Today was thankfully a pretty good day for Ava. I went to the hospital early this morning – around 7:30 am – because Ava is typically awake at that time and then is usually ready to nap again by the time I get to the hospital around 8:30 am. But due to Murphy’s Law, because I went early today, Ava was still sleeping. OF course. But she woke up soon after and we cuddled and I took her for a walk. Then she slept again.
And when she woke up again later in the morning she seemed happy and rested so we decided to have some fun with food Now it’s sad that Ava is 8 months old, but really doesn’t eat orally. She still gets all her food pumped in her through her ng (nasal gastric) tube. Through the ng tube she gets fed my breast milk that has been fortified with formula so that the milk has more calories. This is because fluid is NOT Ava’s friend, so they have to make every drop of milk they give her count. And then to make it easier on Ava’s tummy, she gets fed continually, only 27 mls an hour, 20 hours a day. Not that much huh? I think it’s barely enough and the dietician talked to me today about concentrating Ava’s milk even further, so they will try to do that next week and hopefully Ava will tolerate it so she can get the calories that she needs.
Anyway, so we had fun with food today. Real food, because the problem is not that Ava can’t eat, it’s that she lacks the energy to eat. And now that she’s been tube fed for so long, the urge to eat just doesn’t come naturally to her. So we try our best to get her to eat whenever she is awake and feeling good. Today Lisa our Occupational Therapist came by and we put some banana in a mesh feeder for Ava so she could gum the mesh and get the banana flavour, She didn’t mind it and it’s good for her to taste things and smell things and experience different textures. And she also drank some milk from her sippy cup. Lisa even brought some puffs for Ava to try, but Ava wasn’t too happy about them and certainly didn’t eat them. But even then, they are still good practice for Ava’s fine motor skills and at least it was a new thing to touch.
But even our little fun with food session didn’t last too long as Ava got tired. But then the OT brought her a crib toy that you could touch and push buttons and it played music and lite up and Ava loved it! And then I felt bad that I hadn’t thought of finding a toy like that for Ava before… but it’s so different having a hospitalized child. When i had my healthy kids at home I didn’t have to work at stimulating them, it just seemed to naturally happen. But because every day is the same for Ava, I forget that even though she doesn’t seem to be growing older she is and I have to get more creative to find ways to stimulate her.
But then after all that Ava slept most of the afternoon away. It’s too bad because the more she sleeps, the more she misses in terms of developement, but it can’t be helped right now. Today the OT was encouraged that Ava is developing slowly in ways that she can, like speech and find motor control, but even then is NO way near where she should be for an 8 month old. But Lord willing if she gets a new heart we will just work hard to catch up.
We did have a little scare today as there is blood showing up in Ava’s diapers. It’s fresh blood so it could just be a fissure and she did get an x-ray and thankfully it didn’t show anything concerning. But now she is going to get her blood-thinner levels checked tomorrow because they did just go up on her blood thinner this week and if the dose is a bit too high then it could be causing the problem. So please pray that it’s a situation that is easily resolved that it doesn’t turn into a bigger issue.
I will leave you with a pic I took of Ava earlier in the week… our sweet little Birdy… who you can see is still a little puffy from all the fluid she is retaining.
Just patiently waiting and praying for a new heart!