Made of Gray

What's the plan?

Holly D Gray1 Comment
Caleigh's life till now has been full of plans. 'Plans' that she breaks, disorganizes and then basically ends up doing everything her way on her own time. This leaves all of us in amazement on a daily basis but Caleigh's perseverance and her way seems to be working so far.

We finally made it in to see the genetics doctor. When Caleigh was first in the NICU she had a chromosome test ordered and everything came back fine. So there wasn't much for the doctor to order at this point. Apparently there is a new chromosome test that measures very subtle changes in the genetic workings. Our doc didn't like the lab that the test has to be sent to so we are going to wait a year or more before we get that test done. Although, no one knows what causes Gastroschisis, genetics may or may not be the culprit. We've always been told that environmental factors are the cause. This means 'I don't know' in doctor's terms. The doc said that she is almost certain that there isn't anything genetic at all going on with Caleigh. We could have told her that, but I guess we needed a medical doctor to confirm. Caleigh's situation is the result of several unfortunate events during pregnancy and surgeries. Of course, those unfortunate events gave us the Caleigh that we love and adore today! So the plan is to wait and do the special chromosome test at a later date. We are supposed to see the genetics doctor in a year for a check up.

Helmet Head? You know the hair style you get when wearing a helmet for a long time. We took Caleigh to the cranial band evaluation appointment yesterday. And it looks like if we decide to go ahead with the band that Caleigh could have helmet hair for about 4 months! Actually, I don't think it messes up your hair, but you get the point. We went to Cranial Technologies, it is about an hour from our house. They think that they can help the flat side of Caleigh's head. This is called Plagiocephaly. Each band is about 3 grand. So now the plan is to hold our breath and wait for approval through our insurance company.

Ok, now to our GI Appointment.....Drum roll please.........
We had a great visit with our GI doc. Caleigh is doing so amazing. Gaining weight like crazy. Maybe a little too crazy. She's doing really good with taking baby food. Her formula is up to 30ml an hour. So here's the PLAN....
Start trying to bolus feed during the day! At first we are going to do 2 ounces over 30 minutes every 2 hours. This is about 5 bolus feeds a day and then at night we will do the regular continuous feeds. If she tolerates this then a few days later we will go up to 3 ounces every 3 hours. She would be eating on a normal schedule! Plus right before we give the bolus of formula we are going to try giving baby food. Trying to get Caleigh to recognize that she is hungry and that baby food is good before filling her belly with formula. Next week if all is good we will also go down on TPN time. Probably to 8 hrs a day. Bolus feeds are a huge step and we are really excited to be at the point to try it. Our GI doc gave us a referral to Baylor's feeding clinic. We already have speech therapy in our home twice a week so I need to find out what they offer that is better than that. So that's the feeding plan. We are praying that Caleigh can tolerate the volume of formula. I guess we will find out in a few days....

When we were at the GI doc, we all started reminiscing the day that we met. Eric was at work that day. Caleigh was in 3B, in a back corner by the window. The girl needed a corner with all the stuff she had! I came in that fateful morning and Caleigh's belly was huge. Absolutely enormous. She was sick, very very sick. I didn't even pick her up that day because it would have hurt her to much. I just sat by her crib, holding her little hand and talking to her. It was the same day that a little baby in 3A lost it's struggle against prematurity. It was a low day in our journey nonetheless. Our 'now' GI Doc was on call that week. He walked in made his introductions and I could just tell by the look on his face that he was really worried. Everyone was thinking another obstruction....another surgery. He went to look at Caleigh's x-rays. He said it was one of the worst x-rays he had seen. They looked crazy, you couldn't even tell what was going on. He kept talking about how big her belly was. It baffled him. Caleigh made it through that day just like all the others and left a definite imprint in his mind. Yesterday, he kept saying just how far Caleigh has come since then. How good she looks, and what an amazing journey she has traveled. He left us saying "God is good."
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