Sorry to take so long to update on Ava’s echo-cardiogram that happened Monday morning, but I am happy to say that it came back saying all is well and her heart is doing fine. We were definitely happy to hear that.
And then there is Ava’s tummy which has caused her so much grief, and well it’s interesting. Because she had to be sedated for her echo, they didn’t let her eat for 4 hours before. But then the echo was an hour late so it ended up she didn’t eat for 5 hours. And then Sunday night, so the night before her echo, the nurse that was on (his name is Steve and he goes to Harvest Barrie – cool huh?) didn’t like how there was so much pressure when he tried to get air from her ng (nasal gastric) tube, so he ended up replacing it. And when they measured for the new one they ended up adding 2 centimeters to the length so it is a longer tube. And then for a brief time after these things happened, so Monday night and Tuesday all day and then last night Ava’s tummy has been wonderful and hasn’t given her much trouble at all. So was it the new NG tube? Or the little fast that she had, that gave her tummy a break? We’re not sure but it was so nice to have Ava happy and sleeping peacefully.
But then today happened. Oh boy. So it started when we were working with the Occupational Therapist to try to get Ava better at her occupation of being a baby. hahahaha. But seriously, Ava needs help learning how to take a bottle. I had mentioned in my last post that Ava used to take a soother when she came up from the Critical Care unit, but with all the gagging and retching she did while she was on formula has finely tuned her gag reflex and now she utterly refuses to take a soother or a bottle. But because the OT still thinks that Ava is not completely recovered from her vocal cord paralysis and still needs thickened fluids so she won’t aspirate, she tries to get Ava to suck on bottles with thickened formula, even though we all know formula hurts her tummy. But Ava needs to know how to take a bottle so she can do the feeding study where they x-ray her to see if she actually needs thickened fluids. Confusing I know.
Anyway, so Ava got a bit of formula from the bottle, and her session with the OT made her 12 pm feed late. So then to get her back on track we started her next feed on time which didn’t give her a full three hours between meals, which made her start to complain. And then to make matters worse I gave her a dose of pro-biotics (thanks for the tip Vanessa!!) at the same time, and I think the combination of formula, too much milk in general and then pro-biotics which the cardiologist fellow says can cause gas when you start using them – have all combined to give her a not so happy tummy again, oh man!!! This could be a very long night.
Now she seems settled for the moment, after a hot pack on her tummy and a bath and lots of cuddles, so hopefully it wont’ be that bad after-all. And please continue to pray for her weight gain, she did gain 6 grams from yesterday to today, but they are actually looking for a 30 gram per day gain and so we have alot of work to do.
But now you know her heart is fine and her feeding issues aren’t directly related to that, so that’s good, but we still have a long way to go!!