Emily's Story

WWW.CLEFTSTORIES.COM

2005-07-30T22:09:00.000-04:00

Emily's blog is now located at www.cleftstories.com. I just registered this domain so I can add some more functionality to the blog. From now on, all new posts will be from that domain. Don't forget, www.cleftstories.com. I'll see you there!

Audiology Update

2005-07-29T21:22:00.000-04:00

Emily had a follow-up visit with a local audiologist this past week and the news was good. He said her hearing was perfect, and that her ear canals were three times wider than when we first took her in (about six weeks before she got the tubes put in). At that time he told us that she could not hear well enough to learn to talk. This is a scary thing to hear from an audiologist, but we knew it was only due to fluid and the problem would correct itself when she got the tubes (which it did). Plus the folks at NYU did not want Emily to start with speech until her palate was fixed so she would not develop bad habits. Now she's making many normal sounds and saying a few words ("hi" and "bye" and "mama"). She's doing so well that her speech therapist thinks that she doesn't need therapy anymore! She's going to come in once a month to follow her progress and reevaluate her again as she begins talking more.

She's still a very quiet baby and only babbles when she's around us (Me, Jim and Ana). She seems quite happy to watch the world quietly and, while she's friendly, she does not open up to people that she doesn't know. I guess it's not second nature for her to use language because her hearing was so poor for her entire first year of life. I never realized how important that window of time was for language. I'm just relieved that she's babbling now and starting to form words. She's a silent talker - tends to gesture and use some signs to tell us what she wants. I'm looking forward to hearing more words, but I won't push her.

Well, I had a little fun with all that baby hair. What else am I supposed to do with it??

NYU Reunion

2005-07-25T09:16:00.000-04:00

I got together with a few other families this past weekend. These are people who brought their babies to NYU around the same time as I brought Emily and now the babies are all one and doing great! Pictures say more than words can..

From left to right Sean (18 months), Jackie (13 months), Zachary (13 months), and Emily (15 months). Jackie was not born with a cleft - she's Zachary's twin sister. Michael is missing from this picture which is a total bummer...

Here's Michael helping Emily with her cup. They played very well together.

Zachary's giving the puzzle piece a taste, and Emily is delighted with his ingenuity.

Emily and I in Colleen's pool. It was the perfect day for a swim.

Thanks to Colleen for hosting this party. It was so great to see the babies together and have a chance to talk about the experience with other parents who understand. I hope we make this an annual ritual.

Milestones

2005-07-10T19:55:00.000-04:00

A true multitasker, here's Emily eating a pretzel and waving.

After a cautious start about six weeks ago, Emily has gone from taking 6-7 tentative steps at a time to walking EVERYWHERE. She loves to walk from room to room waving and saying "bye." She's also starting to say new words such as "da da" and "cat." She can make "g" "d" "b" and hard "c" sounds. She still only has four teeth (at nearly 15 months old). I can't wait until more come in. She's making progress at night - sleeping sometimes all the way through, but still wakes up about once a night for a cuddle. She goes to sleep without a fuss now - I just lay her in her crib wide awake, tuck the blankets around her, give her a kiss and her cup with water and leave. It's amazing. She's sucking normally now (I think) - she can empty a cup with a valve in mere minutes, though the valve is slightly augmented. She's really a toddler and has begun throwing tantrums when displeased. It's so hard keeping her royal highness satisfied!

Holiday Blues

2005-07-04T09:03:00.000-04:00

Emily has suffered through another ear infection for this Fourth of July holiday. I'd thought we were done with those since she got tubes put in during her palate surgery in April, but apparently tubes are not a cure-all for infections. We all caught a horrendous cold last week so things have been miserable in general, but Emily seemed really hard hit. She had a fever of over 102 for three days in a row so I took her to the doctor and was shocked when he said her ears were infected. So we've been giving her ear drops for the last couple of days and she's finally doing better - no more fever - and a happier kid.

Here's Emily on the mend after four days of poor sleep and crankiness.

No comment necessary.

Ana may be too big for this toy, don't you think?

Learning new things

2005-06-26T20:56:00.000-04:00

Emily loves to draw, which seems pretty cool considering she's only 14 months old, but she really surprised us when she climbed up on this little chair (belonging to Ana) and started coloring today.

This kid's got more concentration than me.

Emily is doing so many new things. Her speech therapist was so impressed with her progress that she thinks Emily may not need therapy much longer. She has started saying "bye" and waving and she babbles a lot now using both vowels and consonant sounds (a very good sign this soon after palate surgery). I have heard her say "night night" and "catch" and she seems to be trying to say other words such as "again" which was just sort of a "g" noise.

She is climbing and walking a lot more now. Here is my little chubster in a swim diaper (we played outside with Ana and the garden hose). She can climb up and down on that toy without falling (mostly).

Her progress is amazing. Seems she wants to make up for lost time.

Queen of Cups

2005-06-21T21:20:00.000-04:00

Here's the queen holding her cup. This is such a a huge accomplishment for Emily since we basically held her bottle for the entire first year of her life (a bottle we had to squeeze so she'd get the milk). This is the first time she's really had to work on feeding herself, and she's doing a great job. She'll still refuse to hold her own cup, but she's getting more independent with it. She's started having tantrums which are so sad, but she really is learning. She was throwing the cup down if I didn't hold it, so what I started doing is leaving it in front of her when she signs "more" and walking out of the room. She'll inevitably pick it up on her own and start drinking from it if there was no one to hold it for her.

A nice shot of actual lip closure around the spout (trust me on that). Can you see the dimple near her mouth in this picture? That means she's actually getting suction. She can empty a full cup - with the valve slightly augmented - in about a half hour (she puts the cup down and picks it up a lot during this time).

Ana insisted on demonstrating that she, too, can hold her own cup.

Prayers for Zachary

2005-06-19T22:33:00.000-04:00

My friend Colleen has begun the countdown to surgery with her son Zachary (he's in the NAM Gallery) who is scheduled for his palate closure on Tuesday, June 21st. Please send prayers, white light, positive thoughts and positive healing energy out into the universe for little Zachary. Every bit helps. Colleen, you are so strong. I will be thinking of you and Zachary on Tuesday and wishing you well.

Visit Zachary's website to see his gorgeous smile for yourself and sign the guestbook.

Cup Update

2005-06-12T20:20:00.000-04:00

She loves to stick her tongue out, especially if she's looking in the mirror. I wish I was as easily entertained.

Emily's gone seven full days without her soft sipp bottle and I think it's safe to say that we're rid of the thing forever. She's now drinking from the Munchkin Healthflow Big Kid Sippy, even though she's still a little kid. The spout is much wider than a normal sippy cup, and since Emily can already drink from a regular paper cup, she had no trouble drinking from it. In fact, I think it's easier then a smaller sippy spout which requires she purse her lips more.

We give her juice in the Healthflow with a valve, but Jim widened the valve so that she doesn't need as much suction to get the juice out. Still, she needs suction so that means....(drumroll)...she's got suction!! She can't get milk out of this cup with the valve in, I guess because milk is thicker. So we take the valve out for the milk and she does fine. She was on a milk strike over the last couple of days - would only accept the juice from the cup, but once we put milk in the Healthflow (instead of the Gerber cup), she started drinking it again.

She's still not truly walking. She can take 6-7 steps at a time, but she's extremely cautious and will only do it if I'm sitting close to her on the floor. She's started standing up and sitting down by herself though, which is a great sign. She'll just do that over and over again and giggle.

No More Soft Sipp!

2005-06-05T21:33:00.000-04:00

Here's a picture of Em from yesterday. That little outfit is supposed to snap at the bottom, but she's too chubby and it kept unsnapping. Ah well. It's still cute.

