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!

Advertisements

A tiny vacation

So I’m pleased to report that Ava still is doing amazing.  She is spending quite a time off her CPAP these days and she is happy and full of smiles.  It’s kinda strange in a way because her weight still seems to be creeping up, which would make us all expect that she is holding on to some extra fluid, but she’s not acting like she is fluid over-loaded.    So we’ll just take it as it is, and praise God and continue to wait for a previously loved heart to come our way.

And Jason and the kids had a wonderful time away at the cottage with my parents and my brother John and his family.  I talked to them everyday and although I was missing them like crazy, I was so happy to hear that they were having an amazing time.

kidscottage1

sarahfish

kids

And they were originally planning on coming home on Thursday, but as I was leaving Ronald MacDonald House Thursday morning I happened to stop and talk with one of the staff, and she informed me that the Toronto Health Unit had decided to keep the house closed another 5 days due to the Chicken-pox scandal that I had written about earlier.   I was kinda annoyed to hear this news because it means that Jason and the kids would be coming back to still nothing going on at the house…  no summer program or craft room and no home for dinners, nothing.  So after I told Jason the news, my parents graciously offered to let them stay at the cottage until Saturday…. which was great for Jay and the kids, but I was kinda sad because I was already missing them so much and now I wouldn’t see them for a few more days.

But than Jason called me right back with this bright idea of me hopping on a bus to Parry Sound as soon as I could  so I could join them at the cottage for two nights and then come back with them on Saturday.   What a great idea!  The nurses encouraged me to go, and so I got my act in gear, and  at 2:30 pm I was on a bus headed North.  Now I always hate leaving Ava, but feeling torn comes with the territory of having a child in the hospital as well as healthy children.  And to be honest, I feel much better about leaving her when she was feeling better rather than leaving her when she isn’t doing well.

So Thursday night I was reunited with my family, and on Friday I got to enjoy a full day of beauty that is the lakes and trees and rocks of Northern Ontario.   I think God’s timing is perfect.  It was just wonderful to get away from the city and relax and refresh and gain some perspective again on our situation and know that God has a plan and is keeping us in His hands.   I love that He knew I just needed to rest and spend time with my family and my parents, and God arranged it perfectly.

And so today we came back to Toronto.   The girls and I went to see Ava this afternoon and she was again, very happy and full of smiles.  Isn’t God good?   We really attribute her turn-around to prayer, and God’s goodness.   Just two weeks ago I was sure that we were losing her, and now she is feeling better than she has felt in ages, and it’s astounding and amazing all at the same time.

We feel so blessed as a family and I’m so thankful for even just a tiny vacation.

Amen!

the Zoo

Today we went to the Toronto Zoo!     Through Sick Kids Child Life Program,  the Zoo graciously had us as their guests (free of charge) and we went and enjoyed a day with the kids and the animals.  It was good and we had a great time and it was nice to get away and spend some time as a family.

And we saw the Pandas!   Well, actually we saw one of the Pandas that are currently on loan to the Zoo from China.   The other one was sleeping inside and we didn’t want to line up to see him or her, I can’t remember which Panda this was… but it was pretty cute!

Panda

I think our favouite was the Polar bears though… it was cool seeing them swim underwater and eat their vegetables…

Polarbears

Now I’ll be honest, going to the zoo wasn’t exactly all roses and peaches and cream.  Jason and I have been realizing that our regular lives include more than the average amount of stress (really?) and so when we add extra stress (like taking four kids to a Zoo)  I feel like I don’t have much reserve to deal with stressful situations… like when we lost Will today.  Well technically Will lost us, he kept walking after we saw the penguins and thought we were behind him, except when he looked behind we weren’t there.    Thankfully the other kids and I stayed put and Jason went after him and found a rather upset Will fairly quickly, praise God, but I felt the panic rising up in me much quicker than it would have before.

So it was really nice that when we found ourselves all getting tired and cranky and hot,  we could go cool off at the splash pad.  The kids loved it and had a great time.

Will

Soph

Sarah

Erik

We were definitly blessed to be able to get away today and make some memories!!!

