He will never fail….

Well it’s pretty amazing, but Ava has been feeling a lot better the past two days.   And she has been losing some weight – which is fabulous as she has some water-weight to lose, and her liver is smaller than it has been in weeks.   And that of course is a good sign because it means that she isn’t so congested with fluid.      But she was being a turkey yesterday, because she seemed to be the happiest when I wasn’t there.   Three times yesterday she was happy and smiling at the nurses when I wasn’t with her… and I’m with her most of the time.  Apparently I need to get to the hospital around 7:00 am, not go for lunch at all, and stay till after 8:00 pm…  oh dear. 🙂

But thankfully today I did get some smiles out of her, and it just makes my heart so happy to see her happy.   She still doesn’t look as good as she did a month ago, but she’s still here and she still can smile and we’ll take it with thankful hearts.   And I’ve been able to cuddle her again!    When Ava doesn’t feel good she doesn’t like to be held,  she just arches her back when I pick her up and wants to be put down again, and so for the past while I’ve been starved for snuggle time.     But last night since she was feeling better, I took her out of her bouncy chair as she was falling asleep, and she snuggled down in my arms and it was just so wonderful to be able to hold her again.    This afternoon when I took her for a walk around the unit (her huge IV pole in tow) she actually cuddled right into my shoulder and she hasn’t done that in ages and it’s a sure sign that she is feeling a little better.   Isn’t God good?

And so we are truly grateful.    And I’m glad to have something to be thankful for,  because lately I just can’t help but think about how much our family is missing out with our baby in the hospital.   Sure the kids are having fun doing things they normally wouldn’t have a chance to do, but we aren’t home, and I long to be home.   We would have had so much fun this summer with a healthy 7 month old,  Ava would have loved the pool and the kids would have had so much fun playing with her… and I feel like Ava’s babyhood is slipping away.   And not only that, but because she is so weak, even though she is almost 8 months old, developmentally Ava is probably on par with a 3 month old in terms of physically ability.   If a new heart comes we will have a lot of work to do catching up, but I guess that’s the least of our worries right now.

But I have to stop myself from feeling too bad for us, because I’m learning, self-pity doesn’t get you very far.    And when I start looking down,  I tend to forget to look up, and I need to keep looking up and keeping putting my faith and trust in God.  He does know what He is doing and He has a plan.  In fact,  a friend sent me a text the other day and I’m going to share it with you… I get teary every time I read it…

Do not despair
God is always good
I will see the goodness of the Lord in the land of the living
I know that you have a future and hope for me, 
and I know that you work all things for good to those who love you.
I will NOT despair God, you are always good.
Psalm 27:13-14  
I believe that I shall look upon the goodness of the Lord
    in the land of the living!
 Wait for the Lord;
    be strong, and let your heart take courage;
    wait for the Lord!

(thanks Isabel!)

So instead of feeling sorry for myself and my family (which is so tempting!!!!!)  I think I will choose instead to be thankful and to trust a great God.    And there are lots of things to be thankful for… for friends and family who are doing such an amazing job supporting us through prayers, words and physical means.   For a place to stay, for a great hospital… for being able to be together as family and an amazing God who will never ever fail us.

Please pray that I would continue to choose to look up… lately it’s become more of a battle,  maybe because I’ve been alone now for a few days and without Jay and the kids here I’m more prone to feel sad.    That and I feel like journey is starting to wear me out!!    But even when my heart is weak, my mind knows that strength comes from the Lord and if I keep choosing to trust, He will never fail.    He will never fail.

Amen.

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This storm…

Thank for everyone for your prayers!  And for your encouragement… once again.  The emails and the comments we receive on this blog mean so much to us, and I wish I had time to answer every one of them, but without the kids here I spend way more time at the hospital and even now I should be sleeping, but I’m not.  Oh well.  But thank you.

