Small, frail and weak

Our sweet little Ava… she’s doing pretty good all things considering.  But when I was holding her today she just felt small frail and weak.   She really hasn’t gained any weight in the past couple of weeks and being so sick has drained any strength that she did have and she just doesn’t have any reserve left at all.  She can’t take much before she gets tired and irritable.

She did have lots of smiles for everyone today which was wonderful, but when our Sarah saw her this afternoon finally – after not being able to see her for a week – she said that Ava didn’t look pretty anymore.  Ava’s eyes are rather red, and she’s much bluer around her nose and mouth.   What she really needs right now is a blood-transfusion as her hemoglobin is low.  Unfortunately they are weighing the risks for one as introducing new blood to her system could result in her developing more anti-bodies against foreign bodies in her system, and that would include a new heart.  We don’t want that, because the more anti-bodes she developes, the more high-risk a transplant becomes.

The good news however is that because Ava is on CPAP now for sleep – we have switched teams at the hospital.  We had been followed all along by the Single Ventricle team – a team that follows the care of all the babies born with only half working hearts – either the left or the right side –  but now that Ava’s main problem’s are mostly related to her lousy heart function, we are being followed by the Heart function team.  I love our nurse practitioners and Dr’s on the SV team, but as I said to them, I’d rather be an average patient on the Heart function team then the patient in the worst shape on the Single Ventricle team.  🙂  And to be honest, the Dr we saw today with the Heart function team was more optimistic about Ava than anyone else has been lately.  He was confident that if we can get some issues with Ava sorted out – primarily her fluid balance – then hopefully she can be stable for a while.    It was good to hear, because it’s good to have hope, even though he doesn’t know Ava like the SV team did.   But we are taking the change from the hands of God knowing that He knows what’s best.

Actually I have to share that the Heart Function team is the new sanitized name for the team that used to be called the Heart Failure team… ha!   Gotta love name changes, but in this case I agree that Function sounds better than Failure.  Failure does NOT have a nice ring to it.   Just like we are also being followed by the PACT team – the Paediatric Advanced Care Team, which used to be called the Palliative and Bereavement Team.  Aren’t names wonderful? 🙂   Now the PACT team has a name that is practically meaningless, but at least it doesn’t sound so grim.   These new team names seem much more optimistic, even though they are still dealing with the same sad stories.

The PACT team has actually been amazing… they are great to talk to and have supported us in many ways, and one way is that they provided a professional photographer to come and take a family picture of us with Ava.   We had never had one done and I would have regretted it forever if we didn’t have a pic of all of us together.   So the photographer came last week and I’m so glad it’s done and I can’t wait to see the end results.  The team has provided alot of support – and not to worry – it doesn’t at all mean we’ve given up on Ava – it’s just that we understand that she can’t live with her heart the way it is now, and it is failing.  So her death is something we might have to face.  Hopefully not if God wills a replacement heart for her, but this team has been a huge help to us so far, and will be if we hit a time of crisis.

In other matters – the kids had their final school wrap-up “Fair” today – and we are once again thankful to the Ronald MacDonald School where are kids were able to finish out their school year.   They preformed a play today that was really cute and I’m glad going to school has been able to keep some ‘normal’ in their lives.

So back to Ava – she might be frail and small and weak, but I know who is carrying her and we have faith.   Thanks for praying!!!!

Isaiah 40:11

 He will tend his flock like a shepherd;
 he will gather the lambs in his arms;
he will carry them in his bosom,

AMEN

A day that ended well

It’s such a relief that this day ended well because it started out kinda crazy!    When I got to the hosptial this morning I was informed that during the night Ava’s heart-rate and respitory rate had risen and they got a little worried.   Then when they changed her diaper, they found blood in her urine… Ava!!

So they did some blood work and tested her urine and then because she’s still coughing, they repeated the nasal swab that we had done Wednesday and she got another chest x-ray… those horrible chest x-rays that baby’s get that make them cry and cry.    So basically she got a full work-over.

And just in case she was coming down with a new virus, we got moved out of the step-down room that we were in, to a single room right across the hall for droplet contamiation.    So we spent a nice quiet restful day in there while Ava slept and slept.