Well, we finally did it. We got rid of the soft sipp post op feeder for good. Emily had been drinking milk from these bottles since her lip surgery in October 2004. She initially refused them and we'd had to re-hospitalize her for dehydration. We force fed her for about two days, which was agony, and then she just accepted them.

After the three week post-op period was over (from lip surgery), she continued to use them and absolutely refused her Pigeon bottles. We didn't have the heart to force feed her again so we stuck with the soft sipps until her palate surgery last month. We'd ordered about eight more of the bottles back in October and we were still using them as of YESTERDAY. But they had begun to fall apart. They are not really for long term use.

This is such big news because it really is huge step for Emily towards normalcy. The soft sipp bottles were always a reminder that something was wrong. People always stared at them when we used them. They also only hold about 3.5 ounces and we were forever refilling them. What's she drinking from now? She's using a Gerber Soft Starter cup without the valve now. I think she is able to get some suction, but when we put the valve in she gets extremely frustrated. Overall, the transition to the cup was surprisingly painless. We'd been using the Gerber cups at meal times anyway (for juice) and so she was already familiar with it. This past Saturday she wanted her soft sipp and got pretty cranky, but after her second nap I put her at the table and gave her some gouda cheese, which makes her very thirsty. She glugged the milk from the cup and we haven't looked back since! I'm so proud of her.

Post-Op for palate surgery

2005-06-04T17:26:00.000-04:00

We took Emily to NYU for her post-op checkup from her palate surgery. We'd had to cancel the 3-week post-op visit because she had a pink eye and a cold. She did great! Her palate looks good - the surgical resident who checked her mouth said that it looks like she has no fistula (openings in the repair) and the ENT from the team checked her ear tubes and he said they look perfect. Fistula can be quite common, but the surgeon told me that Emily has less than a 1% chance of developing one now that she's six weeks post op. I guess time will tell.

We took Emily with us to Ana's preschool yesterday for the end-of-season party. She loved this stacking toy so much we may get her one.

Emily's munching on Gouda cheese and cheerios (for your complete breakfast). She loves Gouda - very odd. So did Ana.

We're trying to transition Emily off of the soft sipp post op feeder which she's been using since OCTOBER after her lip repair. She is not a happy baby and it breaks my heart, but the soft sipps are falling apart and you can't buy them anymore. There's some kind of defect. I'm sure I'll be posting more about this transition (probably at 4 am while I'm listening to her cry it out).

First and Fourth Birthday Party (and Emily's Walking)

2005-05-28T21:26:00.000-04:00

Emily started taking steps last week. I mainly held her a couple of feet away from me then let go and she'd sort of walk/stagger/fall into my arms. This is a picture of Emily with her grandma - she let go all on her own then took about 4 steps into grandma's arms. This was during her and Ana's birthday party on May 21st.

A delighted Emily falls into the arms of a very proud grandma.

Here's Ana opening up a present. She had a great time at her and Emily's party and didn't seem to mind sharing the spotlight with her baby sister.

A rare shot of me (blogmistress) holding Emily. Em was very over tired and over stimulated at this point in the day, so I held her while she ate her dinner.

Mealtime Fun

2005-05-24T21:42:00.000-04:00

Here are a few pictures just for fun. I can't get over Emily's perky little nose.

Emily picked up a bagel that Ana discarded (the bite marks are Ana's). She then proceeded to lick, gnaw and slime the thing until I finally put her at the table and fed her.

Ana had to get into the picture, but Emily didn't mind. Neither did he poppy seeds.

Eating a bagel that's as big as your head is serious business.

A visit with friends

2005-05-17T08:45:00.000-04:00

We spent this past Sunday visiting with the Troutmans - Tanyia (mom), Jacqueline (grandmom), Sydney (baby bunny) and Kennedy (big sister). Sydney is six weeks younger than Emily (yes, there's a big size difference) and she was also born with bilateral cleft lip and palate. Sydney wore the NAM prior to her lip repair - she was is being treated in Virginia by Dr. Craig Dufresne (surgeon) and Dr. Maull (orthodontist). But enough cleft stuff - pictures are so much more fun.

Here are the big sisters, bonding. Kennedy is a year older than Ana so of course Ana loved following her around imitating her (just like she does with her older cousin, Chloe).

Ana insisted on spraying suncreen on Kennedy. It took Kennedy five minutes to rub it all in.

A picture of the girls at the end of the visit. I couldn't get a good shot of both of them with their eyes open.

The Troutmans drove for hours for this visit and it was so exciting to see them. We met through Cleftadvocate.org (Tanyia found Emily's picture). I can't wait to get together again. Ana's already asking if Kennedy is coming to her birthday party next weekend. I wish we weren't seperated by five long hours of driving.

Progress

2005-05-11T21:11:00.000-04:00

Ana and Emily in a cardboard box. It was the only way I could get a picture of the two of them.

It has been way too long since my last post, and that's not necessarily a bad thing. Emily's palate surgery was three weeks from yesterday and she is doing great. Aside from getting another cold, which messed with her sleep, she's all healed and making some progress.

She's not walking on her own yet, but she has taken some more steps and she's cruising around the house by holding onto anything and everything. The most astounding progress is with her eating habits. She has eating two full jars of babyfood (carrots and squash) in the last couple of days. She's never had more than a bite or two of strained baby food in one sitting. I now think this was due to the food coming through her nose and also because it was hard for her to move the food back to her throat without a palate.

Another cute picture in the box. They play together a lot now and there are some fights too. It's interesting to see a one-year-old get angry at her sister.

So we'll be starting with speech therapy again next week. We had to postpone the post-op visit which was scheduled for today because Emily has pink eye. Poor Emily. She's always catching something from her sister or her cousins. Once NYU gives us the okay, we'll begin working with her speech therapist to help her start talking and also drink from a cup (although I tried the cup thing today and poor Em got very frustrated).

I'll be updating the blog less often now, probably once a week or so. Thanks to everyone for their well wishes and prayers during this past surgery. It has meant so much to us!

Palate Surgery Recovery - Day 10

2005-04-29T22:37:00.000-04:00

Emily tried Chicken and Stars soup for the first time today. She learned quickly how to drink the soup and eject the stars (those are a few stars on her chin). Oh well. I thought for a few minutes that I'd get actual food into her.

She's doing great 10 day post-op (my how time flies!) and there's almost nothing new to report in terms of her recovery except that she's taken her first unassisted steps over the last two days. This is because I let go for a second when holding her hands and she took a step! Then she fell into my arms and giggled. Now it's a game we play, but I think it's a step in the right direction (pun intended).

She loves bending her arms without the restraints on. Here she is flirting with me (notice I removed the stars from her chin). Except for sleep issues she is pretty much back to herself. We even took her to the park today.

Palate Surgery Recovery - Day 8

2005-04-28T09:13:00.000-04:00

Emily had her one year well-baby visit today. She did very well. Her ears were all clear for the first time in months - I nearly burst into tears when Dr. Smith, Emily's pediatrician, told me that. She's lost a couple of pounds and was at 21.8 lbs (she was close to 24 before the surgery). She's also grown taller and is now 29 inches tall. She's right in the middle in terms of percentile - 50th for height and weight.

She got two shots and did very well. She didn't even cry for the first one and she only cried a couple of minutes for the second one. I guess she's gotten quite a thick skin after all the medical stuff she's been through. We gave her Benedryl only once yesterday (day 8 post-op) and that was right before bed. I didn't give her any Tylenol at bedtime and she slept very well, almost like normal. It may be because we put the humidifier on in her room (she's been stuffy and I don't know if it's left over from her cold or drainage in her nose from surgery).

