Boys and Girls

A typical day with Bauer and Ellie playing usually involves her being pushed, slung, or otherwise manhandled by Bauer. It's all in good fun. He tries to be gentle and she tries to be big, but it doesn't always happen. There are always a few shoves, bites, and stealing of toys, but in the end they always cry when they have to leave.

Readin' & Pickin'

Bauer loves animals. His animal books get more use than any others. While watchin' him read with daddy is one of my favorite things, what he eats for a snack is a little unsettling. I love how he looks at me right in the middle of it like, "If she sees me she's not gonna like it." I'm trying to train him to at least wipe it on his shirt. But Lord knows, right as he starts doing that I'll run into some famous big name person in public and have my son sitting there covered in boogies lookin' like the "mom of the year". Oh geeze. What ever to do!?!?

HAPPY, SAP, SURPRISED!

Bauer loves to make these faces. And no, "Sap" is not a type-o. That's exactly how he says it. It's my favorite one. He makes me laugh so much.

Where should I sit?

He could play in the living room, kitchen, dining room, bedroom, or even the bathroom. But today he chooses a laundry basket. Yep, no reason to even have the rest of the house. Think of the money we could have saved. Maybe we should all get baskets!! ha!!!

Mini Vacation!

Adam and I celebrated our 7 year anniversary this week!! Woo Woo!! We decided to splurge a little bit and actually LEAVE town. Gaylord Palms in Orlando has an anniversary special if you stay 2 nights. It was a unanimous YES!! Once we got there they even upgraded us to a suite for free. The second night my brother and grandma brought Bauer up and stayed the second in another room. We had a blast. The best part was the pool. It has a gradual decline at one end giving Bauer the option to actually swim by himself!!! Well, I don't know if it actually counts as swimming. It's more of a splash everywhere and jump all over mommy and daddy kind of action. Either way he loves it and we get to relax a little. What a great anniversary!

Best $2.00 ever spent

Found these little tent popups at a garage sale for $2. They have caused more joy and arguing within a 5 minute span than any other toy in our house. The kids love playing with them. But usually there comes a certain point of a "Mine! Meltdown Moment" The act of sharing becomes minimal and it is "every man for themselves"!! Just watch and see.

Our Little Italian Babies!!

So we get a talk the other day at school about giving our kids the appropriate portions of food in every meal. Something makes me think we would have failed today's evaluation.
What can I say? They LOVE spaghetti!!

Egg Extravaganza!

It's official...........we survived our first egg hunt!! We're happy to report after a very intense expedition all eggs were found. And yes, Adam and I slowly but surely threw all of Bauer's eggs away within a week. Our living room was becoming a mine field of egg remnants.
The kids had a blast. Can't wait for next year!!

Mr. Big Shoes

I just couldn't figure out what was funniest....
1. The pants not coming close to matching the shirt
2. The stomach peeking out from under the 2T pjs
3. Walking with mommy's shoes.........on the wrong feet or
4. The fact that I'm not certain whether the object to the right is a cracker or a puzzle piece. :)

Time with Buddies

This weekend we spent time with some of our dearest friends. Doug & Katie were down from Atlanta during our Spring Break and we jumped at the chance to meet up with them. We had a blast and Bauer & Ellie were finally able to spend some time together with their buddy Pierce. It was funny watching the difference between daycare and homecare toddlers. Bauer and Ellie's vocabulary was full of "mine, go, no, aaahhhhh" while Pierce was,"mommy, daddy, cup, etc. and the occassional stare at our daycare babies like, "oh my, what is happening? Why are these mommies chasing these kids around?" Pretty hilarious.

Time to catch up!!

Well since we haven't posted since January I'll do my best to update you on the past 2 months.

It's one of my mid-year resolutions to keep this thing a little more fresh!!

Bauer is doing great. He has gone from 110% boy to 115%. It's hilarious. Run run go go run run go go......... throw something.........run run run ..........yell a little bit.............go go go go go go .......................get a drink and do it all over again.

And he is TALKING TALKING TALKING!! It absolutely amazes me how quickly these little people pick up on things. His last speech evaluation went really well and we just praise the Lord. He is using tons of words and trying to put them together to, of course, tell me and daddy what to do. He's getting very good at it actually. It's funny to think how we as adults spiritually struggle with "It's all about me" sometimes. I'm convinced it's because we've been trying to fight it since birth. Here are some of Bauer's favorites:

1. "Mommy,......juice!
2. "Mommy......eat!
3. "Mommy..........I want it."
4. "Mommy.......go outside!!"
5. "Mommy.....GO, GO, GO!
6 "Mommy.....No"
7. "Mommy..... I don't want it"
8. "Mommy......more, more, more"
9. "Mommy.....I'm ready!" (usually to eat, for me to chase him, pull him in the wagon, or for daddy to play football tackle.)
10. "Mommy...... all done"
11. "Mommy......Bite" (usually wants to eat whatever I'm eating)
12. "Mommy....read...want read"

But even with all the commands and demands from our little guy there is nothing sweeter than hearing him say, "Hey Mama, Hey Daddy".

Here are some pics from the last couple months. By far my favorite are the two videos. The one with him eating may need a little bit of explanation:

When Adam and I fix our coffee we put whipped cream on top. Bauer loves it and in his mind coffee is the whipped cream. So now when we go to any coffee house Bauer says, "coppee, coppee, coppee, coppee". He gets a shot of whipped cream in a small coffee cup and eats it with a straw. I can't wait until he actually tastes the REAL stuff!! :)

Button Ups!

This post is for Sabra's Journey blog. You posted a comment about where to find button-ups but there isn't a "comment or a contact" area on your blog. This is the only way I knew to repond. We found them at JcPenney. I believe Target has them now too. I hope this helps. Sorry I couldn't get to you another way. You are totally welcome to e-mail us if you would like.
Let us know if we can help you with anything else!! :)

Your little man is adorable!! www.sabrasjourney.blogspot.com
Everybody should check Mr. Hudson out!!

Snow in Florida?

For all of our northern friends freezing their little toes off lately we feel now that we can finally empathize with you. :)

Our town holds an annual "Snow Fest" for the kids in the community. It mainly consists of bouncehouses, rockwalls, ropewalls, and yes 3 large piles of man-made snow!!! It's great.

Bauer wasn't quite sure what to do with all of the cold white stuff, but he seemed to enjoy it.

I will say it was nice to be able to go from snow to 75 degrees within a couple steps. :)

Lovin' some berries

Today we went out to Henscratch Farms. It's a cute little family owned farm that grows blueberries and strawberries throughout the year.
Bauer loved it. His favorite part was the chickens running around all over the place. We were reminded quickly that with a chicken coop comes chicken POOP!! I'm not sure how, but by the end we had to toss the shoes in the truck and sanitize his entire left leg. We had to laugh.

The strawberries were delicious!!

Gone Fishin

Over our Christmas break we actually took a few mini-vacations versus staying home and hibernating for a week. As teachers we get in free to Sea World so it didn't take long to figure out where we would go.
I'm pretty sure that someone somewhere was giving out free somethings in Orlando because I've never seen so many people on the road or at the park in my life!!

We were able to see almost everything except...............SHAMU!! I know, I know, that's the whole purpose in going, but at 1:45 they made an announcement over the park-wide intercom saying, "The 2:00 show is full, come back later" (paraphrased)
Oh well. Maybe next time.




Here is a picture of the crazy crowds. Can you find Bauer and Daddy?

ALABAMA!

We usually have Christmas in town and spend some time with my family and Adam's. Well this year we were invited to Alabama with the rest of Adam's family spanning from Virginia all the way down to Florida. They get together every 5 or 6 years and we were on the 6th year so our time had come!!

We had a massive decision to make that wouldn't involve what food to bring, what jackets to wear, or even what presents to buy. We had to decide HOW WERE WE GOING TO GET THERE!! Drive or Fly? Anyone with a toddler knows that a car ride can go from great to torture within minutes. We would be in the car a minimum of 10 hours both ways!!!! The thought of it made me want to cry. I was in complete fly mode, but as we kept checking prices it became clear that the only pilot we would have was Adam. So now do we go during the day or at night? (Should a trip really be this difficult? :))
Day time = many stops and a very awake baby that wants to get up and play
Night time = a very sleepy baby and a small overdose of caffeine for mommy and daddy.

NIGHT TIME! NIGHT TIME! NIGHT TIME!!

Praise the Lord Almighty!! Bauer slept 8 of the 10 hours we were on the road. And when he was awake it was almost like he sat there in shock thinking, "Why am I in the truck this early in the morning? .....Surely this is a dream." And then he fell back asleep.

The entire week was great! There was tons of family, food, and fun!!! The weather was wonderful minus the first day being 18 degrees!!! It warmed up pretty good after that.
The homes were gorgeous. We couldn't help but take a photo shoot with one of them that had a lake at the bottom of their property.
Big thanks to Mitch and Mika for letting 6 family members stay with you!! We had a great time and are so glad we decided to go. It's the first time in a long time that we were ALL able to get together. What a blessing. We love you guys!!

It's beginning to look a lot like Christmas!!

Finally Christmas time has come and one of our favorite things to do is watch the parades. Avon Park's was first on the list and it was up in the air as to how the babies would do. We prepared as any toddler mom would with snacks that would last an entire day and sippy's full to the brim. I had recently found a wagon a a garage sale and the kids loved it. So we brought it with us to the parade. For emergency purposes we brought one stroller in case someone tried to escape. I can't even put into words how well they did.
They were in a trance the entire wagon ride (which was about 4 miles - that's another story) and throughout most of the parade. We were a little late in arriving so we had to sprint along side the parade for a while until we met up with Laura. So many people thought the babies were actually in the parade!!! They kept waving to them and, of course, the babies waved right back. Maybe we should have made a sign for the side fo the wagon. We would have fit in a little better. Anyways, it was a great time.
The Sebring parade wasn't quite as crazy. Daddy got to come to this one and we sat with Bauer's friend Hunter. We parked and walked across the street to our spot. Ahh, so much easier. We also got to sit with my grandma and aunt for a little while too.
Much much fun the whole week!!!

Gettin' Out Of Town

We loaded up today and headed towards the Florida Aquarium in Tampa. It's free admission for teachers and children under 2. So we paid $0.00!!!! Definitley the best deal I've ever made!!
Bauer loved it. He has taken a liking to animals so it was cool for him to actually see some in real life. His favorite is the alligator. Every time he sees the Florida Gator emblem he says, "Alli". Pretty cute!
The aquarium is more suited for ages 5 and up, but it was still worth going especially since it was FREE!!

Farmer Brown

We decided to take advantage of a perfect picture opportunity today. A friend of ours decorates his yard every year for the fall season. We couldn't resist pulling out the overalls and checkered shirts!! I was very worried that Bauer's wouldn't fit. They were size 18 months and he is in nothing but 24 months and above. I'm pretty sure the Lord did some serious adjusting to the seams because normally we would have had to grease him up just to get him in them. Who knows how we would have gotten him out.........scissors??? Thank goodness they fit and worked perfectly.

I have a million pictures, but I'll just share a few.

Me and my pal Hunter

Ellie and Hunter talkin' some apple business.

Farmer Brown and family!!

Cuddling by the fire....

Okay, so there wasn't much cuddling going on, but there were plenty of laughs.

We had a mini-Thanksgiving meal with some great friends this week. The kids chased each other and fought over toys all night. It was great.
After we were finished eating we decided it was a perfect night to take everyone outside and get a little bon-fire action going. Unfortunately, toddlers don't come programmed with a mindset of "fire----hot". Instead, it's "ooooh, sparkly lights-----gimme, gimme, gimme!!"
Nonetheless, we had a good time. Once Uncle Mike got the jungle gym out for the kids they were happy as could be.

Just growin' and growin'

"What is your life? You are a mist that appears for a while and then vanishes." James 4:14

It is amazing how quickly time has gone by. Just a year ago we were introducing foods, starting to roll, and perfecting the language of babble. Now we're climbing into cabinets, running away from mommy, hiding toys in small crevices, eating more than daddy, perfecting the word "no", and playing as hard as possible.
I can't imagine the changes in the next year or so. (I know some of you are laughing right now saying, "oh, she has no idea." :)) I just hope we can make the most of every opportunity and cherish every moment. Even when we feel like we're hanging from a thread. :)

Here are just some cute pics of our little man growin' and movin'.

Yabba Dabba Doo!!

Halloween was awesome this year. We decided to have Bauer go as Bam Bam and his friend, Ellie, as Pebbles. OH MY GOSH!! They were adorable. Ellie was struttin' her stuff with her little Pebbles bag and Bauer was giving everyone a little smack with his caveman club. Thank God that thing was filled with cotton!!!

We went to a fall festival with the kids and picked up a few pieces of candy for mom and dad in a neighborhood nearby. :) They had a blast!!
Jen's mom made these costumes!! Thanks so much!

Headed Home

Saturday morning we were at the airport by 7:30 a.m. Flight leaves in 2 HOURS!!! Once again, it was time for baby track-and-field through the airport. Praise the Lord we got home safe with excellent news from the docs. Couldn't ask for better! :)
Here are some pics.




This is what we did for about an hour!!

Little bit of fun.

Our appt. was only about 45 minutes long (expected to be 2 1/2 hours) but it was going to cost $1000 for us get an early flight out. We can usually get ahold of someone that will make us an awesome deal to switch tickets, but not today. So we decided to take a tour of Fenway Park.

I'm so glad God didn't let us find a way home that night because we would have missed some much needed down-time and a really cool ballpark! :) It was nice to not have to rush rush rush!
That day I feel like God kept saying, "would you guys quit trying to go a million miles an hour and SLOW DOWN!" Oh how much of God's plan and creation we probably miss by trying to keep up with OUR schedule.

