Happy Birthday Erik!

Our Erik turned 10 yesterday, I can’t believe our first baby turned double digits and is getting so tall.   But since I can’t find the cord for my camera, I have no good birthday pic to show you right now… too bad.  But I’ll just say instead that we are so proud of Erik,  he is over-all just a great kid and smarter than Jason and I put together. 🙂

And he had an OK birthday.   He was a little down last night because even though it was his birthday, he didn’t ‘feel’ like it was, and he wanted to go home.  Poor kid.   I probably should have done a better job of making it special.  But thankfully our friends the Seabrooks drove up to see us last night and we had a wonderful birthday dinner and she brought cake and the kids stayed up late and we had a great time.  But it’s still not the same as being home and I get that.  It’s just that this is where God has us right now and we gotta learn to be content.

Thankfully our little miss Ava is doing well.  She has had a good couple of days and has been very smiley and happy.   She is till having issues with her temp & heart rate rising, which might all be related to her terrible heart function.  But there are a few other kids in her in the hall-way that are doing the same thing, so maybe they just have a strange bug.    But it’s not a bug they can find,  that’s for sure!   They are running the whole gamut of tests again today on Ava to try to pinpoint some type of infection, but last time everything they did this everything turned up negative so I would be surprised if they found something now.

But other than that she is very good and we are happy to be able to give a good report.

We hope everyone has a safe and happy Canada Day weekend!

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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

Birdy on a wire…

Last night Jason and I watched Nik Wallenda walk a tightrope over river gorge near the Grand Canyon on TV.    Talk about nerve-racking!    To be honest I was only half watching and part  way through when I wasn’t concentrating Jason yelled “He’s falling” and I whipped my head around to see the TV so fast I’m surprised I don’t have whip-lash.

Well thankfully he didn’t fall, Jason was just having some fun at my expense, but I found the whole thing way to tense.    And I think that’s mainly because I feel like Ava’s the one walking the tightrope right now…  complete with scary episodes where she almost loses her balance and falls off the wire.   Thankfully by the grace of God she didn’t die this past week and has steadied herself, but  it doesn’t mean the journey ahead is less precarious or that I’m not worried that she might fall off again.   What a crazy journey to be living.

But she was transferred back up to 4D today – the hospital’s Cardiac ward.   It really felt like coming home and everyone was happy to see us back.   And Ava must have been glad too because after a nap she finally smiled at me!!    Me, her mom, she smiled at me…. something she hasn’t done for days.   It was wonderful to see her happy and content and I know that she’s pleased to be out of the critical care ward.

And so  it was a good day today that followed a great day yesterday that I had with Jason and the kids.   Ava was so sleepy yesterday that we took advantage of her one-on-one nursing care in the CCU and took a bit of a break from the hospital.  We went as a family to church and joined our Harvest Oakville family for worship in the morning.   And wouldn’t you know it, but the sermon yesterday was “when Faith needs a boost” and it certainly boosted our faith… we were reminded to look up to Jesus,  as the alternative is looking inward and self-pity is definitely a faith buster. 🙂   We were also reminded that just because we don’t see God working doesn’t mean He isn’t working, and that the greatest work God is doing is the work that we can’t see.  Cool huh?

Jason and I left very encouraged in our faith and we were so thankful that God had led us to church that morning.

We also sang a song during worship by Matt Redman…  ‘Never once’.    It really resonated with us.  Love these lyrics;

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone 
Never once did You leave us on our own
You are faithful, God, You are faithful

Words that Jason and I can echo for sure.      So even though our little Birdy is on a wire, we know that God has her in His hands and we just have to keep looking up to Him and trusting Him completely.  Even when times are incredible tough and it hurts so much, we can attest to the fact that God has never once left us to walk this difficult journey alone.

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.

A verse for Ava…

Our little Ava is a very sick girl right now in critical care.  Yesterday afternoon her temp started to come up and her heart started beating faster and it was still high at 10:00 last night so I came back to the hospital to stay with her.   Around 4:00 am she still had the high heart rate and wasn’t settling so the team from the critical care unit came up to assess her and eventual brought her down to their unit.

She spiked a fever of 41 degrees after we got here so she clearly is fighting some sort of infection or virus.  And that combined with a very poor functioning heart is not a good combination.

Right now she is laying on a cooling mat to bring her temperature down and she is sedated and on pain killers.  Her heart rate does seem to be dropping and she is comfortable, but now we have to wait and see what God’s plans for Ava are.

Our beloved pastor Norm and his wife Cindy came to see us yesterday along with friends Dawn and Cory.  Dawn gave me this verse for Ava which I love and is so perfect.

Psalm 73:26

 My flesh and my heart may fail,

    but God is the strength of my heart and my portion forever.

 

Once again, no matter what happens, God is our strength, forever!

Up and Down

If this journey starts to feel like a teeter-totter ride with all its ups and downs, I do apologize and honestly can say that I wish it was different!   Ava had that great day on Friday, but then didn’t have as good of a day on Saturday and then when I came in on Sunday she didn’t look great at all.  She was breathing really fast and didn’t have any energy and so I went and found someone to tell me what the Dr had said on rounds as I had missed it.   Well they hadn’t said much about her fluid balance, but when I had our nurse check it for me, Ava was quite positive (retaining fluid).

