WE'RE HOME!!!!

We are finally home! I can not tell you how excited I am to be home. It was a very long two weeks in the hospital. We would have been home a day earlier but they needed to run one more test, and the results did not get back by the end of the day so we had to stay an extra night. I was non too pleased. It has been a bit trying to continue his feeding regimen at home. Not as bad as I thought, but still a lot of work. The first night we were home he did awesome, taking in all his calories from me. But it's been down hill from there. He did come down with the tummy bug the night before we left. and knowing how it has effected all of us, it is possible his lack of appetite is from feeling yucky. I know I felt yucky on and off for a week. He still does not want the bottle, making it take longer for his feeding. I need to give him a try with the bottle at each feeding. But he of course refuses and then I need to set up his tube feeding. Then when that is cleaned up I have to pump as I need to keep my supply up for when he finally realizes he's hungry and needs to be eating a lot more than he has been. It does seem like we will never reach that point. But non the less we persist. I have a few pics to share of the hospital stay. I have a before photo of him when he first got the feeding tube. Then an after pic of him at home, two weeks later of tube feedings. I am not sure if you can tell a difference, it is more noticeable in person. But he is getting just a hint of some cheeks :-) Notice his hand mitts in the before picture. He had to wear them until he stopped pulling on the tube. He managed to pull off the mitts (we didn't' put the tape on them) one night and pulled out the tube.

There were a ton of things that happened at the hospital, too numerous to count. One funny though...The doctors had come in to assess him and asked if he could roll over from his tummy to his back. As they were saying that they were putting him on his tummy. So there on the bed lies Jedidiah with his big heavy head on the bed. I told them that he wasn't even capable of lifting his head off the floor, let alone roll over. The VERY second I said that Jedidiah raised his head high (as if he's been doing it for months) and rolls right over!!! We were all laughing. It was totally unbelievable. The same thing happened when the speech therapist asked if he was making any consonant sounds. I told her no, he just coos. This time it took him till the end of the session and he was babbling on and on with the "b" and "m' sounds! I figured, hey maybe if I say he can't walk, he'll just up and start walking. No such luck though. So here is the before and after photos. I couldn't put them next to each other. The one with him in the lighter outfit is the before, and in the darker outfit, after.

Jedidiah in the cage, er I mean the hospital crib (it looks like a big blue cage though).

A better view of the cage, oops I meant to say crib :-)

Ok, I look dorky, but this is Jedidiah purposely hitting my hand with his foot, IV and and all. It was a little game he decided to play. He started doing all sorts of new things while we were in the hospital.

Here is Moira's doll all doctored up with some stuff I brought home from the hospital. They have been watching me do Jedidiah's tube feedings and were setting up the doll for tube feedings as well (you can see the syringe and tube that leads to the baby doll bottle). Plus the baby has a few splints on as well. They had to put a splint on Jedidiah so that he wouldn't pull out his IV that he had in his hand. They had us on contact isolation at one point. They had brought these extra splints in and couldn't' take them out of the room, since we were in isolation, so now my girls are playing with them.

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 :-)

Prayers are needed!!!!

Ok, it is late and I have written a few emails about this already and am too tired to write it all out again. So I copied something i wrote earlier and put it below. It is the bare minimals on the situation. I will try to update tomorrow if I can.




This has been a long road, and it seems it is going to get bumpy here for a bit. I have had to write a few emails about this and am tired right now, so I may not get all the info here, but enough for you to know what is going on and what to pray for. As many of you know Jedidiah had started out small (he is 7 months now!) and was growing along his own little growth curve about the 1 %tile. Then he started falling off the curve. I fixed a latch on problem and he gained weight, but no height. So the doctor said to come back in a month for a weight check. Well that was this past thursday. He didn't gain any weight, nor had he grown taller! So we did some blood tests and urine/bm tests. The good news is that it is not a milk supply issue--otherwise we would have seen evidence of that in some of the tests. The bad news is we still don't know what is going on. He had three readings that were off on his blood test. One the doctor feels is just off because a baby's reading would be higher and they probably have the norms set for an older child/person. Then he had one of his liver readings off a bit (not a whole lot) that could be totally fine, maybe an indication of an allergy even, so nothing that points to a specific problem. Then he had one of his thyroid readings off. *they only got two of the four thyroid readings done as they couldnt' get enough blood from him. It indicates a low thyroid. Our doctor is stumped and has us seeing someone else tomorrow. My sister (who is a nurse) thinks that it may be his growth hormones. If it were a thyroid problem she thinks that all his thyroid readings would be off. But growth hormones are from the pituitary glands and they could be effecting his thyroid, which is why only one of them is off. She has done a bunch of reading up on this for me, and the fact that his head keeps growing (it's the normal 50% for a 7 month old) but his weight and height are not are a strong implication of a problem with growth hormones. But obviously we are probably going to have to go through more testing. it has been stressful, so please pray for our peace, and wisdom for the doctors. Please pray for Jedidiah's health (to not get sick as he is so small). And pray for just the logistics of arranging child care for the other kiddos. We have a great church who are really helping us, but a lot of this will be last minute needs. We found out the results today and had to get an appointment with another doctor and then needed to call around to get a babysitter on short notice....