Saturday, September 20, 2014

Dear William

My heart is filled with joy and love and also relief - Will is ONE today! Which means... WE MADE IT! We made it through all of the difficult treatments and surgeries in his first year, and he can just enjoy being a kid for hopefully years to come now! Here's a collage of Will's first year:
To capture my sentiments, I decided to write Will a letter - something he can look at and hold on to forever.  And I'm now sharing it with you too, so here goes:

Dear William,

I can't believe how time has flown; my little man, you're turning ONE!
I feel so lucky and so blessed to have the privilege to be your mom.
It feels like just yesterday that I held you in my arms for the first time,
And now a full year later, we've been through so many firsts of different kinds:
Your first smile, your first laugh, all of your first bumps and bruises,
I've adored watching every moment as you grow, and now you're off and cruising.
But son, the year has also brought with it some challenges you see,
This year I had the heartbreaking task to hand you off not once, but twice for surgery.
You've been through so much more in your first year of life than most will ever endure,
you've come so far and shown such strength that it touches me to the core.
You have a world class team of doctors, and we are grateful for all they've done,
But William, please don't ever forget that we've loved your smile from day one.
I love you more than words can say, and you're the bravest person I know.
You've touched and changed so many lives, and your impact will only continue to grow.
And while this year has brought its share of great times as well as some that were hard,
I would not change a single thing, as it's made us who we are.
So as I wish you a very Happy First Birthday, I also have to say:
You are my superhero and my inspiration each and every day.

Love always and forever, with all of my heart,

Wednesday, September 17, 2014

On the Other Side of Cleft Palate Surgery!

We made it! We're on the other side of palate surgery... and it feels GOOD! On September 9, Will had his palate and other side of his gums repaired, ear tubes placed, and steroid injections in his scar. The morning of surgery we arrived at NYU Langone Medical Center bright and early. Will was in great spirits, and it felt a little strange to see him be so happy and playful - I felt like we were deceiving him. But really, I think it was better that he was happy and didn't know what was to come before going back. That's one benefit to having these surgeries done when they are so young. Here we were waiting to get checked in, and then ready to go back:


 The surgery took about 4.5 hours, which is a little longer than we expected, but other than that, it went exactly as planned. Dr. Warren explained afterwards that Will's cleft palate was on the wider side - he basically just had gums up there (see my last post for a pic), his nasal bone was off-centered (it's normally centered), and he has a naturally high arch to his palate, all of which made the surgery just a little bit more difficult to complete - hence the reason for taking longer. But Dr. Warren said it went great, regardless. We got to see Will around 1:30p, and it was just as hard as the first time to see him in recovery - he was very groggy and trying to come out of anesthesia, and clearly was in pain. I of course held him as soon as we got back there, and before long he was drinking without protest (a HUGE accomplishment immediately post op). Here we were in recovery:

Thankfully, this time around, the nurse on the team, Pat, pulled some strings to ensure we weren't stuck in the 4 baby room again overnight so we had a normal 2 patient room. It was uncomfortable, but 1000 times better than the last surgery. Will didn't want to sleep unless he was held, so I spent the night on the reclining chair with Will in my arms, and we managed to get a few hours of sleep together that way. It wasn't great, but it was no where near as bad as I expected it to be. And he continued to drink throughout the night, so we knew we would be discharged first thing in the am.

Since being home, Will has just amazed me with how he has handled this recovery. It's been so much better than the first surgery. By day 2, we had smiles and even some laughs, and day 3 I had him back on his regular nap schedule! And once he figured out how to crawl and cruise with the arm restraints on, he was a much happier baby. He does still wake a few times a night - at first it was for meds, but now I think he's just mostly uncomfortable because of the damn no no's. We are still struggling to get him to drink enough fluids as he really just seems uninterested in anything liquid at all, but he's getting at least the minimum to keep him hydrated and I know eventually he'll come around (I hope anyway)!! But all in all, I cannot complain, and in fact I'm still pinching myself at how well he's doing. At 1 week and a day post op, it almost still feels unreal that we actually made it to this point already, but boy does it feel good! Here's Will a few days post op:

We have a follow-up appointment with Dr. Warren at 3 weeks post op. If everything looks good at that appointment, we should be cleared and surgery free until he's about 7 or 8 years old (and possibly even later)!!! So please cross your fingers for us friends, as that would just be amazing news for us to receive. But for now, it's time to help Will continue to heal, and of course - plan for his FIRST BIRTHDAY that is just THREE days away!! Wow - what a year it's been and I wouldn't change it for anything.