Part 2

Ken was out of town the 3 days when we first found out about Leah's condition. I was 2 weeks postpartum so I was very emotionally vulnerable. I had a hard couple of days and I just couldn't believe this was happening to us! Thankfully we have older girls and that helps to serve as a huge distraction. Life must go on. I called and scheduled our appt. with Dr. Stelnicki (our craniofacial doctor otherwise known as a plastic surgeon) for February 14 which was the soonest we could get in. Ken scheduled the time off work so he could go with me.

Even though the pediatrician had already told us the radiologist report said "craniosynostosis" it wasn't an official diagnosis until we saw a plastic surgeon or neurosurgeon with the x-rays. I researched during the 10 day wait and learned all about craniosynostosis as well as plagiocephaly (which is a misshapen head that can be fixed without surgery) hoping that would be our diagnosis. Of course many things I saw and read online confirmed it would be cranio. I saw pictures of other babies that looked exactly like Leah. Basically by the time we went to see Dr. Stelnicki I had already figured out which suture had fused.

After the initial shock that Leah may need surgery wore off, we tried to live life as normally as possible during our 10 day wait. We knew that if surgery were part of God's plan He would sustain us through this time and that He would take care of Leah!

Ken and I drove down to the appt. on Valentine's Day with Leah while my mom stayed home with our older girls. We were calm and enjoyed our time together. The whole drive down we discussed the situation and hoped we would get a diagnosis that would not require surgery. As soon as Dr. Stelnicki walked in he could tell with 100% certainty that Leah had coronal craniosynostosis. He did have x-rays to confirm and he looked at them, but he was able to tell just by looking at her. The first words out of my mouth were, "Oh no, I was hoping it was plagio." His eyes were warm and kind as he gently said no. Though we were expecting that diagnosis it was still a bit of a surprise. All the research had prepared me and I was thankful for that, but nothing can really prepare you to hear your infant is going to need surgery on her skull!

He said her case was moderate to severe and told us we had 2 options but both entailed surgery. I had already read about both surgeries online but was not sure if the "minimally-invasive endoscopic" method would be available to us. They have to be under 4 months of age at the time of surgery (which Leah will be), but we were not sure which sutures could be fixed this way. Dr. Stelnicki spent a lot of time with us and never made us feel he was in a hurry. He answered all of our questions in a calm and reassuring manner. Even though this diagnosis was huge and scary to us, it was everyday "work" to him.

He told us that we didn't need to decide that day but if we were leaning toward the "endoscopic" method that we would want to walk out with a surgery date since time was of the essence. Leah was 4 wks old at the time of this appt. and she would need the surgery before 4 months if we went this route. He said we could always change it later. He was very thorough and sent us to get all our information and appts. scheduled with his surgery assistant. We were very impressed with us office as they were very organized and tried to take all the other stresses off the parent.
Ken and I walked out with a surgery date of April 14. Our friends and family had been praying for us that day and I know it helped tremendously. We were able to remain calm and strong, ask the right questions and remember the visit with clarity later.

In my next post I'll explain craniosynostosis in detail.