Ava’s Story

I’ve been meaning to write our Ava’s Story for a while.  Since I had to opportunity to write it out for our church newsletter I decided it was the perfect opportunity to put it all together and finally publish it here.  

“They are worried about your baby’s heart.”

This was not the news I was expecting when I answered the phone call from the midwife.  That afternoon I had gone for my routine 19 week ultrasound and in my hands was an ultrasound photo showing a precious baby girl.  We already had four children – so how could something be wrong with this pregnancy after four healthy ones?

Three weeks later Jason and I sat on the edge of our seats at in the pediatric cardiology department of our local hospital.   Even to our untrained eye the echocardiogram that had been done didn’t look normal.   Finally we were called in by the cardiologist and his first words to us were  “Let me show you what a normal baby’s heart looks like, and then I will show you what your baby’s heart looks like.”

All I could say was, “Pass the Kleenex.”

The Cardiologist explained that our baby had a serious congenital heart condition called critical aortic stenosis – where the artery coming off of her left ventricle was so small, it was affecting the left side of her heart.  The most probably outcome of this would be hypoplastic left heart syndrome, where the left side of her heart would stop functioning and she would be born with only a half of working heart.    She would need open-heart surgery right at birth if she survived the pregnancy.   Or we could abort her now, wait until she was born full term and then hold her until she passed away, or try an experimental procedure in utero where they would try to fix the problem.

We left that appointment feeling completely stunned, not really believing this was really happening to us.  I was very emotional and just wanted to go home and cry, but we had to make a decision on the experimental procedure quickly and we knew we needed to talk to one of our Pastors.    Thankfully our Pastor Leo met with us right away and prayed for us and told us that going to Toronto was a ‘no brainer’.

After a lot of prayer and talking things out with family and friends, we found ourselves at Sick Kids Hospital in Toronto a few days.   We had another echocardiogram and talked to another cardiologist. He explained this ‘experimental’ procedure and said that if it succeeded,   baby’s swollen left ventricle would heal and a minor valve repair surgery would be all she’d need after birth.  This procedure carried a huge risk to the baby, but we felt that this was her best chance, and God gave us tremendous peace, so we agreed to have the procedure done.

We walked across the street to meet with the Obstetrician at Mt. Sinai who would do the procedure.  After waiting over five anxious hours to see him, we were finally called in.

The baby was miraculously in the right position and so the doctor and his team wanted to do the surgery immediately.  In a whirl-wind, Jason rushed to have me admitted while I was being prepped.  I was nervous and excited, but mostly hopeful that this would work.  Cardiologists were called from Sick Kids Hospital and the team was minutes away from doing a procedure on our 24 week-old unborn baby girl.

God truly answered our prayers and kept that baby in the right position until she could be sedated, then going in through my belly and into her chest wall they preformed a balloon dilation on her aorta that was so tiny and closed it was hard to believe the doctors possessed the technology and ability to actually try to fix it.   In less than 9 minutes it was over.  We praised God for His goodness, believing that He was going to heal her. The next day after a quick ultra-sound the surgery was pronounced a technical success and we headed for home.

Then came the heartache. In the next few weeks and months as we kept going back to Toronto for more appointments and echocardiograms it became clear that the baby’s heart was not healing.  Even though everything had pointed to God’s hand in that intervention, her left ventricle was slowly dying. We had to face the fact that our baby would be born with only half a working heart.

All that kept going through our mind was why did God allow this to happen if it wasn’t going to work?   We still don’t have the answer for that question. But we just clung to these verses in Isaiah 40:27,28,30b when God asks the people of Israel why they question Him – their way isn’t hidden from Him, He is the everlasting God, His understanding is unsearchable!

And this is where our faith had to kick in.  It’s easy to trust God when things are going right, but now things were going wrong and it was so easy to turn to despair.  But knowing that God knew what we were going through and that His ways were higher than our ways allowed us to choose everyday to trust in Him.  To trust Him and put the life of this baby in His hands.    In the months leading up to her birth and impending surgery, all we felt we could do was trust that God would be glorified however this story played out, knowing that God loved this baby and had a perfect plan for her life.