We had a blast at the park. We did get a few looks from people like, "who would bring a baby, a stroller, a backpack, etc. on a tour of a park?" We were the oddballs, but Bauer did great. And we got to give a little shout-out for the Devil Rays!! Of course, we were booed shortly after. But we got a little laugh out of it anyway!!

Check-up

We made it to Boston, found our luggage and headed to the doctor's office. I was really excited because we were going to meet a few of the amazing moms that have been such a huge help in our journey with Bauer. Their kids were having their check-ups the same day. We met with the dental team, speech, and Dr. Mulliken, Bauer's surgeon. All had good things say and shared suggestions to help with Bauer's progression.

The dental team said his top 2 teeth are slanted back a little bit, which we knew, and that some of the other teeth will need to be watched. They said the tooth alignment isn't great so there is a little abrasion between the top and bottom. But it didn't seem to be a massive issue at this time.
All the other teeth are coming in at a good rate too. Wonderful news.

Speech team decided since we were in a speech program down here there wasn't any need for services there. Great!

Finally we met with Dr. Mulliken. It is a pure joy to see him and his nurse Dotty. They are just wonderful people and God has gifted them so mightily. It's amazing to think that he had helped every child in that office that day with some of the most intense, complex surgeries. What a blessing to all of us.

He said Bauer's lip and palate looked great. No fistulas!! (holes in the palate) He said the palate looked long too. That's a good thing.
He did ask us to keep using the sunscreen and mederma on the scar as it was still a little red. He wants us to keep massaging as well. What a great report. You just hope and pray that whole first year that you are doing everything right and that you won't hear at his first big check-up, "Oh gosh, what have you been doing????"
So praise God we got really great news. Such a smooth and quick appt. And the best part is we don't have to go back for an entire YEAR!!!! Music to my ears.

In between doctors we were able to visit with the other moms. These ladies have been an unbelievable encouragement and help for us. It was such a treat to finally get to chat a little face to face. Jen and Josh Ford were with their little girl Sydney and Terri Cote had her little boy Jaron with her. Here are some pics.




What a great day!!
"'Give thanks to the Lord, for he is good; His love endures forever." Psalm 118:29

Boston Boy

This past weekend we had a check-up appt. in Boston. This one would be a little different than the others for a few reasons. Bauer wasn't having any surgeries. Praise the Lord. We were coming back the next day. And there wouldn't be a million bottles, jars of food, etc. in every possible crevice of every bag we had. Every mom would give a shout of "Amen" to that!!

But the new adventures would include a very mobile child on a plane. There was no second guessing bringing the carseat aboard. I think if we had to hold him through the whole flight the only option for a successful trip would have been duct tape or a retractable harness.
Also, Bauer does well going to sleep in the hotel, but now that he can move and roll all over the place we would have to figure out how to keep him IN the bed. For a trip there and back it wasn't worth dragging a pack and play around.

All this in mind we knew it would be a crazy, fun, interesting trip. We just prayed the Lord would let all go well and get us back safely. Needless to say, God is good!!

We finally arrive at the Orlando Airport around 8:00 a.m. Whew, we made it!!! .............wait a minute. What are we gonna do for an HOUR AND A HALF!!! No worries. Bauer had his own schedule including the following.
1. Climb all chairs and charm the ladies
2. Run from mom and dad because I know they want to chase me.
3. Ask for my sippy and a snack
4. Run some more.
5. Scream a little bit.
6. Climbing
7. Dad catches me........Scream.
8. More sippy please..........Sling sippy on the floor.
9. Running again.
10. Repeat previous list until about 9:20.

As crazy as it was we were happy to let him run because it meant that he would pass out on the plane. He did awesome during the flight. We are so thankful for how well he does.
Here are some pics:

Basket Head

I can't wait until Bauer is 18 and his girlfriend wants to see some pictures or video of Bauer. We are so pulling this one out. Usually he hates stuff on his head, but I guess this one fit his big ol' noggin' better than most hats!! :)What a funny boy.

Basket Head

Fun in the sun

This morning we had a yummy yummy breakfast with Jen, Tim, and Ellie Bell and afterwards headed to a nearby playground. The playground lasted an embarassingly 15 minutes due to the heat and the fact that our 13 month old children aren't exactly ready to go down the 8 ft. tall slides just yet. The swings were fun, but they only do that for so long. We actually started laughing after a few minutes b/c everyone with children knows that for the amount of time it takes to pack the kids up wherever we're going better be worth it!! Well, when we all started pouring sweat 10 minutes into our adventure we all gave up! "That's it! Pack 'em up! We're out of here!"
So when we got home we had a better idea to let them play in the pools. Praise Jesus for water!! :) I think we'll wait until around December to try the playground again. ;)

My Cutie Pies

Adam was tickling Bauer today and he was laughing so hard. It was hilarious.

We're still here!!

Some of you may have been thinking, "Stacy must be waiting until Bauer's in kindergarten to post any new pictures." Ha!
I'm really sorry I've been a blog slacker. I shall be updating as quickly as I can!:)

Coffee House!

Usually on Fridays we load up the babies and go to Starbucks for some much needed caffeine and down time. This has to be done very carefully. Now that the kids are no longer ground dwellers and walking has become the transportation of choice we can't just sit and watch anymore. We use to able to get away with putting them down and having at least 3-5 minutes before we had to go catch them. Now we have to barricade the entire area. 20 seconds of not watching and someone is getting ready to throw a $15 cup on the floor, putting someone's 3-day-old cookie in their mouth, or just running off into the next store. They try desperately to escape, but to no avail. We had a great time today!

Mini Vacation!

Thanks to wonderful friends and family Adam and I were able to get out for an entire day and go to the Gators vs. Hawaii game on Adam's Birthday!!. We were on the 50 yard line!! So much fun!!!

It's always weird not having a baby to change, feed, or comfort for more than and hour. Being the longest and furthest away we had ever been from him I was definitley getting Bauer-sick by the end. All day I just kept thinking about how awesome it would be if he played football and what a complete, ridiculous mess I would be in the stands.

Our wonderful family watched Bauer for us. For the most part he was very good, but by the end of the day I think he was giving them a run for their money!!! We owe them one!! Thanks bunches!!!

We've created a monster!!

Bauer's Aunt Jojo and Uncle Mike bought him a Little Tykes playyard. He is an animal on this thing!! He will go up and down the slide 4,000 times before he even thinks about tiring out! The only bad thing is that there isn't a back to it so one of us has to be in front of it and one behind. We have to stick it in the garage when not playing on it. It's either that or put in an electric fence. :)

He's so stinkin' cute!!!

Ellie is 1!

Bauer's best friend Ellie had her first birthday part this weekend. It was adorable. I don't think the boys quite new what to do with flowers and pink everywhere, but you better believe they had a great time. Between the pool and taking all of the pink flowers out of the ground they were lovin' it. Now they are officially all TODDLERS!!!

It is amazing how quickly Bauer has grown. We were looking at old pictures of him at about 2 months of age and it almost brought tears to our eyes. Everyone kept warning us that time flies faster and faster as they get older. That first month when we were delirious with lack of sleep we couldn't imagine why it would be bad for the time to "fly". But now it's crazy with him going to "big boy" school and watching him change every day. He's is talking constantly, running all over the place, and usually eating more than Adam and I.

It's amazing. We're so blessed to have such a handsome, wonderful little boy.

Busy Boy!

Well, Adam and I are back at work now so Bauer is experiencing his first run of daycare. He loves it. By the time I pick him up he is usually the sweatiest one of the bunch. He has a blast. I can't say that he's crazy about me leaving him in the morning, but after about 2 minutes he's fine. I almost peed in my pants when he brought home his first coloring project. I think I counted 5 crayon marks. I guess those were the only ones lucky enough to actually hit the paper!! It was hilarious. I plan on framing it!!

Mr. Gardner

Bauer discovered the waterhose the other day. Day kind of went like this.......... Pick up hose, hold it in air, water runs into his face, he cries, realizes he not drowning, and then do it all again. I couldn't help but laugh. :)

Pow! Kerplam!! Splat! Bam!!

I hope all true original Batman fans recognize the reference being made in the title of this post!

I know lots of you are going to see the new Batman movie, but you haven't seen anything until you've seen this...........................................................................................

Birthday Bash!!

What a great day!! We decided to throw Bauer a monkey-themed birthday party. For some reason when he was about 6 months old he fell in love with monkeys. We're just hoping he isn't pleading for a real live chimp by the time he's 5!!
All of the kids had a blast. We couldn't believe how well everyone did. Usually with 8-9 babies all under the age of 18 months there tends to be that inevitable "melt down" period. Not today. They were awesome. I think they were so busy with the pools, toys, and food that they forgot nap time was way overdue.


After an hour or so of playing outside the moment of truth had come. It was now time for .....................THE CAKE!! Up until now Bauer really hadn't had a large portion of pure sugar in any of his food. Well, that was all about to change. Adam spent the morning before preparing Bauer's first cake. I must say I was very very very impressed.

When we set it in front of Bauer he just kind of stared at it like, "hmmm, I wonder if I'm going to get in trouble if I touch this thing?" But once I took some and put it in his mouth, it was ALL OVER!! The monkey had met it's match! Soon he was just as happy with feeding it to everyone else too!

We are so thankful for everyone who came out today. We had a fantastic time and we hope you did too. Thanks for everything! We are incredibly blessed to have such wonderful family and friends.

HAPPY BIRTHDAY!!!

Wow! An entire year has already gone by!! Crazy crazy crazy!! It's amazing to think what God has brought us all through in just this first year. We were flipping through pictures the other day and the change that's taken place as Bauer has grown is incredible. He was such a skinny little squirrel for the first month and then it looks like we started giving him creatine with every meal. :) ha! We are so thankful for how well he has grown and how easily he's adapted to all his different feeding methods. A lot of cleft babies don't transition so smoothly. He's always been in the 90th percentile or higher in every measurement which, again, isn't typical of cleft kids.

Just in the last month his personality is starting to shine brighter than ever! He has the gentle sweet side with hugs and kisses and then his 110% boy side comes out and the next thing you know you're being smacked in the head with a book or bottle. If we have another boy it's gonna be a constant battle of "Rock'em Sock'em Robots".

We've learned a lot about him this past year, but probably more about ourselves and who God is helping us become. We've learned to lean on God in so many different areas. When we thought we were patient enough, strong enough, or even smart enough on our own we quickly realized that leaning on Him was the only way we were going to make it. I'm a "fixer" by nature and sometimes I remember getting so frustrated because I couldn't fix the problem at the time. And God started heavily laying on my heart that I can't always fix it on my own, sometimes nothing is even broken-it's just inconvenient, and I'm not a failure for being unable to fix it - that's what He's there for. We realized after a while that babies are babies and they do what they do without a clear explanation on how to make things better. It's pretty much a combination of patience and trial by error.

Here's a picture of him the day he was born and exactly 1 year later. Doesn't even look like the same baby!!

Do you see what I see?

We've had a lot happenin' over here at the Smehyl house. Talking, Eating, Sucking, and now...........................................WALKING!! Oh yeah, that's right....watch out world .......... Here he comes!! It took a while but he finally has figured out that he doesn't need to cling to the couch, walls, mommy, daddy, or anything to keep himself standing. He's also noticed how much more convenient this whole walking thing is. He escapes faster, can run away within seconds, and we especially love him getting into the bathroom and eating toilet paper.

All cabinets are bolted shut, hallway doors are closed, and we are on constant watch for anything laying around that he can put into his mouth. Yesterday, that something was a crayon which was nearly followed by a recipe he tore from a book. Today it was a new mustard bottle and relish I bought at Publix!!

He definitely loves his new set of wheels and is making us so proud every day. It's really cute watching him waddle from room to room like a little penguin. I just praise the Lord we don't have to keep lifting 26 lbs too much longer!! :)

Do You Hear What I Hear???

Oh I never thought we would be so excited about saying this, but Bauer can finally suck!!! It's by far one of the sweetest sounds he's made since birth. :) We've been slowly backing off on how much we cut his sippy cup nipples. One day he finally made some suction sound and has made improvement with every meal, but about a week ago we gave him a completely normal sippy with a brand new nipple and he totally figured it out!!! God is so good. His palate is not only repaired, but it's finally functioning properly too. Music to our ears!!! To think that he was born with a massive whole in the top of his mouth and within a year he is totally sucking from a regular nipple. So awesome. It's funny how the little things in life get you the most excited!! Praise the Lord!

Aaahhhh! A week away from home!

Oh my goodness it was so nice to get away for a few days. Adam had a conference down in Marco Island and family members were able to come too. So you better believe we packed up everything and headed down for a nice little vacation. Of course, anyone would have thought we were going to Europe for 6 weeks with what we packed, but that just goes with the territory of traveling with a baby.
We had a great time. Sleeping is comical on these trips. Once the baby is asleep everyone in the room is on stealth mode. Everybody knows if the baby wakes up someone is going to get hurt. :) So we all just lay quietly in the dark like prisoners hoping to fall asleep at a decent hour. So funny. Bauer slept good most nights, but a couple times the rooster crowed WAY too soon. He would wake up and you just see this little head pop up out of the crib and then he spots us. At that point it's over!! There is no hiding. HE KNOWS WE'RE THERE!! It was cute. Much cuter around noon the next day than at 2 a.m., but nonetheless it made us laugh.
Sunsets were great, water was perfect, and the pool was huge. Bauer had a blast. He is now obsessed with pointing to every bird that flies by. He points and says "bi bi".
We were also able to go the Naples Zoo. It rained shortly after we arrived, but Bauer got to see some actual live monkeys!!! His favorite animal.

Ellie's Big Day!

