Several times a day, it'll hit me: 10, 15 years ago, Sammy would have had little to no chance at life.
Before the three surgeries (Norwood, Glenn, Fontan) were created and used with some sort of regularity, HLHS babies invariably died within days of birth. So, just 15 years ago, this little bugger kicking and rolling around would have had just a few days with us. A few days. It's a hard thing to stomach.
Now, they give him an 85% of pulling through. The survival rate of the second two surgeries is 99%. Though, there's little to hang on to beyond that right now - the majority of oldest HLHS Norwood children all seem to be in the 8-10 year range. We don't really know how these altered hearts will hold out in the long run.
That's scary.
It's a sobering thought - it really is. I'm trying to see it all from the perspective that things are 85 times better for him now than they would have been in 1995. He's 85 times more likely to survive. I'm trying to remind myself to hang on to that and not let that 15% overshadow it all.
I'm trying - but it's hard not to be scared sometimes. Sometimes, when I'm doing okay, I wonder if I'm just in denial. I know none of us knows what the future holds, but this is just really tough to swallow some days.
How are you guys doing? It's been a few weeks since your last post ... just checking in and letting you know we're thinking of you all.
Hugs,
Tricia
Posted by: Tricia at January 30, 2006 10:05 AMHello,
How is everything. I am so glad that Samson is gaining weight. It sounds like he will be very strong to go through this surgery. It sounds like you and Jason are holding up. Are you going to have a c-section or are they going to induce you? Do you have his room ready. What colors did you chose? I wish you lived closer. I can't wait to see the pictures. If you need to talk give me a call. Talk to you soon.
Cousin Eileen
Posted by: Cousin Eileen at January 31, 2006 10:03 AM
I read your posts and it's like I'm reading my own words. I remember the feelings you are experiencing all too well.
Just a tip from one heart mom to another: Save all the oral syringes they use for Samson in the hospital. Have them dump them in one of those handy pink tubs. They are a lifesaver to have when you're at home and administering meds because who really has a 1.2 ml dispenser laying around? Also save the caps that attach to the syringes. The hospital doesn't reuse them and will just toss them otherwise. It's helpful to be able to measure out all the meds for the day and just grab a syringe as you go along.
Posted by: Tricia at January 18, 2006 10:39 AM