Lilypie Second Birthday tickers

Lilypie Second Birthday tickers

Wednesday, August 31, 2011

One more day!!!

One more day until the arm restraints come off!!!  


Okay, so I just read that, and had the thought that someone who'd never read my blog before might get the wrong idea of what kind of blog this is!!! 


The restraints I'm speaking of are the ones that little Mia's had to wear for the past two weeks to protect her little mouth after palate surgery from not only her fingers, but from her toys and anything else she manages to grab and stuff in her mouth before someone can run interference and or intervene. We've made it 13 days and tomorrow WE ARE DONE!!!  HOORAY!  (I must admit, though, to being more than a little terrified to suddenly take them off and turn her loose without them.)

Of course, THANKFULLY they don't seem to bother her much.


Nope, not bothered one bit!

Couldn't be happier!

Chilling in the car up front with the AC while we wait for our friend to get home.

Mia LOVING the front seat and chilling with mama.

They don't interfere when playing with a friend...

...or when helping mama go grocery shopping...


...though she has tried on multiple occasions to try and undo the Velcro. Which, would explain why she now has leg warmers on her arms over the restraints so that she can't get to the Velcro.

Saturday, August 27, 2011

Ba Da Be Da Da, Feelin' Groovy!

Mia is doing so good that I have to keep reminding myself that she had such a major surgery just a little over a week ago. If she didn't have the arm restraints on to remind me, I'd probably have to catch myself from feeding her non-mushy foods and would think that it had been longer than surgery than it actually has been.


Here are some photographic proof from the past three days:


What? I LIKE emptying out buckets and playing with all my shoes... and socks... and tights... and leg warmers... and bibs... and bows... and...

Who's cute?

Climbing over, around and through things = fun times! 

Arm restraints are not toys... arm restraints are not toys... Whenever we take them off to get her dressed for the day or to put her pajamas on, she thinks it's great fun to look through the "tubes" of the arms and to slide her skinny little arms in and out of them one at a time.

Heading to the pool in her new swimsuit with built-in floaties = huge torso-ed baby.  :)

Man, do I ever know how to work it.

For reals!

Zerbit!  Enough with the camera mom.  Feed me already so I can get my "swim" on!

Just chillin.

What? Aren't YOU teething too? If so, you can have some ice cream too!

Yummy cold goodness.

 
Man, we love this little turkey so much!

Thursday, August 25, 2011

How do they do palate surgery?

That's what I asked our surgeon when we had Mia's pre-op appointment last week. (Yes, we are officially one week post palate surgery!) I knew all the "stuff" they needed for the surgery was blessedly already there, but just wondered what it entailed. Well, he pulled out a pen and used the paper on the exam table to draw us a diagram of what Mia's palate currently looked like, where they would do the incisions and what it would look like afterwards. As he started drawing, I thought, "Dang, not only is he a great surgeon, he's also an excellent artist." I don't know why, but that thought was oddly comforting at the time. Call me strange, but it was. Seriously, the drawing looked exactly like what I'd observed when I'd looked inside Mia's mouth. After he went  over it with us, we were able to tear out the sketch and take it home with us. I took a photo with my cell phone so I could upload it here. I added notations on what the doctor told us so that we could remember and share.


The pre-surgery sketch.

The post-surgery sketch.

They left a gap in the skin of the palate right behind the front unattached center gum line that the surgeon explained would be closed when they do the bone graft when she's a little older. One of the reasons they wait to do that is to help reduce the risk of inhibiting that front top jawline from growing. I guess there can be growth issues with the top jaw, so they leave it alone in hopes that it will keep growing like it should. It was all very fascinating and informative. Because of that small gap, she still has some food come out of her nose but not nearly as much as she had previously. I think that if she didn't have the propensity for blowing air out her nose after taking a bite of food (when she's playing around), there would be a lot less issues with any food being blown out. Silly girl!

I must admit that last night I saw a few videos on youtube about palate repair. One was a "real-time" video. Ick! Needless to say, I am so SO SOOOO glad that I didn't see that prior to surgery. I highly HIGHLY recommend that parents who are soon to have their little one's undergo plate surgery do not watch any real-life palate repair videos. I don't think I would have EVER been able to hand her over for this surgery if I had seen them prior to her surgery. My advice to anyone even thinking about viewing videos like that prior to their sweet little one having surgery is a very VERY strong DON'T!

