Feeding Tube

We arrived to a feeding tube in Malachi's nose yesterday. It was quite unexpected and threw me for a loop. Someone had changed the nipple on his bottle and all of the sudden there was a speech therapist involved and a slew of people talking about wether he is capable of eating on his own, yada, yada. According to their calculations he needs to be downing 95 mls every 3 hours. the most he's ever done is 35, and that's about 1 or 2 feedings a day. They are now giving him the remainder of each feeding through a tube and thinking that it will stimulate things.

I changed back to the nipple he was doing well with and he is doing much better than the 7 mls they were able to get out of him. His regular nipple also does away with all the 'problems' the speech therapist found. Funny how when you talk up a storm about how eating is the hardest thing a baby has to do in a day and how his tongue does this and that and he can't breath and eat and so on forever - the simplest thing like giving him the nipple he was already used to is what makes the difference. Sometimes it gets a tad frustrating that when you leave the room all these people come in and make changes and decisions and you get back and there are a hundred more problems than when you left.

Apparently he is not pooping big enough for them, or at least some of them, either. He's pooping with every diaper but depending on who you talk to he hasn't had any 'big poops'. All I know is things are moving and the diapers I have changed look just like our other babies diapers have.

The bottom line (pun intended and quite cute if I do say so myself!) is that he can't come home until he can eat and poop like they want him to and it's seeming at this point that he is very far away from that. They are hoping to remove his central line today or tomorrow, as soon as he can show that he can take everything orally or through his feeding tube. He started throwing up last night when they tried to increase his volume. At this point we don't know if the surgery team will keep increasing or let his tummy have a day to get used to 75 mls. They took him off the TPN yesterday and switched to clear IV fluids which are down to 3 mls. His lipids are still at the same level and will come off as soon as he can tolerate all of his food in his tummy.

The family separation and distance between us and him are starting to take a toll. A big toll. I am doing my best to stay centered and it works most of the time; yesterday was a pretty big blow and I am feeling the stress. It may have something to do with all of the things we have going on too. It's funny how things like Blue and Gold Banquets, Pinewood Derbys, and your oldest child's birthday don't seem adjust themselves according to the latest. They are all here and coming fast and although there are many helpers that are saving the day, I still feel the stress when the communication is clear that it's mom and dad and being together again that everyone wants.

Balance; how in the world do you do it when something like this is going on? I lost it yesterday and I don't know when it's coming back. Why doesn't my baby want to eat as much as they want him to? I wish I knew and I hope it doesn't mean that something else is going on with his little system. I hope and pray.