Still looking good!

Our little Ava is still looking good!    I took her to the cardiology clinic here in London on Friday and after the Nurse practioner and cardiologist looked at Ava on the outside and the echocardiogram showed them what they looked at on the inside, they agreed that she looked good, hurrah!  It’s always good news to hear.

And Jay and I certainly have no concerns with her right now…  even though she does have a cold, poor baby.  I didn’t really think that we would make it through all of March without getting something, especially considering our weather has not been all that it could be – and the other kids keep bringing things home.   Thankfully Ava seems to be tolerating this cold OK.   It’s all upper respiratory and even though it makes her cough and gag and sometime makes her vomit up her milk, she’s still growing and still gaining which is awesome.

And the count-down to her catheterization is on… I’m not sure how we are feeling about that so we can talk about that later.

Talking about Ava looking good, my mom had some fun last week and after giving Ava a bath thought she would give her a new hair-do…

Avahair

Oh our little Birdy – you do have an awful lot of hair!!!   And did you notice that her jammies have birdies on them?  I love it.

And we are so thankful that God is being so gracious to us and keeping her well.    I know that He is holding Ava’s little heart in his hands and that we can keep trusting Him every day.   So we praise Him alone that Ava is still looking good!

More milk and more sleep

So there have been some great developments in the sleep department over here.   As you all probably remember, we’ve been feeding Ava every 3 hours around the clock – so 8 times a day since we came home from the hospital back in February.    And thankfully Jason does the 6 am feed, but I still found it exhausting to stay up till Ava was done her midnight feed and then be up again at 3:00 am for an hour.  Thankfully I do get so sleep into 8 am or so in the morning – so it’s wasn’t like I wasn’t getting any sleep at all… however!!!

And then when we were at Sick Kids back on Mar 13th, the dietician had told me that if I added formula to my milk that it would increase Ava’s daily calories enough so I could skip one of her feeds… and as tempting as that was, I never could bring myself to do it.  First off, at that point Ava was refluxing like crazy, and then she got a cold and I just didn’t think her sensitive tummy would handle the formula well.  So I just resigned myself to our sleep-deprived schedule and consoled myself by the though that it couldn’t last forever.

So then I was very surprised and excited when we were back in Toronto last week and Paula – our amazing Nurse practitioner with the Single Ventricle Team – said that since Ava tends to tolerate volume over increased calories with formula, we could try to give her more of my milk per feed – and if she tolerated it OK then we could go on to skip a feed.  Now that sounded like a plan!  And with the dietician on board,  as soon as I got home I started trying her on the increased volume and it worked awesome.  Ava kept all the milk down no problem – and I got to start skipping a feed…  fabulous.

So now I skip her midnight feed so I can actually go to bed at a decent time (when I’m not blogging.. haha) and then I just get up once in the night to feed her and pump.   Jason still gets up for the 6:00 am feed (thanks hon!) and so I actually get some good sleep and I now feel rested in the morning – and that means I’m starting to feel like a normal person again.   And my mom is here today and she said that she can tell I’m sleeping more because I’m more alert – and probably not as touchy – although she’s nice enough not to mention that. 🙂

And our little Birdy is growing, slowly but surely…. she is now 11 pounds 3 ounces!   She is definitly getting bigger,  can you tell?

birdyeasterdress

And I just praise God that He provided this solution – and I think everyone here is benefiting from the fact that Ava is getting more milk and I’m getting more sleep!

We’re back…

So we are home again!   The cardiologist came to see me about 4:00 pm yesterday afternoon and said that all was well, both he and Toronto were happy with Ava and we could go home.    She had tolerating all her feeds perfectly after we moved her ng further down,  and even though her blood pressure is still a little too high, they have increased the dose of one of her meds so hopefully that should help.      I was a little nervous about the increase because she was on the highest dose of that drug already for her weight and now we have to worry about kidney damage…  yuck.  But as my mom says, there is no such thing as a medication without side effects and the reality is, little miss Ava is on a lot of meds, but at this point there really isn’t much choice so we just have to hope and trust that they aren’t ruining her rather than helping her.

And I think that I can say that I learned a few things through this.   One is that I have to make really sure that Ava isn’t being stressed in any way.  I think in bringing her home I was a little bit too relaxed in that she seemed so healthy and I was sure she was going to be fine.    But it’s just a reminder that I have to watch her like a hawk and keep better track of all the things that are going on with her so that patterns are easily identified – and through those patterns I can catch things quickly before they become big problems.   Thankfully it wasn’t a big issue that brought us to the hospital,  and a quick tweak seemed to fix it so that was very good, but I would rather avoid going there all together if possible.    It’s funny in a way, because the nurse practioner from Sick Kids had said to me just the day before that often these little single-ventricle babies have to make trips to the hospital  in this ‘inter-stage’ between surgeries  to get a tune-up.   They are there for a couple of days and then they go on their merry way again and hey – in the grand scheme of things, there is nothing wrong with that.

So we are home and back to our routine and it’s weird because now I seem to fully wake up at 3:00 am and have a hard time going back to sleep after I’m done feeding Ava, go figure.

And on another note, things seem to be moving in the right direction for getting Sarah back to school.  Jason met with a nurse from the CCAC yesterday so they could access Sarah and I think at least for the first bit there will be a nurse that goes to Sarah’s school at lunch every day to help her check her sugar levels.  And today a public health nurse is going to the kid’s school to do some training with the staff on diabetes so Jason is going there for that as well.  Training of the staff is the biggest hurdle in getting her back,  as they all want to feel comfortable with her and want to know what signs they should be looking for in terms of sugar highs and sugar lows.  So I’m so glad this is happening because we certainly don’t want them to be worried all the time!

So hopefully things should all work out well and Sarah should be back to school on Monday, although I don’t think she has minded her extended vacation.  And poor Sophia is going to miss Sarah so much!  Those two just play all day together and it will be sad to have to separate them.   It has been cute though, they play they are nurses, or that Sophia is a mom with a baby in the hospital.   And once I even over-heard Sophia say, “Pretend that I have diabetes… ok?”  Oh dear, well maybe not so cute after-all.

And then next week Sarah and Jason are going to meet the London diabetes team as our care has now been transferred from the team at Sick Kids to London.   Oh so much going on!  Once again, I am so grateful that Jason is managing Sarah through all of this!  I joke that sometime soon we are going to have to cross-train on the girl’s care, but for now I am so relieved to leave all the carb counting and insulin injections and appointments to him.

So that is where we are at.   And can I say yet again, that everyone’s support and concern for us has been so encouraging! We feel so loved and cared for, we are so blessed to be part of such a caring community and we appreciate it all so much.  And hopefully we stay out of the hospital for a while, because it really is good to be back!