Caitlin's First Christmas

We spent Caitlin's first Christmas with Paul's family in Milwaukee. Caitlin enjoyed meeting her extended family and spending time with everyone! Here are a few pictures of her opening presents on Christmas Eve:

Getting ready for Christmas!

Here are a few pictures from yesterday:

Posing in her Christmas dress:

Pictures with Santa (she wasn't too sure about Santa!):

Opening her first Christmas gifts (our family gifts, since we will not be here for Christmas):

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!

Caitlin's Surgery- Day 3

They are making moves to try to get us out of here today! They said that Caitlin is doing everything she's supposed to do, her fever is back down to normal, and although she is crying a lot and generally just not happy, it seems to be more due to her frustration than pain.

She has been awake since about 7 AM (so almost 2 hours now); she's been drinking juice and even some broth, so they disconnected her IV. They'll keep an eye on her "output" (i.e.- diapers) to make sure she's getting enough fluids. Her surgeon is supposed to be coming by to give her a thorough checkup, and I guess as long as he's satisfied with what he sees, we'll be discharged!

Caitlin is very restless, so I asked to take her for a little walk. I carried Caitlin and dragged her IV machine all around this floor- this hospital is huge! That seemed to make her a little happier. She pointed at things, and even laughed a little- and tried to "bark" at a dog statue we saw! It made me feel so much better to see some of the "old Caitlin" come out!

We came back by her ward to make sure no one was looking for us, and her nurse disconnected her IV. Now we are waiting for a wagon so I can walk her around again. Maybe we can go find me a Dr. Pepper- I seriously need one, but I can only slip out to the cafeteria when she's sleeping. And I'm typing this with one hand because she hasn't let me put her down since she got up. I just wanted to update everyone on the news so far. I really hope we can go home soon- I think Caitlin will be SO much happier at home!

She just drank some juice! (Out of a bottle!) Only about an ounce and a half, but it's a start! Her fever is back, though...

Caitlin seems to be having a much better day today (so far)! She still will not even let a bottle near her lips, but the nurse told me I could try giving her some broth with a spoon (VERY carefully- the spoon cannot enter her mouth, so I have to kind of dump the soup in her mouth. Only about half actually makes it in!), and she did have a few spoonfuls this morning. But she was so exhausted she just couldn't keep her eyes open, so I put her back down to rest.

About noon she woke up and was pretty upset. She didn't seem to be in pain, just really unhappy. I picked her up and held her, and she calmed down. The nurse brought some more broth, and this time she drank more. Still not enough, but it's a start! She was awake for a good 40 minutes, although I couldn't really call it 'alert.' She sat in my lap and stared at the TV; she was pretty zoned, but she could keep her eyes open and didn't cry so I was happy. I'm calling it progress!

No sooner had I finished the last post when the Fellow Resident came back by for a visit. Poor guy- we talked to him yesterday morning before the surgery, last night about 8 PM (so 13 hours later), then he was back here by 7 AM this morning. These people work hard and long! I'm really very impressed with this hospital and all the people I've met so far. Our nurse last night was really amazing; I just can't say enough nice things about her, and everyone we've spoken to or dealt with has just been top-notch!

Anyway, the doctor said her mouth looks great, and that our goal for today is to get her to drink something. He basically said in so many words that since she'd had such a rough day yesterday, and since she won't have any part of drinking anything, it doesn't look like we're going home today. He reminded me that the older babies have a harder time with this procedure and recovery, so this was expected. But I decided we'd both be a whole lot happier at home (of course!), so as soon as he left I tried so hard to get Caitlin to drink something. She won't have any part of it. She won't even let the bottle near her mouth. I'll try again later... now I need a shower! Caitlin has drifted back off to sleep, so I'd better hurry!

Caitlin's Surgery- Day 2

Well, we made it through the night! The surgeon's Fellow Resident came by last night, and I talked to him about my concerns with the Morphine. I told him that whatever pain meds they had given Caitlin in Recovery (not Morphine, but I couldn't remember the name) seemed to have worked quite well; she had been moaning and groaning in her sleep, but as soon as they gave her those meds she'd fallen into a quiet, calm sleep. I asked if we could try that pain med again.

He authorized her for the new meds (still don't know the name, but I need to ask so I'll know for the next time), and Caitlin became a different child. She is so much calmer now, and she slept pretty peacefully through the night. She did have a slight fever yesterday, which the nurse thinks was also helping to make her uncomfortable, but that went away overnight which is great!

She woke up crying at midnight, 1 AM, and about 2:15, but I could calm her and she would fall back to sleep. After 2:15 she started to wake up more often, and take longer to calm down, so about 3 AM the nurse came back and gave her another dose of the new pain meds and she pretty much slept soundly from then until 7 AM when her new nurse came in to meet her.

Now if only I could have had some of those magic meds; I did not sleep at all! The bed I made on the couch was comfy enough; the nurse brought me a huge pile of sheets and blankets, and I piled them all on to make the bed as plush as possible. But every time I'd start to drift off Caitlin would wake up. And in between, her IV machine or monitors would start to beep, so I'd have to go get a nurse. Then after 3 AM, when Caitlin finally went into a sound sleep, they brought her roommate back in, who is just not a happy camper. Poor little guy- for some reason his mom is not here with him, and my heart bleeds for him. He cries for his mom and I just want to go over and scoop him up and hold him! I suppose his mother might have a good reason for leaving him here by himself, but I've tried to imagine what might be more important to me than being here with Caitlin and I just can't!

Anyway, the nurses are awesome and tried to help by taking him out of the room for several hours last night. He clearly didn't want to sleep so they wheeled him around in a wagon and let him hang out at the nurses' station. But at 3 AM they brought him back, tucked him in, and closed the door. A few minutes later he started to scream, and scream, and scream. I waited patiently but no one came. Finally, after several minutes of this, I went out to the nurses' station. The kind nurse looked up and asked "Can I help you?"

These nurses have all really been amazing, and I have no complaints with any of them. But at 3:30-whatever in the morning, after basically no sleep, I'd about lost my patience! I said "Seriously?! Can y'all not hear him screaming? I'm about to scream! Please- do something??"

They came in and tried to get him to sleep. Then they left the door open so that they could hear him, which I was thankful for, but it made the room noisy and bright. Somehow Caitlin slept through it all (thankfully!), but the roommate and I were not so lucky. Poor kid. I really hope his mom shows up soon!

Anyway, Caitlin has drifted back off to sleep, so I'm going to try to get a quick shower and get dressed...