Adam and I were blessed to be a part of Miss Ellie's Christening on June 22nd. As you can see she was so sweet in her little white dress. Just think mom and dad, in just a few years that will be a wedding dress!! ha! By the way, I think I caught Bauer winkin' a few times. Little flirt!

WATER DAY!!

The babies had a blast today playing in the water. Of course, Ellie crawled all over the place and Bauer stayed in no more than 2 spots the entire time. It's almost like watching a grizzly bear and a butterfly play together. Hilarious. I expect at any moment we'll look over and Bauer will be bench pressing Ellie.
By the way, I bet you can't guess who owns all the fun toys today? Here's a hint.......IT'S ALL PINK! :)

Smehyls = 4

Bauer wanted to announce he will be a big proud brother very soon!!! Yep, THERE'S A BUN IN THE OVEN!! We found out about a week ago that the Lord has blessed us with another little life. We're both very excited and anxious. The doc says we're about 5 weeks along so it's still really early. Just praying the Lord will keep the baby healthy and that everything over the next 8 weeks fuses together perfectly. The lip and palate finish fusing around 12 weeks. We know the Lord will provide for whatever happens, but still praying for wholeness.

Is there something on my face?

Bauer is trying all kinds of new foods. He will pretty much eat anything you put in front of him. Actually, he'll put anything he can pick up in his mouth -- grass, dog hair, sticks, mulch, carpet fluffs, newspaper, receipts, magazines, etc. etc. We constantly have to keep an eye on what he has in his hands. Usually, if it's something he knows he shouldn't have he'll try and turn his back to us as to hide the evidence!! It's pretty funny!
Today he was eating some blueberries and we couldn't resist snappin' this shot!!

A new playpen!

Well, we thought about buying Bauer a playpen soon, but it seems he found something he likes better!! I wanted to toss him into a bowl of sanitizer when I saw this, but it was too funny not to take a quick pic!!

Clean Ears!!

We took Bauer to his Ear, Nose, Throat specialist, Dr. Cotter, last week in Orlando to check on a recent infection and to have his hearing checked. There was concern that his ears were still red after a week on antibiotics. After examining they also noticed his eardrums had perforated on both sides which explained the load of drainage over the last 3 days They decided Bauer needed tubes put in ......................................THE NEXT MORNING!!

The day before the doctor had an emergency surgery twenty minutes before we arrived so we didn't get to have Bauer examined. One drive to Orlando. They felt bad for making us drive so far and cancelling so the next day they were able to get us in. Now 2 trips to Orlando. So when she said "he needs to go ahead and have tubes put in TOMORROW" I've never wished so badly that I had my pilot's license!! ;) She said the palate probably isn't functioning 100% yet so that's probably added to the build-up and infection. It needed to be removed quickly.

We're just so thankful that we found a great doctor who's worked with cleft children. It's what was best for Bauer. We would have driven to Miami if needed, but 3 trips back and forth to Orlando in 3 days was a little crazy. Praise the Lord Adam and I were both able to make it and Bauer got the help he needed.

The surgery lasted about 20 minutes. Bauer came around the corner on his bed drinking a sippy cup. He was good to go! We couldn't believe how fast it was. The doctor said there was a massive amount of stuff in his ears. The best news of the whole day was that the perforations had already healed over. Praise praise praise. We're so cautious with Bauer's hearing. We don't want to do anything to cause any permanent damage.

I wondered a few times over those 3 days if we did the right thing in March by not putting the tubes in, but we both felt at peace with the decision and we can't change it now. The Lord knew what was coming and he allowed us to get the help we needed when we needed it.

"Who of you by worrying can add a single hour to his life?" Matthew 6:27

Hide n' Seek!

One of Bauer's favorite toys is now my cell phone. He was playing with it the other day and I couldn't find it anywhere. One second he's got it in his hands the next I'm looking everywhere but in the toilet. I used Adam's phone to call it and we were looking under, around, and in everything. We finally spotted it and busted out laughing.
See if you can find it.

Daddy's little football man!

Bauer was so stinkin' cute in this jersey. We are NOT Dallas fans, but I couldn't resist putting it on him. Such a handsome little man.

My buddy's birthday!

Saturday, June 7 was Hunter's birthday party. Bauer had a rough start and needed a nap, but he came back towards the end and had a great time. Uncle Mic and Aunt La threw a great party and we loved the western theme!! It's so crazy to think our "babies" are already a year old.

My Bestest Pink Friend

Bauer's friend Ellie came over and played today. It's so funny watching them. Ellie is as fast as lightening when she crawls and Bauer just waits until she gets close enough and snatches her in. Since Bauer is more like a cement block Ellie likes to use him to crawl up on. When Bauer tries doing that it's like a bear climbing a flower.
Bauer loves playing with Ellie Bell! He also refers to her as the pink friend. She is always dressed in something sweet and pink!! So cute.

Blue Man Group

For Mother's Day Bauer bought Adam and I tickets to Blue Man Group in Orlando. Such a sweet boy!! ha! :) It was awesome. If you haven't been you need to make time and go. We ate at Margaritaville beforehand and we both gave it a 10!!! Halfway through the night we realized that it was the furthest away and the longest time spent away from Bauer. We pretty much talked about him the whole time, but really enjoyed getting a night away. It was fun going on a REAL date again!!

CHOKOLOSKEE BOUND!!

Adam and I have been dying to get back down to Chokoloskee and go fishing. We finally decided to go ahead and go with Bauer and just see what happens!! It's not exactly a beach resort and there isn't much for little people like Bauer to do. But my grandma said she would watch Bauer and we could go fishing with our friend, Redmond, for the day. Oh man, are we glad we went. It was so nice to get away from the house and get out of town for a while. Very refreshing!! Plus , we caught a good amount of fish and saw tons of wildlife, porpoise, sea turtle, shark, & stingray. We had a great time.

Praise the Lord Our Shepherd, Provider, and Healer!!

We have finally reached the long awaited day!! On
May 7th we were exactly 6 weeks post-op. YEAH!
YEAH!! YEAH!! Now Bauer is officially recovered! It's estimated that after surgery each week that passes allows for 15%-20% further healing.

It's neat to think that Bauer's palate is pretty much like ours now. He went from a gaping whole in his mouth to a completely closed off palate like anyone else's. It won't function fully for another couple months, but everything is in tact as if it were never cleft. There is a tiny pin-sized whole on his uvula, but they pretty sure it will close on its own.

He will have to go through some muscle/speech therapy to really get everything moving properly, but he's doing great even now.

We're going to start working more on his ability to suck from the sippy cups too. Right now he's still munching on the cut nipple with the Nuby Sippy. He bites down and liquid comes out much faster. Every now and then you'll hear a little suck, but it's not consistent simply because he's never been able to do it. Hopefully, he catches on quickly and we can be on a regular sippy cup by mid-summer.

All in all the 6 weeks post-op with the palate wasn't too bad. We were on constant eggshells with any objects put in his mouth and staying away from certain foods, but it definitley wasn't as strenuous when dealing with the cleaning aspect like with the lip.

It's been incredible how God has guided us through every step, provided all we needed through family, friends, finances, and more, and definitley brought a healing to our son through the miracle of medicine. We still don't know why all of this happened. We may never know, but we have had to trust Him in a way we never have before. I pray when dealing with future surgeries and times of need with Bauer we will remember how powerful God worked and is working in our lives and that He will continue to do so day by day.

AQUA BAUER!!!

Bauer has enjoyed his bath since day 1 so we were so excited at the chance to get him into a full-size pool. This past weekend my uncle came in from Oregon and my family all stayed at Longboat Key for the weekend. It really is hilarious the amount of stuff we pack for just a day at the beach!! Here's a brief list:
* stroller/backpack carrier
* exersaucer - just in case he hates the pool
* fun floating boat
* random amount of toys
* sunscreen (50+ - Ultra-block-out-everything-but-the-bacon baby sunblock) - If he has my skin he could come back looking like a little tomato!!
* Sand toys - just in case he has a sudden urge to build a sandcastle !?!
* Enough clothes to last 3 days
* Little Swimmer diapers - no surprises in the pool please!!
* Baby Food, Baby snacks, Bibs, Formula, Juice, Sippy Cups
* BABY

Anyone with a baby knows any car ride past an hour can be really smooth or really loud. But Bauer did great and didn't start getting fidgety until we were about 10 minutes from the hotel.

He had an absolute blast in the pool and loved watching the ocean waves. It was too cold to get in and play. He and daddy are quite the water acrobatics team!!

SEE YA LATER BRACES AND HELLO NEW FOOD!!

We're getting closer and closer to that magic "6 weeks" window. I called Bauer's nurse today and she said he could start munching on pieces of toast this week. We have to wet it a little bit with water and smash it down so it's not so coarse. Bauer loved it!! Even though we have the "okay" to do it we still find ourselves being extremely cautious. I just have this fear of his palate being ripped open even though I know deep down that it would take more than a piece of wet toast to do so.

We we're also given permission to take his arm braces OFF FOR GOOD!!! Praise Jesus!! Here lately Bauer had figured out how to dismantle the braces on his own. I would always laugh when we would be in the car and all of a sudden I hear the ripping crunch of velcro straps. A couple seconds later I would see an arm brace being swung around in the air in the rear view mirror. I couldn't exactly put the car on auto-pilot and fix them so I just prayed he didn't find anything other than his fingers to chew on.

The only way we could get them to stay on overnight was putting them under his long-sleeved pajamas. You've got to look for a certain sleeve too. Some sleeves are almost too tight for their arms much less any type of brace. Sometimes it's sad watching him have to sleep with those things, but it has to be done and he really doesn't seem to mind it. It's amazing how the babies adapt so quickly.

Jail Time!

Today I looked over while Bauer was playing with his toys and saw this:

I think he was slightly irritated that instead of helping him bust out I took time to find the camera!!

Takin' his motorcycle and cell phone out for a drive!!

Actually, he looks like he's saying, "What, what.....I didn't do it!!"

WE JUST LOVE THIS BOY!!!

Those two bottom teeth will make anyone fall in love!!:)

Piggy! Piggy!

We are so excited that Bauer can start eating new things. Today we gave him a little bit of banana in one of those mesh baby feeders . You stick any type of soft food inside and the baby just bites and sucks on it. We started with a little bit of banana and by the looks of his shirt you can tell "a little bit" turned into the ENTIRE BANANA!! He loves that thing. Anytime I would take it away to refill it he would just start screaming and shaking like he was going into withdrawals. I kind of do the same thing with Krispy Kreme donuts so I can't blame him. :)

The feeder also allows mom and dad to have 10 minutes or so to eat dinner. Gosh, who ever thought I would be happy with 10 minutes to eat? Actually, I don't know that it would qualify as eating. It's more like shoving as much food in your mouth as fast as possible with hopes that it will last until the next meal! You gotta laugh!

Little Hams at the Hammock!!

Today Bauer went to the Hammock with his buddy Hunter. I have a feeling Adam and I have a little daredevil on our hands. He loves being outside. I'm thinking about just creating a permanent rock wall in the living room. With all the other random baby stuff in there it's not like you would notice it!! :) It's turned into a huge toy box!!

The boys had a blast. They make us laugh so much every time we do something. Though we came close to death climbing up the slide holding babies Aunt La and I had fun too!!

NEW SOUNDS!!

You will be amazed at the new sounds your little one will start making within no time. Consonants and vowels come to life and even the pitch and timbre of their voice changes. As the days passed we could tell Bauer was realizing he could manipulate his mouth more and more. He is constantly playing with his tongue against the roof of his mouth. His laugh and scream have always been loud, but now it's getting louder and higher!!!
We are excited to get started with the speech therapy. I can't imagine how much more he'll be able to do after that. The surgeon has told us several times that if the babies are in a speech environment early on that their abilities should be close to 99% normal by school time. We may try and look for a therapist that specializes in cleft children, but for now we are going to use our local resource, EARLY STEPS. Check your area for early intervention teams. It makes a huge difference for your child. I've been around kids who didn't get the therapy they needed and even at 5 years old you could barely understand what they were saying.

Today he was watching me chase Gator and for some reason thought it was hilarious!!

Mmmmm! Good!!

Now that Bauer can eat solids without shooting them through his nose :) we're trying all kinds of new stuff. I think I've mentioned before that there is an eating schedule the hospital will give you before checking out. It shows what and when your child can eat. Anything thin and pourable is allowed within the first 10 days. We didn't really try much other than milk, pedialyte, and apple juice the first week or so . Didn't want to chance any food getting clogged on sutures and stuff. But at this point we were about 3 weeks post-op so he was eating and loving most things..............................................MOST THINGS!! HA! :) :)

IN THE SUN HAVIN' SOME FUN!!

We've spent the last couple of days on outside adventures!! Highlands Hammock State Park is near our house and we decided to make a day of it. I found this bike attachment at a garage sale before Bauer was born. He really liked it until about half-way through the ride. The peaceful, calming ride outdoors turned into a screaming baby and mommy peddling like Lance Armstrong trying to get back to the truck. I'm just glad his cry for help didn't attract any momma bears!! :)

I don't think the seat is made for little ones under a year. I think he was just getting super uncomfortable.

After we finished our record-setting speed ride we had some rest time on the benches. It was such a beautiful day!!

Boys Boys Boys

Bauer was so glad his friend, Hunter, stopped by to say hi today. He is one of Bauer's best buds. They just start laughing when they see each other. It's like they're thinking, "Oh man, I don't know what your name is, but I know I've seen you before!"

Hunter is much more mobile than the Bauer man. He will bounce and crawl all over the place. Bauer just sits and waits like a venus fly trap until Hunter gets close enough to grab and he pulls him in. People always say, "work smarter, not harder!" ha! ha! That's what I like to think he's doing anyway. HA!!

Beware the Power of Bauer!!

