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!

A story of God’s faithfulness…

Our pastor Norm sent this video clip to us today.  He found it and then thought of us, but this family has had so much more to bear.    Their oldest daughter is 6 and is living with Turner’s Syndrome with many health issues, and then they have two healthy daughters and then their 4th daughter Ava just passed away this year at the age of one.

And the video is sad, and it made me cry.  But what makes it worth is seeing is how a family that should be coming apart at the seams is instead talking about how good God is and how His strength is what is making the difference.

And it’s hard to watch the difficult things that people have to go through… but thankfully when those people are trusting God it’s not just a sad story anymore, it’s transformed into an amazing reminder of God’s faithfulness.

It’s definitely worth watching!

It’s heavy…

It’s a little strange, I feel like I have two lives.  One life is  here with my four healthy normal children, taking pictures of their first day of school, playing keep-away with them in the pool and reading them bedtime stories.

And my other life is lived in hospitals, getting echocardiogram and ultra-sounds and talking with Dr’s  with lots of tears and concern surrounding our unborn baby.

Two lives, one blog,  so I apologize for the mish-mash of light stuff and heavy stuff to be found here, and just be prepared that this post is on the heavy side (and long side too).

So backing up to August 24th when they went in and opened up the baby’s aortic valve, they did an amniocentesis at the same time.  I’ve never had one before, and have never wanted one.  But I see now that the dr’s were definitely looking to see if there was a reason why this baby might have a heart condition.      Syndromes like DiGeorge syndrome or Down’s syndrome both could present with heart problems, although they were pretty confident my baby didn’t have Down’s or DiGeorge based on ultra-sound findings.

But as it turns out, my baby does have a syndrome,  Turner Syndrome.    My baby has a genetic problem.   Can you believe it?  I certainly had a hard time hearing that.   It was another huge shocker.  Never in a million years did I think that this could happen, but it did.   And her aortic stenosis can now be attributed to it.

So what is Turner syndrome?   Well Turner syndrome happens at the very beginning when cells start to divide and a piece of genetic information is dropped or garbled from the mix.  So where most women have two X chromosomes, our baby only has one X chromosome in some of her genes, and in the other genes,  one normal X chromosome and an isochromosome (a malformed X chromosome) in the others.

This loss of an X can lead to quite a few issues, but with a broad range of symptoms,  and they never really know how severe or mild  the disease will be until the baby is born and starts growing and these issues present themselves.  The most common characteristic of Turner’s is a lack of growth which results in short stature, as well as a lack of fertility.   It’s not inherited, any mother of any race or age can have a baby girl with Turner’s and there is a 1 out of 2500 chance that it will happen.  (There is a 1 out of 750 chance your child could have Down’s Syndrome.)

It’s one of those things that no parent ever wants to hear.  To find out your child will deal with something for the rest of their life that they will never be cured from is heart-breaking, even though the difficulties Turner’s presents typically can be over-come by modern medicine.  Still, it’s another challenge for our daughter to face coupled with her heart issue and we are very sad for her.

And speaking of the baby’s heart issues, we drove to Toronto again yesterday to have another echocardiogram done and meet with the cardiologist and see how baby’s heart was progressing.   I wasn’t planning on looking at the screen while they were doing the scan, but I did.   And when I saw that her left ventricle was still large, still not functioning well and that it wasn’t filled with oxygen rich red blood like it should be, but just a little blue blood trickling in, I started to cry.  I knew then that God had chosen not to heal her at this time and my heart started to really hurt.

And the cardiologist explained after the echo was done that the aortic valve has closed a little like they hoped it would, but still the pressure in her left ventricle is still so high and the function is still so low, it looks as though the left ventricle is burned out and it’s just a matter of time before the left side of her heart is lost…  and would go hypoplastic and she will end up with Hypoplastic Left Heart Syndrome.

But that’s speaking in medical terms.  We fully believe that there is still room for God to heal her, and we are still praying for that, but right now  it feels like God’s plans for our daughter aren’t lining up with my plans and I’m grieving.

I read recently that grief is an emotion designed by God to allow us to mourn things that we have to let go of.  Right now I’m grieving now the fact that if things don’t change, I won’t be nursing and cuddling and showing off a new baby, but watching her in a hospital room recovering from open heart surgery.   And what does that look like?   What does leaving my 4 young children for a long time and staying in a large city away from home for weeks and weeks look like?   Will Jason be able to join me?  The the kids cope OK?

I don’t know these things or have any answers and I don’t even know if before then or during that time God will call my daughter to come home back to Him.  But what I do know is that God has promised never to leave us or forsake us… and in the little things like providing baby sitters and parking spots and friends to cry with,  He has been there for us every step of this journey so far.   Here’s another verse I cling too…

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.  Deuteronomy 31:8

Do not fear, do not be dismayed…  but those are the two things that come so naturally to us aren’t they? We fear because we can’t see the future and we are dismayed because we are going places we never wanted to go.  But through all of this Jason and I are clinging to our faith in God, know that if God is telling us not to fear or be afraid it’s because He knows what He is doing and He has a plan and a purpose for our baby’s life and our live’s too.

A dear friend dropped by today knowing that I would be having a tough day (I was) and she brought me my 3 favourite things…  flowers, chocolate and a book (I’m so blessed!).   The book was Anne Voskamp’s book “One Thousand Gifts” and the first chapter is all about losing children believe it or not.  Anne lost a little sister growing up and her husband’s brother and wife lost two babies.   And in the first chapter Anne wrote…

There’s a reason I’m not writing the story and God is.  He knows how it all works out, where it all leads, what it all means.   I don’t.    

That spoke to me.  Of course we would change how things were going, if we could direct things differently we would.  But we aren’t in control, we can’t see the outcome,  and so we are choosing to trust the one who is… the one who formed us and knows us and has a plan for us.

He knows it’s heavy, but He is with us and will never forsake us.