Cath Today

Please pray for Ava as she is waiting for her catheterization!    She hasn’t taken anything by mouth since 4 am to prepare for it, so she is hungry, but they did put an IV in for fluids and she is sound asleep right now.     Hopefully they will come get her before noon – but hopefully not before daddy arrives.  🙂

For the cath they will go into a vein in her groin and send a long flexible rubber tube into her heart to do some testing to see if she is indeed ready for her next surgery.   She will sedated and of course there are always risks involved,  but I got down on my knees this morning and prayed for her and God has give me peace which I’m so thankful for.   Ava is His and I know she is in His hands.

Ava’s cardiologist from Sick Kids came by yesterday and in his opinion this cath is being done to close to her diagnosis of influenza back in April.    But he said if things don’t look favourable, not to panic,  but we would just do another cath again in a few weeks.   I have no idea if we will wait at home or here.

And in a surprise turn of events, our Cardiologist from London in at Sick Kids today, so he came by to see us as well which was very kind.   I once again am thankful for such an amazing team of caring people who Ava has around her.

So please pray that God will guide the Dr’s hands and that they will all be astounded at how well Ava’s heart is.    We would love to hear some good results so we can move forward, but on the other hand we don’t know what God’s plans for Ava are and we know that not-so-good news is also a possibility, but we will just take that as it comes.

Here’s a verse for Ava today..

Psalm 139:13-14, For you formed my inward parts; you knitted me together in my mother’s womb.   I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.

Thank you for praying and I’ll keep you posted!

Wasn’t expecting to hear…

When rounds came by this morning I certainly wasn’t expecting to hear that they are doing Ava’s catheterization tomorrow and hopefully here Glenn surgery next week!!!!  But that’s what they said and its wonderful news.  But now Jason and I are in a bit of shock and I’m getting a little nervous.    I mean it’s all well and good to wish for something but now that I know Ava’s going to have surgery again… well I’m going to try not to worry.

Now we need to arrange for Jason to come to Toronto and figure out what to do with the kids and everything, so it’s going to  be busy, but I know it will all work out.

So sorry this won’t be a long post, I just wanted to send an update.  Ava is doing OK, but definitely not 100% and I’m so grateful that there are no plans to send her home, but that they really want to fix her now.   With her heart function down and the fact that she is growing out of her shunt, there is no way for her to get better now without surgery and so I’m just glad that it’s going to happen sooner rather than later.

So please keep Ava in your prayers and hopefully we get some good results from her cath tomorrow!!

No plans yet…

Well I wrote a big post on my phone last night but couldn’t figured out how to publish it, which turns out is a good thing because things have changed once again today – as they have a habit of doing – so now I will write a new post here on the computer in the library.  Ava is having a nice snooze so I could run out for a bit which is always nice.

So, as of yesterday it seemed that the general consensus was that Ava was basically here in the hospital now until her next surgery.  The cardiologist was going to try to get her a new cath date earlier than the one that was going to be booked for the first of June and then surgery would get booked and we would just stay in the hospital until it could all get done.     Which in light of Ava’s decreased heart function and increased valve leaking seemed to be a good idea, especially as she has been on continuous feeds since we got here and increased lasix (diuretics).

However,  it seems the cardiologist is having a bit of a hard time getting everyone on board with this plan,  especially since Ava still does have a cough and it’s still not 4 weeks since she had influenza.    The cath people will only do an earlier cath if the surgeon will do surgery right away.  But we still don’t know if the surgeon is comfortable doing surgery since Ava still isn’t 100% and after you have an illness like influenza, it can make recovery more difficult.

So if that is the case, and we have to wait a week or two anyway, we might as well go home!  Which would be wonderful in one way, but scary in another, because now we know Ava is even more fragile then she was before and what if she gets sick again?   But there are risks to being here as well so who’s to say which is the better choice.

But in order to qualify for going home, Ava needs to be back on bolus feeds (being fed every three hours like normal) and her lasix need to drop down again to twice a day.   It will be interesting to see if she tolerates these things, because if she doesn’t we aren’t going home either.

So that is why I can say there are no plans.  There are too many variables and too many things need to be sorted out and figured out.

Please pray that this would all be happening according to God’s timing and that whatever is decided is for the best.   Ava and I are fine, it’s been nice seeing everyone here again and I’m meeting some friends today so today is going to be a good day.  We aren’t suffering at all, except we are missing our family like crazy which is a given of course.

