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!

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!

Small, frail and weak

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

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

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

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

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

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

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

Isaiah 40:11

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

AMEN

Waiting

This morning when I walked in the room to see Ava it seemed that a cloud had lifted… her fever is gone, her heart-rate is back in the normal range and her oxygen saturation looked great… so wonderful.   As of yesterday Ava actually seems to actually want the CPAP when she was tired, crazy baby.   The doctor on rounds this morning said these little ones figure out pretty quick that they feel much better on it and so get used to it, or even want it pretty quickly.

But still, no smiles for mommy.   I have been careful the past week to distance myself from all the negative things they do to her, like suction her, or do pokes for blood-work.  But I’m afraid that my sweet little Birdy still associates me with ouchy things since I’m always around.  But hopefully as I make sure to not be around when they happen, and then just swoop in and comfort her when they are done, maybe she will learn to trust me again.

And so in terms of what lies ahead for her, we just continue to wait.   And waiting is very hard, and very stressful.  Especially through these ups and downs and she’s experiencing. Things that frankly are surprising the doctor’s and nurses that she is surviving through.  We definitely  know that God’s hand must be upon her for her to still be with us.

So like this verse below says, we will keep waiting and trusting the Lord to keep us strong.

Psalm 31:24

24   Be strong, and let your heart take courage,
  all you who wait for the Lord!

P.S.  This next verse was the verse of the day today on Bible Gateway… loved it…

Psalm 121:7-8

7  The Lord will keep you from all evil;
 he will keep your life.
8  The Lord will keep
your going out and your coming in
 from this time forth and forevermore.

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.

Happy New Year!

Welcome 2013!  And may you be the year that has no crazy surprises… I think we had enough of those last year, thank-you very much.  And although I know you still might not be an easy year, we are learning to take life one day at a time, or even hours or minutes at a time and we know that by God’s grace alone we will get through anything that you bring to us this year.

But we’ve had a great start so far!   Ava went off CPAP yesterday morning at 7:00 am and hasn’t been on since and her breathing is good, but fast, but I think that’s normal for her.  The nurses have a word for it, ‘tachypneic’ which took me a while to figure out, but now I know it, along with a million other medical terms that last year at this time I would never have dreamed I would know.   🙂

And since she is no longer on CPAP,  she is ready to move up to the fourth floor at Sick Kids!    They are pretty sure they will move her tomorrow, so today was her last full day in the CCU, and it was a good day.  I helped give her a bath this morning, dressed her in the sleeper Grandma gave her for Christmas and had a nice long cuddle with her and enjoyed our last full day of one-on-one care which is wonderful but which we just don’t need any more

Then this afternoon her other chest drain tube came out and boy,  it makes it so much easier to hold her when she doesn’t have so many things attached to her!   And she’s still doing great on the breast-milk and I even like to think that her little cheeks have filled out a little more in the past few days she’s been on it.

So yes,  a good start to 2013.    And I wish all of you a wonderful New Year as well.  We are so thankful for all your love and support.    Your encouragement to us is worth far more than you know!

Happy New Year!