Loosing weight

Well now that almost one month has passed since my last update I think I am a little overdue for another one.

On this past Friday we had a doctor's appointment and decided to give a trial run with out the tube and see how Josiah would do. The first two nights we had to wake him up to eat, so of course those feedings did not go that well. However the nights to follow he woke up on his own. It was like he realized that his tummy was not going to get full on its own without working for it. Occasionally we would have to wake him up to eat during the day but I remember doing that with Iylah in the beginning too. We tried a bottle a few times again and he still gets stressed with it and then eats poorly the rest of the day. He drank less than a half an ounce at each feeding with the bottle. So we took the bottle out of the picture again and just nursed. The benefit to the bottle is that we can fortify my breast milk to make it have more calories per ounce. However he still is not doing well enough with the bottle compare to breast feeding. At our appointment on Wednesday we found he had lost weight. So now we are back to the tube and trying to decide where to go from here. We could get a more permanent tube that goes directly into his stomach from his abdomen. The tube that goes into his nose is more for temporary purposes. It has the risk of getting accidentally pulled out and going into his lungs. It also gets in the way when he eats by mouth. He is less coordinated while feeding when that tube is there. The tube also causes him to reflux and spit up. Josiah needs the extra feedings from the tube however there are so many negative things that go along with using it.

At his cardiology appointment today his atrial septic defect (ASD or "hole in his heart") is getting smaller. It looks like that may heal on its own :) and is probably not a true ASD but rather a condition that many babies are born with and out grow. His pulmonary valve stenosis is still the same. This is not bad news because the stenosis is minor and even if it stays the same he may not have to get surgery. But if it worsens he will have to under go a minor surgery, where they would go in through a blood vessel in his leg up to his heart and dilate the valve. The cardiologist said that the older he is for the surgery the better. However, this surgery is done on many infants that are much smaller than Josiah. If Josiah does need this surgery it will be done before he is one year of age.

Josiah is still on a low dose of oxygen and we will not begin weaning him until he is gaining adequate weight.

As for me... this last week has been very very hard. I know God will not give you more than you can handle, but I feel like this is more than I can take. I was so glad to remove the tube. I really really hate that yellow tube coming out of his nose. Hate is a strong word, but I can say with all confidence that I really HATE it. So to put it back in has been incredibly discouraging. I am worried that putting the tube back in will eventually cause him to loose the skill of eating by mouth (which apparently can happen with infants at this age). He also has been very gassy lately which makes everything harder. He swallows a lot of air during feedings and when he cries. Then he often times will not burp but keeps the air in which causes abdominal discomfort. Please keep little Josiah in your prayers.