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!

And they’re off…

So today.   Well, this morning when I called the hospital first thing they told me that Ava  was currently sleeping but had woken up previously and had been very irritable and hard to settle.   Because of this they decided to start her on a morphine infusion, to see if a constant steady supply of morphine would better manage her pain, if pain is indeed her problem.    I thought I had better head to the hospital, so after Jason did a quick Sunday devotional with the kids I left to go see Ava.

And Ava seemed settled when I got there, so that was good.  But I hadn’t been there long when I got a call from Jason telling me that a child at the Ronald MacDonald House had come down with chicken-pox.   Now this might not seem like a big deal, but when you living in a big house full of immune suppressed kids, it’s not a good thing.  So in order to control it, the RMH has  cancelled every gathering for at least 5 days…. meaning no summer program for the kids this week, no craft room and no ‘Home for Dinners’.   Oh man!   It was certainly a depressing thought for Jay as it meant he was faced with keeping the kids occupied this week without any help from the RMH, and probably not much help from me seeing Ava hasn’t been feeling well.

Something had to be done, so after a quick phone call, we packed up Jason and the kids and they left after lunch today to join family at a cottage up north for a few days.  It was perfect timing and I’m so glad that Jason and the kids will actually have a fun couple of days, rather than stay here and be bored.

So now there are gone and it’s just me and Ava again for a few days.   The up side to this is that it means that I am able to spend as much time at the hospital as I need too without feeling torn, and I can enjoy a few quiet evenings by myself without feeling guilty. 🙂

And I was glad I was able to stay late at the hospital tonight, because Ava woke up around 6:00 pm and was happy to be off her CPAP and sat in my lap and looked around for quite a while.  I thought she was tired out soon after and tried to put her back to bed but she didn’t want to settle, so our really kind nurse suggested taking Ava for a walk, and Ava loved it!   Now, I think I mentioned that they put Ava on another infusion of a anti-anxiety med the other day, Midazolam, but after looking it up tonight I’m going to request we stop it, because when Ava is awake she seems a little stoned and I don’t like it.   Plus, I think she is just as irritable on it as she was off of it, if not more.     Anyway, after Ava’s walk she was finally happy to go to sleep which I was happy to see.    So it seems that she was feeling better tonight, but the real test will be tomorrow when her big diuretic will have worn off and she just might retain more fluid again. I hope not!

It must be everyone’s prayers, but I feel at peace tonight… even with my family away and my baby not doing that great.    Isn’t God good?   It’s a new week and we’ll just wait and see what God will do.   Again, we appreciate and covet your prayers!

Things don’t just happen…

It has been so crazy around here… crazy and busy and I’ve been so tired, so I apologize for not blogging.

Kinda crazy too because Ava hasn’t been doing that well.  Too be honest when I saw her yesterday afternoon I was pretty sure that we were losing the fight.   Ava’s heart-rate was up and she had a fever and was restless, and nothing seemed to be working to calm her down.   They had tried morphine and a sedative and Advil and Tylenol and she was still restless and irritable.    Her feet and hands were dusky and she is still so puffy, I know she is still extremely fluid over-loaded.   So yesterday afternoon was really hard, and very very emotional.

So when the PACT team came by, we discussed how to keep Ava more comfortable and they thought that maybe pain wasn’t Ava’s problem, but maybe she was feeling anxious, with breathing being so difficult and with her heart not working well.  So we decided to swap out morphine for some anti-anxiety meds.  We gave her a dose right away and it seemed to help and that was great.  She woke up a little later and even though was calm, you could tell that she was a little befuddled… the cocktail of drugs that she was on was a bit much I think.  And then I just start feeling bad for her.   She hasn’t really smiled in days and I know she’s not comfortable, but waiting for a heart is like having a carrot dangling in front of you…  you don’t want to give up the fight in case the heart is right around the corner.     But once again I was praying that if God was calling her home, that she would just go, that we wouldn’t have to take drastic measures like turning off her heart meds or take away her CPAP.    Jason and I both don’t feel right about doing that,  and really, I know that neither of those things can really keep her alive if it is her time to go, so I take comfort in that.

And then just before I left the hospital yesterday, when I was feeling so low…. the Cardiologist Fellow came in.     He is from Singapore and he is wonderful and kind and really knows his stuff, and he’s a believer to boot!!     He said that he thinks that Ava needs to lose about 400 grams of fluid and once he can get her back to real or ‘dry’ weight, she will feel so much better.  And then once again I feel kinda astounded by God.    Here all afternoon I feel like I need to prepare myself to let Ava go and the writing seems to be on the wall, and then a doctor comes in and says that he believes there is still hope, and what he is saying makes sense.   And then I realize that when I try to guess at what God is going to do I never seem to get it right.  I just need to have faith and wait.