Our daughter Ava Samantha Grace was born Dec  4, 2012 in the early hours of the morning at Mt. Sinai hospital.  I was prepared for them take her away immediately, but I was not prepared for her to be as purple as a blueberry!   Ava’s heart defect was depriving her of oxygen so they quickly whisked her away to stabilize her.   An hour later, after allowing my husband and I take a quick peek at her she was taken to Sick Kids Hospital.

Two days later I was walking beside Ava’s bed as they took her to surgery.  Jason and I wondered if we would ever see her alive again.  During the long and difficult six-hour wait, Psalm 23 was on my mind.   It seemed like Ava was walking through a valley where death was lurking in the shadows.   We placed our trust in God knowing that He is the giver of life and we prayed that He would be guiding the surgeon’s hands and holding her safely in His arms.

She survived the surgery!  But now back in critical care she looked more bionic than baby, there didn’t seem to be a square inch of her that wasn’t covered in wires or tubes. She was still on a ventilator and her chest was still open, the only thing covering her tiny beating broken heart was a piece of gauze.

The days were long as all we could do was sit by her bedside, waiting for her to stabilize.  We couldn’t hold her, only touch her hands and stroke her head, and pray for her to recover.    One nurse commented that we were coping so much better than other’s in our situation and we knew it because God was keeping our hearts focused on Him and His plan for our little Birdy.

Finally, almost two weeks after her surgery, Ava’s sternum was fully closed and things seemed to be headed in a good direction.  But God still had some challenges for our family to face.   The very next day, I took our daughter Sarah who was 5 at the time to a walk-in-clinic, only to be sent back to Sick Kids. It was there that she was diagnosed with Type 1 Diabetes.    This was a huge blow to Jason and I, and it was so hard to understand.  We were dealing with so much with Ava, and now we had another child with a life-threatening disease, a disease with a steep learning curve.   It was five days before Christmas and the stress on our family and our relationship was incredible and we didn’t know how we were going to cope.   It was hard to keep it together in front of the children, but thankfully all they were thinking about was Christmas.  To be honest I didn’t want anything to do with Christmas, there didn’t seem to be much to celebrate that year.  But once again, God showed us through our children’s joy on Christmas Day that we still had our family and His love and those things were worth celebrating.   Going forward we decided to divide and conquer.  Jason took on the diabetes education and care for Sarah and I concentrated on Ava.

We were finally able to take Ava home February 11th after 68 days in hospital.  We had battled feeding intolerance and heart issues for our whole hospital stay, but the staff was now confident we could care for her at home.   It wasn’t home for good and we knew that.  Ava would need another heart surgery when she was around 6 months old, but for now we were thrilled to move back home and have our family all together.

We loved having Ava home, but it wasn’t easy!    Her care was demanding, and her feeding and medication schedule kept me busy almost 24 hours a day.   The doctors had warned us that many babies with this defect don’t make it through these first months, so we tried to be diligent in her care and were in touch with her heath care providers daily.  Thankfully so many people pitched in to help to keep our home running smoothly and our church organized meals for us and my mom would often stay and Jason  was keeping good care of Sarah and the other kids.   Our family had adjusted well to this new crazy life of having Ava home, the kids helped out when they could and showered Ava with love.

Unfortunately in mid April, Ava was hospitalized in London with what turned out to be influenza B.   She was quite sick and even when she got home things just didn’t seem to be right, her breathing was laboured and she would get clammy.   All we could do was to hope and pray that  God would heal her little body so that she would be healthy enough to get her second surgery which was coming up.

On May 5th  Ava was well enough that we could take her to church to have her dedicated.  Our Pastor Norm prayed for her and we were so encouraged by our church family.     But five days later we were back at Sick Kids for a routine clinic visit and it was then that they said her heart function was decreasing and we would have to stay, they were going to admit her.

