Bodie had a ROUGH start. A ridulously rough start. 3 open heart surgeries, 2 cardiac catheterizations and long hospital stays that actually had nothing to do with his cardiac condition - all before he turned 7 months old. But, once we got past that point (honestly, once got past his MRSA admission), life was been wonderfully, blissfully NORMAL. Am I hiding his medically fragile condition somehow, to try to give the appearance of normal? NO. Am I normal? I'm getting there - I'm starting to finally relax and not freak out quite so much about him. But Bodie? He's pretty dang normal. How so? Well, here's a peak into our lives and you can decide for yourselves...
He is army-crawling everywhere, but his favorite is our kitchen floor - so gross. No joke, tonight, he insisted on crawling around the kitchen floor while Dusk was making pizza - at one point, I looked down and noticed he had flour ALL OVER HIS SHIRT AND PANTS. Ah well, at least it's less for me to mop up later, right? His singular mission in life these days is to put anything and everything in his mouth - and even better if it's a choking hazard. Last week, in one afternoon, I fished out the foil from a reeses peanut butter cup wrapper, carpet fuzz and a piece of tinsel (mind you, we've never put tinsel on a tree in this house, so yeah, he's pretty hard core to find stuff like that). Full crawling is still a little ways away - he won't get up on all 4's by himself, but if you put him up on all 4's, he will start rocking like he's just raring to go. He can also sit unassisted for long periods of time, and loves to sit and play with his toys (as long as someone, preferably mommy or sissy, is sitting right next to him and playing with him - he's not so good at the whole independent play thing). His current favorite is taking the blocks out of his shape sorter and then crying until someone put them back in for him, only to start the whole process all over again. He claps, he waves, he gives slobbery kisses to mommy (just started that - it's so cute). He also loves to go for walks, especially to the park. He's babbling all the time - dada is his current favorite. Dusk is loving that one. :-) We're finally starting PT, twice a week, just to catch him up in his gross motor skills.
THE MEDICAL STUFF
The future? I don't know. The reality is that there is a very good chance Bodie will need a heart transplant someday. Maybe soon. Hopefully not. The fact that he has his genetic arythmias and some thickening of his right ventricle increases the odds of him needing a transplant, they think. The reality is that no one knows. Every hypoplast is different and his doctors have never seen a case like this. All of his extra quirks may not make any difference to his long-term prognosis. But we do know that the oldest survivors with HLHS are in their 20's and some are doing quite well without even having needed transplants. So, we have great HOPE for Bodie. This field of medicine is moving at lightning speed. 20 years ago they were just starting these surgeries and most patients who underwent them didn't survive. Now, many centers have survival rates upwards of 80 and 90% with these surgeries. The landscape of treating HLHS has changed dramatically in the last 20 years. So why would I worry about what might happen 10 or 20 years from now? I don't. We'll get there when we get there.
I don't say this to brag about how great Bodie is doing, because I know, as with all cardiac kids, things could change on a dime. And they have changed before for Bodie. But that's true even with heart healthy kids. We heart parents just have the luxury of understanding how quickly things could change, so we appreciate each day a bit more. But I say this to give HOPE. Although the beginning, almost without exception, sucks, it can get better. Kids with HLHS can and do lead "normal" lives. I know many others, like Bodie, who really are doing great. And, let me make it clear, I know those with feeding tubes or on oxygen or who have to have daily injections to avoid blood clots, or have even had strokes (kids are remarkably resilient) and they, too lead, normal lives. They are cute, sweet and vibrant children. No fancy schmancy language. It's that simple. So take that, Baby Center poster. :-)
Great post, Amy! Very honest and straight-forward. Now if only you were "allowed" to post it on that Baby Center thread without being chastised and having it deleted! Ugh.ReplyDelete
I LOVE this post. Like some of the posters on baby center, we were told that our child would have no chance at a normal life. What's "normal" anyway? I, too, was thinking termination after all of the negative info received. If it wasn't for the internet and HLHS success stories, Wyatt might not be here today and that breaks my heart. I wish with everything that he didn't have to go through the surgeries and the pain, but he is such a happy boy! He smiles more than anyone I know. He flirts with the nurses. He is just such a blessing! The road is difficult but we are so happy!ReplyDelete
Such a great post!! I couldn't have said it better myself! I too was given the option to terminate and only had that day I found out of Jack's condition to decide. And to be honest, I never even thought that to be an option. When I told the doctor that I wouldn't terminate, his smile became so huge it encouraged me and I knew I made the right choice. Jack is my first child and although the first months were hard and overwhelming, I look at him and always say... what heart defect? And when new people meet him, I feel like its jack and my secret that he has one. So many people say, "now isnt that the picture of perfect health", and alls I can do is smile, With a tear in my eye ofcourse. Jack is worth everything we have gone through, all emotions, all the tears, all the fear, and ofcourse all the happiness. One day, I hope he can look back and say the same thing!ReplyDelete