Let's not forget Ana - such a great big sister. She's started telling everyone how cute Emily is (isn't my sister so cute?). I dressed her up all pretty-like for school this morning and made her pose for me.

Palate Surgery Recovery - Day 7

2005-04-26T16:34:00.000-04:00

This is actually from yesterday (recovery day 6), and Emily is playing with her bristol blocks which she loves. She was off the tylenol for the first time yesterday and she did great, but she had a rough time sleeping last night due to the arm restraints. We've been keeping them off during the day, but waching her closely. She had been keeping her hands out of her mouth but now that is changing and the arm restraints are a more permanent fixture.

I don't know what's going on here, but it sure is cute. She's just woken up from a nap and I took the restraints off, so I think she's just experimenting with the freedom of bending those elbows. I think she's feeling a lot better - it's day two without the tylenol (recovery day 7) and she's really trying to put things in her mouth which makes me think the pain is all but gone. I played with her on the floor for a while and then had to put the restraints back on because she kept trying to put things in her mouth.

It's not a baby-related blog unless there's a corny shot of the kid wearing sunglasses. So here's Emily in her sister's glasses. This is a few minutes after the above pictures, so 7 days post-op. Note the pink tongue. Emily has had a problem with her tongue being coated and white for months. Jim's using acidophilus in her milk so maybe that's helping. Maybe it's her new palate. Could be a combination of both.

Palate Surgery Recovery - Day 4

2005-04-23T20:30:00.000-04:00

Emily seems to have turned a corner as of this morning. Jim had a bad moment with her last night when she woke up crying and making an odd sound in her throat. He said she was spitting too. He figured she was itchy and gave her some medicine (not Benedryl - something the doctor prescribed) and put her back to bed. She then slept from 11 pm to 7 am and I got her in the morning. Her diaper was dry, but she was very thirsty. She proceeded to drink about 6 ounces in the morning (1.5 ounces before I gave her any tylenol) and all day long she's been eating and drinking at a pretty good clip. For those of you who want some feeding ideas after palate surgery, here's a few of the things Emily is tolerating:

1) Watered down white grape juice (1/3 juice 1/3 water)
2) Whole milk in a cup
3) Chicken Broth from a regular spoon (turn the spoon sideways so it doesn't go inside the mouth)
4) Bologna (I kid you not) break it up into tiny pieces and make sure it's soft. Oscar Meyer is perfect.
5) Gerber meat sticks (we've been cutting them up and peeling off the skin)

Other ideas include ice cream, yogurt drinks or plain yogurt, pediasure, sherbert and mashed avacadoes. She hasn't touched any of that stuff, but we keep trying.

She's very happy today (see above picture - hehe). We're going to give her Benedryl before bed for the next few days because we're not sure if she's itchy or what but she's making that odd noise in her throat again tonight. I got her out of bed (she was crying) and gave her Benedryl and now I have a few minutes to update the blog while the medicine kicks in. It's so good to see her happy and nearly back to normal.

Pictures from the big day

2005-04-22T20:55:00.000-04:00

I gave Emily a bath in our room at Greenburg Hall (the dorm across the street from NYU - they have rooms that patient's families can rent and stay in if they want to be nearby). This is the night before her surgery. She loves to play with the running water, so I let her sit in the empty tub and play with the water for a while.

Jim's holding Emily in the waiting room right before they took us in to prepare her for surgery. It's about 7:00 am and she hasn't eaten yet, but she was very good.

I'm wearing a paper jumpsuit and Emily is all ready to go in for her surgery. She's been given something to relax her, and boy she was relaxed. She went into surgery moments after this picture was taken.

This is the day after surgery and Emily is still pretty swollen. She was discharged the next morning and we've been trying to get her to eat ever since. She's slowly taking in more food and fluid, but it's a constant source of worry.

Here's poor Ana looking very sad. She doesn't fully understand what's happening - just that Emily is taking a lot of mommy's attention and that she has a "little bit of surgery" on her face. We're going to make it up to her next week by taking her for a pony ride.

Palate Surgery Update & Recovery Day 1

2005-04-20T21:15:00.000-04:00

Well, the surgery was still on even though she had a cold an an ear infection, so that was a relief.

She did really well in the morning and didn't cry like I thought she would when I didn't feed her. She signed "more" a couple of times - a word she uses when she wants milk or juice, but I managed to distract her until they gave her the baby valium or whatever it is that makes them stoned before surgery. She went in at 7:30 and I walked her into the OR and watched her fall asleep. She went down peacefully and that was a relief, but oh it was hard to leave her.

The surgery went smoothly and took about 4 hours. She was sitting up in recovery when I got there and crying, but was not inconsolable. Her pain seems managable on just plain old tylenol. She ate a whopping 7 ounces of apple juice a few hours after we got to the pediatric floor and then proceeded to have diarrhea for the next few hours (oopsie). She didn't eat all night, but was on i.v. fluids. They discharged her at about 9 am and she still hadn't been eating or drinking, but we forced some watered down juice at about 3 pm and she had 3.5 ounces. After that she's been accepting watered down juice (grape juice) from a cup at an astonishing rate. I mean she's guzzling it.

What's amazing to me is that she seems so much herself already, the day after surgery. I mean, she doesn't want formula but I think she's just extremely thirsty and the juice is refreshing. I took the arm restraints off and let her crawl a bit and she was so happy - playing and stuff. She's trying to put things in her mouth already! I couldn't believe it - so back on with the restraints. She's drinking from a paper cup as though she's not in any pain.

So we'll see how the night goes, but she's wetting diapers even if she's not getting much actual food. She's a healthy 23 pounds, so I'm not worried about her wasting away or anything. I guess we'll try some different fluids tomorrow and I'll have some pictures from the last couple of days.

Fear

2005-04-17T11:41:00.000-04:00

Here it is two days before surgery and I'm back in this place, this awful frame of mind that I was so glad to be rid of six months ago. I've tried hard not to lapse into self-pity and negativity throughout this blog. This is, after all, Emily's problem and not mine. I wasn't born with the cleft. I didn't have to wear the NAM. I didn't wake up, bleary and in pain, wondering why my mouth had suddenly changed. This is primarily a story of optimism. Emily is happy. She is healthy. She'll be ok.

But as a parent, it's so hard to see your child suffer and I'm afraid. I fear the look in her eyes when she wakes up in recovery, with arm restraints on and blood dripping down her cheek. I'm terrified of the crying that I won't be able to stop. The kind that comes at 3 am, in a pediatric hospital room with an i.v. connected to her foot, a panel of blinking lights and buttons and the broken breathing of other anxious parents just trying to make it through until morning.

I hate that I can't take her place in that bed. I hate that she'll never understand, not ever, how hard it's going to be for me to hold her and not be able to soothe the hurt. Will she ever trust me again? And I fear the improbable. That tiny chance that she'll never wake up from anesthesia. That the trip to the operating room, with her in my arms, will be the last time I feel her warm and alive.

No, this isn't a life and death procedure. But for me it's as huge as the sky, as impossible to climb as Mount Everest, as heart breaking as losing my own soul. There's nothing I can do but be strong for her, but I'm only human and this is my most desperate hour.

Not So Happy 1st Birthday

2005-04-16T08:21:00.000-04:00

Well, as I'd suspected, Emily had an ear infection. I took her to the doctor on the 13th and she had an acute infection in her right ear. As far as I can tell, "acute" means really bad. Dr. Smith, her pediatrician, said the ear was very red and filled with thick fluid, etc. etc. So she's back on Omnicef, a potent antibiotic. I didn't know it at the time, but the ear infection was a precursor to the WORLD'S WORST COLD.

