1000 Cards

One of the mom’s I’m getting to know well here at Sick Kids has a daughter Aleeda.  And Aleeda has the same heart condition as Ava, but after her second surgery last summer her heart function was so poor that they said she needed a heart transplant.

And so the wait for a heart began.

And 7 months later they are still waiting.

And the waiting is hard, because Aleeda is not getting better,  it seems she’s getting worse.   And since January 2nd when we got here to the fourth floor with them, two other baby’s have received hearts – and they haven’t been waiting as long as Aleeda.    And it’s hard to understand.  And this mom does have a strong faith in God and knows that God has a plan for her daughter, but it’s so so difficult to see your daughter deteriorate and know that unless a heart comes soon…. well I think you get the picture.

And Aleeda’s first birthday is next week – and I was just on Ann Voskamp’s blog,  A Holy Experience and she did a beautiful post that talks about Aleeda and how they are a part of wanting to give Aleeda  1000 birthday cards for her birthday next week!!!!    Knowing that even if we can’t get her a heart,  we can still show God’s heart for her.

He does love Aleeda and He has a plan.

So if you have a second today to write a birthday card to this beautiful little girl…

aleeda

please do so and mail it to me ASAP at the Ronald MacDonald House at

240 McCaul St  Toronto, ON M5T 1W5

And I will pass them along.

Oh please God, hear our prayers and provide Aleeda with a heart!

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Echo was good

Sorry to take so long to update on Ava’s echo-cardiogram that happened Monday morning, but I am happy to say that it came back saying all is well and her heart is doing fine.    We were definitely happy to hear that.

And then there is Ava’s tummy which has caused her so much grief, and well it’s interesting.   Because she had to be sedated for her echo, they didn’t let her eat for 4 hours before.   But then the echo was an hour late so it ended up she didn’t eat for 5 hours.  And then Sunday night, so the night before her echo,  the nurse that was on (his name is Steve and he goes to Harvest Barrie – cool huh?) didn’t like how there was so much pressure when he tried to get air from her ng (nasal gastric) tube, so he ended up replacing it.  And when they measured for the new one they ended up adding 2 centimeters to the length so it is a longer tube.  And then for a brief time after these things happened,  so  Monday night and Tuesday all day and then last night Ava’s tummy has been wonderful  and hasn’t given her much trouble at all.   So was it the new NG tube?  Or the little fast that she had, that gave her tummy a break?   We’re not sure but it was so nice to have Ava happy and sleeping peacefully.

But then today happened.    Oh boy.   So it started when we were working with the  Occupational Therapist to try to get Ava better at her occupation of being a baby.  hahahaha.  But seriously, Ava needs help learning how to take a bottle.    I had mentioned in my last post that Ava used to take a soother when she came up from the Critical Care unit, but with all the gagging and retching she did while she was on formula has finely tuned her gag reflex and now she utterly refuses to take a soother or a bottle.    But because the OT still thinks that Ava is not completely recovered from her vocal cord paralysis and still needs thickened fluids so she won’t aspirate,  she tries to get Ava to suck on bottles with thickened formula, even though we all know formula hurts her tummy.  But Ava needs to know how to take a bottle so she can do the feeding study where they x-ray her to see if she actually needs thickened fluids.  Confusing I know.

Anyway, so Ava got a bit of formula from the bottle, and her session with the OT made her 12 pm feed late.  So then to get her back on track we started her next feed on time which didn’t give her a full three hours between meals,  which made her start to complain.   And then to make matters worse I gave her a dose of pro-biotics (thanks for the tip Vanessa!!) at the same time, and I think the combination of formula, too much milk in general and then pro-biotics which the cardiologist fellow says can cause gas when you start using them – have all combined to give her a not so happy tummy again, oh man!!!   This could be a very long night.

Now she seems settled for the moment, after a hot pack on her tummy and a bath and lots of cuddles, so hopefully it wont’ be that bad after-all.     And please continue to pray for her weight gain, she did gain 6 grams from yesterday to today, but they are actually looking for a 30 gram per day gain and so we have alot of work to do.

