Cleft Stories

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.

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.

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.

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.

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.

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.

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.

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.

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…