Lots of Leaves (picture)

This is our first week of no NAM, no surgery, no post-op and no awful stomach flu that tied us to the house and/or our beds. And so life begins anew! Here's a shot of Emily sitting amongst the leaves and looking oh so cute. It's good to see her just be a baby. I can't wait for Sunday - she's going to be a little lamb and I intend to paint her nose black. Of course there will be pictures of that!

We're Done...for now (pictures)

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)

Emily, meet your crib

Emily slept in her car seat for about a month starting with the week prior to surgery and for the three weeks following surgery. The main reason for this was drainage in her nose. Since there was extensive work done, her nose drained a lot (particularly in the first couple of weeks post-op). Keeping her upright helped her to breathe and also helped everything drain out. She was also very uncomfortable lying flat with the arm restraints on, but seemed more relaxed sleeping in the carseat. Now that the restraints are off, we have finally reintroduced her to her crib as of today. At first she was waking up (from naps) a lot, but then I added a bunch of stuff (including the crib bumper) to make it cozier and it seems to have helped tremendously. She took a nice long nap in the crib. I also let her sit up and play in there for a while so she could get to know her crib all over again. Hooray!

Recovery - Day 17 (pictures)

This week has been hard. It's Emily's third week post-op so I thought it would've been a lot easier than the first two weeks, and that may be true in most cases, but Jim got sick and that left it to me to take care of both girls. Ana was still sick up until yesterday and now I have a cold. Jim's still bed-ridden since he got the stomach bug Ana had, so that leaves me with both of them, no time to work and sick myself. Emily seems to be over those boughts of inconsolable crying, for the most part though it is still hard to get her to sleep. She also seems to have caught the stomach thing too, but she's still eating so I'm going to try not to have a nervous breakdown.

Emily is looking all healed, though I know that there is stuff going on in her gums and probably her nose that is still mending. We have the arm restraints on about 80% of the time - always when she sleeps, although she's figured out how to wiggle out of them. We've been letting her go without them for short periods of the time and even suck on her fingers (sorry, Shelley) a bit as long as she's not scratching or working at the surgical area. She leaves it alone and mainly licks her fingers or plays with her bottom gums, so it seems ok. I wonder if she's starting to teethe down there. Four more days and we can finally take the arm restraints off for good! I can't wait. At that time we'll reintroduce Emily to her crib (she's been sleeping in the carseat) and to solid food - I know she's ready for real food. She watches us eat all the time and is drinking more and more formula.


Emily loves to sit up, so I put her in this tall basket and she played for a while. The high sides were perfect since they helped her keep her balance and I put some toys on the handles.



Emily still gets her baths in the sink, but we may switch to the big tub once she's sitting up better. These pictures are from 10/19/04 - she's six months old. Why the white tongue? Who knows - I'll ask her doctor about that tomorrow since she has a regular well baby appointment. She loves to stick that tongue out all the time though. Very cute.

Recovery - Day 11 (pictures)

Emily was fairly happy for most of the day today and even managed a pretty long nap in the afternoon. I took her out to the mall for a couple of hours because Ana is sick with a stomach flu (why should life be easy?) Emily loves being out and about and she managed a few quick naps while were on the road.


Emily is happiest in the morning after a long night's sleep. She is sitting up on her own here with no tape on (it had just fallen off) so I took advantage and snapped a picture.


For those of you that care (and I know you're out there), here's a close up of the repair. Remember, we're not even two weeks post-op so her scar won't be as red and the shape of her nose and lip will change as she heals.


My girls. Ana has a Pedialyte ice pop, the only thing she ate today besides watered down juice. They both look kind of sleepy since it's the end of the day.

Recovery - Day 9

It's still early in the morning nine days post-op and we got our first pictures of Emily without the stitches in. She slept great again last night (from 8:30 pm to 7 am) and woke up happy (I would too after all that sleep). No time to write a long entry because I'm back to work today, but I did want to share these pictures.


She's getting back to her happy self. I'm so glad!