And then I had time before dinner to go to the hospital and see our own little elephant…. sweet little Ava on her CPAP…

Ava Cpap2

Ava Cpap

The camera flash startled her here…  sweet little miss.   It’s a little hard that Ava needs to be on CPAP so much, they have pretty much said she needs to be on it at all times, except for a few quick breaks here and there.    But thankfully for most of that time is she asleep, and when she is awake it doesn’t bother her too much and I can still hold her interact with her with it on.

When I did take the CPAP mask off her tonight, she was so smiley and happy…

Ava

But she just can’t be off it for long.     Tonight she only lasted about 30 minutes off before it was obvious that she was working too hard.   But last night in the short time she was off, I was able to feed her pears and she was drinking milk from her sippy cup!     We just have to enjoy the good times we do have with her now,  even though it is hard not to mourn the time that we are missing out on.    But we will take whatever good God gives.

So all in all,  it was a good day, making the most of the situation we are in.

Thanks again for your prayers and your encouragement… we appreciate it so much!

Thank you!

Once again, thank-you to everyone for your prayers and support right now.   And we also wanted to shout out a huge thanks to Jason’s sister Lija’s co-workers at the London Courthouse…   they had a fundraiser to help us out with staying at the Ronald MacDonald house and we were super blessed! !!!!  Thanks guys!!   We were really very honoured and the money will be a huge help, so thank-you.   There have also been others who have contributed financially to our journey along the way and we are so grateful.  It’s humbling to be at the receiving end but we accept it all graciously for Ava’s sake,  it’s all for our sweet baby.

And that sweet baby does seem to be a bit better.  It’s crazy that they still don’t have any things conclusively wrong with her – in terms of infection that is.   Clearly her biggest problem right now is her her terribly functioning heart, and so any infection, or even a cold or stress just escalates things to a point that almost tips Ava over the edge, as her Doctor’s so nicely put it.

Wednesday morning things seemed very dire and the outlook for Ava did not look good at all.   She had spiked a fever of 41 degrees and her heart-rate was over 200 beats per minute and there was no way her heart was going to be able to sustain that rate for very long.  They had to start Ava on CPAP to take some of the pressure off of her heart  (it’s a mask on her face that forces pressurized air into her lungs).   Unfortunately, but not surprisingly she HATES it so she has had to be sedated since yesterday morning so as not to upset her too much.  Yesterday they also put Ava on a cooling mat that seemed freezing to me, but thankfully she tolerated it and it brought her temp right down which helped bring down her heart-rate as well.  They also increased her heart med – milrinone – to the highest dose to help her heart but that is only supposed to be a temporary measure and they plan on weaning that back to the middle dose that she was on earlier this week.  She’s also on a low but constant infusion of morphine to help keep her calm and to keep any pain away.

But as of today her heart rate is back in the normal range and Tylenol seems to be keeping any fevers at bay.    She came off the CPAP for a few hours this afternoon, and then again tonight.         Tonight when she came off of CPAP, they had left the sedation wear off so I cuddled her and then when she had enough I put her in her chair, and she was actually bright and alert for about 15 minutes.   But she wouldn’t smile.   If Jason had been there she would have smiled as she always smiles for daddy, but she was being stingy with me.  🙂

ava

She’s kinda puffy still as she is retaining some fluid – always the fluid – and still really sleepy.  But at this point things are looking like she will be staying this side of the cliff that she seems to live way to close to the edge of… and I’m glad because each of these episodes seem to age me 10 year at a time.

In all of this we are so grateful to all the dr’s and nurses who have been so kind and caring.  One of our nurses who is also a believer painted the verse for Ava from my last post on a little plaque that now sits in her crib, and one of the residents who had seen that verse came by and shared she was also a Christ follower and prayed for Ava today which was so encouraging.   And both of our parents dropped everything to come down yesterday to be with us and that was so kind and the kids seem to be handling this OK as well.

And our biggest thanks is to God – our refuge and our fortress in times like these.  He alone gives us the strength day by day…

Psalm 91

1 He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
2 I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.”

Amen.

