Two Months and Still Fighting

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馃槈)

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聽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馃挋

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.

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ISO Moms From Europe

I need your help! If you are from the UK, Germany, France, Italy or Spain and have had a pregnancy with HDFN (hemolytic disease of the fetus and newborn/isoimmunization) which included an intrauterine blood transfusion, you are needed for a research study. Your story could possibly help protect babies in the future and prevent other parents from going through what you went through (and you can make a little extra money while doing it.) A research study is being done on a new treatment for HDFN and they need women from Europe who are willing to do an hour long interview about their experience with antibodies during pregnancy. They will pay you $100 for your time. Here is a little more information about it from Ms. Benson-

We invite you to take part in a confidential 60 minute phone interview to discuss your experience with HDFN (Hemolytic Disease of the fetus and Newborn). We offer $100.00 for your time on the phone. We are working on behalf of a pharmaceutical manufacturer who is exploring the development of new treatment options to treat women affected by HDFN. The company is interested in understanding the experiences of mother鈥檚 affected by HDFN in order to help them better understand patient needs so they can work to develop the best treatment possible for this disease of high unmet need.

The central objective for these qualitative interviews is to explore the patient journey for patients with a history of HDFN including:

路 How you received your diagnosis

路 What types of treatments you received

路 What types of treatments your baby received

路 How HFDN has impacted your life

路 Your thoughts on a new product in development to treat HDFN

bioStrategies Group is a consulting firm specializing in helping clients develop and commercialize innovative technologies to better serve patients, physicians and the healthcare system. Our clients include major pharmaceutical, diagnostic and biotechnology companies聽

I did the interview already and it went great. The treatment sounds amazing. If you would like to participate please email me, Bethany Weathersby at bethanysk55@yahoo.com or Julie Benson at benson@biostrategies.com

Two Down, Two To Go

Our baby boy just had his second IUT this week in Atlanta and we are so thankful that everything went smoothly. With this IUT Dr Trevett made sure to give me an IV sedative and pain killer before the IUT, which really helped calm my nerves and dull the pain of the needles during the procedure. I was still clear headed enough to understand what was going on though, so I liked that. Once again, baby boy was in a bad position for the IUT so Dr Trevett had to stick him in the thigh to paralyze and sedate him before doing the transfusion. His beginning hematocrit was about 26 and ending hematocrit was 43. This time baby didn’t have any weird heart arrhythmias and he seemed calmer during the IUT. After putting the blood into baby’s umbilical vein Dr Trevett went in a second time to do an IPT (put reserve blood into baby’s belly.) Unfortunately, the baby was lying on his side and there was only a tiny space where Dr Trevett could insert the needle without puncturing his liver or kidney, so he decided not to even try it. It wasn’t worth the risk (and I’m glad he didn’t try it.) Since the baby doesn’t have any reserve blood in his belly to absorb over the next couple of weeks, we will have to do the next IUT in two weeks instead of three weeks like we had hoped. So, our next transfusion will be on Monday, August 28th when I’m a little over 32 weeks pregnant. Hopefully the IPT will work next time so that we can go three weeks and then have the last IUT at 35 weeks and deliver at 37-38 weeks. That would be a dream come true! 

The same day I had the IUT I also had my port removed (which made for a really long day!) and I now have no port/permacath for the first time in five months. I feel so free! It’s also wonderful not to have the weekly eight hour IVIG infusions. 

Thank you all for praying for us and following our story. I haven’t been able to blog as much as I would like because our computer recently died (it was the first time we bought a computer that wasn’t a MAC and we have learned our lesson.) We can’t afford a new computer at the moment so I’m writing this post on my phone. I will try my best to update everyone as we get closer and closer to meeting our son. 

