouraged to find out that his numbers had dropped again. His hematocrit was 25 and hemoglobin was 9. His retic was 2 so we know that his body is trying to produce its own blood but the anti-Kell antibodies that remain in his system are destroying the new blood he makes. It’s hard to know when to transfuse and when to hold off on the transfusion. In utero Callum’s need for blood was being met by the transfusions Dr Trevett gave him. This sent the signal to his body that it didn’t need to keep producing red blood cells, so it stopped. Now we need his body to start making blood again but the only way to send that signal is to let him get anemic. We can’t let him get too anemic or he could suffer permanent damage to certain organs or could even die, but if we don’t let him get anemic enough his body will never get the signal that it is now responsible for producing red blood cells. Anyway, Callum has been looking a little pale and has been fussier than usual. Even though he is definitely anemic we are holding off on the transfusion and retesting his blood on Friday. In the meantime I’m supposed to monitor Callum closely and make sure he isn’t having trouble eating or breathing, and if he is I’m supposed to take him to the ER immediately. Whew, it is a lot. We are so sleep deprived because Callum has severe reflux (common with preemies) and he can’t ever lay flat to sleep. Even when he is slightly reclined he is uncomfortable, so that has been hard. I have a stack of birth announcements and thank you cards that still need to be sent out and my blog post about Cal’s birth story is only partially written. My house is an absolute disaster and my kids have had WAY too much screen time (I even let Nora get addicted to those mind numbing YouTube videos where people open Peppa Pig/Shopkins/Mickey Mouse/Paw Patrol toys and count gum balls.) But Callum’s needs are immediate so here I am on the couch holding him upright for an hour after I feed him and watching to make sure he is breathing ok. Everything else can wait.
Two things that are saving my sanity right now:
My Tula carrier that keeps Callum upright and leaves my hands free to do other fun things like dishes, cooking, laundry, two year old diaper changes, etc.
And our Owlet Smart Sock that monitors Callum’s heart rate and oxygen levels. An alarm will go off if his levels are too low or too high and all the info is sent to our phones so we can check his levels at any time.
This is one is too cute not to share. “Callum Weathersby is wiggling”
We have a lot of peace knowing that his heart rate and oxygen levels are constantly being tracked while he sleeps. We actually had heard about the Owlet sock long before Callum was born and really wanted one for him but couldn’t afford it. One day I came across a foundation called Knox Blocks which provides Owlet socks to families who can’t afford to buy them. I submitted a request for one and told them a brief recap of Callum’s story but didn’t really think anything would come of it. One day when Callum was still in the NICU I got an email from them telling me we had been chosen to receive an Owlet sock for Callum! We are so thankful for this gift, especially now while he is anemic. His oxygen levels and heart rate are good indicators of how his body is handling the anemia. I doubt I would sleep at all if it weren’t for this monitoring system. Thank you Knox Blocks, Palmer family and especially, baby Knox💙
Please continue to pray for Callum’s blood levels to normalize and for all of this to be over soon. Thank you!
P.S. I fell asleep several times while writing this so I apologize for any mistakes.
Today is our baby Callum’s due date! It is hard to believe he is almost six weeks old on his due date.
Yesterday, Callum had his sixth blood transfusion (third post birth transfusion.) His hematocrit had held steady at about 29 the past few weeks but this week it suddenly dropped to 23. He wasn’t eating well and was more irritable than usual so his hematologist and I thought it was best to go ahead and transfuse. The doctors and nurses at Children’s of Alabama have been so wonderful, just like they were with Nora a couple years ago. They called IV therapy to insert Callum’s IV since he is so tiny and they hit his vein on the first try. They also had to double check his blood type since it had changed since birth. He was born O- because he was 100% donor blood at birth, but since then he has started making his own blood so yesterday when they tested him again, his blood type was O+. During the blood transfusion I was able to breastfeed Callum (some hospitals don’t allow baby to eat at all until the transfusion is finished) and I had a comfortable recliner to sit and hold him in the whole time. He handled it really well and slept in my arms or nursed throughout the transfusion. I think he was just happy to have a whole day of Mommy’s complete attention for once.
We will do blood work again in about two weeks to see how Callum is doing. They tested Callum’s blood yesterday to see if he still had some of my antibodies circulating in his system and he does, which means the new kell positive blood he is making now will be attacked by my antibodies. Hopefully soon he will be antibody free and he will be making all of his own blood with no further need for transfusions (like Nora.) Ok, I can barely keep my eyes open so I’m off to bed!
