Saturday, June 12, 2010

NG/NJ Blues and Cold Feet

Harmonee is eating a whole 12 cc an hour! Almost  half an ounce and this being 5 cc more then what she was eating before entering the PICU in April. Unfortunately this is all through her NJ tube, and not by mouth. With the GI team shooting for Tuesday to let her go home, its looking more and more like she will be going home on continues feeds by NG, with nothing by mouth. But no one knows the plans of the doctors, nor can anyone guess. This isn't such a bad thing, at least she will be getting food somehow, and it is MUCH easier to give so many meds through her NG tube. I was looking forward to feeding her some Gerber Bananas, and I suppose I still can look forward to that at least coming soon. I have to keep reminding myself it could be worse. A month ago I would have given anything to have 1cc of formula dripping through her NJ. I'm getting a little greedy. Baby steps are good things.

My "little Partier", as the nurses have started to call her, has been up all day and most of last night, just barely thinking about sleep she is testing out her voice box trying to fight the sandman. This is making me a little nervous to go home. I am ready to sleep at night with her, not stay up for 40 hours at a time like we so often did before transplant. Brandon keeps telling me we will have to take her hospital crib home, and record the sounds of the pumps and machines for her to sleep to instead of lullaby's at night. Going home is going to be an adventure I didn't expect.


  1. Before transplant I had spoken with a speech therapist to help Martim to eat solid food after transplant. He did not need her help because once he started feeling better his appetite was huge! Now he eats everything with so much pleasure, it´s so good to see!

    He still has problems drinkink liquids, but we´ll get there...

    Also after transplant he started to sleep all night! What a joy, after almost 3 years without sleeping a good night with feeds every 2hours...

    It will be baby steps for sure, but she is doing great and for now on it will be really fast...

    I´m really happy to see her photos, specially the one with Harmonee´s hand and yours. i had one just like that. the colour difference it´s amazing to see!

    With love,

    Alice (Martim´s mum)

  2. My goal was to have Eden eating w/o a tube by a year post transplant. At seven months post transplant she has been tube free for two weeks. It is still a struggle to get her to eat but she is doing it.
    Harmonee will be chowing down on her own before you know it.

  3. I sure hope so! Thank you guys, that gives me a lot of hope! Especially to see how all of the post transplant babes are doing so good! Its nice to see that there is "normal" in the future for her