But we will just take it one day at a time, and just chill and wait for someone to tell us what the plan is. 🙂

Best Mother’s Day Ever

Well first off…  Ava is doing good.  They still have her on continuous feeds (so she is being fed a small amount continually) and she is getting lots of diuretics and that has definitely helped her heart rate and breathing.   They didn’t really change anything for her today and we should have more information on what the plan is for her tomorrow when all the staff are back and they can have a group huddle about her.

So today is Mother’s Day.  And I wanted to say that I have been so blessed with my wonderful mother and a wonderful mother-in-law… praise God for putting these women in my life.   They have taught me so much over the years and have been there for us every step of the way on this Ava journey and I am so blessed.

But this afternoon I was alone with Ava in our room and I was feeling kinda blue and missing my family, and sad that we couldn’t be together for Mother’s Day.  I thought Jason was taking the kids to church and I tried phoning him afterwards and he wasn’t answering and was sad that I couldn’t even Skype the kids.

I had just resigned myself to a quiet lonely day, when in walked Jason and the kids!!!   Amazing!   My incredible husband drove down to Toronto with the kids just so we could be together today.  And how blessed am I to have such a great guy in my life that has no problem getting four kids ready, and spending 2 1/2 hours with them in a vehicle – well probably more like 6 in total – and being organized enough with Sarah’s diabetes, so we could be together.

We had a great afternoon together and enjoyed some Mother’s Day activities here in the hospital and now I can start the week energized and not down and depressed.

So thank you to my mother’s and my husband, and to great Dr’s and nurses here at Sick Kids.  We have so much to be grateful for today and that makes today,  the Best Mother’s Day Ever.

Crazy week

Well you’ll never guess where I’m writing this post from today… so I’ll tell you,  Sick Kids.

Ava and I and Jason’s mom came down yesterday for some clinic visits, but instead of going home, Ava got admitted and we are at here for at least the weekend, such a bummer.

So this crazy week for Ava seems to have all started last Sunday when my girls accidentally pulled out Ava’s ng tube just as I was going to get Ava ready for church for her dedication.  It was a bit stressful, but I got it back in, but even during her first feed with the reinserted tube,  Ava vomited up some of her milk.  That wasn’t like her, so by Tuesday after she had spilled quite a bit of her milk many times, I talked to both the Nurse Practioner here in London and in Toronto,   and we decided that her ng tube probably needed to be replaced.   So I replaced the tube and she seemed much better and that was good.  That was NG tube insertion number 1.

But the next day – Wednesday – when I gave her her daily dose of aspirin via her ng tube,  it got stuck in the ng tube and blocked it completely!!!  Oh man!  I’ve never had that happen before, but the tube I had put in the day before was a different ng tube than the kind we’ve always used from Sick Kids, and it had smaller holes and I guess I didn’t dissolve the aspirin well enough.   So after calling in some reinforcement, we replaced her tube again.    That was NG tube Insertion number 2.

But then her vomiting increased again and so once again I thought it may have been the tube, so Thursday night before her 11:00 pm feed, I inserted it once again.  Tube Insertion number 3.  And at that point I seriously thought that if we weren’t going to be going to Toronto the next day I would bring her to emerg in London, because the vomiting had been going on too long.

So Friday – we left for Toronto early and Ava had a GI consult for a G-Tube and they did say that she was a candidate, but in all likely hood she wouldn’t have the surgery until after her Glenn.  But during the appointment, Ava – who was sleeping in her stroller – didn’t look so good as she was breathing fast and her heart was beating faster too.   The nurse ran to get the Dr and I picked Ava up and she calmed down and was better by the time the nurse came back with the dr, so we finished the appointment and that was that.

Then Ava had her echo at 1:30 pm and after that we saw the Nurse practioner with the Single Ventricle Clinic.  But Ava was up to her old tricks and she was breathing fast again and her heart rate was fast and when the Cardiologist came in he said he wasn’t comfortable sending her home like this and wanted to admit her.

So she was admitted and the poor turkey had to get a chest x-ray to make sure nothing was brewing in her lungs and so before that, we once again inserted another ng tube – a Sick Kids one this time.  Tube insertion number 4.   But that tube just seemed to want to come out, so we inserted it again.  Tube insertion number 5.  But that tube had a hole in it, so had to do it again,  tube insertion number 6.  But the next tube, the wire didn’t want to come out, so that ng tube leaked from where it had scrunched up where the wire got suck.   So at 11:00 pm, we once again inserted another ng tube down my daughter’s nostrils.   Tube insertion number 7. Poor poor baby.

