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.

Advertisements

So thankful

Well I’m sitting here thankful for quite a few things.  First off, for all the support and love that people have sent our way through emails and comments on our blogs the last couple of days… you guys are making me weep (in good ways) – and reminding us over and over that God has not forgotten about us, He’s still laying Ava and our family on your hearts – and even your little one’s hearts –  and so even today when I don’t seem to have much hope in hearing good news tomorrow, we know that God still cares and is being so faithful.

And the verses that you guys are sending!!!  Love them!   Here is one that a friend sent… with her note

Romans 15: 13 May the God who gives hope fill you with great joy.
                               May you have perfect peace as you trust in him.
May the power of the Holy Spirit fill you with hope.
(this is from the NIV bible for young readers…so simple isn’t it?)

It is simple, so simple, but exactly right and just what we need right now,  joy, perfect peace and hope…. all free gifts of God to those who believe in Him and call on His name.  We are so blessed by God even in this crazy situation.

So yes, the situation.   Ava’s echo tomorrow is going to be a sedated echo, so she will be NPO (nothing passes orally) starting from 4:00 am to get her ready for sedation for 9:00.  It is going to be a very thorough echo, they are going to leave no blood vessel unscanned as they seek to discern whether or not Ava’s heart function has improved at all.

As the doctor on rounds said today, if her heart function looks better, we will redo the cath.  If it’s not better, or if it is worse then….  He just stopped talking.  He didn’t need to continue, we both knew what he meant.  It means we need to think about transplant.

But that is still tomorrow’s worries, so I won’t borrow trouble.

I am thankful that my mom could come down and spend a night with me and spend time with Ava.   I’m grateful that the Ronald MacDonald House got us an apartment and that my mom could help me move in and that Jason and the kids will join me shortly.   And I’m grateful that we have such good care at Sick Kids and that Ava’s cardiologists, both in London and Toronto are very caring and compassionate.

And I’m thankful that Ava is doing so well and had a good day and that even though we are in room with sick children we still can laugh and joke with the other moms and nurses and have good days.

And I’m grateful that Jason is doing an amazing job at home with the kids and that friends and family are helping so he doesn’t have to do it all on his own.

But please please, keep praying!  Your prayers are strengthening our faith and God’s power is evident, and whatever comes tomorrow, we know that God will see us through.

Amen!!

Cath Today

Please pray for Ava as she is waiting for her catheterization!    She hasn’t taken anything by mouth since 4 am to prepare for it, so she is hungry, but they did put an IV in for fluids and she is sound asleep right now.     Hopefully they will come get her before noon – but hopefully not before daddy arrives.  🙂

For the cath they will go into a vein in her groin and send a long flexible rubber tube into her heart to do some testing to see if she is indeed ready for her next surgery.   She will sedated and of course there are always risks involved,  but I got down on my knees this morning and prayed for her and God has give me peace which I’m so thankful for.   Ava is His and I know she is in His hands.

Ava’s cardiologist from Sick Kids came by yesterday and in his opinion this cath is being done to close to her diagnosis of influenza back in April.    But he said if things don’t look favourable, not to panic,  but we would just do another cath again in a few weeks.   I have no idea if we will wait at home or here.

And in a surprise turn of events, our Cardiologist from London in at Sick Kids today, so he came by to see us as well which was very kind.   I once again am thankful for such an amazing team of caring people who Ava has around her.

So please pray that God will guide the Dr’s hands and that they will all be astounded at how well Ava’s heart is.    We would love to hear some good results so we can move forward, but on the other hand we don’t know what God’s plans for Ava are and we know that not-so-good news is also a possibility, but we will just take that as it comes.

Here’s a verse for Ava today..

Psalm 139:13-14, For you formed my inward parts; you knitted me together in my mother’s womb.   I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.

Thank you for praying and I’ll keep you posted!

No plans yet…

Well I wrote a big post on my phone last night but couldn’t figured out how to publish it, which turns out is a good thing because things have changed once again today – as they have a habit of doing – so now I will write a new post here on the computer in the library.  Ava is having a nice snooze so I could run out for a bit which is always nice.

So, as of yesterday it seemed that the general consensus was that Ava was basically here in the hospital now until her next surgery.  The cardiologist was going to try to get her a new cath date earlier than the one that was going to be booked for the first of June and then surgery would get booked and we would just stay in the hospital until it could all get done.     Which in light of Ava’s decreased heart function and increased valve leaking seemed to be a good idea, especially as she has been on continuous feeds since we got here and increased lasix (diuretics).

