Fun with food

Today was thankfully a pretty good day for Ava.     I went to the hospital early this morning – around 7:30 am –  because Ava is typically awake at that time and then is usually ready to nap again by the time I get to the hospital around 8:30 am.   But due to Murphy’s Law, because I went early today,  Ava was still sleeping.    OF course.   But she woke up soon after and we cuddled and I took her for a walk.  Then she slept again.

And when she woke up again later in the morning she seemed happy and rested so we decided to have some fun with food     Now it’s sad that Ava is 8 months old, but really doesn’t eat orally.  She still gets all her food pumped in her through her ng (nasal gastric) tube.    Through the ng tube she gets fed my breast milk that has been fortified with formula so that the milk has more calories.   This is because fluid is NOT Ava’s friend,  so they have to make every drop of milk they give her count.    And then to make it easier on Ava’s tummy,   she gets fed continually, only 27 mls an hour, 20 hours a day.  Not that much huh?   I think it’s barely enough and the dietician talked to me today about concentrating Ava’s milk even further, so they will try to do that next week and hopefully Ava will tolerate it so she can get the calories that she needs.

Anyway, so we had fun with food today.  Real food, because the problem is not that Ava can’t eat, it’s that she lacks the energy to eat.   And now that she’s been tube fed for so long, the urge to eat just doesn’t come naturally to her.   So we try our best to get her to eat whenever she is awake and feeling good.  Today Lisa our Occupational Therapist came by and we put some banana in a mesh feeder for Ava so she could gum the mesh and get the banana flavour,   She didn’t mind it and it’s good for her to taste things and smell things and experience different textures.   And she also drank some milk from her sippy cup.    Lisa even brought some puffs for Ava to try, but Ava wasn’t too happy about them and certainly didn’t eat them.    But even then, they are still good practice for Ava’s fine motor skills and at least it was a new thing to touch.

But even our little fun with food session didn’t last too long as Ava got tired.  But then the OT brought her a crib toy that you could touch and push buttons and it played music and lite up and Ava loved it!  And then I felt bad that I hadn’t thought of finding a toy like that for Ava before… but it’s so different having a hospitalized child.   When i had my healthy kids at home I didn’t have to work at stimulating them, it just seemed to naturally happen.   But because every day is the same for Ava, I forget that even though she doesn’t seem to be growing older she is and I have to get more creative to find ways to stimulate her.

But then after all that Ava slept most of the afternoon away.    It’s too bad because the more she sleeps, the more she misses in terms of developement, but it can’t be helped right now.  Today the OT was encouraged that Ava is developing slowly in ways that she can, like speech and find motor control, but even then is NO way near where she should be for an 8 month old.  But Lord willing if she gets a new heart we will just work hard to catch up.

We did have a little scare today as there is blood showing up in Ava’s diapers.  It’s fresh blood so it could just be a fissure and she did get an x-ray and thankfully it didn’t show anything concerning.    But now she is going to get her blood-thinner levels checked tomorrow because they did just go up on her blood thinner this week and if the dose is a bit too high then it could be causing the problem.  So please pray that it’s a situation that is easily resolved that it doesn’t turn into a bigger issue.

I will leave you with a pic I took of Ava earlier in the week…  our sweet little Birdy… who you can see is still a little puffy from all the fluid she is retaining.

Ava pretty

Just patiently waiting and praying for a new heart!

One month

As of tomorrow, June 10th, I will have been in Toronto with Ava for a month, I can hardly believe it.     I just wonder how many more months we will be here…  I wonder.

I realized today that Ava has spent over half of her short life in the hospital… and it makes me sad.    Especially when we compare Ava’s life to our four healthy children’s lives and I’m just glad that she won’t remember any of this time spent in hospital.      Today we were joking today that she needs her short-term memory erased, because right now she is hyper-sensitive to people touching her as she’s afraid she is going to get a poke, or her nose suctioned and she flips her lid multiple times a day, my poor baby.

