The Big Things Of 2013!

So BIG things happened in 2013, including me falling off the bandwagon of blogging! Well we are back and as the last post said we hope to get at least twice a month post up!

So in August 2013 Adley had palate repair! Everything turned out great! It was an adjustment getting back to a good routine and sleep schedule but it finally happened! We also had issue adjusting to food. Adley never had food before palate repair. She hated everything I gave her and would cry hysterically! So yes your kids can survive until 1 without baby food. It was a slow but steady pace getting her adjusted to different textures and she still isn't a big fan of everything. She is kind of trying different things she just has to do it in her own time.

September 2013 Adley turned one! Yeah! We had so much fun! She had a Minnie Mouse Party! My Sister (the artistic one) helped me decorate… It was a lot of fun. We had a waterside the kids loved it! It was definitely a big event! I will add photos in at the end!

At the end of the year we also had some fun things happen to us to! Thanks to another Cleft Family who has helped raised so much awareness for kids like Adley and their son Keane! We are so blessed to have met this family and been involved in helping raise awareness with them. The Myers family has definitely been a blessing for this Cleft Community! They so sweetly mentioned Adley in an ESPN article! (Already printed and in her baby book! WINK!)  Which is just Cool and we were featured with them on the Today show! Which is so cool too!

Link entered here:

http://espn.go.com/blog/nflnation/post/_/id/83904/for-chris-myers-life-is-full-of-love-smiles

http://www.today.com/video/today/53433653

Thank you so so much Myers family! Chris, Jenny, Makenna, Calin, and Keane! What a blessing y'all are! The lord knew what he was doing when he made y'all apart of our Cleft Family!

Now to end the year!

Adley has done great we are doing speech therapy twice a month and she can sign almost 15 signs as well as say about 7 words! We had an amazing Christmas! Adley got a baby grand piano from her Uncle and Aunt and she loves it! I will see if I can upload a video of her playing it!

Ready for exciting things in 2014 and more Blogging! 

The Hardest Part of the Journey…

So this is a Blog I have been meaning to write for a long time. It will probably be the hardest blog I have every written and the longest with a little random rambling. This will be the first time I have said this out loud in front of people other than my Cleft Community and finally after two years I can talk about it with anyone. I have my box of tissues, you better grab yours.

So I always get questions from other moms about… how did you feel when you found out? What happened the next few weeks? How did you feel leading up to delivery? I think these are all important questions and the hardest part of the Journey personally. I think you are overcome with emotions, on top of being pregnant and hormonal and you just don't know how to sort through them. Or if what your feeling is normal, horrible, or just plain crazy. So I am going to talk about how I felt leading up to Adley getting here after finding out she was going to have a cleft.

So in the weeks leading up to finding out about Adleys Cleft. Life was good, I was having a baby girl, and she would wear huge bows, I would dress her up, and buy her lots of shoes, she was going to be "Perfect"! I was headed to the doctor for an ultrasound…

So the doctor is there with the wand on my baby bump messing with her trying to get her hands out of her mouth, and she looked and looked and never once did the words that were fixing to come out of her mouth cross my mind. NEVER in a million years did I think I was going to hear something like this, I mean honestly no one does unless you have already been there before. She pulls the wand off for a minute and tells me "Brittany I am 90% sure your baby is going to have a cleft lip." She kept telling me "it will be ok, and we needed to go double check with a Maternal Fetal Medicine Doctor". I really don't think those words registered in my head for at least 2 min and then I just cried, and cried, and cried until I could hold it together long enough to walk out of the office then I got in the car and cried some more. And the 40 min car ride home was some more crying. . The girls in the office hugged me, my grandmother hugged me, she held my hand when I called my husband, he told me it was going to be ok, even when he got home and hugged me NOTHING and I mean NOTHING at all could make it better. I cried 5-10 times a day for the next 6 days. My heart was broken in to a million little pieces. Shattered like glass on the floor. I wasn't going to have that "Perfect" baby that I thought I was going to have a week ago. For 6 days it was the most earth shattering, heartbreaking thought that went through my head every min of each day.

And then, I picked myself up and said "Suck it up buttercup"! You need to get prepared, and which we did, researched Cleft Teams, seen the Maternal Fetal, etc!

BUT, that doesn't mean the heartbreak stopped there. I would still secretly cry, I would cry on my husbands shoulder late at night, I would wake up crying. It is the hardest thing knowing that your child is going to struggle, knowing that life in the womb is perfect now but when they get here they could struggle to feed for weeks or months until surgery. That your child will face the most difficult challenges of being bullied in school later in life, being made fun of, being left out, etc. Knowing that your child will hurt or have their feelings hurt at one point is heart wrenching.

Then, comes all the other emotions. I will write all the questions I secretly asked myself in the weeks leading up to her delivery. I didn't share these questions with others because I thought I was crazy and a horrible person to ask myself any of these in the first place.

