In the days and weeks that have passed starting with the loss of sweet Wyatt, it seems there have been a flood of babies and kiddos passing from complications of HLHS. Wyatt and Travis have by far affected me the most as I talked with their Moms, consider them friends within the heart community and we have rooted each of our babies on. How much of an impact has it had? I have been feeling like a completely different person, one sort of robbed of happiness and wondering when the cloud was going to lift.
But in the midst of the sadness and darkness brought by all those losses, there are shining stars that give light and hope to go on. Let me start with one of the newest members of the HLHS club and she's a rockstar...little Brooklyn Rose was born in Boston last week all 6lbs and change of her and was in for her Norwood about 12 hours after birth. There wasn't any rush, it just so happened that the doctors had an opening in their schedule and she was ready so off she went. Wow, was she ready. Now 7 days post-op, her chest is closed, she's completely extubated, only has one chest tube left and yesterday was given her first bottle. I've never heard of a baby making so much progress so quickly post-Norwood. She may be small but she's a mighty one and that makes me feel so much better.
Then we have Mr. Bodie, he just celebrated his first birthday this past weekend. Little man knows how to dive into his cakes, he literally picked it up and crammed it all in his face to make sure he got all the cake he could. Bodie's story started off rough, in fact I want to say he was nearly 9 months old before he had spent as many days at home as he had in the hospital due to infections, setbacks, etc. (I don't mean to shorten or undermine the severity of his complications by the etc). It's just more than sufficient to say that he has more than his fair share of things go wrong and yet, there he is happy, bright eyed, Mama's boy who's now crawling around getting into everything. Bodie - if you could please come teach Olivia the crawling technique, we'd be much obliged.
Closer to home, there is our buddy Jonah who finally had his NG tube pulled early last month and since then it seems he is like a flower after a good rainstorm. His personality has done a 180 and he's now really been able to enjoy life, eat everything by mouth and move into solids. His latest pics show some major chubbage going on. Now we're just hoping for an end to flu season so we can do some playdates with these two little warriors.
Keaton is our other buddy with whom we're always bonded with, after all Olivia and Keaton were next door neighbors for their entire stay in the PSHU following the Norwood. Keaton and Olivia are like fraternal twins in the sense that they have absolutely nothing in common about them, but developmentally they're always doing the same things and meeting the same milestones. His mom and I laugh when we get them together about how similar they are and yet, quite their own little people. Keaton has the most beautiful blue eyes and will be quite the ladies man in the future, but for right now he's flirting with the idea of crawling. He eats basically anything that his Mom puts in front of him and has incredible verbal skills.
Last but not least of course is my own little star - these days she really is thinking that she's the center of the universe. Not just ours, but anyone who has the gift of her presence. She is sort of demanding of attention and I'm hoping it's a little bit of a phase. Nighttime routine has gone out the window and I really don't know why or how it all happened. I do know the other night at 3 am when I went in there to see why she was having a meltdown she greeted me with a smiles and some clapping. Not the worst way to wake up, but certainly not what I wanted from Missy at 3am.
These beautiful little ones and so many more like Aly, Chase, Jacob aka Jake, Josie, Hope, and all the other little heart kiddos we're tied to are the reasons for that dark cloud that's been following me to get kicked to the curb. No one knows what our future holds, but when our bright hopeful future is right in front of us like these little ones, you just need to savor the moment. I need to take some more of my own advice.