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.