But now you know her heart is fine and her feeding issues aren’t directly related to that, so that’s good, but we still have a long way to go!!

Miss Ava’s Tummy

I’m sure everyone we know,  including us, would like to know when we can come home.    And the honest answer is that we  have no idea.    And that’s because the biggest thing holding us here right now is Miss Ava’s Tummy.   Her poor little tummy is giving us so much trouble and because of that she’s not gaining weight like she should.   It seems that she tolerates my milk OK,  but every time they try to fortify it to add extra calories, she doesn’t tolerate it and so they keep having to go back giving her just my milk.    But she just can’t seem to gain weight on my milk alone because she’s burning through it too quick and she just can’t take the volume of milk that she would need in order to be able to pack on the pounds.   Now they are going to try to increase her volume starting tomorrow, but because her heart is already working too hard, they are fully aware that her circulation might not be able to deal with the extra fluid and so they would have to increase her diuretics, and of course we can’t go home on a higher dose of those guys.   So we are still here.

And one of the negative side effects of her not tolerating the formula that they added to my milk was that it was making her gag and retch, which has given her a super-sensitive gag reflex and now she won’t take a soother anymore.  Boo.

So tomorrow she is getting a sedated echo-cardiogram just to see how her heart is doing and hopefully her digestion issues aren’t related to her heart.   She is also getting her feeding study tomorrow afternoon to see if she still needs thickened fluids  because of her vocal cord paralysis, but with her gagging on her soother now, I’m not super confident that she will take the bottle like she needs to for that study,  it’s so frustrating!

So please pray for tomorrow.  If she doesn’t need thickened fluids that would open the door to taking bottles of my milk or even nursing and if her heart function is Ok then it’s one less thing to worry about.

Sigh… who knew a little tummy could give us this much trouble but we are praying and trusting that God will once again get us through this like He has so faithfully gotten us through everything up to this point.   We would really like to come home soon, that’s for sure!

And she’s 6!

So sweet Sarah turned 6 today!   It probably wasn’t the most memorial of birthdays, but thanks to Jason there were balloons and pancakes for her in the morning, and after breakfast Grandma and Sarah walked to the hospital to see Ava and I.   And there was a little something waiting here for Sarah….

Her very own bravery beads…

braverybeads

Here at Sick Kids, the kids can collect bravery beads, and there is a different bead for every test, procedure, poke etc, that a child might get.  And we’ve been collecting the beads for Ava while she’s been here.   And as you can imagine,  Ava’s bravery bead strand is about 3 feet long by now, which is kinda makes me sad in a way, but then there are kids here with miles and miles of beads.

Anyhow, so Sarah really liked Ava’s beads and whenever she saw them she would say, “But I’m brave too!” referring to all the pokes and needles she gets now with her diabetes.    So when I was talking to my wonderfully kind nurse Jessica yesterday about how Sarah loved the beads and how I was thinking of starting my own version of bravery beads for Sarah,   Jessica said that she deserved the Sick Kids beads because she was a patient here, so she put the above beads together for Sarah while I was gone for dinner last night.    Sarah loved it.  And it didn’t take her long to string them up…

sarahbeads

And then I had bought her a ton of beads to have at home so that she can add a bead for every finger poke and needle she gets… and yes there are going to be a lot, but hey, if it makes her feel better than I will buy her beads until she’s 20. 🙂

Then she got some cuddle time in with Ava..

sarahava2

She had held her earlier in the week as well…

SarahAva

And Sarah is a such a good big sister.  At one point Sarah and I had gone out to get her a snack and when we came back Sarah wanted me to get her some water and ice from the kitchenette, so she said to me, “You go get the water, I’m going to the room to check on Ava.”    I love it.

She also had presents and cake – and yes, diabetics can still have cake – and I think she enjoyed her low-key birthday with her family.

Oh our Sarah.   You are brave and so strong and so sweet.   Your daddy and I love you very very much and are so blessed to have you.

Happy 6th Birthday Sweetheart!