I feel like I have come full circle and I’m back where I was a year and a half ago, clinging to God in desperation. After Lucy died and all of our dreams of future children died with her, I struggled to breathe, to even exist. Every minute was painful. I wrote a very simple sentence on my hand that reminded me that I could keep living and that I was indeed, safe.
I TRUST HIM
I found myself writing this same sentence on my hand this morning, for the first time in over a year. It was kind of a big step for me because I’ve struggled to trust Him for the past several months as I work through my grief and anger. But now, here I am again clinging to Him in desperation, begging Him for help. Things with the adoption are not going quite how we planned. We are kind of in the dark right now and don’t exactly know what is going on. Part of me wants to completely freak out and lose my mind in worry. It is important for me to remember a few important facts, though-
This is not my baby (yet.)
This is K’s baby and she can decide whatever she wants.
It is my job to support K in whatever she does decide.
God has K, P and baby S in the palm of His hand.
God has it all under control and He is still at work.
I TRUST HIM.
Last year when I wrote that simple sentence on my hand in an act of pure desperation, it was because of the tragedy that had just happened, the loss of my daughter. Today I write it in anticipation of what will happen over the next couple of weeks. Baby S is not my daughter right now, but my love for her has grown in my heart for months and months, and in Josh’s heart and the boys’ too. We love her so much, we WANT her so much, but she is not ours (yet.) It is a really weird place to be and we don’t really know how to act right now. Please pray for us, for baby S and especially for K. We all need your prayers so much.
*Possible Trigger
Whenever there is a new baby coming in my extended family, we make predictions about the baby’s birth date, weight and length. I think I started it with Liam and we’ve done it with all the babies that have come since (and there have been a lot of cousins since!) It is fun to see who gets their predictions right and sometimes it’s funny to look back and compare what we THOUGHT the baby would be like to the ACTUAL birth date and size. Since I was a big baby, we thought Liam would be big too, but he was a “meager” 7 pounds 3 ounces and 19 1/2 inches long 🙂 On the flip side, we assumed Asher would be like his brother and be a normal size but we were way off!
I have put off making predictions about this baby since the whole idea is kind of a trigger for me. We never made predictions about Lucy. Who could have guessed that she would be born in February instead of July? Who would have predicted 1 pound and 9 inches long? And why did any of it matter when she was born with a heart that was no longer beating? What I really would like to know about our sweet S is not her birth date or her size. I want to know if she will be born breathing, if her heart will be beating. I want to know if she is going to be healthy, if she will be ok. I want to know if I will get to be her Mommy. I want to know if our hearts will be facing another tragedy in a couple of weeks.
My small group leader just adopted a baby last year and she advised me to try to enjoy this waiting place that we’re in. She looked back at her own time of waiting right before her son was born and wished she had savored it more. That was just what I needed to hear. This baby deserves to be celebrated like the others and it’s ok to hope. It’s wonderful to hope. So I am stepping out on a limb and we are trying to have fun during the last few days of our wait. We are making predictions about our sweet girl and we would love for you to make predictions too! I wonder if anyone can guess all three right? It will be especially hard since none of you know her exact due date (K’s information, not mine to share yet.) I can say that she is due at the end of October. So, here are our predictions for baby S:
Me: Oct. 20 7lb 1oz 19 1/2 in
Josh: Oct. 21 6lb 8oz 18 1/2 in
Liam: Oct. 18 3 lb 2 in
Asher: Nov. 3 10 lb 4 in
Let’s hope Liam and Asher are way off! I won’t share my extended family’s predictions since there are so many of them. What do you think? Any of you want to make a prediction?
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.
*For those of you who feel weird about lactation, breast feeding, etc. now is your chance to turn away. You have been warned.
I am proud to say that we have a growing store of breast milk in our freezer for our baby girl and it was produced by ME! I am lactating! How cool is that?
