Happy Easter and an upgrade!!!

Happy Easter!  Christ has risen and Jesus is alive in me!  AMEN!

And finally, I have gotten around to updating our blog… Just the 6 of us hasn’t really fit for a while. 🙂

So now we are “6 and a half hearts” and I hope you’ll keep following us on our journey!

God Bless!

 

There and back

So yesterday we made the trek to Toronto again.  Except this time it was Ava and I and Jason’s sister Lija (Lija – the cool Latvian way to spell ‘Leah’ ) and we left Jason and the kids at home.  It worked out better that way so Jason could be in town for Sarah.  Plus, Jason is the morning king.  He wakes up at 6 am every day to give Ava her 6:00 am feed, he then gets the kids out of bed,  feeds them, packs their lunches and walks them to the school bus.  Every day.  He rocks.

Maybe someday I will venture to Toronto alone with Ava, but at this point I’m too tired to drive myself, plus I  enjoy the company and the help of having another person there with me.   So thank you Lija for taking the time off of work and taking us!  And we had a great day together and Lija was very good about me dragging her all over the hospital and talking to what seemed like a million people, she is a very patient person.

And the good news is that the Toronto team was very happy with Ava.  Every time they see her in clinic they remark that they’ve never seen her looking so good and it makes me so happy and grateful to God for His goodness.  And I’m happy to report she’s gaining weight and growing, which is fabulous.  She’s only in the 3rd percentile for weight, but for her height she right around the 15th percentile.   It’s a little surprising that she is a good height considering she has Turner’s, but we’ll gladly take it!    And her echo looked good as well.  It’s funny though because they couldn’t get a good look at Ava’s shunt during the echo, and the tech even had a doctor come and try…  and I came very close to offering to show them how I’ve seen other tech’s do it, but I refrained.   I’m positive I could do it, but if I couldn’t I would feel very silly. 🙂

Now, the cardiologist that is part of the Single Ventricle Team we saw yesterday was a bit pessimistic.   He didn’t think Ava’s heart function had gotten worse, but he mentioned that it hadn’t gotten better either.  I was surprised that they hoped it would get better and asked him if they really expected that,  and he just said that a few kid’s hearts do.   He also threw out the word ‘transplant’ which I found a bit strange as we are nowhere near having to think about a heart transplant for Ava at this point.   I know that for single-ventricle kids, a transplant is often the reality, but according to the Children’s hospital of Philadelphia, there are thousands of people in the 20’s and 30’s living with single ventricle hearts, which is amazing news, although even then they often have to deal with other health problems.   Thankfully Ava’s cardiologist –   Dr. Jaeggi – also came by yesterday and he was much more optimistic and pleased her with echo results, which was reassuring.

And so walking away from that appointment I felt that over-all,  things were positive.  And we don’t have to go back to Toronto until April 23 for Ava’s pre-cath appointment.  Her heart catheterization is on the 25th of April and the dr did say that if the catheterization went well and they feel that the pressures in Ava’s heart are low enough,  and she is strong enough to with-stand surgery, that booking her next surgery in May might be an option.   That would be amazing!  And they also said that no matter what happens with Ava’s heart, she will be so much better off after the Glenn Surgery  (You can read more about all three of the surgery’s here) and it will just be wonderful to have it done before summer.

So that was our Toronto trip yesterday.  We left at 6:00 am and returned at 6:40 at night, a long day, but a good day and it’s so good to know we don’t have it do it again for a whole month.  And I’m always greatful when we can go there, and then turn around and come back.

Amen. 🙂

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.

Oh good grief…

We are home, hurrah!  But talk about an emotional roller-coaster.   Since Friday, when our Nurse practioner told us to be prepared to have Ava be admitted back into Sick Kids, I was feeling down and sad about having to put Ava back in hospital,   but then by Sunday I became resigned and Jason and I were actually looking forward to getting some sleep. 🙂   And since it’s March break, we thought the best thing would be to take the kids with us so we could be together at the Ronald MacDonald House, so we packed everything up Monday, ready for a long stay in Toronto.

But then,  after the nurse and the dr looked Ava over yesterday, they pronounced her fit as a fiddle and said we could go home!!!   Our reaction was a mix of excitement knowing Ava was OK and being able to go home, but then also  frustration that we had gone through all the packing up for nothing.  And the biggest kicker is that I was so tired before, but then I got to add-on packing and un-packing to all of that… good grief.