Some pink in her cheeks

I’m happy to say that the blood transfusion yesterday did Ava some good and there is some pink in our baby’s cheeks again!    And I just want to say a huge thank-you to all of you who donate blood.  It’s one of those things that you don’t think about until you need it, but then you realize just how important it is.

So now Ava is pinker, but she wasn’t much happier today.  She seemed uncomfortable, but she does have an IV in her foot right now.   Even though she has a picc line, the picc line is being used for her heart meds (milrinone) the picc only has one lumen (port) so had to get an IV for her blood transfusion yesterday.    Sometimes IV’s are fine and sometimes they just really seem to bother her, so hopefully this IV stays open as she needs it for a test tomorrow and then we can take it out.

And Ava is also off her oxygen!  She’s been slowly weaning herself off of it for the past couple of days and so we turned it off later this afternoon.  It’s nice to get the prongs off her face and having her breath room air again, praise God!  See how much better she looks… definitely not as white.

20130606_145045 (1)

And isn’t that dolly beside Ava a riot?   This afternoon our floor’s Child Life worker took Sarah and Sophia off for a play and they had these dolls that she gave to the girls and they got to decorate them and then they played hospital.  Well as I was told later, Sarah’s dolly had a breaking heart… and then the dolly had cancer and got a few needles.   Sophia informed me that her dolly didn’t have a heart, but that was OK because she didn’t need one. 🙂  Oh my girls, it’s so sweet but sad at what comes out in their play.  (The child life worker and I agreed that the cancer thing is probably something Sarah picked up from living here at the Ronald MacDonald House).

When I tucked Sarah into bed tonight she had her doll and she said that the doll was better now but still had to get a needle every day.  I asked her if the doll had diabetes,  but she said the doll doesn’t have diabetes, just something similar.   Oh my Sarah!!!

We also saw Grandma today as she drove in for a quick visit and Jason and I met with the transplant team’s social worker which was very informative, so the day went by really quickly which is always good.

So even though Ava isn’t quite back to her old self, I’m glad that she is looking better, and hopefully tomorrow will see even more improvement.

We’ll keep you posted!

Six months old!

Wow, Ava was 6 months old yesterday!   It’s hard to believe that we’ve had her for half a year already… it actually seems like longer, perhaps because it’s been so busy. 🙂

And she is still on the mend.  She had a few more  awake periods yesterday, which was nice to see.  And although they had talked again yesterday about giving her a blood transfusion to up her hemoglobin levels which were low, they held off because they still weren’t happy about her fluid balance as they felt she was puffy and retaining too much fluid.    So yesterday, they kept working on getting Ava to pee more, and gave her more drugs to help the diuretics, but when they looked at the numbers –  her calculated fluid in and fluid out – nothing seemed to be helping.

Then last night at 3:00 am,  Ava had a big wet diaper which was great news,  and her nurse went to weigh it, but the scale said the amount in the diaper was only about 80 mls.   The nurse thought  that was strange as it felt much heavier so decided to weigh the diaper on the scale next door and guess what…  the scale in Ava’s room was wrong!!!    The diaper was more like 140 mls, which obviously meant that they hadn’t been able to get accurate amounts of Ava’s outputs for who knows how long,  as the scale was under-weighing her diapers… grrrrr.    So the poor baby had been made to pee too much, and ended up being very dry, and when they weighed her today it showed that she had lost a lot of body weight (probably mostly fluid), so that wasn’t too good, but but thankfully today they are trying to correct everything by upping her fluid intake and she did get her blood transfusion which should help to perk her as well.

She still has her cough and she still has gunk in her nose, and still isn’t feeling the greatest.   But as the nurse said today, if you or I had what she had, we would be in bed and would have taken a week off of work.  So it stands to reason that this bug has been hard to beat for our little Birdy with her not-so-great half a heart, as well as the stress of Saturday when she didn’t eat all day and had the picc line insertion, it’s just a blessing that she’s lived to tell the tale!!