And Ava had a good night last night, but this morning at 6:00 am she was awake and really restless and irritable, like she never really has been before.   Again they gave her every drug they could to relax her and finally she slept again.    And then later this morning when she woke up I gave her a little bit of milk to drink, like I always do, but when I was done she freaked out.  So I gave her a little more and she drank it like she had never seen fluid before.  It kinda dawned on me that maybe she was just incredibly thirsty.    Which would make sense… she has a set amount of fluid she is allowed to take in during a day, so when she started IV antibiotics last week, they took away fluid from her feeds so it wouldn’t be too much.  But  IV fluids tend to collect in wrong places, and that is probably how she got fluid over-loaded.   So now they are trying to dry her out, so they haven’t given her all her fluid back to her and so she probably is thirsty poor baby – thirsty like every other cardiac kid on the ward. 🙂       But hopefully in a couple of days she will have lost this extra fluid and we can increase her feeds and she will feel better.  That is the hope, we will see what happens.

I know I don’t have to ask you to continue to pray, I know everyone is praying.  God has been so good and so faithful, and I know that He is carrying our little Birdy under His wing and I know He cares for her so much.    And my friend Christa posted this poem in my comments, but in case you didn’t get to read it, I thought I’d put it here… it’s so perfect.

Things don’t just happen to us who love God
They’re planned by His own dear hand,
Then moulded and shaped and timed by His clock;
Things don’t just happen, they’re planned.

We who love Jesus are walking by faith,
Not seeing one step that’s ahead,
Not doubting one moment what our lot might be,
But looking to Jesus instead.

We praise our dear Saviour for loving us so,
For planning each care of our life,
Then giving us faith to trust Him for all–
The blessings, as well as the strife.

Things don’t just happen to one of His own,
To one that has taken His stand;
No matter the lot, the course, or the price,
Things don’t just happen, they’re planned.
(by Esther L Fields)

Amen.

Going forward…

Well I think my theory is busted… my theory about how perhaps if Ava’s heart-rate stayed low she wouldn’t get a fever.   Last night Ava received morphine every 6 hours, which definitely kept her comfortable and helped her sleep, but this morning her temp came up again.   Oh Ava.   So on rounds today we discussed that since  we have never found any real infection in her blood, and Ava has lost so much blood due to them testing her that she is close to needing another blood transfusion, we are no longer going to chase these fevers.

That means we are going to stop trying to find a blood infection and after this current course of antibiotics is done, she won’t be prescribed any more when she gets high fevers.   Going forward we will keep an eye out for other signs of infection in Ava, like markers in her blood for inflammation, or increased white cell counts…  and if there really is an infection, they will treat it.  But it does seem like Ava’s fevers are more related to her heart function – or heart failure I guess, and no amount of antibiotics is going to help that.  It’s probably harder on her to be getting these strong antibiotics in the long run.  So even though it would be nice to find a definite infection and a source of these fevers, I’m relieved that they won’t have to take more blood from Ava than they already have.

And today Ava was still fluid over-loaded, so once again was feeling awful, and it was hard to see.  I just hate seeing her so uncomfortable and we know that she can’t breath when she is like that so she didn’t come off her CPAP at all today.   They have increased her lasix and she had some great wet diapers today, and even by the end of the day seemed to be feeling alot better.  And that was great because I was able to take the girls with me to the hospital today and Ava actually smiled for Sophia, it was wonderful to see.

And while Ava was napping today – the girls and I checked out the Starlight room at the hospital.   It is on the 9th floor and it’s amazing!  I can’t believe we have never been there before, with all the time we’ve spent at the hospital.    It has an out-door patio and it was so nice to sit there and relax for a few minutes while the girls were playing.   Here is Sophia in the outdoor portion…

Sophiastarlight

And you can see how some of the rocks are painted… so I painted one for Ava. 🙂

Avarock

Jason and the boys came later too and had fun checking out the Starlight room for themselves and before we left today we all gathered around Ava’s crib and prayed for her.

It’s hard seeing our baby struggling so much… I hope there is new heart ready for her soon!!

When..