It was now May 10th, Jason’s 40th birthday , Ava was five months old and I couldn’t believe that she and I were now back in Toronto.   Jason and the kids were still in London so our family was separated once again, however we were confident that it would not be for long.  The doctors had been very positive and were saying that if Ava could have some testing done on her heart in the upcoming week, then they would plan on booking the surgery she needed for the week after.  I was envisioning a speedy recovery for Ava and being back at home that summer as a family reunited.

Jason came down to be with us for one of Ava’s major tests – a heart catheterization.  She would be put under and a camera inserted into a blood vessel in her thigh where it would travel to her heart so the doctors could do some diagnostic testing.   We were confident that the results would be fine, and were totally unprepared when the surgeons came back with bad news.   Ava’s one and only heart valve was terribly leaky.  It was the culprit behind her poor heart function and it was raising the pressure in her lungs, basically removing the possibility of surgery.   This was devastating not only for Ava’s sake, but I started to see my plans for returning home and reuniting our family start to crumble.  The medical team started tossing out the words ‘Heart Transplant’ and these words soon became our reality.

On June 11th, when Ava was 6 months old, she was officially listed to receive heart transplant.  But this wasn’t a cure, the medical team were very clear that receiving a heart transplant is like trading one heart disease for another.  And not only that, but waiting for a heart could take from 6 months to a year.  A very long time, especially considering Ava’s deteriorating condition.   Jason and I were doubtful that she had a year to wait.

Thankfully were we able to get another apartment at the Ronald MacDonald House fairly quickly, so now our family was at least all in the same city, but we didn’t know how long our stay in Toronto would be.  Would we be there weeks, months, or even a year as we waited for a heart?   Ava wasn’t doing well and a few times we came close to losing her and we just kept praying that a heart would come fast.    Those were very tough days as I walked to the hospital each morning, not sure how I was putting one foot in front of the other.   Facing each day was becoming more difficult, but I never walked alone.  Each day, God would remind me of a verse or a song, or someone would call or come to visit or leave a message on our blog that would encourage my heart.    Jason and I knew that God was carrying us through each day and He was being so faithful

The end of July came and Ava was getting worse.  She was sleeping most of the time and it was clear she was in heart failure.  She was puffy as her heart couldn’t move fluid around her body, and even though she was on an adult size dose of diuretics, she was gaining fluid every day.  She needed help to breathe so she was on CPAP which was helping take some of the load off of her heart,  and she was on the highest dose of the heart medication that they could give her.   We were constantly talking with the palliative care team about how to keep her comfortable and how to prepare our children if something happened to her.  We were praying desperately for a heart which was the only thing that could save her, but it hadn’t come yet and time was running out.

Finally, on August 15, 2013 we had to say good-bye to our precious Ava.  God choose to heal her not by sending her an earthly heart, but by taking her up to Him and giving her a brand new body that would never hurt again.   It was bittersweet because although it was so hard to say good-bye to daughter – it had been harder still to watch her suffer and we felt God’s peace in knowing that this had been His perfect plan for her all along.

It’s been over 18 months now since we said goodbye to our precious little Birdy.  Often I think about how life would be if we had her still and my heart aches for the loss, but deeper down, I know that my heart is healing.    We have no bitterness or anger and looking back all we can see is God’s faithfulness and goodness to us, and we look forward to the day when we will see our Ava again.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

This is Ava’s verse that we were given and it’s now on her gravestone.  We hold on to this verse knowing that even though Ava’s heart did fail,  God is now her reality and our strength.

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Today’s news…

So today Ava had her echocardiogram at 9:00 am, and at 12:00 pm I was told by our Nurse Practioner that Ava’s echo did not show any improvement in function.    Her echo was done by a tech, but finished off by a doctor who is number 2 in the country (or the world?) at reading function echo’s, so there is no room for doubt.

Ava is not getting her Glenn surgery.

