Well, we got all moved into our place in Cincinnati. The one week we had no appointments was the week we were able to move; perfect timing! We had a busy week of unpacking, and then it was back to appointments.
We saw cardiology and gastroenterology this week. Hannah is doing really well! She’s growing and gaining plenty of weight. She has an upper GI study coming up to try and find the cause of her vomiting. The doctor isn’t very concerned, but wants to rule out a couple things. Her cardiology appointment was routine. This was our first appointment with her new cardiologist. The whole team is awesome! Everyone is so friendly and knowledgeable. I feel so confident that Hannah is in the best hands possible. We have a follow up appointment in four weeks, and will continue the oxygen at night and monitoring her sats at home until her surgery.
That leads me to the biggest news we got this week: we have a surgery date! Hannah will be having her open heart surgery on Friday, August 11th. We will go into the hospital on August 10th at 8:00 AM for 4-5 hours of pre-op testing. They will let us know on the 10th what time her surgery will be. While it’s a relief to have a surgery date, we just anxiously wait now. Having a date makes it all so much more real, and reality is terrifying. I know it is in God’s hands and he is sovereign over this, along with everything else, but when it comes to opening your baby’s chest and stopping her heart, it’s very difficult to not worry.
She will be having multiple structures repaired during her surgery. Her ASD (atrial septal defect) and VSD (ventricular septal defect) will both be patched, her stents will be removed, and her mitral and pulmonary valves will be patched. In theory, her heart will function normally, with minor leakage from the valves, and she won’t need to have another surgery until she is in her early 20’s. This surgery would be to replace the pulmonary patch with a valve. There is a small chance her mitral valve will need patched again in 2-3 years, but this only happens in about 10% of cases. There are a multitude of things that could go wrong during the surgery, but all of them are extremely rare, and Dr. Morales has never had anything go seriously wrong during one of his procedures.
Hannah also has her early intervention appointments, as well as her general pediatrician and ortho appointments. Keeping everything straight is a chore! We are seeing a new pediatrician on the 30th, and I am praying we like him so we don’t have to continue our search. One of the hardest things about moving to Cincinnati was leaving Hannah’s pediatrician and the doctor who delivered her. Both are excellent providers, whom I had been with for over 5 years. I’m hopeful we will be able to find providers we like as well down here.
So, we are now in another waiting period until her surgery. I doubt there will be any major changes to her care or health in the next two months, Lord willing. Prayers for peace during this time would be greatly coveted. I’m finding it hard to be patient and at peace. It’s hard to enjoy the time we have with something so big looming up ahead, but I don’t want to miss out on the next two months of Hannah’s life worrying about something out of my control. She is growing and changing so much every day, and I’m trying to take it all in moment by moment. She is definitely teaching me to enjoy each chapter of life.