Post Surgery

Well it has been almost 2 weeks post surgery now. What a crazy two weeks it has been. Adley refused to sleep through the night or sleep in her crib for that matter until two days ago. So this by far has been the biggest struggle we have had since surgery.

But lets talk about surgery. I did not sleep the night before of course I already knew I wouldn't. I wish I would have because by the time I got home the day of I was absolutely exhausted. Adley did great during waiting I was expecting her to be super fussy since she could not eat but all the new people and new places kept her entertained. At 630 they called us back, they got her in her little hospital gown and weighed her. We watched some Curios George in the room, the nurse came in and checked her out then anesthesiologist came in as well. Then the she was laughing and smiling at all of them, so they had a little fight over who gets to carry her back. That is when the water works started for me, I immediately started crying when they got the blanket to come wrap her up and carry her off. They had told us to expect 4 to 5 hours of her being back there so I was surprised to see Dr. T walk in the waiting area just after 2 1/2 hours of her being back there. He said everything went perfectly. I was so excited to get back there and see her, when we went back she was still really out of it they had her laying on her tummy, and she was kinda of making nosies it was a little heart breaking but she looked great. I knew Dr. T was awesome but it is still amazing to the work he does and how amazing it turned out. We were in recovery maybe 20-30 min when they packed us up an said we were ready to go. Adley slept all the way home, but as soon as we got home she woke up in pain. (we had a little issue getting the pain meds since they didn't give us a script until we left.) Next time I will have it called in the day before and go get it. So after I got her meds and finally got her calm we had a good afternoon  though she did not eat very much she did not seem to be in a lot of pain. She had 2 ounces of apple juice at the hosptial and maybe two more by the end of that night. The next day she would drink but she would only drink apple juice. So I started mixing apple pedialite in with her formula or breastmilk kind of tricked her into eating. We did this for 5 days and then finally she would take her milk without the pedialite mixed in it. The thursday after surgery we realized Adley had pushed out some stitches in her lip and it kind of split in the middle. So we went to Dr. T that day and he says it happens often, that it is hard to keep babies from playing with the stitches with their tongue. That it should start to look better when the lip drops more, if it does not he will put a few stitches in it at palate repair. No big deal, and he cleaned out her nostrils while we were there because I was way to chicken to do it myself. She has one little bitty stitch sticking out of her nose and it has drove me crazy ready for it to dissolve. He said everything was healing great and he would see us in a month!

Other notes... I would order better No No's than what the hospital gives you. These are terrible and adley can get them off in a few min if i am not watching her. She is not a big fan but we are almost done with them so that is great!!! I think there is a few sights such as www.snugglewraps.com

So here are all of her pictures starting with the recovery room on... they are pretty much in order.

She could get her No No's off and she would try to eat them... 

It Was Not Easy But It Didn't Kill Us

Well we made it through the NAM and as I look back asking myself the question would you do it again? Would you do it again if you had too? Well I am going to say YES! It wasn't that terrible. And if Adley's cleft is something genetic and we happen to have another cleft baby then I will do it again. Now with that being said I am going to say there were days I called my dad and said I broke the NAM I need super glue and by the time you get here it may not be able to be fixed. Also, days that I called saying "Jason is working late and your granddaughter will not let me tape her I suggest you get over here fast." My grandma stayed with us in the beginning to help me with everything. And there were plenty of times that I would have to walk off after taping in the beginning because adley was screaming and I felt so bad. I would go lock myself in my room and just wait for her to calm down because I felt terrible for making her scream like that. Then did it become a game! yes I would play with her as I taped her and she would laugh! I would put a piece on and say "I got you" did she still fuss when I actually put the mouth piece in. Yes but it was a quick fuss and then she was over it. She learned to love the NAM. She was always smacking on it.. and of course loved to pull it out just to make mommy crazy. So with all that being said the NAM was an adventure. With lots of WORK, good days, bad days, days that I just let her go without, days she wouldn't go a min without it in, one night she screamed until i put it back in even though it had rubbed a sore in her nose, so I just bent the nose pieces up and put it back in. So I guess with that being said I pray to god if and when we decide to have more children we dont have to do it again but in the spectrum of things "It didnt kill me"...

