The Norman Nest

Because of doing so well post surgery, we were able to leave the hospital after only one night and we have been at my (Jen's) parents house as Nathan continues to recover.  Overall, the hospital was a phenomenal experience.  They see probably 15-20 kids with Apert Syndrome a month, which means that for the first time in 9 months, Nathan's syndrome didn't feel like such an anomaly.  It feels like 9 months of adrenaline is starting to leave our bodies... The first few days the pain management was pretty intense and Nathan was sick coming off of the anesthesia.  All of that has been very much within the expected range of a "typical recovery" though and his doctors here and back home have made themselves very available to help us keep his pain under control.  He really turned a corner yesterday so we are hopeful to be heading home at the end of this week. Because Nathan's days are going so well (nights are still pretty rough) Jonny has been able to be wor...

Folks, Jonny here. We're keeping this short and sweet because we are still transitioning between the OR and the floor, but from every perspective, today went really well! An hour before surgery Nathan was quite happy - I think he knew fingers were in his future and was pretty stoked about it. Dr. Fearon said the separating of the fingers and toes and skin grafting went really well. And thankfully, coming off anesthesia went quite smoothly.   Nathan's casts look pretty intense covered in these bog foam rollers but that can't keep mom from holding him! Thanks so much for all of the support, encouragement, and prayers the last 12 hours! We have felt so loved!

There is no chapter in What to Expect the First Year that can prepare a mother’s heart for a moment like this.  These hands.  And these feet. These are the hands and feet that I began to love on March 3, 2013 when we found out I was pregnant.  These are the hands and feet that grew inside my body when I had know idea that a FGFR2 gene even existed, much less that one little mutation which caused an amino acid to be changed on one little position...  could change so much. These are the hands and feet that pushed and poked as they stretched out my body.  They tricked me, these hands and feet.  “This kid is all knees and elbows!” I would declare to his dad.  Never did I imagine that those “elbows” were the tips of these hands and feet. Try I might, I never could feel the flat palms of these hands or feet like I had with my first baby. These are the hands and feet that stole. my. breathe. in the longest seconds of my life. Thes...