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!  :)

Surgery Date

Yesterday I called Shriner's and left a message to let them know that Mia's weight was 17 lbs 6 oz at her one year check up. I wondered if they'd want to wait until she's older and 18 lbs to do the surgery or if they'd go ahead and do it since she's close and already a year old. I was a little worried that waiting longer for palate surgery could result in speech delay, but also want her as healthy and strong as possible prior to surgery.


I got the call back from Shriner's today and we have our surgery date. The doctor feels that she's close enough to 18 lbs to go ahead with the surgery.  We will go in on Wednesday, August 24th for her clinic and pre-op appointment, surgery will be the next day and will head back home on Friday. The nurse said to be sure and try and pack on as much weight as we can and to keep her as healthy as possible. If she gets sick, they won't do the surgery and it will have to be rescheduled. She'll be the second surgery of the day so it will be interesting to see how she does with the pre-surgery no food and liquids thing now that she's a little earlier and more vocal about things. They will be doing a little baby girl's lip repair surgery right before Mia has her palate done. I was so looking forward to having this surgery over with, but now that we have a date and a count-down, I feel sick and anxious about having my sweet baby have surgery again and having her be in pain. I'm so glad it can be done when she's young enough that she shouldn't remember it when she's older.


So now the count down begins. 35 days until palate surgery.

First Birthday Videos

Finalizing plans for Mia's little birthday party this weekend.  I can not wrap my mind around the fact that my precious baby girl is going to be one, ONE, on Thursday.  This time last year I was wondering if she was EVER going to come.  I'd been SURE that she was gong to come early and was even more bummed when my sister, who was due a week before I was delivered early and then my own due date came and went.  My little "over-baked" Mia made her grand debut five days late and with peely little hands and feet from hanging out in there too long.  :)  


In preparation for her birthday I decided to put a few of the THOUSANDS of photos we have of our little Mia to music.  These four videos were the result and I'm going to loop them together to play at her birthday.  Sorry that they are long, but what can I say? - I'm a proud mommy who's beyond infatuated with her precious baby girl.  :)  

Perfect Beauty

Isn't She Lovely

We Believe in You

(Man, I'm bummed this is blocked.  Sadness, it's a good one!)

Just the Way You Are

I can't believe how much she's grown and changed over the past year!  It was such a heartwarming trip down memory lane to look though all of the photos and choose out some of our family favorites.

We love you Mia!!!

June 30, 2010

Mia Angelina arrived two days ago - 4 days past her due date, at about 1:21 pm. She weighed in at 7 lbs. 10 oz. and was 19 and 1/4 inches long. As anticipated, she was born with a complete bilateral cleft lip and palate, but couldn't be more precious! Her much anticipated debut finally arrived and mommy and daddy are so thrilled to have her be part of our little family!

Brand new baby Mia. Mom and dad barely got to see her before she was rushed off to be checked out thoroughly to make sure everything was okay. It kind of freaked Zeus and I out, and we would have LOVED to see her longer, but we definitely wanted to make sure she was okay first!

The handsome papa, getting ready to meet his baby girl for the first time.

Brave mama, prepped and ready for c-section. Zeus and I went in on Monday, June 29th to be induced and things were moving along, but then didn't progress with dilation as fast as they'd like, especially after my water broke, so we ended up going c-section. I ended up having to have 2 epidurals prior to that because something happened and the first one stopped working or wore off. They were worried that Mia might be too big to deliver or that my internal bone structure might be too small to deliver her that way, so we ended up having a c-section. Bummer to experience both labor AND a c-section, but she is SO worth it. For the c-section, I didn't even have my arms strapped down, which I thought was something they always did - guess not! Was SO glad to have Zeus there with me!

Sharing a special moment with our new baby. Mama and papa love each other, sweet girl, and we sure do love you too!!! You are SO very precious to us already!

A quick smile for the camera during snuggle time.

Tired, and soon to be feeling very sore mama along with very proud, very brave and supportive papa.

Bright-eyed Mia. Such a skinny little girl, all long and slender. She's got the cutest head of hair, and the softest, smoothest skin mommy has ever felt. Papa is sure you have dark blue eyes, but we'll see if they stay or change to brown like mom and dad's. :)

Mia's hands look so tiny in papa's big strong fingers!

Mommy cried when she FINALLY got to hold and snuggle Mia the next day! It was so hard to wait for recovery to visit you in the NICU. What a silky, soft, beautiful little girl she is, and so very precious!