What they’ve been doing…

I thought I would take this opportunity to share some pictures of a few things our other children have been up to since they came to Toronto.  And although the kids miss home and everyone there, they really love staying at the Ronald MacDonald House because it really is a wonderful place.  We are planning on taking some pictures or doing a video tour soon just so everyone can see just how cool it is.

One of the awesome things that happens here is called ‘Home for Dinner’.  This is where different groups of people – mostly companies – come in and cook dinner for everyone in the house.   You can imagine that this a huge blessing and we are always very thankful to not have to scrounge up a meal for our family.    Normally when you use the big common kitchen at the Ronald MacDonald house you have clean up after yourself and wash your own dishes in, but when a group does a Home for Dinner’s they typically do all the clean-up as well.    And this was the case last night, except somehow Erik ended up helping these people wash all the dishes and the little sweetie-pie stayed and helped until they were all cleaned up and then he was sad that he had to say good-bye too all his new friends.  Oh our Erik.

OK – so getting back on track here – the week before Christmas we had two Home for Dinners that came complete with Santa Claus’s and presents for each one of our kids, it was so amazing.     We were actually pretty stunned and really didn’t believe they were handing out gifts until they started calling our kids by name.    Sophy wasn’t sure about Santa and wouldn’t go near the first one, but when the second one came around a few nights later she found out he was good for a cuddle…

sophiasanta

By the time the third Santa came for a visit Christmas morning she had gotten the hang of things and tried to put in a request for what gift she would like to receive  – the little turkey.

And the other kids enjoyed Santa too..

willsarahsanta

Here’s Erik with a different Santa. 🙂

Eriksana

And I wanted to sneak in a picture of the view of the courtyard at the Ronald MacDonald House from the hallway just outside our door…  it definitely looked nice and Christmasy after Christmas when the snow fell. 🙂

RMHCourtyard

And then two Sunday’s ago we had some special guest come to the RMH for a visit…

starwars4

Yes, we were invaded by some seriously real looking members of the Imperial Fleet.

startwars startwars2 starwars starwars2 starwars3

And since we are huge Star Wars fans, it was quite enjoyable.   William got right into it and when they came in he was shooting at them and hiding and the Storm troopers were good sports and played along.  Darth Vadar even came equipped with some very heavy breathing, I think he freaked Sophia out a little. 🙂

Then at the beginning of January, Jason took the kids to High Park in Toronto.    Apparently it’s a huge park that we will have to explore more when we are here in the nice weather for Ava’s next surgery.   We found out about this park when it was shown on Mike Holmes TV show “Make it Right” , as Mike Holmes and his crew had rebuilt some of the play structure this past summer after an arsonist had set a fire that destroyed a huge park of it in the spring.     I’m sad I missed the trip, it looked like fun even in the snow and cold…

highparkkids gilshighpark highparkerik

And of Erik tried to pull the sword out of the stone…  what a nice touch Mike.

ErikSword

So yes, the kids are keeping busy and making lots of memories which is so nice.   We also took them to the ROM one afternoon as the Ronald MacDonald House had free tickets for us.  I wish we could have had more time there as there is so much to see.  Sophia got bored there pretty quick and wanted to leave, and then asked to go back to the museum for the next 3 days… it figures.

The real blessing in all of this is that the kids are going to school at the house!  The house has a whole little school area set up with two 2 teachers and although the school days are shorter,  I’m sure they get lots of one-on-one attention and they are doing a field trip to the Science Center next week, how awesome is that?    And we are just so glad that they aren’t going to get too behind with school which is amazing.

So that’s a bit of what they’ve been doing.    And thanks to Jason who has been taking amazing care of them – and doing it single handed while I’m here at the hospital with Ava and I can’t say how much I appreciate him.  It’s funny though, I do feel out of touch…  it’s like taking a weird vacation from regular life and my typically responsibilities as a mom.

So we are doing good – and even Ava is still doing great, still trying to grow and learning how to drink from a bottle.    She took 7 mls today which is a start and I’ll try to update you all on her tomorrow.

