The wait is over…..Life goes on….David’s Story.

 

 

 

 

 

We were done having children. We were, right? I gave away all the baby clothes we had. I gave away the swing, the carseat, the walker, the portable playpen, everything. I gave everything away.

So imagine my surprise when the *test* indicated I was knocked up yet again.

I’ll admit it, I was really hoping for a girl.

I mean, I was going to have to buy all new stuff anyway, couldn’t it all be pink this time? Please? Pretty please?

Evidently the testosterone gods did not see it my way.

So we start again. Ammniocenticis at 16 weeks.

Waiting.

Phone call from genetic counselor. She gave up and just gave me the results over the phone……

Again, simple, direct, right to the point – the test confirms a diagnosis of citrullinemia…

*REALLY? …..REALLY?!?!?……and you’re sure it’s a  boy????…… *

I thanked her, told her I had already contacted the genetic doctor at Cincinnati Children’s.

 They know us very well in the genetics department.

Life goes on. 

David Henry Cole was born via scheduled c-section on May 11, 2010.

 ….repeat after me…..They whisked him away and I didn’t get to see him for 3 days. I was kinda hoping for 4, but 3 it was. No rest for the wicked….as they say.  David did well. His initial ammonia level was 52.  He responded well to his IV meds. He tolerated his low protein formula and oral meds, although he did require an NG tube for the first 2 weeks of his life. David spent 8 days in the RCNIC.  Again, we were sent home with a very strict feeding schedule. 3 oz every 3 hours. His sodium phenylacetate and arginine were mixed into his required formula on a daily basis.  David was a lax eater – he was dribbly and really didn’t care if he ate or not. Some days it was an all day event to get him to take his feeds. But he improved, eventually taking all his required formula and then some.

When he reached 5 kilos we scheduled his transplant evaluation. He was 2 1/2 months old.  This time around our team was a bit more cautious, we had 2 boys with 2 very different outcomes. Jonathan is still working through his citrullinemia – related issues. Zachary had a rough road with multiple surgeries and hospital stays. So wait or not? Harm the body to save the brain?  I wanted David’s brain intact, that was the primary goal. If the road was a little bumpy to acheive that. I was game. We decided to list him and wait and see. We knew that if  he went the 30 days with no offer, he’d be bumped to status 1B anyway. He was approved and placed on the waiting list.

The day was August 5, 2010. 

We received the call at approximately 3am on Wednesday, August 18, 2007.  A donor had been found. Drop what you’re doing and get down to the hospital. What?!?!?!?  It’s 3 o’clock in the morning!!! I have to brush my teeth!

Yes, these are the odd thoughts that cross your mind at 3 o’clock in the morning…..

I thought we were going to wait and see! I was prepared to wait for a month, maybe 2, that seemed ideal to me. This time around the wait was 13 days.  I had wanted it somewhere between 4 days and 6 months. I suppose that does qualify as somewhere in between! Were we ready for this? Would it turn out okay?  I knew in my heart of hearts that this was the best possible decision I could  make.

We arrived at the hospital at about 5:30 am.

He had his surgery on August 18, 2010. He was 1 week past his 3 month birthday.

 I’ve come to realize that our life was never meant to be normal.  At least not as I used to perceive ‘normal‘ to be. On the other hand, ‘normal’  is a relative term. My life now seems normal to me. Someone said to me, 1 month. 1 month of change and it becomes a forever part of your life. 1 month can change your life forever.

So what does 2 months do?

That ‘s where we are now. David has been inpatient for 2 full months and that is where I start this blog.