However, we are so incredibly thankful that after Toronto reviewed all the echocardiogram that Ava has had since just before we were discharged,  2 from Toronto and 2 from London, they didn’t think they saw much decrease in heart function over the past month, which is such an answer to prayer.   And there is a lesson to be learned here… never again will I go down to clinic with more than an over-night bag!!!   And if we are admitted at a later time, well we can always drive back and get what we need.

And after talking with the dietician yesterday I think we have a plan for me to get more sleep.   Right now, Ava only gets breast milk through her ng tube every 3 hours, which although she is slowly gaining on, but she’s only in the 3rd percentile, poor little turkey.    So she figured out that if we add 1 tsp of formula to my milk every feed, Ava will get enough calories that I could skip the 3 am feed, hallelujah!  So the plan is to increase her relfux meds for a few days,  increase the amount I’m feeding her and so in about a week I should be ready to add the formula.  So maybe sleep will be coming my way very soon!   And although none of my other kids have needed formula, I have to look at Ava in a completely different light, certainly because her story is quite a bit different from theirs!

As well, up until now I have been trying to get Ava to breastfeed with very little success.  And unfortunately because I had such wonderful experiences nursing my other babies, when Ava cries at the breast, or gags and won’t nurse, I take it to heart and it hurts.  So now I’m really hoping to teach Ava to take a bottle, realizing that between the ng tube and the bottle, the bottle is the lesser of 2 evils.    My biggest concern right now is that Ava won’t ever take anything orally, and I don’t want to miss a window and have her tube fed for the rest of her life.   Even teaching her to take a bottle is going to be a long and hard road –  it already seems that she is afraid to suck – but I’m going to enlist all the help we can get and maybe if she gets comfortable sucking again, it will open the door to more breastfeeding, who knows.

Oh – and please pray for Aleeda… the little girl with Ava’s same heart condition who is waiting for a heart… I did a post about her here.   I saw her yesterday and unfortunately she’s not doing that well, but we know she is in God’s hands and He is trustworthy whatever is plan for her is.

So once again we are thankful for everyone’s prayers and support – and we know that God is definitely answering our prayers and we will just continue on this journey, one step at a time!

No wiggle room….

I am quite bleary eyed and tired, but I want to catch everyone up so I will try to do my best to make this blog post coherent and spell things correctly, but I’m not making any promises. 🙂

So to make a long story short, the echo we had yesterday in London showed that Ava’s heart function is decreasing, which is sad and not a good thing at all.   They compared yesterday’s echo with the one we had done Feb 20 when we were in emerg and there is a noticeable difference.   Now, we still don’t know if there is decreased function from the echo we had at Sick Kids last week Tuesday, as the pictures have been sent but not analyzed yet, but any decrease in function is  just plain concerning.

And the trouble is that they just don’t know why this is happening.   Some baby’s do so well with their little single ventricle hearts, and some don’t and it’s not something they’ve been able to figure out.  I really wish they could.

But through all this our London cardiologist was very kind and asked me how I thought Ava was.  I personally am not super worried about Ava, but she is having more frequent  spells where she gets clammy and I’m also noticing that her breathing is faster more often and those things do have me concerned.  They don’t like the clammy spells either so  yesterday they hooked her up to a Holter monitor that recorded the electrical activity of the heart for 24 hours, to see if they can match up any heart irregularities with the clammy spells that she has.   Perhaps there is a simple arrhythmia problem which can fixed, who knows.

And since our cardiologist also was talking back and forth with Sick Kids yesterday, we got a call last night from Paula, our Nurse practitioner there, and she said that they wanted to see us on Tuesday in Toronto, and to pack our bags and be prepared to be admitted and stay for quite a while…. and I think this time they might mean it.

As Paula explained, Ava just doesn’t have any wiggle-room – meaning she just doesn’t have that reserve that we all have that allows us to fight things off, or deal with pain or stress.     Ava is just not that strong, even though she looks fantastic.     That’s what our cardiologist told the Dr at Sick Kids, that Ava looks great clinically, but her echo is saying otherwise.   Ava’s good healthy looks are apparently misleading.

So I’m packing my bags with a heavy heart.   I’m still praying that we won’t have to stay, but it seems the writing is on the wall this time.  But like Jason says,  it’s not easy having her home either – although we love being here together as a family – Ava is exhausting to care for and neither of us are getting much sleep.  So if the hospital is the best place for Ava, then it’s where she needs to be and maybe it will be better for us too in the long run.