A great example of a "Dr. Cutting" nose. I wish mine was as perky.


A close up of the repair. Keep in mind it's still very red and will change monthly. The wound is still oozing and we need to put saline drops in her nose and keep the area as clean as possible.

Recovery Days 7 & 8

Emily got her stitches out yesterday. They had to strap her down and Jim held her head while I held her legs and surgical resident held her upper body (three adults to hold down a 16 pound baby). It took about 5 minutes and Emily screamed the entire time, but they said she did better than most. She calmed down within a few minutes and then they put some tape across her upper lip which she will need to wear for the next 5 weeks. We don't need to do much with the tape, just replace it when it falls off which is so easy compared with the taping for the NAM it's almost laughable. Emily seems much more relaxed since they taped her lip. Jim and I speculated that she may have missed the ever present tape on her cheeks and feels a bit more secure now.

It's now Tuesday and Emily continues to do much better and seems so much more like her old happy self. She slept 11 hours last night (hooray!!) and has had no boughts of uncontrollable crying, though she did get fussy around 10:30 but calmed down quickly. She didn't nap until 12:30 and then only for about a half hour.


Here's a shot of Emily's short nap from today. You can see the new tape they put on her lip. I can't wait until it falls off so we can get a picture without the stitches.

Recovery - Day Six (Picture)

We ventured out of the house today since we were all going stir crazy. We took Ana and Emily to a pumpkin/apple farm near us. Ana had a blast and Emily did well, though she got cranky when it was time to eat. She prefers that she's sort of nestled in my arm while I feed her and that's hard to do on the road.



Emily was not her usual happy self today. She cried a lot and smiled very little. I miss her happy face.

Recovery - Day Five (pictures)

Emily slept through the night for the second night in a row and woke up with a dry diaper, which was very scary since she didn't eat at first. After I panicked a bit then calmed down she ate about 5 ounces. She did great the rest of the day except for a bought of uncontrolled crying from about 10:30 to 11:30 am (she was trying to get to sleep for a nap and really wanted to suck on something). My parents came for a visit today, which was a fantastic help. Both Ana and Emily loved seeing their grandparents and it was a good break for us to not have to worry about paying constant attention to either one of them.


Saturday morning, 5 days post op. Emily fell asleep on me for about 45 minutes.


Here she is with grandpa - I think I see the resemblance!


The matriarch with her grandkids. Ana is preoccupied with a humongous care bear balloon.


Look at Emily's repair! It almost looks like she just bumped her lip.

Recovery - Day four

Emily did great today, except for a few episodes of uncontrollable crying, mostly when she wanted to go to sleep and really wanted to suck on something. Tonight she figured out that she can sort of suck on the soft sipp tubing just like a bottle and fell asleep to that (I was so thrilled!) This was great because she ate a bunch right before bed. She's still eating much less than usual (I think about 16-18 ounces today), but crying with tears and having wet diapers. Also, she only cooperates on the soft sipp when I'm feeding her - Jim has had no luck. We're not complaining, we're just so happy she's eating again.

Recovery (pictures)

This was our first look at Emily's new face. She's in the recovery room just after surgery. She came out of the anesthesia quite peacefully and they brought her to her room in Pediatrics about an hour after we took this shot. They discharged Emily on Tuesday morning because she'd been eating well and seemed relatively comfortable on just Tylenol every four hours. Unfortunately, she stopped eating when we got home and we needed to bring her back on Tuesday night (much to my dismay). We spent another night in the hospital. Thank god for Shelley Cohen, the speech pathologist on the team. She got Emily to eat so they didn't need to put her on an IV and she taught us how to feed her. We just needed to get more forceful about it and after she took a couple of bottles and had wet diapers all day on Wednesday they let us go.

Here's a couple of pictures from today.





We are still having difficulty getting Emily to eat. She pretty much chokes down every bottle unless she's really hungry. She had about 18 ounces of formula all day today - hopefully she'll eat better tomorrow. More later...

Surgery (many pictures)

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.

NAM Appt. 24 & 25 (pictures)

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!