Thursday, February 21, 2013
An update on Leo is long overdue. Sorry to any of you who have come here for an update on Leo. I'm not exactly sure why it has taken me so long. The easy answer is time. I don't have any. The days and nights are filled with taking care of this little guy and our other three.
While time is definitely a real reason the more accurate reason is harder to define. I'm not exactly sure. There's so much to say, yet I don't know what to say. He is doing well. He had his second surgery called The Glenn on January 15th. He again came through wonderfully and had a quick recovery without any complications. We are very, very blessed.
I haven't wanted to do a post about how hard things are because who wants to read that? Also we know in the big picture Leo has done great! Sometimes its hard to see the big picture, you know? We have struggled getting him to eat and gain weight. And we have certainly struggled to get him to sleep (out of our arms anyway). He has happy moments, but has been generally miserable. Our guess is that he probably just doesn't ever feel good. At almost 6 months old (!!!) he has come leaps and bounds and we are seeing the light. We are lifted up daily by the angels around us. Our family and friends have been tremendous.
Our eyes have been wide open to a world we never really knew existed. The world of Heart Babies and Heart Moms and Dads. We have seen amazing things happen with Leo and with other babies. Miracles. We have seen warriors (for lack of a better term). Babies, kids, moms and dads who are fighting hard and long battles. Some have been fighting since birth. We have also seen tremendous heartbreak and struggles. Babies and kids who weren't as lucky as Leo. Babies who didn't make it. We went to a funeral of a wonderful and darling boy who fought a hard, hard fight. He also had HLHS and was born a few weeks before Leo. They were going to be best of friends and fight the fight together. Now he's gone. Why has Leo been so lucky and so many others haven't?
Our goal now is to keep him healthy until cold/RSV season is over. He mostly stays home. Definitely doesn't go to social functions. We have stayed away from parties and family get togethers. Scott and I split up for such gatherings and for church. We don't have anyone over other than adult family members. The kids hate it, but they can't have friends over just yet. We are looking forward to spring more than ever.
Socially he is on track I think. But he is a little behind on physical development. Both because he has had two major surgeries. But also because his heart is weak and things are generally going to be harder for him. He has a physical therapist that comes to the house to help him with the milestones.
It's a hard realization to know that there are a fair amount of babies with HLHS. Even a decent amount of kids. Not so many teenagers and as our cardiologist said the other day, "I know of a few in their 20's". It's really hard to put that aside and focus on what we have now. But what we have is beautiful. We have a darling boy who we love very very much. It hurts sometimes.
I think I covered it all. That wasn't so hard after all.
It has been the hardest of times for sure, but at he same time we are walking through a miracle. Of course we are so glad he is ours and humbled to be trusted with such a spirit.