We call Bauer's arm restraints his POWER BRACES. When you purchase these go ahead and get at least 2 pair. Now that he is eating solids they get dirty a lot faster. After the first surgery he wasn't eating all the fun colorful, stinky stuff so we didnt' need to worry to much about it.

But now he ends up smashing all kinds of yummy fruits and veggies into the cloth.

Also, some babies may be moving and crawling by now. It's amazing what these things pick up off the floor.

1ST HAIRCUT

Bauer's lovely locks are starting to not look so lovely. Adam has trimmed it a few times, but it's always a jack-in-the-box surprise as to what it will look like the next day. Could be spiky. Could look like he was electrocuted. Who knows. So we decided to let the professionals do their job.

We took Bauer to Adam's barber. And though he does a great job, it's a little different when a squirming 8 month old is in your chair. I think the man was just praying, "God, please, don't let me send this kid home with one eye!!" I was praying, "God, please don't let Bauer look like a blind man cut his hair."

Thank goodness both our prayers were answered :). Well, for the most part. The front of Bauer's hair was cut at about a 30 degree angle. But you can't really blame the barber. Bauer wouldn't hold still long enough to let him even it out. Oh well. It's still pretty cute.

So Proud!!

On the way home from the airport Adam and I just took a huge sigh of relief. We almost couldn't believe it was finally done. I remember in August crying and thinking how far away surgery was and feeling like it was never going to be over. The last 8 months of our lives have definitely been incredibly crazy, but we've finally arrived at the "end of the tunnel". At least for a good while. We look back and can't believe how the Lord abundantly provided with finances, relationships, doctors, hospitals, transportation, hotels, support from family and friends, and such a beautiful, strong little boy.

We are so proud of Bauer. He has taken everything that has been thrown at him and done so well. I've said many times how amazing it is the strength the Lord gives little ones. I know he will never remember everything that has gone on, but we will. We'll never forget how humbled we've been by his courage and determination and the flood of grace and comfort God has placed over our family.

The Lord has blessed our lives so much in one of the most difficult times we'll ever go through. I remember when Bauer was born feeling like all the joy had been sucked out of us. "How were we going to get through it? What was God doing? Why?

Amazingly, we've grown closer as a family and have come to see Christ and His promises take hold of our hearts and lives. If I've taken anything from this time it's learning to honestly and completely trust what God says. He DOES have a plan for our lives. He IS in control. He ISN'T going to leave us. If He can guide us step by step through this, He can handle my day to day stuff just as well.

He doesn't only want to be there for me in times of need, but with every breath I take. He created us and will always take care of us. He calls us his children for a reason. As a FATHER and SAVIOR He's there in the good, the bad, the ugly, the fun, the miserable, and any other day and night that comes 'round. The Lord said, "I'm the same yesterday, today, and forever." Hebrews 13:8

We are no more special than anyone else. Our situation isn't any more important than what you may be going through. We just want you to be encouraged and know that whatever the Lord allows in your life He will also supply all you need to get through it. It's not always the smoothest or easiest road. Definitley not one I would choose or even agree with sometimes, but know that He will walk beside you the whole way even when you feel alone.

Praise the Lord for His perfect unconditional love. We wouldn't have gotten through this without Him.

So Proud!

We had our post-op appt. today. Dr. Mulliken said everything look good. He saw a small amount of food that was stuck to the palate and reminded us to flush the mouth with water after every meal for the first 4 weeks. Sounds easy, but Bauer hates it!! We'll do the best we can.

We were so excited to find out we won't have to come back until NOVEMBER!!! YEAH!!

I asked about the other possible surgeries and orthodontics procedures. Dr. Mulliken kind of smiled and said, "You don't need to worry about any of that right now. That's years down the road." Part of me was comforted by that. The other part was stunned that I wouldn't have to plan plan plan for a while. We've just been in such issue-fix-recovery mode that it's hard to relax for too long. But we really are excited to know that we don't have to plan for anything big for at least 3 or 4 years. BIG RELEIF!!

These are some pics of our last night, post-op check-up, and GOING HOME!!

BEFORE AND AFTER

Bauer was having a small scream fest today so we decided to make the most of it and get a good picture of his palate. It is amazing the difference. I still can't understand how in the world this is done. This surgeon (Dr. Mulliken) has been given a miraculous gift from God. It's neat the individual gifts and abilities the Lord gives us.

Trying to get home early!

Okay so we found out our post-op check up appt. was moved up a day and we didn't want to stay in the hotel any more nights than necessary. So I called the airlines and some woman said it would be about $400 for all of us to get an earlier flight. Well that made our decision real easy. Another night it would be.... Then my grandma suggested to call again and see if someone else will give us any other options. I called back and told this girl Linda about our situation and that we would love to try and get Bauer home sooner than later. With really no questions she said, we'll let me see if I can work some magic. Next thing I know she says, "Okay, flights are changed for all 4 and I hope your son does well. Have a wonderful day." I couldn't believe it. NO COST FOR ANYTHING!!!! God just continues to supply all we need and more. Awesome!

Out on the Town!!

We had a good time today. The weather was great and we found a huge mall to stroll around for a couple of hours. They have a massive Children's Museum up here in Boston too, but I think we'll take Bauer when he's a little older during an annual visit or something.
He did so good. Took the sippy all day long, napped in the stroller, and had a great time people-watching. We're very excited we get to go home soon.

Will they ever eat?

After last night Bauer is now eating on a more regular schedule. Don't be discouraged if your child is reluctant to take in their normal about of food. It would probably amaze us to know how tender their little mouths are. I remember with the lip surgery it took about the same amount of time for him to start eating. Like I said before, you don't want them to dehydrate, but they will eat when they can. YOU WILL FIND A WAY TO FEED THEM!! Some babies only want the spoon. Some the spoon and sippy. Some the syringe and spoon. Who knows. I even had a friend of mine say they used a paper cup pinched together pouring it into his mouth. Some parents like the Ross Nipple too.

I will say that we were very glad we had Bauer completely on the sippy cup before going into surgery. So he was familiar with it and that was his new official way of eating. If you have time I would highly recommend getting them off the bottle before going. It will be one of the most frustrating things you ever do. I lost count on how many times a day I had to pray for patience, but it's totally worth it.

Some families don't have time between the lip surgery and palate. Another friend of mine had her daughter's lip done in late January and the palate in March. So she only had about 2 weeks to work with after the lip healed. That's just not possible. But I think she finally took to the Ross Nipple and did pretty good. Bauer was never crazy about the Ross. It lets liquid out way too fast for him. But some babies love it.



We had to remember advice some people gave us: JUST TAKE IT DAY BY DAY.

Sweet Lord Help!!!

Last night was one of the worst nights Bauer has had in a long while. He decided to get up at 11:00, and stay up crying until about 2:00 a.m.!!!! It turns out his appetite had kicked in and ate at 11:00, 12:00 and 2:00. I'm shocked his stomach didn't explode, but by 2:00 a.m. I would have given him a Twinkie if it meant he would sleep. I'm sure you've all been there too. After that he slept until about 6:30 and then was up for the morning time.


He slept on the floor by our bed so we were always careful to not make ANY noise. When we would finally get him settled down for 5 minutes I didn't breathe enough to make the sheets move. And every time he would start to make a little noise I would freeze and slam my hand down on Adam so he wouldn't move either. My poor husband. He really must love me. :) But I had to. Once Bauer saw the we were in the room he wouldn't give up until we picked him up and cuddled. At one point I thought, "That's it! I'm sleeping in the blow-up bed with him." So I laid there with my legs hanging off and my arms all crushed up underneath me. Someone would definitely be getting me up with a crow bar the next day.
But I ended up having to get back in bed because Bauer thought it was play time!!!
He was having a blast. Smiling, laughing, rolling all over the place, grabbing my eyes, lips, hair, blankets, etc. He clearly had forgotten that complete darkness meant "time to sleep"!!!! Thank God that the Lord never sleeps! Because neither were we and He would hear our prayers. :)


Sometimes I would get him to sleep and as soon as I put him down he would wake up crying. I decided I would just hold him all night if I had to. If only I were an elephant and could just sleep standing up while holding him!! :) He was still kind of frazzeled from the surgery and probably in a little bit of pain even with the medication and just wanted Adam or I to be there.

So we switched spots with my grandma in the living room and she took the bed. I slept in the chair as long as I could with him on my chest. As uncomfortable as it was I loved every minute of him wanting to lay there. He's never been a big cuddle bug so it was a really sweet time in some insane way. But after I lost feeling in my legs from having them propped up so long I slowly put him down on the fold-out and tried to get a little shut-eye. I think I was able to at least shut one eye and then everybody was up again! The Bible says "With the Lord a day is like a thousand years, and a thousand years are like a day." 2 Peter 3:8. I was definitely feeling the "day is like a thousand years" part. Ha! Ha!
Once Bauer was up for the day my grandma watched him for a few hours so Adam and I could go back to bed. Wow. I'm exhausted just recapping the whole ordeal. But again. When looking back. You have to laugh.

VERSE FOR THE DAY:

"He gives strength to the weary." Isaiah 40:29

SLOBBER!

BUY PLENTY OF BIBS AND

BURB CLOTHS!!!!

After the surgery the babies have lots and lots of drainage. At times it would almost be easier to just have a bucket hung around his neck! :)

Nope, that's not a string hanging out of his mouth!!!

Even with slobber he's soooooo handsome!!!

Sleepy Sleepy!

We bought Bauer a little blow-up bed for this trip. It's made to where the baby can't roll out. We tried it out once at home and Bauer was not impressed. But unless we wanted Adam rolling over him at night and nobody getting any sleep this was our only option. We put him down about 9:30 p.m. and , praise the Lord, he didn't wake up until 6:00 a.m. !!!! It may not be sealy posturpedic, but it will work!! I'm sure the codeine had a little something to do with that too. :) Whatever the reason........................WE GOT SOME SLEEP!! Here is the website for the bed: OneStepAhead.

The home-care sheet we received at the hospital said we could let him have stage 1 foods by today. So we pulled out some bananas and added some formula to make it really thin. He ate the entire box!!! YEAH!!! I think the 'ol appetite is slowly kicking back into gear. We have to be really careful putting the spoon into his mouth especially since we don't have a high-chair. I can just see Bauer moving his body real fast and me sticking the spoon right up into his palate. If that happened I'd just go ahead and check us both back into the hospital. :) One bed for Bauer, one bed for mommy.

Make sure you rinse out the mouth after eating. You are suppose to squirt water into the baby's mouth with a special curved syringe after every meal for the first 4 weeks. It keeps the food from getting stuck together on his stitches or any holes that might be there. Last thing you want is infection. I've almost decided to put that word on the same level as curse words. ha!

The syringe is kind of tricky. It's very pointy so we cut off a little bit of the end. He absolutely hates it when we do this, but it has to be done. Just be SUPER CAREFUL!!! In fact, if he's real squirmy we will just give him some water from his sippy or a spoon.

He's also playing on the floor more and more, but we've noticed he still gets tired pretty easy. I have to keep reminding myself that his little body is still in the early stages of recovery. Even as great as he is doing he still needs time to work up to his normal energy level.

We've Busted Out!!

The hotel room felt like a Sandals Resort and Spa compared to the hospital. Adam and I could finally lay down and not be in the fetal womb position!!
My grandma got up here today so between both grandmas being here Adam and I got a little bit of shut-eye this afternoon. So nice. We're so thankful they are both here. It's been a huge help.

He's still not feeding quite as much as we would like. It seems like he just wants to sleep all day. I would too if I just went through what he did. We do have to keep an eye on him getting enough fluids throughout the day because the babies can easily dehydrate after surgery. We're doing what we can.
Tonight he had some daddy cuddle time and got his first bath in 3 days. You can tell it kind of revived him. Nothing like a fresh bath!!

Packing out.

YEAH!! Today is a big day. We get to have the packing taken out and soon after we will be discharged. It seems a little early for that, but he's really doing well and we're ready to get out of here. This morning the nurses came in around 7:30 a.m. It took about 20 seconds. Bauer voiced his opinion about the whole thing very quick, but we rocked him back to sleep within about 10 minutes. He did great and was looking even better by the time we left.
We're hoping now the feeding will start going a little smoother.

From last night until about 5:00 a.m. he hadn't taken a lot of fluids, but between 7:30 and 9:30 he took in about 7 oz. He would only take the spoon, but I'm sure by tomorrow we'll be on the sippy a little more. Just know that when you get to this point you WILL be able to get them to eat somehow. Cup, syringe, Ross Nipple, Sippy Cup, and I've even had a friend tell me she used a folded paper cup. You just use whatever works!! And worst-case scenario they have to hook them back up to give fluid through an IV. But they will get the calories they need.

He's breathing better out of his nose now too.

And we finally got a roommate late last night. But they left by about 7:00 a.m. We were so happy to have the single room as long as we did.

Got Some Strollin' to Do!

Bauer started getting cabin fever after a few days. IT WAS TIME TO ROLL!!
We loaded him up in the stroller and took a million laps around the hospital. Adam walked the halls so many times at about 2:00 a.m. that he had figured out about how many feet there were per lap and then calculated the total amount of miles he had traveled. When he told me that I wasn't sure if I should be impressed or worried. :) We were both sleep deprived, but goodness gracious. This might be getting a little out of control! :)
All I know is he got super huge brownie points because he let me sleep for about an hour while he walked Bauer. Such a sweetie.



I have to take a minute and really brag on Adam. Hopefully, he won't read this anytime soon because he'll make me erase it! :) He is the best hubby I could ever imagine having. He has been such a huge support and strength through everything. I've never ever had to wonder if he was going to be there to help no matter what the reason. From changing diapers and feeding to giving up sleep so I could have a little shut-eye. He always tries to put his family before himself. God has truly given me an amazing man and I am so so thankful.