So I went and found the Fellow (Dr) who was on for the day to ask if we could give her an extra dose of lasix as Ava does not like to be fluid over-loaded .  Unfortunately this Dr didn’t know Ava and hadn’t examined her so she didn’t think that giving Ava extra lasix was in the plan, and was kinda being a pickle about it,  even when I explained that when they had switched things to give her lasix less frequently, it was with the stipulation that if she needed more they would give her an extra dose.

Now I know Ava and I know what she needs so I found myself getting a little frustrated that this Dr wasn’t listening to me, but just at that moment, the staff Dr who I had thought had gone home for the day came up to us while we were talking, asked what was up and when I explained the situation he said right away to give her another dose of lasix!   Phew… it was so nice to be heard.

But Ava still wasn’t great this morning when I saw her, and the team had quite the discussion about her on rounds today.   Ava was still positive – fluid overloaded – but she’s maxed out her lasix dose.   She doesn’t look puffy but it seems that the fluid is there, just not where it should be.   So they did give her a dose of metolazone – another diuretic that works with the lasix to help get rid of some of the fluid, but they were hesitating as they don’t want to dry her out too much.  But since this fluid balance thing just isn’t getting better,  they decided to go up on her IV heart meds – milrinone.   This is kinda scary because there are only 3 doses of  milrinone they ever give… .33, .66 and .99.   So Ava was on .33 and is now on  .66 – her heart is just getting worse all the time and I don’t like the fact that we were only on the smaller dose for a such a short time before having to move up.

So I asked the Dr if Ava was running out of time in her wait for a new heart, but he reassured me that there is always another drug they can give her, which I didn’t really find all that reassuring.    But I guess it’s all a part of buying time until Ava’s heart comes in, so we keep waiting and doing what we gotta do.

But something cool happened tonight.   We are also followed by the PACT team, the advanced care team at Sick Kids, just in case it gets to the point where Ava won’t be able to hold on till her heart arrives.   They are very kind and when they found out that we’ve didn’t have a family picture with Ava,  they arranged for a professional photographer to come to the hospital so we could get some pictures of our family.  What a huge blessing.   Huge.    Isn’t God good?  So we got dressed up as best we could tonight and had some pictures done, it was pretty amazing.

So we can honestly say that even though this journey is a crazy teeter-totter and a very stressful one to boot, no matter what hurdles we face,  God is going before us and meeting our needs like we could never imagine.  It still doesn’t mean it’s fun, or not painful, but at least we know who we can put our trust in and He’s never let us down.

I can’t wait to get the picture back of our sweet little girl!

This little turkey…

So this little turkey… one day she has me thinking that she is not long for this world, and the next day she is happy and has more smiles than I’ve seen in a long time…

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Her uncle John and aunt Erin came to see her and she couldn’t stop smiling… (thanks guys for taking these pics!)

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I can’t tell you how wonderful it makes me feel to see her looking so amazing and so happy to boot.

Partly I think she’s doing better because they are figuring out her fluid balance and they are giving the right amount of lasix as the right time.  With her heart functioning so poorly, it’s  just not able to move fluid properly, so she needs the help removing it.   It’s very clear that when Ava is fluid over-loaded she doesn’t feel good, but when she’s balanced she feels better!

She still is needing oxygen as you can see, and I wouldn’t say that she is getting ‘better’, but she is rallying and just to be able to keep her happy and stable would be a blessing.

Isn’t God good?   Each and every time when I feel like things just can’t go on,  God proves again that this Ava story is NOT done and He still has a plan for her.   Our job is to keep trusting and holding on through the ups and downs, and just wait and see what God is going to do.

Thank-you once again for all your prayers and support.   God knows that without it, we just couldn’t do this journey.

Oh my little turkey Ava, I love to see that smile!!!

Day by day

There has been so much going on these past few days.  Ever since we’ve listed Ava it feels like a whirl-wind and it’s been so busy and I haven’t been getting much rest or down-time and I think I’m feeling my age.  There is a woman who comes once a week to give quick 15 minute massages here at the Ronald MacDonald House and I got one this week and she was a little surprised at how tense my shoulders were… a little bit of stress maybe?   🙂    But Jason has just left with the kids to go home for a few days, so that leaves me here with just Ava  to concentrate on, and that’s good because our poor little Birdy has had a rough couple of days.

First off, two nights ago I had gotten to bed late and then was up with Erik at 1:30 am as he woke up in pain, poor guy.   We got him sorted out so I got back to sleep after 2:00 just to be woken up at 4:30 by the hospital calling to say that Ava’s heart was beating super fast and they thought her heart had maybe gotten into an arrhythmia – not good.   So off I went to the hospital and thankfully she was feeling  a bit better by the time I got there, and we both could go back to sleep.   But you could tell that she wasn’t feeling great yesterday, and then today she really hasn’t been feeling good at all.  She still has a bit of a cough left from the para-influenza that she caught, and that is bothering her, but her poor little heart has been beating super fast today, and she is back on oxygen and just not feeling well at all, so they gave her some morphine this morning and she slept most of the day.

I’m going back to the hospital now to spend the night with her and I would ask you to pray.   Jason and I aren’t dumb, we know Ava is a very sick little baby.  I want to hope for a new heart and I do, but my prayer is that if God isn’t planning on sending her a new heart, that He wouldn’t keep her around here to suffer, you know what I mean?    I just have such a hard time seeing her uncomfortable or in pain, especially after everything she has been through and Jason and I both feel that we just want God to heal her, one way or the other.

Oh my precious sweet baby.  It’s very hard to watch you go through what you do, day after day.   Oh God, please be merciful to Ava.  She’s in your hands.

Amen.