Will I love her face? Will I think she is beautiful? Will I be scared when I see her? What will my family say? Will others just say she is beautiful to make me feel better? Will others stare at her? Will I be comfortable with sharing her pictures? Will I hide her face? How will I tell others that we know she is going to be born with a cleft? Do I take newborn pictures? Do I keep these pictures locked away? Why my baby? What did I do to deserve this? What did she do to deserve this?

YEP, thats right everything a mother should never think, I thought out of pure fear! I beat myself up over and over for thinking these things. When I was home alone I would sit in her room and hold her stuff and just cry because I thought what a horrible person I am for asking myself these questions, for even thinking these thoughts in my head. HOW COULD HER MOTHER THINK THESE??? Well I am here to say it happened because I was scared to death, no matter how prepared I was, no matter the amount of support I had. No matter how much research I had done. I was SCARED and it is completely normal to have crazy irrational thoughts when you are in a situation like this. I no longer beat myself up over it. I understand it was my brain dealing with the situation if you will say.

 When my water broke and I was going to the hospital I could feel my heart beating I was more scared about meeting her than I was labor and delivery….

AND THEN….

Adley made her grand entrance into this world, they laid her on my chest and she was the most beautiful thing I had ever seen in my life. She stole my heart, and my fear. There was nothing that little girl couldn't do. She crushed that feeling a being scared into millions of little pieces. I didn't care what others thought about her and I wanted to shout from the roof top and give away pictures to everyone I seen of my little girl! That right, My PERFECT little girl, that would play dress up, wear huge bows, have lots of shoes! All of those she has done! The moment I held her she stole my world, and all those questions from before didn't matter. She was PERFECT. 



Note: I quote "Perfect" in here a lot because its something that has a new definition to me. Its so hard for me to deal with choosey parents, parents who just aren't satisfied until they have that girl, or boy. Parents who are upset when they find out its the opposite sex of what they want. Parents who don't understand that gender, or anything else they want "selfishly" is NOT the definition of perfect. God gives you the perfect child, or children for you. Do not question it or try and change it because you will one day see his reasoning. It may not be what you thought it was going to be, but he taught me a big lesson with Adley. I have made relationships with other moms, surgeons, doctors, that I would have never made if I didn't have Adley. I would not chose to change one thing about her, she is the perfect child, and the perfect child for us.

Getting Back in the Blogging Groove!

So I have kind of fallen off the band wagon with blogging and I have decided to get back to it this year!
So I was going to start at new years but we had a crazy start to our year. New Years Eve my husband and I had the terrible stomach virus we got from Adley who had it a few days before. Then Adley and My Husband got strep throat. Then we all got lovely sinus infections! So I am hoping that the start of the year was just a little crazy so that we don't have to worry about it for the rest of the year! I sure know my pediatrician and everyone in his office was already tired of seeing us! This is going to be an amazing year and my "Goal" is a blog every other week! So Hopefully I will get it accomplished! Going to start working on the next big blog it should be out next week!

Sorry this was short but we will be back with awesome updates soon!


See you next time!

Palate Repair!

Let me start out by saying "I am completely shocked at how amazingly strong my little girl is". Even though I shouldn't be I am!

So we had palate repair surgery Monday August 5th! I am going to share with all of you the craziness leading up to this day and everything that happened the day of surgery and the week after. 

So I was completely sick to my stomach the almost two weeks leading up to surgery. I always get like this. We showed up to the hospital to do pre-op two weeks prior, as soon as I seen the Children's Surgery Unit I immediately got nauseas! My Nanny was with me and she laughed at me because the same thing happened for lip repair. They gave me a date and I immediately thought I had a stomach flu. 

So the next week (the week before surgery) I would make a list of things I needed or wanted to take. I told myself if I started packing sooner than the day before! We would just rent a moving truck and move down there (which is going to be funny when you keep reading). So the day before my husband and I both came down with a common Texas summer time allergy issue. His lasted 2 days mine of course lasted 5! So we were just being lazy the day before and finally started packing about 2pm. 

What did I pack:

For him and I, I packed enough clothes for 5 days! Clothes that could get bloody the first two days! Laptops, toiletries, my husband made me pack some Charmin (he doesn't like the cheap stuff! LOL), When I delivered Adley, Jason had an allergic reaction to the detergent the hospital used so I packed him pillows and blankets. I just took my pillows! Flip flops to wear around the room, cash for vending machines, comfy clothes, just the normal "Weekender Bag"! 

For Adley:

I packed 10 outfits, 10 sets of jammies, socks, hair bows (Necessities), strawberry pedialyte (the hospital only had clear and who likes that??), formula (even though the hospital provided it I am glad I did because they only had two boxes of her kind left) Diapers, wipes, 5 blankets, two towels, her minnie, her monte cleft bear, her 2 light up toys, our life saver THE IPAD! It really seems like more than that but I guess in a hospital room it is cramped so it felt like more. 