Now that Bauer wasn't connected to every wire on the 8th floor we were able to get him out and play with toys in the game room too. We set him in the bouncer thinking that he could just sit and relax a little bit. But as the bouncer came about 3 inches from the ground I figured it might be a hazard!! What a chunky monkey. They really should put a warning on those things. "LEAD BABIES BEWARE".

Starting to play a little bit.

Now that Bauer is starting to get a little more energy he's wanting to play and move a little bit. It's actually surprising this early after surgery, but he's just doing really well.

It's amazing how quickly these little guys start bouncing back. Sometimes we look at him and are so proud. He doesn't even realize all he's been through.

So to pass the time there is a whole room full of toys for the kids. Even with all the toys though I think Bauer preferred to play with the fun orange light taped to his toe and the wires hanging from random parts of his body. The light supposedly kept record of his oxygen levels, but as many times as he pulled it off I'm surprised they ever got a solid reading.

The rest of the day we spent time letting Bauer play and taking strolls down the hallway.

We were all really tired, but excited to know that we were going home soon.

By the end of the day Bauer wasn't eating too much. We figured it was just part of the normal process so we waited it out. And any eating he was doing was now by syringe. He didn't want to touch the sippy cup for now.

Continuing day 2 -- hangin' in there.

Well things are still going well. He's taking down 2-3 oz at a time during meals. It's still kind of hard for him to control the breathing and swallowing together with the packing in his mouth so we're doing a little bit of sippy cup and a little bit of syringe. He gets TONS of air down every time. Lots of tootin' going on. But that's a good thing. He did have some new lephrechaun green poo, but the nurses said it's from his morphine and anesthetics. Pretty gross!
Adam and I are pretty exhausted and are thinking about just borrowing some of Bauer's codeine tonight! Totally kidding!!! If Bauer doesn't have that then NOBODY sleeps.

Kathy, Adam's mom, gave us a few breaks today and let us go get some lunch and just sit for a little while. She's really helped us out a bunch.

Dr. Mulliken came in this afternoon and said he looks good and made another compliment about how great his lip & nose look.
We took Bauer for a little stroll today after they removed the IV line. Of course, he loved it. Guys we can't explain how the Lord is working up here and prayers are being heard and answered. All things considered this really could not be going any better. Now, it's not a picnic by any means but knowing how December went and comparing the two it's a totally different recovery. Definitley not the norm. We know the feeding, sleeping, and healing will be day by day, but already having gone through that before we somewhat know what to expect and how to approach it. We know it's the Lord bringing glory to His name. Just praying when the packing comes out tomorrow morning Bauer goes back to eating regularly and feeling even more like himself.

Through the night and next day.

All we can say is GOD IS GOOD. I wish we could put into words how well he is doing. We haven't gotten much sleep, but he is not near as fussy as we anticipated and he has already eaten 3 times. He's only taken in about 1-2 oz. each time, but it's going down. That's all that matters. HE EVEN TOOK THE SIPPY CUP ON THE FIRST AND THIRD FEEDING!! The second one his meds were wearing off and I think he was a little tender so we fed with the syringe.

Seriously, we can't believe how amazing this little boy is. God has made him so strong. He was very squirmy until and 3 o'clock and then he finally rested for about 3 hours. Hallelujah. Oh, and I ended up getting in the bed with him. It kept him calm so I climbed up in there and figured I'd get out if they brought the S.W.A.T team in. Needless to say that didn't happen. The next shift of nurses was totally fine with it. Thank goodness.

He's already tried to escape from the bed and is constantly finding a fistful of wires to grab onto. He wants to move so bad. They are suppose to take out his IV line around 10:00 a.m. and then we can take a stroll down the hallways. AND WE STILL HAVE THE ROOM TO OURSELVES!! You have no idea how uncommon that is up here. Just a God thing!!

Day 1

We are now in our room and were so excited to see that at least for now we are by ourselves. Almost unheard of up here. We'll take it as long as we can get it. I told some friends that I just want to hang a "NO VACANCY- COME BACK IN 3 DAYS" sign on the door and see what happens. It would be funny if nothing else.
Bauer is hooked up to all kinds of wires including an IV in his ankle. He's very groggy and not himself. Totally out of it. He won't eat much these first couple days because of the soreness and the pine tar taste in his mouth. He should start coughing all that stuff up soon and clear the gunk in his throat. We've heard some babies have tons that they just throw up and others just cough up little bits. So far it hasn't been anything too crazy. It is very dark so you may want to wear dark clothing when you go.
He really isn't crying too much, but he's not sleeping much either. Mainly due to trouble breathing with the packing in his mouth. I wonder how strange it must feel going from a huge whole in your mouth to a pile of crud 2 centimeters from your tongue. I'd be a little irritated too!

The hospital has now started a new policy where parents cannot sleep in the bed with the babies. I'm not excited about it AT ALL so we'll see how things go. I tried holding him in the recliner but it's almost impossilbe with the 15 million wires hooked to him. So I've tried just to hold him the best I can up next to his bed and he falls asleep within minutes. The only problem is I can't feel my back after about 10 minutes. He is such a CHUNK!!

Time to Wake Up

Dr. Mulliken came out and said the surgery went great.
* He was able to close the entire palate.
* There may be one small pin-sized whole left, but either way it wouldn't make a difference on eating, speech, etc. If anything maybe a little bit of milk would shoot out his nose every now and then. But again, it could be completely closed. We'll see.
* He placed a packing tightly inside the palate area which will stay in for 2 days. It is soaked in some kind of antibacterial solution that has the consistency of pine tar. Tastes gross and is dark red. Pretty messy.
* He has a nice full-sized uvula - sounds funny, but it's great news - Here's why: Uvula
* * He injected steroids into Bauer's lip to help with the scarring and encouraged us to keep massaging it daily

They called us back to see our little man about 6:00 p.m. He looked so sweet. His face was pretty swollen, but not near as bad as last time. It takes a good while for them to fully awake so the nurses just have us sit by him and wait. It's hard to watch him start waking because you can tell his throat is hurting, he's obviously in pain, and is somewhat confused. The nurses said that his breathing sounded great. It didn't seem like he had as much goo in his throat as other babies. We've always laughed about how big Bauer's head it, but the nurse said it probably has played in his favor because a larger head means larger throat passage which may have helped in less gunk build-up. It's so neat to think God knew this ahead of time and purposely made Bauer with a 95th percentile head for a reason. We realize it isn't soley for the puropse of this surgery, but it's not an accident either.
"For you created my inmost being; you knit me together in my mother's womb" Psalm 139:13
"..even the very hairs of your head are all numbered" Matthew 10:30
He is in control of every thing from beginning to end.

Waiting......

While Bauer is in surgery we wait in a large room down the hall. A family liaison is on duty all day to inform the patient's family of the current status in the surgical room. They come in about every 1 1/2 hours. The first visit was around 3:15 p.m and they told us the first incision was made at 2:35 p.m which meant it took an entire hour of preparation with anesthetics and what not. So now we were looking at them finishing up around 5:30 p.m. Much much shorter than the 9 hour lip surgery.


So far we had heard that the palate recovery was much worse than the lip so we just anticipated a long restless week ahead. Having already gone through one surgery I think we were a little more mentally and emotionally prepared. We knew it was simply going to stink and we'd just have to suck it up and deal with it. We also knew that within a couple weeks Bauer would be half way to recovery. I think that helped us cope. God got us through the first part and he wasn't going to leave us now.

Clown Gown Time!

Bauer got to wear the clown gown again! It's so cute that they have baby hospital robes. Makes us laugh every time. He did great while waiting. We always hope the surgeon is on-time. No matter what happens Bauer can't eat again until after the procedure is finished. So holding him off after his 3 hour mark can get a little tricky. We try keeping him occupied with toys and people, but that can only lasts so long. The anesthetiologist came through with a few other nurses and discussed with us a new technique being used to make recovery a little less painful. It's called a nerve block. He explained that the procedure involves numbing a certain nerve in the palate area. It should help with the pain especially within the first 24 hours. The advantages far outweighed the disadvantages and we agreed to it.

Our appt. was 1:00 p.m and the doctor came in at 1:15 p.m. Whew!!



Now we just had to trust that the Lord was going to take care of our little man and everything from the surgeon to the tools he used was going to be perfectly prepared and precisely used.
We can't explain the strength we felt from everyone's prayers and encouragement back home. We have such wonderful friends and family!!
So we let the nurse take Bauer and told her to take good care of him.
You just feel so many different emotions simultaneously. Fear because of the unknown, Sadness because your baby is going to be hurting, Excited because Bauer will finally be done with this stuff for a while, and even a Peace knowing that this day is actually here and it's almost over.

It's amazing just standing there thinking about everything God has brought us to and through these past 8 months. He has continually proven Himself to be the God he says he is.
"Jesus is the same yesterday, today, and forever" Hebrews 13:8 Such a comfort.

THE BIG DAY!

Our surgery isn't until 1:00 today, but we have to be there 1 1/2 hours beforehand.

Make sure before your surgery day that you go over the food regulations. Depending on your child's age and time of surgery there are certain time constraints with solids and even clear liquids.

Everything has been going well. We were cleared for surgery, the thrush was under control, and the yeast infection on his butt was almost gone....................................UNTIL THIS MORNING!!!!!

We went to change his diaper and the yeast infection was back! aaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhh!! You've got to be kidding me! I hit complete panic mode. Then right before I had a heart attack I realized there was absolutely nothing we could do but pray it wouldn't be a problem.

So around 11:00 we headed over to the hospital and within about 15 minutes they brought Bauer back to take his vitals. We showed them the massive butt funk and they said it would be fine. Thank God!! Some nurse actually gave us this random antibacterial cream, Bicatracin, to temporarily use and it looked amazingly better even after one application. We'll probably just stick to that for now.

They gave him this little wand to keep his attention while they gathered all the info. We almost had to sneak it in the bag because he loved it so much. Now all we had to do was wait to be called back to the pre-surgical area.

Pre-Op Appt.

IT'S A GO!!!! YEAH! YEAH! YEAH!!

Oh gosh were we nervous. The nurse came in, took his vitals, and asked all kinds of questions about his recent health and medications. We told her about the sinusitis and thrush and all of the meds he was taking. His vitals were great and his lungs were clear, but she was a little concerned with the thrush issue. On to the next office. Before leaving Bauer made sure he left the room in ship shape!!

On to the anesthesiologist it wasn't her call to make concerning thrush. She was mainly in charge of clearing him from any issues that would complicate the anesthesia. He did great with anesthetics last time so there wasn't any concern.

Next we saw Dr. Mulliken's nurse. I was just waiting for her to say, "Nope, I'm sorry Thrush is like the plague. We won't be able to have the operation."

Even though there was still a little bit on the side of his cheek it wasn't on his tongue or palate so she wasn't worried about it at all.

We finally got the all clear!! We wanted to just make a full sprint to the nearest exit before Bauer coughed, sneezed, farted too loud or made any other noise that would be of any concern.

We have to call today around 3:00 p.m. to find out what time the surgery will be.

For now we are just hanging out in the hotel room.

Boston Bound - Take 3

Here we go again. Our flight left Orlando at 7:30 a.m. Bauer did great, but I could tell this time the pressure on the way down was bothering him. We tried to just get him to take what we could out of the sippy cup. Seemed to help.
I accidently left his clothes attached to his backpack carrier which had now been put under the plane so we were hoping that his little tummy wouldn't prove itself explosive once again. Thank goodness he was fine.
Once we landed we all bundled up for the 40 degree weather and headed for the hotel room.

Adam and I both agreed how much pressure we felt come off our shoulders just finally getting to Boston.

We had our ENT/audiology appt. today at 2:30 p.m. They were going to decide if tubes would need to be placed in Bauer's ear during his palate surgery.
The doctor said Bauer did have a little bit of fluid on each ear, but it wasn't bad. We are hoping that some of the fluid is from the cold he just got over 3-4 weeks ago.
After his hearing test the audiologist also said there is a little bit of hearing loss, but nothing permanent.
So based on their information and suggestions/personal opinions from family, friends, and the doctors/nurses we have decided not to have the tubes inserted at this time.


Bauer hasn't ever had an ear infection and I got the feeling that the doctors were a little surprised that the test results weren't worse. In fact, the ENT actually said that if we didn't have surgery in 2 days she would just tell us to come back in a couple of months and we would re-test and decide if Bauer's fluid continued to increase and hearing decrease and then decide on the tubes.
In short, all went well and we've passed the first bump in the road.

Tomorrow we will have our pre-op evaluation and they will let us know whether Bauer is clear for surgery. After the thrush and sinusitis we are a little nervous, but just hoping and praying that they will give us the "thumbs up".

Bubble Man!

I think one of the hardest parts about Bauer's surgeries is keeping him from getting sick beforehand. As much as you try to keep them in a bubble it seems like something always try to break through. Within the last month Bauer has had a mild case of sinusitis and within the last week had Thrush. He had a weird rash on his butt and we treated it, but it wasn't going away and then one of the nurses in Boston said it may be a yeast infection and if so to check his mouth for thrush. Sure enough I open his mouth and there are white spots on his cheeks. It's a wonder I haven't had a complete heart attack this week. I'm sure those closest to me would agree I've been a little tense lately :) "Cast your cares upon Him" (1 Peter 5:7) has come to a whole new level lately. At one point I remember saying, "Well, Lord, there's nothing we can do about it except treat what he has and hope it goes away."
Thank God we have one of the best pediatricians you could ever ask for. She is always willing to have us come up and check Bauer out at any time. We really appreciate everything she does for us. We call the minute ANYTHING seems off when we are this close to leaving.
So treating Bauer for the Thrush and yeast infection on his bottom this past week has been quite the fun. We started off having to drive to Hardee County to get the right medicines. Honestly, I would have driven to Atlanta if needed. We were down to the wire and did not want to give the hospital any reason to tell us "no" to surgery.
If your child does get sick close to the date don't give up. Get on it immediately and get them into the doctor's office. Don't wait for it to "go away". We've even had Bauer on antibiotics this past week as a preventative measure.
So now we have to get to Boston in a couple of days and get them to say he's okay for surgery.
aaaaahhhhhhhhhh!
Blood Pressure - 180/120
Heart Rate - 120 beats per minute
Nervometer - skyhigh

"Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?" Matthew 6:26-27

Wow, have we had to remind ourselves of this on a daily basis.