That being said, I'm super curious about how things look in Mia's mouth, both before and after surgery. When I was changing her diaper earlier today she was making open-mouthed silly faces and I got a good look at the roof of her mouth. It looks exactly like the second diagram!  :)  I can see black stitches down the middle of the palate, like the surgeon had told us we would. It looks to me to be the same black thread that they used for the tongue stitch. To be quite honest, the stitches look a little crazy and uneven on that middle part - and kind of look like the careless stitches you'd use on an old shoe or something. It's held together nicely though, so I can't complain. You can't even see any of the stitches around the outer edge of her palate. I'm not sure if they used different string or what. The surgeon said the stitches will dissolve on their own, so I guess I'm glad they are so thick since they should hold for a while as they slowly dissolve. I can see where the black organic stuff was placed, but it's already gone so I can see the exposed area where the skin will grow back. Such an amazing process.

One week. One week! It's already been one week post surgery and Mia's pretty much back to normal. I feel so grateful and so lucky. She slept in her crib last night for 11-12 hours straight and has taken her normal set of two, two-hour naps. She's taking her bottle and soft foods like a champ again and we are so relieved! The arm restraints don't really seem to bother her that much, though when we take them off, that little turkey immediately looks right at you and holds eye contact as she puts BOTH her hands in her mouth. Oh my! As I was telling a friend via email earlier today, the only really hard part about the arm restraints is that she can't bend her arms to sign "hungry" (fingers to her mouth) when she's hungry and she also can't bend her arms to rub her eyes to let us know when she's ready to go down for a nap or for the night. She can however, still wave her arms to let us know when she's "all done" during feeding time.

Well, yes it's a miracle, we made it through palate repair surgery none the worse for wear. We hope and pray that no fistulas (holes) open up in her palate, which would require another surgery. She's doing so well and in one more week we'll have the arm restraints off and be good to go! Thank you to all of you who kept us in your thoughts and prayers and sent good vibes and positive karma our way - all of your efforts definitely paid off in BIG dividends!

And now, for your daily dose of cuteness:

Is that a giraffe on my shirt?!?!

I LOVE giraffes!!!

Silly baby.

Uh, oh. Somebody is working on figuring out the Velcro on her arm restraints.

Tuesday, August 23, 2011

We survived!

I must admit that at day one and two post-surgery, I had my doubts that things were EVER going to return to any semblance of normalcy. EVER. However, I am pleasantly shocked and amazed at how quickly Mia has bounced back. She seriously continues to impress me with her happy, pleasant, sweet, indomitable little spirit and how she just tackles anything placed before her head-on.


"Yeah, that's how I roll!"  :)  
Mia learned how to climb on and off her little car today and was on and off it ALL day long. She can even propel the thing herself... backwards. It about gives me a heart attack when she leans back, doesn't hold on and pushes herself backwards because she ALMOST tips the thing over backwards with her on it!

"Yeah, I roll THIS way too." 
She cracks me up!

Sleeping arrangements have changed!

Up until tonight, this was Mia's bed. Her car seat. In the middle of our bed. We had to keep her at a 40% angle or more to help with swelling, so car seat it was. Thank goodness we have a king size bed!


Now for a close-up, in case you missed it in the above photo. This is why Mia LOVES her knitted blankies - loves to stick her fingers and toots in the weave of the blanket. Silly girl! (And no, her toes are NOT all crookedly normally, just when they're stuck skewumpussly in her blanket!)

We tried this for a night... actually for about 5 minutes. She'd stir and wake up and sit straight up and then all towards mama for a human pillow and so she could sleep face down on my torso. She sure looked cute though, so I had to take a photo.  :)

BACK TO THE CRIB FINALLY!
This was Mia taking her first nap today in her crib. I had to sneak in and make sure she was okay with the arm restraints and hadn't gotten them off or gotten herself into a horribly uncomfortable position. Yeah, she was pretty comfy and had some of her favorite knitted blankets handy and cozy.

So, I'd read up on palate surgeries on my cleft group prior to Mia having her palate surgery, and there were so many stories about their sweet kiddos not eating and/or having huge eating issues, etc. There were a few "best case scenarios" that I was hoping for, but a lot of really rough stories. I was really worried, and any time I'd think about the approaching surgery I'd get sick to my stomach. I'm glad that I knew all of the different scenarios so that I could be adequately prepared for what might happen, but I'm even MORE glad that things went so incredibly smooth. Yeah, those first days were rough, but dang, she'd just undergone a three hour surgery! Seriously, that sweet baby girl of mine is such a tough little cookie and just seems to take everything in stride. She's only 13 1/2 months old and I think she's already tougher than I'll ever be!


video
Day after surgery - first day home. Arm restraints don't slow her down at all!


