Enjoying The Ride with Will

First, I have to just say, Praise God.  Our little boy, William, entered this world yesterday around 3:41 PM.  He weighed just under eight pounds and came out with the sweetest cries.  The high pitched squeaks were pure music to my soul.  My heart leapt with joy and tears of pure elation ran down my cheeks.  I have never in my life been more relieved to hear a sound.

Yesterday was a whirlwind.  The day went by incredibly fast and before I knew it, Will was here.  I'll save the delivery story for another day, but let's just say that he shocked all of the doctors when he came out crying and acting every part the "normal" baby.  Hours before he arrived, we were having conversations with doctors about whether to do chest compressions if he wasn't breathing and how they would bring him to us if he wasn't going to live.  To go from those dire conversations to hearing our sweet boy breathe was and is a true miracle and gift from God.

Will has been doing absolutely fantastic since his birth.  He hasn't needed any help breathing at all, he doesn't have any IVs, he's eating fairly well and he seems completely comfortable.  As most of you know, the most likely diagnosis prior to his birth was osteogenesis imperfecta.  This is what the doctors had prepared for and this morning we finally got a chance to do extensive x-rays on his body to look for healed or new fractures.  We waited on the results with much anticipation and shortly before lunch today we learned that ZERO fractures were present.  Will had surprised us again.  :)  The most concerning part of his x-ray was that his chest is indeed small.  You can even see this with the naked eye and it has a distinctive bell shape.  A couple of other funky bones were noted, but overall Will looks great.

I have been going through the past 24 hours in overdrive.  I have praised God for the miracle gift he gave to us in Will.  I went from thinking that my little boy may die to holding his sweet hand and giving him his first bath.  It has been a truly amazing time.  BUT, you know our Will.  He's always full of surprises, right?

This afternoon, he decided to give us a little surprise again.  I sit here tonight lacking the deep words I want to write with.  I want to find a unique way of sharing these thoughts with all of you.  BUT, I am too tired for the right words.  Maybe I'm too hopped up on pain meds for the right words, so I'll just get right to the point.

The rug has been ripped out from underneath me again.  I spent this afternoon allowing myself to finally relax and breathe deeply.  I thought Will was out of the woods and had convinced myself that he probably just has a super mild form of OI or maybe some other really mild skeletal dysplasia.  Around 4:00 PM, Carlton walked into my hospital room with the geneticist.  They took a seat beside my bed and within a minute, I realized that my world was spinning out of control again.  A totally new syndrome was on the table for us to discuss, Jeune Syndrome.   Feel free to click on that link to read more about it.  I clicked on it and frankly it makes me want to be sick to read the words.

We are still processing the information we learned today.  I don't know how to feel.  I know that my faith in God still needs to be unwavering.  I know He alone has taken us this far and through Him we can get through this latest surprise.

My elation has been replaced with fear.  I am scared that Will may die.  Maybe not now, maybe not this year, but maybe sooner than any parent would want.  I am shocked to be back in this place of fear and doubt.  I have a precious, beautiful baby boy laying down in the NICU and I want him to be healthy.  But tonight, I am scared again.  I am not strong.  I can't say anything other than this...please pray for us.  I rejoice in God's miracle that Will is alive.  I am so thankful that he is happy and healthy at this moment, but I worry for the future.  I am just finding it hard to let go of the control...to relax...to put it in God's hands again.  BUT, I will.  I must.

I will do my best to keep you all posted.  We have more testing to do now to check on Will's liver and kidneys.  It will probably be a couple of months before we have a firm diagnosis, but all signs are pointing to Jeune Syndrome.  As we learn more, I'll pass along the info.  In so many ways, I feel like our journey is starting over.  I have another topic to research, more support to find... and I have to worry about whether Will is going to live or die.

Your thoughts and prayers have truly moved our family and I know that God has given us a true miracle with Will.  I just pray that our sweet boy will be okay.

Thanks for your support.