I suppose that if I set out to tame a squirrel (don’t worry – not attempting this right now) I would realize that it would take quite a bit of time. And I would start very slowly, trying to gain the squirrel’s trust and I wouldn’t get discouraged when it didn’t happen over-night and I would just keep my eyes on the goal of having a rodent as a pet… hahaha.
It’s a crazy analogy, but I’m starting to understand that getting Ava to a point where she is comfortable with things in her mouth and orally feeding is going to be just as challenging as taming a squirrel, and probably more so. I’m just really having a hard time finding it in myself to be patient with this, as I said in my last post, I know it’s going to be a long hard road, it’s just that I want it so bad and I’m so worried that it won’t happen that I’m finding myself quite stressed out. My head knows that this is one more thing that I can trust God with, it’s just that my mother’s heart just aches for my baby who doesn’t know how to eat.
And tube feeding is just plain awful. For starters, Ava has a tube in nose and down her throat all the time that she has to deal with and we have to look at. Then there is always the risk of it getting pulled out, which did happen last week – so then it has to get shoved down again. And the tube itself probably interferes with her wanting to suck and swallow because I’m sure it’s uncomfortable to alway have something in the back of your throat. And as it’s the only way to feed her and we need her to gain weight, she has to eat 8 times a day – every 3 hours – whether she is hungry or not. And when she is eating she is tied to her feeding pump for 45 minutes, so really, there is only 2 hours and a bit that she is off it between feeds. And all the constant feeding again interferes with her wanting to eat orally because she is never hungry, or worse, nauseous from being force-fed!
And it takes forever to get a feed going!! First I have to pump at some-point so there is milk for Ava. Then I have to measure it all out – as the dietician at Sick Kids tells me how much I should be giving her at each feed. Then I have to bring the milk to room temperature if it was in the fridge. Then Jason or I will get the pump out, put the milk in the bag attached to the pump. Prime the pump. Then her meds have to be prepared, as she gets meds every 3 hours. Put the meds down her ng tube, attach the pump and let it run. It’s all so tedious, especially at 3 am.
And I haven’t given up that 3 am feed yet because I’m so hesitant to give Ava formula as she has such a sensitive tummy to begin with. I’ve had to give up all dairy because she seems to have a cow’s milk protein intolerance, so at least she isn’t refluxing as much now, but she still vomits and feels uncomfortable quite a bit of the time. So I’m holding out on the formulas as long as I can, even though I want to sleep so badly.
So you can see why nursing her, or even having her take a bottle would be wonderful. Not to mention that taking her out would be less of a challenge. Right now I bring her milk to appointments and then we push the milk into her ng tube slowly with a syringe.
This road isn’t easy and it sure does makes me cry! I just know that in the light of all eternity, none of this in important really. What is important is that my heart is right before God even in the midst of these challenges. And even though I don’t want too… I really need to just lay this whole oral feeding thing down at the foot of the cross… give it to God and accept His peace. I also need to ask for wisdom moving forward and trust that God will be faithful once again.
So now to cheer myself up, I will post a picture of all our kids together…
Oh our precious children. Five gifts from God that we are so thankful for.
And I know God wouldn’t give us more challenges than we can handle, but Jason and I can say for certain, that we would n’t be able to handle any of these challenges without God!
Thanks for praying.