Baby’s First Transfusion

Yesterday baby boy’s MCA scan showed that he is probably anemic and needing his first blood transfusion. His MoM was around 1.49 and Dr. Trevett wants to play it safe and go ahead with an IUT. After the scan yesterday I was given my first steroid shot to develop baby’s lungs in case he has to be delivered tomorrow. I’ll have my second round of steroids today. I think the procedure will be around 7:00 tomorrow morning (August 2nd) in Atlanta. I just realized that August 2nd was Nora’s due date 馃檪 Hopefully it won’t be baby boy’s birthday! I will be 28 weeks 4 days tomorrow and baby weighs a hefty 3lbs 5 oz so that is comforting. The bigger the baby, the easier the transfusion is for the doctors, and a bigger baby is also helpful in case he has to be delivered early. My husband Josh and I went back and forth about whether to have our IUTs in Houston or in Atlanta. We feel like the baby is a good size, it’s not an emergency situation, baby isn’t in distress, the cord insertion is in a great spot so Dr Trevett should be able to reach it easily, so we are going to have the IUT in Atlanta with Dr. Trevett. He feels confident doing this transfusion, and would tell us otherwise if he didn’t, so we feel like we can trust him with our little man.

Since I’ve never had an IUT in Atlanta there are obviously some details about the procedure that I won’t know until the procedure happens. Every hospital and every MFM has their own protocols and procedures and does things slightly differently. Dr. Trevett does try to follow Dr. Moise’s protocols in general. I will be given a light sedative but will be awake for the procedure. The anesthesiologist will be there, ready to deliver if anything goes wrong with the baby. If that happened he would just put me under general anesthesia and do an emergency c-section, no time for an epidural or anything like that. So, once I’m sedated and in the OR, Dr. Trevett will make sure the donor blood is all ready and he will put a needle through my uterus, through the placenta and into the umbilical cord, hopefully, then he will give the baby a sedative and a paralytic. I think he said he also might do this by just putting the needle into baby’s thigh, but I can’t remember. It might depend on baby’s position tomorrow. Either way, baby is paralyzed so that he won’t move during the procedure, which is very important for this boy since he is ALWAYS super active during ultrasounds. We definitely don’t want him grabbing the needle or kicking it once the transfusion starts. Once baby is paralyzed Dr. Trevett will draw a tiny bit of the baby’s blood and have it tested to find out baby’s exact hematocrit and hemoglobin. Once he has that number he will know how much blood to give the baby and will start the transfusion. They will keep a close eye on baby’s heart rate to make sure he doesn’t start having decelerations or start going into distress. Once the blood is in, they will go in a second time and stick the needle into baby’s abdomen to put extra blood there as a reserve for him to absorb over the coming days and weeks. This is called an intraperitoneal transfusion. Once that is finished they will take the needle out and the procedure is over. At some point they will check he baby’s ending hematocrit, I’m guessing after they finished the blood transfusion in the cord but before they take the needle out to put blood into baby’s belly? Anyway, those are the basics as far as I know.

After the procedure is finished they will monitor my contractions (if I have any) and baby’s heart rate for a while to make sure he’s ok. They will also wait until baby’s paralytic wears off and he is moving like normal before they discharge me. I’ll probably be on bedrest for a day or two and Dr. Trevett will do an ultrasound 24 hours after the IUT to check on baby. Usually, if a baby dies as a result of the procedure (which is possible) then the baby dies within 24 hours of the IUT so that is why they recheck after the 24 hours. Those 24 hours are the MOST nerve-wracking of the whole pregnancy so please pray that the baby is active for me and that God fills me with peace.

