Friends and Birdys

This week is over!   And it’s been a good week – but a busy week and I’m glad it’s the weekend.     The kids have a full week of school under their belt and they all did pretty well.   Sophia loved school on Monday, but cried a few times on Tuesday.  Wednesday morning I had to put her crying on the bus, but I didn’t feel good about it, so at 9:30 am I drove to the school to see how she was.  My plan was that if she was happily playing that I would just turn around and go home.  But her class was still outside and I could see that she was holding her teacher’s hand and when she saw me I could see that she had been crying, so she came home for the day.

When I asked her why she was crying  Sophia said that water kept getting in to her eyes and making her cry…. you know the irritating water that finds itself in your eyes. 🙂   I told her that the water was probably her tears, but she was pretty adamant that it was just the water… and missing mommy.   If things had been different for us, I honestly think that Sophia would have gone to school happily this year and not looked back.  But this year was different and Sophia clearly has some anxiety and separation issues and I don’t see any reason to push her.  I know she will get comfortable eventually, but for now we are just happy to let her take her time.   This morning when she didn’t want to go to school we told that today was the last day of the week and then she would get 2 days off for the weekend.   And her response was, “Two days?  Not eight?”   No, not eight Sophia, little turkey.

So back to our busy week –  Tuesday, Jason and I had a wonderful day in Toronto.  It was so good to go back and be in the place where we spent most of our time with Ava.  And it’s funny how things can change in a year… last year at this time we were making day trips to Toronto for Ava’s echocardiograms and my high-risk pregnancy clinic visits and we didn’t know a soul.  And now when we go it’s like we are going to visit our large extended family.

Jason and I weren’t sure how we would react going back up to the 4th floor at Sick Kids, I hadn’t been up there since the day after Ava died.   But but when I stepped off the elevator so many memories of Ava flooded in that I started to cry.   Thankfully before we even made it to the Ward we started meeting people we knew and after getting some hugs and starting talking I couldn’t cry anymore. 🙂  Can I just say how much I love our 4D nurses?   And it was so cool that all the nurses we had the last few day of Ava’s life were there on Tuesday and it was so good to see them again.   They gave such love to Ava and so much support to Jason those last days that they will always be in my heart.    In fact, I feel like all the staff of 4D have become part of our family and we are so blessed to have them in our lives.  And they make me laugh, and they helped keep me sane through those tough times with Ava, so I will be going back to visit them for a long long time.

We also were able to spend time with Tanya and baby Britton and we saw Aleeda!  Oh sweet Aleeda.  She looks amazing and her hair has grown a ton since her transplant and she has grown too – but she is still tired and still isn’t tolerating her feeds and so she is still in the hospital.   Please keep her in your prayers, and pray for her parents Tanya and Brian too as they just want to see progress for Aleeda so that they can see home in their future.  You can imagine they aren’t looking forward to spending their second Christmas in the hospital, and it’s very very tough right now to not see huge improvements after Aleeda’s  heart transplant.  But I know that they know that God has a plan for Aleeda and their lives, and they will continue to remain faithful no matter how hard it gets.

We also went back to our other home-away-from-home…  the Ronald MacDonald House.  And we saw the staff again and met with friends, and it was wonderful to reconnect .  And it’s strange, because we lived there for so long that you might think being back there would feel weird, but it doesn’t.   It just felt very familiar, and I guess it felt just like being home.   Our home away from home.

And then we were back at our real home with our kids and to make the week more interesting we had Sarah’s diabetes clinic Thursday morning.  She had to go to clinic every three months to make sure everything is OK, and I’m happy to say that she is doing great and I think I will give it her own blog post, so stay tuned. 🙂

Otherwise, we are doing OK.   We all have times where our hearts just ache and I don’t think that will ever go away, but we have each other for comfort and I praise God for our family.    And our friends.  Two of my dear friends brought this too my door yesterday….

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A sweet birdy necklace for me to wear to always remember my sweet little Birdy.    And it has five leaves to represent our five children and even looking at it now makes me teary.  It is a beautiful gift.

Which reminds me of the first verse I ever learned… James 1:17   Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.

We know that God is the giver of every good gift and once again, even in this busy week – we’ve been blessed.

