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. :)

4 comments:

  1. I too am going to miss that smile. It will be different in a way for sure, but Will smiles with his whole face, so it will be much the same. I love that I can be there to help & I won't give up my 1:1 time with Will for anything. Ema loves you so much Baby Will.

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  2. Hi Danielle - this is Pat Chibbaro (for any readers who don't know me, I am the nurse on the NYU cleft team!). Shelley (our speech pathologist) gave me the info about your blog and it is just wonderful! You are doing such a great thing for so many new parents, who are just at the beginning of this journey... thank you so much for sharing what the experience really is like - the ups/downs, challenges and joys! I wanted to ask you a favor. I will be giving a presentation at a NICU conference next month and the focus will be on how to prevent overtreatment while promoting an optimal feeding environment for the newborn with cleft lip and palate. Would you allow me to share your blog and your experience with the participants? I will see you soon!

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    1. Thanks Pat, and yes absolutely please share my experience!

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  3. Danielle - Baby Will really does have the sweetest smile ever. Thank you for taking us along your journey and good luck in the next few weeks. Stay strong my friend... a mothers love always truimphs and Will knows you are anxiously waiting for him to come out of surgery just fine and he will make sure he makes mamma proud!!! ..Nick and I will be thinking of all of you on Feb 6th!
    xoxo Alicia

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