Severan: 2 Weeks+ Old!

We have had a wonderful two weeks (plus a few days) with our sweet, content and beautiful baby boy.  We brought Sev home on Wednesday January 15th when he was just two days old.  Mimi came from Texas and took care of us for over a week while we adjusted to being at home and getting the kids back to their routines.  My mom arrived last Friday and has taken over as Chief Operation Officer of the Lyon home.  This transition would literally have been impossible without their support.

Hannah has nicknamed Severan "Little One" and I call him "Sweet Boy"... GG is having a hard time not calling him anything but "Mister" - - but we all know who that nickname belongs to!!!

Mister (Number 1!)

Both kids are enamored by their new brother.  Blaine is gentle and affectionate and wants to hold Sev constantly.  HG is a little more rough (I blame this on her age) and loves to fetch anything baby-related we need, help burp him and loves to touch him.

HG - World's Best Sister

Sev has been sleeping great at night - he's doing almost five and a half hour stretches now.  We do know he has a dairy intolerance though, so I have to cut out dairy and chocolate if Little One is not going to spend half his day vomiting up my breastmilk.  Ugh.  In fact, I had to cut out dairy with both Blaine and Hannah when they were breastfeeding.

At his ten day appointment with Dr. Miller he weighed 9 pounds, 1 ounce and was 22 inches long - so he's grown a considerable amount since birth.  Eating is NOT a problem for our boy.

And then there is the rest of the story...

Shortly after birth I was concerned about the placement of Severan's eyes (his face was not symmetrical) but I was told by the first pediatrician that came in, and all the nurses, that his head and face would assume a more normal appearance after a few days.  I knew this was normal for a vaginal birth, but after 24 hours and a second visit from two pediatricians - we were all very concerned that something was not right.  Not to mention he would only open his right eye for a few seconds at a time. At first everyone said it was from swelling but then it became apparent that this was not the case.  The day we were released from the hospital we were visited by the same pediatricians as the day prior and they recommended that we make an appointment with a pediatric ophthalmologist and craniofacial doctor in the next few days.  I made both appointments and we were seen within a week by both specialists.

It turns out that Severan has Craniosynostosis (kray-nee-o-sin-os-TOE-sis) - a birth defect in which one or more of the joints between the bones of the skull close prematurely, before the brain is fully formed (which doesn't happen until the teen years.)  This happens in 1 out of 2500-3000 births.  After a CAT scan, doctors were able to determine that Sev has Coronal Synostosis and Sagittal Synostosis.  This means that two of Sev's sutures closed prematurely, not just one.  This parent's guide, put together by The University of Michigan, is an excellent resource to get some more information.

Severan will have to have surgery to correct this problem.  A plastic surgeon and a neurosurgeon will perform the surgery and it will be done at the Denver Children's Hospital at 2.5-3 months of age.  Aside from this, SJ is a healthy and thriving baby and our primary goal leading up to surgery will be to keep him healthy.  We will have a pre-op appointment with his doctors on February 26th where they will discuss with us what kind of surgery they are considering.  They want to see the shape his head has taken before determining what they will do.

At first this was devastating news but God has really shown me that this is just part of Severan's unique journey. And like my dear friend Mary-Keith said, "His name is exotic and special - just like his journey."  I have faith that God will take care of the details and we are only responsible for a few things here - to love on our boy, pick a skilled surgeon, and pray, pray, pray!  And we will do just that.

    

I'll update as much as I can.  It's pretty busy around here now! :)