Not much more was said today about the plan going forward other than we know that the unspoken outcome of all this is that Ava will likely need to be listed for heart transplant.  I was able to meet with our cardiologist and he said that sometimes children get listed for heart transplants because their function is bad, but then their function gets better and they get taken off the list.    I asked if there would be a concern that Ava might out-grow her shunt before a new heart came in, but he assured me that she has ways to go before they would be worried about that, so that’s good.   And it’s not like we are ever close to getting listed for a heart anyway,  all we know is that they will again discuss her next week at surgical rounds and then hopefully come to us with some plans going forward.

So it’s not the best news to end the week off with.  But Ava herself is doing great.. she slept most of the day because her echo today was a sedated one  and that really wiped her out.  But later in the day we were able to get on the floor and do her little excerise regime as laid out by her occupational therapist,  and she also breastfed twice today because she was so hungry from not eating for hours before her echo.   I always enjoy the time I spend with her and it makes my momma’s heart glad.

And I get to see my family tomorrow!  I’m taking the train home tomorrow and will help Jason pack the kids up to move here, so it  will be so wonderful to see the rest of the kids as I haven’t seen them in two weeks – it feels like forever.

Thanks again for all your prayers and encouragement.  It feels like this journey has just turned the corner and will be taking us down a new road.   I guess now we just wait and see what God has planned for us and our little Ava.

Next Steps

Yesterday was such an emotional and exhausting day, and today has been such a busy day, that I just haven’t had time to blog.  But now my mom is going to make me a cup of tea and I will gird up my loins and write write write.

So yesterday… the big reveal.    Jason drove up to Toronto Monday night so that we could be together to talk to the doctors Tuesday morning, and it was wonderful to have him here.   We waited impatiently for rounds so we would hear about their plans for Ava, but when the rounds finally came in, the ward cardiologist said that he would come back after rounds to talk to us… around noon…. AUGG!!!

But since we are resourceful, we went in search of Ava’s cardiologist,   who we had heard had come looking for us first thing before we got there.       Not only were we looking for to get some information more quickly  (aren’t we awful?)  we really trust and respect him, and we knew that if it wasn’t pleasant news, we would much rather hear it from him.

We were able to track him down and thankfully he had a minute to talk to us.   He right away said that after looking at her cath results, he could see clearly for himself that the function in her right ventricle was decreased and that her tricuspid valve was quite leaky like we had already been told.   And unfortunately during the surgical rounds that morning, Ava’s surgeon said he didn’t feel that he could go in and do a valve repair unless it was part of the Glenn surgery.  But that is the problem, Ava can’t get the Glenn because the pressures in her lungs are to high, probably due to the valve leaking!     And the valve is leaking badly partly because there is too much volume in her heart.

So in a nut-shell, Ava can’t get the Glenn surgery because she needs the Glenn.   The Glenn would reduce the volume in her heart and it’s work-load and probably help out the valve too, so it’s a huge predicament.     And unfortunately there is another problem,  the left side of Ava’s heart – her left ventricle –  is still big and because it’s not functioning, it’s acting like a big boat anchor and is dragging down the function of the right.  And unfortunately, I don’t think it’s something that can ever really be remedied.

So the plan.

The plan is to keep Ava on her heart medication drug that she is currently on –  milrinone – and then on Friday she will get another echocardiogram.  If the milrinone has helped at all by improving her heart function, they will think about doing another catheterization.    And if the cath showed any improvement, they would reconsider doing the Glenn surgery.

But if Ava’s heart function hasn’t improved by Friday…  well then we start thinking about having Ava listed for a heart transplant.

A heart transplant.

Never ever would I have thought that that card might have to be played this early in Ava’s life.  And I’ll be brutally honest, baby hearts are NOT easy to come by and if by chance Ava needs to be listed and we decide to go down that road, we could be waiting an awfully long time.     And keeping a baby who needs a heart healthy, until that new heart arrives,  can be a huge challenge.

And it just seems too much to think about it, and it made yesterday a very tearful and heavy day.   Not that we haven’t given up hope for this week’s echo to show some good news.  But it seems that we have had so much bad news in the Ava department that hope for saving her own heart does seem to be ebbing away.

Oh Lord, please grant us the strength just to get through this day – and this day alone, because the future is WAY too daunting.