I had them check the results of the swab early afternoon and it came back clear, no new viruses!   Her chest x-ray was also clear and there was no more blood in her urine.      Her blood-work had shown that her white blood cell counts and nutrophils  were up a bit, and her urine did show a touch of bacteria, but since Ava woke up from her long nap happy and comfortable  and didn’t have a fever, they didn’t start her on antibiotics and they lifted the contact restrictions and moved us back into the shared step-down room to make her care easier for the nurses on tonight.

So I’m happy to say that things seem to be good with our sweet little Birdy now – praise God.

But please pray for aanother sweet little girl that I’ve met while I’ve been here – little Bella is 3 and isn’t doing very well tonight.  It’s really hard to see another family struggle, especially as Bella also is single ventricle like Ava.

For us, I’m just praising God for a good day for our family, even though we aren’t together and I’m so thankful to Him that this day has ended well.

Spoke too soon…

Well I know that I just posted that Ava was doing well in my last post, but apparently I spoke to soon.  The next morning after that post – yesterday morning – Ava woke up with a hacking cough.. oh no!   And then I noticed that it looked like Ava was trembling while she was sleeping, and sure enough she was breathing much faster than her norm and seemed to be working a bit harder to breathe  as well which didn’t make me happy.

So to be on the safe side I called her pediatrician and made an appointment to take her in that afternoon, but just to make sure I called our Single Ventricle nurse at Sick Kids to see what she thought, and she said that rather than take Ava to the dr, she should go to emerg.  So I packed up everything, and Jason drove us to the hospital.

And they were really good to us.   On one hand  – with Ava being who she is they don’t want to take any chances, but on the other hand, she wasn’t presenting that bad – not like the kid next to us with a terrible case of croup.  That’s the thing –  here I take Ava who I don’t want to get sick,   to hang out with the sickest kids in the city!  But thankfully we were in the isolation room so I kept that door closed.

They ordered a chest x-ray for her to see if anything was brewing in her chest – but thankfully her lungs are clear.  And her oxygen saturation levels are normal, so no pneumonia or anything at this point, which is fantastic.   And since she had just had an echo on Friday they knew she wasn’t in heart failure.   So after telling me that if any little thing changed with her or if I was concerned again to come right back, they let us go home.

But I have to admit that the cough does scare me.   Mostly because it takes so much out of her to cough and after a bad bout of coughing she typically breaks into a cold sweat.   So it’s stressing her out, and I just don’t want her stressed because that is definitely not good for her heart.   We want her to stay healthy so she will be in good shape for her heart catheterization which is only 2 weeks away!

So we pray.    And trust that God will be faithful yet again.  I love how verses come to mind in moments like this and this time it’s from Colossians… chapter 1…

1He is the image of the invisible God, the firstborn of all creation. 16 For by him all things were created, in heaven and on earth, visible and invisible, whether thrones ordominions or rulers or authorities—all things were created through him and for him. 17 Andhe is before all things, and in him all things hold together.

God holds all things together – isn’t that the coolest thing?  I love being reminded of that, and I love the image of the univerise  breaking apart if God withdrew His hand.     So this God who is so big and so able,  can certianly hold together my little baby’s heart.   And I can go to sleep tonight in peace trusting Him to do so.

Amen.

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!

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!

Home sweet sweet home..

Oh it’s so good to be home!

Yesterday Jason and I went back to Toronto to Sick Kids for Ava’s appointment at the Single Ventricle Clinic.   It was a bit of a heavy trip I had been told the night before to come prepared to be admitted.   Even though a small part of me wouldn’t mind being back at the hospital so the nurses could care for Ava all night and I could sleep (oh sleep!!!) , I started realizing as we were driving there just how much I was enjoying being home again.    Maybe because I’m slowly starting to feel like a mom to my other kids again and it’s been so great sleeping in my own bed.   Then there is how much I’m enjoying reconnecting with friends and family and I’ve even been out shopping once in the past two weeks.   Just once – but still!   So once again, I had to surrender everything to God, tell Him once again that I trusted Him even though I was so sad at the thought of going back and went and packed my bags.

