It has been nearly 5 days since I've landed in Philly (really Camden, NJ since that is where I'm boarding). As usual, it has been a whirlwind of a week. One would think I would get used to this rollercoaster ride experience of carrying a child with an unknown syndrome, but I am not numb to it yet and they certainly catch me by surprise when something new or unexpected is thrown my way. Let me explain... My sister, Gina, and I went to CHOP for an appointment with the maternal fetal medicine (MFM) Dr. on Tuesday. This was just for a routine growth sonogram to check the baby's development and amniotic fluid levels. The Dr. said my ears should have been ringing lately because Ella has been the talk of the hospital. There has been great debate over whether or not to do the Exit procedure as a mode of delivery. Though they initially thought it was not necessary, the airway team seemed to have second thoughts. Their argument is that it is the most controlled situation, since the baby will be oxygenated through me while they are trying to access the airway. They also are worried that if I go into spontaneous labor that they can't guarantee that the right docs will be available to help her. On the other side, are the OBs/MFMs and the hospital's chief of surgery who feel they will have sufficient time to access the airway and that an Exit is not necessary. Each team is coming from different perspectives, with the airway team considering doing what's best for the baby and the OBs considering what's least risky for the mother. And of course, my husband and family were adamantly opposed to the Exit since it is a rare procedure with higher chances of blood loss, hysterectomy, and morbidity. This put me in a most difficult position because I want to do everything I can to protect Ella, but I also have to consider the feelings of my husband and family.
I would be lying if I said I wasn't scared...if we don't do the Exit there's a chance that the baby will suffer the effects of oxygen loss and if we do it there's a chance that I will suffer the effects of blood loss. After our meeting on Tuesday, I had this completely unsettling feeling. Nothing had changed with the baby in the last 4 weeks for them to turn the tables on me. Ella grew significantly (now weighing approx. 4lbs) and the amniotic fluids were normal, suggesting that she's still swallowing. So we met with the airway and OB docs again yesterday. I expressed my concerns much more clearly this time, as I was no longer caught off guard and could gather my thoughts and articulate myself in a better fashion. It was obvious that the two teams were on different pages. It was also obvious that one of the major reasons that this was even being discussed was that the ENTs were not able to guarantee that their airway experts would be available upon normal delivery. We came to a compromise - if an Exit is the most controlled situation and a vaginal delivery the least, a cesarean was somewhere in the middle.
On Thursday, August 6th, I will be having my baby via c-section. I am praying to God that they will get her breathing right away and that the worst case scenario is that they will have to trach her. There are so many unknowns with this child, however, one thing we do know is that we already love her dearly and we cannot wait for her arrival. In less than two weeks, we will meet her for the first time. The waiting and anticipation will be over with and we will just begin to know better what her issues are. Her birthday will be the first day of a very long journey, equally beautiful and challenging I am sure. I just ask that you continue to keep this little girl in your heart, praying to whomever your God that her delivery goes smoothly and that she has a chance at having a good quality life. Also, Erik, myself, and my family are not nearly as strong as everyone thinks we are. In fact, there are many of days that I feel like buckling, like I cannot handle one more stitch of bad news. So we just ask that you pray for our strength and courage to get through this adversity. We still have faith that a miracle can happen, that God can heal baby Ella. If that is not His will we will cherish her and love her with all of our hearts just the same.