What is Mia eating, you might ask.  Well, for breakfast she usually has baby oatmeal cereal with a can of fruit baby food mixed in. Lunch, rice cereal with veggies and/or veggies and meat baby food mixed in and a Gogurt for a snack. Man it's hard not being able to do sandwiches anymore for her for lunch for a bit. Today I actually contemplated trying to puree milk and a peanut butter and jelly sandwich for her. I didn't actually DO it, merely contemplated it. Of course we still have a week and a half of arm restraints to go, so I'll let you know how it goes if it comes to that.  :)  For dinner we do some more cans of... wait for it... wait for it... baby food and then a chocolate pudding cup for dessert. I'm started to get sick of this soft foods already. Sigh! Thankfully Mia's still eating, so that's good! 

Nice cold Gogurt. Yum!


We still are having some issues trying to get her to drink fluids. She seems to do best with open cups, but they aren't the tidiest way to drink. Her favorite is orange soda. Yeah, not milk, not apple juice. Orange soda. Does this make me a bad mother? We're at the phase where we're trying just about any non-alcoholic fluids we can find. She has not taken a bottle since that one time until tonight when I finally got her to take her bottle. Zeus and I were shocked when she actually took it because we've been trying daily to get her to take it. We both tried not to talk or move so that we wouldn't distract her from drinking and make her stop. I was so paranoid that I was going to squeeze it wrong or that it would get plugged or she would choke and it would be over. I'm not sure Zeus or I even breathed! She actually took 4 ounces, which is around what she use to take. Hallelujah!

Of course, it hasn't all been a piece of cake today. Last night and tonight she's had a rough go of things. To add insult to injury, it seems as if some of her one year molar teeth have decided it's the perfect time to try and break through. She's been kind of sad and clingy again and was really sad and cuddly today when she woke up from her afternoon nap around 5:30 pm. We lathered on the Orajel and did us some cuddling!

Snuggle buns!


"Look Mom, I've got mad skills!"
What?!?!  Is my precious baby girl climbing on a wheeled object just a few days after surgery?!?! Be still my heart!

"Look Mom, no feet!"
Yeah, she's going to be the death of me.

Monday, August 22, 2011

Palate Surgery is Finally Behind Us!

The next big surgery that we'd been waiting for - palate repair - is finally behind us. Okay, so it's only ONE day behind us, but it seems almost like forever ago - probably because of extreme sleep deprivation.   :)  I'm happy to report that Mia made it through surgery and is doing relatively well with her recovery thus far.  In fact, she has amazed us with her resiliency and continued sweetness.  I have to put up a recent photo before I go into the surgery info and pictures because some of them are very sad and I want to reassure those who read it that she's okay and really doing amazingly well.


See, I'm okay - I don't even mind my arm restraints... too much.


Where's Mia?


There she is! (lol - her hair is pulled forward from her pulling down the blanket)  :)


See, I'm doing good!  :)


I started typing this Friday night when we got home and we were still in the thick of things, but was so incredibly bone-tired I had to shut it down. There were some pretty strong emotions and a severe lack of sleep that made the highs all the more high and the lows all the more low. Somehow we made it through those first couple of days with all our limbs in tact (mom and dad's, not Mia's!). So (DISCLAIMER) here's what was started back then:


On Wednesday morning, Zeus and I got up at 5 am to load up the car in order to hit the road by 6 am to drive to Houston and Shriners Hospital for Mia's 10 am pre-op clinic appointment. There was a mix up with the ladies at the desk and so we ended up waiting for around 75 minutes before they realized in a panic that we were still there and that the doctors were about to head home for the day. Yikes! Luckily we made it in and were checked out by the doctor and ENT. She had fluid on her ears, so they decided to go ahead and put tubes in her ears along with palate surgery. She passed the throat culture - no strep throat - so we got the go-ahead for surgery the following morning. We were scheduled to be the first surgery case and had to report to the hospital the next morning at 5:45 am to check in for her 7 am surgery time.

We headed to the hotel to try and put Mia down for an overdue nap, which ended up being chaotic in and of itself. After we checked in, I had Zeus watch Mia so I could run to the bathroom, and thank goodness he was actually keeping an eye on our little explorer! Zeus saw her just as she found a white powdery ball of something and immediately stuffed it in her mouth. Zeus was on her in a second and swept her mouth with his finger, even as he barged into the bathroom and starting flushing her mouth with water. An eraser size gob of stuff came out of her mouth and washed down the sink. We were a bit frantic, not knowing what it was. Zeus tasted it to see if he could tell what it was and said that it tasted like chemicals. We called the manager and in a round about way decided it was the deodorizer they use to clean the carpets. We got a copy of the info for it and it said it was harmless to digest, but sure freaked us out. One of the cleaning ladies came in and re-vacuumed the whole room and we tried to put Mia down for a nap and Zeus left to try and figure out some problems with his cell phone. It was pretty pointless because she could see me from the port-a-crib, so she ended up exploring the hotel room until Zeus got back.

