Visit with the surgeon

We had a visit with Caitlin's plastic surgeon today. Her 2nd post-op appointment was supposed to be next Thursday, but it was moved up after Monday's "incident." The doctor said everything looks good; Caitlin still has some stitches in her nose, but they should dissolve so they didn't remove them today. It would have been best to have left the stent in until the swelling went down, but so far it appears no major damage was done. We will just have to be very careful, but overall things look good... Which was a huge relief for me!(Taken today outside her doctor's office today)

Unscheduled removal of stent

Caitlin had a little incident this afternoon: while goofing around on the bed after her nap, she wound up knocking part of the stent out of her nose. After spending over a half hour on the phone trying to get the number of the on-call surgeon, then multiple back-and-forth calls between her, Caitlin's surgeon and myself, it was determined that it needed to come out.

We are up in LA celebrating Caitlin's birthday with a trip to Disneyland and therefore unable to get down to see the surgeon, so my mom and I got to do it ourselves. My mom held Caitlin down while I stuck scissors up Caitlin's nose and snipped the last stitch that was holding the rest of the stent in. Not exactly how we had planned to spend our evening, but now we can get a real look at her amazing new nose!Caitlin is very proud of her new nose; she keeps telling me how much she likes it! (She also keeps announcing "Tube all gone!")

Just in time for her birthday, too- this may have been the best gift that I could have given her (as far as making her happy and comfortable, that is; not necessarily for the benefit of her nose, since the stent was supposed to stay in until next Thursday...)

First post-op appointment

Caitlin had her first post-op appointment this afternoon, and the stitches and splint were removed! I can finally see her "new" nose and scar, and they look great! She still has the stent in her nose for 2 more weeks, but everything else is gone.

Caitlin did not cooperate with the surgeon or nurses today (she was not in her usual "perfect patient" mood, not that I can blame her- it's only been 6 days since her surgery!), so they had to wrap her in a blanket like a burrito, and they kicked my mom and me out of the room. I argued, but they kept telling me that Caitlin would do better without me in there. I was not happy, but I walked out the door (mumbling something to the tune of "this is a huge mistake"). When I saw the terrified look on Caitlin's face as I was walking out the door, and the pleading look in her eyes as she was screaming bloody murder and staring at me with a look that clearly said "Please don't leave me!", I turned around and walked right back in the door and announced that I was staying. I would stay out of their way and not interfere, but I was not leaving. They were angry and exchanged a lot of looks between themselves, but there was nothing much they could do to keep me out at that point.

It was nowhere near as bad getting the stitches taken out as it had been getting them put in back in July when Caitlin busted her eye (when I was allowed to stay by her side), so I really don't know what the problem was. I stood back, against the wall where Caitlin could keep her eyes on me, but I was not in their way. Caitlin was very upset, even when it was over, and took a few minutes to calm down, but I know that it would have been far worse if they had succeeded in making me leave.

Anyway, she's done for now; her next post-op appointment when they will remove the stent from her nose is on the 23rd, but for now she's going to get to enjoy a little more spoiling from her Mama and Nana (dinner tonight at her favorite restaurant and a trip to Disneyland next week for her birthday, among other things)!

Here are a few pictures from today...

Before:

After:

(Look at that cute little nose!)

At her celebratory dinner tonight:

Doing great!

Caitlin is doing really well since her surgery. I am completely impressed with how strong and brave she is. She really doesn't let anything get her down. She even told me that she was going to thank her doctor for fixing her nose! She fights taking her medicine and cries hysterically when I have to clean her scar and apply the antibiotic ointment, but other than that she has a positive attitude and is just amazing.

She's enjoying being spoiled, and it's starting to show, however. She has definitely been testing the limits! I've been telling her that sympathy only goes so far; she's not so pitiful that she can't find herself in time out if she keeps it up!

I took these pictures in the car tonight; we went for a short ride before dinner, just to get out of the house, and Caitlin was having a good time listening to her favorite CD ("Wicked")...

Singing along to "Defying Gravity":

Pretending to fly, just like the Wicked Witch:

Hard to believe she just had surgery 2 days ago, huh?

Some pictures from the hospital yesterday:

Posing with "Sasha"- her new hospital bear that I gave her that morning:
Hospital gowns; not for the modest (Caitlin didn't mind, though!):Watching the Disney Channel while we waited:All dressed up and ready to go back (I looked like an Oompa-Loompa!):

So far so good...

