Wednesday, January 29, 2014

T minus 6 days until Cleft Lip Surgery!

Well, we are less than a week from Will's surgery. It actually got bumped up a couple of days due to some scheduling issues and is now on Tuesday, Feb 4.  I've been strong for most of this journey so far, but I've been finding it harder to stay composed lately - I'm so emotional! As I've said before, on one hand I am super eager to have this behind us, but on the other hand I'm worried about how Will will react to the surgery, and even more so, I just can't picture what his new smile will look like and I'm going to miss the sweet smile I've already fallen in love with. We had our preop appointments today with the team and Will's surgeon, Dr. Warren, so now it is actually feeling real - it's hard to believe that the surgery we've been anticipating since we found out about his cleft at our 20 week ultrasound is actually upon us. Everyone on the team is thrilled with his progress with the NAM and there is nothing else that could have been done to make him more ready - he's as well prepared for his surgery as we could have hoped, and that makes me beyond ecstatic. Of course, there are no guarantees that his repair will be "perfect", but I can rest well knowing I did everything I could for him - going with the best cleft team and surgeon around and slugging through 16 weeks of work with the NAM, I know I have given him everything I could for the best possible outcome and won't have any regrets or "what if's". Dr. Warren said the surgery is actually more like 7.5 hours (yikes!), and that's because he does it a bit differently than most other surgeons out there - he repairs not just the lip, but also in this surgery he builds the floor/base of the nostrils and does an initial repair of the gums where he connects all three pieces in the hopes the bone grows together (and thus potentially avoiding a bone graft when Will is older). So now we wait, counting down the final days before his surgery, taking a MILLION pictures of my favorite smile so that we never forget the first smile we fell in love with. And really, we're lucky because as other cleft mommies have said, we don't get just one smile to fall in love with, we get two! And soon we'll be falling in love with Will's new smile all over again. For now, here's a pic of Will at 4 months old last week, as well as his most recent progress pic after 16 weeks with the NAM.

Saturday, January 11, 2014

And the countdown to cleft lip repair begins...

Happy New Year, all! It is hard to believe that the holidays have come and gone and we are now full throttle into 2014. And a big year it will be: Will's cleft journey will really get underway as he will have at least his first surgery to repair his lip, nose and gums, and possibly his palate surgery later in the year. We recently locked in Will's surgery date - it's Feb 6th... and I'm terrified. I'm terrified first because it is a long surgery (5.5 hours) for my sweet little dude to have to go through, not to mention I have no idea how I'll hold it together the moment I have to hand him over to the doctors. I'm terrified of his recovery afterwards as I know it will be difficult and I'm going to hate seeing him in any sort of pain. But most of all, I'm terrified because I can't picture what he will look like afterwards and I love his sweet little smile just the way it is! Of course, I know it's what he needs - not cosmetically, but physically so he can eat, speak, breathe better, etc. But still, it's so bittersweet. And so the countdown begins - we are less than a month away and I really can't believe how close we are. I obviously knew this day was coming but now it is starting to feel real. He only has one more NAM adjustment this coming week, and then we're off the following week and the next week is his preop with the nurse and the surgeon. Wow! As I said earlier, this surgery will repair his lip, nose, and gums all at the same time. This is actually not the norm for all cleft lip surgeries - typically these repairs would be done in multiple surgeries over more time, but because the team at NYU is so magnificent with the NAM, Will is ready for all of those repairs at once. Not only is it less surgeries for him to go through, but there is a much better result from just this one surgery. In fact, they even told me that there is a good possibility Will won't need a bone graft for his gums, which most cleft kids need to have at around 7 years old or so. That is not guaranteed, but I'll take even the chance that he can avoid that surgery (it's a tough one). I know I say it all the time, but I'm SO GRATEFUL for our NYU team of doctors - they are truly amazing!!

This is a collage of his progress to date (from 2 weeks old to 16 weeks old). Bottom right is current. His premaxilla (piece of lip and gum just below his nose, which was sticking out and pushed off to the left when he was born) is now centered and pushed back in, and his gums are now completely aligned and touching. He also now has a defined nose and his columella (the piece of his nose between his nostrils) is now longer than most babies his age (and he didn't have ANY when he was born). All of this alignment and movement is due to the work with the NAM, and means he won't have the telltale "flat nose" that many bilateral cleft lip babies have after their lip surgery (that usually gets fixed in a later surgical revision for those babies).
And here is a picture of Will today - just being cute!

I have to say, I am a HUGE advocate of the NAM as I believe it really does wonders for preparing cleft babies for a successful surgery and reducing the number of surgeries needed, and although it has not been as terrible as I thought it would be, I CANNOT WAIT to be done with it! As much as I will miss Will's cleft smile, I WILL NOT miss having to deal with the daily taping and watching out to make sure he doesn't bump his face or pull it out.
Beyond that, 2014 marks my return from maternity leave and the start of my shiny new job that I'm super stoked about! This was actually my first week back to work, and as eager as I am to get back to the adult working world, it was hard to leave Will knowing he still struggles with eating and everything. Plus his care is a whole other fiasco - we have a great daycare that Sadie goes to and they were willing to take him now, but being we have to keep him super healthy in the month leading up to his surgery, daycare was clearly not the right option (if he gets sick, they will postpone the surgery!). So for now we have a team effort of me, Buddy, and our moms watching Will up until his surgery. Whew! But he did pretty well this week and I think I'll relax more as I get used to not being with him 24/7. Also, this year Buddy and I will celebrate our TENTH wedding anniversary on July 17 (wow!!). I'm hoping we can try to get away or do something special to celebrate, but I'll guess we'll have to see how the year plays out.
So that's where we are right now. It's really exciting and scary all at the same time. Most important right now is keeping Will healthy - wish us luck!! It will be hard with a toddler who goes to daycare, but I know we can pull it off. So until next time... stay classy my friends. :)