Yesterday was her birthday and I didn't post because Emily needed a lot of attention. The cold hit her hard on Wednesday night. She was up half the night with Jim and at 3 am, I took her. I gave her Benadryl and she finally fell asleep at 4:30 and slept through until 8:30. She was very congested all day long with a mild fever of about 100. If you're wondering what this means for her surgery on Tuesday, well, it could mean postponement. However, since it's not a high fever and she's not coughing (which means it hasn't moved into her lungs), she may be fine for surgery. NYU told me to bring her in and she'll be evaluated the day of surgery. Keep your fingers crossed. Postponement will be hard on all of us. We just want to get this over with and get on with the next year which will be blissfully surgery free.

Here's a picture of her from this morning, playing with Ana's keyboard. She slept much better last night. We put her down around 7:30 pm and she woke up only once at 9:30 pm and then went back to sleep right away until 6:00 am. She looks awful this morning, but her fever was down to 99.7 and she played on her own for a while (she wouldn't let us put her down yesterday). She's back upstairs napping (hopefully). I put her down earlier than usual because she looks so sick (red, watery eyes, puffy nose). I hope to see her improve as Tuesday gets closer and closer.

Ouch, Ma!

2005-04-13T10:13:00.000-04:00

It looks like Emily has another ear infection. Here's a classic sign - rubbing at the ear with that "It hurts, ma" look on her face.

Emily's birthday is in two days and her surgery is in six days, so we'd hoped she'd stay healthy long enough to enjoy the former and get through the latter. Apparently her ears didn't get the memo. She seems to have a cold - the first sign of that was lots of crying at bed time. I think the reason she cries when we put her down to sleep is that the pressure in her ears really hurts when she lays flat. Normally this pressure is tolerable, but when she has a cold she gets a lot of fluid and it becomes painful. An infection can cause pain too, I'm sure. I'm taking her to the doctor today (sigh). They know me by my first name there, and it's a busy pediatric practice.

I hope that the infection won't compromise her surgery. She really needs those tubes. I know she'll be a lot happier without the constant stuffy ears. Hopefully it will give her the confidence to take a few unassisted steps.

I call this Emily's "burglar" walk. She cases the inside of the house by holding onto the wall and moving around all over the place. I believe she's quite capable of walking unassisted, but she lacks the confidence (fluid in her ears can throw off her balance, which is precarious anyway since she's just learning to walk). She gets around pretty good like this, but I know she'll be a much happier baby when she's finally walking on her own.

The countdown to surgery has begun, so I'll be posting much more frequently. Please say a prayer or send out a positive thought or two for Emily to help her (and us) get through the next week. Surgery is Tuesday April 19th at 7:30 am.

Some Close Ups

2005-04-07T10:34:00.000-04:00

What's a little drool among friends?

Can she get any cuter?

Yes, she can!

I have arrived in Myrtle Beach at the American Cleft Palate-Craniofacial Association's 62nd Annual Meeting. I'm here without Emily (I miss her!) to discuss the NAM from a parent's perspective. I'm here with the NYU team and it is truly an honor to see them interact and hang out with them outside the hospital setting. They are so dedicated.

I will be sitting with the team during their presentation from 4-6pm (or so) this afternoon. It's amazing to see so many professionals gathered together in one place to talk about clefts and other craniofacial disorders. It can be such a lonely road for parents dealing with cleft lip (and other craniofacial issues). I am awed to see so many people in one place who know so much about it. I'm also so thankful for these professionals who have dedicated their lives and careers to helping people like Emily.

I am really looking forward to the talks. More Later!

Crawling and (almost) Walking

2005-04-03T17:19:00.000-04:00

Here's my little supermodel posing for the camera. She's quite the looker if you like chubby ankles and dimpled fingers (which I do)...

Emily crawls like a champ these days. She's only been crawling for about a month, but to look at her you'd think she'd been at it for much longer. She's also pulling up on anything and everything - a skill she aquired only two or three weeks ago and has been perfecting. If you're thinking it's pretty late for an almost one-year-old to just start pulling up, crawling and walking (she creeps around furniture), you're right. Emily is late with all of that. The surgery threw her off and the subsequent three weeks in arm restraints, but I think the lack of tummy time really delayed Emily's mobility. We didn't do it on purpose, but we kept her off her belly because we wanted to protect her from bumping her face while she wore the NAM. I also tended to carry her a lot - the mother bear instinct, I guess.

It's a relief to see Emily moving around and catching up developmentally. My advice to you (and I just spoke with another mom today whose baby is wearing the NAM) is try not to worry about it. If you can enroll your baby in Early Intervention and have them followed by a physical or occupational therapist, then that will put your mind at ease. Meanwhile, understand that our babies have a lot to overcome - surgery, hospitalization, arm restraints...lots of change. So cut your baby some slack and just take it a day at a time. I'm not saying to ignore red flags or anything, just work with your baby as much as possible and try to relax about it if he or she seems to be lagging behind the other babies in the crowd.

A funny thing happened when we brought Emily out into the sun the other day, her hair turned red. Do you see it?? There's more red than brown in this picture. I hope the color stays.

Pre-admissions Testing for Palate Surgery

2005-03-31T08:21:00.000-05:00

We took Emily to NYU yesterday for the pre-admissions whirlwind which included interviews with the anesthesiologist, surgeon (in Em's case, a surgical resident), pediatric physician's assistant (I think), lab technician who took her blood, cleft team nurse practitioner and the team ENT.

A laughing Emily the day before our trip to NYU (don't worry, she's still laughing even after the long day)

We got to NYU 20 minutes late to our 11:00 appointment at pre-admissions and had to wait until 1:00 to be seen (we got stuck in traffic on the FDR). Ana was with us because our babysitting plans fell through. To make long story short, my mother got into a car accident on the way to babysit (the night before - she was going to sleep over). She's fine, but the car flipped and rolled into a ditch and it's not fine. So Ana came along for our very long day. There's a park right in the NYU complex so Jim took Ana there (where she proceeded to get filthy) while I waited with Emily.

After some confusion about where we should be after we missed our appointment, I wolfed down a 5 minute lunch and Emily went through most of her appointments including getting blood drawn, which turned out to be much less of a big deal than I thought it would be. They need to take less blood for the palate surgery than for the lip, so it really only took a couple of minutes and it was from her finger tip. She weighs about 24 pounds! I think it's more like 22-23 because she was fully dressed and wearing her diaper and she's almost 29 inches long.

I met another family in the waiting room for pre-admissions testing. They've seen Emily's blog and I gave them a Soft Sipp. Their baby is having lip surgery next week and he didn't need to use the NAM because his cleft is a unilateral incomplete. He will look great (he's already beautiful).

Ana had meltdown about 3:30 when the ENT was checking out Emily's ears. Emily was a trooper, she actually fell asleep on my lap while Dr. Bernstein, the team ENT, peered into her ears and confirmed the need for tubes. He also confirmed a few suspicions that I'd had about fluid in the ears such as compromising her balance (she seems a bit wobbly when walking while holding onto things), causing discomfort when laying down (she still wakes up at night) and causing loss of appetite (she's big, but it's mostly from all the formula not solids). It bodes further research. I can't believe I've never looked into side effects of fluid. I guess I was so focused on the cleft itself that it never occurred to me.

This post is getting long...I will follow-up with an update soon.

Ear Update

2005-03-23T21:32:00.000-05:00

Emily's been on the latest course of antibiotics for 8 days and she seems to be doing better. She saw an audiologist on Monday and she can hear well, although she does have some loss of hearing which is due to "stuffy ears" (fluid in her ears). He said her ears weren't infected, which was a huge relief. She has enough hearing loss (I think it's in the 25-35 decibal range) to prevent her from speaking, which is kind of ideal because we don't really want to encourage her speech until after palate surgery. She vocalizes very well which is an indication that she can hear. He felt that once her tubes were in the issues with hearing will go away altogether. Good news!