I don't want to speak too soon, since the 3rd day after surgery is usually the hardest, but so far Caitlin is doing amazingly well! We stopped by the pharmacy last night on the way home from the hospital to pick up Caitlin's prescriptions, then went to McDonald's to get her her very first milkshake! She loved it- and also ate some homemade applesauce I made for her. She wanted to take a bath, but she melted down in the tub so I put her to bed.

Neither of us slept well last night (I let her sleep with me so I could keep an eye on her, so I know that she was tossing and turning all night), so we got up early this morning. She didn't really want to eat, but I finally got her to eat some yogurt and the rest of her milkshake from last night. Getting her to drink has been a struggle, but I finally got a syringe today and she drank juice that way.

Caitlin looks kind of like she ran into a wall or something; her face is swollen, she has a splint over her nose and a tube coming out of each nostril, along with all of the stitches above and on her lip. She looks pitiful, but she is such a trooper!

She can't smile or move her lips much, but she started laughing this morning by opening her mouth slightly and just saying "eeeeee!" It's kind of cute (in a sad way)! She is talking, but without moving her lips and sounding very nasal, it's very hard to understand her. But typical Caitlin, she doesn't let anything stop her! She's still up to her devilish ways and trying to get herself in trouble!

After refusing to slow down this morning, we decided to take a walk in the park. That way I could strap Caitlin into the stroller and keep her out of trouble! She enjoyed it- and the fresh air was good for all of us!

On our way home!

I am typing this from the car; we are on our way home! Caitlin is still pretty out of it, but she is aware and talking some and doing great! She is such a brave trooper (everyone said that- even the doctors and nurses; everyone is in love with her!). I am so proud of her.

Here's hoping that tonight goes well and she can sleep peacefully...

Should be going home soon...

We're in recovery; Caitlin is doing great! She's totally out of it, but she's much more mellow than last time. No fighting or screaming at least! She refused juice or popsicles at first, but did finally drink some juice so she should be released sometime soon!

She's out of surgery

Just talked to the surgeon and she said everything went great. I'm hoping to get to go back soon to see her...

We're at the hospital

Caitlin is in surgery now. So far everything has gone smoothly. Caitlin loves the hospital and her doctors so much she didn't get at all upset until just before she went under. They let me go back to the OR with her this time, which really helped. I told her she was just going to take a nap, and I would see her when she woke up. We made it a fun game, and she was laughing and playing with the doctors, nurses and me until it was time to put the mask on. Then they let me hold her, and I told her the mask was just like her "cough medicine" (the inhaler she had to use for her bronchitis over Christmas had a mask just like that one), so she let them put it on her and she took a few big breaths, just like she did with the inhaler. When she started to get woozy she cried a little, but then she was out. It was hard to lay her on the OR table and have to walk out, but I was brave!

They say they will call me back to recovery as soon as they can so that I can be with her when she wakes up. Usually they want the kids to be awake before parents are allowed in, but after all the problems she had last time coming out of the anesthesia, they said they would make an exception.

I have a few pictures of Caitlin and me in our cute hospital garb, but I can't post them from the iPad so I'll have to share them later!

Surgery Day

We are heading up to the Children's Hospital tomorrow morning for Caitlin's 3rd surgery. This time they will be re-doing her lip repair which was done in China. For whatever the reason (we can only speculate) her scar did not heal properly the first time it was repaired, so it is too thick. This surgery is not only for cosmetic reasons, but also because her lip is attached too tightly to her gum, making it difficult to flip her lip up to get to her top front teeth. This could even be painful for her (I have heard from others that it is), although she is such a trooper she has never complained.

Many cleft kids undergo a "lip revision" before they enter kindergarten in order to clean up their scar. The doctors usually try to work on the nose at the same time if it is still partially collapsed (as Caitlin's is). Unfortunately Caitlin's scar is too thick for a revision; they will have to basically cut out her old scar and completely re-do the repair. She will have a splint-type bandage over her nose until her post-op appointment next week, and she will have a stent in her nose for a couple of weeks. She will be on a soft-foods diet and have many other restrictions for a couple of weeks as well.

Our plastic surgeon back at Stanford was adamant that we should do this surgery now, before her peers are old enough to notice differences. I have already had a few children ask me about Caitlin's lip. They were only asking in innocence; there was no malice and their comments did not offend, but they helped me to realize how difficult it would be for Caitlin to constantly have to answer such questions herself. With any luck this surgery will be successful, and she will not need another revision in a couple of years when she starts elementary school.