Just glad I could finally show you what the other kids have been doing!

We are here till we grow…

So it would seem that this little monkey…

ava

Needs to grow into her shunt!  She finally had her echo-cardiogram this morning and praise the Lord her heart function looked good – which is such a relief because that had Jay and I  really worried.

But now that they have ruled out that her heart isn’t working too hard, they’ve basically said that she is sending too much blood to her lungs because the shunt is too big – too big on purpose because it won’t grow and she will – and that is why her oxygen saturation’s are at higher levels than they would like to see for a baby who has had the Norwood heart surgery.

So the consensus today on rounds was that we have to stay here at the hospital until Ava grows into her shunt!    Oh man!  So does that mean days, weeks or months?  I have no idea.  Thankfully another cardiologist came by this afternoon and said that they really don’t want to hold us hostage here, and that if Ava is doing well in all other areas, that they would discuss her case with the team and hopefully we might be able to go home,  even though we would not meet the  protocol for sending home single-ventricle baby’s.  So all we can do now is pray and make Ava eat… lots.

And that’s not easy because although her tummy handles my milk just fine,  she can’t gain weight on it because it doesn’t give her enough calories and she uses up more calories than a normal baby would just by living.  And unfortunately her little tummy just can’t handle the extra volume she would need to make up for this – when they have tried to increase her volume she just throws it up, even though she gets fed over an hour.

So they supplement my milk with condensed formula for calories, but she doesn’t tolerate that well either,  so she still hasn’t gotten up past her birth weight of 8 lbs, even though she gets fed every 3 hours around the clock by her ng tube.   And it’s breaking my heart, but she’s having a hard time even sucking on a soother without gagging and retching so please pray that we can get over that hurdle so that she could start to feed orally… the occupational therapist was here again this week trying to get Ava to take a bottle but didn’t get too far, plus it really tires Ava out.

But her little vocal cord is starting to heal because Ava is getting louder every day, so hopefully we can do a feeding study before we get out here to see if Ava can drink non-thickened fluids without aspirating  – and that would open the door up for breastfeeding.   So many hurdles to jump over.

Thankfully she is doing well in other areas, and its so cool that Ava is now meeting our eyes!  My parents came down last weekend and my mom was so kind and stayed with Ava over-night and almost all of the next day to give me a little mini-vacation with my family and when she was here Ava started meeting her eyes and responding!   She was looking right at my mom when she snapped this pic…

avabyoma

And it’s so cool to see Ava start to meet these milestones, even though her prolonged stay in the critical care probably set her back bit.   But back to my parents, it was so great having them here last weekend and then we were blessed even more this week when friends came to  visit us yesterday and today.   We can’t tell you how much we enjoy these visits.  Our kids love seeing friends and Jason and I love it and it just makes us feel closer to home.  Just like when people send us emails or even leave comments on the blog,  we find  it all so encouraging, even though we might not always find the time to respond back.

So we are just going to get into a groove and take things day by day and pray that Ava will grow!

Another busy day…

It’s another busy day here at Sick Kids, and it’s hard to believe that we have  been here for 6 weeks!  The time has flown, probably because the days here are so busy.   Take for instance today,  we have already had a visit from the dietician , a visit from the occupational therapist (and she is coming back at 4 today), two visits from genetics, one visit from someone doing a research study, our daily check-over by our nurse practitioner,  a quick visit with a cardiologist, rounds of course came by this morning where they do their daily chat about Ava and that’s not including the nurse popping in every so often and it’s only 2:00 pm!

Yesterday was kinda more of the same, but it had a funny start to it.  I had been up late with Ava the night before  as her tummy was hurting her and then I was up a few times with her again in the night so I was so tired yesterday morning that I didn’t get up when my alarm went off at seven.  And even though I like to up and be ready to meet the day shift nurse, I didn’t worry because I thought I would wake up when he or she popped their head in the door around 8:00 – except I must have slept through that too.

So I was still sound asleep at 8:15 when in through my door burst the Orthopedic doctor and the resident!  I sure woke up in a hurry, and made an attempt to gather some dignity and look alive and alert as I listened to their findings with my foggy morning brain.

