We met with Leah's neurosurgeon, Dr. Ian Heger, on March 10. It was this appt. that we brought Leah's cat scan with us. He viewed her scan before meeting with us. The good news is that it was confirmed that Leah only has ONE suture fused! This is a huge blessing as there are more issues when more than one suture is closed. He also told us that Leah's brain was "perfect." In other words she has no intracranial pressure and his opinion was that she looked great in that capacity!
Dr. Heger has been doing this surgery for awhile now and seemed very confident and skilled. We had many questions for him about the surgery. One thing that was a huge source of comfort is that Leah will be operated on by a "craniofacial team" which means that they work together on a regular basis. Her team will consist of her 2 surgeons (Dr. Heger, pediatric neurosurgeon and Dr. Stelnicki, pediatric plastic surgeon), a pediatric anesthesiologist, pediatric nurses etc. Dr. Heger and Dr. Stelnicki have been performing surgery together for 5 years and we have been told that there are many, many benefits to having a craniofacial team! They are like a well-oiled machine and all know what they are doing and what to expect. We are grateful our pediatrician led us to the right surgeons and that Leah will have the benefit of a craniofacial team. Some babies and families have to fly hundreds or thousands of miles away for the right specialists.
Leah's surgery will last 4-5 hours. The first 1.5 hrs are surgery prep...putting her under, etc. Then they will perform the operation which entails making 2 small incisions on each side of her forehead. They will then use an "endoscope" to see what they are doing as they cut or release the fused suture. They will then reshape her skull bones using special tools and will doing a lot of work reconstructing her forehead and eye socket.
The nurse will be making phone calls to us while we are in the waiting room and give as hourly updates. And we will be able to see Leah about 45 minutes after surgery is completed. She will spend the first 24 hrs in the pediatric intensive care unit. They said it is very likely she will need a blood transfusion.
Leah will be in the hospital for 4-5 days after her surgery. We will be staying with her and have free lodging at the "Conine Clubhouse (listed in link section)." She will be on morphine for the first 24 hours post-op and then gradually weaned to tylenol. We are told that there will be substantial swelling after the surgery and her eyes may very well swell shut for a couple days. It is all very scary but we have met very reassuring "cranio" parents online whose babies have already had the surgery and come through fine. We are spending these next 3.5 weeks with equal amounts of anticipation and dread. We dread what they are doing to her but at the same time we are anxious to get to the "other side" of the operation.
Leah will then be fitted with a molding band or helmet that she will have to wear for 23 hours out of everyday. We are told that she will be in this helmet for 3-6 months to help mold her head as it continues to grow. We were blessed to find out that our health insurance will cover the costs of these helmets (about $3,000 each and she would need 2-3 as her head will continue to grow); but only because Leah's condition is associated with a surgery and it is considered part of her treatment. This is a huge blessing since Leah's surgery is going to be a huge out of pocket expense for us! Though we have health insurance we have a very high deductible to meet and then still have to pay the remaining 20% of the surgery, hospital and all related costs. And since we are still paying on the medical bills for her birth the timing couldn't be worse. Prayer in this area would be greatly appreciated!
Despite all the stress we are under right now we are still managing to find JOY in the journey! God has used this situation to bring our family closer than ever before. Things of little importance quickly fade to the background as we cling to what is important in life....our faith, our family and our friends! While Leah's deformity was certainly a surprise to us, we know that nothing is a surprise to God...He knows all and He made her just the way she is. She is in His hands and we trust Him completely!