Our only concern is her nose. The doctors prefer to wait until the children are a little older before they try to work on the nose, but our new plastic surgeon and her resident are going to do the best they can. Although they have warned me that another nose revision is likely on down the road, hopefully Caitlin will be able to wait until she is older.

The surgery is scheduled for 12:30 tomorrow afternoon; we have to be there by 10:30 to check in. Hopefully she will not have to spend the night, but that all depends on her. I am praying that she will cooperate this time so we can get home as soon as possible!

As with her palate surgery last year, I will do my best to update the blog with news as often as possible (assuming the hospital offers wi-fi).

Please wish us luck, and any prayers would be greatly appreciated! Although this surgery is not supposed to be as bad as the palate surgery last year, any surgery or voyage into the unknown is a scary leap of faith and I will be very glad when it is over!

Getting back to (somewhat) normal...

Today Caitlin was able to switch to a pureed diet, and I can't explain it, but it is such a relief! I still have to feed her (she is still not allowed to put ANYTHING in her mouth), but we can use a spoon instead of a bottle. And the food just has to be pureed as opposed to liquefied, which is one less step! She still can't have any "chunks" or soft food until the stitches are gone and her mouth is completely closed up, but the surgeon says that takes about 3 weeks so starting next week I'm going to start adding soft foods back in. We still have to be very careful until about 6 weeks post-op, when her mouth will be considered healed.

Maybe it's just that, little by little, things are beginning to return to normal and that just feels good!

We're Doing OK!

Just wanted to update for those who were worried about us to let you know that we are doing OK. The past few days have actually been much better; in fact, during the daytime (awake hours) Caitlin almost seems to be back to her old self! Nighttime and naptime are still a different story, but the past 24 hours have even been better in that category (knock on wood!)

Starting on Tuesday we can move to a pureed diet, meaning she still has to eat baby food, but at least she doesn't have to have the baby food watered down and fed through a bottle. That should make her happy! I am down to only giving her Tylenol when she needs it (when she gets really cranky and starts playing with her mouth with her tongue). The "no-no's" will stay on another week, and even after that I think I will still put them on her when she's sleeping and I can't watch her. I'm still very afraid of her hurting or un-doing everything that's been done. Other than that, things are finally, slowly returning to near-normal.

Thank you again for all of your thoughts, prayers, advice and words of encouragement! I really don't know what I would have done without them! :)

Good News!

Well, we didn't get any real answers from the surgeon today, but I heard the words I'd hoped to hear: Everything looks great! Her mouth is healing just fine, the tissue looks good, and there is no sign of infection. She is by no means healed; she is seeping blood (thus the orange stains on her sheets), and it will be another 2 weeks or so before the roof of her mouth has closed up, but he saw what he wanted to see for it being only 1 week after surgery.

He acknowledged her stinky breath and the drainage from her nose, but he said that since there was no sign of infection it is OK and will (hopefully) pass with time. As far as the sleeping issues, he said that it is to be expected with the tramua she just went through and, again, should pass with time. And she still has a very slight fever, but he said that is normal for post-op. Unless something else comes up, we don't have to go for our scheduled post-op appointment next week; we are done until the New Year!

She is to continue with the liquid diet for another week, then we can start slowly adding soft foods back in. The no-no's have to stay on for at least another week, but since she is such a major thumb-sucker he said we'd probably want to keep them on for a good 3 weeks, until her mouth is closed up.

So it was a very long day (the hospital is about 90 miles away; with traffic it takes 2-1/2 hours), but so worth it to get some peace of mind! Now I can focus on the behavior issues...

A Little Better...

Well, today went a little better! Caitlin woke up with only a very slight fever, which was great news, BUT when I went in to get her this morning I found her with one arm out of her "no-no." How the Little Houdini managed such a feat, I have no idea. I really thought there was no way possible; I put the no-no's under the sleeves of her PJs! But she somehow managed to get her arm out of the no-no and sleeve, and then slip her arm out the neck of her PJs. I flipped when I saw it; she wasn't sucking her thumb when I found her, but I don't know how long she had been "free" or how much damage she might have done. I had spent the night checking on her and making sure she still had her restraints on, so I don't even know when she did it. Unfortunately, however, there is really nothing more I can do to prevent her from getting out of the restraints- short of super-gluing them to her arms. And I can't stay up all night to watch her every move. I'm checking on her every couple of hours, but apparently that's not enough...