His perfect timing

I have some great news for everyone, but I will keep you waiting and first tell you that little miss Ava had another great day.   Our plan was to go to church today, so when I accidentally woke up early this morning I to put it to good use by getting the kids ready and dressed to help Jason out,  and then I left the rest of the getting ready to him and went to visit Ava.    And Ava was so happy to see me!  I got some cuddles and lots of smiles from her and we both really enjoyed our quick visit.   Then Jason and the kids picked me up from the hospital and we went to church at Harvest Toronto West .   And there we heard a great sermon about how God always has a plan, God’s plans are always for His glory, God’s plans are always for our good and that we must believe that God’s timing is always perfect.    Can you believe that was the sermon?  Seriously it was, I kid you not.   Little did the pastor know that he was delivering a sermon tailor-made for us.  And even though these aren’t new concepts, I think it was perfect time for a reminder of these truths.

But in terms of God’s timing being perfect, I am so excited to tell you that our little friend Aleeda from the hospital got her new heart Friday!!!!    She did!!!  It’s so incredible,  because after waiting one full year, she finally received a heart transplant and the wait is finally over.   I am rejoicing with her family and I am so thankful that God has answered all the prayers that had gone up on Aleeda’s behalf.  God is good.

Now, just because Aleeda has received a new heart doesn’t mean that everything automatically is well with her… she is still in critical condition and her chest isn’t closed yet, so please please be in prayer for her as her body adjusts to this new heart.   Just think, all of her organs and brain and even her blood vessels need to become accustomed to a good steady blood flow, something that she hasn’t had in a really long time.  But she is a fighter this little one, and I know that God is going to carry her through this.

It’s certainly my prayer that God will carry her through as Aleeda has definitely found a place in my heart.   She had a room right across from Ava’s, and even today I missed seeing her cute little face smiling at me from her high-chair in the hallway.   She used to lure me over to her by making her kissing face,  even though most of the time when I went over to her she just allowed me to kiss her.  She loves Ava and always smiled when she saw her and her mom has become a wonderful friend to me.   I have been so inspired by how patiently Aleeda’s mom Tanya waited for this heart, the staff at the hospital loved her and so they should, as Tanya never grumbled or complained.    Tanya also has a strong faith in God and we both knew that He had a plan, and it’s so amazing to see God’s plan and timing finally come together.

And it’s another reminder that God can bring a heart!   And so we ourselves just keep giving Ava to God, knowing that she is His child first and foremost and even though this waiting for a new heart – or perhaps God’s plan to ultimately heal Ava in heaven – isn’t an easy road to travel,  we can trust God and wait for His perfect timing.

Amen.

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!!

Diabetes Clinic

Today, Jason and I and Sarah went to the hospital for a diabetes clinic visit.  I was just at the hospital yesterday with Ava to see our Nurse practioner in the Cardiology clinic,  it’s like our new home, fun!  🙂  Oh and Ava is doing well and on the mend thankfully.   She started smiling and talking again yesterday,  so it’s such a relief to see her feeling better.

Now London isn’t quite big enough to have our very own hospital completely dedicated to children – but we do have different children’s sections in the hospital and everyone that we have met so far that works with kids has been wonderful – and that extends to our diabetes team.

We met our diabetes nurse and talked about how Sarah’s blood glucose numbers have been.  We met the dietician to talk about how our carb counting and meal planning have been going.  We quickly met Sarah’s endocrinologist – who is also going to be Ava’s endocrinologist.   And we met with our diabetes social worker.  His job to is to make sure that we are coping well, and that Sarah is doing well and to see if we need any extra help in any area.

So it was quite a long appointment, but very informative.   And I’m happy to say that I now am more comfortable with injecting glucagon – which is what we would need to give Sarah if her sugar gets so low that she wouldn’t even be able to take juice or any kind of sugar orally.   It’s a true needle – which is different then the pen needles we use to give her insulin, so it wouldn’t be as easy, but you gotta do what you gotta do!

Actually, before we left the hospital with Ava last week they talked about maybe switching her blood-thinner from baby asprin  to an daily injection in her leg… no!   But thankfully they decided that she was doing well and since she hasn’t had any problems with her shunt, they  left her on her baby asprin.    I’m so thankful.