Last night didn’t help – the turkey pulled out her ng (nasal gastric) tube around 3:00 am and thankfully she pulled it all the way out, because if she had pulled it only 1/2 way out she could have aspirated as she is on continuous feeds.   And even though I slept over with her last night I didn’t hear a sound, the nurse just found her ng  lying on her chest in a puddle of milk when she came in to check on her.  So they had to reinsert the ng and she hated every minute of it.     But thankfully this week I am already slated to attend a g-tube (gastrostomy tube) class, where I will learn all about how they insert a tube directly into Ava’s stomach through her tummy so we can feed her that way.   And then I get to learn how to change the bandages and care for it…. yahoo!   Well, not quite.   But it will be a relief to have her ng off her face, but I’m not sure I’m going to like a tube into her tummy any better.     But the girl needs to eat, and she still isn’t strong enough to do all her oral feeds herself, although now that she is starting to feel better, we are going to try her on solids this week which is kinda exciting.

And we finally had a test done and heard good news from it which was another blessing!   Friday Ava had her GFR renal study (glomerular filtration rate (GFR) renal study) to check her kidney function as a test needed for her transplant work-up.   All she had to do was lie on a board so they could take pictures of her kidneys, but  I think she got it into her head that she was being restrained for an IV poke because she freaked out.  But eventually calmed down and fell asleep… good girl.   And the next day on rounds we heard that her kidney’s are functioning fine, praise God.  Which probably doesn’t seem like a big deal, but it’s a huge deal for us because we feel like we only seem to hear bad news about Ava as far as tests are concerned.   However, they also did a kidney ultra-sound and it seems that Ava does have some reflux coming up from her bladder,  which can cause kidney damage and urinary tract infections.  So that wasn’t nice to hear, but she is now on more meds to prevent infections.  My baby, the walking pharmaceutical company.

This week might be the week where Jason and I can sit down with the transplant doctor to find out if Ava is indeed a good candidate for transplant, and then we need to decide what direction to take.   I read today something that I had already heard… but it said that a heart transplant is exchanging an acute heart disease for a chronic heart disease.  Nice and reassuring huh?   Meaning that a heart transplant is NOT a cure all.  It’s just another journey that will involve anti-rejection meds for life, lots of clinic visits and a heart that will hopefully beat the odds to last more than 20 years.

So please keep us in your prayers as our family is happy to be together, but missing home and are not quite looking forward to a summer in the big city.   Thankfully we get to do this journey day by day (not month by month) and by God’s grace and everyone’s support,  we can face another week ahead with all it’s unknowns and uncertainties.

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.

 

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!

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.

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!

So tomorrow…

Tomorrow is the day… the day of Ava’s feeding study which I’m so nervous about.  For this feeding study they will give her a bottle of sugar-water and barium and take an x-ray video of her swallowing while taking the bottle.   This will show them whether or not her vocal cords have healed sufficiently for her to be able to drink thin fluids and not aspirate.

If the test shows that she is swallowing properly then that will allow her to start to learn how to breastfeed and she would also be able to start taking my milk from a bottle –   yahoo!  And hopefully that would lead to eventually getting rid of the ng tube!!!

And if her vocal cords haven’t healed and she still needs thicker fluids, well, I don’t know what we will do.    The hospital won’t thicken breast-milk because they have deemed the thickener needed to do it  ‘unsafe’ and so that leaves formula that has to be thicken with rice cereal – and the combination of those two hurt Ava’s  tummy so much and just make her want to throw up.

So please please pray that Ava’s vocal cords will have healed.  I so need to trust God with this and not stress because I know how I will feel if the news isn’t good.  So I’m not going to worry, I’m just going to trust a faithful God and know that He he will carry us through whatever the results may be.

And talking about removing her ng tube,  the other day when we replaced it, I snapped some pics of  Ava without it…

ava1

ava2

Oh my beautiful girl!!!   I just want that darn tube gone for good… oh Lord, please give this mamma patience!!!

