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. 

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First IUT a Success

Our first IUT was successful and baby handled it well. He is squirming and kicking much more now than he was before the transfusion so he must be feeling a lot better. Dr. Trevett did an MCA scan right before the transfusion just to see what baby’s numbers were and his MoM was 1.5 but we are guessing it was actually higher than that. Since I had had two rounds of steroid shots to develop baby’s lungs, and steroids can artificially lower MCA scans, we think it was over 1.5 by that point. Dr. Trevett had planned to go through the placenta and into the umbilical cord with the needle and put a paralytic and sedative into the cord to keep baby still during the procedure but had to change plans at the last minute. The back of baby’s neck was pressed up against the umbilical cord insertion and Dr. Trevett didn’t want to risk going near his neck with a needle before he was paralyzed so he stuck baby in the thigh with the needle to paralyze and sedate him. Baby did not seem to like that one bit and his heart rate started acting up after that. He started having some arrhythmia and his heart rate seemed kind of slow. Dr. Trevett said he was having PACs (premature atrial contractions) which are usually harmless, but it definitely scared me at the time. They then went into baby’s umbilical cord with the needle and drew some of his blood. My husband, Josh, was allowed to be in the operating room for the first time ever to watch the procedure and be there to support me and he said he was shocked by how much blood they drew. He was equally surprised when he saw how much blood they put into baby! He said he was expecting them to give just a tiny amount of blood since baby is still so small (at least compared to a grown person) but he said they hung a normal looking bag of blood on an IV pole and started slowly transfusing it into my belly (and into baby) 10ccs at a time. Baby’s beginning hematocrit was 28.6 and his ending hematocrit was 40, which we were very happy with. Dr. Trevett decided not to do the IPT (putting extra blood into baby’s belly) since his beginning hematocrit wasn’t too low. I am glad that he didn’t now because of baby’s weird heart rhythm.

Out of all the IUTs I’ve had (this was my seventh) this one was definitely the most painful. Apparently they don’t really sedate women for the procedure at this hospital so that came as a surprise. They did give me a little pill to take orally before the procedure (Ativan, I think) but it had absolutely no effect on me and I felt completely awake and wired during the procedure, which wasn’t helpful for my nerves or for the pain of the needles going through my uterus and placenta. Dr. Trevett said he will definitely use a sedative for me during the next IUT so hopefully that will be a better experience.

After the IUT was finished Dr. Trevett kept me and baby on the monitor for six hours to make sure he was ok. His heart continued to have the weird offbeat PACs, which was unnerving. Eventually his paralytic wore off and he started moving around a lot so that was reassuring. I had contractions every 10-30 minutes but they never got closer than that so no one was worried. The contractions have continued since the IUT. The same thing happened with Nora and I was diagnosed with an “irritable uterus.” That basically just means that I got to have regular, real contractions that didn’t induce labor or make labor progress. With Nora it got worse after each IUT so I’m expecting the same thing to happen with this baby. Anyway, I was released to go back to the hotel after that and the next day Dr. Trevett did an ultrasound to check on baby. It’s always a good idea to do an ultrasound 24 hours after an IUT since the first 24 hours after the procedure are the most critical. If anything is going to go wrong it will be within 24 hours of the IUT. His MoM was down to 1.03 and his arrhythmia had completely cleared up. It was so good to hear his heartbeat sounding normal again. Dr. Trevett will do baby’s second IUT on Monday, Aug 14th, 12 days after his first IUT.

Now that IUTs have started I have stopped doing the weekly IVIG infusions and will have my port removed next week since it isn’t needed anymore. I’m really excited to get the port removed and stop IVIG! I already feel less nauseated (finally went a whole day without taking Zofran!) and have a little more muscle strength than before. Thank you all so much for praying for us and encouraging us. I had so much peace through everything that happened this past week and I know that would have been impossible without God and without your prayers. Please continue to pray for our boy. He has a lot of hurdles to get past to make it here alive and healthy. Here is a picture of him at his check up after the IUT. He was rolling over so the picture isn’t good but you can see his cute, chubby fists, ready to fight!

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ULTRASOUND #31

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 🙂 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!

 

Another Good Ultrasound!

Just a quick update on my ultrasound yesterday. Baby’s MCA scan showed lower numbers than Monday so we have canceled the IUT. Thank you to everyone who was praying with us! Baby looked great again on the ultrasound, no signs of hydrops or anemia. He was a bit less active than usual but that was actually a good thing because it helped Dr. Trevett get a more accurate MCA reading. The highest number he got was 1.36 and on Monday it was 1.39 so we are thrilled yet again with our boy’s progress. I will go back for another scan on Monday, July 31st and I’m hoping his numbers haven’t jumped back up. I will keep everyone updated!