I will say it again, there is so much to learn with diabetes, that I’m glad they set it up so that we can learn it slowly.  And Sarah did awesome and got blood work with not even a tear, she is a trooper!

These two girls…

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They certianly love each other.  And maybe God gave Sarah diabetes so she would have more compassion on Ava and what she will have to go through,  only He knows.    But I’m just glad that we have these two girls, diabetes and heart conditions and all.

Home again

So we got released yesterday and brought Ava home from the hospital, hurrah!   It’s so good to be home, although Ava definitely isn’t 100%.   Her nose is still stuffy and it’s only today that she has started to smile again and look some-what happy.    Last night she was tired and lethargic which had me a little worried, so to reassure myself I paged the cardiologist on-call in London to just check to see if Ava’s behaviour was normal.  Thankfully the Cardiologist on call was the one who had seen Ava that morning and she felt that if Ava’s vital signs were good then I shouldn’t worry as it made sense for Ava to be feeling tired as she is still tying to kick this bug.

But praise God – that He kept Ava and held her and that she wasn’t worse than she was.  I had a moment of panic when I brought her in to emerg in London Tuesday night – because while she was being triaged – the nurse asked me to come with her somewhere more private – and she brought us into the trauma room.   The room then suddenly filled with people and dr’s and they started her on oxygen and inserted an IV and I was a little surprised, and then worried because I knew that she wasn’t right – but obviously didn’t see how bad she really was.   I guess the fact that her little half of heart was beating almost 200 beats a minute clued them in that something was very wrong.

I’m so thankful once again that we live close to a good hospital filled with competent people.  And everyone in the emerg at London takes Ava very seriously and I’m glad.   And again,  influenza could have taken Ava’s life,  but God spared her and I am so thankful for everyone’s prayers, so thankful that she is on the mend and is back at home with her family.

But now in the aftermath of getting a positive influenza diagnosis,   Ava’s catheterization is once again postponed and it looks like it won’t happen until the end of May.   Just to recap – the catheterization is a procedure where they will insert a thin catheter into one of Ava’s veins, go into her heart and test the pressures of her heart and lungs to see if she is ready for her next surgery – the Glenn.   And Ava desperately needs her Glenn surgery so that her heart won’t have to work so hard.    If everything goes right, after the surgery she won’t be as medically fragile and hopefully won’t require as much care… but that part is neither here nor there.  She is our child and we will give her whatever care she needs for however long.

And I was blessed to come home to a tidy house with ALL my laundry done thanks to my wonderful mother-in-law who took care of Sophia and lended a hand.   We couldn’t manage it alone with everything that we are going through and we are blessed with all our friends and family who keep helping us.    I keep saying that it’s like we are trying to juggle it all, but no matter how hard we try, we keep dropping balls…   but that’s our life right now.   God is certainly giving us a lot to handle, and as Jason always says, it’s amazing what you actually can handle. 🙂

So we are go grateful to be home and together again on such a beautiful day… Praise God!

Oh drat this cold…

OK – so it’s been a crazy week and it’s all because Ava has a cold.  That’s right, a plain old-fashioned regular cold, but she doesn’t seem to be able to kick it and it’s causing us problems.

And I wrote about how we ended up in emerg on Monday because I noticed Ava was working a little harder to breathe, but were sent home and told to watch her closely.

Then Tuesday Ava was Ok, she was still coughing,  but then Wednesday just before dinner I started to clue in that Ava wasn’t doing so well… she was sweating constantly no matter what she was doing, but her feet stayed cold and were dusky looking, so that was rather worry-some.   When Jason came home and looked at her,  he asked right away if I was going to take her in,  so I called Sick Kids.   The cardiology Fellow on-call told to take her in right away, so we found ourselves back in emerg.

The Dr who was on that night was really great and was so knowledgeable about Ava’s cardiac condition.  He felt that Ava’s fluid levels were a little low and needed topping up.  His reasoning was that with her breathing quicker because of her cold and then with her sweating so much, her fluid levels had probably dropped a bit.   The lack of fluid was affecting her circulation and her heart wasn’t able to profuse her body with oxygen properly.   And so they upped her fluid by giving her an entire feed of just Pedialyte and it worked.   Very soon after her feet were pink again and she just looked better all over.   And not only did we have a great dr that night,  the emerg nurse we had that night attends our church!   We had never met him before, but he figured out that this baby Ava was the Ava from the prayer list.   And since I had been really worried about Ava that night,  it was cool that God arranged for someone to be on who knows what we are dealing with.   And then because our little Birdy looked so great right away and her blood-work came back fine, they swabbed her nose just to see what bug she had and sent us on our way.   That was definitely a record-breaking fast ER trip as we went there and were back home in three hours,  pretty amazing.