But we praise God that He is healing her and for the fact that He is still laying her on people’s hearts and prompting them to pray for her.  God is not finished with Ava – but I realized today that what I really need is a good dose of hope.   I know that God is a God of miracles, and He could heal Ava and bring her a new heart, but I also know that He gives and takes away, you know what I mean?  So it’s a very difficult place to be in –  and I know there are other families who are dealing with similar situations –  a place where you don’t  know how to think or how to feel.  Are we to look ahead with hope at bringing her home some day?   Or should we be preparing our hearts (I don’t think we ever could) to let her go?

At this point all I can say is that we are looking forward to getting all of Ava’s pre-transplant  testing done so Jason and I can have a heart-to-heart with the transplant Dr’s and see what they say.  Hopefully they will say that Ava is a good candidate for a transplant, and that she is in a position to hang on for a heart, however long that might take.   If they say something different, we will just have to cross that bridge when we come to it.

Regardless of what happens going forward, the six months that we have had with Ava have been a blessing and we count each day as a gift.   But please pray that God would be gracious to us give us some tiny glimpse as to what our future holds with Ava.  Our future with our sweet little 6 month old who needs a new heart.

Momava

Happy Birthday Sophia!

Sophia turns 4 today, Happy birthday Sophia!!!

Sophiabday

She’s growing up so fast, our little sweetie pie.    Our sweetie pie with an iron core.  She’s sweet but tough and it’s a good thing because it’s meant that she can transition between our house and Oma’s and the Ronald MacDonald house no problem.   She’s fine with whoever can take care of her,  as long as they love her and can stand her constant chatter… hahaha. 🙂

Last year when I expecting, she  had to transition from my ‘baby’ to my ‘little one’, but now I think that we have to transition again to just our little girl.   Oh Sophia, we love you!

And talking about transitioning, we’ve all settled in well here at the Ronald MacDonald House.  Although I was a little disappointed yesterday when I found out that Ava would be moving back into her own room at Sick Kids, and out of step-down where a nurse was always in the room with her.  She does’t need that level of care now that’s not on the IV heart meds, but it was really nice to know that she was never alone,and so I didn’t feel guilty when I came back to the RM house to spend time with the family.

Now I will start sleeping at the hospital again so Ava won’t be alone which is OK, it’s just another change.   And since Ava typically does sleep through the night, if she has had a good day and settles well,  I will come here and sleep at the RM house occasionally.

And it’s a good thing Jason and I weren’t asleep last night at 10:15 when the fire alarm went off here at the house.  Even though the alarm is VERY loud, we had to wake all the kids up and take them outside until we got the all clear (someone had probably just burnt popcorn) and so that was a bit of an adventure.

And miss Ava is doing well… but probably not 100% percent.   She is coughing more again and so today will get her third chest x-ray since we arrived on May 10th and will get yet another nasal swab to rule out any new infection.  I hope it’s not anything new; but if it’s not viral, that means the cough is probably related to her poor heart function and that is not good either.

Today we had our first introduction meeting with the transplant team, so as of tomorrow Ava will get some blood-work and tests to start the process of listing her.   This really seems surreal, and it also means a complete change of care, from the dr’s and nurse practioners that we’ve grown to know and trust, to a completely new team, but again thankfully we’ll just do this one step at a time and I’m sure this new team is just as wonderful.

Well I must go to spend the rest of the day with my family and our little birthday girl.

As always, I’ll keep you posted!

Feels weird

Ava is doing great today, which is good.  Yesterday I don’t think she was feeling that well, probably because of the after effects of the sedation and the tube they would have put down her throat during the cath.   So is nice to see that she is feeling better.

She might be feeling better, but I’m having a hard time adjusting now to Ava’s new accommodations at Sick Kids.   Because Ava is now on IV heart medication, Ava had to move from a private room she shared with me, to a “step-down” room with 3 other children that always has at least two nurses in it at all times.

This is a huge change for us, first off because I can no longer stay with her over-night and it’s just a different atmosphere… very busy and there seems to always be a baby crying, or a machine making noise or beeping, so it’s going to take some getting used too.

And last night just felt plain weird.  Here I am, a mom of five young children, without any children around!    I hope that Jason and the kids can come join me before I get used to it… haha.   Thankfully it feels too strange to feel good. 🙂

And I’ve had some pics of Ava that I tried to share last night but I don’t think they worked so I will try again.

