Adventures with Ellie: Home & healthy

We are now 2 weeks post-op and home! Our nurses are back at it in the house – which is amazingly helpful! The boys are home with us (finally) and all is back to normal… but a better normal than we had a few weeks ago. During our trip back from Boston, I was pushing Ellie in her stroller and something came over me where I imagined Ellie being a toddler – maybe three or so. She was sitting between my knees facing away from me. I was combing my fingers through her long, caramel colored hair, pulling it into a ponytail. Then she hopped down and walked away, still not facing me, but I watched as her ponytail bounced with her stride, ribbons dangling down around that sweet little spout of hair. This was the first time I’ve really imagined Ellie as anything more than a baby. And it was wonderful! I was instantly misty-eyed at the thought of her running around. For the first time, I could actually see her as a healthy little girl… a little girl with a bouncy ponytail tied in ribbon. A little girl off to trample through the mud with her brothers, I’m sure… but a little girl, nonetheless. She wasn’t a baby. For the first time, she’s healthy enough for me to imagine a future for her… and that’s amazing!

I had full faith that she’d do alright before. I had no doubt that she was strong enough to pull through the dark, scary days she’d gone through… but for the first time, I caught a glimpse of a healthy (dare I say, “normal”) little girl. Ahhh – what a moment for a mom! I had hoped for a future for her, of course… I’ve thought about where she’ll go to preschool and grade school, I’ve even thought much farther down the road and considered home plans that had an apartment attached or over the garage in case Ellie doesn’t become independent enough to live alone. I hope, for her sake, that’s not the case… but I mentally prepare myself for all options. I have plans to teach her things and enroll her in activities and such, of course… every parent thinks of those things. But I hadn’t fully imagined her or visualized her as a child. I don’t know if I’ll ever get that image out of my mind… the image of her bopping around with a bouncy ponytail. I hope it’s forever back there, reminding me of the amazing hope that we gained after enduring what are sure to remain the scariest days/weeks/months of our lives.

Our sweet girl is doing great! We can’t wait to share her with the people who have prayed so hard for her. We love when we see others when we’re out with her… we are excited to bring her back to church this weekend. We love that we can take her on a walk and outside to watch her brothers splash around in their little pool. We love that she’s able to eat more by mouth these days… and she’s awake so much more. We love that we’re just dealing with teething pains right now (although teething sucks… let’s be honest). We look forward to allowing our boys to get back into preschool next school year. They missed last year because Ellie was too vulnerable to expose to all the ickies that come home from preschool. They couldn’t be more excited about going to school this fall.

I don’t have much more of an update for now… things are going well… praise God! We’ll meet with our cardiologist soon and then get a referral for another sleep study within the next few weeks. Once we’re on the other side of that, we’ll have a better idea of how we’ll move forward with Ellie from an ENT standpoint. If she still has severe obstructive sleep apnea, they’ll be searching for a source of the obstruction and possible treatments there. If they don’t see obstructive sleep apnea anymore, we may be able to start weaning off the ventilator at night and possibly looking at options to get rid of her trach. I’m not holding my breath on this… but I am excited about the possibility of getting rid of it sooner rather than later.

To give you an idea of how much this last surgery has impacted how Ellie looks and feels, here is a side-by-side of how Ellie looked on our way TO Boston and then another picture of her on our way HOME from Boston. Amazing, right? In the left picture, you can see how gray/purple she was. Her mouth was always purple. She was barely awake and on quite a bit of oxygen. Her eyes tell the biggest story, I think. In the left, she’s beyond exhausted. We were just so used to seeing her this way… so when she looked pink and healthy post-op, we literally had to spend several days just staring at her, appreciating how beautiful her coloring was. When she was awake and back to her healthy self, we were thrilled with how much energy she had. She’s amazing! Her surgical team is amazing… all those who held us up in prayers through her procedures and surgeries are amazing… all of those who have offered support or meals or who have taken care of the boys are amazing... and our God is surely amazing! Thank you all so very much - we're thrilled to share our little girl with you and celebrate how wonderful her new little heart is!