So this morning it was nice to see Ava actually feeling Ok and even though she wasn’t smiling, she let me hold her and I took for a quick walk through the unit.  Her heart-rate was low and her oxygen saturation levels were good,  and she seemed very comfortable.    Her fluid balance was actually positive, but on rounds they decided not to diurese her further, because that tends to send her electrolytes and things out of wack and they wanted her to hold steady for a while.  I had mentioned last night that I was going to ask about taking Ava off of Midazolam, but seeing how Ava was so comfortable this morning, one of her nurses cautioned me not to rock the boat, and I agreed, the girl really seems to like her morphine, midazolam combination.

So things were going well until the PACT team came around, you know, the palliative team.  And the Dr who is on for the next few weeks is one that we have been talking too since the beginning, and I think he was sad to see Ava now, even compared to a month ago.   And we talked about our goals for Ava.    Jason and I have already decided that we aren’t going to do everything to pursue a heart… as in we don’t want to send her down to the critical care unit, we want to keep her on our current hospital ward and  we want Ava to maintain some sort of quality of life.     It’s so hard because I think I’ve said this before, but if someone could say that a heart was coming in a week or two, that would change everything.  But seeing Aleeda who has almost been waiting for her heart for a year, I have to think that the wait could be a long one.     So we just talked about what might happen if we felt that Ava was starting to suffer, and even though we try to be rational and reasonable, as Ava gets worse, and we have to start facing the possibility of life without her, and it’s very upsetting.    It’s hard to be in a situation where the roads look so very different.  And every day the question is, will God send Ava a new heart?   Or will He take her home?  And we keep waiting.

So after they left and Ava was settled back down for a nap, I decided to come back to the RMH for lunch and a rest… but my heart was feeling very heavy and I didn’t really want to go back to the hospital.    But as I walked back I was praying, and talking to God and telling Him that through this, He has always given me exactly what I’ve needed, just when I needed it.  And I knew I could trust Him, but I just needed a little something to keep me going today.   And then when I walked into Ava’s room, the nurses were all excited to tell me that Ava had been awake and smiling and happy and I could just feel my heart praising God, knowing that life is not over yet for this little sweet Birdy of ours.

Last night our nurse was singing a song to Ava by Casting Crowns called Praise you in this Storm.  I wasn’t familiar with it, but I looked it up and the song could have been written for us. Here are some of the words..

I was sure by now
God, You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear You whisper through the rain
“I’m with You”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I definitely could call our life a storm right now,  the conflicting emotions alone would qualify!   I never quite know if I’m happy or sad,  hopeful or fearful at any given time.  But one thing I am sure of, that God is going to bring us through this storm, and like the song says, He certainly has never left our side.    He is going to be amazing, like He is each and every day as He proves His faithfulness over and over again.

One more day and this story isn’t over yet!

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!

Poor baby….

Oh our Ava.  This morning I got a call from the hospital at 5:00 am to tell me that Ava wasn’t doing well again.   I made my way over where I found her once again with an elevated heart-rate, a fever and on oxygen with her CPAP.   They had already given her morphine and had put ice on her head, so her temp was already coming down and she seemed much better quite quickly.

When the nurse practioner came to examine her at 9:00 am, she found that Ava’s liver was huge and congested with fluid, and so it seems that Ava is the poster child right now for congestive heart failure….   her heart can’t move blood around effectively and fluid is backing up in her liver.     Ava had been given extra diuretics on Thursday and yesterday afternoon it really seemed like it was working, as she appeared to be feeling better and actually smiled for me.   She was awake and content for a bit as well,  so we were getting hopeful that things were looking up.

But I guess when that when that drug wore off last night, the fluid started to back up again.   And unfortunately I really think that when Ava’s liver is huge it hurts her.   There is another mom on our floor whose daughter is 12 and is also waiting for a heart,  and she said that when her daughter’s liver is huge,  it makes her daughter cry it hurts so much.   And Ava today seemed to be in pain, and when she was awake she was whimpering and crying and was very hard to settle, even with morphine.  And it breaks my heart but she doesn’t even like to be held when she doesn’t feel well…  and that makes me feel helpless.

