CHOP is an amazing hospital for birth defects, however delivering there may not be practical for our family. Not only would I have to relocate to Philadelphia at thirty-five weeks to be monitored closely before delivery, but our stay after Caleb's birth could be several weeks to months since he will have to fully recover from his extensive surgeries and be strong enough to go home. Although we will have unconditional support from our family and friends, work commitments and the distance to CHOP would prevent them from visiting often. Most importantly, Brody will be starting kindergarden in August and we couldn't possibly imagine him going through this journey without our support. Especially during this time, just being able to see his smile and receive his endless hugs and kisses will be what gets us through the most difficult time in our lives. Our only hope is that the doctors at Hopkins will be able to provide the same care (if not better) for our baby boy's CDH as CHOP.
Our day at Hopkins will be very similar to that as CHOP and we had a long day full of appointments. To help get some clarification, we prepared a list of questions for each doctor. The ultrasound and meeting with the perinatologist, a doctor who specializes in the care of the fetus in complicated, high risk pregnancies, confirmed similar results to those we received at CHOP. Following that appointment, we met with one of the surgeons in the Division of Pediatric Surgery that would be responsible for performing the complex surgeries needed to repair Caleb's CDH, which will occur as early as three days of life. An incision will be made in his rib cage and the organs in his chest will be guided back down into the abdomen. Also, the hole in his diaphragm will be closed to create space and allow his lungs to continue to grow through early childhood. To put Caleb's birth defect into perspective, Hopkins performs about 15-20 CDH surgeries a year. Finally, we met with a Neonatologist and took a tour of the neonatal intensive-care unit (NICU), which is where Caleb will go immediately after birth to receive specialized care.
Still, we left Hopkins today with three major concerns and questions no one would be able to answer. How would Brody handle the birth of his little brother and what impact would Caleb's complicated diagnosis have on him since we as parents would be at the hospital many days and nights caring for his sick brother? Since every CDH story is different, we did not truly know what Caleb would endure during his first days, weeks, months, and years and what his quality of life would be like growing up. Lastly, we are unsure of the financial burden this will place on our family and can only hope that we can afford the extensive medical bills while also continuing to pay our mortgage and other bills.
One huge relief today was coming to the conclusion that if we decide to proceed with the pregnancy, we would feel 100% comfortable with delivering at Hopkins as we know Caleb will receive the best care possible. In the days ahead, we must make what seems like an impossible decision...