SOUP UP THE ARTS!!

Our local high school art club annual community project is called Soup Up The Arts. The students create and sell hundreds of soup bowls for a charity of their choice while also displaying other works of art designed throughout the year. It's a really fun night and we were honored to be chosen as one of the proceed recipients.
The customers pay $10 and they receive a home-made bowl, soup, bread, and drink donations from businesses and individuals within the community. The students and teachers worked for months getting this prepared. We are so thankful for their time and love. We can't tell you how much we appreciate it!! Thank you.
Bauer had so much fun watching everyone. Again, we can't wait until he can understand the amount of support and care people gave towards helping him. Absolutely amazing.

SIPPY CUP!!

Oh dear Lord. We knew Bauer would have to be off the bottle and on the sippy cup by the time surgery came around. Thank you to all the moms who have "been there, done that" and helped in getting us off on the right foot.

We found the Nuby Soft Wide Spout Insulated Cup worked best for us, but your child may like something else. There are many cups to choose from. Since Bauer can't actually suck yet, we chose the soft nipple because when he bites down the formula is released into his mouth. We did have to cut the valves to help the formula flow better. If we didn't cut them enough the formula would barely drip and Bauer would get frustrated. We cut some too much and Bauer gagged. After working with it we finally found a cut that worked. We liked it because the nipple is wider and when Bauer tilts it back the liquid doesn't go all over the place. This picture shows that it also fits the sippy with a handle, but we noticed that the rings are different and it spills a little bit if you interchange the rings. We decided to stick with the insulated cups to prevent mixing them up.

We started off just letting Bauer taking some apple juice out one of the sippies. He loved the juice and got used to the new nipple. Being something foreign he wouldn't ever take a whole lot from it. But one day we were just letting Bauer play with the sippy and my brother went over to hold it for him and he finished the entire thing. aaaaaaaaaaaaaaaaaaaahhhhhhhhhhhh!!! Now we knew he could do it. The only negative thing about the juice was he expected that to be in his cup and when we started sneaking in milk he knew something wasn't right. We are not sure, but the formula appeared to curdle when mixed with the apple juice. We could not find anything online about it, but we stopped mixing them just in case.

I've heard people say that God shows you things about yourself through each child. Well, this child has shown me that I don't have quite as much patience as I would like. I wanted Bauer to get this whole sippy thing so bad. There were times he would just hate the thing and wouldn't want anything to do with it. I wanted to chunk it through the window because I felt so stupid for not being able to help him get it. I realized quickly that the bottle was just a comfort for him and babies are not very crazy about changing anything. So we slowly kept working on it and tried to stay calm with the whole thing. Over about a 3 week period he gradually kept cutting out bottle after bottle. His 5:00 a.m was always the one he refused most, but then one morning he just took it with no problem. I COULD HAVE THROWN HIM IN THE AIR AND DONE A BACK FLIP! Seeing as how this would have scared the crap out of him and put me in the hospital, I stayed calm and he finished the cup. It was February 26th, my birthday, when he finally went an entire 24 hours without a bottle. Happy Birthday to me!! There was no way in heaven we were ever going to put a bottle near his mouth again because we knew he was completely capable.

One of the best places we found answers was at http://www.cleft.org/ . Go to the discussion list and check out some of the topics. If you don't find an answer type in your question and normally someone will answer with their suggestions. It helped us so much.

The most important things to remember are:

*stay calm - don't throw cups across the room - :)

*try different sippies - it's expensive, but you'll be amazed at the difference.

*ask other moms about their experience

*start early - give yourself and your child time to get use to it. they don't like change any more than we do.

*pray for patience and don't panic. They are completely capable of doing it.

Oatmeal only please.

I have no idea why we haven't tried this before now, but one day I realized we have never given Bauer oatmeal by itself. We've tried rice, fruits, veggies, and oatmeal mixes which he loved, but couldn't ever keep out of his nose. It usually lasted about 5 bites and things started exploding from his nostrils.

But for some reason the straight oatmeal bites stayed down and he loved it. He loved all the other stuff, but obviously couldn't ever finish the whole bowl. We were so excited. We could still work on the spoon technique and he was more satisfied after meals. Yeah!!

So if you child is still not able to keep solids down keep trying new combinations. Hopefully, something will work. If not, I've heard from plenty of people that it's okay. They will eat just fine after the palate is fixed. Bauer usually likes the oatmeal not too thick, but not too soupy. Sounds like a very general measurement, but that's the best way to put it.

Sometimes you just have to laugh!!

Well, as always, with Adam and I it’s an adventure. We learned a very valuable lesson on this last flight………………………………………………………..BOOK YOUR FLIGHTS EARLY!!!!! I think our seat numbers were 105 A & B. Ha!! As we kept walking back towards the plane I began to wonder how far back the seat numbers really went. We passed the front and middle sections and then came up on our seats. THE VERY LAST TWO!! Yep, the seats where you can’t hear anything because the engines are 3 feet behind you. That was us. Oh and there wasn’t any window. So now we can’t hear or see anything. But wait….what’s that smell????? Oh , it’s the bathroom right behind me. Yeah, that door my elbow keeps brushing up against. Oh man , we had to laugh. The only seat that could have possibly been worse was actually sitting on the toilet!!! It was pretty funny.
And once again Bauer made good use of all clothing that was packed. He peed through two shirts and two pairs of pants. All we had left was one pair of pants. No shirt. Nice. I can see the movie title now……..The Clampetts go to Boston. I could almost sense the thoughts of people in the terminal….
” That poor child. His parents should be arrested. Who brings a baby on a plane without any clothes on?” If they only knew. We were just glad it was on our way to Florida and not Boston. At least it wasn’t cold outside. You just had to laugh.

POST-OP APPT. IN BOSTON

We are headed up to Boston for our post-op lip appt. It’s a quick trip this time. We’re going up and then coming back the very next day. It will be crazy but I’m glad we only have to stay in the hotel for a night. The flight went well and now that Bauer is in the backpack we can manage things a little easier. He loves being in that thing. Ours is an Evenflo and it works great.

Dr. Mulliken said his lip looked great. It was a bit swollen, but he said it was normal and is the worst it would ever look. So things can only get better. He mentioned possibly injecting the lip with steroids if it’s still a bit puffy when we come up for the next surgery.
He also checked out his palate and said it was a rather wide opening. I’m not sure if that’s good or bad, but I’m just going to trust that when that time comes he will be able to do what he needs to in order to fix it. Also, after speaking with his nurse, Dottie, we were so relieved to know that after his palate surgery there won’t be any more big appts. scheduled at least until he is 3 or 4 years old and possibly even 7 or 8. It all depends on how Bauer’s speech progresses and how his mouth develops concerning the jaw and gum line. So all in all it was a very good appt. Now our eyes are set on the end of March.

My new roommate!

For the next couple of weeks I am watching a friend of mine's little girl. Her name is Ellie. Bauer loves it when she comes over. I can't say that she is quite as excited probably due to the fact she has realized Bauer is either going to steal her toys, try to wrestle her, or ram into her with his car. I'd be scared too. Ha!! They really do have fun together and enjoy loading up and going on adventures.

Having fun!!

At about week 5 we could feel the pressure decreasing daily. He could start chewing on soft toys again, we didn't have to watch him like a hawk, all of his sutures were almost dissolved, cleanings were becoming less and less hectic, and most of all his arm braces would soon be dissappearing!!

Now Bauer had to get back to his regular social life with family and friends. Here are a few pics.

A FEW SCARES

The whole 6 weeks post-surgery Adam and I inspected his suture line constantly.
* What's that black dot? suture?
* Why is the lip so puffy?
* Is that a pimple coming up? (not a good thing)
* Do I need to clean it?
* Why is it so red?
* I think it's splitting!!! (ridiculous thought, but I thought it quite a few times)
* THAT'S IT!! CALL DR. MULLIKEN!!

Dr. Mulliken was always more than happy to look over our panic-filled photos and give us his opinion. Either he would say we should clean it, just keep watching, try to pull a stitch out if you can, or it looks just fine. Here are few photos we sent in case you have days when yours may look like this. If you get worried about it never hesitate to call someone. Sometimes issues come up and it needs to be addressed quickly, i.e. infection, pimples, or certain pesky sutures.

HAPPY NEW YEARS!!

Around week 3 We talked to Dr. Mulliken and he gave us the okay to take off the Logan's Bow. He said sometime if it's left on too long that the glue used to keep it in place can irritate the skin. One side was about to fall off anyway, but we put Bauer in the tub and just kept soaking the tape and pulling it off. He wasn't really excited about it, but we eventually got the beast off!!!

It really was a new face. Kind of felt weird, but it looked so wonderful. Perfect. It was a cool way to bring in the New Year.

MIRACLE! MIRACLE! MIRACLE!!

Every time Adam and I have to change Bauer's steri-strip it's so neat to see how amazing his lip looks. I just wanted to share this picture. It's truly amazing the gifts God gives people to be able to reconstruct something like this.
By the way, after about 4 weeks we took the strip off completely because it kept getting so much gunk underneath it. It was doing more harm than good between the milk, snot, and other random goo.
We were very very careful not to let him touch it with his hands or anything else. Thank God for those arm braces.

Sittin' On Up!

Yeah!! We've been helping Bauer sit up recently, but out of nowhere one day I let go and he just stayed there. He's like a little weeble wobble. So stinkin' cute. He just sits there like, "yep, that's right I'm handsome............................AND I SIT UP!!! We know what's next.......STANDING! YIKES!

Binki Blues....

Since using a pacifier would aggravate Bauer's lip the surgeon asked us not to use it. We figured out a way to use one without having anything touch his mouth, but it was getting difficult. Bauer wasn't really obsessed with the the pacifier, but he loves to have it when he sleeps.
After talking to a good friend of ours (thanks Rebecca!) and reading the research she found we decided that going "cold-turkey" was the best way. The first night Bauer cried for about an hour. Being 2:30 a.m. it felt like 5 hours, but he eventually gave up and went to sleep. We would go in every 5-10 minutes to comfort him and it seemed to help a little bit.
The second night lasted about 30 minutes and by the 3rd night he was back to sleep within about 10 minutes. We worked nap times the same way and he didn't fight it too much at all.
HALLELUJAH!! No more binkis.

MERRY CHRISTMAS!!

We've been given so many wonderful gifts this Christmas. The obvious is a completely successful surgery on our son. But also the most incredible family and friends we could ever hope for, finding the best surgeon possible for Bauer's condition, safe flights, financial blessings, great weather, relationships with new friends from all over the country, everyone remaining healthy - no colds, flus, etc., and most of all knowing that today is the day Christ Jesus was born and without this day none of the above would have been possible.
Jesus said, "I came that they may have life, and have it abundantly." John 10:10

Finally Home!!

I was so excited to feel the landing gear touch the ground I could have cried. We loaded up, found our luggage and headed home. Unfortunately it took us 2 hours to get from Tampa to Brandon. Bauer was uncomfortable, hungry, and ready to be home. He just wouldn't stop crying. So we stopped to feed and comfort him for a little while, but it wasn't quite cutting it. After we had covered all possible basis we just headed home. He finally fell asleep.

When we got to the house we took a look at Bauer's lip and knew it needed to be cleaned. BUT HE WAS SLEEPING!!! Well, he must have been in a coma because we got him out of the car, laid him on the bed, took off the steri-strip, cleaned the lip, re-applied another strip, and he never even budged!! Poor guy was exhausted.


When we took off the old strip we realized it was the first time we had seen his lip without any sutures. We both just stood there staring. Unbelievable perfection. It's truly a miracle that within 9 hours Bauer went from having an obvious abnormality to having 2 perfect lips ready to be kissed by mommy and daddy. Although I have to say we will miss kissing those big slobbery lips and that smile that was a mile wide.

We're just so glad to be HOME!!

Just a little time-out.

Isaiah 40:28 "Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary and his understanding no one can fathom."

It is such a relief to know that even when we think we can't go any further or that nobody else quite understands how we feel God does. He knows our hurts, desires, needs, weaknesses, etc. and never gets tired of meeting us where we are to help us get through it. He understands the why, what, how, and when of all situations and can get us through anything. He created and takes joy in guiding and protecting us. We've truly had to lean on His strength through this whole thing, but especially these last 9 days. I have to admit that there were times that Adam and I thought, "Are we really going to make it?" But we have and will continue to. Some days you take 1 hour at a time. Each day sheds a little more light at the end of the tunnel than the day before.

We're so thankful for that light.

Little Houdini

While we were going crazy running back forth in the airports sometimes we would look down and Bauer would have escaped from his arm restraints pulling and tugging his Logan's Bow!!


Yet another reason to
1. Put the arm bands under long sleeves
2. Use the larger diaper pins to hold them in place.

The last thing you want is to have him scratching, pulling, or even touching his lip. Also, if his hands are free then he can grab things to put in his mouth or on his face. NOT GOOD. We were very thankful and started to understand one of the major purposes for the Logan's Bow -

Protection!