This verse keeps coming to mind…

Matthew 6:34   “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

You can say that again.  But that is exactly the lesson that God started teaching us back when Ava was born and then when Sarah got diagnosed with diabetes.    That God is only granting us the grace to get through today – as we try to live just one day at a time.   And I won’t lie, it’s not easy… and it can be down-right painful at times.    But through it all God is already showing us He cares for us by giving us what we need.   Like how I got an amazing sleep last night and woke up with my soul refreshed, and then we found out today that we got an apartment at the Ronald MacDonald house so Jason and the kids can join me here, praise God!

So the next steps are exactly that…. steps… that will we take one day at time,  thankfully with all your support and your prayers for our sweet little Ava, our Birdy.

Thank you and Amen.

Still looking good!

Our little Ava is still looking good!    I took her to the cardiology clinic here in London on Friday and after the Nurse practioner and cardiologist looked at Ava on the outside and the echocardiogram showed them what they looked at on the inside, they agreed that she looked good, hurrah!  It’s always good news to hear.

And Jay and I certainly have no concerns with her right now…  even though she does have a cold, poor baby.  I didn’t really think that we would make it through all of March without getting something, especially considering our weather has not been all that it could be – and the other kids keep bringing things home.   Thankfully Ava seems to be tolerating this cold OK.   It’s all upper respiratory and even though it makes her cough and gag and sometime makes her vomit up her milk, she’s still growing and still gaining which is awesome.

And the count-down to her catheterization is on… I’m not sure how we are feeling about that so we can talk about that later.

Talking about Ava looking good, my mom had some fun last week and after giving Ava a bath thought she would give her a new hair-do…

Avahair

Oh our little Birdy – you do have an awful lot of hair!!!   And did you notice that her jammies have birdies on them?  I love it.

And we are so thankful that God is being so gracious to us and keeping her well.    I know that He is holding Ava’s little heart in his hands and that we can keep trusting Him every day.   So we praise Him alone that Ava is still looking good!

Oh good grief…

We are home, hurrah!  But talk about an emotional roller-coaster.   Since Friday, when our Nurse practioner told us to be prepared to have Ava be admitted back into Sick Kids, I was feeling down and sad about having to put Ava back in hospital,   but then by Sunday I became resigned and Jason and I were actually looking forward to getting some sleep. 🙂   And since it’s March break, we thought the best thing would be to take the kids with us so we could be together at the Ronald MacDonald House, so we packed everything up Monday, ready for a long stay in Toronto.

But then,  after the nurse and the dr looked Ava over yesterday, they pronounced her fit as a fiddle and said we could go home!!!   Our reaction was a mix of excitement knowing Ava was OK and being able to go home, but then also  frustration that we had gone through all the packing up for nothing.  And the biggest kicker is that I was so tired before, but then I got to add-on packing and un-packing to all of that… good grief.

However, we are so incredibly thankful that after Toronto reviewed all the echocardiogram that Ava has had since just before we were discharged,  2 from Toronto and 2 from London, they didn’t think they saw much decrease in heart function over the past month, which is such an answer to prayer.   And there is a lesson to be learned here… never again will I go down to clinic with more than an over-night bag!!!   And if we are admitted at a later time, well we can always drive back and get what we need.

And after talking with the dietician yesterday I think we have a plan for me to get more sleep.   Right now, Ava only gets breast milk through her ng tube every 3 hours, which although she is slowly gaining on, but she’s only in the 3rd percentile, poor little turkey.    So she figured out that if we add 1 tsp of formula to my milk every feed, Ava will get enough calories that I could skip the 3 am feed, hallelujah!  So the plan is to increase her relfux meds for a few days,  increase the amount I’m feeding her and so in about a week I should be ready to add the formula.  So maybe sleep will be coming my way very soon!   And although none of my other kids have needed formula, I have to look at Ava in a completely different light, certainly because her story is quite a bit different from theirs!

