Lilypie Second Birthday tickers

Lilypie Second Birthday tickers
Showing posts with label pre-op. Show all posts
Showing posts with label pre-op. Show all posts

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!  :)

Saturday, November 13, 2010

Surgery - Deep breath... exhale slowly....

Man, what a crazy whirlwind week we've had!  On Tuesday we left Austin for Houston to visit with a cleft team at the Shriner's Hospital there in Houston.  They'd accepted Mia to do all of her cleft lip and palate treatment free of charge so we thought we'd at least check it out.  We looked up the doctors online and they both checked out great.  Shriner's paid for our hotel room where we stayed Tuesday night.

At the hotel - Mia checking out what papa's up to.

We went in first thing Wednesday meeting to have them give Mia a mini-physical and to meet with the plastic surgeon there. While waiting for our appointment we met a mom and her 12 year old son who was also cleft affected and she raved about Shriner’s and what great work they did. She had her son come over to show us his repair and you could seriously not even see the scar on his lip unless you really looked close.

Well, after we met with the surgeon, we felt good about it and decided to go ahead and schedule with them. They had said they’d probably not be able to get her in until the beginning of January, but then the plastic surgeon said that maybe they could try and squeeze us in in December if our schedule was flexible. We told them it was. The plastic surgeon went on to meet with the next patient and the care coordinator left to go and look at the surgery schedule to see when they could fit us in. We knew the surgery would be on a Thursday because the team is rebuilding after being moved from Galveston after the hurricane, so they have cleft clinic on Wednesdays and cleft surgeries on Thursdays. Well, a few minutes later the plastic surgeon popped his head in the door and said, “Would you be able to stay, check into the hospital today and do surgery tomorrow morning?” I guess the original patient had just barely tested positive for strep so they couldn’t do their surgery and the “back up” couldn’t make it so the spot for the next day happened to open up while we were there.

Our heads were spinning as we agreed and started the paperwork for admission into the hospital. Wow!  While we waited for the admission paperwork to get finished up we got to meet a little four month old baby boy who'd had his unilateral cleft repair done three weeks before and was in for his post op follow up.  We also got to meet and chat with a nineteen year old girl who'd been born with a bilateral cleft just like Mia.  She'd just finished her last treatment and looked really good!  It was nice to see different kiddos who were at different phases in the cleft repair process.

Reading with mama while we wait for all the paperwork to get filled out.


They admitted us to the hospital floor and then we had to just chill at the hospital for the rest of the day.



Here's Zeus in our room and Mia's cage-like crib for the evening.

Mia and I - when Zeus was holding her against him, somehow his visitor tag ended up on Mia's tummy.  We had to get a pic!  :)

Shriner's sees a TON of children every year, so they started doing a visitor tag ball each year.  They start with a tennis ball and throughout the months, people put their visitor tags on it as they check out for the day to show visually how many families they help each year.  At the end of each year they start over. 

Mia and I posing with our visitor tags and the visitor tag ball for 2010.

Family photo with Mia holding our tags, right before we helped her stick them on.

Chilling out on the patio and snapping pictures of the precious little face that would be changing so drastically in a few short hours.  Man we love this little one!!!  :)

Couldn't take enough pictures of her wide little smile that we would miss so much.

I was so upset that we didn't know we were having surgery and so I'd left the NICE camera at home!!!  Thankfully I keep my old digital camera in the diaper bag as well as a set of back up batteries that barely lasted until we made it home.  Lucky break that!

Giving Mia a pre-surgery scrub bath at the hospital - we had to do one the night before and one that morning.

Mia and I in her Christmas themed surgical gown the morning of surgery - all scrubbed up and ready to go!

Chewing on her toes one last time as we waited for the doc.

So incredibly sweet and happy in the morning!

Smiling with papa - sorry honey about my sub-par photography skills in this one!

Snuggles to sleep with mama while we wait for surgery time.

Following the nurse down the hall to the pre-op area.

Nervous smiles from mama and papa before they take our sleeping angel into surgery.

Zeus and I were absolute bundles of nerves during the 2 1/2 hour long surgery, even though they came in a few times to give us updates that all was going well. 

They gave us a pager that they said would go off when they were about ready for us to go into the recovery room.  We were told to have a bottle ready when for the recovery room so that she could eat right away if she wanted.  Well, we figured we'd have a second to run and make a fresh one when the pager went off.  We would have made it ahead of time, but Mia won't take a bottle if it's not really warm.  Too cold and she'll fuss and refuse it.  Anyhow, they came to get us BEFORE the pager went off, so Zeus went ahead into the recovery room with the camera as I tore down the halls to grab her bottle and run back. 

It was HORRIBLE not to be able to go straight back, but I had been the only one able to go back when she had her pre-maxillary tooth removed plus I'm fastest at making bottles, so off I ran.

Zeus's first view of Mia when he got back there, all wrapped up in warming blankets from surgery, and right before he was able to hold and comfort her.

My first view of my sad little red (from all the heating blankets) baby girl.

Mia was super-duper sadness after surgery and just continued making the quietest little sad cry you've ever heard.  She wouldn't take any of her bottle so we just patted and cooed and comforted and patted her and rubbed her sweet little head.  It was heart breaking seeing her that way and not being able to make it all go away.

Most of the first day she would hardly eat anything and would just sadly fuss.  About the only thing that seemed to calm her down and sooth her was to walk the halls with her.  We ended up doing that most of the afternoon and evening, either carrying her in our arms or pushing her in the stroller.

I'll post more later, just wanted to get the beginning down and let everyone know that Mia came through surgery just great.  Thanks so much for all of your thoughts and prayers on her and on our behalf.  The first few days were so hard, but we are thrilled to say that she's slowly improving bit by bit.  She finally slept through the night again last night and has even started cooing again and attempting a smidgen of a tight little swollen smile.  She's definitely not back to herself yet, but she's on her way there - yay!  More pics and info later, as it's just after midnight and I'm exhausted to the nth degree.