Sunday, September 27, 2009

Tubefeed me Lord!

So I had one of those crappy days, the kind that comes after another crappy day. It would be nice if all this stuff going on with CJ was progress and moving forward each bit instead of occasionally going backward. Again though, I'm hit with that it could be a lot worse. That other family was told their baby would get better and instead, just when the baby had gotten the breathing tube and ivs taken out and was about to graduate to a less-sick-kid bed the poor thing stopped breathing and went way back. That's what's is most frustrating. I take that back, the waiting is more frustrating. It would be grand if we just knew, ok, just three more days of this crap and then we can all be home. Today I went to get my daughter and she was asleep in our bed (because we just are too tired anymore to fight that battle) with her little butt up in the air like she used to sleep when she was a baby. And I was all: oh how cute, wouldn't it be cuter if CJ was asleep next to her though? I need to stop doing that to myself I think. And probably to others, mostly my hubby. What's frustrating though is that it keeps changing on us. First it was the breathing thing and it was like, ok, so we just have to wait for him to slow down his breathing and work through the fluid in his lungs. But then it was that he had jaundice too and so it was like: ok, just wait until the lights come off. And yeah! They came off. But now he's not gaining weight and so I try everything to breast feed him and it seems like it took too long and worked too many calories off, or he's tired still from the billyrubin (sp? being yellow from jaundice...) or tired from still breathing fast or who knows? And he keeps losing weight, the poor thing was so tired today he wouldn't wake up to save his life. So we had to keep "gobaging" him which is the nurse term for tube feeding. I have no earthly idea how to spell that either. When the nurse told me he had lost weight again, after all that work and hardly any sleep I couldn't even cry. I just sat and prayed. I asked got to "gobage" me so I would be all full of energy and could make it through the day because I swear, I was too tired to feed.

8 comments:

  1. Oh Court, I can just feel your frustration. Stay strong, this too shall pass, and before you know it, all 4 of you will be at home. Take care of yourself, although I know that is probably easier said than done. But you must! You guys are in my prayers!

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  2. Hugs, hugs and more hugs. Don't worry about Kaiya not sleeping in her own room right now. She'll get there eventually. And so will Caleb. The billirubin lights are totally sleepifying, they were with D at least. It is so hard for you all so be kind to yourself. Remember to eat, drink water, think good thoughts. You just got out of surgery too you know. Lots of love from all of us here.

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  3. I hope today brings better news. You are in my thoughts!

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  4. Try to remember that you don't want to bring him home one moment sooner than he is ready. I'm so sorry that you are all going through this and I hope that things take a turn for the excellent very soon.

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  5. Oh, Court. You poor thing. This is such a tough time for you. I wish I could send you a big package of energy. Everything is so much scarier when you are exhausted and at your wits end. I'll have to just send my prayers instead.

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  6. It's always tough when things are up in the air like that. I hope you all get to go home soon with the baby. Just keep up your strength. Eat, eat, eat so you can nourish that baby!

    I hope you come home soon!

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  7. I hope that he coming home soon. You will be in my prayers. There is nothing worse then not being able to do anything about any of it... Again you are in my prayers and keep up all posted!

    Becca

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