Here is my little Birdy going for a walk in the hospital… this was before she got an IV pole, it’s not so easy now!

20130511_173012

And then a few pictures of her before her cath on Thursday…

20130516_123321

20130516_123830

Once again, Ava looks great, even though on the inside of her things are telling a different story.

Thanks so much for all your prayers and encouragement, we appreciate them so much!!!

Please come

Next Sunday – May 5th –  Lord willing – we are dedicating Ava at church and you are all invited!  I mean it!  Even if you don’t normally attend church, if you have been following our story,  you live in our area and are free next Sunday, we want you there to see Ava and share this time with us as we dedicate this little Birdy….

avadressed

When we dedicate a baby at our church it means that we are publicly acknowledging that our child is a gift from God, and we ask for help in our endeavour to raise that child according to God’s word – the Bible.    And because we have so much to be thankful for regarding Ava, Jason and I have been given an opportunity to say a few words about our journey and I know I’m going to cry buckets, and I would mean so much if you could join us.

Please see this link – Harvest Bible Chapel – for service times and information – and you can always email me at 6andahalfhearts@gmail.com for more information.  And you can definitely bring your kids as there are programs running for them during both services up to grade 5.  We will be sharing our story at both services on Sunday so you can choose either one.

We are so grateful to God for His goodness and since Ava doesn’t normally go to church because of risk of infection, it will be so nice to have everyone together.       If something unexpected comes up – like another hospitalization – we will have to change the date, but we will post any information regarding that here on our blog.

So don’t be shy, please please come, we want you there.

Moving on up!

It was a big day yesterday,  Ava moved out of the Cardiac critical care unit and up to the fourth floor!  It feels so good as it’s a step in the right direction for Ava, going to the 4th floor means we are one step closer to going home.   Here she is, all bundled up like a pea in a pod, ready for her big move….

20130102_124329

The fourth floor is the cardiac floor, and so it’s all kids recovering from heart issues, or kids who are waiting for heart transplants.  It’s definitely more relaxed than the CCU and it’s so nice that we don’t have to call to the front desk and get permission to visit Ava like we had to do when she was in the CCU, now we can just waltz in and visit her anytime.

So in her new digs, there are four children and 2 nurses, it’s called a ‘step-down’ room.  And these nurses are still busy, but it’s a different busy than the CCU, it’s more feeding and changing diapers and monitoring vital signs busy as these kids are mostly awake and need attention like all kids too, so here it seems that they really appreciate when a parent is around and can help with their child.

And Ava is doing so well.  She still has her times where she breathes’ really fast, but her heart rate is good and for the most part her oxygen saturation levels are pretty good. They are still monitoring them and for her a good sat is around 80, but sometimes she is dropping into the 60’s or over-circulating and going into the high 90’s.    This is might be normal for her, but it would be better for her to stay around 80, so we’ll see what they say around that.  Last night when I was holding her she was dropping down, but when I put her back in her bed, she had a little cough and her sats went back up, silly monkey!   But it was nice that she didn’t have to go on oxygen, which is what they do for her when her sats get too low.

So today we will hopefully find out what her goals are,  and what we need to accomplish before we can take Ava home.  I’m starting to get excited about that, so please keep praying that we would keep moving forward.

We also have some more diabetes training for Sarah today – Sarah our five-year old who now checks her own blood sugar!  I’m not kidding!  She pokes her finger and knows how to use her monitor.  She is just something else.

The plan today was to also attend an information session to see about putting the kids in the school here at the Ronald MacDonald House next week, but both Erik and Sarah have sore throats this morning.  I hope it’s just because it’s insanely dry here, and not because they are getting sick.    God has been so good to us so far with our heath, and so I hope that we can avoid bad colds or even strep-throat as this could even jeopardize Ava,  so please pray for this as well.

Well it’s another day here and I gotta get going.   We had a fabulous visit by some of our friends and neighbors yesterday. Such a boost for our morale!   And it just makes me want to go home and see everyone again…  Lord willing it will be soon.  But for now, just grateful that Ava is moving up in the world!