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Nora Turns Two and Baby Brother Keeps Fighting

On July 19th our beautiful Nora Juliet turned two years old! Her birthday will always feel miraculous and holy because it is the day God fulfilled so many promises He made to me when I was at my most broken place. It was the day that I did the “impossible”….I gave birth to a healthy, full term kell positive baby girl. God used her to bring light back into our darkness, to heal gaping wounds, to restore hope, to empower women all over the world not to give up. Nora will always be our reminder that God is indeed good, and He does love us. She is our reminder that God places our deepest desires in our hearts for a reason and we do ourselves an injustice if we ignore them, especially when He is calling us to step out in trust. I know that He has great plans for Nora’s life. Thank you, God, for giving me this daughter I can keep. We love her so much and have loved watching her develop and grow over the past two years. We praise you, for you have done gloriously.

Isaiah 12:5 Sing praises to the Lord, for He has done gloriously; let this be made known in all the earth.

Now, a little bit about Nora (because I still marvel that we get to know her on earth and see her personality develop!) Nora is the darkest of our kids- dark brown eyes, darker skin tone and darker hair. As her hair grows longer and longer it gets curlier and curlier and she now has ringlet curls all over her head. She is super maternal and bossy and sweet. She will boss her brothers, her cousins, adults and animals, and I’m sure her baby brother will get it when he arrives too. She wants to take care of everybody. She is independent and loves to drink out of a normal cup, eat with utensils (ALWAYS) and help me unload the dishwasher. She speaks in full sentences and has an amazing vocabulary. At age two her brothers knew all of their letters and numbers but she only knows A, O, S and X. She’s much more interested in relationships than things like numbers or letters. Nora talks and sings constantly and makes up songs about things she’s thinking about or doing. Her favorite place to be is anywhere with people, especially friends and extended family. I think her favorite person on earth is “Manga” (how she says Grandmama) and they have a very sweet, special bond. I sometimes think this is because “Manga” was the one who came to Houston with me and lived in the Ronald McDonald House with us for months. Nora heard Manga’s voice in utero as much as she heard mine and so I think a special bond was formed. Often, Nora wants to go to Manga instead of me when she has he chance. Nora is our daily delight, making us laugh every few minutes. Seeing her with her Daddy is still one of my greatest joys because I ached for so long to see Josh with his own daughter in his arms. Her brothers adore her and I enjoy having a daughter so much. Thank you, God, for this gift.

Nora with her Manga

First train ride

First trip to the beach

Nora at 22 months, me at 22 weeks pregnant.

Exploring Hurricane Creek

Giving Daddy pats

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Baby boy is still doing well but his anemia continues to worsen gradually. His MCA scan this week (27w 2d) was the highest it’s been, at 1.39. Dr. Trevett really thinks next week will be the week that baby needs his first IUT but I’m not so sure. We tentatively scheduled the IUT for Monday but will rescan this Thursday (tomorrow) to see how baby looks. If he’s getting close to the 1.5 cutoff we will plan to have the IUT on Monday. But if baby’s numbers look about the same we will cancel Monday’s IUT. We still can’t believe we’ve made it this far without a transfusion! Baby looked great on ultrasound and is estimated to weigh 2 lbs 11 oz. Here are a few pictures of him from the past couple of weeks:


And here I am at 27 weeks, 4 days pregnant.

We are still struggling to come up with a name for this miracle boy of ours. Most of the names we like are pretty weird (Liam, Asher, Lucy and Nora were all the most “normal” names on our list at the time.) There are a lot of names that we kind of like, but none that we love. Hopefully we will come up with the perfect name soon. We just started getting things ready at home for our boy since we are feeling more confident that we will actually get to bring him home alive. We live in a small, three bedroom house so it is going to be a tight squeeze but we couldn’t be happier to have to fit our FOUR kids into our cozy little house. I never thought we would be able to have four living children! I will do my best to update the blog after my ultrasound (and four hour drive home) tomorrow. Please pray that baby’s numbers aren’t any higher and he gets another week without a transfusion.

Slightly Anemic

I’m now 25 weeks and 3 days pregnant and the baby is still doing well (poor little guy still doesn’t have a name though!) We are so very grateful to have made it this far without needing an IUT. My next appointment is on Monday when I’m 26 weeks and 2 days. At 26 weeks Nora was having her second intrauterine blood transfusion. Here are baby boy’s MCA scan numbers over the past few weeks:

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You can see that his numbers have gradually increased over the weeks but he is still staying well under the 1.5 cutoff. Right now he is probably slightly anemic but there are no other signs of trouble on his ultrasounds. His heart looks beautiful. Actually, all of his organs look beautiful (such a blessing) and there is no extra fluid anywhere. He is measuring about two weeks ahead and weighs almost 2 pounds. We are thrilled to see our boy do so well and we give God all the praise for this miracle.

