Friday, April 25, 2008

He's Home

Ok, so the last post wasn't very short so no promises here. Mom's a bit run down today so it's good to get everyone home so we can make her sleep. By the way, we were in Ida Grove, not SF hospital. The grandparents came down Wed night and have been helping out.

We are happy and nervous to be home. It's the first child out of three that has skipped the NICU. We know it's the best place for him as the less new people to train for care the better, but it's nice to have the backup at the hospital. Our doctor and hospital staff been great here.

James is a strong eater, but his stomach needs to stretch a bit yet so he can eat more, but he's eating every 3hrs. Even with delicate care he has a few new small blisters. I believe Tony's skin got a bit more resilient as he got older, so hopefully the same will be true for James.

For those not familiar with EB I give a quick run down. Both parents have a recessive gene that prevents him from forming the protein that conecects the top two layers of skin. Without that protein, the two layers can easily seperate casusing blisters with minimal friction or pressure. Also, these blisters can form in the mouth and airways. There are many forms of EB, and unfortunately this is one of the worst ones as far as life expectancy.

Now, the best way to explain how James is doing is to compare him to Anthony. In that regard there is only one area where James is doing worse and that is the missing skin he was born with. He had a tear at his cord like Tony, but also had skin missing off one entire elbow and also the bottom side of the other wrist. There was a small spot on his leg bottom as well.

James' finger nails were much better than Tony's. They will fall off eventually, but they are smaller in size and he was only missing the ones from his thumbs. We are padding his elbows and his legs so we can lift them for diaper changes. His diapers consist of soft cotton for use under casts. One of Tony's worst areas were around the diaper because you couldn't bandage them and they were always getting disturbed.

So far James is feeding much better than Tony and is maybe a bit behind a normal 2-day old. We started the higher calorie formula and will start the Zinc and Multi-Vitamin shortly.

We are staying positive and doing everything we can to give him the best start possible. However, we know that we either will not have him for very long or that he will be a very fragile boy that will have a very tough and limited life ahead of him.

We continue to cling to our Rock and trust in his plan. If God decides to heal him, he will be healed. If not we will do our best with His strength. Please pray for our endurance in all ways, that we will accept help and support and especially for our little guy.

Pictures will be posted shortly, but until then the link below will take you to the hospital photo.

Home at last,
Stu, Tashia, Abby and Jimbo

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