A Canadian Blue Solution

Sorry I haven’t blogged in a while.  This weather has been so cold and snowy that I just have wanted to sit under an afghan and read novels (not that I have) but still, I  just haven’t felt the motivation.  But tonight as I’m up waiting to feed Ava I though I would jot a few things down.    And I’m happy to say, we are doing good.  It’s surprising what at first seems so daunting, can now seem so  ‘normal’ .  We’re getting into a good grove with Ava and although caring for her is  still intense and time-consuming, we are doing OK.  And she is such  a good baby.    She did have a tough go last weekend and the first of the week – she was so upset and refluxing all the time like crazy – but I finally figured out that her daily dose of baby aspirin was probably hurting her sensitive little tummy, so now she is getting the aspirin after her morning milk and she is doing so much better… praise God.

And talking of prayer, I know that God’s people have been praying because Ava has been nursing again!   In the past couple of days she’s nursed quite a few times a day, which is wonderful.   And she’ still only nursing about 5 minutes at a time, but I’m not concerned with amounts right now, it’s more about her being comfortable and enjoying sucking and orally feeding like I mentioned in my last post.   So thank-you for lifting us up before the Lord, He has heard your prayers!

And I don’t think that I’ve mentioned that April 25th is the date of Ava’s heart catheterization, where they will go into her heart to test the pressure to see if she is ready for her next surgery.  So please pray with us that all will go well and that she will in fact be ready!!

And I’ve also been meaning to show you a pic of our very own IV pole that Jason made us.  The first night we took Ava home we needed a pole to hang her gravity feeds on as we hadn’t gotten an actually IV pole yet.  So Jason ran to the garage and came up with this…

hockeyivpole

Yes, the hockey stick IV pole.  Such a Canadian blue solution.  Don’t you love how men solve problems?   And it’s been great and it was even strong enough for Ava’s feeding pump to be attached to it.    It’s awesome.   Actually last week we Last week we had a real IV pole delivered, but Jason told me if we used it that he wouldn’t talk to me… haha.  Seriously though, I’m too attached to my hockey sticks.

So I’m just thankful that we made it through another day and that Ava looks so amazing and is doing so well, even though she does seem to fighting off a mild cold.      Here is a pic from a few weeks ago sans ng tube – as I had accidentally pulled it out…  my sweet little Birdy.

Ava

And we are off to Toronto again on Tuesday for another appointment with the Single Ventricle  Team at Sick Kids and Ava will get another echo,  but this time I have no fear that they will be keeping us and I’m not packing a single thing, ha!

So thanks again for everyone’s support and prayers, we are truly thankful.

Taming a squirrel…

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…

allthekids

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.

Amen.

Productive Paranoia

So I’m writing this today from the hospital in London – because Ava was admitted here yesterday… but not to worry, she is doing just fine.    Yesterday morning I called the Single Ventricle Hotline at Sick Kids in Toronto to talk to our nurse practioner there, because Ava just wasn’t right.  She had been vomiting with her feeds through the night and breaking out into cold sweats and was pale and listless in the morning.  So our NP told us to go to the hospital and had us call an an ambulance to make sure we got to the hospital safely.   And I’m glad we did because Ava was de-sating (her oxygen levels in her blood were dropping) and the paramedics were able to give her some oxygen on our way there.

In emerg I shared with the doctor that I had some concerns that her ng tube wasn’t in far enough and was causing her reflux and distress, so they ordered an x-ray right away to check placement and  then we just waited to see the cardiologist.  He came and ordered and echo, and thankfully we had gotten that one last week so they could compare.

Anyway, to make a long story short, the ng tube was a bit too high up, and so we could move it down, so her vomiting and reflux have stopped.   And her echo looks good compared to last week, but there is a tiny concern that her shunt may be slightly blocked.   Oh and her blood pressure is a bit high.  So we are hanging out here and waiting to see what Toronto says as the cardiologist here confers with them.

I’m a tiny bit anxious that Toronto may want us to come and hang out there for a few days, but if that was the worst of it,  it wouldn’t be so bad,   I could visit with all of the friends we made there! 🙂

And so our nurse practioner Sarah said yesterday, it’s best to practice productive paranoia with Ava (as opposed to paralyzing paranoia… hahaha).   She is very fragile, and as  the cardiologist reminded me again last night, 10 – 15% of single ventricle baby’s die before their next surgery, so we just can’t be too careful with her.

And I got some sleep last night as the kind nurse fed Ava all night for me and gave her meds.  How nice.

We are just waiting now to see if we can go home today,  and even if we can’t right away, we certainly aren’t suffering and I’m so glad that Ava is in good hands.

So thanks for all your prayers and hopefully will be able to update you again soon.

Thanks again for tracking with us through Ava’s journey!