We are taking Emily to NYU next week for her pre-admissions testing. We'll also meet with the nurse practioner on the team to get information about the surgery and arm restraints (ug). Still, I'm looking forward to seeing the team again.

And speaking of hanging out with the team, I will be attending the American Cleft Palate-Craniofacial Association (ACPA) 2005 Annual Meeting in Myrtle Beach, NC with the NYU team the first week of April. I was asked by the team to attend with them to speak about the NAM from a parent's perspective. The entire team will be presenting and I'll only have a few minutes to talk, but it is a huge honor. They will show this blog at the seminar!! I'm so excited.

NAM Gallery!

2005-03-21T21:43:00.000-05:00

I've started a gallery of babies who used the NAM. Thanks to the moms who sent me pictures of their gorgeous smiling kids. They are all inspiring.

Visit the Gallery!

Ear Trouble

2005-03-17T07:08:00.000-05:00

Emily was seen by her pediatrician yesterday as a follow up to her last ear infection. She was on antibiotics for 10 days and we waited a full 10 days for the follow up visit to be sure the infection was gone. Well, it wasn't. Both ears are filled with thick fluid and the eardrums are bulging. I feel so bad for Emily. This is one of the common issues with babies who have a cleft palate - chronic ear infections. We knew about it when I was still pregnant and I worried then, but Em was free and clear for the first four months and I'd hoped to dodge that bullet with her. Ah well.

Here she is in pre-crawling mode. She's thinking about it...will she do it??

Houston, we have lift off!!!

So back to the ear stuff. She's on antibiotics AGAIN for the next 10 days. The team ENT at NYU will look in her ears on the 30th - the same day she's got all the pre-op stuff. I just made an appointment for a hearing test which unfortunately won't get done until April 14th because I waited so long to schedule it (I originally thought they'd be doing it at NYU and then waited to long to set it up once I learned they weren't). Bad me!!! ug. The ENT at NYU will want to look at the results of the hearing test before he can recommend tubes, but at least he'll get a look in Emily's ears on the 30th and he'll have the results before her palate surgery, so I hope there won't be a delay with that. I really hope the tubes will solve this chronic fluid and infection problem and my baby will start to hear normally. More later...

Photo Progression of Treatment with the NAM

2005-03-12T23:15:00.000-05:00

I have added a collection of photos that demonstrate Emily's treatment and progress with the NAM as it molded her face each week prior to surgery. I pre-dated this collection of photos back to February 2004. There is a direct link at the top of the page or you can click here to see pictures of Emily from birth until her surgery in October.

11 months old

2005-03-09T10:18:00.000-05:00

Emily will be 11 months old next week. It seems like she's changing every day and turning into a toddler right in front of us. She can crawl FINALLY. She started really moving last week while I was away in Florida (of course I missed it). She also cut two teeth on the bottom last week even though I told her not to cut any teeth while I was away. Her fourth ear infection seems to be resolved. At least, she finished the antibiotics and hasn't seemed uncomfortable. She'll go for yet another follow up next week to be sure her ears are clear. Emily has an appointment at NYU at the end of the month to get a hearing test and do the pre-operative testing for her palate surgery. I'm looking forward to seeing the team again, but I am dreading the pre-op stuff because it means they'll need to take blood. I had to hold her down for 15 minutes while they squeezed four vials of blood from her finger for her lip surgery. It brings tears to my eyes just thinking about it. Palate surgery is April 19th at 7:30 am. We've all begun holding our collective breath and mentally preparing for this next step in Emily's journey towards wholeness.

This is a classic Emily pose. She's sitting in front of the t.v. and I had to make all sorts of strange noises to get her to look at me so I could snap her picture. She sits with her legs crossed all the time like a little adult.

Here she is cracking up because Ana's rolling around with her in her toy area (the foot in front of Emily is Ana's). They play together a lot. Ana told me that Emily's going to be talking to her soon (I think she's looking forward to having Emily as a constant playmate). Notice the very chubby knee. Emily has cleared 21 pounds and feels heavier every day!

Ear infection #4 (sigh), first words...

2005-02-28T21:35:00.000-05:00

The last two weeks have been hectic. Both Ana and Emily got sick with a bad cold. Emily's cold turned into yet ANOTHER ear infection, right on the tail of the last one. This time it was a double infection and she was clearly miserable with a fever of 101.9 and pain in her ear. Ana had a sinus infection which didn't slow her down (much) but she looked awful. Both girls are still on antibiotics, but Emily is done with hers tomorrow. She seems much better. At least, no fever, but she still bats at her ears a little and I'm worried the infection is hanging on. She's still congested so that is probably keeping her ears somewhat full of fluid. She'll get tubes during her palate surgery in April. Until then, we'll just watch her closely.

This is Emily's new friend, Lily. They sat next to each other at Chloe's birthday lunch (Chloe is Emily's cousin who just turned 5). They held hands for a while. I actually had to pry Emily's hand off of Lily's.

Lily decided she would feed Emily. Em didn't mind.

Emily is now saying "mama" on a regular basis. This is nothing new, but she's added a few more words to the list. She's trying to say "dada" (she can't make a hard "d" sound without a palate, but she's compensating by curling her tongue up over her top lip and saying "lala"), she's said "Ana" a couple of times and I think she may have tried to say "Amy" which sounded like "Ah-mah." Course, I may just be reaching on that last one!

Some new firsts

2005-02-15T20:46:00.000-05:00

Emily is delighted to have stumbled upon Ana's pony. It's as though she knows she's not supposed to have it.

The coast is clear - time to see what this pony tastes like.

This is such a fun age. Emily is changing daily it seems. She got her first tooth last week. It popped through her premaxilla (the part of her gums where the first four teeth come in) on her left side. It seems fairly stable so far, but since it's so close to the cleft I worry that it'll just fall out. She's also started sitting up in her crib which is way cute in the morning and after her naps. She's moving around more, though she's not as mobile as I know she wants to be. She can creep along on her butt by pushing herself with her hands and she can also crawl backwards. She can stand for a couple of seconds unsupported, but seems reluctant to creep around furniture or toys (she'll stand and hold on forever though). She signed the word "more" for the first time this week and she says "mama" quite deliberately when I walk into the room.

When did my baby become a toddler??

I couldn't resist including this picture of Ana. I gush about Emily so much (this is, after all, her story), but I had to show off Ana's new haircut which I butchered quite nicely. I did manage to pin her down and snip that stray piece before we went out in public.

Who's out there?

2005-02-08T22:07:00.000-05:00

Emily's just updating her blog in this picture. Do you visit her blog from time to time? She was wondering if you could post a comment to let her know you're out there thinking of her. She got this idea from Rachel's blog. She'd love to hear from you - just click on "comments" right below any post to leave a comment about yourself and say hello to little Miss Em.

Down Time

2005-02-05T18:40:00.000-05:00

The question is not whether to eat the cracker. The question is whether to like the cracker.

Emily is doing well. Today is the last day of her antiobiotic for the ear infection and we take her back to the doctor for a follow-up next week. I hope the infection is gone. She hates taking her medicine and it upsets her stomach. Her sleep's been a bit odd lately and I hope it's not because of her ears.

Here's a neat trick - she's got her top lip over her bottom lip, something remarkable considering she had very little mobility in the lip a couple of months ago. She's doing this more and more. She's drinking from a cup and I think this has helped her practice using her top lip. I make the same face back at her and she tries to imitate me.

