CARLY + JOSIE'S STORY
After finding out in the womb that Josie had a fatal heart defect, Carly and Josiah @carlyemcclure waged a powerful war of beating the odds with their daughter. Their journey has been devastating, empowering, inspiring, hopeful, beautiful, and so much more:
“Josie has been off oxygen for over a week now. She’s off all IV meds except for 1. She plays & smiles & claps & talks/babbles all day long. She’s still Josie but she’s more alive. She’s living for the first time in her life, that’s honestly what it feels like.
Josie does not eat by mouth yet & may not for a long, long time. Her GI tract & her willingness to eat could recover in a few weeks or a few years. Only time and Josie will tell.
We are still weaning sedatives slooowly. We hit her weans way too hard early on & now we’re backing off. This could take weeks or months, still. Again, only Josie can decide these things.
Josie is still on Milrinone, a heart failure medication she’s been on since October. Her cath two weeks ago showed us extremely high pressures in her right ventricle & pulmonaries going into her lungs. It was disappointing because we don’t have a great explanation for her increased pressures (25-27 for my medical peeps) other than organ rejection or pulmonary issues. Neither seem likely, but for now her body is telling us it needs the milrinone drip. This can only be administered through an IV & this is definitely what is keeping us specifically in the CICU.
Lots of other systems are still recovering: her kidneys & liver are still fairly “sick”, her GI tract is all shades of crazy, the muscles in her legs are weak from months of disuse, her ability to swallow is inhibited my her gag reflex, her right arm needs rehabilitation still from her stroke in October, her lungs are looking good but they change at the drop of a hat based on her fluid retention.
So “when can we go home?” Friends, there just isn’t a way to know. This isn’t a one-size-fits-all program. There is no “average” number of days of recovery after going through what Josie has gone through. I wish I knew. It takes time. Josie-time.
But look at her. For the first time in her life I think we can say, “She’s thriving.”
Two years ago yesterday saw @josiahmcclure and I in Boston. We were there after a devastating whirlwind week in which we discovered an onslaught of horrifying things:
1. Our unborn girl had a fatal heart defect
2. Her chance for survival was slim because the necessary heart surgery required immediately after birth was incredibly risky
3. We were eligible for an in-utero heart procedure called a valvuloplasty.
We discovered the CHD on a Thursday. We were seen by a fetal cardiologist in DC on Friday. We were on a plane to Boston by Wednesday. And on that next Friday I laid on a table, in a room with 40 people and watched as they entered my belly with a needle and catheter tubing. Yes, I was awake. I was fully paralyzed from the chest down. Three anesthesiologists sat with me at the head of the table and wiped my tears as I cried. One put her own headphones in my ears and turned worship music on for me. Another stroked my hair and said over and over, “He is with you. You’re doing great, Mama. He is with you.”
Our chances were 50/50, 50/50 and 50/50.
50% our baby would die during the procedure or in the hours afterwards. 50% she would live.
50% the procedure wouldn’t even be possible. 50% they would be able to complete it.
And then 50% the procedure would save her left ventricle and we could avoid most, or even all, open heart surgeries or 50% it simply wouldn’t work.
The procedure was successfully accomplished.
It didn’t save her left ventricle.
Sometimes we take the risk and it still doesn’t fully pan out the way we hoped. Sometimes we take that leap of faith and it feels like we fall flat.
Sometimes we put our stock in one storyline and God gently leads us somewhere different.
It’s okay if you’re scared.
It’s okay if everything is different from how you imagined it would be.
It’s okay if you hoped for something else.
I’m not going to speak to your personal brand of suffering. I know from experience how hard this life is. So I just want to say instead, it’s okay.
You’re not alone.
And when you’re ready to look up, when you’re ready to find the silver lining, when you’re ready to move past all your 50/50 chances— God will be there.”
To read more on their current journey, please check out Carly on Instagram for remarkable words and strength. No matter where you are in your journey, Carly’s words will touch your soul.
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