So I’ll just pack and trust, and hope that they can figure Ava out and that we can get that wiggle room back!  Like always, we’ll keep you posted!

3 Months old…

Ok so I’m a little late, but our precious Ava was three months old March 4th… and she is also 10 lbs now too which is exciting.   And sometimes I look at her and think that she looks so ‘normal’….

ava blanket

But then the other day I held her and just cried for the fact that she isn’t a normal healthy baby, even just for her own sake.     She is who she is and I know that, but oh, sometimes my heart just gets the best of me and I just wish that we weren’t on this journey at all, and that my precious Ava was born perfect and healthy and that we didn’t have any worries or cares with her.

And now Friday at 9:30 is her echo here in London where we will find out if her heart function is still deteriorating or not.  If it hasn’t, her test in Toronto can be scheduled to see if her heart is ready for her next surgery.    If it has  there is a chance we will be admitted again into Sick Kids because she may need to go on some heavy-duty meds to help her heart out.

But we are still trusting God – as I was saying to a friend the other day – we have to trust God as there aren’t any other good options out there.. haha, but so true! 🙂

And I’m so glad He is faithful and sure…

O Lord, you are my God; I will exalt you; I will praise your name, for you have done wonderful things, plans formed of old, faithful and sure. Isaiah 25:1 

We’ll keep you posted!

Back to school

So Sarah is back to school, much to her chagrin. 🙂   Thursday was her first day back and she had a great day, and then Friday morning she was back to her old tricks and saying she didn’t want to go – but thankfully Jason and I know that’s ridiculous because she adores her teachers and always says she had a great day when she gets home.

sarahbacktoschool

An it looks like things are going to go well at school.  Her classroom has an alarm clock now that goes off for her snack times, and at lunch-time she goes to the office with one of her teachers to check her blood for her sugar levels.  And I think for the first while a nurse from the CCAC will be there at lunch too to make sure Sarah checks her blood Ok and eats all her lunch.   And that’s important because she needs to eat her carbs so she won’t get a low.   We are so appreciative to our wonderful school that has been doing everything they can to make sure that those that are taking care of Sarah know how to recognize the signs of highs and lows and I’m sure it’s tough for Sarah’s teachers as it’s one more thing for them to think about in a busy class of kindergarteners, but they have met the challenge and have just been wonderful. (Thank you Mrs. Murphy!!)

And there is a ton to learn about diabetes and I know that I still need to learn a lot.  Jason has been doing so much with Sarah that I always refer to him, but I’m hoping that when things aren’t so intense with Ava that I can get more involved.    It’s kinda funny though in terms of God’s timing, because if Sarah had been diagnosed when life was normal and I had taken on the learning and Sarah’s care, I’m not sure her diabetes would be managed so well.   Jason is a bit of a diabetes dictator and keeps Sarah on track quite strictly.  One night when Jason went to bed early I gave Sarah a snack of sliced strawberries, about 1/3 of a cup, so maybe just 3 carbs and he nearly bit my head off when he found out because Sarah isn’t supposed to get bedtime snacks.   And the funny thing is she was saying to me, ” I really don’t think  I should be eating this” but I convinced her otherwise,  crazy momma.   Boy,  I really hate diabetes.  And Sarah has been saying that lately too – she just hates it and when she says it, it  makes me want to cry because I know it’s not going away.     But we press on.   And I had a great idea tonight when I went for a walk about exploring more about living with diabetes, so stay tuned.

And Sophia is getting a cold, oh no!!!  I should have known as she’s been wanting to nap a lot lately…

Sophiaasleep

Last week when Sarah wasn’t around to play with Soph went downstairs, but ended up napping down there instead of playing.  But  now that she had a cold I’m so worried about Ava, as Ava has been coughing more and spitting up.  I’ve been praying that God would protect her and I hope He hears my prayer because she just can’t get sick,  she can’t!

And this week is our echo…  so please keep praying that Ava’s heart function hasn’t decreased anymore.

Lots to pray for.    Thankfully strength, peace and joy are free when we ask God for them.  I always like to think of it as an exchange… here God, you take my worries and I will take your peace.   I can always give Him my weakness and He gives me strength.    And here is a verse for me right now as I sit here hating Sarah’s diabetes and wondering if Ava will be OK…

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9 ESV

What an incredible promise and what an incredible God we serve.

AMEN.