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. :)
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.
ReplyDeleteHi 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!
ReplyDeleteThanks Pat, and yes absolutely please share my experience!
DeleteDanielle - 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!
ReplyDeletexoxo Alicia
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ReplyDeleteThanks for sharing this information with us, Will has the cutest smile ever. I would also like to share my friends experience, she isn't a fashion freak but she got her lip augmentation surgery at the Boca jaw surgery as she met with an accident last year and got facial injuries. Her maximum face injuries were cured with fewer scars, her jaw was also operated and some of her teeth were also implanted. She is frequently visiting doctors to recovery the scars on her face.
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