Yesterday was Elliot's 1st birthday, though the party's today. It's amazing to see how far he's come in this short time. I remember back when we first got the news of his HLHS and the restricted atrial septum. As the picture grew clearer during those few months before birth, we had no idea how this was going to play out. We didn't know if Elliot was going to make it through the few minutes after birth, or through his surgeries, and what that life was going to look like. To say that we struggled with faith is putting it mildly.
However, Elliot arrived around 8:30am July 24th and he came out pink and crying, exactly what we'd hoped to hear. Though they were predicting that he'd need immediate surgery after birth due to the restricted atrial septum, in fact they had the OR ready next door for it, his sats were actually good enough and they decided he didn't need that immediate operation to fix the ASD. That in itself is a little miracle. When they did the first of his HLHS procedures at 6 days of age, the surgeon explained that he had no idea how Elliot was stable for that week. His atrial septum was completely closed off, which means no oxygenated blood should have been getting to his body since he didn't have a left ventricle to pump it there.
We spent 2 1/2 months at Children's Hospital of Philadelphia as Elliot recovered from his first surgery and we tried to get his oxygen sats up to a normal range. We all got home in mid-September, but did a 3 week stent in Egleston Children's hospital in October. We went back to CHOP for his second surgery right after Thanksgiving and were back home after one week. That was a whirlwind trip.
So here we are after a year and i thought everyone would be interested in seeing how Elliot is doing. Fantastic is all I can say. Granted, he's still on oxygen and has his feeding tube, but he's doing extremely well right now. He's progressing like the little boy he is.
To help you see how well he's doing, check out this video of some highlights from the last few months. Happy Birthday Elliot!!
A happy birthday indeed!
Posted by: Dave2 | July 25, 2008 at 09:33 AM
Hi guys -
I just want to say happy birthday to the little guy. Elliot is truly a blessing and you two should be commended on all the hard work that has gone into the first year. I can't promise it will get easier, but it will continue to be just as rewarding!! I'm so happy to hear that he's doing so well - give that guy a birthday squeeze from Laney and I and enjoy the party tonight. It's a milestone that for most is just another day, but for us, the meaning is huge.
Heart Hugs from Kansas City,
Alexis & Laney (HLHS)
Posted by: Alexis Bossi | July 25, 2008 at 10:59 AM
Wow! Elliot looks awesome!! I don't know if you remember, but I left a couple of comments here back before Elliot was born. I was pregnant with an HLHS little girl. It is so great to see that nothing can stop him! Happy Birthday, Elliot!!
I read your carepage update as well and you all mentioned about having to carry his food bag around. Julianne (my daughter) is tube fed as well. She has a little pump with a tiny backpack that's actually made for the little ones to wear on their backs when they start walking. Maybe you can get it from whoever you all get your enteral supplies from. I don't think I have any pictures of it on Julianne's blog, but if you want some I can get some.
So glad to see that things are going well these days. :)
Posted by: Jessica Caperton | July 25, 2008 at 04:46 PM
Many prayers have been answered. Thank you God! Happy lst Birthday Elliot!
Kathy (Eric's Mom)
Posted by: Kat | July 25, 2008 at 07:31 PM
Thanks guys for all the thoughts and prayers! He's really doing great right now.
Posted by: Jabulani Jonny | July 26, 2008 at 03:57 PM
His birthday is the day after my daughter Emily's.
I'm so glad to see your little guy doing so well. You're faith is inspiring. Happy birthday (albeit a few days late) to your little guy. You are all in our prayers.
Posted by: Brad Ruggles | July 30, 2008 at 08:39 AM