My theory

These past few days have been crazy again!   And it was good to be home for a bit, but I won’t lie, being home is also stressful.  Stressful in the way that when I’m there I just want to stay, but then I’m torn because I miss Ava.    And Erik was started to say how he just wanted to stay home and was starting to say it a lot, and so yesterday Jason and I decided since home is just not our reality right now, it would be just best to head back to Toronto.    We did leave rather late last night, but usually when you leave late at night there isn’t any traffic so it works in your favour.  But not last night!  We hit construction around 11:30 pm on the 401, so had to take a detour, just to hit downtown Toronto at 12:30 am.   And it seriously could have been 12:30 pm, it was that busy.  We weren’t sure if a show or a game had just gotten out before we arrived, but there were people and cars everywhere which definitely slowed us down.  We finally got back to the Ronald MacDonald House around 1:00 am… fun.

This morning I was so tired I called the hospital at 8:00 am to say that I would be shortly and to check on Ava, and was reassured that Ava was fine.   But then around 9:30 am I received a phone call from Ava’s nurse to say that Ava’s heart rate was up, and with that her temp was coming up and she spiked a fever of 39 degrees and I should come in.   Oh Ava.

And to make matters worse, when I got to the hospital,  I found that they decided that Ava needed to be watched more, so they moved her out of her private room and into a true “step-down” room where there are 4 children and two nurses who never leave the room.    This was upsetting because if we aren’t in our own room our kids can’t come and visit Ava, and if Ava can’t wait for a heart, this might be all the time we have with her, and it would be very hard if we couldn’t all be together.

I called Jason and asked him and the kids to pray for Ava, and to pray that we would get moved back to our own room…  and not 10 minutes later we got the news that they did decide that it would be best for us to be back in our room, praise God!    We were going to have to wait since they had moved someone else into there,  but they would be out later in the day and then we could move back.    It was so cool that God answered the kids prayers and they were pretty pumped about it.  William thought it would be cool if everything he prayed for got a ‘yes’ answer so quickly…  which made me really glad that God has a sovereign will. 🙂

So the end the day saw Ava back in her own room.  The poor girl slept most of the day today, she clearly wasn’t feeling that good, and because of the fever they took more blood cultures from her… this probably makes 100 blood tests in the past weeks.  They just can’t find any infection.   We did have that one positive culture the other day, but it may have been a one-off because nothing else has ever been found.   She seems to be showing signs of infection, but I’m starting to have my own theory.  I’m wondering if Ava is in some kind of pain, which causes her heart-rate to go up, and because of her heart-failure, the increased heart rate actually causes her temperature to rise.  This would be opposite to the premise that usually applies, that an increased heart-rate is caused by a fever.

Who knows, I’m certainly no doctor, but when I called tonight at 9:00 pm to see how Ava was, her heart rate was back up into the 170’s, so I asked the nurse to give her some morphine.  I called an hour later and her heart rate was back down to 140.  So maybe Ava is in pain.    I would like to try to keep her pain free for a day or two to see if we can keep her heart rate down, and just maybe, that will keep the fevers at bay.

If I’m wrong, I would just pray that some source of infection would be found in our poor little Birdy.  She’s been poked so many times that she’s not going to have any blood left and like I said before they just can’t find any infection that would explain her fevers.

But whatever happens, I’m so grateful that our family is back together, and so thankfully that God answers prayers!

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We Believe

So this morning Ava got her picc line re-wired and now has a double lumen picc!   We are all quite pleased.    And I realized today that Ava is pretty smart.   This morning a member of the transport team came to get Ava to bring her to IGT – Image Guided Therapy – and Ava was not pleased about being taking somewhere.  She was upset, but it wasn’t just that, she was just acting in a way that made me sure that she knew that we were taking her somewhere and that uncomfortable things happen to her when we do that. 🙂    She didn’t want to calm down when we got there and because she just need a local anaesthetic for the picc swap,  we gave her some oral morphine just to make her comfortable and calm for the procedure, and it worked.  She soon became quite calm and sleepy.   They wheeled her away and I had to go wait in the waiting room, but our nurse that stayed with Ava said that she would open her eyes and give the doctors the stink eye once in a while during the procedure,  just to let them know she was on to them.  🙂

And then on the way back up to her room she was fine.  She was looking all around and I really do think that she knew that it was over and she was going back to her room, call me crazy but I know Ava and I think she knew what was going on.

