Miss Ava’s Tummy

I’m sure everyone we know,  including us, would like to know when we can come home.    And the honest answer is that we  have no idea.    And that’s because the biggest thing holding us here right now is Miss Ava’s Tummy.   Her poor little tummy is giving us so much trouble and because of that she’s not gaining weight like she should.   It seems that she tolerates my milk OK,  but every time they try to fortify it to add extra calories, she doesn’t tolerate it and so they keep having to go back giving her just my milk.    But she just can’t seem to gain weight on my milk alone because she’s burning through it too quick and she just can’t take the volume of milk that she would need in order to be able to pack on the pounds.   Now they are going to try to increase her volume starting tomorrow, but because her heart is already working too hard, they are fully aware that her circulation might not be able to deal with the extra fluid and so they would have to increase her diuretics, and of course we can’t go home on a higher dose of those guys.   So we are still here.

And one of the negative side effects of her not tolerating the formula that they added to my milk was that it was making her gag and retch, which has given her a super-sensitive gag reflex and now she won’t take a soother anymore.  Boo.

So tomorrow she is getting a sedated echo-cardiogram just to see how her heart is doing and hopefully her digestion issues aren’t related to her heart.   She is also getting her feeding study tomorrow afternoon to see if she still needs thickened fluids  because of her vocal cord paralysis, but with her gagging on her soother now, I’m not super confident that she will take the bottle like she needs to for that study,  it’s so frustrating!

So please pray for tomorrow.  If she doesn’t need thickened fluids that would open the door to taking bottles of my milk or even nursing and if her heart function is Ok then it’s one less thing to worry about.

Sigh… who knew a little tummy could give us this much trouble but we are praying and trusting that God will once again get us through this like He has so faithfully gotten us through everything up to this point.   We would really like to come home soon, that’s for sure!

And she’s 6!

So sweet Sarah turned 6 today!   It probably wasn’t the most memorial of birthdays, but thanks to Jason there were balloons and pancakes for her in the morning, and after breakfast Grandma and Sarah walked to the hospital to see Ava and I.   And there was a little something waiting here for Sarah….

Her very own bravery beads…


Here at Sick Kids, the kids can collect bravery beads, and there is a different bead for every test, procedure, poke etc, that a child might get.  And we’ve been collecting the beads for Ava while she’s been here.   And as you can imagine,  Ava’s bravery bead strand is about 3 feet long by now, which is kinda makes me sad in a way, but then there are kids here with miles and miles of beads.

Anyhow, so Sarah really liked Ava’s beads and whenever she saw them she would say, “But I’m brave too!” referring to all the pokes and needles she gets now with her diabetes.    So when I was talking to my wonderfully kind nurse Jessica yesterday about how Sarah loved the beads and how I was thinking of starting my own version of bravery beads for Sarah,   Jessica said that she deserved the Sick Kids beads because she was a patient here, so she put the above beads together for Sarah while I was gone for dinner last night.    Sarah loved it.  And it didn’t take her long to string them up…


And then I had bought her a ton of beads to have at home so that she can add a bead for every finger poke and needle she gets… and yes there are going to be a lot, but hey, if it makes her feel better than I will buy her beads until she’s 20. 🙂

Then she got some cuddle time in with Ava..


She had held her earlier in the week as well…


And Sarah is a such a good big sister.  At one point Sarah and I had gone out to get her a snack and when we came back Sarah wanted me to get her some water and ice from the kitchenette, so she said to me, “You go get the water, I’m going to the room to check on Ava.”    I love it.

She also had presents and cake – and yes, diabetics can still have cake – and I think she enjoyed her low-key birthday with her family.

Oh our Sarah.   You are brave and so strong and so sweet.   Your daddy and I love you very very much and are so blessed to have you.

Happy 6th Birthday Sweetheart!