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)!!

Friday, October 11, 2013

Reality Time: Settling In and Starting NAM Treatment

Believe it or not, Will is 3 weeks old today and I cannot believe how fast time is flying! So much has happened since I last posted, so let me get right to it. Will's time in the NICU lasted for a total of 5 (long) days - once I took charge of his feeding he started doing much better and we were able to bring him home on September 25. He has been an eating machine ever since. To be honest, my reflection back on the whole hospital experience is pretty negative. I was advised to switch hospitals and have Will in Morristown because they were supposedly "more equipped" to deal with any feeding issues, but the reality is that no one knew how to deal with a cleft baby any more than I think our smaller hospital would have dealt with it. The fact that he was swept away to the NICU immediately after being born and given a feeding tube after 2 failed attempts at using one specialty cleft bottle (which, by the way, the nurses were using INCORRECTLY, which is why he wasn't able to eat with it) is really disappointing. He was never given a chance to eat on his own and never should have been given a feeding tube that early on. I'm frustrated that no one from the hospital's cleft team was available until 3 days after he was born, and they didn't do anything to prep the nurses or hospital of Will's arrival even though we had met with them ahead of time. Overall, I see major room for improvement and plan to share my experience and feedback with them in the hopes that other families don't have the same negative experience. Anyway, we were so happy to get him eating well and to get him home!  Here was Will ready to go home:
After getting home, the next hurdle was to get started on Will's treatment. A major part of his plan involves what's called a Nasoalveolar Molding (aka NAM) device - it's like a retainer that he must wear nearly 24/7 and its purpose is to move his lips and gums into closer alignment over the course of several months, thus creating the need for fewer surgeries with better success rates. The NAM is pretty standard for care in bilateral cleft cases like Will's because there is so much work to be done to move everything into place. Here's a generic picture of what one looks like:
Typically, babies are fitted for the NAM within the first week or two after being born. Well, the pediatric dentist from the local cleft team was supposed to visit Will while he was in the hospital and take his impression, but she didn't make it. And after multiple failed attempts to contact her to make an appt to get him fitted, I started to doubt her capabilities and commitment to Will's care, which made me second guess my choice of going with a more local cleft team versus the team at NYU. The NYU team invented the NAM, and is considered one of the best cleft teams out there. They also have a ton of experience working with bilateral clefts and have fantastic success rates. But of course, on the other hand, it requires a trek into the city every week for the next 5-6 months while Will has the NAM, so it's a major commitment. After much deliberation, based on the negative experience I had with the pediatric dentist on the local team, coupled with the fact that NYU is one of the top cleft teams out there and has much more experience with bilateral clefts in particular, we decided to change cleft teams and go with the team out of NYU. I gave them a call last Friday at 5p, and they had Will in for an appt that next Monday afternoon to meet the surgeon and get fitted for his NAM, and had the device expedited so that he could have it placed on Wed. The sense of urgency and focus they gave to Will in just one week has already proven to me that we made the absolute best choice for his care and I could not be happier! Here is a picture of Will just before getting his NAM placed:

And here he is sporting his new look for the next 6 months:
I'm happy to report that 2 days into the NAM, Will seems to be doing great with it. His little fingers do have a tendency to grab at the tape and he has managed to pull it out once (I think inadvertently), but it doesn't seem to bother him at all and he can eat better with it in since it provides more of a palate for him. I know it's early and it will be a long road ahead, but I'm optimistic!! So now we continue with weekly visits to the NYU team to have the NAM adjusted until he's ready for his lip repair around 5-6 months. I will of course post updates of his progress throughout the months leading up to his surgery to document his transformation.
So that's where we are. Having a newborn again has definitely been an adjustment (we're so tired!!), especially with a 2 year old also at home too, but we're starting to get into a groove and I know it will continue to get easier as we all adjust and get used to our new normal. I think Buddy and I definitely blocked out the memories of how hard it is having a newborn - it must be a form of self preservation because if you really remembered how hard it is I don't think anyone would ever have more than 1 kid. LOL. Regardless of how hard it is, Sadie loves her little brother, and so do we!