Ana and Emily are watching Boo Bah together. I love this picture. It shows how Ana thinks of Emily as another kid like herself. I honestly don't think she sees her as a baby - she hangs out with her and tries to play with her and then gets mad when Emily grabs her face and tries to suck on her nose.

She learned how to clap!

2005-01-26T21:08:00.000-05:00

Emily stumbled upon the art of clapping today. She was very excited about the whole thing and proceded to give herself a huge round of applause.

The hands come up for air and prepare to clap again.

It's always cute when you put a baby in a laundry basket. Really, it is.

9 Month Checkup & Ear Infection

2005-01-26T06:57:00.000-05:00

Emily had her nine month well-baby checkup yesterday. She's doing great except she's got ear infection #3. I'd taken her in a few days ago to get her ears checked because she started waking up a lot at night and her nose was running. At that time the doctor (not her regular physician) said her ear was inflamed but not infected so he wanted me to wait before putting her on an antibiotic. Her cold got worse after that and I guess that's why the ear got infected. She seems happy though and not in any pain and she started the antibiotic yesterday. Now for the good stuff.

Emily weighs 20 lbs 3 oz. and is in the 75th percentile for weight and head circumference and 50th for height. She's on target with everything cognitively (bangs toys together, makes eye contact, turns her head when you call her name, says "mama"). She's a bit behind with mobility, but I think she just wants to walk and is not interested in crawling. She loves to stand on her own too.

Here she is standing on her own with the help of one of her toys. Don't be fooled, she's not really ready to do this without supervision. She fell backward about 30 seconds after I snapped this shot and hit her head on the rug.

Sweet Potato Face

2005-01-21T22:24:00.000-05:00

This is one happy kid. She's eating more and more at mealtime ever since the speech therapist gave us some great tips such as:

Sit with her for 45 minutes to an hour for EACH meal.

Don't be control freaks - let her hold the spoon, make a mess, and drink her formula when she wants.

Make it fun. Let her play with toys, give her lots of choices - different textures, colors and temperatures.

I try to stay relaxed and not rush Emily while she eats. I sit and talk with her and sometimes I read a book. I feed her cheerios (her favorite!) in between bites of baby food and I always have both juice and milk nearby so she gets practice with the cup, but can have her milk if she wants. Lots of times she'll drink some formula and then start eating solids again. I also give her toys whenever I get up and leave the table to keep her occupied and I always end with a Gerber teething cookie (another favorite). The side effect of all this table time is lots of Emily time. Ana likes to sit at her table and draw while Emily eats and it's just a very laid back, content time for all of us.

Little Girls, Little Girls...

2005-01-21T22:20:00.000-05:00

Here are a few pictures to share. Emily's just one of the girls.

Ana loves her "baby" Emily.

Chloe and Emily hold hands.

Layla gets a turn to sit with her cousin.

Me Love Cookie!!

2005-01-15T08:14:00.000-05:00

Here's Emily with her favorite toy - a talking Cookie Monster. I'd let her sleep with the thing if it didn't say things like, "Me Love Cookie!" and "Me Love to Giggle - Ha Ha Ha Ha!" every time you close its mouth.

I've debated posting things like this - things completely unrelated to the NAM or clefts or her treatment. But I think it's important to demonstrate that the time between surgeries and whatever other issues (speech therapy, eating, etc.) is just normal baby/kid family time. It's a time to enjoy our babies and children as they grow, learn and play just like any other child. I'm sure that as we approach Emily's palate surgery in April, this blog will become dominated with posts about the preparation and subsequent outcome of that experience, but until then she's just a baby who is nearing toddlerhood. A year ago I never would've imagined that her issues with the cleft would not be all-consuming all the time. Looking at her now, it's hard to believe I ever felt that way.

Lots of Pictures

2005-01-09T22:00:00.000-05:00

Good morning, Em. Actually this shot was taken right after a 2.5 hour morning nap (the third one this week). She was very chipper considering the room was dark and I walked in flashing the camera at her.

I got in a little closer so I could get that fluff of hair. I can't believe how big she's getting. Her speech therapist said she's acting like a one-year-old. My baby!

Here's a good shot of her scar which looked really good today. Her nose is also "settling" into a nice shape. We massage the scar every day (some days I'm lucky to get a couple of minutes in) and apply Creme de la Mer to reduce the redness. Her lip is softening up, but her nose still feels really hard. Jim thinks we should massage it, but she doesn't even like when I wipe it!

We had a breakthrough today at mealtime (this picture doesn't demonstrate it though). Here she is after refusing a yummy breakfast of chocolate pudding, cheerios and meat sticks (don't ask). Jim reminded me that chocolate isn't such a good thing for a baby to eat due to the caffeine. oops.

Okay, here's the breakthrough shot. I sat Emily down for dinner rather late today (around 6:45 pm) because she'd had a bottle at 5. I didn't expect much. Before today, she's never had more than 3 or 4 spoons of baby food, but her speech therapist paid us a visit on Thursday and gave us LOTS of ideas to try. So I tried them all: lots of variety, different temperature foods, different textured foods, pile the food in front of her and let her play with it, give her toys at the table, put her cheerios in the growing mound of mush (that works surprising well, actually). What finally did it today was that I thickened her food a lot (spinach and potatoes) and scooped it up with one of those toy links and then used that as if it were a spoon. She ate it! She ate the entire bowl!! Then she drank a full cup of juice! Okay, she wore half the juice, but still!! I was so amazed. Maybe now she won't wake up for the 1:00 am feeding. I hope this wasn't a fluke and we have some success tomorrow.

Happy New Year

2005-01-04T08:21:00.000-05:00

"Hello, and welcome to my blog! I am Emily and my grandma gave me this fluffy pink hat. Okay, I'm ready to take the hat off now."

We have no grand news or updates on Emily. She's making progress with sleeping and generally sleeps about 11 hours at night and wakes up about once per night to eat. The nightly wakings only take about 10 minutes and she's right back down again. This is definitely better than ever. We suspect she just went through (or is going through) a growth spurt since she had a marathon nap yesterday and has been eating more formula than usual. Still not much progress with getting her to eat solids, though if I sing, make funny noises and stand on my head while belting out the National Anthem she'll generally take two or three spoonfuls of baby food before returning to her pile of cheerios.

Emily is happily gumming a plastic hand she got as a stocking stuffer. We got her lots of different teethers at the suggestion of her speech therapist so she could get more comfortable with putting things in her mouth again. She's still not crawling, though she's starting to sort of scooch over on her butt (only if she's REALLY motivated) and she can roll like a champ. She's quite capable of rolling around as a means to get from point A to point B, but she doesn't do this unless I get down on the floor with her. Her favorite thing to do is to hold onto furniture and stand. I wouldn't be surprised if she skips the crawling thing completely and begins creeping around furniture first.

Tsunami Relief

2004-12-29T09:25:00.000-05:00

I want to veer off topic to express my sorrow for those many, many families who have suffered due to the recent South Asia earthquake. I have donated what I can afford and compiled the following list of resources for those of you that have the means to donate. I am sending thoughts of healing and well wishes to all families effected by this tragedy.

Please Help The Tsunami Victims

American
Red Cross (via Amazon)

American Red
Cross

Unicef

CARE

Oxfam

More
Sites At CNN.com

A good meal

2004-12-27T17:35:00.000-05:00

Emily's waxing thoughtful in this shot of her right before dinner. She ate a ton of cheerios and we were very happy until she choked on one and threw everything up. Oh well. She seemed fine, but Jim and I got a good scare.

Emily's First Christmas

2004-12-26T07:42:00.000-05:00

We spent the day at Aunt Amy's house and Emily had a blast.

