Almost ready for home. Looks like Wednesday.
Mallorie is having some trouble getting in as much as she needs (by feeding tube) under normal circumstances, and since she's actually 2 lbs or more below her pre-February weight, this is a big deal. I've started a list of high-calorie foods that can make her feedings more concentrated, like nut butters and avocado, but right now we're working on increasing the volume she takes in at a feeding. There seems to be a back-up plan of nighttime continuous feedings, and even though I am not crazy about that option (I think stomachs need to rest, sometime), I am even less crazy about having to continue waking up to do nighttime periodic feedings like now.
I love the attending who is overseeing the team caring for Mallorie right now. She is all about the details, and isn't missing the fact of Mallorie's weight loss and the need to make sure she will be able to continue doing well at home. She reminds me of Dr. B in some ways. So if she has a plan, I'll do it and stop trying to figure it all out myself. Also, there's an interesting dietician somewhere around here who came to see us last week when we first got to this floor, and she has some recipes she wanted to share. I think if she comes up with what she thinks is a good "formula" for weight gain, then it will be a good place to start. I know that as tired as I am, when I start adding going back to work into the mix, it will be easy for me to lose sight of the whole picture. So I'll happily take all the advice and help I can get from them.
Our house was broken into and some things taken when John was out here with us this time. It's been hard on the kids, and hard on us, and it's emotional for me going back knowing that this happened. It really stinks. It was just "stuff," thank God. That's the part I'm trying to keep in my mind.
5 comments:
Oh no, I'm so sorry to hear about the burglary - that's really horrible. I know it's only "stuff", but it's your space that was violated, and I know (alas, from experience) how foul that is.
Praying you are headed home on Wednesday and that everything falls into place for this transition!
Gavin is still fed all night long....this is actually when he receives most of his nourishment. At first, I didn't like this, but he can't tolerate bolus feeds and we had no other choice.
The funny thing is, Gavin gags and spits up often during the day, but during the night hours, even with the pump running, he almost never gags or spits up....so this has been a blessing to us.
Praying and thinking of you! Hugs!!!
Peanut does overnight feeds on a slow drip as well. She doesn't tolerate a bolus of more than 100 ml, so we can't get enough in her during the day. She does get blenderized food during the day through her tube, but not enough to sustain her. So she gets formula overnight. I've made peace with it. With her metabolic disorder, she can't go more than 4 hours without hydration anyway, so this way we take care of two things at once. :)
I hope that you really get to go home tomorrow, that would be great!!
I am so sorry about the break-in. It is very violating to know that someone was in your place. :(
She looks so good Connie! Praying you this way!
Mallorie just has the sweetest face Connie. I agree with Cathy, she looks really good:) Praying you home and I am so sorry to hear about the break-in in your absence. It is just plain wrong:( I love you girl and am praying for both of you girls. You are important to me:)
Love and Hugs, Laurie
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