Pre-admissions Testing for Palate Surgery

We took Emily to NYU yesterday for the pre-admissions whirlwind which included interviews with the anesthesiologist, surgeon (in Em's case, a surgical resident), pediatric physician's assistant (I think), lab technician who took her blood, cleft team nurse practitioner and the team ENT.


A laughing Emily the day before our trip to NYU (don't worry, she's still laughing even after the long day)

We got to NYU 20 minutes late to our 11:00 appointment at pre-admissions and had to wait until 1:00 to be seen (we got stuck in traffic on the FDR). Ana was with us because our babysitting plans fell through. To make long story short, my mother got into a car accident on the way to babysit (the night before - she was going to sleep over). She's fine, but the car flipped and rolled into a ditch and it's not fine. So Ana came along for our very long day. There's a park right in the NYU complex so Jim took Ana there (where she proceeded to get filthy) while I waited with Emily.

After some confusion about where we should be after we missed our appointment, I wolfed down a 5 minute lunch and Emily went through most of her appointments including getting blood drawn, which turned out to be much less of a big deal than I thought it would be. They need to take less blood for the palate surgery than for the lip, so it really only took a couple of minutes and it was from her finger tip. She weighs about 24 pounds! I think it's more like 22-23 because she was fully dressed and wearing her diaper and she's almost 29 inches long.

I met another family in the waiting room for pre-admissions testing. They've seen Emily's blog and I gave them a Soft Sipp. Their baby is having lip surgery next week and he didn't need to use the NAM because his cleft is a unilateral incomplete. He will look great (he's already beautiful).

Ana had meltdown about 3:30 when the ENT was checking out Emily's ears. Emily was a trooper, she actually fell asleep on my lap while Dr. Bernstein, the team ENT, peered into her ears and confirmed the need for tubes. He also confirmed a few suspicions that I'd had about fluid in the ears such as compromising her balance (she seems a bit wobbly when walking while holding onto things), causing discomfort when laying down (she still wakes up at night) and causing loss of appetite (she's big, but it's mostly from all the formula not solids). It bodes further research. I can't believe I've never looked into side effects of fluid. I guess I was so focused on the cleft itself that it never occurred to me.

This post is getting long...I will follow-up with an update soon.

Ear Update

Emily's been on the latest course of antibiotics for 8 days and she seems to be doing better. She saw an audiologist on Monday and she can hear well, although she does have some loss of hearing which is due to "stuffy ears" (fluid in her ears). He said her ears weren't infected, which was a huge relief. She has enough hearing loss (I think it's in the 25-35 decibal range) to prevent her from speaking, which is kind of ideal because we don't really want to encourage her speech until after palate surgery. She vocalizes very well which is an indication that she can hear. He felt that once her tubes were in the issues with hearing will go away altogether. Good news!

We are taking Emily to NYU next week for her pre-admissions testing. We'll also meet with the nurse practioner on the team to get information about the surgery and arm restraints (ug). Still, I'm looking forward to seeing the team again.

And speaking of hanging out with the team, I will be attending the American Cleft Palate-Craniofacial Association (ACPA) 2005 Annual Meeting in Myrtle Beach, NC with the NYU team the first week of April. I was asked by the team to attend with them to speak about the NAM from a parent's perspective. The entire team will be presenting and I'll only have a few minutes to talk, but it is a huge honor. They will show this blog at the seminar!! I'm so excited.

NAM Gallery!

I've started a gallery of babies who used the NAM. Thanks to the moms who sent me pictures of their gorgeous smiling kids. They are all inspiring.

Visit the Gallery!

Ear Trouble

Emily was seen by her pediatrician yesterday as a follow up to her last ear infection. She was on antibiotics for 10 days and we waited a full 10 days for the follow up visit to be sure the infection was gone. Well, it wasn't. Both ears are filled with thick fluid and the eardrums are bulging. I feel so bad for Emily. This is one of the common issues with babies who have a cleft palate - chronic ear infections. We knew about it when I was still pregnant and I worried then, but Em was free and clear for the first four months and I'd hoped to dodge that bullet with her. Ah well.


Here she is in pre-crawling mode. She's thinking about it...will she do it??


Houston, we have lift off!!!

So back to the ear stuff. She's on antibiotics AGAIN for the next 10 days. The team ENT at NYU will look in her ears on the 30th - the same day she's got all the pre-op stuff. I just made an appointment for a hearing test which unfortunately won't get done until April 14th because I waited so long to schedule it (I originally thought they'd be doing it at NYU and then waited to long to set it up once I learned they weren't). Bad me!!! ug. The ENT at NYU will want to look at the results of the hearing test before he can recommend tubes, but at least he'll get a look in Emily's ears on the 30th and he'll have the results before her palate surgery, so I hope there won't be a delay with that. I really hope the tubes will solve this chronic fluid and infection problem and my baby will start to hear normally. More later...

Photo Progression of Treatment with the NAM

I have added a collection of photos that demonstrate Emily's treatment and progress with the NAM as it molded her face each week prior to surgery. I pre-dated this collection of photos back to February 2004. There is a direct link at the top of the page or you can click here to see pictures of Emily from birth until her surgery in October.

11 months old

Emily will be 11 months old next week. It seems like she's changing every day and turning into a toddler right in front of us. She can crawl FINALLY. She started really moving last week while I was away in Florida (of course I missed it). She also cut two teeth on the bottom last week even though I told her not to cut any teeth while I was away. Her fourth ear infection seems to be resolved. At least, she finished the antibiotics and hasn't seemed uncomfortable. She'll go for yet another follow up next week to be sure her ears are clear. Emily has an appointment at NYU at the end of the month to get a hearing test and do the pre-operative testing for her palate surgery. I'm looking forward to seeing the team again, but I am dreading the pre-op stuff because it means they'll need to take blood. I had to hold her down for 15 minutes while they squeezed four vials of blood from her finger for her lip surgery. It brings tears to my eyes just thinking about it. Palate surgery is April 19th at 7:30 am. We've all begun holding our collective breath and mentally preparing for this next step in Emily's journey towards wholeness.


This is a classic Emily pose. She's sitting in front of the t.v. and I had to make all sorts of strange noises to get her to look at me so I could snap her picture. She sits with her legs crossed all the time like a little adult.


Here she is cracking up because Ana's rolling around with her in her toy area (the foot in front of Emily is Ana's). They play together a lot. Ana told me that Emily's going to be talking to her soon (I think she's looking forward to having Emily as a constant playmate). Notice the very chubby knee. Emily has cleared 21 pounds and feels heavier every day!