The weird thing is, she doesn't even mind the no-no's! She cries when I take them off. In fact, she was sitting there crying when I went in this morning. So why she did it, I have no idea.

So that was a bad start to the day. Caitlin got back in my good graces, however, (I was really mortified with the whole no-no thing) by helping me with the laundry. She likes to put the clothes in, and take them out of the dryer.

She only had 2 tantrums all day, and those were not that bad. She never hit, kicked or scratched, so I'm calling it a victory!

The sleeping issues, however, continue to get worse. It seems to have digressed into separation anxiety. I was trying to figure out why she insists on trying to sleep in her carseat and on the bathroom floor while I'm in the shower, but why, no matter how exhausted she is, she is fighting sleeping at naptime and bedtime. Then I realized that when we're in the car or the bathroom, I am there and she feels secure that I am not leaving her. When she falls asleep at naptime and bedtime, I slip out and she wakes up alone. I'm not sure what it was about the trauma of the surgery that has caused this digression, or how to fix it, but I really need to get a handle on it so that we both can get more sleep. As it is, she is still waking up multiple times a night SCREAMING. Before the surgery she was sleeping through the night, with the exception of an occasional nightmare or night terror.

We are going back up to see her surgeon tomorrow morning, and I have a list of concerns to discuss with him so we'll see what he says. Her fever has stayed down all day, but her breath still smells bad (a sign of infection), and she still has a lot of drainage coming out of her nose. And I'm hoping he has some advice on the sleep issues, although I realize that is probably not really his area of expertise!

Rough Week

Sorry I haven't posted in a few days, but it's been really tough here. Caitlin has taken my total and undivided attention when she's awake, and since she hasn't been sleeping well I haven't had much "off" time, either. And when she doesn't sleep, neither do I, so I've been pretty exhausted as well. Honestly, I just haven't felt like writing about how bad it's been, but people have been e-mailing me to check on us since they haven't heard from me, so I realized I needed to update!

As bad as Friday was, Saturday was far worse. That was the day that Caitlin's frustration with the situation turned to total and complete attitude. She reverted to throwing major tantrums at the drop of the hat, and the tantrums were even more severe than what we saw those first days in China. I thought she was getting over the tantrums; I've tried very hard to teach her that tantrums won't get her anything (tantrums are a MAJOR pet peeve for me; I despise them), but I think she's just beyond the point of rational thinking at this point.

I can put myself in her shoes and understand her frustration. As my parents pointed out, she's lost 2 of her 3 most favorite things: sucking her thumb and eating (she LOVES to eat). I'm thankful that she at least still has her 3rd favorite thing: her car seat! She never liked drinking; I've been forcing fluids on her since the day we met so she wouldn't get dehydrated... And yet now that's all she gets! I don't think she is hungry. She gets just as much (if not more) than she did before the surgery, but I think that since it comes watered down she probably doesn't think it counts. I wish there was some way for me to explain to her what's happening and why, but of course that is not possible. So she has to trust me and hope that I know what's best for her, but we've only known each other for barely 2 months- how much does she trust me?

But that doesn't make it alright to scratch, hit and kick me. I will spare you the gory details (and I really don't want the world to know about this new side of my daughter), but suffice it to say, it was ugly. I had been warned before by the surgeon's PA that she was going to be frustrated and angry, and that she would take it out on me, and that's exactly what is happening.

On top of all that, she is also not sleeping very well. It started with her just waking every 4 hours when she needed more pain medicine, but then it got so bad that she was actually waking up, screaming and fighting, every single hour. It would take me time to get her back to sleep, then it would take time for me to get back to sleep, and then it would start all over again! I almost cried at one point; I was so tired I honestly didn't think I could go on. With us both being that exhausted, it doesn't make it any easier to cope- neither for her to cope with her frustration, nor for me to cope with her!

So it was a very, very long weekend. Today started out better (she only threw 2 tantrums all morning!), but then Caitlin started to run a slight fever. By the time she woke up from her nap, it was higher. She woke up very whiny and she clearly did not feel well. By tonight it was up to 100 degrees; still low-grade under most circumstances, but I have to worry if this means she's getting an infection. I'll see how tonight goes, but we may be making a trip back up to the hospital tomorrow. I had already spoken with her surgeon this morning to tell him about her sucking her thumb Thursday night and about all the discharge coming out of her nose, and he asked us to come up Wednesday morning so he could check her out. But now with the fever we may need to go up a little earlier.

