I’ve been so focused on talking about the NAM including all the wonderful work Dr. Grayson and Dr. Brecht did while molding Emily’s face, I’ve been remiss in giving the surgeon his due credit. Dr. Cutting is a brilliant plastic surgeon, and he created a beautiful smile for Emily. We are so very grateful for that.
How gorgeous is she?? Okay, maybe I’m a bit biased.
And here’s that smile we’ve grown so fond of.
Thank you Thank you Thank you!
Today was Emily’s final post-op follow-up at NYU. We had a 12:30 appointment, but weren’t seen until about two because it was just crazy today (Wednesdays are busy because they have cleft conferences all day long and all the NAM babies come in for adjustments). Speaking of NAM babies, I got a great picture of three of them (including Emily). Actually, Colleen Salvato (the tall blonde) got the picture on her camera. Emily is all done with visits to NYU until her palate surgery in April 2005. I’m going to miss the team and the other families I’ve met along the way, but I intend to stay in touch via email. Of course there will be regular blog updates on Emily’s progress as she heals and begins speech therapy locally, but the hurdle of the NAM, the weekly trips, the anxiety about surgery and recovery are all over for now. Shelley asked me what I was going to do with myself now with all the extra time I have – I said I’d work another 10 hours a week!
From left to right, another baby Emily! (in red) with her parents (sorry I do not know their names!), Colleen, me (holding my Emily), Colleen’s husband holding baby Zachary, Shelley Cohen, speech pathologist and feeding specialist, and Dr. Christina Carter holding Jacqueline (the second pumpkin and Zachary’s twin sister)
We brought Emily into NYU on Sunday, October 3rd, the day before her surgery because the hospital hosted a NAM workshop for visiting orthodontists and they wanted some actual patients to come in to answer questions and demonstrate an adjustment (a pseudo-adjustment in Emily’s case since surgery was just 12 hours away.)
Doctors Grayson (top) and Brecht (bottom) were gracious enough to let me photograph them for the blog. Dr. Grayson did about 75% of Emily’s adjustments, but we were lucky enough to see Dr. Brecht about six or seven times as well.
Dr. Christina Carter (left) and Lucy, a technician, with Emily. Dr. Carter is an orthodontic fellow studying the NAM. She has been a tremendous source of support to us.
We spent the night at an apartment across the street from the hospital. Patients can rent this apartment from Forward Face, an organization that assists families who are dealing with children who have craniofacial conditions. Forward Face maintains the apartment so that families who travel to NYU for care have a place to stay after surgery.
A mischievous Emily playing with her feet the night before surgery. This is the last shot of her all taped up.
She’s out for the night and I’m ready to go to sleep. Notice we took the tapes off. It was great to see her cheeks!
One last wide smile before Emily goes in and a shot of her with the surgical nurse. She was really fascinated with the nurse’s mask (she was extremely stoned because they gave her something to relax her prior to giving her anesthesia.) Dr. Carter was with her when she went under and she told me that Emily went very peacefully. She just kicked her legs gently until she fell asleep with one leg up and one leg down. I miss this smile, especially now because she’s been so cranky and irritable.
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
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?)
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.