Emily did very well eating sweet potatoes at Amy's house. Maybe it was the festive atmostphere or the fact that I was more relaxed when feeding her, but she ate like 9 spoons of food and drank lots of water from her cup.

It's Christmas morning and Ana is still asleep, so Emily took the opportunity to swipe Ana's Sponge Bob toy for a while. Ana relieved her of the toy when she woke up an hour later.

We spent all day at Amy's so we had to improvise with naptime. Here's a shot of Emily fast asleep in Amy's walk-in closet (she's the bit of pink between the white pillows). We put a blanket down, some pillows and set up her musical crib toy and she did just fine.

Happy Chanukmas!

2004-12-15T08:00:00.000-05:00

We celebrate both Christmas and Chanukah here at the Dooley household. And here's the picture I chose for our holiday Chanukmas cards! Happy Holidays to all!!

Signing, Eating and Ear Infection #2

2004-12-14T10:37:00.000-05:00

We've been busy the last couple of weeks with Emily's second ear infection (Ana got sick with an upper respiratory infection too), teaching Emily how to get to sleep and trying to get this kid to eat from a spoon. Shelley, the team coordinator at NYU, informed me that two ear infection means she's got a history now and that she will probably get tubes put in her ears during her palate surgery in April. If she gets another infection before then, she may need the tubes sooner. She'll have a consultation with Dr. Bernstein, the team ENT, in a couple of months to assess her hearing. Emily is also back on a nebulizer for wheezing due to her latest cold (which also caused the ear infection). My concern with the nebulizer is that Emily may have asthma, something we were worried about when she was just 10 weeks old and was nearly hospitalized for bronchiolitis. The nebulizer saved her from a trip to the hospital then, but she needed to be on it for three full weeks.

We've been signing with Emily since she was about five months old. She looks like she's trying to sign some things back to us, but it's hard to tell. This picture shows her doing something she does a lot - opening and closing her hands when she's playing and excited. It's sort of close to the sign for "play" which is to shake both hands back and forth while closing the middle three fingers.

Something we're not making much progress on is getting Emily to take food from a spoon. Here's a classic reaction from Em, shutting her lips tight and getting that resolved look in her eye until I move the spoon away. She enjoys self-feeding though - she'll eat cheerios and other table foods such as teething cookies, bread, etc.

She scored a cookie and she's happy. Still, it's very frustrating trying to get Emily to eat and we're working with a speech therapist from Early Intervention to help her get comfortable with her mouth again. She seems particularly sensitive to anything touching her upper gums (understandably), though lately she has been letting me massage her scar and even gently rub the upper gums. I hope that the more I touch the area and massage it, the more she'll relax about things being near her lip and that may translate into her ultimately accepting a spoon.

The sleep situation is much much better. Emily can now fall asleep within minutes after being put down in her crib. We no longer have to rock her for a half hour then put her down completely unconcious only to repeat the procedure 4x a night. She is still waking up about once a night to eat a couple of ounces, but now the nightly visits take about 10 minutes (instead of 1 - 2 hours). Her naps are better too (for the most part) she is averaging one long nap and 1-2 short naps per day.

For My Friend Shelley

2004-12-09T11:21:00.000-05:00

Dear Shelley,
Since I know you check my blog almost every day, I wanted to give you a shout out and say thanks for being such a great team coordinator.

Here's a picture of me with my Aunt Amy who I love to snuggle with.

I know you'll be proud to hear that I am now saying ma ma ma on a regular basis. I'm also making some other cute sounds that I'm probably not supposed to (baaaaaaa...daaaaa....) I miss you and can't wait to visit NYU again so I can drool all over you.

Love,
Emily

A week of firsts

2004-12-03T07:48:00.000-05:00

Emily has astounded us (as usual) with her adapatability in all manners of everything (except, perhaps, with the transition back to her bottle which she still refuses). Since we started teaching Emily to fall asleep by herself only three days ago (sounds much better than "letting her cry it out") her sleep has improved tremendously. So here are her firsts...

1) For the first time EVER Emily fell asleep all alone in her crib yesterday and it wasn't just once, it was for both naps and at bedtime. She only cried about 10 minutes for naps and more like a half hour at bedtime. She then woke up at 2:30 am and we fed her a few ounces and put her back down. She fell asleep in a half hour (we checked in with her once) again, all on her own.

2) For the first time EVER Emily woke up and went back to sleep (this morning at 6:00 am). She cried for about 2 seconds and then was silent until 7:30.

3) And unrelated to sleep but pretty cool, Emily just started holding things with both hands playing with them for extended periods of time (while sitting on her own) - a sign that she may be ready to hold her own cup and begin to self feed.

That's my big girl!!!!

Some Fun

2004-12-02T08:56:00.000-05:00

Here's an artistic shot of Emily in a tutu. She was fascinated with it - I think it was the scratchy material. By the way, still not sure about the white tongue. The doctor says it's not thrush (it's not bleeding or sore). We're thinking maybe it's like that because she doesn't have a palate to scrub her tongue clean, so we've begun cleaning her tongue with a wash cloth and it's gotten a bit better.

From left to right, Grandma Janne, Emily, Chloe (Emily's cousin) and Ana

Grandma is explaining to 4-year-old Chloe that Emily doesn't have a palate (note she's pointing to her top lip). Emily is demonstrating this by arching her back and opening her mouth to grin up at Chloe and Ana (well her mouth isn't open in this shot but trust me on that).

Crying It Out

2004-12-02T08:24:00.000-05:00

Well, over the past month Emily's sleep habits have grown progressively worse. She needed to be rocked to sleep each and every time whether it was for a nap or for bedtime. She would occasionally fall asleep in the carseat on the road, but inevitably woke up the second the car stopped. It also began taking longer and longer to put her down (she'd stop herself from falling asleep or wake up as soon as her body hit the crib) AND she was waking up more often during the night. I started having anxiety attacks at bedtime and I walking into walls and hallucinating. Okay, maybe I wasn't hallucinating but I did some research about the Ferber method and bought his book Solving Your Child's Sleep Problems and we started two days ago.

Oh, the agony. In short, Ferber says to break your child of the associations she needs to help her sleep (like rocking and eating) and teach her to fall asleep in her crib on her own. That means putting her down in her crib while she's tired, but awake, and letting her cry. We are allowed to go in and visit in increments of 5, 10 and 15 minutes (these increments get progressively longer each day). Eventually by day 3 or 4 you should see marked improvements.

Last night was the second night and we saw a marked improvement. She slept from 7:15 to 5:15 am! She cried for 40 minutes though when we put her down. We go in there and sing to her and rub her belly quite frequently and she's fallen asleep in her crib (generally with Jim rubbing her belly, but we won't tell Ferber that). We are not rocking her for her naps either, which I think is expiditing the process. Still, it is heart wrenching for us knowing all she's been through. I do think this will help us in the long run, particularly when it's time for Palate surgery in April. If she's a good sleeper by then, it can only help her recovery.

Emily woke up at 5:15 am this morning and fell asleep on me for about 30 minutes starting at around 6:45 (again, don't tell Dr. Ferber!)

Thanks, Dr. Cutting

2004-11-24T21:52:00.000-05:00

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

2004-11-24T21:45:00.000-05:00

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

2004-11-21T20:34:00.000-05:00

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

2004-11-16T10:45:00.000-05:00

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

2004-11-10T09:01:00.000-05:00

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

2004-11-08T13:42:00.000-05:00

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)

2004-11-04T08:25:00.000-05:00

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)

2004-11-02T15:06:00.000-05:00

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.

