Monthly Archives: August 2017

Up Next Week: 3rd IUT and a Big Appointment

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I had my 36th ultrasound yesterday to check on baby one last time before the IUT on Monday and to check his weight. The weight estimate is very important because the doctors use it to decide how much sedative/paralytic to give the baby before the procedure, and how much donor blood to give him during the transfusion. As usual, he’s measuring ahead (which we love!) and weighed 4lbs 10 oz at 31 weeks 6 days. I think that is about the average weight of a 34 week baby. The bigger he is, the easier the transfusion is for Dr. Trevett and the better off baby will be when he is delivered early. There were no signs of hydrops or distress during the ultrasound but baby was definitely the stillest he’s ever been and his MoMs ranged from 1.5-1.72 so that made me anxious. They drew my blood for the normal pre-IUT blood work and then I was on my way home to Alabama, just barely missing Atlanta rush hour traffic. About and hour later I got a call from the hospital. They told me I needed to turn around and come back because they had just received my blood results and there was a problem. It looked like I had developed another antibody, possibly the Le(a) antibody, which I know absolutely nothing about. They needed to draw more blood and do more tests to clarify what was going on. So, I turned back around, drove back to the hospital and had my blood drawn again. I won’t know more about this until Monday but I’m hoping that I didn’t really develop another antibody. The reason they do blood work before every IUT is because they have to check to make sure I haven’t developed any new antibodies. They have to carefully match the donor blood to my blood before every IUT because if they accidentally gave the baby blood that doesn’t match my antibodies, my body could destroy the baby’s blood right after they give it to him. Anyway, it was a long day and I’m thankful to be home with a day to relax with my family. Well, you know, do dishes, cook meals, do four loads of laundry, pack for Atlanta, clean the house, diffuse one thousand toddler melt downs and all of the other things a “relaxing” day with three young children entails. Tomorrow, my mom, Nora and I will drive back to Atlanta and stay through Tuesday for the IUT. Please pray that the baby is safe until then and that the procedure goes well. It’s stressful to feel his kicks slow down as he gets more anemic every day leading up to the IUT. Here’s our sweet boy during yesterday’s ultrasound-

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I also would love for you to pray for a very important appointment I have coming up next week. The appointment actually doesn’t involve my current pregnancy. It is about Lucy. I’ve been wanting to make this appointment for about four years now and I finally worked up the courage a few weeks ago to schedule it. The date has crept up on me and now it’s just a few days away, August 30th. Even though I’ve been wanting and needing to have this appointment since Lucy died, I’ve also been dreading it.

The appointment is at UAB Hospital (in Birmingham) with the head of the MFM department to discuss everything that happened with Lucy. We will also go over all of the test results that I never saw like her autopsy, my placenta analysis, amnio results, etc. I have a lot of questions that I’ve never been able to ask since I never had this appointment after Lucy died. Usually, after a baby is stillborn the doctors set up a “preconception appointment” for several weeks later to discuss what happened with the baby and to go over any test results and questions the parents might have. They also discuss future pregnancies and what the treatment or monitoring would look like if the parents did want to try for another baby (thankfully we won’t be discussing that.) I had scheduled my preconception appointment at UAB after Lucy died, but one of the main MFMs called me about a month after we lost her and told me I could cancel the appointment. He said he had seen my placenta analysis report and decided that I had had a fetal maternal hemorrhage which caused Lucy’s death (other doctors disagree.) He thought we could go on to have another baby naturally so he decided there was no need to have my preconception appointment. I was so overjoyed by this news that I cancelled my preconception appointment, which I now know was a really bad decision. I never got to ask the MFMs about the treatment and lack of monitoring I received during my pregnancy with Lucy (that contributed to her death.) I never saw her autopsy results, or any of the test results or anything. As far as I know, no one was held accountable for what happened or was even notified that a baby had slipped through the cracks left gaping by their hospital’s outdated protocols. I never got to ask them why they “don’t change protocol just because of one baby.” I am curious to know how many babies need to die before they decide that their protocols might need to be updated. Now I just sound bitter, which is not what I want. I hope to get some answers, to better understand the decisions the doctors made, to forgive the mistakes that were made and to make sure that this doesn’t happen to any other babies in Alabama.

Preparing for this appointment and writing down my questions has been emotionally difficult to say the least, but I feel like I have to have this appointment to get a little bit of closure regarding my experience at UAB. I am dreading the thought of going over her autopsy, thinking about my precious baby being cut open. How can a mother bear those thoughts? But the weight and responsibility of protecting other babies whose mothers go to UAB for treatment weighs heavily on me. Nora and this baby boy on the way are my daily reminders of how Lucy’s story could have played out if only she had received the right treatment and monitoring. Please pray that God gives me the strength to get through this appointment and find some peace afterwards. Also pray that the MFM department is humble enough to learn from Lucy and that they change their protocols regarding management of isoimmunized pregnancies.

Two Down, Two To Go

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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. 

First IUT a Success

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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

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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 our Facebook group 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!