We left our house at 4:15 and met my parents down the road at 4:30! My parents and my nanny followed us downtown! We got to the Children's day surgery floor, we got checked in right at 5:30am, watched RIO until they called us back! Once we got back there they put us in a play area, weighed her, checked her temperature, had her put on a hospital gown, Etc. While we were waiting for the doctor to get there we were playing with her! Well there was another family in the playroom with us! They had a little boy about 5! He was coming in to do a sedated MRI or CT I cant remember! He had a brain tumor that was removed and he had some scar tissue that was giving him problems, they were also checking to see if anything had come back! TALK ABOUT GIVE YOU A REALITY CHECK! Seriously our issue was so minute compared to what they had been through. He was so sweet! So were his parents! The head of anesthesia happened to get our surgery that day! Her and her sweet assistant came in looked at Adley listened to her breathe, checked her pulse ox, ran over their check list and they were ready! They gave her some happy meds, Dr. T stopped and made fun of me a little (I am always making him crazy) told me everything would be great and he would see me in a few hours) put her on a gurney and away they went! They were out of there right on time at 7am!

She was finished with surgery by 11am, we were in the PACU for about an hour! The nurses in the PACU are always so sweet! They were holding Adley when we walked back. She was the only patient in there at the time. About noon our room was ready and we headed upstairs to the 8th floor! We were in the Roger Clemens floor of the hospital everything was all about baseball up there. The first day Adley would wake up moaning but I am still not convinced that was from pain. I think it was more from the anesthesia. She was pretty well sedated on Morphine for the first day. She had a stitch that was in her tongue and it was pulled out and attached to her face. That was the worst part. Thank goodness they took it out first thing tuesday morning. They weaned her off the morphine on Tuesday morning as well. She started taking oral pain meds once the oral pain meds kicked in I started trying to give Adley pedialyte by mouth through the syringe with the catheter on the end. She only took about 1 or 2 CC's the first time then wanted a break, shortly after I tried again and she took 2 ounces, then 3 ounces but would not take her cup back that first day. We had a really good nights sleep the next night she slept about 9 hours which she normal sleeps 12. 

Of the things I packed what did we use:

Well my husband and I used the normal stuff for the days that we were there! 

Adley on the other hand used Exactly 2 shirts and 1 pair of shorts. 

Haha! Funny I know! 

Her IV was in her foot so honestly it would have been more of a pain to put shorts on her than not too! 

The first day, she was asleep 80% of the time, and still bleeding so I just let her go without a shirt like I got her back in recovery. The second day she wore a shirt and a diaper, and the third day she wore a shirt, and shorts when we were headed home!!!! 

Catching Up... Where does time go?

Ok so I fell of the band wagon on writing blogs and Im trying to hop back on again. So here we go!

Since I have last talked to you many many things have happened.

Adley healed great! Her repair looks fabulous. She did push a few stitches out with her tongue so she has a little notch in her lip but you cant tell very much.

In March, Adley had tubes put in her ears! They have been wonderful no ear infections since, and we were getting them every two weeks.

Adley is crawling, standing, trying her hardest to walk as well as babbling a lot.

Monday she turned 9 months old and is officially wearing 12 month clothes. Where did my baby go? Wow! Time has flown. We went for her 9 month appointment and our pediatrician Dr. Karr says she is perfect! She just loves laughing at Dr. Karr! So glad we have a great Pediatrician.

Adley has moved completely to a sippy cup! This is required for palate repair with our doctor.

Now on to the big discussion about palate repair...

So at the beginning of June I was trying to set some dates for us to go camping with our neighbors and take a couple other weekend trips over the summer. As well as what to do for our anniversary which is August 14th. So I called the cleft team and asked if there was anyway I could go ahead and get a date so I could make these plans. And if for some reason the date fell within the dates we wanted to go I wouldn't even worry about booking a trip or making plans. So they were ok with giving me the date of August the 5th! Wahoo! We have a date! Oh but a date makes it all so real. It makes your stomach churn just a little. You never want you poor little baby to be in pain. But I have a date so I can not plan a getaway for our anniversary! (She is totally worth missing out this year, dinner will be just fine) I have plenty of time to get prepared with a date!! We were at the hospital 6 hours for lip repair and I backed 3 yep thats right 3 bags! I just wanted to make sure I had everything. This is a 3-4 day stay! SOMEONE JUST BRING ME A UHAUL... :)

THEN YOU WILL NEVER GUESS WHAT HAPPENS NEXT!

The very next day! Yes the day after I get a date! I get a post card in the mail stating the hospital (Childrens Memorial Herman)  and our insurance company (BCBSTX) have been in contract negotiations and cant seem to come to an agreement! Which means the hospital my doctor would use or normally uses would be considered out of network if we used them!!! WHAT?? Talk about stress a mamma out! So after contacting the doctor they did figure out a back up plan. We would use a different local children's hospital! Thank goodness we have a back up plan!

Yesterday 6-18-13 CMH Hospital called and said that they wanted to go ahead and preregister Adley for surgery. I asked if they came to an agreement yet and she said no not yet. UGH! But that sometimes if they do end up dropping each other that both sides will agree to go ahead with already planned surgeries and the In-Network cost. That would be fabulous! But I still would feel better if they would just come to an agreement already.

So there is a quick update for the last almost 5 months!!!


Now here is the BEST part of every blog update, Pictures!

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.