However,  it seems the cardiologist is having a bit of a hard time getting everyone on board with this plan,  especially since Ava still does have a cough and it’s still not 4 weeks since she had influenza.    The cath people will only do an earlier cath if the surgeon will do surgery right away.  But we still don’t know if the surgeon is comfortable doing surgery since Ava still isn’t 100% and after you have an illness like influenza, it can make recovery more difficult.

So if that is the case, and we have to wait a week or two anyway, we might as well go home!  Which would be wonderful in one way, but scary in another, because now we know Ava is even more fragile then she was before and what if she gets sick again?   But there are risks to being here as well so who’s to say which is the better choice.

But in order to qualify for going home, Ava needs to be back on bolus feeds (being fed every three hours like normal) and her lasix need to drop down again to twice a day.   It will be interesting to see if she tolerates these things, because if she doesn’t we aren’t going home either.

So that is why I can say there are no plans.  There are too many variables and too many things need to be sorted out and figured out.

Please pray that this would all be happening according to God’s timing and that whatever is decided is for the best.   Ava and I are fine, it’s been nice seeing everyone here again and I’m meeting some friends today so today is going to be a good day.  We aren’t suffering at all, except we are missing our family like crazy which is a given of course.

But we will just take it one day at a time, and just chill and wait for someone to tell us what the plan is. 🙂

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!

There and back

So yesterday we made the trek to Toronto again.  Except this time it was Ava and I and Jason’s sister Lija (Lija – the cool Latvian way to spell ‘Leah’ ) and we left Jason and the kids at home.  It worked out better that way so Jason could be in town for Sarah.  Plus, Jason is the morning king.  He wakes up at 6 am every day to give Ava her 6:00 am feed, he then gets the kids out of bed,  feeds them, packs their lunches and walks them to the school bus.  Every day.  He rocks.

Maybe someday I will venture to Toronto alone with Ava, but at this point I’m too tired to drive myself, plus I  enjoy the company and the help of having another person there with me.   So thank you Lija for taking the time off of work and taking us!  And we had a great day together and Lija was very good about me dragging her all over the hospital and talking to what seemed like a million people, she is a very patient person.

And the good news is that the Toronto team was very happy with Ava.  Every time they see her in clinic they remark that they’ve never seen her looking so good and it makes me so happy and grateful to God for His goodness.  And I’m happy to report she’s gaining weight and growing, which is fabulous.  She’s only in the 3rd percentile for weight, but for her height she right around the 15th percentile.   It’s a little surprising that she is a good height considering she has Turner’s, but we’ll gladly take it!    And her echo looked good as well.  It’s funny though because they couldn’t get a good look at Ava’s shunt during the echo, and the tech even had a doctor come and try…  and I came very close to offering to show them how I’ve seen other tech’s do it, but I refrained.   I’m positive I could do it, but if I couldn’t I would feel very silly. 🙂

Now, the cardiologist that is part of the Single Ventricle Team we saw yesterday was a bit pessimistic.   He didn’t think Ava’s heart function had gotten worse, but he mentioned that it hadn’t gotten better either.  I was surprised that they hoped it would get better and asked him if they really expected that,  and he just said that a few kid’s hearts do.   He also threw out the word ‘transplant’ which I found a bit strange as we are nowhere near having to think about a heart transplant for Ava at this point.   I know that for single-ventricle kids, a transplant is often the reality, but according to the Children’s hospital of Philadelphia, there are thousands of people in the 20’s and 30’s living with single ventricle hearts, which is amazing news, although even then they often have to deal with other health problems.   Thankfully Ava’s cardiologist –   Dr. Jaeggi – also came by yesterday and he was much more optimistic and pleased her with echo results, which was reassuring.

And so walking away from that appointment I felt that over-all,  things were positive.  And we don’t have to go back to Toronto until April 23 for Ava’s pre-cath appointment.  Her heart catheterization is on the 25th of April and the dr did say that if the catheterization went well and they feel that the pressures in Ava’s heart are low enough,  and she is strong enough to with-stand surgery, that booking her next surgery in May might be an option.   That would be amazing!  And they also said that no matter what happens with Ava’s heart, she will be so much better off after the Glenn Surgery  (You can read more about all three of the surgery’s here) and it will just be wonderful to have it done before summer.

So that was our Toronto trip yesterday.  We left at 6:00 am and returned at 6:40 at night, a long day, but a good day and it’s so good to know we don’t have it do it again for a whole month.  And I’m always greatful when we can go there, and then turn around and come back.

Amen. 🙂