Lots of Leaves (picture)

2004-10-29T20:56:00.000-04:00

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)

2004-10-27T18:39:00.000-04:00

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

2004-10-26T18:52:00.000-04:00

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)

2004-10-21T10:15:00.000-04:00

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)

2004-10-15T08:27:00.000-04:00

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

2004-10-13T08:27:00.000-04:00

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

2004-10-12T13:51:00.000-04:00

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)

2004-10-10T13:37:00.000-04:00

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)

2004-10-09T10:21:00.000-04:00

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

2004-10-08T20:37:00.000-04:00

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)

2004-10-07T20:59:00.000-04:00

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)

2004-10-04T20:36:00.000-04:00

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)

2004-10-01T21:03:00.000-04:00

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!

Another poem

2004-09-27T07:04:00.000-04:00

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

2004-09-24T06:53:00.000-04:00

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

2004-09-22T21:22:00.000-04:00

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)

2004-09-17T21:52:00.000-04:00

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

2004-09-16T20:10:00.000-04:00

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)

2004-09-13T08:11:00.000-04:00

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

2004-09-07T18:59:00.000-04:00

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

2004-09-05T22:00:00.000-04:00

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

2004-09-04T08:49:00.000-04:00

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)

2004-09-02T21:23:00.000-04:00

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)

2004-09-01T11:18:00.000-04:00

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

Sunday Brunch (picture)

2004-08-29T20:33:00.000-04:00

We spent the morning at Amy and Stuart's house. Emily managed a short nap while the girls (Ana and her two cousins, Chloe and Layla) played outside in a little pool. We couldn't keep the prolabium tape on Emily today - it fell off early in the morning and we kept it off because she seemed a little cranky. Here's a picture of me and Emily on Amy's new porch.

Emily is 4.5 months old here.

Ana (far left), Chloe and Layla looking at a lizard in Chloe's hands.

NAM Appt. #20

2004-08-25T21:36:00.000-04:00

Emily saw Dr. Brecht today since Dr. Grayson is still out most days in August. The waiting room was full and we had a long wait, but Emily was happy and I don't mind that it takes so long sometimes. I asked Dr. Carter (another orthodontist) to measure Emily's columella and she said it's at 5 mm with no NAM and 6.5 mm with the NAM, but no tape. She then rolled her eyes at me and told me not to worry about the exact length so much - Emily looks good and will get a good outcome and that's what's important. The adjustment was quick, but we started talking about pre-op tests today and it's making me quite nervous.

Ear is All Better

2004-08-24T22:22:00.000-04:00

Emily went for a follow up to check her ears. She finished 10 days on the antibiotic on Sunday (two days ago). Her ears were all clear and she weighs 14 lbs 14 oz - up a full 13 ounces in just 12 days. That's my good girl.

Rice Cereal - Yum (picture)

2004-08-16T21:58:00.000-04:00

Emily had solid food for the first time today. She was four months old yesterday. She seemed to really love it, but it made her gassy. Westarted with rice creal and propped her up in her high chair. The NAM got in the way a lot. We're going to try it without the NAM soon.

Emily even grabbed the spoon! Then she slid over the to side and started to cry. Ah well...

First Ear Infection

2004-08-12T21:57:00.000-04:00

Took Emily to the doctor because her left eye was very watery. It turns out she has an ear infection on that side. The doctor gave her 10 days of Augmentin and 5 days on eye drops. She weighs 14 lbs 1 oz.

Emily's Big Sister (picture)

2004-08-09T21:48:00.000-04:00

Today Ana, Emily's sister, who is three years old was playing with one of her dolls. She looked at it and said, "Does the baby have a cleft?" I said, "no, not all babies have clefts." Ana said, "Why not?"

Ana and Emily in late July 2004

Emily Rolls!

2004-08-05T21:47:00.000-04:00

Emily rolled from back to front and front to back for the first time today. Yay Em!!

NAM Appt.17

2004-08-04T21:43:00.000-04:00

Emily saw Dr. Brecht today because Dr. Grayson is out in August. He was very nice and really sweet with Emily. She had lots of smiles for him and everyone today. She fell asleep twice while we were there. I was able to put her in her stroller once and Dr. Brecht woke her the second time. We met another family in the waiting room that I've been writing to (they found my email address in the CleftAdvocate.org Photo Gallery. They are due to have a baby boy in about a month with bilateral cleft lip and palate. They are very sweet.

NAM Appt. #13 (picture)

2004-07-08T21:28:00.000-04:00

Emily is nearly three months old now and has had the NAM in for 11 weeks. We didn't get to see Dr. Grayson today because he was in surgery. Another orthodontist, Dr. Lisa Vecchione did Emily's adjustment. Her columella looks great and so we still have not added the nasal bridge yet. I hope we don't have to add it. Everyone adores Emily at NYU. She rarely cries and they all love to hold her. I took her in her stroller with the carseat and it worked out well. She even took a nap while we waited.

Here's Emily right after a bath - a rare shot without the NAM

Speech Pathology Visit

2004-07-05T21:22:00.000-04:00

Prudence, Emily's speech pathologist with Early Intervention, is very impressed with Emily and the NAM. She says all the typical problems associated with cleft lip and palate don't seem to apply to Emily because of the NAM. She is eating well and is used to people touching her face. She's going to call Shelley, the speech pathologist at NYU to see what she recommends.

Pulling Out the NAM

2004-07-04T21:20:00.000-04:00

Emily has started pulling the NAM out mostly because she wants to suck her thumb and gets her fingers caught in the stents. I'm afraid we're going to lose it!

NAM Appt. 11 (picture)

2004-07-01T13:22:00.000-04:00

Emily's appointment at NYU was uneventful except I was an hour late and it was the first time I brought the stroller (usually I just have Emily in a sling). Emily was still on the nebulizer and that sucker is too heavy to lug around the city with Emily and my enormous backpack. Her columella is at 4 mm on both sides now and everyone is very impressed with her progress. Surgery is only 2.5 months away and I'm nervous as hell.

Emily at 11 Weeks Old. She's all smiles even with the NAM in.

Sick Kid

2004-06-30T13:19:00.000-04:00

I brought Emily back to her pediatrician, Dr. Perzley, today. She is still wheezing and will be on a nebulizer at least another week. She weighs 11 lbs 9 oz, up 2 oz from Friday even though this poor kid is so sick.

NAM Appt. #10

2004-06-24T13:14:00.000-04:00

Dr. Grayson said Emily's columella was 4 mm on one side and 3 mm on another and the goal is to stretch it to 5 mm. Her palate hasn't begun to come together so he adjusted the NAM by flattening the top. He didn't put the nasal bridge on yet - hopefully we won't need that - it's a piece of plastic that connects the stents just beneath the tip of her nose. It would apply a lot of pressure to the columella and the reason I don't want to deal with it is because I'm afraid it will cause blisters, hurt her and generally complicate things. She was so good today. She hardly cried at all until it got later and I know she was tired. She fell asleep at 6 pm in the car and is still asleep as of 7:30. It means she'll be up early.

Early Intervention - First Visit

2004-06-08T13:11:00.000-04:00

The team from EI was here today - 5 people in all! They said Emily is on target developmentally, but we're really worried about her hearing. She slept for half the visit and was wide awake for the other half. They will send a speech pathologist twice a month to start.

NAM - Appt. 7

2004-06-06T13:07:00.000-04:00

Emily's appointment went really well today. Dr. Grayson took lots of pictures of her nostrils because they were taking the shape of the stents. He rounded the stents to make them more natural. Emily cried the entire time the NAM was out which felt like forever, but was only about 10 minutes. She fell asleep sucking on Dr. Grayson's finger when he put it back in. Dr. G. said her columella was 3 mm and it was stretching so well he didn't need to put the nasal bridge on. She weights 10 lbs. 13 oz with her clothes and diaper on.