Perfect peace…

I have no idea where this week went, it’s flown by and been so busy!  But I’ve been meaning to do an update all week since I was back in Toronto on Monday.   But then I was battling a bug and Sophia got the stomach flu and I started to declutter my crawl-space (that horrid room) and I was helping Jay with some stuff, so now it’s Saturday and the update will finally be forth-coming.

So…  like I said I was back in Toronto on Monday, again.  Seeing all the dr’s once again.   It almost seems old hat, except this time  I left Jason behind because the appointments were going to be routine and my dad drove me.  And its kinda funny but I’ve never really entertained the notion of driving to the big city by myself.  I’m too pregnant, too distracted and I drive a big Suburban.  Enough said.    So my dad drove me and I had a great day with my dad, thanks dad!

So yet another echocardiogram for baby (I kept falling asleep during it – these things take so long!)  but even I could see from the screen that the baby’s left ventricle isn’t pumping anymore and it didn’t contain any blood.  The valve that was opened has narrowed again and so they are now calling her heart hypo-plastic.   Poor little baby heart.   So again no miracle,  at this point it’s about moving forward and accepting our new reality.

The hypo-plastic left heart meant we started to seriously talk about surgery options with our cardiologist.   And the most confusing thing is that there are two options for the surgery she will need right away, and if we want to, we can decide which surgery she will get!

Huh, come again?

How on earth would we be able to decide something as important as that?   But that can be addressed later, and in the meantime my dad and I  got a tour of the hospital.  Of course then I’m wishing that Jason had actually come and could see everything with me,  but he will just have to get the tour again next time.

We saw the different rooms the baby would be in during the different stages of her recovery, and what floor the operating room was on.    Natalie – our contact there – wanted to show us a baby recovering from cardiac surgery, and I remember waiting to find out if we could with that shivery anticipation of slight horror – like it would be one of those things you don’t want to see, but can’t look away.   Apparently parent’s find it easier seeing another baby in that condition before they see their own…. kinda ouchy but understandable.   But thankfully that little trauma was delayed as the baby’s were all occupied and I think that was God’s timing because it would be way better to have Jason there with me for emotional support.

So then dad and I went for a little walk over to the high-risk pregnancy clinic at Mt. Sinai hospital for more appointments.    And next on the list was meeting two dr’s from the neo-natal team that will whisk my baby away after she’s born to stabilize her.     She will need to be given progesterone immediately after birth to keep the ducts in her heart open so she won’t go into shock, but they were pretty sure I could give her a quick kiss before they take her and if she is stable I might even get a quick cuddle before they transport her over to Sick Kids, the children’s hospital across the street.   Small mercies right?

While I was talking to them it got emotional – I don’t think anyone wants their baby taken away at birth – and they then subtly asked me if I had been told what her chances were.    I’m no dummy and I understood right away what they meant – and thankfully I was able to tell them coherently that I knew that my daughter could die at birth or before they could stabilize her or really whenever.   And even though that thought breaks my heart it really is our reality.  And their relief was visible…. their job must be so tough in situations like this that I’m sure it’s help to ease the stress of their jobs knowing that a parent understands what they are up against.

And then I met with the Obstetrician (such a long day!) but now I have a due date week!   They are planning on inducing me between December 3rd and 6th, and that is coming very soon.  So that is why I’m trying like crazy to get things sorted and organized and prepared here,  that’s only 9 weeks away!

But the day did finally end and thankfully dad and I were able to sneak out of the city just on the cusp of rush hour and made it home in fairly decent time…. whew.   But then the next day was tough.   I’m finding that these appointments tend to throw me for a loop for a few days.  Having to face what is coming always puts me in a bit of a tail-spin and my thoughts get all tangled and messy and I cry a lot and I don’t understand and I feel like this is the last place on earth I want to be, basically I get kinda depressed.

But then God slowly and surely brings thing back into focus and I can find myself back into the present, where things are still OK and God is good.

Thursday morning this verse came to mind… Isaiah 26:3

You keep him in perfect peace
whose mind is stayed on you

And then I realized that I get so caught up in everything after the appointments that my mind is NOT stayed on Christ, it’s all over the map and worried and fearful, and no wonder there is no peace to be found.

Trusting God, believing His promises, knowing that He will work out everything out for His glory is where peace is… and it’s not the easiest thing to be done in the midst of turmoil, but very necessary for me if I’m going to stay sane through this whole waiting and wondering process.

I can’t wait until my baby gets here…

But in the meantime I’m so thankful that I”ve found my way back to perfect peace, for now.


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.