I have been surprised by my body over the past few months as I have been working on inducing lactation so that I can breastfeed my daughter when she arrives. I honestly didn’t know if it would work. I had heard that some women can start producing milk if they simply start pumping regularly, so I tried it. I thought it might be easier for me since I breastfed Liam and Asher for a year each and after I lost Lucy my milk didn’t dry up for MONTHS. So I started pumping every 3 hours around the clock and taking herbs to increase milk supply and all I got was one single drop. It was a really depressing time for me because every time I pumped and got nothing it reminded my of my losses and the fact that I can’t just get pregnant and have a baby and breastfeed like most women can. I almost gave up completely on the whole lactation idea. I decided to try the Newman-Goldfarb protocol to induce lactation, but I really had very little hope that it would work. A lot of women lose confidence in their bodies after they lose a baby because it feels like your body failed at it’s most important task. My own body actually attacked and killed Lucy so I had very little trust that it would succeed in producing milk for a baby when I’m not even pregnant. Fortunately, it has proved me wrong and I am gradually gaining confidence in my body again. I love being able to produce healthy breast milk for my baby and I can’t wait to breastfeed her. I missed that so much with Lucy. What an incredible gift.
So how does it work? Basically you trick your body into thinking you are pregnant by taking birth control pills for several months before your baby is due. I think the protocol suggests starting at least five months ahead, although you can start pretty much whenever you want. As well as taking birth control, you take domperidone, which is an anti-nausea medication that has lactation as a side-effect. It is NOT champagne, like I thought 🙂 Anyway, during the months that you take the birth control and domperidone ahead of time, your body is preparing your breasts for lactation, just like it does when you are pregnant. Around 6 weeks before the baby is due you are supposed to stop the birth control pills so your body thinks you gave birth, and then start pumping every 3 hours. This is when your milk should come in and you should have a good supply by the time the baby arrives. I was only on the birth control for about two months when my body just started producing milk anyway, even before I stopped the birth control. Apparently my body reacted very well to the domperidone and I was getting uncomfortably full of milk, so I decided to stop the birth control early and start pumping. I now pump every 3-4 hours and freeze the milk for when baby girl arrives. I take fenugreek and blessed thistle, which help with milk production.
I try to eat oatmeal every day and drink lots of fluids, including mother’s milk tea, which also increases milk production (and tastes great too!)
I have also recently discovered lactation cookies, which are healthy and delicious and help with lactation (and NO, they aren’t made with breast milk like I first thought, haha!) I remember being exasperated at times with breastfeeding Liam and Asher because it was so hard and exhausting. Breastfeeding is a lot of work! It is difficult to find time to pump every 3-4 hours while caring for 3 and 5 year old boys right now. It’s hard to remember to take all the supplements and it is expensive (although not as expensive as formula.) I’m also taking a risk since this baby isn’t technically mine yet. K and P have the right to make whatever decision they want regarding parenting, and they could still choose to parent, which would leave me with a lot of breast milk, tears and no baby (although I don’t think they will.) But she is worth the risk. I recognize how blessed I am to have the chance to breastfeed. After losing Lucy and my ability to have live babies, I thought I would never get to breastfeed a baby again. It feels like an amazing gift and I am honored to be able to do this for my daughter. It felt like Christmas morning when I went up to get my breast pump out of the attic and go searching for all my bottles, nursing bras and nursing tank tops that were packed away. How fun! I am loving it and I don’t even have my baby yet. I can’t wait to experience breastfeeding again with my new baby.
We have a slight (maybe not so slight?) change in our adoption plans. There were A LOT of factors going into this decision, that I won’t share here, but we are going to complete our adoption through a private attorney instead of Bethany Christian Services. After a lot of prayer, discussion and input from both the agency and K and P, we think this is the best decision for everyone (including the baby.) K and P are totally on board and pleased with the decision, as are we. Our attorney is wonderful, and we all feel more comfortable working with him.
When we made the decision to change plans, we weren’t really thinking much about the money, but we soon realized that the adoption would be much cheaper this way (which is kind of the icing on the cake.) God has, once again, provided just enough money for what we need next. I was starting to get really concerned about the financial part of the adoption since we still were missing about $13,000 and the baby’s due date is fast approaching. Well, as always, He knows what He is doing. It looks like, if we go with our lawyer, we will have just enough to complete the adoption, no more, no less. I am so glad now, that we didn’t raise all of the money we needed for the agency fees because if we had, we would now be left with an awkward overflow of money that we would somehow have to return to the donors. But as it turns out, we have the perfect amount! Also, we didn’t really lose any money by leaving the agency when we did, so we feel like it was a good decision. Thank you again for all of your prayers and support. Please continue to pray for K, P and the baby. Only two more months!
…healthy, beautiful, chubby cheeked GIRL! Woohoo! Let the crazy baby girl shopping continue! Yesterday K and I went together to get a 3D ultrasound of the baby. We got confirmation that it is indeed, for SURE, a baby girl and we are SO excited! It was really nice to be able to spend some alone time with K and it was fun to have this experience with her. I loved looking at our girl together and hearing her heartbeat (the most beautiful sound in the world.) It makes me happy to think of telling my daughter these sweet memories of her mommy and her first mom doing things together for her and doting on her before she was born. I truly am so thankful for K. Her willingness to include me in everything has been so gracious and generous, and I am forever grateful.
