Another poem

Recently I spoke with someone who had written a letter to their baby prior to going into surgery. I thought that was a great idea, but since I am a poet it is actually easier for me to put my feelings into the form of a poem. I did this last night.

Visualizing Wholeness

I ride the fragile pauses
between deep breaths
into a place
where worry fails
allowing me impossible glimpses
that stretch high above
my heavy realty.
On this magic-carpet ride
I touch your lip
and it draws together
whole, as it was
in my first dream of you.
And I transfer your burden
onto my own face
as any mother would.
The whisper of this vision
must carry me through
until suddenly, I am strong.
Even after the surgeon
works his magic,
even after you wake
in astonished pain
until you smile again
a new smile
and we fly towards wholeness
together.

by Jacqueline Dooley

Countdown to Surgery

And thus the waiting begins. We have eight days until Emily's surgery and we are on "lockdown." No play dates for Ana, no outings for us and all the arrangements are made for the big day. I thought this time would go so slowly because we're basically house bound (we are trying to keep Emily healthy because surgery can be postponed if she gets sick), but it seems the opposite is happening.

We have begun explaining surgery to Ana who is three and doesn't quite get why Emily has to have her lip cut and why she'll be in pain. We've explained to Ana that Emily needs the surgery so her lip can look like ours and so she can eat better. She nods and seems to understand then says, "I don't want Emily to get surgery." She does understand that grandma will be here watching her while we take Emily to the "baby hospital" (To Ana, this is the same strange and mysterious place we went to when Emily was brand new and got to come home with us).


Emily is as happy as ever and very adept with her hands. Even though she wears socks most of the time so she won't take the NAM out, she still manages to take it out and/or get the socks off (I found them both off and above her head this morning in her crib). She doesn't get that skill from me!

Ana, for her part, is an amazing sister. She doesn't seem jealous of Emily although she has a habit of taking her favorite "baby toys" and adding them to her stash of favorite toys (this is an ever-growing heap of toys in one corner of the living room that she refuses to clean up. We call it her hoard). She was diagnosed with Lyme Disease a few days ago and I haven't really had time to panic about it since we caught it early and she's taking the antibiotics with vigorous enthusiasm (it's bubble-gum flavored). Still, I'm concerned about any long-term implications (hmmm, wonder if I should start a Lyme Disease blog?)

NAM Appt #23, Pre-Admission Testing, Arm Restraints and Stress

Jim went into NYU with Emily and I today because we had four appointments including her weekly NAM adjustment. It was a big day focused on preparation for surgery (in less than two weeks!) I'm really glad he came in because it made the whole day more relaxed. Emily seemed really happy too - I mean, she's always happy, but she was all smiles for everyone and didn't cry at all until they drew blood for her pre-admission tests.

First we saw Pat Chibbaro, the feeding specialist and one of the team coordinators to discuss the ins and outs of surgery including how Emily is going to eat after surgery, how to put on the arm restraints (Emily slept through that demonstration) and how surgery day will be structured. We'll arrive at the hospital at 6:30 am and she goes into surgery at 7:30. It's a five hour procedure after which time she'll go straight to recovery and we can join her there. She is on some heavy duty pain killers for the first 24 hours and then it's just Tylenol every four hours unless she is very uncomfortable and then we may try some Tylenol with codeine (that is not recommended though because it can cause airway swelling).

We learned so much today, but I am exhausted. I'll go into more detail about the pre-op stuff and who we met with tomorrow. The NAM adjustment went well and one really great thing that happened today is that Dr. Cutting looked at Emily and said she looks good which means she's all ready for surgery. It seems that all our hard work has paid off and we're in the home stretch.

Just for fun (picture)

It's true that I created this site to reach out to other parents who are dealing with the issues of cleft lip and/or palate as well as people who want to learn more about what's involved with using the NAM. But I also wanted to show parents who are expecting a child with a cleft that these babies are normal, healthy babies in most every way except for the anatomical issues that accompany the cleft itself. Emily is happy, sweet, healthy and a joy to us each day. I had lots of fun folding laundry with her sitting in the circle of my legs. She really enjoyed grabbing all the clothes and trying to stuff them into her mouth (notice she's wearing no NAM - this as just after her bath).


Here's one happy, naked baby enjoying a bit of laundry time

NAM Appt. #22

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.