Ohhh, what's this?!?

Ohhhhh, what's this.... and what's THIS?!?!?  My silly little curious monkey!

When Zeus got back from the Sprint store, he laid down for a nap and Mia and I headed to the pool to waste some time until dinner. Zeus met us down there a little later, and stayed about an hour total. We ended up going out to dinner with a Vaughn (a friend of Zeus's) and Danny and Hilda (brother and sister-in-law) who drove in from Odessa for the surgery.

Happy run away baby when it's time for jammies - luckily papa caught her!

Oh no! Where's Mia?!?!

Hilda and Danny on the other queen bed in the hotel room.

We finally all laid down to go to bed around midnight and had to be up at 5 to head to the hospital and check in the next morning. Needless to say, after getting up at 5 am two days in a row, we started out the day with our sleep banks in the negative.We got to the hospital and all checked in and they showed us to our room to get her changed into the hospital gown. She looked so cute and tiny in her pink hospital gown, and promptly set off to explore the new surroundings.
  
Mia "bear crawling" (so her knees didn't get caught in the hospital gown) out the door of our hospital room.

At 6:45 am they gave her some medicine in a syringe to make her sleepy before they took her back to put the mask on her little face for the gas. The medicine worked quickly and it was sad and endearing and unnerving all at once to see her so loopy and unable to fully control her eye focus as well as her little body. As I carried her down the hall to the pre-op area, she could hear them pushing the bed - the wheels rattled - and she strained to lift her little head to turn and see where we were going and what was making all that noise. As always, our curious little monkey.  :)  Once there, we made it through all the pre-op questions for the third or fourth time and handed her over to one of the nurses. It was nice to be able to hand her over to an actual person and have our last view of her be of her being snuggled on a shoulder of a nurse instead of having to lay her on the surgery gurney and walk out.  We headed to the waiting room, we were in there by 7:30 and they came in around 7:45 to tell us that she went to sleep just fine and they were starting the surgery. Man is it hard to wait for hours for your sweet baby in surgery! They came in a few times to let us know that things were going good, but the surgery took over three hours.

At around 11 am, we finally heard that palate surgery was complete, ear tubes were in, that everything had gone fine with both surgeries and that we should be able to head back into the recovery room soon to see her. We could hardly wait! There was some lively conversation between Zeus and I about who got to hold her first, as Zeus had got to hold her first after lip surgery because I'd had to run get a warm bottle. Because of that, and how hard it had been to miss out on going straight back to see her at the previous story, I wanted to be able to hold her first this time. Zeus would hear none of it, saying that he had to leave to work every day without being able to kiss her good morning and hold her. I think there have only been a few other times that have been even close to being as irritated and irked and disgusted with a conversation as I was with this one with him. He would not back down and would not take no for an answer and some how I managed to NOT kick him. He even went over closer to the door and sat in one of the little "kids" waiting chair that was right in front of the door where they come in to take you back to recovery. I didn't want to make an ugly scene in front of the doctors, so what else could I do? Irk!

Zeus in getting the "jump" on holding Mia first, sitting in front of the door.  :(


When we got back into the recovery room, our sweet little Mia was there thrashing about on the bed making the saddest crying noises we'd heard. They were still unhooking some of the leads from her little chest as Zeus went right into the "holding" rocking chair. I couldn't stand her being that sad so I walked around the bed to the other side so that I could touch her little face and tell her it was okay and all over. Her little eyes couldn't even focus and she was just so miserable, but I think that hearing Zeus and I talking to her seemed to calm her a little bit and brought us some comfort as well. She knows the what the words "All Done" mean from having her NAM put in for months at a time and we've used it when we've had to give her medicine in the past, and so as I stroked her little head I kept telling her, "All Done, All Done Honey, All Done." I'd like to think that it penetrated the fog of anesthesia and helped calm her.

Our sweet little sadness as we walked into the recovery room.