Now the things we could have never gone with out...

SKIN PREP bought on Amazon
and
Detachol also bought on Amazon.

We did skin prep before we put the tape on and Detachol to get the tape off without tearing up her face.

So now its surgery time...

Today is wednesday and surgery is friday! I have started packing a bag even though its outpatient I packed some things for me as well in case we have to stay. A special thanks to the other cleft mom's for the what to pack ideas.

Whats in our bag:

5 sets of Jammies (in case she has nose stents I don't want anything to go over her head another family had an accident taking off a onesie and we will wear Jammies as long as she has nose stents to avoid that.)

2 Blankets

Her favorite Minnie Mouse blanket her Aunt Cortney made her

Her bear violet that came from another special cleft family gave us! Thank you (Trey, Lindsey, and Kiptyn). She loves that bear!

The projector toy that projects pictures on the ceiling.

The Soothing vibrating lady bug by Eddie Bauer.

Mommy a set of Jammies an clothes.

All these things can be washed if they get blood on them!!!!!

Emotions:

Adley has been the happiest baby this week so it has taken a big toll on me. She just doesn't have a clue what is happening friday and I feel so bad for that. I have not slept very well, I have kissed her as much as I can, made her smile as much as I can, and held her all week. I have stayed up looking at the monitor, I have cried, and I have been very excited. I am going to miss that big wide special smile so much, but I am going to love her new smile too! I am so lucky to have a baby that can have two smiles for me to fall in love with.

We have said our prayers and so have many of you! So we will just continue to pray that everything goes smoothly, the doctor does a great job, and we have great results with little pain.

Friday is the big day I will keep all of you posted on facebook of how things are going starting at 5 am when we get to the med center.

Pictures From The Dentist!

Here is how the NAM worked for us. This is the best thing we could have ever done for our daughter. We are so grateful for Dr. A and her team this last 4 months at UT Dental school in the med

center! Modern technology is amazing... The NAM did a lot of work but the tape is what moved her side lips! I am going to start here with day one! These pictures start with the day we were molded for the NAM. Ps! In most of these pictures adley had terrible baby acne for the first two months poor girl. 

9-26-12 Adley was 9 days old!

So between these pictures and the next they made the NAM, we got it the following Wednesday, the first week we only put it in during feeding, the second week we learned to tape, and when we took the 2nd set of pictures we had only done 1 week of taping 24 hours a day.


These pictures were taken on 10-17-2012... Adley was 1 month old...

These next pictures were taken on 11-28-12... This was 7 weeks of taping... Adley was 10 weeks old. 

SEEING A DIFFERENCE YET?????

These picture were taken on 1-2-13 adley was a little over 3 months and 2 weeks old. @ 12 weeks of taping. 

These next pictures were taken on 1-9-13 Adley was 3 months and 3 weeks old... This was our very last dentist appointment :(. @ 13 weeks of taping. We have surgery in 9 days from this appointment on 1-18-13 to do the lip repair. We will continue to wear the device until the day of surgery! 

Its amazing the difference this has made. We are so excited to see what surgery brings. and the outcome of everything. 

Next blog- MISC... Things we learned along the way, products we found helpful, things we did, what adley has been up to! STAY TUNED! 

Molding? NAM? What does all of this mean!!! Plus Photobomb!

Ok! Moving on! What is molding? And what is a NAM? well if you live around my house or visit often you know the word NAM heck I think my nephew can even say it!
The NAM is the Nasal Alveolar Molding Device!!! Now you know why we call it a NAM!
Now I am going to copy and paste this part because it is easier!