And they said the procedure went smoothly.  Ok, so I was in the waiting room, waiting for Ava to be done when the Dr came in and asked me to come with him.  I got up and followed him and he shows me into an office and says “We can talk in here”….  and for a split second my heart stopped beating and I held my breath because in that moment I thought it might be bad news.   But before he could close the door behind us he said, “She’s fine!”  Oh phew!!!    I think he must have seen the look on my face,  so he explained that they don’t like to say anything in front of other parents, even good news.   I was just happy to hear that all went well.

So other than that it was an OK day.  The morphine made Ava sleepy so she slept till about 4:00 pm when we woke her up to weigh her.   She was alert so I fed her a little bit of pears and she had a few sips of milk.  I was laughing at her – in a good way of course – but she was quite fluid over-loaded today and looked rather puffy and cute – her eyes were just  little slits and her face was quite round, oh Ava.    They had held one of her diuretics yesterday as it was making her mineral levels wonky,  but thankfully with the double picc now, they can consider giving her lasix constantly, which will probably be a good thing and hopefully she can drop the extra fluid soon.

So all in all it was a good day.   And really,  the bigger hope here is that the old picc was perhaps harbouring infection that we could never really see – and with that gone maybe Ava won’t get any more fevers and then with the constant supply of lasix, she can become more stable and plateau in a good place while she continues to wait for a heart.

And I have to say that God is changing my heart in this wait.  For a while I was just thinking that God was going to take her, as a transplant just seemed so impossible.   But lately,  I really find my faith growing and as I told my dad the other day, I am started to believe, really truly that God can heal Ava and will bring her a heart.   It goes against my human reasoning,  and I still feel the need  to prepare for if she goes… but it’s just something that I can’t explain.    I started reading Beth Moore’s book ‘Believing God” and she wrote something simple and profound that really spoke to me…

‘The God we serve is able (Dan 3:17).  Everything is possible (Mark 9:23).  Nothing is impossible (Luke 1:37).  We can always hope and pray diligently for a miracle.  If, in God’s sovereignty, He chooses to accomplish His purposes another way, let it not be that we have not because we asked not (James 4:2) or that we have not because we believed not (Matt. 9:29). 

This is exactly what our Pastor Leo told us before Ava was born.  It’s OK to pray for a miracle…  we can because God can!  I just needed reminding.

So we are begging God to intervene with a miracle – a new heart – that would save Ava’s life and I know He can!   He can!

But if He chooses not too, it won’t be because we didn’t ask, or because we didn’t believe.

We believe.

Amen.

Another bump in the road

Well three days ago I took that video of Ava and she was quite happy – and then yesterday the little monkey went downhill again.   When I went to see her yesterday morning her heart rate and respiratory rate were up and her oxygen saturation levels were down.  They were worried she was getting sick, and then when they went to access her picc line for blood work – the picc was sluggish and they couldn’t draw blood back in the line.   That made me and the Cardiology Fellow  wonder if perhaps Ava hadn’t properly been getting  all of her heart medication that she gets through her picc.   She is so dependant on her milrinone that if she didn’t get enough of it over-night,  she would definitely be showing worse signs of heart failure, even if she was or wasn’t getting an infection.

But irregardless, her temp was also up, so they had to do blood work once again to see if they could find pinpoint any source of infection.   Later in the day it came up that there were some markers for infection in her blood – her white blood cell count was up and her nutrafils were up as well – but we have to wait 48 hours for blood culture results to come back.    Just to cover all her bases, the Dr put Ava on two strong anti-biotics in case there was something, because we all know that Ava has no resources to fight an infection on her own.  Towards the end of the day last night she also started de-satting again so we had to add oxygen to her CPAP, something we’ve never had to do before, so that wasn’t a good sign, but she was sleeping quite comfortably so I felt Ok to leave her for the night.

Then early this morning I got a call from Ava’s Doctor telling me that Ava didn” look great and that I should come to the hospital.   And when I got there, Ava did look quite ill, but at least opened her eyes for me and they were relieved because she had seemed so out of it before.   But she just didn’t look like herself, and the fact that she was also fluid over-loaded didn’t help.   But as the day went on she did get a bit better.  The nurses gave her some medication to help her sleep and some morphine so she would be comfortable and she slept most of the day.   Towards the end of today I actually got a smile out of her which was wonderful.   And we were able to turn down her oxygen a bit and so praise God she does seem to be on the mend, but I guess with Ava you never can really tell.

Oh my Ava!  These episodes of hers are certainly stressful and seem to take years off of my life.  But even though I cry and wonder each time if I’m losing my baby,  I also feel an over-whelming sence of peace, that no matter what happens either way, it will be OK – God will give Jason and I His grace and strength to get through it.