There was fresh blood rimming her little nostrils and mouth and she had a long, thick black string hanging out of her mouth. Luckily we'd been warned about the string, so it wasn't as disturbing as it might have otherwise been. The string went through her tongue and was quite a long string. It had to stay in for a few hours after surgery so in case the swelling made it hard for her to breathe, in which case they could use the string to pull her tongue forward to open her airway. They taped it to her cheek and handed her over to Zeus in the rocking chair. Thankfully it didn't bother her AT all. I don't think she even noticed it and thankfully she didn't even move a muscle when the time came to take it out. 

Zeus snuggling and comforting Mia in the recovery room.

They taped the string to her cheek to keep it out of her way until later when they removed it.

Thankfully Papa realized it was killing me to wait to hold her so he handed her over after only a few minutes. Finally it was Mama's turn to snuggle her sweet baby, who was still quite sad and quite out of it.

I snuggled her standing for a moment and then took over the rocking chair. She was still making the saddest little noises and crying off and on, so I started quoting to her from the "The Goodnight Book" that we read that's one of our favorites. I think I 'read' it through at least twice to her as we were rocking and that seemed to calm her as well. Zeus and I both have it memorized so we were able to deliver it to her in stereo.  :) 

We finally got to take her back to the room and snuggle her and after a bit we tried to get her to take a bottle. We were worried that she wouldn't take it, since she wouldn't take it after her lip repair surgery. She surprised us though and took a whole 4 ounces of watered down apple juice. Yay Mia!

Back in the room - hooked up to IV, blood pressure cuff and pulse monitor. They also had a humidifier set up to put out moist air to help with her breathing after surgery.

There was some SERIOUS comforting and snuggling going on. Later I would sleep the night propped in the bed like this with Mia on my chest.

Once she had a wet diaper we were able to get her off the IV drip and take her for a walk in the hall way. This is one of those times when you "smile for the camera" and when you see the photo it feels totally inappropriate.  :(  Sweet Mia was SO not feeling good and there's her dorky mama all smiling for the camera. Oh well...


We walked down to the patient play room to see if we could distract our sad baby, but she wasn't really in the mood so we continued our walk.

Her poor little face was so swollen, especially her sweet little lips, from having her mouth stretched open for three hours. We kept her propped upright constantly to help with the swelling.

Later that day she still had the bloody nostrils and sores on the side of her mouth and lips from being stretched open for so long. We're still putting some nursing/nipple cream (since it moisturizes and protects skin and is okay for little ones to ingest) on them to help with the healing. The surgeon said that they only loose about a teaspoon of blood during surgery which was comforting. Still sad, but comforting that it was such a small amount.

Playing hiding peek-a-boo with her Tia Hilda.

That day was was long and very tiring, but Mia started eating (though not drinking as much as we'd like) better. She ate a whole container of applesauce and later a container of vanilla pudding. We were able to get her to drink a little bit of vanilla Ensure from an open cup that night. It was messy, but worth it, and considering she'd just had surgery on her little mouth, she did amazingly well. We were allowed to give her anything that you could easily squish between our fingers, and were told to only feed her with plastic spoons. I was surprised because a lot of other moms reported only being able to feel their little one's liquid for days after surgery and also had to use a syringe hooked to a soft feeding tube to feed it to them. We used her regular bottle and her little plastic baby spoons starting that same day.

Besides surprising us with her good eating, she started babbling again and we noticed that her voice is deeper than it use to be. It's still super sweet and still endearingly Mia, but there's a definite change in tone. We aren't sure if it's due to the newly closed palate or from surgery or a combination of the two. We'll have to see if it changes at all once swelling goes down.

All went relatively well during the night. Mia would start squirming and stirring on my chest about 30 minutes before it was time for her pain meds. I would comfort her until they came with the medicine and then snuggle her back to sleep on my chest. I was terribly worried that she'd startle or roll off of me in the middle of the night, so needless to say I didn't sleep all that great, but was glad of the comfort I was able to offer. With a good night behind us and no complications, we were able to leave the next morning. Thankfully Mia slept for two of the three hour drive home. When she woke up, I climbed in the back with her and fed her a Gogurt and then got out some books for her to look at. I'm so glad she still loves books!

Checking out one of her new books.

Looking at her you would never think she'd just had a three hour surgery the day before.

We stopped in Bastrop on the way home for lunch and Mia finished most of a container of mango baby food. Such a little trooper!

Passed out on Mama for another nap once we got home and administered her next dose of pain meds.

Later, she started running a low grade fever, so we stripped her down to help her cool off. She was so happy to be home and seemed to catch her second wind. She was crawling all over like crazy and playing with all her toys and even pulling herself to standing.


Man, NOTHING keeps this sweet girl down!  :)