However Thursday afternoon I was holding Ava and she was sweating like crazy again and she was huffing and puffing she was breathing so fast.   And so again I called Toronto and again they told me to take her in.     And because they had already been talking with the London cardiology team about Ava, they all decided that they would admit her so that she could be watched for the night.  So back to the ER we went.    And really Ava didn’t look that bad, definitely looked better than the day before, but whenever Ava is doing something she shouldn’t,  they always worry about her heart, and they just don’t want to take any chances.

Avahospital

So we were admitted and Ava was hooked up to the heart monitor and sat monitor, and over-night all her numbers leveled out and looked great.   So thankfully this all doesn’t seem related to her heart function, it’s just her cold wrecking havoc.   After our London  Nurse practioner and a Cardiologist  saw her in the morning, and one of her meds got upped to hopefully help with her sweating,  they said that we could go after we got some blood work.

Not blood work!  Two words I dread to hear in reference to Ava.  And it’s not just because no child likes getting their blood taken, it’s just that trying to get blood from Ava is horribly difficult.  Mainly because as a hypoplast,  her heart couldn’t pump as hard in utero and so she has tiny blood vessels compared to other babies and they aren’t really close to the surface.  So often she gets poked repeatedly before they can get blood from her and it seems to be  very traumatizing for me… and probably Ava too, haha.    So the nurses  started trying, and they tried first tried to get blood from her temples… her temples????  Um yes, although I’ve never seen that done before.   But they tried and it must have hurt like crazy because Ava cried so hard I thought she would burst a blood vessel.     After they tried both sides of her head with no luck, they thought they would give her a break and call someone else in.

So the next nurse that tried though she found a good spot on her foot – but same thing, couldn’t draw back.   It seems that when Ava cries she does a full body clench and they don’t seem to be able to pull back any blood.  But then when they give up and pull out the needle, Ava relaxes and starts to bleed.  Go figure.    So after they stanched the bleeding from her foot,  they decided that after the next poke if it didn’t work they would give up – and so they tried the top of Ava’s wrist and they managed to get a tiny bit of blood from her.  Thankfully they gave up and that was that.  I don’t think I realized how worked up it made me seeing Ava in that much pain until later that night when we were home and Sarah and William both hurt themselves back to back.    I kinda lost it and told them that no one was allowed to hurt themselves anymore that night because my nerves were shot and I couldn’t handle it.   Nice going mom. 🙂

So now we are at home again and we are praying that Ava will kick this cold before it stresses her out more.   The London team alluded to the fact that Toronto might want to delay her catheterization because she is sick,  and that thought is depressing.    Ava needs her next surgery to get stronger and if we have to delay her cath, then we also delay her surgery.   And that would be hard to take as it could push her surgery into the summer and leaves her longer in this place were she isn’t very strong.

But again we get all our strength from God, all His peace and reassurance and hope.  And even with this cold of Ava’s and the awful weather that isn’t helping,  we know that we can get through yet another day by God’s grace alone.  And He is holding Ava in his hand and whatever happens it’s going to be OK.   But I will say it again,

Drat this cold!!!

Spoke too soon…

Well I know that I just posted that Ava was doing well in my last post, but apparently I spoke to soon.  The next morning after that post – yesterday morning – Ava woke up with a hacking cough.. oh no!   And then I noticed that it looked like Ava was trembling while she was sleeping, and sure enough she was breathing much faster than her norm and seemed to be working a bit harder to breathe  as well which didn’t make me happy.

So to be on the safe side I called her pediatrician and made an appointment to take her in that afternoon, but just to make sure I called our Single Ventricle nurse at Sick Kids to see what she thought, and she said that rather than take Ava to the dr, she should go to emerg.  So I packed up everything, and Jason drove us to the hospital.