But where there is life there is hope!    And even though we are experiencing another bump in the road,  Ava’s journey is not over yet, God may still bring this baby a new heart!!

A Verse and a Video

Ava had an OK day today, I think her teeth were bugging her and that made her a little cranky, and that tired her out so she slept most of the day.   But just before dinner she woke up and was happy and smiling for me.  And then tonight Jason and Will went up to see her and got more smiles again.    We are so grateful that even though CPAP is her life now, she can still give and receive love and bring us joy.

I just wanted to share a verse that I’ve been clinging to lately that another cardiac mom emailed me….

John 9:1-3 (ESV)

Jesus Heals a Man Born Blind

 As he passed by, he saw a man blind from birth.
 And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

It reminds me again that God has a purpose for Ava and He planned for her to be exactly how she is.  I pray that her story would be one that does glorify God and we truly pray that the works of God may be displayed in her…  and wouldn’t it be amazing the work He displayed was bringing her a new heart?   Oh God, please bring Ava a new heart!

And just in case you have a minute, I took a little video clip of Ava last night.  It’s nothing super or fantastic,  it was just Ava happy and playing with me talking to her.  She looks pretty good, but because she’s not on CPAP she is working harder to breathe and she was only able to play for a few minute before she was all tired out.

Oh – and I guess I’m so used to Ava I don’t see all her extra hardware… but I wanted to assure you that nothing on her, the chest leads or the ng tube going in her nose, or the picc line in her arm hurt her,  now they just feel like part of her and she is very used to them. 🙂

Enjoy!

Encouraged

Well this morning started out well as I was happy to be back at the hospital with Ava and she was happy to see me and we had a really nice snuggle…

But then rounds came by.  And the doctors told me that in their view Ava is getting worse and they are pretty sure her terrible heart function is causing all of her problems.   And because of this they wanted to make sure that I talked again to the PACT team (palliative team) about making sure we had a Care Plan in place for Ava that would make sure that she was always comfortable and never in pain as she struggles to wait for a heart.

Now,  the funny thing is, I actually talk with the PACT team daily as they come and see how we are doing, so we are all good friends by now.    They know us and how we feel about Ava and her wait for a heart,  and they know we have never allowed Ava to be in pain or uncomfortable.   But they said that sometimes the Dr’s – in our case Cardiologists –  feel that something has to change in a situation like ours when a patient is deteriorating rapidly, when really nothing medically changes, we just continue on like we have been.   But to make everyone happy, the PACT team said they were going to write a little note for Ava’s binder saying that Jason and I are good advocates for Ava’s care and to administer morphine or a sedative whenever Ava requires it or we ask for it.

So I should be discouraged, except I’m not, I’m actually encouraged.   See, I know that God is the one who has a plan for Ava and He isn’t finished with her yet.   The woman who cleans our room everyday at the hospital is a believer and she has this incredible faith and reminds me daily not to give up hope, that God has a plan for Ava and she tells me all the time that God is going to heal Ava and bring her a heart.  Even though I sometimes think her faith is a bit extravagant :), I know her daily encouragement is a gift from God.

And the truth is we don’t know exactly in what way God is going to heal Ava.  Is He going to provide a new heart for her on earth?  Or take her home and give her a new heart there?   All I know is that I can fully trust Him, even with the difficult knowledge that His plan might be to take our baby away from us, which would be so painful.     But I just had the opportunity to pray for another mom who is waiting for a heart for her daughter, and being in a position that God can use me to pray for others encourages me again still.  Plus there is this verse…

Now to him who is able to do far more abundantly than all that we ask or think,
according to the power at work within us,
to him be glory in the church and in Christ Jesus throughout all generations,
forever and ever. Amen.
Ephesians 3:20-21 ESV

God can do more in this situation with Ava than I could ever imagine or think.  Praise God, how wonderful that He can encourage my heart even on a day like this.  He is good!

A Little Stress Relief

We got the best kind of stress relief this weekend, we went home!    After my “episode’ on Friday, or as my dear darling husband likes to call it, my cry for help (oh haha,  he’s so funny) I was more than ready to go home and look at something other than an inside of a hospital.    It was hard to leave Ava, but I knew that we were leaving her in the care of great nurses, and I also knew that if I didn’t  get a break soon I wouldn’t be any good to anyone.