The reason they had talked about having to admit Ava was her lack of weight gain,  which has always been slow.   And so because of that had also mentioned the possibility that she might need a g-tube so we could start doing continuous feeds to help her gain weight.     However, even just looking at Ava yesterday both Jason and I thought she looked so great that we were sure that they wouldn’t keep her.  And sure enough when our nurse practioner saw her, she thought she looked great too!    Especially the little bit of chub that Ava has put on her thighs,  there is something about a little bit of chub on a baby that just makes my heart melt and nurse practitioners of single-ventricle baby’s very happy.

Anyway, Ava had the full work-over at the clinic,   blood work, an echocardiogram and a thorough check up by our nurse practioner and it turns out that Ava is actually gaining at a rate of about 25 grams a day!    Which is not as much as they would like, but since she also grew 2 cm since she was discharged, everyone was happy with her progress and there was no talk of admitting her.

Now we still have put in a requisition for a g-tube.   Just because Ava’s ng tube probably isn’t going away anytime soon and a g-tube would probably be safer and better in the long run.  The good things is that as an out-patient it will take 5-6 months to get it and the hope is that by that time she won’t need it anymore and we can just say no.   I hope that in 6 months she will be able to take all of her food orally, and so we can say no, at least that  is my dream and my prayer!

And then there is our little Birdy’s heart.   Unfortunately the echo we did yesterday, compared to the one we did just before we left the hospital, showed that her heart’s function is decreasing, which isn’t good.    It’s just that with her current configeration her right ventricle is over-worked as it has to pump blood to two places,  her lungs as well as her body.   And like I’ve mentioned before,  your right ventricle is just not designed to pump to your entire body,  it’s smaller than the left side as its meant to pump blood solely to the lungs.   But in kids like Ava with hypo-plastic left heart – where the left ventricle is non-funtioning  – they have no choice but to try to make the right side do it all.

So they are keeping a close eye on her heart, and hopefully if the function doesn’t decrease more,  they will seriously look at doing her next surgery sooner than later, as the next surgery will take some of the pressure off her heart.    She is booked for another echocardiogram in London next week and then in a few weeks we will be back to Toronto where they will do a catheterization on her heart to see if she is indeed ready for the next step.    Now, if her heart function decreases and she’s not ready for the next surgery, she will be admitted and be put on some heart medication to help her function and then we wait.   Which is not the route we want to go, so please pray that her function doesn’t decrease anymore, we need her heart to stay strong.

So.   As the cardiologist in London said to me last week, nothing with these single ventricle baby’s is easy or simple – and we can agree with that.  But we just take things day-by-day.  We still pray for strength everyday, and still just enjoy Ava day by day.  And it isn’t hard to enjoy her… she is such a sweet baby whois us usually awake and happpy, or sleeping, which she does quite a bit of the time.

Ava

And as for coming home last night in the dark, all I can say is that I’m thankful that Jason is such a good driver and could navigate the snow covered roads and the lack of visibilty with far more courage and tenacity than I ever could!  And once again God was faithful and heard our prayers and kept us safe.

So now as I prepare for another night where I get to stay up and enjoy it more than I should,  I can still say thankfully – I’m just happy to be doing it here at home, sweet home!

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!

This treasure in a jar of clay…

This sweet little treasure in a jar of clay…

DSC03451

Ava who is our treasure… created by God perfectly, just the way He wanted her.

Before we had Ava, our Pastor Norm preached a sermon on 2 Corinthians chapter 4, verse 7…

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us…

And Norm explained that we are those jars..  we are frail and easily chipped and cracked just like the terra cotta flower pot that he dropped on stage to surprise us all – and we are even easily shattered.   I know that I can certainly relate, but it doesn’t matter that we are frail, because God can use us and work through us.  And then He gets the glory, AMEN.

And for His own purposes, He chose Jason and I to be parents of another little jar of clay…  our sweet Birdy, who already has more chips and cracks than most others.

