Update on Jedidiah

wow it's been a while. I hope my blog works the same way. They had an upgrade that I really was not interested in trying at this time, but it wouldn't let me in to my old account and I had to make a new one. Ugh.

So I have a lot to fill you all in on since my last post. I don't have the time, nor energy right now to go into great detail. Jedidiah has been in the hospital now for 11 days! I have been here with him this whole time. Talk about hard. The longest time I have ever been away from my girls was about 8 hours! I did get to see them finally yesterday. We were trying to keep them from getting sick. However Jerry just called me this morning to say they are now sick! I am glad I got to see them when I did. It does look like we may be able to come home on tuesday. But that will depend on Jedidiah gaining some weight. The past few days hasn't been too impressive for weight gain. So they are going to fortify his tube feeding with extra calories. This child is NOT interested in eating. He is refusing the bottle. LONG story there, but it has to do with his fasting while waiting for his MRI. He took the bottle before, but wouldn't ever since. I have a lot of work to do to get this boy his food. First I have to weigh him, then I nurse him, then weigh him again. That gives us the number of milliltters he took from me. He is supposed to be taking in 120ml at each feeding. Sometimes he does, but more often he doesn't. So then I have to make up the left over mls in a tube feeding. He has a small tube that runs through his nose to his stomach. I do that and then I have to pump! We are trying to build up my supply. Since he has not demanded the milk from me we have to artificially stimulate the milk to build up. He has to be fed every three hours (the time starts from the start of one feeding till the next). the regimine takes me 1 to 1 1/2 hours to do! That leaves me with only 1 1/2 to 2 hours before the next feeding. And I have to do this in the night as well.

All of his tests have come back normal. And I assure you he has had a ton of tests! CT scan, MRI, arterial blood draw (multiple attempts), a half dozen heel sticks, a spinal tap, whole body x-rays and even an eye exam. We've seen neurologists, eye doctors, nutritionists, speech therapist, physical therapy, occupational therapy and a lactation consultant! It has been a VERY LOOOONNNNNGGGGG 11 days. I want to go home. Jedidiah has been such a trooper through all of this. He is such a happy baby. It is sad though to see that he is hesitant now to give someone a smile. That really breaks my heart. He was always giving everyone he met big happy smiles. He smiled ALL the time. But now he doesn't. I hope that changes once we get him home. He came into the hospital weighing 10 lb 8 oz. And today he was 11 pounds even. That's only an 8 oz gain.

Ok, I am worn out. The nurse will be in here in a few minutes to teach me to put in a feeding tube, as Jedidiah will have to have one for a while. And they won't feel comfortable sending us home until I can do it. Then we start the feeding process :-)