As well, up until now I have been trying to get Ava to breastfeed with very little success.  And unfortunately because I had such wonderful experiences nursing my other babies, when Ava cries at the breast, or gags and won’t nurse, I take it to heart and it hurts.  So now I’m really hoping to teach Ava to take a bottle, realizing that between the ng tube and the bottle, the bottle is the lesser of 2 evils.    My biggest concern right now is that Ava won’t ever take anything orally, and I don’t want to miss a window and have her tube fed for the rest of her life.   Even teaching her to take a bottle is going to be a long and hard road –  it already seems that she is afraid to suck – but I’m going to enlist all the help we can get and maybe if she gets comfortable sucking again, it will open the door to more breastfeeding, who knows.

Oh – and please pray for Aleeda… the little girl with Ava’s same heart condition who is waiting for a heart… I did a post about her here.   I saw her yesterday and unfortunately she’s not doing that well, but we know she is in God’s hands and He is trustworthy whatever is plan for her is.

So once again we are thankful for everyone’s prayers and support – and we know that God is definitely answering our prayers and we will just continue on this journey, one step at a time!

No wiggle room….

I am quite bleary eyed and tired, but I want to catch everyone up so I will try to do my best to make this blog post coherent and spell things correctly, but I’m not making any promises. 🙂

So to make a long story short, the echo we had yesterday in London showed that Ava’s heart function is decreasing, which is sad and not a good thing at all.   They compared yesterday’s echo with the one we had done Feb 20 when we were in emerg and there is a noticeable difference.   Now, we still don’t know if there is decreased function from the echo we had at Sick Kids last week Tuesday, as the pictures have been sent but not analyzed yet, but any decrease in function is  just plain concerning.

And the trouble is that they just don’t know why this is happening.   Some baby’s do so well with their little single ventricle hearts, and some don’t and it’s not something they’ve been able to figure out.  I really wish they could.

But through all this our London cardiologist was very kind and asked me how I thought Ava was.  I personally am not super worried about Ava, but she is having more frequent  spells where she gets clammy and I’m also noticing that her breathing is faster more often and those things do have me concerned.  They don’t like the clammy spells either so  yesterday they hooked her up to a Holter monitor that recorded the electrical activity of the heart for 24 hours, to see if they can match up any heart irregularities with the clammy spells that she has.   Perhaps there is a simple arrhythmia problem which can fixed, who knows.

And since our cardiologist also was talking back and forth with Sick Kids yesterday, we got a call last night from Paula, our Nurse practitioner there, and she said that they wanted to see us on Tuesday in Toronto, and to pack our bags and be prepared to be admitted and stay for quite a while…. and I think this time they might mean it.

As Paula explained, Ava just doesn’t have any wiggle-room – meaning she just doesn’t have that reserve that we all have that allows us to fight things off, or deal with pain or stress.     Ava is just not that strong, even though she looks fantastic.     That’s what our cardiologist told the Dr at Sick Kids, that Ava looks great clinically, but her echo is saying otherwise.   Ava’s good healthy looks are apparently misleading.

So I’m packing my bags with a heavy heart.   I’m still praying that we won’t have to stay, but it seems the writing is on the wall this time.  But like Jason says,  it’s not easy having her home either – although we love being here together as a family – Ava is exhausting to care for and neither of us are getting much sleep.  So if the hospital is the best place for Ava, then it’s where she needs to be and maybe it will be better for us too in the long run.

So I’ll just pack and trust, and hope that they can figure Ava out and that we can get that wiggle room back!  Like always, we’ll keep you posted!

Home sweet sweet home..

Oh it’s so good to be home!

Yesterday Jason and I went back to Toronto to Sick Kids for Ava’s appointment at the Single Ventricle Clinic.   It was a bit of a heavy trip I had been told the night before to come prepared to be admitted.   Even though a small part of me wouldn’t mind being back at the hospital so the nurses could care for Ava all night and I could sleep (oh sleep!!!) , I started realizing as we were driving there just how much I was enjoying being home again.    Maybe because I’m slowly starting to feel like a mom to my other kids again and it’s been so great sleeping in my own bed.   Then there is how much I’m enjoying reconnecting with friends and family and I’ve even been out shopping once in the past two weeks.   Just once – but still!   So once again, I had to surrender everything to God, tell Him once again that I trusted Him even though I was so sad at the thought of going back and went and packed my bags.

