Thanks, Dr. Cutting

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!

Cleft News Story

Thanks to a post on CleftAdvocate's message board, I found this recent article about baby who used the NAM in Iowa and just had his lip repair done.

The article is very brief and does not mention the NAM by name (it's referred to just once in the article as a "mouthpiece"). A mouthpiece! Ha - that's a severe understatement. Dylan, the little boy in the article, is adorable. The picture of him with his NAM in reminds me so much of Emily. It looks like they taped him up similarly to the way we did it. I wish I could contact the family!

A fun day

Ana and Emily enjoyed a nice visit with my parents today. It was the first time my parents had seen Emily without the tape across her face. My mom said it was like a completely different baby - she felt like she had to get to know her all over again. I know the feeling.


I still can't stop staring at Emily's face.


Ana and Emily had big smiles for grandma and grandpa!

Fun With Hand-me Downs

I finally got a chance to go through the bags of hand-me downs that Emily inherited from her cousins and Ana, and this lovely outfit is the result. All the stuff was piling up in my office/guest room, so I just plopped Emily down on the bed with a string of Ana's plastic beads and went through all of it. I have no idea what purpose the little kerchief thingy serves, but it sure is cute.

She played with those green beeds for over an hour.

Emily's tape is now off of her face for good. It's the first time since she's been born that I've been able to really see her face, since the NAM obscured it for the first five months and then of course we taped her lip for 5 weeks during recovery. Sometimes I look at her now and just don't recognize her at all! I find myself staring at her face and trying to memorize it. Her scar is very prominent in the first picture, above, because she has a cold and her runny nose makes the whole area very red and livid-looking. I'm concerned about the ridge of scar tissue just below her columella since it seems pretty prominent now. We plan to massage the scar starting in a couple of weeks and apply some creme to the area to try to minimize scarring. We won't know what everything will ultimately look like for up to a year, so there's no use fretting about it now. Dr. Cutting really did an amazing job and we are very grateful for everyone at NYU's Cleft team. Which reminds me, it's time to send them another email about doing their Web site (I offered to help them put a Web site up about the NAM and the cleft team at NYU a while ago).

Feeding with a cup

Well, Emily is more than 5 weeks post-op and even though we've been trying to get her back on her bottle for two weeks, she still won't take it and prefers to drink from the Soft Sipps. This is frustrating because the Soft Sipps don't hold as much formula (only 3.5 ounces) and don't seem to be made for long-term use. They fall apart after a while and these are not easy bottles to replace!

So this presents a dilemma. Should we force the issue of her bott - simply refuse to give her the Soft Sipps and force feed her until she learns how to eat with her bottle without the NAM? I asked Shelley, the Feeding specialist at NYU and she thought we'd probably have to do that. Apparently it is very rare that a baby won't take the bottle after surgery. Now, we could force Emily, but she's not going to get her bottle after her Palate surgery in April so we'd be going through the exact same thing all over again! Jim and I don't want to put Emily through that torture, so we've decided to transition her directly to a cup. It has to be a cup without a spout and apparently Gerber makes one like this so I plan to buy one soon, but in the meantime I rigged something up from one of Ana's cups and it seems to be working - it is a cup with a lid and a hole for a straw. I put water in it so far and the cup has a raised rim which Emily seems to like. I have to tip the cup a lot and let a little water dribble into her mouth and she actually drinks it (the Soft Sipp is good for training her how to drink from a cup. So far I've only introduced the cup at meal times to help clean out her palate while she's eating. She often eats a few more spoonfuls after she has some water.

It will be a while before Emily can hold her own cup, but if we can switch her to a cup and get rid of the Soft Sipp, life will be much easier. You can put much more fluid in a cup and of course buy them locally.

Our biggest concern with the bottle is that Emily won't be practicing her sucking, but she seems to love her pacifier so we give that to her all the time. She's starting to hold the pacifier on her own and that's a great step to helping her get to sleep too.

Content Syndication Available

Emily's Story is now a syndicated blog, which means content on this site is now available for re-publication. I've added this image to the template:
which is linked to the XML site feed. Hopefully this means that the content on this site will reach more people and, ultimately help more families.

Solid foods and sleep trouble (pictures)

Okay, so now that surgery is over we have other things to deal with that I didn't even consider a few months ago when the NAM was my whole world. One of them is the sleep issues we're having with Emily, which I mentioned in previous posts. She's not comfortable falling to sleep on her own and she needs us to rock her a lot. I attribute this to the fact that she was moved from her car seat to her crib and back to her car seat after surgery. We also took away comfort items like her bottle, pacifier (and the NAM!) after surgery. Once the three week recovery was over and we were able to take the arm restraints off, we put her back in her crib and she really started having trouble (she also got sick at this time). She was waking up frequently after we put her down for the night, so we tried a few things and her sleeping is starting to get better. First we have her on a schedule now - two naps a day - morning and afternoon. We also put her down for the night at 7 pm (just started that a couple of days ago) instead of 8:30 which I think was too late. We have the humidifier in her room on low all the time, and I made her crib into a very comfy place with things on the sides, a warm fleece blanket and cotton sheets. So she woke up twice last night between 8 pm and 11 pm, but then slept through until about 7 am this morning - not bad!


Emily loves to sit and play, but she's resistent to rolling around on the ground on her back or belly. We did not give her much belly time as a small infant due to the NAM and then surgery.

The other issue we're having is her transition to solid foods. This may be something contributing to her sleep problems too, since the formula definitely doesn't satisfy her anymore. We started on rice cereal which she seems to like, then moved onto apple sauce, then pears and bananas. I recently introduced sweet potatoes, which she loves. The problem is that she can't use her upper lip to keep the food in her mouth, so even though she goes for the food and closes her mouth, it all dribbles out. Shelley Cohen (speech pathologist/feeding specialist) at NYU explained this to me when I called to ask about it. She said to thicken the food with rice cereal which will help Emily keep it in her mouth. I tried that and she didn't like the combination with the sweet potatos, but she doesn't seem to mind it with the fruit. Eating also makes her sneeze, which causes the food to shoot out of her nose in a most exorcist-like fashion. I guess we will keep trying. I want to ask the early intervention speech therapist if there are excercises we can do to help Emily make use of her new top lip.

Halloween, Sleep Woes and Baby Food (pictures)

Emily's first Halloween went well. She was a lamb and Ana, after discarding her princess costume and her cat costume because they were "too itchy," was a bunny.

My little lamb

Lately we've been having a lot of trouble getting Emily to sleep...and to stay asleep without help from us. I think we fell into bad habits because we had to hold her so much after surgery. I can't bear to let her cry it out after she's been through so much, so Jim and I have agreed to be pretty rigid with her schedule so she knows what to expect and can get comfortable with her crib. We did that with Ana and it worked really well. Plus we kept changing things on Emily - first she slept in the car seat, then she didn't. First she had the NAM, now she has an upper lip...you get the picture. I can sort of have a sense of humor about the sleep deprivation we're experiencing now, when it's still sunny out and I've got lots of coffee in my system. But at 3 am when I'm trying to get her back to sleep for the third time in a row, I'm a blubbering mess.

Chloe (Em's cousin) and Emily


The girls from left to right - Layla, Chloe and Ana all in pink and white. Ana assured me that her bunny costume didn't itch.