She Will Always Be Our Second Baby

We had our first visit with CHOP today bright and early at 6:30am. We arrived, got registered and were called back for an extensive ultrasound (3 hours long!). All of Waverly’s bones were measured, every bone in her body. All of her organs, all of her blood flow, every ounce of her being was measured. Literally, they did not leave one bit of her body unmeasured. We then went for a fetal echocardiogram which was about 20-30 minutes long. We then met with a wonderful genetic counselor, Erica. We went over our family history and talked about osteogenesis imperfecta. She answered any genetic questions we had and provided much reassurance. Lastly, we met with a maternal fetal medicine doctor, a student and our nurse coordinator. We all sat down and talked about the findings of the day. (They also asked us if we knew the gender and if we had a name picked out... how nice is that??). Anyways, our doctor went over the types of OI and told us based off their findings it’s type II. All of her long bones are measuring 6-11 weeks behind, her chest circumference is < 2.5% percentile. Her skull is very soft and can easily be compressed by the ultrasound probe. She has many fractures throughout her body, it’s hard to tell which are healed and which are not. Her rib cage is highly misshaped due to the many fractures. All of her long bones appear very bowed and quite zig-zag like due to the fractures. Her legs are in the frog position, and we have yet to see them move. She does move her arms quite freely though. Her head, abdominal circumference and heart (along with other organs) are all measuring right on track.
We talked about delivery options. We had some relief when she said that stillborn is not likely (can’t rule it out but it’s unlikely it will happen). Many babies are born and then the rest is like a crystal ball. They can live for mere seconds or hours. The huge concern is breathing, due to the small chest cavity and how the heart is taking up more than 60% of that space, leaves little room for the lungs to expand for breathing.
Natural delivery is still the ideal route, however if she is not in the right position we will be doing a c-section.
We are at risk for polyhydramnios and malpresentation which can factor into delivery.
She believes we can go full term, but can always schedule an induction date due to the drive to CHOP and upcoming summer traffic.
All of this we had the last two months to prepare for. Of course, you will never be prepared to be in an experience like this... but this wasn’t new news that we were receiving. We had time to do our research and really grasp what was happening.
We will be doing all further ultrasounds at CHOP and prenatal care locally. Next appointment we will be doing an ultrasound, a tour, along with meeting with their palliative team and making our birth plan and our wishes for care.
Jim and I are beyond impressed with CHOP and the compassion that they shared with us. They reminded us that no matter how long Waverly is here, she will always be our daughter, she will always be our second baby.