Bauer - "Destroyer of Pants"

In moving up our flights we would now have a connecting flight in Cincinnati. We were rushing rushing rushing to get bags checked, boarding passes printed, babies fed, and hoping are stomachs didn't implode from hunger. :). Once we finally got everything to our gate we had a few extra minutes to get something to eat. PRAISE JESUS!!

BUT WAIT..............What's that stuff on Bauer's pants??????? OH NO!! I ran to the bathroom as fast as I could. We'll keep this short and sweet...............Bauer came out with a whole new outfit and the old one was thrown in the garbage (trust me. it wasn't wasteful. it was for the good of all people in the airport). If I had that yellow tape used at crime scenes I would've completely dressed the bathroom door with it. Unfortunately some poor soul was soon to step into the disaster zone. I think Homeland Security entered the bathroom when I left!!! :)

Okay, so now we were changed, fed, and ready for lift off. Whew!!
We were so excited to be on our way home. All was going well and then it happened.....................
BAUER EXPLODED AGAIN AT 36,000 FEET!!!!

Adam and I just said, "You've got to be kidding me!



We weren't changing him in the bathroom because it would have been like changing him in a broom closet! So we took a blanket and went to the front of the plane where you exit and changed him. As we are bending down trying to keep from crying laughing I know people on the plane wanted to kill us. The smell alone probably made a few people pass out.

My back was to the exit and all I could keep thinking was, "please God, don't let my butt hit the bar that opens this door." I really didn't want to be sucked out of the plane at that moment.

Again, we know God was letting this happen to give us a laugh and relief. We needed it. And, of course, Bauer was loving every minute.

Bauer loves to fly!

We are so blessed that Bauer has always done well on the plane. He's never had any issues with his ears. We try to make sure he's eating every time we take off and land. Nine times out of 10 he falls asleep when he's done.
Of course, he loves to "people-watch" and wants to make sure everyone is where they need to be. He's such a ham!!
By this time he was also off the codeine and only on regular tylenol. You can see he just keeps looking better and better. The restraints are really bothering him too much either. We're anxious to see how sleeping goes when we get home.

Evenflo

Before having a baby I had never even heard of the brand Evenflo. You always here the names Graco, Safety 1st, Eddie Bauer, Jeep, or maybe Cosco.

Adam's sister gave us her stroller to use until we needed a new one. We figured it might last a month or so since it had already gone through the strain of one baby. Wow were we wrong.

This stroller made it through 4 trips on an airplane, hotels, escalators, dirt roads, being thrown in and out of the back of a truck, pounds and pounds of luggage, and one heavy baby. Not once did it ever give in. We did finally look down one day and noticed the wheels starting to bulge outward because of what we had put it through, but if we could have taken it in for a tune-up it probably would have lasted another 5 months or so.

We highly recommend Evenflo products. They are very well made, practical, and well priced.

This stroller always gave us a good laugh because it was like it was on steroids. It could carry anything. But we sadly had to chunk it after this trip. It would have been borderline abuse on the stroller to keep using it.

This picture just doesn't do it justice.

Totally a God Thing!

We got finished a little earlier than we thought we would with the suture removal. We've called the airlines in the past when this has happened and it was going to cost extra to have our flights moved up, but we figured, "What the heck. We'll try again and see what happens. The Lord may open up something."
I couldn't believe it!! I remember the Delta clerk saying, "Yes, we can move your flights up and it won't cost anything extra." Thinking it was too good to be true I was pretty sure he was going to continue with, "But the only seats we have available are with the livestock." Honestly, I think we still would have gone.

So he says "We have a departing flight at 1:30 p.m." IT WAS 11:30!!!! Aaaaahhhhhh!!! Adam and I hurried back to the room and packed up our stuff in about 15 minutes flat. We crammed stuff in our bags like crazy people. Absolutely NO organization whatsoever. Every time I thought we were done I'd look down and there would be 1 shoe, a bottle, or just random clothes that we missed and we'd have to find some creative way to shift and shove!! It's amazing how many things you can get to fit into 1 bag. Especially if you sit on it to zip it closed!!! By the way, Bauer napped the entire time. We were making so much noise I know the Lord had angels covering his ears. So we threw all the bags together and waited downstairs for the taxi.

SUTURES OUT!

Well, here we go again. We had to make sure we fed Bauer no less than 3 hours before the suture removal b/c even though it was only about a 20 minute procedure they still had to sedate him. You should receive information like this and more in a packet from your hospital about 2 weeks before going in.
Bauer can only have clear liquids 3 hours before surgery. i.e. breast milk, apple juice, infant pedia-lite. Also, all of this information changes depending on the age of your child at the time of your appointment. Make sure you double check the list ahead of time b/c it could delay the surgery.

These are pics of right before and after suture removal. His lip looked amazing. We couldn't believe how perfectly it came together. There are still certain sutures on his lip and inside his nose that have to dissolve over the next couple weeks so we still have to make sure everything stays clean, but the best part is WE CAN GO HOME NOW!!

By the way, Bauer took to the bottle right after he woke up. We were so VERY VERY THANKFUL.

SLEEPING and BUTTON UPS.

We were actually surprised to see how well Bauer slept while wearing his Arm Braces and Logans Bow. At first we weren't sleeping very well b/c we were constantly up re-strapping his braces making sure he wasn't touching his lip. Usually they would just fall down his arm and eventually fall off at night. But we finally figured out that if we put them under the sleeves it was a lot less likely to happen. We couldn't have done this without the BUTTON-UP tops. I really couldn't figure out the huge advantage in having the button-ups until this point. You can't put his arm under a regular sleeve with the braces on. Babies are flexible, but not Gumbi.

With his arm under the sleeve the braces rarely fell down and he was a lot less likely to scratch himself with the velcro. Trust me, after everything he and you will go through you don't want any chance of ANYTHING messing up his lip.

We felt a lot more comfortable letting him sleep by himself with the sleeves protecting him.

DEFINITELY BUY THE BUTTON-UPS!!

Making the Time Go By

We could have probably gone home Saturday or Sunday, but the operating room wasn't available so we are having to figure out ways to help the time pass by until Monday.

For anyone headed down this road we strongly encourage to have at least 1 friend or family their to help. It's wonderful to have people there to talk and laugh with. Makes the time go by so much faster. And the extra set of arms don't hurt either!! :)

We visited a few different areas around Boston that we could go in and walk around for a while.

It was crazy with all of the extra clothing we had to keep putting on and taking off. Ourselves and Bauer!! I'm not sure that Bauer had a "good hair day" the entire time. Lots of "hat hair".

At one point Bauer decided to create a super duty diaper (that's as graphic as I'm getting)

It seems we somehow took the extra set of clothes out of the diaper bag before we left the hotel and forgot to put them back in. So basically, Bauer was naked except for his diaper, jacket, socks, and reindeer shoes and it was about 30 degrees outside. We had to laugh. At least we had the jacket and a blanket!!

As for the clothes he ruined.........they will forever stay in Boston!!

DINNER WITH FRIENDS

Saturday Karin and John, Ivy's parents, invited us to eat lunch at their home right outside Boston. It was fun getting to see outside the city life.
Karin had homemade soup ready and it was wonderful. It was nice to get a meal that didn't come from a box or bag. :) Thanks so much guys! We loved it.
The lake you see in the background was frozen over and the porch had about 4-5 ft. of snow packed down. So beautiful.
Ivy was so sweet and let Bauer use her Exersaucer. You can tell that the arm restraints haven't put a huge damper on Bauer's ability to get around and have fun. It's amazing how he has just adapated to those things.

RACE CAR!!

I couldn't resist showing this picture. We figured at some point our arms would break off if we had to hold Bauer for the next 4 days straight so we bought a little race car for him to play in at the hotel. He loved it!! Best purchase ever!!

A 2ND LOOK!

Well, we couldn't take it any more. One of the areas just wasn't getting cleaned enough and there was also a bloody spot. So we called and loaded up the whole room and headed back for a quick clean-up.
He said it wasn't as bad as we thought. I felt a huge load come off our shoulders when the doctor said we were doing a good job cleaning. I thought, "Okay, we can do this."
You can tell that Bauer's swelling had really started going down.
We were really excited to hear we could go out around town too. Yeah! Yeah! Yeah! So we left and went to the Target near-by. I think Bauer was as excited to get out as we were.

SMILES!

Today was the first time we could actually see Bauer trying to smile again. My heart melted!! We were still getting used to the new face, but that tiny bit of smile reminded us that the same sweet little guy was still there.

He was still a little bit swollen, but each day it faded more and more.

We just hung out in the room for the next couple of days. Bauer was very busy reading the paper, taking naps, and getting all kinds of goodies from friends back home. We are so blessed to have such wonderful people in our lives. Balloons, cards, flowers, desserts, home-made cookies, and get-well letters from Bauer's friends were all sent throughout the next couple of days. We also received so many loving phone calls. One of our newest friends that we've met through this whole thing even gave us a call to see how things were going. God is good!!

By the end of this first day I had already called Dr. Mulliken and his nurse a few times just to make sure we were cleaning and applying exactly how they described. The last thing we wanted to do was let anything happen to where Bauer had to go back in to the hospital.

Again, they were both more than happy to answer our questions and even said if we ever get really worried just bring him on back for a quick look. They are wonderful.

Back to the hotel!!

Well, now are back to our home away from home. I't Friday and we have to camp out for at least another 4 more days at the hotel. Monday we are suppose to go back and have Dr. Mulliken look at Bauer to make sure everything is progressing okay and to get his sutures removed.

We were nervous wrecks over the weekend. We watched Bauer's nose like a hawk. The biggest concern was making sure Bauer's nose stayed clean and didn't get infected. We were to look for signs of pimple-like areas, blisters, increased redness, and especially any bleeding. We were on cleaning patrol constantly. Every 3 or 4 hours we would clean his suture line on his face as well as in or near his nose. The nurses gave us some sterile water, hydrogen peroxide, saline, and q-tips.

Here was the usual routine: By they way, this process always took at least 2 people!!! 3 was best b/c you had a "arm holder", "head holder", and "suture cleaner". Sounds funny, but we had it down to a science after a while.

1. Wash hands. Get Ivory soap and put just a dab with water in our hand. Clean Bauer's lip area.

2. Put 1/2 hydrogen peroxide - 1/2 water mix on areas that had any gunky type stuff. Let it sit for a few seconds.

3. Take q-tip, gently roll it over the suture areas. Try to get any gunk off. Occassionally there would be some very persistant areas that refused to let go of any crust.

You can kind of get a good look at his suture line after cleaning. It would get pretty nasty if he sneezed or got milk on it.

Best Western Roadhouse Inn

This time around we stayed at the Best Western Roundhouse Inn. It's about 2.5 miles from the hospital. The best thing about this place was their free shuttle service. Instead of having to pay $10-$20 per taxi ride the shuttle would take us anywhere within about a 3 mile radius of the hotel. The only fee involved is the trip to and from the airport. It's $8-9 per person.



The hotel also has a Target, Bed Bath & Beyond, Home Depot, Marshalls, Old Navy, & a few other shops along with several restaurants and a grocery store within walking distance. I don't advice walking, but it's that close. A couple of locals told us we weren't in the safest neighborhood so we didn't do much strolling. But it was nice to be close enough to get out for a few minutes. Cabin Fever starts setting in around day 5!!! :)



Next time we may stay at a Best Western that is right next to the hospital and just pick up groceries and what not the day we arrive. It will be nice to be so close to the hospital we can just go back, take a nap or shower and come right back without the hassle of a taxi or shuttle.

11:00 a.m.

We were discharged around 11:00 a.m., but were kind of apprehensive about leaving so soon.

1. he wasn't on the bottle yet

2. his pain was still very present - still on codeine

3. the hotel definitely wouldn't have stand-by nurses &

4. WE REALLY HADN'T HAD ANY SLEEP!!

I was told by a couple of moms that if you aren't ready to leave and don't feel it's in the best interest for Bauer then stay an extra night or two.

On the other hand we couldn't wait to get out of there. No more beeping, no more people running in at all hours of the night, only 3 people in our room, and no more bed cage or fold out chair!!

We loaded everything up and headed out.
My brother flew back to Florida yesterday and Dad has a flight out this afternoon. My grandma arrived about the time we were discharged and is staying 4 days. It's been tons of help having someone up here. Just simply knowing someone is there if you need to step out for a breather is wonderful.

48 hrs

After 2 days Bauer's face was still a good bit swollen. By 5 o'clock that morning the doctors came in and removed the packing from his nose. We could tell it really made breathing more comfortable and therefore eating was easier too. We were still syringe feeding by the end of the day, but things were improving much more than we had expected. He was taking in anywhere from 2 - 5 oz. per feeding. They weren't as frequent as normal, but he was getting calories.

Checking In

Dr. Mulliken came in and checked on Bauer the second morning. He was very pleased with everything and said, "it went together like a puzzle."

Syringe Feeding

Once Bauer reached about the 24-36 hour mark he started getting hungry. His mouth was too sore to use the bottle, so we had to use the syringe. It worked well, but took a little longer. He only took about 20 cc (2 full syringe) the first couple times. If your baby is like Bauer, he doesn't like his meal being interrupted. Every time we would stop to refill he would get a little irritated. Such a piglet!!

If you do this and have breastmilk, make sure you pour a little out at a time. The syringe will more than likely have blood on it. If you stick it back into the original bottle, it obviously won't be good for too much longer. You'll have bottles everywhere, but that's okay.

Bauer got a little extra air down feeding this way, but at least he was eating. I think his throat may have either been dry or sore from the surgery, but after a while, he began to do well. He actually used the syringe for the first 3 1/2 days. I think this is a little longer than what most babies take, but only by about a day or so. Not too bad.

