Tuesday, February 25, 2014

5 Months

Since his surgery Andrew has been doing good. He was just released from cardiology care!

Still trying to figure out his liver issue and get his weight up. He should be around 12-14 pounds and he is almost 11 pounds right now.

I want to start doing updates and small things I want to remember. So here goes.
He has found his toes! Oh my! Trying to put a diaper on can be tricky
We are having a hard time getting him to sleep in his bed at night.
Loves his fingers
Takes three naps a day.
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Andrew Thomas Ashley

I am still here!

Andrew was born September 30, 2013 at 10:28 pm. He was 21 1/2 inches and weighed 6 pounds 9 ounces.

He has had a rough couple of months, but we pray that things are looking up.

While we were in the hospital he was diagnosed with Jaundice. Most babies are placed under the light or sun and it goes away. Andrew's is the opposite. Sun nor the light will help.  We were sent to Children's of Alabama in Birmingham to a GI doctor. They have done blood work, two liver biopsies and everything to see what might be causing his to be high. As of now all test have come back negative. They have tested for Biliary Atresia, Neeman Pick C, Histiocytosis, and Alagille Syndrome. One doctor at Children's of Texas thinks it is Alagille, but our doctor is not sold on it. At one time she was, but she has since changed her mind. Every time we go back to see her, we do blood work for a different diagnosis. Andrew has been stuck so many times it is just heart breaking. She did say that 40 percent of liver diseases are not diagnosed. Right now we are seeing if Andrew could have a fructose intolerance. It is associated with liver disease. She changed his formula to Pregestimil, but he is not liking it to well.

At our two month check up (Monday before Thanksgiving), our pediatrician heard a heart murmur. We were told by one GI doctor that he had one, but it would go away. Like most do. Well, our pediatrician set us up with a cardiologist at UAB for the next day. During the heart exam a murmur was noted and we were told it needed to be repaired sooner rather than later. It was located in the extra vein that we are all born with. Most close up on their own. Andrew's just didn't close up due to the size of it. So that doctor talked with our GI doctor and decided to admit us then for nutritional reasons. Along with surgery to repair the vein. It is also called PDA (Patent Ductus Arteriosus). Chris had the same surgery at the same place and age. So we knew what to expect. So Chris, Andrew and I  spent the week of Thanksgiving at Children's of Alabama. We even watched the Iron Bowl from there. Our parents came several times and stayed with Andrew and I while Chris would come home and do a few things.

On Monday Andrew had his surgery and did great. He was moved to the CVICU for the night to make sure he did good. The nurses there are AMAZING! The night nurse did everything for Andrew (feeding, bath, diapers), so Chris and I could rest. When he came out of surgery he was still on the vent, but by the next morning he was off and was able to leave the unit! So Tuesday we moved back to our old floor. Mom came up and stayed while Chris went home for a couple of hours. As soon as Chris got back around 3:00 p.m., they told us we were going home! So after spending a week there we were glad to be going home.

More about how Andrew is doing in the next post.

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