Mommy trying to figure out the tricky bottle for Mia. I think Mia's going to have an easier time at it and is a faster learner than mommy is. Maybe daddy will pick it up a little easier than mommy since he got to watch people feeding her that first night while mom was recovering. Whenever I couldn't find Zeus, I knew he'd be in the nursery with our daughter, talking to her, taking pictures of her and/or holding her. Such a good daddy he is already and you are the joy in his heart Mia!

Wires hooked up to Mia for her PCG (pneumocardiogram) today until 4pm tomorrow in the NICU. They are trying to figure out for sure why her oxygen levels sometimes fall too low. They are thinking that when she's really deep asleep, her tongue relaxes and falls back, cutting off her airways. Because of this, she may have to be put down on her tummy instead of her back is all that we know right now. She's got little sockies on her hands because she keeps scratching her little face and we haven't had time to trim her fingernails yet.

Proud papa and his baby girl. I hadn't realized it until he mentioned it tonight, but he was always WITH Mia while I was recovering and then took pictures of US when I could finally see and hold her, but there was no one to take pictures of HIM and Mia so I snapped a quick one before we had to leave the NICU. Can you just tell she's already got him wrapped around her little finger? :)

How could you not love this precious little face? Mia, it killed mommy and daddy to walk away from you in the NICU while you got your PCG test done tonight and without holding you or kissing you. We will miss you like crazy and even though we can't hold or snuggle you for 24 hours while the test is going on, never doubt that we are peeking in on you constantly and loving you like crazy while we wait through some of the longest hours of our lives until we can snuggle you again. We love you baby girl!

3D ultrasound pics

We had our last appointment with the specialist yesterday. The ultrasound tech, as she was measuring Mia's head said, "Whoa, look at that hair!" In the ultrasound you could see her hair floating in the amniotic fluid off the back of her head. It was the craziest thing! Looks like our little one will have a full head of hair after all! We suspected as much because of the extreme heartburn I've had, but it was so fun to see! :) Oh, I forgot to mention that they estimated her measurement at about 7 and 1/4 pounds, but said that at this late stage in pregnancy it is hard to get an accurate measure and that they could be off as much as a half a pound either way. I guess we'll see how close they were when she gets here!

We were finally able to get to see little Mia's face! :) Usually she has her hands and/or feet up in front of her little face, and today was no exception. The last time we went in a month ago, she constantly had her hands in front of her mouth or IN her mouth and would not hold still long enough to get a clear ultrasound picture. Yesterday, however, even though our little acrobat had both her hands and feet up around her face, we were able to get a peek. As expected, she will be born with a bilateral cleft lip and palate.

These are the first pictures we were able to get where we could actually see the clefting, so though it was disheartening to see the actuality and severity of it, it was also reassuring to know what our baby girl will look like when she arrives. I had been having strange pregnancy dreams about her being born with no clefting, and then other dreams where her little lip didn't have any clefting at first but then she smiled and her little lip split open from the stretching of her tiny mouth. As a mom it's hard to have anything wrong with your child and you wish you could take it from them and go through it yourself. Though Zeus and I will not be able to take this from her, we will definitely be there all along the way with all the love and caring and support in the world.

Here are the ultrasound pics. I haven't gotten the scanner set up yet, though I think I finally found all the cords for it as I've gone through more boxes. So, these are some crummy low-resolution ones that we took with our cell phones until I can get the originals scanned.



These are the same photos - from different phones. It shows her little hand and leg/foot up around her face, with her mouth open to try and get those toes in! :)



Again, two photos from different phones. You can see her little hand and foot again up by her face, this was taken right before she realized her foot was close enough to tickle her cheek and before she decided to try and suck on her little toes! :) The white highlight on her lip is where they put the little pointer arrow to show the protrusion from the clefting in her lip.

Here are the last two of her little face. In the second one you can see her little shoulder and arm wrapped up around her little body.

Can't wait to meet you baby Mia and see how much you actually look like your ultrasound pictures. Your cousins Nathan and Christopher looked similar to their ultrasound pics, but quite different as well, so we can't wait to see you first hand baby girl! We also can't wait to rub that full head of hair and kiss your little face!!!