Yesterday on the four hour ride home I felt my anxiety growing and it was hard for me to fight back tears while driving. Lucy never moved again after her IUT and died 8 days later. I know a lot of babies who have passed away because of this procedure and I was thinking about them on the drive home. Of course, I know MANY more babies who have had the procedure with no complications and they are thriving now, one of them being my two year old little beauty, Nora. When I got home I was tackled by Nora who immediately asked where baby brother was. She said she wants to rock him and hold him. I lifted my shirt up and showed her that he was still in my belly but told her that he would be here soon. I can’t imagine breaking the news to my kids that their baby brother didn’t make it. I had to tell the boys that the baby was getting low on blood and needed a blood transfusion. When I was going through this with Nora I could be more vague because they had just turned 4 and 6, so I told them Nora needed a shot to feel better and they were fine with that. Now they are older and understand the danger more. They have more questions and need more details (especially my oldest, Liam.) Liam asked, “So when someone loses a baby, do they get another chance? Another chance to have a baby?” I wasn’t sure if he meant another chance to have another baby, or another chance to have that same baby. I just told him sometimes they do get another chance to have another baby, but not always. He looked anxious but I tried to reassure him with the statistics, that baby could have up to a 99% chance of surviving the IUT tomorrow. We also reminded him that Nora had the same procedure, FIVE times and is perfectly healthy. She was skipping around, singing and bubbling joy all over the house last night and I couldn’t stop kissing her. When I looked at her and held her I felt my worry melt away, because she DID have this procedure five times and she is perfect. I am reassured by her presence and the reminder that God is fully capable of doing anything and He has a plan for this son of mine. Didn’t He say, when we were struggling with the idea of trying to conceive one last baby, “LET ME BLESS YOU”? And once I was pregnant, didn’t He say clearly, “This pregnancy will be a peaceful one and I want you to enjoy it.” This morning a sweet woman from the Iso Moms group I’m a part of on Facebook sent me some verses to encourage me. The first one was a special verse that God gave me right before I got pregnant with Lucy, right before I unknowingly stepped onto this roller coaster of trying to grow our family.

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.

I love that I don’t have to conjure up the hope for myself somehow. He will overflow my heart with hope by the power of the Holy Spirit. I can trust Him to provide the peace, hope and the courage to trust Him right when I need it. Please pray with me that God will protect and strengthen our son tomorrow when his safe and cozy world is suddenly invaded with needles and medications. Pray that God will fill Dr. Trevett with peace, confidence and wisdom during the procedure. Thank you all so much for your support. I will try to keep everyone updated!

 

Slight Improvement!

Thank you all for your prayers and encouragement over the past few days. Today’s ultrasound was better than Monday’s and baby boy’s MoM levels were slightly lower than they were on Monday! Today they were around 1.22 and the previous levels were around 1.3

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He looked really healthy and wasn’t showing any signs of anemia on the ultrasound.聽Dr. Moise and Dr. Trevett still want me to redo my three rounds of plasmapheresis and have back to back IVIG infusions afterwards to try to keep baby safe from my antibodies a little bit longer. Unfortunately my nephrologist (the specialist in charge of my plasmapheresis) refused to order the treatments unless I have a permacath so they will be surgically placing the permacath (again) tomorrow morning in Atlanta. Then I will come home and have IVIG all day Monday before driving back to Atlanta for my plasmapheresis treatments that will happen on Tuesday, Thursday and Friday. I will have IVIG infusions again on Saturday and Sunday then hopefully I can let my body rest for a few days. I am trying hard not to be overwhelmed by all of this and the best way to do that is to be thankful. I have so much to be thankful for. My baby is healthy and alive at this moment. I have amazing friends and family who will drop everything to watch my kids, bring us a meal, take my kids to school, etc. and we couldn’t do any of this without them (thank you Emily and Mark, Amy and David, Shelly, Jessica and Shoney!) I also know what a great privilege it is to be given the chance to suffer in the place of my child. All of the treatments and procedures I will go through in the next week are being done to keep my son safe and to keep him from suffering like Lucy did. Not many parents are given the opportunity to experience physical pain in the place of their child, and I do not take this gift for granted. Please pray that these treatments work in keeping our boy healthy.

Another Baby?

 

I have started this blog post and then erased it several times. It’s a sensitive subject, growing your family, adding a baby, especially when you already have three and your pregnancies are extremely high risk. After losing a baby it can feel even more delicate and precarious to discuss pregnancy, child birth, number of children, sibling ages, age gaps and growing your family. Unfortunately many people feel compelled to share their opinions about whether other families should add another baby or stop having babies, especially when it comes to high risk pregnancies or large families. I erased and rewrote this blog post so many times because it is hard to find the right words and to express what is on my heart. We want another baby. We know God wants us to try again. Yes, the next baby could be in a lot of danger in my womb. Yes, we are afraid, but also confident that this is what God wants us to do. I don’t want this post to sound like I’m apologizing for my decision to add another baby to our family. I don’t feel like I have to defend my choice to try again. I don’t owe an explanation to anyone regarding my private decisions about family planning and trying to conceive. BUT, on the other hand, I like being open about this journey. I like sharing my story with all of you and my hope is to be the encouragement that another parent needs when they are struggling with their own family planning decisions. I want others to be inspired not to give up on their dreams of a living child, or a big family or a rainbow baby. I also need your prayers and your support and so I invite you to come on this journey with us to hopefully bring our final baby home.

