Kamden – Metopic

kemdenMy son Kamden was born 04/30/15 at 38 weeks. He was 8lb 1oz and 19 inches long. We had a few scares during the pregnancy due to me having type 1 diabetes, but otherwise it was a normal pregnancy with a normal delivery. I knew right when I placed him on my chest that something was “off”. His eyes looked very close together and his forehead was pointed and pinched on the sides. I told my husband something looked wrong with his head but both my husband and the doctor said it was normal newborn molding and his head will even out over the next couple weeks.
Well, things kind of went down hill from there. His blood sugar was low and he couldn’t suck so he was being gavage fed while I tried to nurse. At 12 hours old he had respiratory distress and had to be transported to a larger hospital with a NICU. It was there that the neonatologist mentioned his head shape and a craniosynostosis diagnosis. Since his head was the least of their concerns at the time, they said to ask his pediatrician about it when he gets discharged. He was able to go home at 2 weeks old.
At his 2 week check up we met his pediatrician and asked about craniosynostosis. His head shape still was “odd” but they said to wait and we will recheck at the 2 month appointment since he had a large soft spot. Fast forward to the 2 month appointment. They acknowledged his head shape but wanted to “watch and wait” since he was developing normally otherwise. Of course by then I had spent a lot of time researching and I didn’t like that answer. I knew my insurance would probably require a referral but I wanted to find a doctor ASAP.
There wasn’t any specialists where we lived in Post Falls, ID and the closest were in Seattle at the children’s hospital there. I took a chance and called their craniofacial clinic to see if we could schedule my son and they said yes! He was seen at 2.5 months old and they confirmed just by looking at him that he did have metopic craniosynostosis and would need surgery. We opted for the “open” surgery so he wouldn’t have to wear a helmet and he would be older.
At 6 months old he was seen again by the craniofacial team and had a CT scan done which confirmed the diagnosis. We went home without a surgery date and in January 2016 we were finally told when surgery would be: March 29, 2016.
Fast forward again. 2 weeks before surgery, my husband got sick with a respiratory virus and we thought we were in the clear but 3 days before surgery Kamden started coughing. They decided to go ahead with surgery despite the cough and at 8 am on March 29 we handed him over to the anesthesiologist. At 3:30 pm we were paged and told he was out and did great but needed help waking up so I (mom) went back to talk to him and it helped a lot hearing my voice. His vital signs got a lot better. He looked so different with the drain, incision, and tubes I was a little scared and cried but I was happy at how things were. The doctors came and talked with us and said he had developed quite a lot of pressure on his brain that caused the skull to be very thin, but they were able to create a significant amount of room for the brain to grow.
The first night in the hospital was rough. I don’t think we were that sleepy since he was a newborn. He wanted to nurse a lot which I was okay with and the nurses said it was great. The next 2 days were all about cuddles, pain control, and nursing. On day 3 in the afternoon the doctors said he was ready to be discharged but since we were about 6 hours from home and his eyes were still swollen shut they allowed us to stay one more night. Day 4 his eyes opened the tiniest bit but it was enough for him to change his mood completely and he wanted to play! We left for home that morning and he did wonderfully.
He started playing right when we got in the door and actually started walking the next day! He started babbling and talking which he didn’t do before, walking, grasping toys, throwing toys, and feeding himself which are all things he never had done before! We are now about 3 months post op and he continues to make strides. I know all the room that was made for his brain to grow has allowed him to develop so much in this short time. He is so happy and has the silliest personality. His hair has already grown enough to hide the scar and most people don’t even know he ever went through such a major surgery. We are so grateful for the doctors and care he received!