But I’m pleased to say that they only had good news.  Based on Ava’s x-ray of her legs and hips and after their assessment of her, they didn’t find anything clinically wrong with her.    They did see evidence on the x-ray of some previous interruption of Ava’s bone growth, but things are growing well now and she is healing.     She also had an ultra-sound of her hips done yesterday and it was perfectly normal so that was encouraging.  I know that Ava still doesn’t like being moved and complains at diaper changes but as my mom pointed out, she’s probably just sensitive all over , and I just noticed the discomfort of her legs more because that’s the only part of her that was being moved fairly consistently.   But the bone people will follow her up in 3 months just to make sure.

And then because of her Turners Syndrome, genetics has also gotten involved.  They also saw some things on the x-rays that made them curious, so they will also be following up with Ava in another 6 months to see if these things are resolved or need to be looked at.    And when I was talking to them they agreed to another blood test on Ava to determine her Karyotype for Turners – this test will take 6 weeks to get results and I’m really pleased as it should give us some more information on what to expect with Ava in the long run.

So that is that…  but we are still here at the hospital with no plans on leaving anytime soon.   The biggest thing that has everyone concerned right now is Ava’s oxygen saturation levels in her blood.   A healthy person has 100% oxygen saturation in their blood and you need that to live, but thankfully babies don’t have to be 100% and with Ava’s physiology, they would like her to be in the low 80’s.  Because of her single ventricle heart, and how the Norwood surgery works – her lungs kinda steal blood that is being sent to other parts of her body.  So when her saturations are high, that means that oxygenated blood is shunting back to her lungs instead of going out to her body and that’s not a good thing. It could also mean that her heart has to work too hard.   So tomorrow Ava is getting another echo-cardiogram to compare with her January 2nd echo to see what exactly is going on and if her heart function is decreasing or not.  I hope not!  Oh I hope not, we just want to go home.

But God still has a plan.  It’s cool today because when I was talking to genetics, the Doctor  asked how I could seem so relaxed and calm with all we are going through, and I could reply without hesitation that it was our faith in God.   My soul definitely has grown weary through this long journey, but God is in the process of restoring me which I’m so thankful for.   I’ve been doing a devotional I found online called  “15 Days in the Word with John Piper” and even though I think that I just found it, I know that God led me too it.  The verse yesterday was this…

Psalm 55:22

22 Cast your burden on the Lord,
and he will sustain you;
he will never permit
the righteous to be moved.

I think when the journey is long, it wears you down.  But then I look back and I can rejoice at what God has done so far and how He has sustained us.  And looking ahead, even though we aren’t where we would choose to be, and even though things aren’t necessarily going the way we want them too, I’m still excited to see what He is going to do.

Thanks again for your prayers, God is still at work!

Quick update…

I’m so sorry I haven’t posted in so long!   For one, I have limited access to a computer now that I’m staying at the hospital and I hate blogging on my phone.  Thankfully I’m being loaned a laptop which will make staying in touch so much easier while I’m staying with Ava, so I should get back in the loop soon.  And I have so much to blog about!    I haven’t blogged about our other kids and how they are doing and I’ve been wanting too.  I will say that they are doing really well…. Jason is doing an amazing job taking care of them so I can concentrate on Ava, and it’s been great that they could start school at the Ronald MacDonald House this week so that they won’t get behind and we can establish a better routine.

Jason is also the diabetes king.  He has totally taken over Sarah’s care and knows her insulin doses and how many carbs she can have and what she can eat and I’m in awe of the amazing job he is doing.   At some point Jason and I are going to have to cross train on the girl’s care so I have a clue on what to do with Sarah, but for right now I’m more than happy to leave it all to him.