I don’t normally go back to see Ava after dinner, but tonight I did in case she woke up again and was unhappy and hard to settle.   But I was pleased that when she did wake up she wasn’t upset, and even though she still looks puffy she seemed way more comfortable.    She sat in her bouncy chair and I gave her some milk to drink, and then she actually did let me hold her for a while, which was so wonderful.   And then she wanted to go back to sleep.  Her heart rate was low and her sats were great and she settled quickly,  so I am hopeful that she will have a good night tonight.

This waiting is hard!  And it’s taking its toll.  I’m feeling a little down….  and I think Jason and I are both a little afraid of what might be coming.  But then I don’t really want to go there when Ava just might rally and God might send a heart.    I sent out a prayer request to our church today and I’m so thankful for people praying and like I keep saying, we don’t know what the Lord has in store… and we know He’ll see us through.  But this not knowing and living the reality of that each day is exhausting.

So please keep on praying for our poor baby, and pray for us as we wait.

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!!

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!

Groundhog Day

So have you ever seen the movie Ground Hog Day?  The movie where Bill Murray is a weatherman and ends up living the same day over and over and over again?    Well I used to love that movie, but as my friend Tanya pointed out,  it feels like we are living that movie right now, because every day feels exactly the same as the next… over and over again.

Every day I’m at the hospital – every day I do the same thing and it gets a little monotonous.  Thankfully the days go by fast, but I’m really missing my family this week.  The nights are long without them and I miss having the kids come to the hospital to hang out with me and visit with Ava.    And it doesn’t help, but lately I’ve been thinking about what my life would look like right now if I wasn’t here…  and I just know that our family would be having so much fun with a healthy 7 month old Ava at home this summer… oh dear, I better come back to my reality.

So yesterday was good and we were all pumped about having Ava’s double lumen picc,  and they started her on a lasix infusion.. meaning that she is getting her diuretic now 24 hrs a day, which should really help with her fluid balance.     It also means that her heart meds never need to be stopped and that’s another great thing.

And everything was going well yesterday until around 10:30 am when I went to go pick up Ava and something tugged.   She started crying and I put her down to see if any wires had pulled, and I was horrified to see her new double lumen picc looking like it had been partially pulled out of her arm.   I think I almost went into shock and the nurse came running and I felt sick to my stomach because I knew what Ava would have to go through to get it put in again and I just felt terrible.

Thankfully as it turned out,  it didn’t actually pull out at all, just the securement device had pulled off her skin and the excess line had uncoiled to make it look like it had come out.    It was certainly a huge relief that it was still in place, but I still felt keyed up, and I was very very careful about picking Ava up the rest of the day.

And thankfully it does seem like the lasix infusion and everything is helping her, because this morning Ava woke up really happy!  She was awake before I got to the hospital, so the nurses gave her a bath, got her dressed and took her for a walk before I even got there, but they said that she was so smiley and she hasn’t been that way ina  while and I was very happy to hear it.

And we also got a positive blood culture today – hurrah!   Meaning that after weeks of fevers,and doing blood-work looking for some culprit,  they finally found some infection in Ava’s picc line!  But since this is a new picc line, the dr said that there could have been a pocket of infection near the site of the old line, and then when the lines were switched the pocket was penetrated.   But it’s just great to have Ava on the antibiotics for a reason and hopefully after a full course of them her fevers should finally be a thing of the past.

But unfortunately today we had a not-so-nice repeat of yesterday…  as Aleeda – our little friend from across the hall – had her picc line pulled out for real this afternoon… UGGGG!!!   As you can imagine, it was chaotic again as they had to x-ray her to see where the line was,  and then she had to get an IV put in and the IGT nurse that comes to check on Ava and Aleeda’s line got a little upset that it happened two days in a row, this time for real.  And it was just one more thing in a day when the whole floor seemed to be going crazy today – I seriously ended up with a headache just from the super-charged atmosphere in our ward today.  Isn’t that crazy?

But tomorrow I am thankfully escaping my Groundhog Dayish life and I am going home to help Jason pack up the kids and bring them back here and I am GLAD!  I will miss Ava, but it will feel good to at least get a tiny break from this life.  As they say,  a change is as good as a rest!!

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.

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!