The reason they had talked about having to admit Ava was her lack of weight gain,  which has always been slow.   And so because of that had also mentioned the possibility that she might need a g-tube so we could start doing continuous feeds to help her gain weight.     However, even just looking at Ava yesterday both Jason and I thought she looked so great that we were sure that they wouldn’t keep her.  And sure enough when our nurse practioner saw her, she thought she looked great too!    Especially the little bit of chub that Ava has put on her thighs,  there is something about a little bit of chub on a baby that just makes my heart melt and nurse practitioners of single-ventricle baby’s very happy.

Anyway, Ava had the full work-over at the clinic,   blood work, an echocardiogram and a thorough check up by our nurse practioner and it turns out that Ava is actually gaining at a rate of about 25 grams a day!    Which is not as much as they would like, but since she also grew 2 cm since she was discharged, everyone was happy with her progress and there was no talk of admitting her.

Now we still have put in a requisition for a g-tube.   Just because Ava’s ng tube probably isn’t going away anytime soon and a g-tube would probably be safer and better in the long run.  The good things is that as an out-patient it will take 5-6 months to get it and the hope is that by that time she won’t need it anymore and we can just say no.   I hope that in 6 months she will be able to take all of her food orally, and so we can say no, at least that  is my dream and my prayer!

And then there is our little Birdy’s heart.   Unfortunately the echo we did yesterday, compared to the one we did just before we left the hospital, showed that her heart’s function is decreasing, which isn’t good.    It’s just that with her current configeration her right ventricle is over-worked as it has to pump blood to two places,  her lungs as well as her body.   And like I’ve mentioned before,  your right ventricle is just not designed to pump to your entire body,  it’s smaller than the left side as its meant to pump blood solely to the lungs.   But in kids like Ava with hypo-plastic left heart – where the left ventricle is non-funtioning  – they have no choice but to try to make the right side do it all.

So they are keeping a close eye on her heart, and hopefully if the function doesn’t decrease more,  they will seriously look at doing her next surgery sooner than later, as the next surgery will take some of the pressure off her heart.    She is booked for another echocardiogram in London next week and then in a few weeks we will be back to Toronto where they will do a catheterization on her heart to see if she is indeed ready for the next step.    Now, if her heart function decreases and she’s not ready for the next surgery, she will be admitted and be put on some heart medication to help her function and then we wait.   Which is not the route we want to go, so please pray that her function doesn’t decrease anymore, we need her heart to stay strong.

So.   As the cardiologist in London said to me last week, nothing with these single ventricle baby’s is easy or simple – and we can agree with that.  But we just take things day-by-day.  We still pray for strength everyday, and still just enjoy Ava day by day.  And it isn’t hard to enjoy her… she is such a sweet baby whois us usually awake and happpy, or sleeping, which she does quite a bit of the time.

Ava

And as for coming home last night in the dark, all I can say is that I’m thankful that Jason is such a good driver and could navigate the snow covered roads and the lack of visibilty with far more courage and tenacity than I ever could!  And once again God was faithful and heard our prayers and kept us safe.

So now as I prepare for another night where I get to stay up and enjoy it more than I should,  I can still say thankfully – I’m just happy to be doing it here at home, sweet home!

Where things are at

Monday Jason and I spent a long day in Toronto.  It was a very long and full day,  but thankfully there wasn’t much waiting time between appointments so the day itself seem to fly by…  except for the drive home.    We hit rain and traffic and together proved a very long and frustrating combination, but we made it home safely.

We left here at 6:15 am to make it to Sick Kids for our first appointment at 9:30 and actually made it there nice and early.   I think Remembrance Day day had something to do with that as there seemed to be hardly any traffic downtown.   All those bankers and Government offices taking the day off, lucky them.    But it was nice to have the streets clear for a change.