So now to change the subject, we’ve been in Ward 4D now for a month!   And as I was walking back to the hospital last night after having dinner with Jay and the kids, I was kinda shaking my head at how adaptable us human’s really are.    It almost seems a bit normal now to be here and live at the hospital.   The nurses and other people here are even starting to feel like family, except others keep getting better and leaving, while we are still here, which is a drag.

I do truly  miss living with my own family, and I can’t wait for us to get home, but I guess knowing that this whole hospital stay is just a short moment in time compared to all eternity is really helping to get us through.   And instead of focusing on how less than ideal the situation is right now for our family to be separated   we just try to keep focusing on that point in the future when we can look back and say, “Hey – remember how God so faithfully got us through all those months at Sick Kids?”   Thankfully the days just fly along here and its crazy that  Jason and I came to Toronto December 3rd to have Ava, two months ago.  So much has happened since then that I feel like I’ve lost all sense of time.

So please pray again for tomorrow.  I am going to need a huge dose of God’s grace to sustain me if the news isn’t good – but again – her vocal cords have to eventually heal, but patience can be difficult when you feel you’ve already been waiting for such a long time.

I love how I can share all this on my blog and know that through it we receive so much encouragement.   Thank-you all so much for sticking with us and travelling this journey with us!!

Echo was good

Sorry to take so long to update on Ava’s echo-cardiogram that happened Monday morning, but I am happy to say that it came back saying all is well and her heart is doing fine.    We were definitely happy to hear that.

And then there is Ava’s tummy which has caused her so much grief, and well it’s interesting.   Because she had to be sedated for her echo, they didn’t let her eat for 4 hours before.   But then the echo was an hour late so it ended up she didn’t eat for 5 hours.  And then Sunday night, so the night before her echo,  the nurse that was on (his name is Steve and he goes to Harvest Barrie – cool huh?) didn’t like how there was so much pressure when he tried to get air from her ng (nasal gastric) tube, so he ended up replacing it.  And when they measured for the new one they ended up adding 2 centimeters to the length so it is a longer tube.  And then for a brief time after these things happened,  so  Monday night and Tuesday all day and then last night Ava’s tummy has been wonderful  and hasn’t given her much trouble at all.   So was it the new NG tube?  Or the little fast that she had, that gave her tummy a break?   We’re not sure but it was so nice to have Ava happy and sleeping peacefully.

But then today happened.    Oh boy.   So it started when we were working with the  Occupational Therapist to try to get Ava better at her occupation of being a baby.  hahahaha.  But seriously, Ava needs help learning how to take a bottle.    I had mentioned in my last post that Ava used to take a soother when she came up from the Critical Care unit, but with all the gagging and retching she did while she was on formula has finely tuned her gag reflex and now she utterly refuses to take a soother or a bottle.    But because the OT still thinks that Ava is not completely recovered from her vocal cord paralysis and still needs thickened fluids so she won’t aspirate,  she tries to get Ava to suck on bottles with thickened formula, even though we all know formula hurts her tummy.  But Ava needs to know how to take a bottle so she can do the feeding study where they x-ray her to see if she actually needs thickened fluids.  Confusing I know.

Anyway, so Ava got a bit of formula from the bottle, and her session with the OT made her 12 pm feed late.  So then to get her back on track we started her next feed on time which didn’t give her a full three hours between meals,  which made her start to complain.   And then to make matters worse I gave her a dose of pro-biotics (thanks for the tip Vanessa!!) at the same time, and I think the combination of formula, too much milk in general and then pro-biotics which the cardiologist fellow says can cause gas when you start using them – have all combined to give her a not so happy tummy again, oh man!!!   This could be a very long night.

Now she seems settled for the moment, after a hot pack on her tummy and a bath and lots of cuddles, so hopefully it wont’ be that bad after-all.     And please continue to pray for her weight gain, she did gain 6 grams from yesterday to today, but they are actually looking for a 30 gram per day gain and so we have alot of work to do.

But now you know her heart is fine and her feeding issues aren’t directly related to that, so that’s good, but we still have a long way to go!!