Caroline's MRI

Tuesday, February 12, 2019 was an important day getting to know Caroline and her conditions. Jessica started with an early afternoon check-in at Nationwide Children's Hospital in downtown Columbus, and headed to their MRI room. After the test Tom joined Jessica in the lobby for an ice cream sundae-- Jessica's reward for being cooped up in a tiny hole for over an hour!

This second part of the afternoon was our first in-person meeting with the prenatal hospice team. Consisting of a Social Worker, Dr Amy Schlegel (a neonatologist), Becky (nurse coordinator), and someone from the pastoral care team. The team started by asking us to talk about our experience to date and some of the other support people on this journey.

We discussed their experiences in these situations, and they shared their professional opinion that  honoring Caroline's life and legacy is one of the most valuable ways for us to successfully make it through such a challenging experience. They frequently see individuals and couples in denial, and briefly shared how damaging that can be. The team loved our therapist's approach to telling our children, and offered some additional suggestions and insights, including some additional children's  books.

Ultimately, we looked at the MRI images, which were some of the clearest pictures we have to date. Caroline was snug in her womb, head down, and sucking her thumb - happy as a clam. There were no signs that she was in pain or suffering.



Turning to the actual issues, her large kidneys, cysts and all, were readily visible on the first images. As they scrolled through, we could also see her eyes and other features. Dr. Schlegel also showed us the shape of her head and we discussed what that could look like after birth.

Among the toughest news was to share about her underdeveloped lungs, and the impacts the brain development may have. Dr. Schlegel noted that Caroline developed a brain stem, which is the part that rhythmically sends the messages to breathe. However, with lungs that small, we're not able to tell until she's born how much oxygen she'll be able to assimilate into her blood. She also lacks a normal amount of amniotic fluid (which we knew from previous ultrasounds) which is needed to "practice" breathing in the womb and develop the lungs.

Dr. Schlegel also talked about how pain mitigation in newborns is administered through the nasal passages - if Caroline shows signs of distress right after birth, needles are not necessary to provide her comfort and how any administering of medication will be our decision.  We had some tough conversations on how short that time in the room could be although of course these are all just estimates and in the end up to Caroline.  We also started discussing, our options and the basic understandings about what will happen during our time with Caroline. In the end we are in the drivers seat and will be reflecting more about how that will look in the coming weeks. 


 As our team grows, and our prayer warriors still fight the good fight, we continue to care for our Caroline in the best ways we know how.  For today we enjoyed pictures of our precious baby girl--who is just so loved!