So we left Saturday morning after I went in to say good morning to Ava, and we got home in two hours which is amazing timing.    And it was great to sleep in our own beds and spend some time with friends and family.   Even though when we drove in the driveway it looked like our house hadn’t been lived in for years… a week of rain and warm weather and every bush and shrub on our property decided to grow like they hadn’t grown before and things looked rather neglected.  But it gave Jason something to do and thanks to his hard work, things look much better now.

It was good being home, but weird and sad in a way too.  First off, there were reminders everywhere of Ava and I found it tough going to sleep the first night with her play-pen still up beside our bed.    Jason actually suggested the next day we should take it down and I did and that was a good thing.   Especially because if Ava does get a heart we will need it here at the Ronald MacDonald House, and if she doesn’t get a heart and doesn’t come home,  well…. I actually put quite a few things of hers away this weekend for that very reason.

Erik, Will and Sarah had a wonderful time with Oma and Opa this past week and to be honest, I’m not sure they wanted to come back to us.   But my parents brought them home yesterday afternoon and it was great to be together as a family again.  And for a little while it did feel like we were a normal family just enjoying our daily normal life.   But then we had to pack up and head back to Toronto and I’m so grateful we made it here tonight just before the rain started and the flooding began… God’s timing is perfect!

I did brave the wild, wet, weather and walked over to see Ava at Sick Kids after we unpacked.   I don’t usually like to walk in a thunderstorm, but you know you are a cardiac mom when you pray that you don’t get struck by lightning… but if you do get hit, you hope they can at least donate your heart. 🙂  I guess that’s horribly sad.   But when you are waiting for a heart you start to think in weird and wonderful ways.   Actually, the rain was so bad, that when I walked in to the hospital,  they were asking people on the loud-speaker to move their cars as the underground parking was flooding… that was surprising.  But apparently Toronto got 74 mm of rain tonight,  which is just a little less than their usually monthly average, so as you can imagine it’s pretty wet here.

And then Ava.   She is doing OK,  but we are a little concerned for her as they told me that she started sweating  all over today.   And it’s not just a little bit of clammy forehead like she is apt to get, it’s all over soaking sweat.  So Ava’s doctor was concerned and started her on antibiotics in case she is getting sick and they are keeping a close eye on her like always.  When I was there with her tonight, she wasn’t crying, but not really happy either and her sweating was a bit disconcerting.   She still prefers to be on her CPAP than off, and I also thought that she looked puffy tonight, so we will see what tomorrow brings.

This is not an easy life and although I long for ‘normal’ in some ways,  I would rather go through what we are going through and still have Ava with us.    And I’m so grateful for a few days to recharge our batteries, a chance to go to our own Harvest church and worship with our family there,  and experience even just a little stress relief.     Thank you Lord, we are very grateful.

I hope He will…

Ava is seven months old today – where is the time going?     And she was  feeling a bit better which was nice to see.    She got a blood transfusion yesterday so that helped her hemoglobin levels and that meant her colour was better and she had a bit more energy.    But she was still a bit congested with extra fluid, and that made her tired quickly, but thankfully she was able to come off of her CPAP for over 4 hours today so that was a huge improvement over the last few days.   She is still battling low-grade fevers that go hand-in-hand with higher heart rates,  but at this point the Dr’s are starting to think that they are heart- function related.   So we all just keep a close eye on her and give her Tylenol to help bring her temp down, and make sure she gets lots of rest with her CPAP which keeps her heart rate down.

And we got a little chair for Ava to eat in today!     The occupational therapist and I have been attempting to give Ava solids for a while now and today she was really enjoying her puree pears and took 15 mls of milk from a sippy cup!   Which may not seem like much, but for Ava is a huge feat and I was very very proud of her… sweet little miss.

But the big news today in Ward 4D was that a heart finally came in!!!   There hasn’t been a heart come in since April,   and with so many kids waiting for transplants it was getting discouraging for everyone.    So all the dr’s and nurses were pretty pumped today.   Now it obviously wasn’t a heart for Ava, or even Aleeda which is too bad… it went to another baby who is 3 weeks younger than Ava.   And that gave me the opportunity to discover that no matter how happy you are for that other family, it’s also a very emotional thing to realize that their child now has a chance at life when your child might not.    In this case however, the transplant nurse today was very open in saying that because the heart was coming from far away it needed a recipient that could receive it quickly.    And the little baby that got it had never had surgery before and he was going to be straightforward, whereas both Aleeda and  Ava have had surgery before and the operation would have taken way long on either of them (that’s assuming it would have worked for either of them) and the heart wouldn’t last that long.