Just a quick post tonight… but I wanted to say that Ava had a pretty good day.   This morning when I got to the hospital Ava woke up and I took her off her CPAP and she was really cuddly, she nestled right in and I loved every minute of it.  But then it didn’t take long before she let me know she had enough and she wanted her CPAP back on again and then went back to sleep.  The second time she woke up was around noon – again she went off her CPAP and played with her toys and I took her for a quick walk around the unit.  And then she was tired again and the CPAP went back on, but she had a hard time settling down to sleeep, but thankfully was able calm down with some Advil and slept till about 4:00 pm.   She woke up quite happy and came off her CPAP again, and I gave her a bath and played with her and  then she was tired so I put her CPAP back on and she sat on my lap for a while and then she got  tired, we put her CPAP back on her and she went back to sleep!  This is story of Ava’s life right now.  She can be awake and off of her CPAP for about 45 minutes at a time, and then she spends the rest of the day sleeping.  But that’s OK.   We keep her comfortable and she is generally happy and I just pray she can stay stable until a heart comes in.

And now a little bit of news… tomorrow first thing Ava is getting her picc line rewired to a double lumen!    Which may not seem like anything big, but I’m excited by it. 🙂   Ava gets most of her meds by IV and sometimes they aren’t compatible, like the two she is getting right now.  Because right now her picc only has one line going into it, it means that everytime she gets her IV lasix, they have to stop her heart medication, flush the line, administer the lasix, flush the line and then start up her heart meds.  And now that she is on IV antibiotics, she needed to have a peripheral IV put in and that is just another poke.  So a picc line with two ports will it so much easier to get drugs into Ava, and Jason and I are really glad they are finally getting this done.

And on another note, our family is seperated again this week; the boys had day camp back at home and Sophia is back with my mom and Sarah is spending some quality time with Jason’s mom.   And so Sophia called me tonight from my parents house and in her sweet little 4 year old way asked me… “Mom, when are we going to be home forever with Ava?”  And it kinda broke my heart.   I wish I could give her answer as Jason and I want to know “when” too… but only God knows that.  So we keep on waiting!

Isaiah 30:18 (ESV)

18 Therefore the Lord waits to be gracious to you,
and therefore he exalts himself to show mercy to you.
For the Lord is a God of justice;
blessed are all those who wait for him.

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!

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!

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.

Too much excitement

Well Ava had a great day,  I wish I could say the same thing about myself!

It all started when I was sitting holding and rocking Ava around 9:15 am this morning in our room at the hospital, when I noticed a queer ache in my side.  It quickly progressed to needing to put Ava down and going to sit on the bed/couch in the room, to having to lie down in the room, to having the cleaning lady in my room bringing me the garbage can so I could be sick.

The pain on my flank and side was so incredibly bad that I texted my friend Tanya who was across the hall to come and she got the charge nurse to come see me.   She noticed how white I was, and they took my blood pressure and then put me in a wheel chair and rushed me over to Toronto General hospital, which thankfully is just across the road.    I was in agony and thankfully they got me in quick and stuck an IV in me and gave me morphine.  Now I have had 5 children and have never had an epidural and I swear this pain was much much worse than child-birth, and that’s saying something.

The morphine helped and I was conked out, but around 12:30 pm the pain subsided, right before they came to get me for an ultra-sound.   They didn’t see anything on the ultra-sound, but the tech was pretty sure I had passed a kidney stone, as she could see some evidence even though she couldn’t see a stone.     I eventually left the hospital at around 3:30 pm,  without the Dr’s at Toronto General really saying anything, other than the ultra-sound had all been clear, so I went back to Sick Kids.   But when I talked to Paula,  Ava’s  nurse practioner this afternoon,  she thought that I definitely did have a kidney stone as she had one two years ago with the exact same symptoms.    Can you believe it?    I just have to praise God that I passed the stone in a matter of a few painful hours, rather than a few painful days, but I’m just in shock that I had one at all.  Really, after everything else we are going through, I had to have kidney stone? 🙂     It’s cool though because our prayer team at church kicked in right away and I know that made a difference and I wanted to say thanks to everyone who was praying,  thank-you and know that God heard your prayers!

And the rest of our family is doing well, the kids are having a ball at Oma’s & Opa’s and Sarah is enjoying the time being an only child here with us.  Even though she’s spent quite a bit of that time with Tanya (Aleeda’s mom) who has been amazing and watching her for us while Jason and I have been spending quality time with each other at such places as the hospital. 🙂

Ava had a good day today too and she’s got just the best smiles for us, but still is very dependant on her CPAP.

Thanks again for your prayers, especially on day’s like today that contain too much excitement!