Why? Why? Why does this have to be SO hard?

I have asked John that question many times in the last week. I have been completely overwhelmed lately. Caleb's care and feedings require me to stay home most all day, every day and it feels like it is never ending. Just when I feel like I can get to a place to rest my very weary head, he wakes up! You just never know how he is going to be from one minute to the next, whether he is going to throw up all over the place, etc. So I am really not sure how much of Caleb's daily care is stress or just completely overwhelming me. Not to mention the couple 2-3 hour naps I get each night certainly do not help. The last couple days I have felt lousy, just completely exhausted and I know it is because I am not taking care of myself. I do not get to rest at all in the day because if Caleb is actually asleep then I try to spend time with Sara or help Ryan with homework. Not to mention the dishes, laundry, etc. :) Needless to say, I feel completely inadequate as a wife and mother to Ryan and Sara these days!!

Caleb's feedings the last week have gone from bad to worse. We tried to increase his volume a little bit and it completely backfired on us. It aggravated his reflux to the point that now he is hardly taking 80 mls without issue. Most days at least one feeding comes back up. Caleb is not fed like most newborns where he eats until he is full. He does not have enough endurance from his heart conditions to do that. So some bottles he can drink a good bit (2/3), and some bottles he barely drinks any at all. We have tried giving up on the fact that he needs to eat every 3 hours as we were instructed. He was certainly never hungry enough to eat that often, so we have tried to space it out to 3.5 hours and sometimes he is hungry enough to drink a good bit and then the next feeding he won't hardly drink at all. He is not gaining weight like he should, so this just compounds the stress for me! He does not have the endurance to drink a whole bottle, so that is why we were put on a strict schedule to feed him 24/7. We have slowly increased the amount and tried to spread it out over more time so that he is actually hungry for the next feeding, but most of the time, he could still care less about eating. We are up at night putting his milk/formula into his feeding machine, just to try and spare him a few calories being spent by drinking it from the bottle. So he probably would sleep a really good stretch for us at night, but we do not have the luxury to enjoy it...he needs the feeding, no matter what.

Just today, Caleb is basically throwing up anything that I try to 'push' through his NG tube. I give him about a half hour to drink what he can/wants from the bottle and then we are suppose to push the rest by machine or syringe. Today, anything extra I have tried to push just comes right back up. Couple people have wondered if it is a milk allergy, but he does not seem to be all that uncomfortable. He just literally overflows. He is not really cranky or anything like that. He just overflows and that is it. I would assume if it was a milk allergy then he would be much more miserable??

I am sorry to vent my frustrations here on the blog, but we just really need some prayer as we seek extra doctors advice as to what is going on. Just when I thought we were free of one doctor (the surgeon), and those extra appts...now we have a new one! He has his two-month check up on Wednesday and it will be interesting to learn his weight. Here's hoping he has at least gained a little bit. We have looked into taking him to a GI doctor and have an appt. with them next week. Here's hoping they can help us figure out what is going on and why he is throwing up so often anymore. He never had this problem at the hospital, so it is frustrating to feel that he has gone downhill, so to speak, since he has been home. He was up to taking 90 mls from the bottle and now we struggle to get 80 to stay down. Today we are not even close to getting 80 mls to stay in. And he is suppose to be taking 600 mls in a day! We are not even close!

Hopefully I can post some good and uplifting news soon...sorry again for laying all the frustration out here on the blog.
Joanna