So the way I look at it, is that the little baby boy who received a heart today, received the heart that was meant just for him.   That means I don’t have to be jealous or upset, and praise God I’m truly not.    But it does make me happy to realize that hearts actually do come in…. it’s pretty exciting.    And everyone says that hearts come in waves, and if that were true than more are on their way and who knows… maybe Ava and our friend Aleeda will get their hearts soon!     How wonderful would that be?    I know that I have renewed my prayers for a heart for Ava, I know God can provide one… so I hope He will!

Congestive Heart Failure

Well thankfully this morning Ava is feeling much better.  They finally managed to get some fluid off of her and so her fluid balance is less positive and her liver is back down to a normal size.   Basically Ava is struggling with heart failure and all that it entails.   I actually looked up heart failure so I could understand better what was going on with Ava, and now you can too because I”m going to share it with you. 🙂

So… congestive heart failure as defined by the nice people at MedicineNet….

Congestive heart failure (CHF) is a condition in which the heart’s function as a pump is inadequate to deliver oxygen rich blood to the body.

So there you have it.   Ava’s little heart is doing such a terrible job, that she’s not able to properly profuse oxygen to her entire body and this causes alot of problems.  Here are some of the problems as explained by them…

  • The weakened heart muscles may not be able to supply enough blood to the kidneys, which then begin to lose their normal ability to excrete salt (sodium) and water. This diminished kidney function can cause the body to retain more fluid.
  • The lungs may become congested with fluid (pulmonary edema) and the person’s ability to exercise is decreased.
  • Fluid may likewise accumulate in the liver, thereby impairing its ability to rid the body of toxins and produce essential proteins.
  • The intestines may become less efficient in absorbing nutrients and medicines.
  • Fluid also may accumulate in the extremities, resulting in edema (swelling) of the ankles and feet.

So you can see that trying to keep Ava healthy and happy until she can replace her terribly functioning heart with a new one is a lot of work and a very fine balance.    Yesterday, she was so fluid over-loaded that she just couldn’t breathe without her CPAP on, so  she was only off an hour or two in the whole 24 hours period.     And then not being able to breathe makes her so tired.    Even now she can’t do much more than have a quick cuddle and give out  about a dozen smiles before she is just pooched and she needs to go back to bed.   She hasn’t gained weight in ages, she is still hovering right under 6 kilos… so right around 13 lbs.  She’s probably the same weight she was when we arrived almost 2 months ago in May… poor baby.    So she is just a wreck.   And it’s hard because we know there is no way she can get better without a new heart and since heart’s are hard to come by,  we just wait and by God’s grace we are getting through this as best we can.

Thankfully for our family, my mom and dad took 3 of the kids home with them this week so that they can run wild and free like little children should and not be cooped up here in the big city.  We kept Sarah with us because of her diabetes, but she is thrilled to be like an only child for a few days.   It’s just good for everyone, because I can spend more time with Ava at the hospital without feeling guilty that I’m neglecting the kids here and Jason can have a break from being the primary care giver to four very active healthy children.

Through this we can say that God is good.  We  are so grateful that never once He has asked us to do this on our own and He is always reminded us that He cares for us and Ava!!   It sometimes seems like too heavy of a burden for us to bear… but I was reminded again of one of my favourite passages of scripture that I’ve shared before…

Isaiah 41: 27-31

Why do you say, O Jacob,
and speak, O Israel,
“My way is hidden from the Lord,
and my right is disregarded by my God”?
28 Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
29 He gives power to the faint,
and to him who has no might he increases strength.
30 Even youths shall faint and be weary,
and young men shall fall exhausted;
31 but they who wait for the Lord shall renew their strength;
    they shall mount up with wings like eagles;
they shall run and not be weary;
    they shall walk and not faint.

Amen.

July 1st

It’s July the 1st and so I will say Happy Canada Day!    We live in a great country, and as you can imagine I am very grateful for our Country today… a country where we get amazing health-care without every having to worry about paying for it out-of-pocket.   And Sick Kids is a pretty amazing place and I’m proud that it’s Canadian too.  🙂

And today Sick Kids put on a Canada Day carnival for the kids, with some food and games and prizes and the kids quite enjoyed it.   I was glad the kids and Jason could come to me, because I spent the entire day at the hospital with Ava.   When I got there this morning Ava seemed really tired after having a quick cuddle with me, even though she had just been awake for an hour.  So we tried to put her down again with her CPAP on, but she just didn’t want to settle – and her heart rate kept rising.   And then of course, as always, just when you think you have your baby settled… the woman from the phlebotomy (blood-work) team shows up to take some blood from your almost sleeping baby who doesn’t feel well.   You can imagine how I felt.  So I felt that, plus I knew that getting poked in her arm would send her heart-rate through the roof and it was already high and that worried me.  But since Ava had already been given Tylenol and Advil and the blood-work had to get done, she got poked and her heart-rate did go up, but we gave her some morphine on top of everything and were able to get her settled, thankfully.

