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!

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Anything you want…

For anyone who has spent time at Sick Kids, you know it’s a pretty speical place.    So I’m posting their latest ad here as a tribute to them and everything that they did for Ava..  and are going to do for her in the future.  It gets Jason and I every single time…  please watch it for us.  🙂

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!

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!

Getting by…

We’ve made it through a week and have lived to tell about it!   Thanks to everyone who has helped us this week by dropping off meals,  or yummy goodies,  giving the kids something to do (Thanks Kim!) and for my mom who came and did five loads of laundry today and Jay’s mom for taking the kids and the list goes on.

And even though I’m still not resigned to getting only 2 hours of sleep at a stretch, we think we may have found a work-around where Jason does Ava’s midnight feed so if I got to bed early I get a 5 hour stretch of much needed sleep – yahoo!!!

And Ava is getting lots of cuddle time with her siblings..

SarahAva

And Sarah isn’t back at school yet.   Even though her school is fairly large, she is the first there with diabetes that needs help managing it.   So we are trying to work with them to find a solution to her eating her snacks at scheduled times,  checking her blood sugar at lunch and eating her afternoon snack.   It struck me the other day that if we weren’t dealing with Ava and her heart that this blog would be full of how our lives have changed dealing with Sarah and her type 1 diabetes, but Ava is rather trumping things right now.  But life has changed and I still am so greatful that Jason has taken this on and when it comes time for him to go back to work… well… let’s just say I’m not looking forward to that day.  And I do plan on sharing much more on the diabetes thing when I get a chance.  Thankfully Sarah is a trooper and although it’s made her grow up a ton,  I’m just so greatful that she is a strong girl and for the most part is dealing with everything well.

And thanks everyone for praying.  When things seem over-whelming, sometimes I am flooding by a sense of peace that I know can only come from God and I am so greatful for everyones prayers.

We are blessed.  This is not an easy life, but day by day we are getting through, praise God.

6 weeks of survival…

Ok – so we are 3 days into being home and I’m already exhausted…. oh dear.    And this is with Jason still home and my mom here and people bringing us dinners… scary huh?   It’s just that caring for Ava doesn’t leave a lot of room for sleep at night – I’m up for an hour at midnight,  feeding Ava, giving her meds and then pumping.   And then again at 3:00 am for at least a half hour feeding her again and then again for another hour around 6:00 am feeding her, giving her meds and pumping again.   Phew…

And with her ng tube,  feeding her is pretty slow, and it has to be slow or else she will throw everything up.   At the hospital they used an electric pump that just pushed her milk through her tube into her tummy over an hour.  But  since you can’t go home on a pump, we are using the gravity system instead which is a bottle that is attached to a tube with a drip chamber.  You hang the bottle upside down, adjust how fast it drips into the tube and let it go.  Except gravity is tricky because it can just stop when the pressure gets to high, or it can run through too quick,  and so it needs to be watched pretty close and because of that I’ve stopped using it at night.   I’ve tried, but night number two I woke up to realize that Ava’s entire feed hadn’t gone through at all, the milk was stone cold and she was starving.  I was so mad!    But another reason not to use it as night is just for safety,  if she somehow pulled her ng tube out, or if the milk started flowing too fast it could choke her.  So now at night I have to manually put the milk in a syringe and push it through the ng tube which I try to do over 40 minutes.  It’s nothing like feeding a normal healthy baby.  Nothing at all like getting up in the night and taking your sleepy hungry baby to bed with you and lying there nursing the baby  as you both fall contented back to sleep.   I wish.

And Ava still isn’t regularly breastfeeding…  which is a blog post in itself so I’ll chat about that later.

In good news, we spent yesterday afternoon at the hospital here in London so the cardiologist here could get a baseline on Ava.  She got a chest x-ray (poor little monkey) and an EKG, an echocardiogram and some blood-work.  A full work-over and thankfully everything looks great.   The nurse practitioner here in London was wonderful and I’m so glad that we live close to a good hospital.  We will be doing shared care, so next week we go back to Toronto and then back again in a few weeks to London.   We see each place once a month I think so every two weeks Ava will be seen by a cardiologist.  We will also be visiting Ava’s pediatrician here in London and we have a nurse that will come to our house once a week to check her out as well, so hopefully nothing falls through the cracks during this ‘interstage’ that Ava is in between her first two surgeries.   This isn’t a good time for single-ventricle baby’s as I think I mentioned before – they are very fragile with not much resistance so it will be nice to get through this time till her next surgery.

And that is where my six weeks of survival comes in.    Even though we are home, it doesn’t feel like home because I’m not picking back up my normal life… no baking, or shopping or cleaning or cooking, and it doesn’t feel that good.  But then after chatting with my wonderful caring and supportive husband tonight – who himself has had his hands full caring for the kids and trying to sort Sarah’s diabetes stuff out so she can go back to school – I realized that it’s kinda like taking your first baby home.  I always say that the first six weeks with a new baby is often just about survival, as you learn your new baby and get used to sleepless night… and that thought cheered me up because that’s kinda like life for us right now.   These first 6 weeks will likely be tough.  But as Jason says, she hopefully will get stronger every day and things will get easier and maybe even by the end of March we will be talking about her next surgery which would be awesome.

So it’s just about taking this day by day, sleeping when I can, not trying to do too much and just realizing once again that this is a moment in time.  God will get us through it.  It’s tough now, but I can hardly wait till we can look back in a few years and say, wow, remember when we first brought Ava home and how with the help of friends and family and by getting our strength from God, we got through.

