January 18th, 2023
Today we had our follow-up appointment to do an ultrasound and discuss the MRI findings. Juniper's observed-to-expected ratio from the MRI is showing 16.6% (lung volume) which is a little less than we had originally thought and not very much has changed. She is still considered in the high-risk category and with the amount of liver up into the chest she is considered a severe case of CDH. Juniper is in the 11th percentile so she is growing but still on the small side. (This tells us how Juniper's growth compares to the national survey) Part of her being on the smaller side is due to her organs not being in the right place but her other structures are developing normally. The concern with Juniper being on the smaller side is that she needs to be a certain weight to be considered an ECMO (Extracorporeal Membrane Oxygen) candidate if she ends up needing that type of life support. As long as she continues to grow like she is we should reach and pass the weight she will be required to achieve to be a candidate. So far she is doing well and as long as she doesn't dip below the 10th percentile we don't have to worry. While Juniper is still at higher risk for needing ECMO, they will still try to avoid this option if possible. However, we still want her to have that option if she needs it because it can and does save CDH babies' lives. In a few weeks, we will need to do none-stress tests (NST) every week to monitor how Juniper is doing to make sure she is doing well enough to continue to term. NST is just a heart rate tracing that takes about 20-30 minutes that lets the doctors know she is doing okay and no intervention is needed. We will have another ultrasound in three weeks to continue tracking her growth and have another fetal echocardiogram to check the structure they weren't able to see last time. At our next follow-up appointment in three weeks, we will discuss the birth plan, possibly having an induction, and what that will look like. I am still able to deliver her vaginally as long as there are no other complications and have her without medication. This is not a situation where they recommend c-sections as long as the baby is tolerating labor well. Juniper will be delivered by a high-risk OB at about 39 weeks with likely induction. They want Juniper to develop and grow as much as she can so that we don't have the complications of prematurity on top of CDH. During the ultrasound today they did measure the amniotic fluid which is a little on the higher side which can cause complications but isn't much of a concern at this point. When there is too much fluid, this is called polyhydramnios. Sometimes when there is too much fluid build-up in the uterus this can cause pre-term labor. Normal fluid should measure at 25, right now I am measuring at 35 so this will also be something that is monitored closely. If that number increases to the 40s it will become more of a concern. This will be monitored at the same time as the NST.
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We also met with the surgeon today who explained that part of the process to us and I will update the blog regarding that discussion at a later date.