Except then we realized then that she felt very warm, and when we took her temp we saw that she had spiked a fever of 39 degrees.  Poor baby.  So we put some ice on her head and got her undressed and she finally fell asleep.       She has been having fevers again the past few days, so they have started her back up on antibiotics in case of infection.   And her blood-work shows that her white blood cell count is a bit high, so it would seem that she is fighting something, again.  Just like a week and a half ago when she had to go down to critical care.  I wish I knew what on earth was going on with her.   But I think part of the problem is that because Ava’s heart is so bad, even the smallest infection is going to wreak havoc on her.   And that makes us all worried because Ava is not really in a position to fight anything off right now.  She could really use a week or two of being well to help get some reserve back.    I am pretty thankful for her CPAP though, because once she does fall asleep on it, her heart-rate and respiratory rate goes down significantly and I know it helps her and makes her feel better.   I won’t be happy if she needs to be on it more than she can be off of it.  But I guess we will just wait and see.

She did have some smiles for daddy and the kids when she woke up from her 7 hour nap later this afternoon, so it was so nice to see her happy.  But again, it didn’t last long, and she quicly became tired and her temp started going up again and so we quickly bundled her off to bed.  So we will see what tomorrow brings for our sweet Birdy.

So here is to a new month that hopefully will bring a new heart for Ava and our friends who are also waiting for hearts… Aleeda our little friend here with us in Toronto, and a friend that we’ve been praying for in the US – Sofia – who also has hypo-plastic left heart and Turner’s Syndrome just like Ava.    We all can tell you that waiting for a new heart while watching your child’s health deteriorate is not an easy journey to be on, but we all believe that by God’s grace we will get through this, one day at a time!!!

Still asking!

We had a good day today – and that was good because Jason left to go home for a few days last night and his mom came up in his place which I’m so grateful for.  It’s nice to have help and there really are alot of children here to care for!    I’m always feel a little bit torn and wish I could be in two places at once – here and the hospital –  or maybe just have all of our family under the same roof again, which is such a novel idea I know.    I usually stay here at the Ronald MacDonald House at night now as Ava sleeps well and typically doesn’t give anyone much trouble at the hospital over-night, but I do miss not being with her.    I just called over to the hospital to see how she was doing,  and the nurses that are caring for her tonight are cuddling her and playing with her and getting lots of smiles, so at least if she’s happy, then I can relax.

It’s so wonderful when the hospital staff care for Ava when I’m not there.   It was cute this afternoon because when we all went to see Ava after lunch – Mudite and the kids and I –  we walked in Ava’s room to find the music therapist there along with the PACT team and they were giving Ava an impromptu concert.   We joined in and regaled her with such hits as “Puff the magic dragon” and “Twinkle-twinkle little star” and Ava just looked at all of us like we were crazy.   And then when we got to the part in the song where the babies go “Wahhh, wahhh,wahhh” in “Wheels on the Bus”, Ava joined right in and started crying, but calmed down when the mommies on the bus went “shhhhh, shhhh, shhhh”.  Oh it’s just hospital living at it’s best.

One thing about Ava is that it’s become clear that Ava is very dependant on her CPAP now.  I though we wouldn’t bother to put in on for her morning nap, but then we didn’t put it on for her before lunch-time nap either, but when she finally did wake up, she still seemed tired and not at all rested.   Not only that but her heart-rate was starting to climb higher this afternoon and her temp was starting to creep up again, so it would seem that she needs the boost CPAP gives her, as it helps her sleep better and takes the pressure off of her heart.  So  now it’s going to be mandatory for all naps, says me.   And I think the Dr’s would agree.

So not much else new to report, other than we are surviving summer in the city. It seems so wrong to move your family to down-town Toronto for the summer, but we are doing fine so far and since today was the kids last day of school, we can make some plans that will allow the kids and Jason (and maybe even myself) to escape the city for a few weeks this summer.

Once again, we are so thankful for everyone’s prayers and support.   Ava is definitely not getting worse and every day she smiles more and we are still praying and asking God for that new heart!