Palate Surgery Recovery - Day 10

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

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

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

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

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

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

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

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!

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

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

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.