And they were really good to us.   On one hand  – with Ava being who she is they don’t want to take any chances, but on the other hand, she wasn’t presenting that bad – not like the kid next to us with a terrible case of croup.  That’s the thing –  here I take Ava who I don’t want to get sick,   to hang out with the sickest kids in the city!  But thankfully we were in the isolation room so I kept that door closed.

They ordered a chest x-ray for her to see if anything was brewing in her chest – but thankfully her lungs are clear.  And her oxygen saturation levels are normal, so no pneumonia or anything at this point, which is fantastic.   And since she had just had an echo on Friday they knew she wasn’t in heart failure.   So after telling me that if any little thing changed with her or if I was concerned again to come right back, they let us go home.

But I have to admit that the cough does scare me.   Mostly because it takes so much out of her to cough and after a bad bout of coughing she typically breaks into a cold sweat.   So it’s stressing her out, and I just don’t want her stressed because that is definitely not good for her heart.   We want her to stay healthy so she will be in good shape for her heart catheterization which is only 2 weeks away!

So we pray.    And trust that God will be faithful yet again.  I love how verses come to mind in moments like this and this time it’s from Colossians… chapter 1…

1He is the image of the invisible God, the firstborn of all creation. 16 For by him all things were created, in heaven and on earth, visible and invisible, whether thrones ordominions or rulers or authorities—all things were created through him and for him. 17 Andhe is before all things, and in him all things hold together.

God holds all things together – isn’t that the coolest thing?  I love being reminded of that, and I love the image of the univerise  breaking apart if God withdrew His hand.     So this God who is so big and so able,  can certianly hold together my little baby’s heart.   And I can go to sleep tonight in peace trusting Him to do so.

Amen.

We’re back…

So we are home again!   The cardiologist came to see me about 4:00 pm yesterday afternoon and said that all was well, both he and Toronto were happy with Ava and we could go home.    She had tolerating all her feeds perfectly after we moved her ng further down,  and even though her blood pressure is still a little too high, they have increased the dose of one of her meds so hopefully that should help.      I was a little nervous about the increase because she was on the highest dose of that drug already for her weight and now we have to worry about kidney damage…  yuck.  But as my mom says, there is no such thing as a medication without side effects and the reality is, little miss Ava is on a lot of meds, but at this point there really isn’t much choice so we just have to hope and trust that they aren’t ruining her rather than helping her.

And I think that I can say that I learned a few things through this.   One is that I have to make really sure that Ava isn’t being stressed in any way.  I think in bringing her home I was a little bit too relaxed in that she seemed so healthy and I was sure she was going to be fine.    But it’s just a reminder that I have to watch her like a hawk and keep better track of all the things that are going on with her so that patterns are easily identified – and through those patterns I can catch things quickly before they become big problems.   Thankfully it wasn’t a big issue that brought us to the hospital,  and a quick tweak seemed to fix it so that was very good, but I would rather avoid going there all together if possible.    It’s funny in a way, because the nurse practioner from Sick Kids had said to me just the day before that often these little single-ventricle babies have to make trips to the hospital  in this ‘inter-stage’ between surgeries  to get a tune-up.   They are there for a couple of days and then they go on their merry way again and hey – in the grand scheme of things, there is nothing wrong with that.

So we are home and back to our routine and it’s weird because now I seem to fully wake up at 3:00 am and have a hard time going back to sleep after I’m done feeding Ava, go figure.

And on another note, things seem to be moving in the right direction for getting Sarah back to school.  Jason met with a nurse from the CCAC yesterday so they could access Sarah and I think at least for the first bit there will be a nurse that goes to Sarah’s school at lunch every day to help her check her sugar levels.  And today a public health nurse is going to the kid’s school to do some training with the staff on diabetes so Jason is going there for that as well.  Training of the staff is the biggest hurdle in getting her back,  as they all want to feel comfortable with her and want to know what signs they should be looking for in terms of sugar highs and sugar lows.  So I’m so glad this is happening because we certainly don’t want them to be worried all the time!

So hopefully things should all work out well and Sarah should be back to school on Monday, although I don’t think she has minded her extended vacation.  And poor Sophia is going to miss Sarah so much!  Those two just play all day together and it will be sad to have to separate them.   It has been cute though, they play they are nurses, or that Sophia is a mom with a baby in the hospital.   And once I even over-heard Sophia say, “Pretend that I have diabetes… ok?”  Oh dear, well maybe not so cute after-all.

