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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!  :)


  1. Her sad, swollen face! I love the pictures and am so happy she is doing so well! I hope she continues to feel better each day! I had to laugh at the story of you and Zeus heatedly fighting over who got to see her first and then the picture of him sitting by the door in the tiny chair. I can totally picture it! You both love her so much! I also love the pictures of Z with Mia. You can just see the love on his face! Love and miss you guys loads!

  2. Glad she is doing so well! You sure are lucky the docs let her eat solids (mushys) directly afterward. I think Kaylee would have done well on them if they had let us! In any case, gratz on the palate surgery being over and done with, and way to go Mia for being such a strong girl!

  3. Awww those pictures right after surgery are so sad! )o: poor baby!! Good thinking in posting fun sweet happy girl Mia pictures at first!! (o: Glad she is doing so well and eating!She's tiny but sure is a tough little cookie!!!

  4. Wow...thank you for this. We have this coming up in two months. In some ways it seems like the first surgery all over again but in others I worry she will hurt more or be more mad about wearing the no-no's. Glad to see you all survived. Prayers for continued healing.

  5. I absolutely love this! Mia is such a sweet, beautiful little girl. I loved all the pictures! We use the Shriner's in Chicago and love them...looks like Houston does amazing work also!

    Xaiden's Momma Kim