4 Month Doctor Visit (pictures)

Emily saw her pediatrician on Friday for her routine well-baby check up. She was supposed to go a few weeks ago, but we needed to reschedule, so she's actually nearly five months old. She weighed 15 lbs 14 oz on Friday and is 25.5 inches long. She's in the 75th percentile for weight (amazing!) and 50th for height. She did great with her shots, although by the third one she did turn red from her chin to the top of her head and screamed for a couple of minutes. I would've too. I got some great pictures over the last couple of days.


lots of drool


Ana loves hugging and kissing Emily. She's a great big sister.


Emily is just one of the girls.

NAM Appt. #21

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).

Outgrowing the Sling

Emily is growing so big that I think we're going to have to retire the baby sling pretty soon. The New Native Baby Carrier is the sling I've been using since Emily was born. It's perfect for traveling around with because it folds up so small. It's also very lightweight - great for summer. I did a bunch of research about slings when I was still pregnant because I couldn't imagine going into the city once a week by myself with a newborn in a stroller. The trip to NYU is 3 hours one way door to door for me. Two hours of that commute is on a Metro North train.

Emily still fits in the sling, but it kills my back. This weekend I mostly kept her in the baby Bjorn, but I'm not sure if I want to take the Bjorn into the city when I go to NYU. The main reasons for this are that it's bulky and I have enough stuff (baby included) to lug around all day, but also because Emily sleeps comfortably in the sling on the train a lot. I bought a small stroller for Emily's NYU visits and have been bringing that in along with the sling so I have a place to put her down. It's a pain in the neck getting on and off the train, but it's worth it once I actually get into the city and the walk from Grand Central Station to NYU is nice when it's not sweltering out.

NAM Woes

I just added a post with pictures of Emily's NAM - check it out. I put this post back in May for those people starting from the beginning (mostly new parents just starting out with the NAM.

Emily has been pulling out her NAM a lot since Wednesday (it's now Saturday).At first we thought it was because she was just getting more adept at using her hands and the NAM was the most accessible "toy" she had, but now I'm wondering if it's because it's uncomfortable. We haven't been to NYU since last Wednesday which is a long time to go between adjustments.
I called Dr. Grayson's office yesterday and whoever I spoke with said she didn't think it was the NAM not fitting right because there were no irritations and Emily wasn't cranky. Of course right after I got off the phone with her Emily got irritable and really started rubbing her nose on her left side. She also screams and cries a lot more than usual when we put the NAM in, so I'm thinking something's up. I'll see what Dr. Grayson says on Tuesday. Until then, I've been putting a smear of Eucerin on the entire surface of the nasal stents to make them slide in easier and she's wearing gloves (poor baby). The Eucerin seems to help.



Emily's favorite toy!

Emily's Tapes (pictures)

Part of the day-to-day management of the NAM involves "making" tapes. The tapes you see on Emily's face here...



...are assembled by yours truly about every other day. I make up a bunch at once and we carry them around with us in a little baggy (like diapers, wipes, formula). She's been going through them quickly lately since she's been taking the NAM out. We're not sure if she may be teething or if she's just getting more nimble with those chubby hands.

There are two types of tapes we have to make - the kind that's on her prolabium (the piece of skin just under her nose) and the longer tapes on her cheeks. We have to attach the tape to teeny red rubberbands (elastics). The third tape you see there labelled "base tape," protects her cheeks from the Steri-Strips. They actually gave us something different at NYU to protect her cheeks, but it was difficult to handle and made her cheeks raw. The base tape she's wearing is stuff I get at CVS. It's called CVS Multi Day Use Regular Bandages (the 10 pack). I brought a box to NYU and now other parents are using it, which makes me happy.

The tapes on her cheeks keep the NAM in place, although originally they pushed her premaxilla (the segment of her upper gums where her first four teeth will come in) into place. Her premaxilla was actually out of her mouth when she was born and now it is in place and lined up with her lateral gums (the gums on either side of her mouth). Here's what the raw materials look like before I cut up the tape and attach it to the rubberbands.




And here's what the tapes look like after I get through with them...



It takes me about a half hour to 45 minutes to make this many tapes up and they can last anywhere from one to three days (depending on how creative she gets with her hands). So that's your lesson on taping! WOO HOO. This can be daunting for first time NAM-ers. Send me an email if you have any questions.

Staying Home (pictures)

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