April 18 Post

Hello everyone,

We spent several hours up at the hospital today to meet with several people. We ended up meeting with the Neonatologist and the social worker which were the two main people. Still want to meet with the Utah Down Syndrome Foundation person.

We're still working on getting Carter where he needs to be and they are doing a battery of tests on Monday to check liver function and his bilirubin levels. The rest of the tests are to rule out a bunch of things.

They've added formula to his milk to increase his calories to help in weight gain. They've also given him vitamin supplements to make up for liver concerns until the tests come back. They are also going to reinsert the other feeding tube into his stomach and see how he handles it. It also looks like he has a small eye infection that is being treated.

We went back up this evening to hold him and so Kristi could give him a bath. He enjoyed it but mom probably enjoyed it as much if not more :)

They are still looking at the heart weekly with an echocardiogram, checking on the liver (which is enlarged like the heart) and supplementing his diet with additional calories and vitamins. His bilirubin levels still fluctuate so they are looking at that too which is liver related.

Positives: edema (swelling) is down, he is more alert and awake when he is awake, likes baths, no IVs, no ventilators and is in a crib and wears clothes.

Negatives: still on hi-flow canula (3 litres at 22-28%), still has a feeding tube, liver being looked at for a variety of things (size, bilirubin output, infection, etc.) and still watching the heart.

I hope you enjoy this short 18-second movie of Carter just after his bath and getting ready to get dressed in his newly made bed. The nurse tonight is Trisha again. The same nurse when he was admitted on March 31.

Sorry if the email isn't entirely coherent. The writer isn't.

Love,
Alan & Kristi