2016 was the first time I’ve gone an entire year without being pregnant once since 2007. After months and months of prayer we have decided that 2017 is the year that we try for earth baby number four, our last baby. We always wanted at least five children but after developing anti-kell antibodies and losing Lucy we thought that dream was shattered. We mourned the loss of our ability to have more babies as deeply as the loss of our daughter. It was such a sad, hopeless time in our lives. But when Nora was born healthy we realized that we had found the right doctor and the right treatments that worked for us. Even though we can never get our Lucy back on this earth, it was an amazing feeling to realize that our dead dreams of growing our family had been resurrected and maybe, just maybe, we COULD have the big family we always wanted. God has reshaped our hearts and changed our dream of five kids to a dream of four kids. We desperately want Nora to have a sibling friend close in age. We want four kids around the table at Thanksgiving dinner when they are all grown up. We would love for Nora to have a sister on earth, but we know that is up to God. We also know that if we don’t try for this one last baby, we will regret it for the rest of our lives. I knew even while I was pregnant with Nora that I would want one more after her if she survived. I knew God was planting a seed in my heart and growing it for a purpose.

Are we afraid? Of course we are scared, but we trust God wholeheartedly and we trust His proddings and nudgings. We trust in His plan for our lives. Does this mean God will give us a healthy, living baby next? I have no idea. It is completely possible for God to call me to try again and then for me to step out in faith, get pregnant and lose the baby. God is God and I am not. I don’t always understand His decisions. But now, more than ever in my life, I trust Him and I feel excited about what He has waiting for me in my future. And who am I to limit God to a certain number of miracles in my life? If He calls me out upon the water, I will follow just like always. And I know the steadfast love of the Lord never ceases. His mercies never come to an end and neither do His miracles.

Job 5:8-11 As for me, I would seek God, and to God would I commit my cause, who does great things and unsearchable, marvelous things without number: He gives rain on the earth and sends waters on the fields; He sets on high those who are lowly, and those who mourn are lifted to safety.

Yes, Lord, lift us to safety. Bring us this one last baby you have placed in our hearts, and place him in our arms. Continue to do unsearchable, marvelous things in our lives.

So, the logistics… we know in some ways it will be harder to go through such a high risk pregnancy again because we now have three children to take care of during all the treatments, appointments, procedures and sickness. We asked the boys a few months ago if they were willing to go through all of that again for another baby in the family…our last little brother or sister. We reminded them that Mommy would be very sick and would be gone to appointments a lot. We reminded them that the baby could die just like Lucy or the baby could live just like Nora, but we don’t know which it will be yet. We told them that Mommy might have to move to Houston for a few months and we would miss each other so much. If they had not been on board with the idea we would have reconsidered because they will have to make sacrifices for this next baby to get here safely, and they will take the risk of having their little hearts shattered again. Josh and I were surprised at how quickly both boys jumped up and down and shouted “Yes!” and “Please have another baby Mommy!” and they were on board with all of it. Asher even begged for me to have two or three more babies and I told him is wasn’t happening, but maybe we could try for one more. Our families are supportive and willing to help us through the pregnancy again, which we are so incredibly thankful for. We couldn’t have made it through our last pregnancy without them. My mom even said she would be willing to move to Houston again if we had to. We have an amazing, supportive church family and sweet friends who are encouraging and helpful too, so we feel as ready as we ever will be.