So here we are.   The plan for today is to give her more lasix and slow down her feeds to see if that takes care of the vomiting and the fast heart rate and breathing.   By Monday we should see if that’s enough.  If it’s not, it just might be the source of all Ava’s problems could be her heart, as her echo showed decrease function and more leaking from the valves.  Not good.  So if they are still worried about her heart, we will probably stay longer.

So please pray that it’s just a blimp that can be remedied with meds and rest.   God had a plan for Ava and for us, so even though here in the hospital is not where I want to be, I can be here in faith and trust.

God is good.  All the time.   I just never want to insert another ng tube into Ava’s nostrils ever again!

Amen.

 

Catch-up

I haven’t blogged in a few days,  it’s been busy here, so now I’m grabbing a few minutes to catch up.

So yesterday – Sunday – we dedicated Ava at church and it was so wonderful to be there with her and share a bit of our story.   And we felt really blessed to see all our family and friends who made a special trip to come and support us and we just want to say thank-you again to everyone who came… it meant so much.  And to our church family who hasn’t stopped praying, we are so glad you finally got to see our little Birdy and we so appreciate all your prayers and support as well.

And then Saturday, Ava was 5 months old, amazing!   And as of today she weights 12 lbs 8 ounces!   She’s growing slowly but surely.   And thanks to the fact that I’ve cut all dairy from my diet because of Ava’s cow’s milk protein intolerance, she hardly has any reflux these days.    And even though we would have liked to see Ava get her Glenn surgery this month, I know it’s all in  God’s timing and maybe the longer it takes to get her cath the better the pressures in her lungs will be.

Friday unfortunately, I had the wind taken out of my sails – sort of speak – when I found out that two of the children that had been on 4D – the Cardiac floor at Sick Kids –  the same time as us had passed away.   Their families had also been at the Ronald MacDonald house with us and it’s really tough any time a cardiac child dies.   I think what struck me the hardest is that I watched one of the moms just giving her all trying to help her 2 year old daughter get well,  only to have it not be enough in the end.    And that’s a lesson I need to learn, that with Ava –  or any of my children for that matter – no matter how hard I work,  my best efforts aren’t going to keep anyone here that God has called home.   He already has a plan for each of my kid’s lives just like Psalm 139 says in verse 15 & 16

My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

So I’m not being morbid, I just have to trust God and take each day with Ava and each of my children as a gift… even on the days when they don’t feel like gifts. 🙂

And then Thursday we saw Ava’s paediatrician who is just a lovely person and she was really happy with Ava and her progress, hurrah!   Now she did warn me not to take Ava to malls or anywhere else teaming with infection (hospitals?  haha)  but when I told her I was taking Ava to church on Sunday she said it would be OK.  And we kept Ava out-of-the-way on Sunday and people were careful not to touch her and hopefully that was enough to keep her from catching anything.

So I feel all caught up now… with my blog at least.   Even though it feels like I’ll never be caught up on sleep,  housework or laundry,  at least I can feel caught up in something!

Touched my heart…

Last week I received an email from dear friends of ours who used to be our neighbours for many years but have since moved away.   Their family suffered through the devastating loss of a newborn baby 7 years ago – so I know they have very tender hearts when it comes to babies. And I wanted to share some excerpts of what they wrote us…  

Hi Lisa, We want to let you know we have been praying for you guys from the Bahamas. We pray for strength physically, emotionally and spiritually for you and Jay as you take care and lead your precious family.   A few weeks ago we had a special dinner for baby Ava– we had heart shaped pasta.  We prayed for her heart throughout our special meal.  We decided that every time we spot a heart we will pray at that moment for baby Ava’s heart.  It may be a cloud in the shape of a heart or a rock or a shell or in a book.

Kezia has been making heart bracelets, they are adorable and are a great reminder for us to pray for baby Ava’s heart.  We would love to make and send heart bracelets to family and friends who are praying for Ava.  We thought if you could mention this on your blog with Kezia’s email kezia.dejong@hotmail.com anyone who would like a heart bracelet to remind them throughout the day to pray for Ava can email her with their mailing address and we would send them a bracelet.

This email touched my heart, right at that tender spot that makes you cry.   We praise God for friends like these who have never stopped praying for Ava and her heart and our family. Here is what the bracelets looks like, I love the hearts! heart photo

So if you would like one (I can’t wait till mine arrives!) please email Kezia and I know she would love to send you one – thanks Kezia!

How many times can I say that we are so thankful for the people God has placed in our lives?   I guess I just can’t say it enough, we are so blessed and God is good!