Cleft Stories

Emily had what was supposed to be her final NAM adjustment on the 24th. Dr. Brecht elongated the nasal stents on the inside to try to get a bit more differentiation of the columella from the prolabium. Unfortunately, the adjustment was a little too aggressive. In 24 hours, Emily was in agony. I thought she had an ear infection because she had boughts of inconsolable crying and she was pawing at one ear. She didn’t try to take the NAM out though, so it didn’t occur to me that the NAM was the problem.

Here’s me (looking goofy) and Emily with Pat Chibarro, Nurse Practioner and Team Coordinator

Emily’s best friend at NYU is Shelley Cohen, Speech Therapist, Feeding Specialist and Team Coordinator.

From left to right, Carter and Madeline (Madeline is 7 days post-op for her lip repair and looking fantastic) and Colleen (holding Emily). I met Carter and Colleen on www.cleftadvocate.org, an online support group. Colleen’s son Zachary has bilateral cleft lip and palate (he’s not in this picture because he’s fast asleep).

Anyway, so Emily was miserable and I took her to the doctor, but her ears were clear. I took the NAM out to show the doctor how it worked (he wasn’t Emily’s standard pediatrician) and when I did I noticed blood in her nose, plus she screamed in pain when I took it out. It turned out both nostrils were very irritated and bleeding on the inside by the tip of her nose. We ended up taking the NAM out from 3 am until 8 am this morning because Emily couldn’t sleep (she slept with the NAM out though).

We went back to NYU today – we drove in and took Ana – and Dr. Grayson adjusted the stents so they are much more rounded and shorter. Anyway, she’s a happier baby (hooray) and her nose seems much better since we kept the NAM out for so long. I missed Ana so much because of Wednesday’s trip that I asked Jim if we could all just drive into the city instead of taking the train. It turned out to be a great trip – only two hours – and very easy to get into the city from the NY State Thruway. Dr. Grayson’s office was empty of patients because they are preparing for a two day NAM seminar which takes place Sunday and Monday. Emily will be the grand finale – the baby they perform the surgery on and they have asked us to come in Sunday morning to talk to all the visiting orthodontists and specialists about the NAM from a parent’s perspective (so exciting!)

We’re almost there!

This week’s appointment was exhausting. I got to NYU at 11:30 but wasn’t seen until 1 pm (Wednesdays are hectic because there are a lot of NAM babies and also conferences with the entire cleft team are conducted on Wednesdays). When we finally sat down for Dr. Grayson to work on Emily, Dr. Cutting (the plastic surgeon) showed up with a visiting surgeon who wanted to observe the NAM in action (ha ha). It was really exciting because Dr. Cutting was working side by side with Dr. Grayson and they were figuring out exactly what needed to be done with Emily prior to surgery – in this case, it was pull the tip of her nose down a bit so there’s a more distinctive crease between where the columella ends and the prolabium begins (I think that’s what they said). The little exam room was full of people watching them work.

Dr. Grayson ended up attaching the Stents with the nasal bridge that I’d been dreading so you can’t see her columella when the NAM is in. It makes it more difficult to tape her prolabium too, but we’re getting the hang of it. I’ve already seen an improvement in the direction of the tip of her nose. It no longer points up as much. I wish we’d had the bridge on earlier now. Only 2.5 weeks left before surgery. Ack! Here’s a shot of Emily with the nasal bridge. It sort of looks like a wad of gum just underneath the tip of her nose. She doesn’t seem to mind that it’s there.

Well, after a week off it was back to NYU for Emily’s weekly NAM adjustment. She did really well on the train, hardly cried at all both ways. The only time she got fussy was at NYU right when Dr. Grayson was ready to do the adjustment (of course). Our appointment was at 11:00 am, but we didn’t get seen until around 1:00 and by then Emily was a fuss pot. So I asked if she could have a minute to eat (she won’t eat without the NAM) and, as I suspected, she fell asleep within a few minutes of eating. We only have three more appointments at NYU after today prior to her surgery on October 4th. Our main goal right now is to stretch her columella (the piece of skin between her nostrils) as much as possible, so the adjustment focused on the nasal stents and not the main body of the NAM. Here’s picture of the NAM with the stents so you can see what I’m talking about.

I spoke with Dr. Grayson a bit about volunteering my time to help create a Web site about NYU’s cleft team with lots of information about the NAM. I will follow up with that after we’ve survived the first surgery. I would love to do that.

One excitine note about this blog – Shelley Cohen, the Speech Pathologist on the cleft lip/palate team at NYU is teaching a class to grad students this year and she’s referring them to my blog in her class! (Hello NYU Students!!) Also, they’ve begun referring new parents to this blog which makes me really happy. I welcome any emails with questions or comments (use the link at the left).

We don’t have to go to NYU this week because the republican convention is taking place and the city is all topsy turvy. I have mixed feelings about this. On the one hand, it’s nice to get a break this week. On the other hand, it sort of annoys me that I have a very real need to be in the city (to get my child specialized healthcare), and I have to work around a bunch of rich old men. But onto happier things..

Emily’s new favorite thing is to play with her feet and she has successfully gotten them in her mouth. She woke up twice last night in order to pursue this new pastime (much to my dismay).

course we got a picture of the foot thing.

Emily is a lucky girl. She’s constantly surrounded by her sister and two cousins and she loves it. Yesterday Chloe, who is 4, saw Emily without the NAM in. Chloe has always told me how cute and pretty Emily is – well she looked at her and said, “where is the thing for her mouth?” I told Chloe that Emily took it out (that’s another story) and Chloe looked at her and said, “She looks funny without it. I want you to put it back in.” Isn’t that amazing! The NAM is the norm for Chloe more than the cleft. Kids are just amazing.

Ana, Chloe and Layla sitting on the window sill in Amy’s living room.

We’re taking lots of pictures now with Emily with and without the NAM since her surgery is scheduled for October 4th. Her face will never be the same and in an odd way I’m going to miss her wide smiles and the face she was born with, which I will always consider beautiful.

Emily’s very wide smile without the NAM in – she’s 4.5 months old here