A custom-fitted denture (molding plate) into the baby's mouth. Every week, careful adjustments to this molding plate gradually reshape the roof of the mouth and gum lines. The plate causes the bones of the upper jaw to grow toward each other rather than to grow farther apart. It also provides a barrier between the mouth and nose, which are open to each other in babies with cleft lip and palate. This can make it significantly easier for the baby to eat. Once the gum line is in closer approximation, a nasal extension is added that raises up from the forward edge of the molding plate and lifts the nose and nasal cartilages into place. This technique is especially important for children with bilateral clefts of the lip and palate. Effective application of this technique optimizes the initial surgical results and may even minimize the need for later "touch-up" surgery.

Wow I am so glad someone else typed all that out! This is what our NAM looks like. We started out with just the pink part and then we added the nose stents as you will see in the photos to follow. And I am very sorry but its not the easiest thing in the world to take a picture of!!!

This is the front of it...

 The Front!

The Back! So this is the part that goes in her mouth!

The first time you get it without the Nose stents it looks like this when its put in...

THIS IS MY FIRST DAY WITH NOSE STENTS...

Different NAM pictures.. My newphews are making their blog debut too!

 THIS IS WHAT IT LOOKS LIKE WHEN MY TAPE IS LOOSE AND I NEED TO BE RE TAPED...

THIS IS WHAT IT LOOKS LIKE WHEN I GET MAD AND PULL IT OUT!!!! Sometimes I dont mean to but my little fingers wrap around the Stents really good!!! 

NEXT Blog I am going to show you the pictures from the dentist office and all that it has done...

Adley Makes Her Grand Entrance Into The World

Well It was Sunday September 16th I was due on the 19th. I was officially ready to have this baby. We woke up at 4am to take a friend to the airport. I was driving so I figured what better way to wake up than to take a shower and get dressed so I got up at 3am. I showered and dressed and got ready... here is the TMI part. Lets just say as was getting dressed my pants got a little damp... everyone know pregnant woman's bladder is not the best so I never thought my water broke. I mean come on less than 15% of women's water actually breaks I highly doubt I would be in that category. Drove to the airport as my husband slept and our friend was half awake half asleep in the back seat. Had contractions all the way there and all the way back. We stopped in cypress and picked up donuts, as soon as I ate the contractions stopped. Go Figure! We got home about 630 and slept till about 11. Within the rest of the day I walked over a mile in front of my house, cleaned up and organized around the house, did the everyday laundry, bounced on my exercise ball (This thing was my best friend I had some serious sciatic nerve pain and boy did sitting on this ball help). Finally it started raining and my husband and I were just enjoying the day we were standing out under the carport just talking about landscaping ideas etc. and watching it rain. It was dusk and starting to get dark. Finally I said lets get in the Jeep and go for a ride!! Heck it will either put me into labor or I will catch or give me pneumonia. So we hopped in the jeep and rode around for about an hour!!! It was so much fun we really enjoy riding in the jeep! We got back to the house and I was going to take a shower because I was soaked in rain water. As I got undressed my water broke. Yes, I was part of that 15% whose water actually breaks! After I finished showering and getting dressed I called a friend to make sure thats what I thought It really was. I straightened my hair and made sure everything was packed. I told Jason and my grandmother to get in the truck, but I WAS DRIVING. I like to drive everywhere and there was nothing different today. We headed to the hospital entered through the ER. Where we seen Jasons Aunt Diana and Uncle Mike who where there with her mom. They made me ride in a wheel chair upstairs! And yep for sure my water broke! We were staying! They started me on some pitocin and we waited for Adley to get here. Here is a picture of me in our drive way at 38 weeks!!!!

She didn't arrive until the next morning around 11.
All of the fears, questions, and worries I had didn't matter anymore because she was here and she was the most beautiful little girl I ever seen. She immediately stole my heart. She is perfect.
Here is her at the Hospital...

Here she is 7 days old!

Here she is again at 3 weeks old!

Ok! Now that she is here we can move on to the cleft Journey. The "NAM"!