And the adventure continues...

Caitlin's Surgery- Day 4

Caitlin had a low day today. I wanted to post some more pictures of her, but she just wasn't very happy and she didn't smile much.

Last night she woke up several times. She got out of her "no-no's" twice; the second time I went to give her some more pain medication because she was moaning and crying in her sleep and I found her with her thumb in her mouth! I absolutely panicked, as you can imagine! I hope she didn't do any damage, but she never bled so I'm taking that as a good sign.

This morning she woke up very whiny. She whined and cried all morning, then fell asleep on the bathroom floor while I was taking my shower. She took a good hour-long nap, even sleeping through me stepping over her while getting dressed. That set her naptime back, which set her bedtime back. Oh well, I'm really not worrying about schedules right now!

We tried to run to Target to stock up on baby food for her, and she whined and threw mini-tantrums the whole time. She usually LOVES Target- especially riding in the shopping cart- but not today. We came back home and she and I went outside for a bit to work on the yard, then she took a long nap. Normally I'll wake her up if she's not up by 5 PM so as not to mess up her bedtime, but tonight I just let her sleep. She didn't wake up until almost 6!

Tonight I managed to get her "no-no's" under her PJs so she can't possibly get out of them. Hopefully she'll sleep through the night, but she will probably need more pain meds. I can tell when it's time for another dose of the pain meds without even looking at the clock- she gets very cranky and whiny and starts playing with her mouth with her tongue. I was hoping to get her off the pain meds today and just try Tylenol, but with as unhappy as she obviously was I decided not to try it quite yet. Hopefully tomorrow!

We are home- THANK GOD!! It feels so good to be home!

Caitlin was happy to be home- and to see her "Lala" (Libby)! I fed her a snack, then we went for a quick walk around the neighborhood (we both needed some fresh air, and Libby needed a walk). When we got back, we opened a couple of packages that had come while we were gone. Caitlin had a blast helping me open my Lia Sophia order, and trying on all the new jewelry! Here's a picture of her showing off all the necklaces she had me put on her:Definitely a "girly girl"- another wish come true! :)

Then we opened a "get well soon" package my parents had sent to Caitlin: a baby doll stroller.She had fun pushing it around the kitchen while I fixed her some dinner. Since Caitlin has to "eat" through a bottle for the next 2 weeks, and the doctor recommended that I not try to puree her food myself (she said that any "chunks" that get through by accident can get caught up in her stitches, which can get infected, which means big trouble), I used baby food, then watered it down. Caitlin ate a tub of Gerber veggies and risotto, which I watered down with chicken broth; Gerber pears, watered down with some juice; and yogurt, watered down with milk. She loved it all and drank it right down!

After dinner Caitlin seemed to be sinking a little, so I went ahead and gave her a bath to get ready for bed. She did not play in the tub, in fact she looked almost zombie-like. I was starting to get concerned when she didn't even cry when I washed her hair (she HATES that). I gave her some more pain meds and she was asleep in no time. I hope she sleeps through the night and doesn't have any discomfort.

All in all, today was SO much better; it was great to see the old Caitlin emerging! Hopefully tomorrow will be even better. Her appetite seems to be back, and even the "no-no's" (arm restraints) seem to not be bothering her- yet. In fact, she seems to have just accepted them as a way of life. She's already figuring out how to do things with them on, and when I take them off (like for her bath or to put on her jacket), she just patiently waits for me to put them back on!

Caitlin really has impressed me through all this. I am so proud of how brave and resilient she has proven herself to be. I was preparing for the worst, but she has been a real trooper!

Just heard from the doctor, and he is signing our discharge papers! We will be leaving soon!

The nurse just came by to say we do not have discharge orders yet. Still haven't seen the doctor, either. Meanwhile, Caitlin was due for another dose of antibiotics, so we are re-tethered to the IV machine. Bummer. I really hope we get to go home today.

But we did have some fun and enjoy the freedom while it lasted. Caitlin really liked the wagon, although I couldn't catch a picture of her smiling. This was the best I could do:We also went to the playroom for awhile, although Caitlin was only getting frustrated because she couldn't do anything with the "No-no's" (arm restraints) on. But now we are back in the room watching Sesame Street, waiting for more news!