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-
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.
Oh my sweet, strong friend, that is a lot to handle in a short time period. I started crying reading the part about the Lucy appointment. I had an appointment like that for Luke and it was very hard and a cried a lot before during and after and had a lot of anxiety, but I think it did help. I asked a million questions and the doctor was very nice and patient. My questions were mostly about what I could’ve done wrong however. I didn’t have a reason to show them things they may have missed like you do. That is intimidating, but yes, vital as you say. My appointment was at my high-risk doctor practice, which was huge, and was with a doctor I had never met before, which was helpful. I’m still kind of angry at the doctors I saw throughout the pregnancy who handled his loss so poorly. Eventually I would like to talk to them about how they could handle such situations better if I’m ever brace enough.
And yes, reading the autopsy was excruciating, but I needed to do it. It was comforting to me to repeatedly read that he was “normal” in the organs and areas tested. I liked reading (in medical jargon which I didn’t always understand) that my baby boy was whole and complete. It is a horrible thing to have to do though. I will be praying for peace as you do that. Her body is beautiful and whole now! You will be hugging her soon!
I will be praying for your appointments also. And all of your long commutes while still also handling 3 at home! I don’t know how you do it all, friend. I feel overwhelmed with just Sam at times. I wish I could be there to ride along with you to Atlanta. Maybe someday. I love you and will be lifting you up to our Father who already has the perfect answers and plans for you.
Praying that you get some much needed answers and the assurance that Lucy did not die in vain.
Prying for you and your family. Stay strong 💪