We met with a new MFM in Atlanta who was actually trained by Dr. Moise. His name is Dr. Thomas Trevett and he is experienced with isoimmunization/alloimmunization. He even won an award for the work he did developing the use of phenobarbital at the end of the pregnancy to help babies with HDN avoid blood transfusions and high bilirubin after birth. I took phenobarbital the last ten days of my pregnancy with Nora and I truly believe it is one of the reasons why she didn’t struggle with bilirubin after she was born and didn’t have to stay in the NICU. Josh and I met with Dr. Trevett at the beginning of January for a preconception appointment to discuss a future pregnancy and to see if he was even willing to take me on. My case is risky and the treatments will be pretty extreme so I would totally understand if an MFM was hesitant to accept me as a patient. He was so great. He understood everything about anti-kell antibodies and he follows Dr Moise’s protocols already. His course of treatment for me was the same one I had decided on already and very similar to what we did to save Nora. Dr. Trevett and I decided to start the treatments a little earlier than we did with Nora. During my pregnancy with Nora we had to struggle with the insurance company for a while to get them to cover the plasmapheresis and IVIG so the treatments were started a week or two later than I would have liked. I started plasmapheresis at 11 weeks and IVIG at 12 weeks in my last pregnancy and Dr Trevett will start them a week or two earlier with my next pregnancy, just to be extra proactive. Dr. Moise and Dr. Trevett have agreed to collaborate together for my care, which I appreciate so much. If the baby needs an early IUT before 20 weeks I will go to Houston to be treated by Dr. Moise, who has more experience doing early IUTs. If the baby doesn’t need an IUT until later in the pregnancy Dr Trevett will do the IUTs. The main reason we are using both doctors is because Atlanta is about a four hour drive from us and Houston is about an eleven hour drive. It would be much easier for me to take care of my three kids if I didn’t have to relocate to Houston for the whole pregnancy. We are still praying that God would give us a kell negative baby so that the baby could be safe from my antibodies. Supposedly, each baby of ours has a 50% chance of being kell positive or kell negative. BUT we know for sure that Asher, Lucy and Nora are all kell positive and Liam might be, so for some reason Josh’s genes seem to dominate. Maybe this will finally be our kell negative baby?

Please join us in praying for our future baby, that (s)he would be kell negative and would be born healthy. Please pray that Nora would get to be a big sister and have a sibling close in age. She would LOVE to have a real baby to take care of and boss around!

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Asher’s Christmas Play

Today, like most days, was a mixture of deep gratitude and grief. I think those who have suffered great loss have also been given a new perspective on life and a deeper sense of gratitude.

My four year old, Asher, had his preschool Christmas play today. He was such a cute little wise man…yawning, playing with his crown and desperately searching the crowd for my face.

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The four year olds sang their songs last since they were the oldest kids in the preschool. I had to leave the room when the two year olds went on stage to sing. I sat on a couch in the lobby crying for Lucy while Nora babbled and smiled in my lap. I thought back on the three previous Christmas programs I had attended there. Liam’s first one when I was pregnant with Lucy…I tried not to throw up during his performance, I was so nauseated and anxious about my baby. The next year聽I almost couldn’t sit through the performance because I was so crushed with grief. The place seemed to be crawling with little babies and pregnant women. I had lost three babies that year and had no hope of bringing home my own living baby ever again. I thought I was going to have a panic attack and it took me days to recover emotionally. Last year I sat watching three year old Asher in his first Christmas play. I was pregnant with Nora…so nauseated and so terrified that I would lose the baby. And then today, there I was crying on the couch for my two year old Lucy and smiling at my miracle baby in my arms. Such a strange mixture of joy, gratitude, grief and loss. I know that I was probably a trigger today for some other hurting woman who had lost a baby and I hate that I made her pain worse. Nora sat perfectly in my arms the whole time, smiling sweetly at everyone. She is medicine to my soul.

When the two year olds were finished, I went back into the sanctuary and watched Asher file onto the stage and my heart overflowed with love. I thought about what a blessing he is to me and I reminded myself that somewhere out there a mommy was missing her four year old just like I was missing Lucy. Asher could have died like Lucy did. He has kell positive blood just like his daddy and sisters, but because I only developed the antibodies after I gave birth to him, he was safe.聽If I had developed the antibodies before I got pregnant with him, he would have been stillborn. Oh how happy I am that I got to see my four year old perform in his Christmas play today! I love having Asher here on earth with me and I love that I know what color his eyes are and what his voice sounds like. Today was a gift, even though I had to live it without Lucy. I love my life and the BEST part is that it ends with heaven.