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In the past couple of weeks we have finally started explaining to Nora that there is a baby brother in Mommy’s belly and that one day he will come home to stay. This is a huge leap of faith for me because we don’t actually know if he will come home or go to heaven, but lately we’ve been feeling more hopeful than ever that he will survive, so we let the secret out. I’m also HUGE and Nora was starting to wonder what was going on with Mommy’s weird body. I just remember so vividly trying to explain to 2 year old Asher that baby Lucy wasn’t going to come home like we had said and that she had gone to heaven instead. It was terrible and it was so hard for him to wrap his little mind around the concept. I wanted to protect Nora from feeling that loss if her baby brother died so I waited much longer to tell her about the pregnancy than the boys (they knew as soon as I came home with a permacath sticking out of my chest at 10 weeks.) Nora is SO excited about her baby brother and talks about all the things she wants to do with him. In fact, we sat on my bed two nights ago, just Nora and me, having a real heart to heart conversation for the first time. We talked all about the baby and the fun things she would get to do with him once he gets here. It was so special because I felt this sweet connection to my daughter, like we were friends, and it’s something I’ve been looking forward to ever since I found out that I would have a daughter I could keep. Anyway, Nora told me she was going to rock her baby brother, sing to him (she sang me the song she made up for him), put his socks and hat on him, give him milk, give him a bath and when he falls asleep she will shout, “Wake up beebee!” so he can be awake with her (we’ll have to work on that last part.) She also said we should name him “Beebee Callum.” Goodness, she has a lot of ideas and plans for a baby she hasn’t even met yet. With each adorable proclamation of hers my heart trembled and I prayed, “Oh Lord, let it be. Let her hold him and sing her special song to him and even wake him up when hes’ napping, I don’t mind. Please let us experience life with our boy.”

Please continue to pray for our son, that God would strengthen him in this fight for life and protect him from harm. Please pray that Nora will get to be a big sister and meet her baby brother alive one day this fall. I will try to do a better job of updating the blog more frequently. Usually, no news is good news, though!

Almost Viable!

I’m am now 21 weeks and 5 days pregnant. We are getting so close to viability! Of course, just because a baby is viable (could possibly survive outside of the womb) it doesn’t mean he will survive if born, but at least there is a chance. One of the hardest things about losing Lucy was knowing exactly what the problem was (my antibodies were attacking her and she was extremely anemic) and knowing that if we could just get her away from my body she would be ok, but she was still too young to survive outside of the womb by a few short weeks. So we watched her die and the doctors just stood there. Once I get to viability with this baby boy I will feel a huge weight lifted just knowing that he COULD possibly survive if the same scenario happened. I think 21 weeks is the earliest a baby has ever survived outside of the womb. Different hospitals and different states have their own viability cut offs when it comes to gestational age. Surprisingly, at the hospital in Houston where Nora was treated and born (Children’s Memorial Hermann Hospital) they don’t consider a baby viable until 24 weeks, even though many babies have survived earlier than 24 weeks. At Northside Hospital in Atlanta, where this baby will probably be born, they consider a baby viable at 22 weeks and older. This means that this baby will be considered viable by the time he needs his first intrauterine transfusion, which is what I’ve been praying and hoping for.

Speaking of this baby, he is still doing well! I completed the extra rounds of treatments and baby boy looked great at his ultrasound last week after all of my treatments were done. His MoM at 20 weeks was 1.19 and Nora’s MoM at 20 weeks was 1.47 so it seems like this boy is doing even better than Nora was at this stage. Apparently the extra plasmapheresis and IVIG has helped keep his anemia down. He is still super active at every ultrasound and there are no signs of hydrops or distress. Heart function is beautiful, no excess fluid, etc. Here is a quick video of him stretching out and breathing/swallowing at his ultrasound last week:


Yesterday I had my 21 week scan and baby still looked good but his numbers were up just a little bit. His MoM was 1.25 which is still in the good zone but getting closer to that 1.5 cut off. He showed no signs of anemia so hopefully next week his numbers will still be low. This week’s higher number could just be normal fluctuation or it could be the beginning of an upward trend. Baby boy now weighs one pound and two ounces so he’s measuring a little bit ahead, which is great! The bigger the baby, the easier an intrauterine blood transfusion is for the doctors to perform. Please continue to pray for our sweet boy. Even though he is doing great at the moment he still has a long road ahead of him to survive. He is being attacked by my antibodies and will eventually need blood tranfusions before birth, which are dangerous. Please pray that he can hold off a few more weeks before needing a transfusion. Thanks again for all of your support and prayers!

Here are a few pictures from the past couple of weeks:

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Me and baby at 19 and a half weeks, the same gestation that I lost my baby Lucy. I was at the hematologist in this picture waiting for a check up. My normal doctor wasn’t in town so I had a different doctor that day. He said the night before, he had researched and studied my condition for four hours because he didn’t know much about it and wanted to be prepared. Just a reminder of how rare this disorder is (and how awesome my doctors are!)

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Tiny fist pump

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Nora Juliet is ready to be a big sister!