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.

His eye is on the sparrow…

Today is another waiting day.  We really thought that today would be the day they would try to close Ava’s chest… but it didn’t happen.   Alot of that had to do with her surgeon,  he had 2 surgeries today and didn’t want to squeeze in closing Ava’s chest, just in case he wouldn’t be able to intervene if necessary,  so it’s planned for tomorrow… so please pray!

And unfortunately it was a bit of a distressing day, mostly because Ava seemed really irritable  and I couldn’t even touch her without startling her and then she would look like she wanted to cry… and of course she can’t really cry because of her ventilator and then that distresses me.   Oh dear.

To make matters worse, last night they started to see some evidence of chylothorax… which basically means that during surgery Ava’s thorax may have been nicked, and now chyle – or fat is escaping into her chest cavity.  Sigh.  Right now just a tiny bit is chyle is leaking in, so they haven’t done anything about it yet.  But if it starts to pool, they will pull her off of the breast milk they are feeding her through her nasal gastric feeding tube, and have to start giving her a fat-free formula for 6-8 weeks.  It’s upsetting, but I just have to trust that God will intervene, heal her quick, or just give me peace about this situation.  And I don’t think I had mentioned that they have been feeding her my expressed milk through her NG tube, and that is very good thing, and I love feeling like I’m doing at least something to help her.   And eventually I would love to nurse her, but after meeting with the lactation consultant and a nurse practitioner today, I’m realizing that even though it is possible, it just might not happen.  Again, something I just have to let go and leave in God’s hands.

Oh – and to just make matters a bit more complicated for us, our little Sarah (who is 5) has been drinking gallons and gallons of water in the past few weeks and it had made us a bit concerned – especially  as the first thing that comes to mind is diabetes… AUGG!!!   So as soon as we get her health card here, we will take her to a walk-in-clinic.   We need to rule it out for peace of mind.  We also need to lay it at the foot of the cross and just know that God won’t give us more than we can handle right now… please Lord, I don’t think I could handle this as well as Ava!   So please pray for Sarah, that she won’t have diabetes, and that this is nothing more than a crazy water-loving phase.

But there is good news.  Jason and I have been reading John Piper’s Advent devotional, and today it was about missions. But I found it very applicable to us.  Here’s an excerpt…

In the mid-16th century Francis Xavier (1506–1552), a Catholic missionary, wrote to Father Perez of Malacca (today part of Indonesia) about the perils of his mission to China. He said,

The danger of all dangers would be to lose trust and
confidence in the mercy of God… To distrust him would
be a far more terrible thing than any physical evil which
all the enemies of God put together could inflict on us, for
without God’s permission neither the devils nor their
human ministers could hinder us in the slightest degree

And it’s true, we can’t lose our trust and confidence in God.  Not through the terrible things, nor the waiting, nor the setbacks.  And I’m so thankful to my friend Christa who made this reminder for me which now hangs over Birdy’s bed…

birdy picture

And I love remembering that His eye is on our little Birdy, and He loves her more than me, and I don’t have to fear for her or be distressed.   Thank you Christa, for the reminder.  And here’s the verse where that is taken from… Matthew 10:29-30…

 29 Are not two sparrows sold for a penny?Yet not one of them will fall to the ground outside your Father’s care. 30 And even the very hairs of your head are all numbered. 31 So don’t be afraid; you are worth more than many sparrows.

This is not an easy road and believe me, I’m not stoic.  I’ve shed gallons of tears, but I kept being led back to the grace and mercy of God in our lives, and I’m so thankful that His eye is on the sparrow, or in my case, our little Birdy Ava Samantha Grace.

Amen.

Monday morning…

One of the crazy things about having a child in the hospital is that every day is the same.  You wake up, shower, get dressed,  have breakfast,    make your way to the hospital and in our case, sit at the foot of your child’s bed and remain there for most of the day.

What day is it today?  Oh right, Monday.   So today Birdy is doing good, she has lost a lot of fluid which is good, she was so puffy after the surgery she looked like a little sumo wrestler.   They were helping her get rid of the fluid with medication, but now they have stopped those meds and she is still peeing well so that’s wonderful.

The surgeon was on the rounds today and he would like her off her blood pressure medications before he closes her chest up,  so I don’t know how long that is going to be because they tried to take her off those meds yesterday and she didn’t do so well.

See it’s all one huge balancing act.   She is attached to a monitor that shows her heart rate and blood pressure.  These both need to stay in an ideal range, but all the medications she is on either work for against her blood pressure.   Then you add-on things like the ventilator and whether her blood volume is low from them drawing blood from her so often, and so it’s a just a huge numbers game of checks and balances while trying to lower her off of these meds.  I have to give the nurses a huge amount of credit, it’s not an easy job.  Especially when her blood pressure dips and they have to figure out what changed and how to get it back up again.

So we just need to pray, pray that they could continue weaning her off these meds with good results.   As well, until her chest is closed and some of her tubes and catheter and ventilator are removed, she’s a sitting duck for infection… so please pray that she would be protected from infection so we could continue this healing process.

And it is a process and we have to be very patient and that’s what we are trying to be, very patient on this Monday morning.

Thanks again for your support and prayers!

So happy to share…

Some sneak peeks – 3D pics of our little Birdy!

These are from the MRI that I had and I just can’t get over them and how familiar she looks.   I think that she might even be sucking her thumb!

She looks like Erik from the profile…  then she looks like Sophia when she is sucking her thumb, and her long torso and feet remind me of William, and seeing her curled up reminds me of Sarah.

It makes me that much more anxious and excited to meet her –  by this time next week she might be here,  which is something to look forward too.

God bless you my little Birdy!

She’s growing!

Just a quick little update to say that Birdy is growing like she should and now weights over 4 lbs!   Praise the Lord!   Not that I was worried she wasn’t growing, because I’m certainly growing…. but I think the fact that she only has half of a working heart, plus the fact she has Turner’s combined, can make growth an issue.

But the ultra-sound that we had when we went to see the dr on Friday showed that she is very healthy otherwise and is in the 50th percentile for her size, and I’m so happy.

Just wanted everyone to know.

We love you our little Birdy!