Baby Mia the Acrobat

We went into the specialist on Tuesday, February 22nd to find out more about how Mia was doing. The doctor last week was worried because they couldn't see the line across the upper lip on Mia and were worried she might have a cleft lip and or cleft lip and palate. Here are the pictures we got from the specialist. It was so fun to see Mia again and to see how quickly she is growing and changing!

At first the doctor couldn't get a look at her little face because she was turned around and had her hands up in front of her face. That seems to be one of her favorite positions. :) It was snowing that day (yes, I am STILL in Texas) and so they were short staffed. Since Mia wasn't cooperating, the doctor left to finish with another patient while we waited to see if Mia would turn or not. Zeus and I were shaking my stomach trying to get her to move around. :) I also turned to the different sides for a little bit at a time and we took turns rubbing my belly. That must have done it because when the doctor got back in Mia had changed positions. We felt a little bad when we saw her new position because it didn't look at ALL comfortable as you can see below, poor thing!

For those of you who have a hard time seeing anything besides static in an ultrasound, this picture above has Mia's head on the right, her bum on the left, and her feet stretched up over her head! We have decided she must be some kind of acrobat and that she has her momma's flexibility. :) Because of the angle to get her profile, you can't see her little arms in this pic, but they are ALSO stretched up over her head, almost like she's playing with her toes. We now refer to her as Mia the Acrobat.

Here's her little face looking directly forward, head on the right and torso on the left.

Here's Mia's little profile picture. In this picture you can see that her little upper lip isn't defined under the bump of her nose. We found out that our sweet baby girl does indeed have a cleft lip and palate. The term for her kind of clefting is called a bi-lateral cleft lip and palate. This means that she has two clefts, one from each nostril. I think we were a little in shock at first at the news. We knew it was a possibility, but to see the evidence and to hear it specifically diagnosed was hard to hear because we wanted everything to be perfect for our little Mia. It breaks our hearts to think that our sweet little baby girl will have to undergo surgeries and be in any kind of pain, but are grateful that so much is known about these issues and that they know what surgeries to do, when to do them, etc.

The specialist also said that with these babies that have the clefting, there can be other things going on with them to - a lot of what they call mid-line issues with other things along the midline also having problems. They checked her little hands and legs, fingers and toes, heart and brain, head, etc. There can also be something else called Trisomy something that can cause lots and lots of problems too. Everthing looked good so far with Mia and we are SO thankful for that!!! We will still go into the fetal specialist once a month too for full scans to continue to monitor Mia and her growth. It will be fun to get to be able to see her so much, because you usually don't get that many ultrasounds. They will also be doing 3 and 4D ultrasounds so we'll have a pretty good idea of what her sweet little face will look like before she's born, and to find out more about the clefting. There will also be a team of specialists to evaluate her shortly after birth who will be able to do a full evaluation. I asked about feeding issues, and the doctor said that quite often these kiddos are still able to nurse, I guess because of the flexibility of the human breast they are able to get the nipple far enough back in their little mouths so that the milk doesn't go up into their sinuses. She also said that it's about the best thing for them too. We're hoping and praying that Mia will be able too. It will be so good for her, and also make it one less thing we have to be juggling. Cross your fingers for us!

Zeus and I have been reading up on things and looking up pictures online and though it was hard to see in some ways, it was so reassuring to see what great things they can do to fix the clefting. The specialist who let us know that it was indeed a cleft lip and palate was so extremely comforting and sweet. As she was talking to us about things and reassuring us, she would keep putting her hand on my arm and rubbing it or stroking it as she told us everything was going to be okay - that she would still be perfect and beautiful and that it was really such a small thing and it can be so easily fixed. She showed us some pictures of what babies can look like that are born with clefts like Mia's to help prepare us for what our sweet baby girl face may look like when she's born. Such a sweet compassionate lady and I feel grateful to have such great and caring doctors! She said that we would be in her thoughts. I really like her.

We're not sharing this so that any one will feel bad for us or our sweet Mia, but to include those we love on this new journey in our life. Zeus and I are SO excited to be welcoming baby Mia into our family!!! We can hardly wait to meet her and to kiss her little face and snuggle her in our arms! We love her so much already and know that our love for her will only get stronger and stronger! We are so greatful that she is being sent to a family where this news doesn't change in the least the excitement level with which we welcome her to our family, in how much we will love or cherish her or in how she will be treated or cared for.

We love you little Mia Angelina Moreno and can hardly wait for the end of June when we will finally be able to hold you in our arms and snuggle you to pieces!!! :)