And then Ava.   We are definitely not home or ready to come home quite yet.    We still have some things to sort out and the big thing today is her legs and hips.   Since I’ve been taking care of her for over a week now I’m getting to know her better, and it dawned on me about 4 days ago that it wasn’t just diaper changes that made her cry, she was experiencing some sort of pain when we moved her legs.  So the resident came and checked her out and agreed with me and so Ava got an x-ray 3 days ago.   And today they are still trying to figure out what it shows and what it means!  They think that she has some sort of inflamation in her hips and maybe a fracture in her knee… so hopefully today that can get all sorted out and we can start dealing with her pain, poor baby and get some sort of prognosis and treatment plan if there is one.

And because she had a bad day on Wednesday with a very sore tummy we  didn’t complete her feeding study and it’s been delayed until next week.  They think they know why that happened and are sorting her out,  so that’s good, and she does seem to be much better although she still isn’t at her birth weight quite yet, so again we just wait and wait and hopefully she can start getting gaining weight and making some progress.

So that’s what’s been happening in a nut shell.  I’ve also been a bit emotional and down… I think the transition out of the intensive care has been hard and the future at home looks daunting and being away from Jason and the kids so much isn’t helping.    We had a wonderful visit from our friends and pastor Leo and Kim this week and that was very encouraging, and those who knew that I was struggling have sent me some wonderful emails that have been good for my soul,  and I think that I’m on the upswing now.   I know that God is still good and faithful, but I’m just feeling a little worn out,  spiritually and emotionally drained, but I know that is to be expected in a situation as challenging as this one is, but I also know that this valley won’t last forever.

So hopefully I can give an update on Ava’s legs soon and fill you in more on what’s been happening around here.  I can’t wait for that laptop!

The good news, the good news and the bad news

Ok wow, have we been busy!  You would think the days would drag by at the hospital, but I can assure you it’s the opposite, they fly by.     And it’s getting harder to find time to blog since I’m spending so much time now with Ava but I have a minute so I will try to catch up.

So as you see we have lots of news so I’ll start with the first good news…..which is very exciting….  when they did rounds this morning, the Dr said that in the best case scenario we might get discharged Thursday!  Thursday, this week!  How amazing and wonderful.

Now, that of course kinda depends on a perfect storm of everything coming together by then and I’m not so sure that’s possible, but I am very pleased that the word discharge was even mentioned in the same sentence as Ava,  that is such good news.   But even today they were a little concerned about her fluid levels which was affecting her breathing.  And it may be because they decreased one of her meds and if she has to go up on this certain med again we can’t leave.   So like I said, many things have to come together before we can go, but at least it’s being talked about, it’s exciting and scary all at the same time.

Now for more good news… the Occupational therapist came today to try to bottle feed Ava and that little monkey took it!!  She has never been orally fed in her entire month-long life and she did it and actually took 15 ml from a bottle which was way more than expected.  It tired her out though.  Because she is working hard just to live and breathe – and she breathes more than a breath per second any effort like sucking  wipes her out, but she hopefully can build up some stamina and increase her amounts.

Now the bad news… they are more than certain that Ava’s left vocal cord is paralyzed due to nerve damage that she would have gotten during surgery.    And it’s not hard to tell, the poor baby can’t cry, she is very very quiet, in fact her hiccups are noisier than her cry.   So hopefully the nerve damage will heal, hopefully within 6 weeks, and even if it doesn’t, in baby’s the vocal cord on the other side will often over-compensate.  I hope and pray my baby gets her voice back!!!

And what I learned today from the occupational therapist is that your vocal cords protect your wind-pipe when you swallow.  So if they aren’t working, or in her case where one isn’t working, it’s harder to control whether fluid you drink goes down your wind-pipe or your throat to your stomach.   So in order to make  it easier, they have to thicken the fluid that will go in Ava’s bottle… and yes, I am saying bottle and not breastfeeding and that’s our reality right now.   Tomorrow we are doing a swallowing study with her where she will swallow glucose with barium and they will x-ray her to make sure that fluid is indeed going in her tummy and not her lungs – so please pray for that.   It’s not ruling breastfeeding out, just right now we need to wait for her to heal, but don’t worry, we will still practice, and do lots of skin to skin time.

So that is just a few of the the things going on right now -hopefully I can post more tomorrow!