And it is good to be home.   And I’d rather be here than at the hospital.   So I hope I’m not whining,  I just need to start this 6 week count-down and keep my eyes on the prize of getting her bigger and stronger.  So please bear with me, I hope I don’t get too grumpy and I’m sure eventually all will be OK.  🙂

We’re Home!!!

Wow, after 7 weeks of being away, we are finally home and it feels wonderful!!!!  We thought we would never get out of Toronto on time yesterday, because there were alot of lose ends to tidy up as Jason checked out of the Ronald MacDonald house and I tried to leave the hospital.     And even though Ava didn’t love the trip home – her first trip in a car seat – we still managed OK.  And I think Ava likes home.  I sure do… I can finally relax!    Well kinda, in between giving Ava meds 8 times a day and pumping and trying to nurse her and then tube feeding her 8 times a day,  we are a little bit busy over here.

But we were happy to see our wonderful neighbours actually missed us and we were welcomed home by this…

welcomehome

And there were balloons and streamers all over our fence outside and a gift inside and another poster…

poster

I will say it again, we have great neighbours.

And we also had to put up a sign on our doors asking for healthy visitors only please… which feels a bit snooty, but the fact is that Ava just can’t get sick – because if she does she will end up in the hospital.  Even tonight she was breathing a little bit too fast so I had to call the Dr on call at Sick Kids and thankfully she started breathing slower, but I have to keep an eye on her and he was talking about adjusting her medication, but even something as simple as that could land her back in the hospital which is something we wish to avoid for obvious reasons.

So we thank God for bringing us home and together again, and pray extra hard that God will keep Ava healthy until her next surgery.

I get to sleep in my own bed again tonight with my baby right there with me… hurrah!

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!

So the plan is…

The plan is that we are being discharged Monday!   Monday!  After spending 68 days here at Sick Kids, we are being discharged and finally bringing Ava home!

Her tummy troubles and lack of weight gain had been keeping us here, but things seem to be smoothing out and Ava is gaining weight consistently and tolerating her feeds with very little retching and vomiting.  She’s very stable cardiac wise and other than her high oxygen saturation levels  which we can’t do anything about anyway, there is really nothing more than can do for her at this point, so it’s very exciting that they feel she is finally ready to go home.

But we’ve had a little set-back in the nursing department.    I’m not sure why but Ava hasn’t been willing to latch for most of  today, but I’m not losing hope yet.  It’s hard because she is older and she gets distracted and frustrated easily, and because of her over-active gag reflex, she has to be pretty relaxed before she will latch on.    I just know it’s going to be a slow road to get her to the point where she can do a full feed from me.  She doesn’t have much stamina and when she does latch on, 5 minutes of nursing pretty much does her in and she falls asleep,  so between that and her getting frustrated,  I know I have my work cut out for me.    So we still have to feed her via her  NG tube and hope that as time goes by and if we can establish breastfeeding, she’ll keep taking more from me and less from the tube each time until we can take that horrid thing out.   And that is my goal, to get it out for good!

But still, we are going home… wow.  I’m excited but it’s going to be  a crazy place!  With having to feed Ava every 3 hours around the clock and keeping up with her med schedule, and recording her feeding and diapers and her weight and taking her to numerou.s dr’s appointments, life is going to be busy.  And that doesn’t even include taking care of Sarah and her diabetes…. whew

But we will be together all 7 of us living as family for the first time and that will be wonderful.   And this busy time won’t be forever and I’m just grateful that God has gotten us through so far and I know that He will continue to be faithful – just like He has been faithful so far.

But Monday just seems to far way  – I wish the plan was for us to go now!

Tears of joy…

Ava did  it!  She latched on to me last night and took 12 ml and today at noon did it again and took 16!    When I was looking down at her at noon I felt myself tearing up…  with tears of joy and thanksgiving to God.   Nursing her has been my dream from the beginning and having it finally realized is just amazing.    And after all she has been though, I can’t believe she still wants to and even has the ability!

It was actually quite cute last night because every time she got a mouth full and swallowed she opened her eyes wide in surprise…  such a new experience for her to have something in her mouth and swallow.     And after two long months of being intravenous or tube fed, I’m just glad that she enjoyed it and went back for more.   And that was a huge concern for me, that somewhere along the line she would lose the association of being hungry and putting something in your mouth to satisfy that hunger –  because that does happen to quite a few cardiac kids – so getting her off to a good start now is amazing.

The lactation consultant came by to see us and so the plan is for me to try to breastfeed her every three hours or when she is interested, but to steer clear of anything that might give her negative associations.  So if she gets poked and prodded by anyone, or has any tests, we will just skip the nursing that time and go directly to tube feeding.  She has had so many people do things to her that she needs to build some trust and nursing needs to be a very safe place for her.

Talking about things being done to her,  after the feeding study yesterday I had the privilege of putting her ng tube back in.

Hated it!

There’s nothing like sticking a piece of flexible tubing down your child’s nostril to show them you really care.    Hopefully she won’t remember that.  And hopefully if she keeps nursing like a champ and getting a bit more every time, the ng tube will soon be a thing of the past.   Here’s hoping.

Isn’t God amazing?   I’ve been told by so many people that nursing probably wouldn’t work out for us it sure hasn’t been fun pumping for the past two months, but in God’s perfect timing things seem to be coming together.   And even if things go down-hill from here (we are still in the hospital so only know how to practice cautious optimism, haha )  I will always carry with me the fact that I got to breastfeed her.   But I can’t wait now to move forward.

Thanks again for your prayers.  We serve an amazing God!