And a month or so ago it hit me, that I’m a mother of a child who has a single ventricle heart and who someday may need a heart transplant and it made me sad… she’s not going to just ‘get better’ like my other kids and I started feeling guilty for even having her and putting her through all that she went through… and it was a very low time for me, a bit of a valley.  And as I was coming to terms with this, a kind friend sent me an email in response to hear that I was feeling down.  She wrote this..

My heart aches for you, but also rejoices in your faith and that I know God knitted Ava together in your womb — He did not make a mistake —  He made Ava as he planned. He also chose you to be her mom — He chose you with purpose. He will not abandon her or you.

And it still makes me cry.  Ava is just as she is supposed to be.  And even though she’ll always be my little chipped jar of clay,  she still has an eternal soul and I pray that I’ll be able to share with her this truth that Christa found for her… (from Pinterest of course)…

she was placed

And I think I can speak for Jason as well when I say that we wouldn’t trade Ava for anything, or even trade this experience of having her and going through her surgery and recovery.  It’s been quite the journey so far and tomorrow we start another as we come home and learn to care for her at home, but once again we have faith in our almighty God.   And I think that we can sum up this whole hospital experience in these words from later in the chapter of 2 Corinthians…

So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light and momentary affliction is preparing us for an eternal weight of glory beyond all comparison.

So we can say, to God be the glory, and thanks for giving us Ava, just as she is!

We are here till we grow…

So it would seem that this little monkey…

ava

Needs to grow into her shunt!  She finally had her echo-cardiogram this morning and praise the Lord her heart function looked good – which is such a relief because that had Jay and I  really worried.

But now that they have ruled out that her heart isn’t working too hard, they’ve basically said that she is sending too much blood to her lungs because the shunt is too big – too big on purpose because it won’t grow and she will – and that is why her oxygen saturation’s are at higher levels than they would like to see for a baby who has had the Norwood heart surgery.

So the consensus today on rounds was that we have to stay here at the hospital until Ava grows into her shunt!    Oh man!  So does that mean days, weeks or months?  I have no idea.  Thankfully another cardiologist came by this afternoon and said that they really don’t want to hold us hostage here, and that if Ava is doing well in all other areas, that they would discuss her case with the team and hopefully we might be able to go home,  even though we would not meet the  protocol for sending home single-ventricle baby’s.  So all we can do now is pray and make Ava eat… lots.

And that’s not easy because although her tummy handles my milk just fine,  she can’t gain weight on it because it doesn’t give her enough calories and she uses up more calories than a normal baby would just by living.  And unfortunately her little tummy just can’t handle the extra volume she would need to make up for this – when they have tried to increase her volume she just throws it up, even though she gets fed over an hour.

So they supplement my milk with condensed formula for calories, but she doesn’t tolerate that well either,  so she still hasn’t gotten up past her birth weight of 8 lbs, even though she gets fed every 3 hours around the clock by her ng tube.   And it’s breaking my heart, but she’s having a hard time even sucking on a soother without gagging and retching so please pray that we can get over that hurdle so that she could start to feed orally… the occupational therapist was here again this week trying to get Ava to take a bottle but didn’t get too far, plus it really tires Ava out.

But her little vocal cord is starting to heal because Ava is getting louder every day, so hopefully we can do a feeding study before we get out here to see if Ava can drink non-thickened fluids without aspirating  – and that would open the door up for breastfeeding.   So many hurdles to jump over.

Thankfully she is doing well in other areas, and its so cool that Ava is now meeting our eyes!  My parents came down last weekend and my mom was so kind and stayed with Ava over-night and almost all of the next day to give me a little mini-vacation with my family and when she was here Ava started meeting her eyes and responding!   She was looking right at my mom when she snapped this pic…

avabyoma

And it’s so cool to see Ava start to meet these milestones, even though her prolonged stay in the critical care probably set her back bit.   But back to my parents, it was so great having them here last weekend and then we were blessed even more this week when friends came to  visit us yesterday and today.   We can’t tell you how much we enjoy these visits.  Our kids love seeing friends and Jason and I love it and it just makes us feel closer to home.  Just like when people send us emails or even leave comments on the blog,  we find  it all so encouraging, even though we might not always find the time to respond back.

So we are just going to get into a groove and take things day by day and pray that Ava will grow!