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.

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.

Amen