On any given feeding it can take anywhere from 10 minutes to an hour and a half for him to eat a 6 oz. bottle. It is likely Max will ALWAYS need formula. It is the best way for the doctors to monitor the amount of protein he gets.
This morning it took me about an hour and a half to get his first bottle in. He just wasn't in the mood to eat. We started at 9:00 and it was almost 10:45 when he finally finished.
Because he was more into sleeping this morning, than fighting, I got some pictures of the process through my computer camera.
As you can see, he was nowhere near interested in eating. He HAS to eat morning bottles because his appetite is the best in the morning. As of 3:15 today, he's only had 2 cans. I don't think we'll get more than a couple more in.
As he gets bigger, he will need more protein, but it will always need to be closely monitored, as his body doesn't know how to break down proteins properly, but we all need protein to survive.
Right now, the doctors would like to see him getting 5 cans of formula a day, plus any solids we can get in. He fights me with 3 cans a day, and ONLY wants solids. By fights me, I mean he literally bucks up and down throwing his whole body around. He kicks and hits the bottle out of my hand. He spits the formula at me, or just lets it dribble down the corners of his mouth. Most of the time feeding him I am pleading with him to finish the bottle. Most of the time he just gives up and goes to sleep, I think because he knows I won't feed him while he's sleeping, or he's exhausted from all of the fighting.
There has always been the possibility of needing a feeding tube, but up to this past 6 months or so, he has done really well eating for me. Once the increase of fluids and calories came into the picture, we started re-thinking our decision about a g-tube. I've largely been opposed to the idea, because the argument "for" it almost always started with how much EASIER it would make our lives. That was a stupid argument to me. We aren't interested in what is easiest...we want what is best for Max. If given the choice again, we would do it the same way. Eating by mouth for so long has developed him in ways he would have missed out on with the tube doing most of the work.
We came to the decision of the tube, and started asking his doctors about it. They all agreed we had given it a very valiant effort, but Max made the decision for us. Which is what led us to meeting with the surgeon yesterday. He needs to eat more than he does. He needs to learn to eat out of something other than a bottle, and right now he can't practice that without sacrificing the caloric intake. And he needs to start trying new solids, again something we can't do while forcing the fluids all of the time. The tube will allow him these things. He will be able to eat what he wants, while practicing with new utensils to feed him. Cups and forks and fingers!
We will also be able to give him feedings at night, or during the day without his help. He can be playing or sleeping and still being fed. He can receive his medicines without having to taste them every again. And he will get ALL of the dose, instead of it sticking to the bottle, or him spitting it out, or deciding he won't eat it. We will be able to feed him while traveling, either by air or land.
It certainly hasn't been an easy decision to make. But the peace knowing how much better his and our lives will be because he is at this point is worth it. I have a hard time picturing it on him...him having something artificial on him all of the time. Him having a hole in his stomach, that yes, I will see when I have to change the tube out. But we made a deal with him several years back...we'd help him fight as long as he wanted to. This is another step in that fight for his life. Our only goal with Max is to give him the absolute best life he can have for as long as he's with us. That means giving him this tool to help him eat. And it will mean things down the road that may be more difficult of a decision than this one is.
As long as he's still the king of the wild things, and has the roar in him, we'll keep giving him every opportunity to roar his terrible roars! This is just all still a part of the story of Max. What a story...
6 comments:
I think you are so awesome and I am so proud of you!
Love Ya
I think you and Steve are such wonderful parents. Max is one blessed young man.
I know it must have been hard for you two to come to this decision, but ultimately it sounds like it is best for Max. He's going to have the best time trying new utensils and the different kinds of food! You guys are all so amazing. :)
What a story indeed!
It's been an honour to pray and roar along with you.
Unfortunately till now it's been directed at his bottle feedings... but it's so neat to see the amount of fight Max has in him!
I'll be praying for the surgery.
From the sounds of it, it could really help Max become a happier, more relaxed and developing little boy. One of the boys I keep 3 days a week was constantly having ear infections. They didn't want to do ear tubes, but when they decided they had to, they discovered that their son was much happier and his joyful, more relaxed personality bloomed.
May this bring you and Max much deserved freedom. Yeah to all of you for fighting for his best- in waiting it out and now in taking a new direction.
Thanks Aunt Nancy! I love you too!
Chi...we do have a nosey cup...and I would love the info you have on the mic-key. I wish we were in the same town!
Kristin...it has been one of the hardest decisions. Seriously brain surgery was an easier decision than this, bu I know in the end it is best for us all.
Greg...it's pretty special how you've been roaring with Max all this time! Even with his fighting through bottle feedings...he's still fighting...and we take note of that. At least he hasn't given up.
Angela...we have already become more relaxed. Of course I still have to feed him by bottle, but it is so much more liberating to know in a few more weeks we won't have this fight any more!
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