So just after we registered for our echocardiogram – our first appointment of the day – our contact there, Nathalie,   asked if I would mind having an MRI before the echocardiogram.   She had talked to me before about having one for research purposes, but the timing just hadn’t worked out.   So since there was an opening right then I said OK.

And it is a for a good cause.   They are doing research right now on baby’s with Congenital heart defects to see how these baby’s are managing their blood flow  in utero and the only way to really see that is with an MRI.    The information they will glean from it won’t help our baby specifically, but just knowing that the information might help other baby’s down the road makes it worth it.

I’ve never had an MRI before, but as I’m one tired momma I was just hoping it would be a place where I could have a nap.  Those of you who have had one just thought, “ha ha, yeah right”.   But I was hopeful and they did make me very comfortable on my side with pillows and foam until I felt quite tucked in.  But what I did not know that those crazy contraptions make the weirdest  loudest noises one has ever heard.   But I just relaxed, prayed that God would keep me still and let me sleep,  and truthfully I did drift in and out in spite of the noise, so I actually felt pretty rested when I was done.  I also felt rather tousled and sported a great bed-head for the rest of the day, but now I can say I’ve done my part for research.  And the Cardiologist who was over-seeing the MRI showed me some cool pics of the baby after, so that was a neat bonus.

Next it was the echocardiogram and that turned into a bit of an adventure too because Birdy is very comfortable in a position that is NOT helpful for getting clear pictures of her heart.  So our Cardiologist fellow (cardiologist in training) had to call in an experienced tech to help who then in turn just handed it over to Dr. Jaeggi our Cardiologist himself so he could try to get some clear pictures.

The baby’s heart hasn’t improved, but that was to be expected.  He doesn’t think her aortic arch is constricted, which is good, but they will get a better view in three weeks when she is born.  So thankfully the right side of her heart still looks good and she is still a good candidate for surgery afterwards.  Awesome.

So then we met a Dr and nurse practitioner from the newly formed ‘Single Ventricle’ team that will be caring for Birdy after she is born.  We are definitely in good hands!  But they did stress again just how serious of a heart condition she has, but I was comforted in knowing that they have no expectations and just will just track with her at her own pace, even when it comes to things like nursing.   But talking to them was a huge reality check – things are not going to be easy at all.    She is going to have a long recovery time and they basically told us we wouldn’t be home for Christmas.  I already knew that, but it’s not nice to hear it.   It all seems so daunting, but I’m so thankful for a God that keeps renewing my strength when my strength is gone.

And then it was over to the High Risk Pregnancy clinic to meet our OB and see what he had to say.  And the good news is that Birdy is now 6 lbs 7 ounces!  Woo hoo.    She is going to be a good size baby like her siblings, I wouldn’t be surprised if she was over 8 lbs even at two weeks early.  And our OB, Dr. Ryan is wonderful.  He is the man who did the intervention on Birdy’s heart back in August and is quite the miracle worker over at Mt. Sinai with unborn babies.   And since I know that when I’m induced, I’ll be seeing whatever OB is on call that day,  I mentioned to him that I might not see him again, but he said, “You’ll see me again”… and then proceeded to change our induction date to the 3rd instead of the 4th.    Jason and I think he did that so that he will be there for the birth, which would be wonderful.

So now we don’t go back to Toronto until December 2nd where we will stay the night before heading to the hospital in the morning… Lord willing.  We will call on the Sunday to make sure the induction is still a go, and if it is, that means it’s less than 3 weeks away… AUGGGG!!!

I still am having a hard time wrapping my heart around the fact that I have to leave my other kids.   But my brain (and other people)  assure that the kids will be fine.  They are resilient  they will be well cared for and loved,  and they can come and visit, and who knows, maybe even I can come home from time to time.    It’s just my heart that still cries whenever I think of leaving my precious baby’s.  Oh this is not going to be easy.

So please pray for us, we have so many hurdles to jump through, still so much to get prepared for in the next three weeks and pray that even through this time, we can still Glorify God who has a plan for us and knows exactly what He is doing.

So that is where things are at.