And then next week Sarah and Jason are going to meet the London diabetes team as our care has now been transferred from the team at Sick Kids to London.   Oh so much going on!  Once again, I am so grateful that Jason is managing Sarah through all of this!  I joke that sometime soon we are going to have to cross-train on the girl’s care, but for now I am so relieved to leave all the carb counting and insulin injections and appointments to him.

So that is where we are at.   And can I say yet again, that everyone’s support and concern for us has been so encouraging! We feel so loved and cared for, we are so blessed to be part of such a caring community and we appreciate it all so much.  And hopefully we stay out of the hospital for a while, because it really is good to be back!

Phew…

We got through this day,  and Ava is doing so much better, praise God!

She stopped bleeding this afternoon and they gave her a blood transfusion and she looks so much better.   And if the bleeding really is done,  they will restart her blood thinners tonight which is another relief.     She looks comfortable, she’s cleaned up, and she seems to be stable again – I say that with a little bit of hesitation, if there is one thing you learn when you are here, it’s cautious optomism. 🙂   But even the chief cardiologist said this afternoon that she looked good, but she still wasn’t out of the woods yet  (I think he meant beacause her chest is still open).

But in regards to that, Ava’s surgeon came by around lunch-time and put this corset thing on her, which they will use to try to close her chest a little every day.  It’s the neatest thing that was designed by a nurse here at Sick Kids,  how cool is that?  I’m hoping that by trying to close her slowly now, they will avoid the shock to her system that the last close caused, and hopefully this time she can stay closed!   It may just take some time to get to that point, maybe 3-10 days.    I know it’s in God’s hands and it’s all in His timing, but you can bet I’ll be praying for the 3 rather than the 10!

And more good news… the kids are coming tomorrow!  Jason surprised them all today, he had his phone on when Sophia saw him so I could hear how she reacted and she squealed!  She was so happy to see her dad.  And then he surprised the other three at the bus stop and I’m not sure I have the facts straight, but I think Jason got tackled.  Thankfully my friends took videos and I can hardly wait to see them.

So it seems our roller-coaster has leveled out for now, I so appreciate everyone’s prayers and support today, it’s been wonderful.   We had a ton of stuff dropped by the house today by our church friends and family for Jason to bring back here with him, and at one point Jason called me in tears just over-whelmed by the generosity of others.   We are so incredibly blessed by all of you!

See, once again God has shown me that that I can trust Him even in the valley’s and He proves Himself over and over, even when my faith is weak.  I just hate how I am so quick to forget!    So please keep reminding me – especially when another dark day comes.

So it’s good to breath a sigh of relief, and followed by that is a yawn, I better get some sleep.

As always, I will keep you posted!

Another machine…

So as of last night, one more machine was added to the already crowded area around Ava’s bed…

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An EEG machine. Yesterday she was getting episodes of high blood pressure combined with her heart beating faster which made them wonder if she was having seizures… not huge seizures, but still, never something a parent wants to hear! So they hooked her up to this EEG machine to be monitored for 24 hours.

And so far so good, I was there just now when the dr’s did their rounds and they haven’t seen any sign of seizure activity in the past 12 hours that it’s been hooked up, praise God. And because of this monitoring, she is now off the muscle relaxants which means that she’s moving a bit and twitching today. She is still getting alot of morphine, but at one point she did get quite agitated so they gave her a sedative. But it is still nice to see her move a little instead of her lying there so incredibly still all the time.

And I think today they are going to give her a tiny bit of food – colostrum that I’ve pumped for her – just to get her started, not enough for nutrition. Of course this will all come from a feeding tube, but at least the food is coming from me which make me feel like I at least have a small part in caring for her, it really is so strange having a new-born daughter but not being able to do anything but stand by her bed and talk to her and touch her hand and her head – except now I can’t even touch her head!

Anyway, we are still thankful that she is here. Thankful for all the small mercies that God is providing. And even though I miss my kids like crazy and still find it hard to be in this situation, we are getting through with God’s help, minute by minute, hour by hour.

And soon that darn EEG machine will be out of here so I can at least touch her head again!