During the ultrasound, baby girl was being stubborn and putting her hand in front of her face, or turning her face away almost the whole time. The ultrasound tech tried lot’s of different things (and made poor K shift around so much) to try to get the baby into a better position, but we never got a clear shot of baby’s face. This is the best we have:
Baby Girl sucking on her bottom lip
Even thought K is barely into the third trimester, the baby already has some substantial chubby cheeks, which I CANNOT WAIT to kiss! She was absolutely perfect. We are overwhelmed with love for this baby. We are smitten already.
This is so exciting…the post I’ve been waiting to write for so many months now.
We are expecting a baby in October!
No, we are not pregnant, but we are still expecting our third earth baby to arrive in October. We have been chosen by the most amazing expectant mother (“K”) and father (“P”) who’s baby is due at the end of October. K is such an intelligent, strong woman and we are so blessed to have her in our lives, for the rest of our lives. P is also great and we are so thankful that he is supportive and on board with everything. We can’t wait to meet our baby too! K actually found us through the internet, not through our agency, and she just happened to live in Alabama! She is now working through our agency. We only had our online profile up for about a week before she contacted me in May, so our wait was extremely short compared to most. That was a huge blessing for us! Almost immediately, Josh and I agreed that we felt a connection to K and to this precious baby. She told us right at the beginning that she didn’t know the gender of the baby yet, so that was a hard decision for us. We had decided at the beginning of the adoption process that we would try to wait for a girl. We had our hearts SO set on a girl, but after meeting K, we started to feel our hearts change. It was harder for Josh, surprisingly. He was adamant about having a daughter but I just wanted a baby. We talked about it and prayed about it a lot. Meanwhile, K and I were emailing back and forth, getting to know each other. The more we emailed, the more I liked her and fell in love with her and the baby. The more we prayed about it, the more we felt peace about K, P and the baby, regardless of gender. Finally, Josh and I agreed that we loved this baby already and would be open to whoever God wanted to give us. From the very beginning when I have asked God to tell me what to do and how to proceed (Should we do IVF? Should we try naturally? Should we adopt? Should we stop with two?) I have heard Him say, “Let me redeem it.” Well, if He wants to redeem it with this sweet little baby, boy or girl, we want Him to do it His way. So, we are on board, regardless of gender, and we are SO excited and in love with this baby already. After we decided this, K had to go to the emergency room for dehydration and while she was there they did an ultrasound to check on the baby. They said that the baby looked HEALTHY (woohoo!) and they made a guess at the gender. The ER doctor thought the baby looked like a GIRL 🙂 but we still aren’t 100% sure. K will hopefully have confirmation on the gender in the next few weeks, and we will update you when she does!
Thank you all for your prayers and support on our journey so far. We honestly don’t think we would be where we are today without all of you. Would you continue to pray for K, P and this sweet new baby? Please pray that the rest of the pregnancy and the delivery would go smoothly, and that K would have peace and strength to get through this. Pray that P would have peace and strength as well, to be a loving and supportive father and husband. Please pray that God would provide in an amazing way for K, P and their family. Pray that God would show us how to support K and P well and that our hearts would be protected from more heartache. Pray for our sweet new baby- that (s)he is safe and healthy and will always feel loved and confident in who he/she is. I think it’s so amazing that this baby gets to start life off with not two, but FOUR parents who love him/her so much already. Thank you in advance for your prayers and support. We will keep you updated!
Asher was also SO excited to be home especially since he got to play with his brother (they miss each other desperately) and his cousins.
❤️”
A couple hours after I arrived at their house the power went out and didn’t come back on for days.
His hematologist checked his blood for my antibodies and it came back completely negative! I was surprised by how emotional I felt when he told me Callum’s antibody screen was negative. My baby was finally free from my dangerous antibodies for the first time in his life. He can now make his own blood and it won’t ever be destroyed by my antibodies again. It has been a long hard road to get my boy to safety. We did it! They removed his IV and sent us home without a transfusion.
And our Owlet Smart Sock that monitors Callum’s heart rate and oxygen levels. An alarm will go off if his levels are too low or too high and all the info is sent to our phones so we can check his levels at any time.
