Ryker

Having your first baby is a journey.  Everything is new, exciting, stressful, and sometimes hard.  With my second baby I was more nervous in the beginning about the birth, because I knew what to expect.  Ryker was born Wednesday 9/7/16.  Right away he was unlike his older sister.  The labor was different; contractions were easier, but the delivery was so painful (maybe because his head was not molding?)  After we were in our room, I was looking him over, he had a bunch of ridges on his head.  I even googled it at the time; finding that sometimes the skull is squished in utero.

When my mother in law saw him the first time (former RN in neonatal) she commented on how round his skull was, similar to a c section baby.  She visited us when were at home and continued to exam his skull, I could see her doing so.  It bothered me enough to mention that I didn’t feel his soft spots.  She asked how his exam was by the neonatologist, and doctor at his 1 week visit. They said he was good, no concerns.  She suggested I check with the pediatrician at his 1month appointment, which was almost a month away.

When we went in at a month I had it in my notes to ask about, but by this point I wasn’t all that concerned anymore.  Except his head was growing with a “ridge” in the back, almost like a point.

I mentioned to the doctor, that I couldn’t feel the soft spots.  She examined him and said;  that what he had was rare, he would need to have skull surgery, and that she needed to look up what the exact name for the type he had.  What?  Skull Surgery?  Then she left the room.

It was just me and my little man. Waiting. For what I wasn’t sure at this point.  I did some internet searching while waiting.  Finally she came into the room with some answers, not many but a start.   He needed a CT, then he would have an appointment with a neurosurgeon, and plastics.

It was confirmed that he had Sagittal Craniosynostosis.  We waited 2 weeks and saw the plastic and neurosurgeon.   They agreed that 4 months of age was the right time to correct this.  He was going to have a cranio vault remodeling.  We had considered going to a bigger hospital, but were impressed and wanted to stay close to home so we went to our hometown clinic/hospital.

Waiting was the hardest part.  Trying to keep him healthy, so everything could go as planned was stressful.  My husband donated blood to be used for the transfusion he would need.  We planned care for our daughter, and tried to act like a normal happy family.  Meanwhile so concerned underneath.

Tuesday January 17th, 2017.  Surgery day.  We checked in early, I felt so bad about not feeding him, he was doing well though.  They got all the vitals, we saw both surgeons, thankfully they were waiting to start IV’s and meds until the OR, and then the nurse came to take him back. I handed my baby boy away.  I cried the whole way to the waiting room.  I knew that he would be alright, but it was hard to let go of the control.

We received updates every hour, his surgery was about 3 hours and he was back in PICU by noon.  The doctors said his head was already shorter and more normal shaped.  When we went up to see him, I knew this was going to be the hard part.

He was extubated and sleeping.  His swelling was minimal, honestly he looked peaceful. After a few hours he nursed a little. Thank goodness (this was one thing I was very concerned with).  That night things changed.  Pain. He was in so much pain, heartrate was over 200.  He refused to eat.  I held him and all his tubes, drains, lines, all night.  Neither of us slept.  The next morning they determined he needed more pain meds and was given morphine.  He relaxed a bit then.  My husband stayed that night because he still refused to nurse (this devastated me).  He would take minimal amounts on the bottle.  He ended up having another transfusion because his platelets were too low.

He didn’t even want to be touched and swelling was increased by day 2 post op.  I thought we would just cuddle and nurse our way through recovery, boy was I wrong.  On day 3 we were moved to the PEDS unit.  We had an amazing older nurse who removed his IV and said that may be the reason he doesn’t want to nurse.  Sure enough 1 hour later he was hungry!  We stayed that night and went home the next afternoon.

The next week was hard with sleeping and eating for him, but each day he improved.  He healed up wonderfully.  His head is not perfect, but who is?

One year later we have a wonderful little boy.  It all worked out. It was the hardest thing so far for us to go through with our kids.  Have faith.  We are thankful for the support and stories from Cranio Care Bears.   It was helpful to read all of them and get us through this tough time.

Happy 1st Cranioversary Ryker Patrick.  1.17.2018