Tuesday, October 29, 2013

Cleft schmeft (no, really!)

Wow - time is really flying! Will is now over 5 weeks old, and who would've thought - with all the research, preparation, and endless worrying about Will's cleft while I was pregnant, I have to say that to my great surprise, dealing with his cleft has almost been a non-issue so far! Yes, he has his NAM and we have weekly appointments (aka treks into the city) to get it adjusted, but we really haven't had any issues with that yet. What's been most stressful so far, you ask? The reality is that Will is finicky. Sometimes he fusses and cries through bottles, and the biggest challenge has been trying to figure out why he cries through some bottles while others he eats with no problem whatsoever. At first I suspected gas, but the gas drops and gripe water don't really seem to do anything. Then I suspected silent reflux, but after 5 days on Zantac it doesn't seem to make a difference either. So maybe he's just fussy sometimes?? Then, add on top of that an already feisty toddler who has decided to get a little feistier since that baby arrived (and who now wakes up MORE overnight than her baby brother does), has been the hardest thing for us at this point. If you know me, you know I'm a planner and I like to know what I'm going to do and when it will occur... clearly this conflicts with the reality of caring for a newborn who does not care what my schedule or plan is and this, my friends, has been the most difficult part for me to manage. Luckily, Will is a great sleeper, taking good naps during the day and sleeping 5-7 hour stretches overnight already (what a difference a good night's sleep makes). Super thankful for that!

Will's cleft treatment, on the other hand, is something I CAN plan for and schedule, so maybe that's why it hasn't been as hard as I expected that part to be.  And speaking of, after just 3 weeks with the NAM we are seeing amazing results. Will's premaxilla (the part of his lip and gums that is detached under his nose) started out to the side and is now nearly centered! This first picture shows our progress after just 1 week and 2 days with the NAM:

And here is Will at 1 month old (taken on 10/20) - I just LOVE his sweet face:

Tomorrow, Will gets the nose stents added to the NAM, which will help to shape his nostrils - I hope that goes as smoothly as everything else has gone so far. Wish us luck!! But more importantly, send us some good vibes in the hopes that we either find what's causing him to cry through some of his bottles or that he grows out of it - I'll take either at this point (serenity now)!!


  1. What a doll! My Will is almost 6 months and was born with UCLP. He had his nose/lip repair in August and are prepping for soft palate repair. We didn't have to do the NAM, so it's interesting learning about it. Good luck tomorrow!

  2. I'm loving following your journey! Thank you! Prayers are with you.