There are also 2 or 3 different shaped syringes, so try them all and see what works best. The biggest difference is the tip on the end. The one that we liked had a small spout and we just kind of laid it close to the bottom lip.

Bauer's Friend

You may remember the little girl Ivy whose pre and post surgery picture we posted a month or two ago. We've been in contact with her parents since and they have been a tremendous blessing. On the 2nd day they came to the hospital to check on Bauer and see how we were doing. Such a wonderful family. They even stopped by the hotel and dropped off some toys and clothes for Bauer. Sweet. Sweet. Sweet.

When I saw Ivy I just couldn't stop staring at her lip. It was perfect. There was almost no evidence of any scarring left. Really the only reason I even saw something is because I knew what to look for. We were so impressed.

Ivy is such a sweet girl. She was loving on Bauer so much. They kept telling us how well Bauer was doing which was good for to hear because we, at that point, were starting to wonder if things were where they should be. It's awesome how God has brought so many new friends into our lives from other ends of the country.

Sleeping Arrangements

The hospital has specials beds for parents who want to sleep next to the baby. It's kind of like a cage. You don't have to worry about anyone rolling off this thing. It was very comfortable compared to the back-breaking contraption we used the night before. I think it also helped Bauer stay calmer longer through the night.

Even though it was much easier to sleep with this set-up please remember it's not the Marriott. You will have doctors and/or nurses coming in throughout the night. Usually they came in when some random wire came loose or Bauer moved a certain way and the computer couldn't pick up a reading. Also, you will have another family in there with you. Though we would have loved a single room we were thankful the set-up wasn't like a few years ago when there were 4-6 families per room. There were occassional moments when I wanted to throw the entire set-up out the window or just duct tape Bauer's wires to him so falling off was not an option.

Right when everyone would start drifitng off to sleep ..............BEEEEEEP!...........BEEEEEP!!.......BEEEEEEEEEEEEEEEEEEEEP!!

I get up to get the nurse, Adam jumps up like the building is on fire and then all is quiet again within a couple minutes. This repeats itself around 20 times a night!! After a while you just have to laugh. I will say it wasn't quite as funny then as it is now. :)

Our first full night of sleep really didn't come until about a week later! At least having a newborn you were use to not sleeping everynight all night anyway.

Not so fun moments!

Every day the nurses would have to come in and clean Bauer's sutures. If he got any type of crust on them, bubbled up, or got real swollen and red there were possibilities of complications. So they would use a long q-tip with sterile water or 1/2 hydrogen peroxide and wash out his nose/lip area. Needless to say this was not Bauer's idea of a good time. The nurses were wonderful and did such a good job. You hate hearing him get upset while they are picking at him, but it's much better than the alternative.

You will get specific directions on how to clean the area when you get discharged from the hospital. We would first wet it with mild soap (ivory or dove) and water using our finger, rinse it off with the sterile water by either squeezing soaked gauze over it or rolling a q-tip over the suture line. If there were any mucous or crusting areas we placed the 1/2 hydrogren peroxide on it, let it set, and clean it off. Not the most fun, but has to be done. For a few days they also put a bicatracin ointment (kind of like neosporin) on after the cleaning. Bauer was amazing. He is our little hero!

If you would like to see a little bit of how they cleaned his leave a comment or e-mail and I'll send it.

Each day gets better.

I kept asking doctors as they checked on Bauer, "Is this normal?", "Will this get easier?". They all assured me after 24 - 36 hours he would really start feeling more like himself. At first I had a hard time believing them. But as the hours progressed we did noticed a huge difference especially on day 2. He wasn't quite as fussy, he wanted to eat, and was back to wanting to see everything. Bauer's favorite thing is to move around. So any time someone would carry him throughout the hospital he was quite content. We were even able to strap him in the Baby Bjorn

UUGGHHH!!

We have never felt so helpless as we did that first couple of hours. Once Bauer woke up he was trying to cry, but couldn't quite figure out why he felt like crap, why his mouth hurt, and why all the noise and confusion was going on.

Please, if you have this done make sure the nurses have your child on something stronger than ordinary Tylenol. For some reason Bauer wasn't give Morphine or Codeine while in recovery. We didn't realize this until one of the nurses in his patient room told us. He was absolutely miserable and there was nothing either of us could do to help him. I can't put into words how much I wanted to scream for someone to help him because he was hurting so badly. Adam and I were both just tearing up trying to figure out what was going on. I'm sure it was a simple miscommunication, but make sure that you ask about it when you go. It made for a long couple of hours.

The nurses finally gave him some morphine and he settled down and went to sleep. This was around 8:00 p.m. He was pretty fussy throughout the night and wasn't very interested in eating. I kept wondering, "Are we seriously going to make it through this?,"This is only the first surgery. He has to do this again." I've never felt so powerless. It was probably one of the lowest points for us so far.
Adam and I both stayed in the room that night. The way our sleeping arrangements were I'm shocked we didn't have to be pulled off the couch by the 'Jaws of Life'. We were on a fold out about 2 feet wide laying side by side. But neither of us wanted to leave.

PSALMS 106:1-2

"Give thanks to the Lord, for he is good, his love endures forever. Who can proclaim the mighty acts of the Lord or fully declare his praise?" Psalms 106: 1-2

God is good. He's carried us through this entire time. His love has held us up when nothing else could. Bauer being able to have this surgery is a mighty act of the Lord. God has truly given Dr. Mulliken an extraordinary, miraculous gift. Bauer's face is being taken from what most would call a deformed look to a completely normal little boy. We praise God for the amazing gift he has given our son through incredible surgeons, nurses, and staff.

Adam and I didn't know what to do when we saw his new face for the first time. His face was fairly swollen and he was still under anesthesia. We couldn't see half of it because of the gauze and tape. Part of us kept wondering, "Where is Bauer?", "Oh my gosh, he looks so different."

But more than anything we were so thankful that our baby boy came out okay. His surgery went absolutely perfect, and though it may take us a few days to get used to, our boy is going to be even more beautiful and still the love of our life. It's amazing how many emotions you feel at one time. This is a picture about 1 hour after surgery.

5:00 p.m.

About 5:00 or so Dr. Mulliken came out and reviewed the surgery with us. He said it went perfect and then shared the difference in facial measurements of before and after. It's incredible how a couple of millimeters can change an entire face. We appreciate his determination to be as precise as possible.
He is also talked to us about a study being done with a group of doctors in Texas. They take blood from immediate members of cleft families and analyze it trying to find any type of genetic link to the cause of cleft. If you are interested please ask your surgeon or cleft team about becoming involved.

Clown Gown!

Once they checked Bauer's vitals we were called to the pre-op room. Bauer was in room C. Of course, he was flirting with all the ladies and jumping all over the place.

Dad and I were getting nervous knowing that there wasn't any turning back. This was the best for Bauer and there was no other choice. We just had to trust the Lord was going to take care of it. While we waited we put his gown on and couldn't resist doing the "butt shot".



A few different doctors came in and introduced themselves. A few anesthesiologists, nurses, doctors, and Dr. Mulliken. I have to say that each one treated us like we were the most important patient they had. We weren't a number. It's amazing the amount of confidence you have in the team when you are surrounded by such genuine care. Children's Hospital Boston is wonderful.

They finally took Bauer from us and the tears came a runnin'. Now it was going to be the day of patience. They had him in the surgery room by about 8:00 a.m. After we left we checked in at the family liaison's office. They updated us every 1 1/2 hours with news from the nurses. It was nice not to have to sit and wonder for 8 hours!
The waiting room there is large and the bathrooms & cafeteria are very close. If you have any long procedure done make sure you bring a computer, dvd player, headset, a huge bag of snacks, or something to keep the time moving. Otherwise it seems like time stands still.

We did meet the Brame family while waiting. Their daughter was having a Latham device put in. She had a unilateral complete cleft lip and palate. It was great talking with them. They were originally from the Tampa area, but now live in North Carolina. Very sweet people.
I'm sure we'll see them in the coming months between our surgeries and theirs.

About 2:00 the liaison said they were about 90 % finished. It would probably be another couple of hours. About 4:30 p.m. they had finished and Adam and I started getting so jittery! Did they surgery go well? What would Bauer going to look like? What do we need to do? A million different questions start rolling through your mind. I had to keep reminding myself that the hospital knows what they are doing and it will all turn out fine.

MORNING OF SURGERY!

Today we got up around 4:00 a.m. We had to feed Bauer his last bottle 3 hours before his surgery time. I'm not sure if Adam is smiling or is happily sleep walking.:)If you are having this surgery done and are breastpumping make sure you have breastmilk for this day especially. He can have formula 6 hours before his surgery time, and sugar water/breastmilk/ or infant pedialyte 3 hours before. So if for some reason you have stopped pumping there are other options.

We were downstairs around 5:00 a.m. waiting for a taxi to take us to the hospital. We were all in need of some serious coffee and donuts!! Actually, I think adrenaline had kicked in and we were in "mission mode". The day had finally come!!

Here are a few pics of Adam, Bauer, my dad, and my brother getting ready.

Cleared for surgery!

Bauer was cleared today for surgery at 7:30 tomorrow morning. I know it's late, but if anyone gets this before he goes please lift him up in prayer. He had a small case of sinisitus last week and even though his breathing is great, no signs of any fluid in the lungs, no fever, and no green/yellow mucous we still don't want any sign of it at any point.

He did awesome today when the nurses were screening him. We are so thankful he's such a great baby. It makes things a lot easier.
THINGS TO PRAY FOR:
1. final all-clear for tomorrow morning - no coughing, runny nose stuff
2. alert/wise minds, steady hands, gracious hearts from surgeons, doctors, and nurses
3. good attitudes and loving effort from entire hospital staff
4. patience for adam and I, help to trust the Lord over and over again tomorrow
5. while Bauer is under that he would be at peace
6. Bauer comes to easily after surgery and is not scared
7. Quick recovery, eating well soon after

There are many many more, but we would be so grateful for you to pick a few and just pray for them. We know God has heard all of the others being lifted up before now.

THANK YOU! WE'LL KEEP YOU POSTED!

Boston Day 1

We finally landed in Boston around 12:30 a.m. It was FREEZING! We were so excited all of our luggage made it. Who knew. The way the flights were going someone in Bangladesh could have worn my pants the next day! :) We have all of our luggage and the "packed mule"(baby stroller). I know people thought we were moving to Boston and had tried to skip using a U-HAUL and just take everything by plane.

Now we had to wait for a taxi to pick us up. And we couldn't just get a normal taxi. Oh no no no. We had so much stuff we had to wait in the special line for TAXI VANS!! By this time we were delirious and it was 1:30 a.m. We didn't really care. So we dressed our little eskimo and waited outside. I know Bauer thought, "Since when did Florida get so cold?" He was so stinkin' cute!!

PROVERBS 16:9

"In his heart a man plans his course, but the Lord determines his steps." Proverbs 16:9

We're going to keep this story short, but I could fill up a few pages. Sunday our flight was to leave about 11:30 a.m. As we were getting checked through security about to be at our gate, delta announces our flight has been cancelled. Hmmmmm. Now what! So for the next 12 hours the stroller looked like a packed mule between diaper bags, video cameras, purse, breastpump, laptop bag, and 2 carry-on bags. Oh yeah, and Bauer!!!

When we realized our flight wasn't going to leave until 7:30 p.m. we decided to get a room for the day at the airport Marriott. We didn't want Bauer around all those people breathing in tons of germs. The cost was orignally $239 a night, but we explained the situation and she reduced it to $99. So we finally get down to our gate and start boarding the plane. Bauer is jumping around like crazy loving every minute. I'm wondering how in the world we're going to keep him still for more than 2 minutes of our 2 1/2 hour flight. All of a sudden the pilot comes on the intercom and says, "we're having a mechanical problem. they're working on it and should be finished shortly." Okay fine, if there is something wrong I'm all about not having to jump out with a parachute midflight. I vote "fix it". About 20 minutes later the pilot says, "we will all need to deboard the plane........we have to wait for another one coming in from new york." Adam and I just looked at each other and started laughing. What else were we going to do? So we all get off and about 10:00 p.m. we boarded our 2nd plane of the day. It was truly a blessing because right as we boarded Bauer had his last bottle, the lights were off and he fell asleep the entire flight.

Oh yeah, and the flight attendants had announced that there weren't any extra seats on the flight. So as we are waiting for everyone to board we noticed that the doors are shut and everybody is on. Of course, God supplied abundantly. There was an empty seat between us and Bauer was able to lay out. The Lord continuously shows his plans are better than ours and not to freak out when things don't go the way we want. I once was told that we need to always write out our plans in pencil because God usually changes them. We wanted to be in Boston asleep by now, but God knew what we and Bauer needed.

MY NEW JUMPEROO!!!

We've started putting Bauer in the Jumperoo and he loves it. By the time he is done he's sweating, huffin' and puffin'. But now when we put him back in his exersaucer that doesn't bounce it sounds like it's falling apart because he tries to jump the same way.

Vietnamese Orphan

I thought I would share a little more about our wonderful doctor. I'm not just saying he's great because he's doing Bauer's surgery. If you do the research you will find the same thing we did.
This article was really encouraging.

Dr. John Mulliken & the Vietnamese Orphan

Christmas parade

Last Friday Bauer went to his first Chirstmas parade. He loved the lights and people. The sirens startled him a little bit, but other than that he did great.

BARBQUE / GARAGE SALE

Last Saturday the school I worked for last year, Woodlawn Elementary, offered to have a Barbque/Garage Sale and donate the proceeds to Bauer. We're not talking about just a small grill with hotdogs and hamburgers. Our local Fireman's Association offered to cook over 350 chickens halfs and members of the Woodlawn Staff prepared baked beans, coleslaw, rolls, brownies, and even sweet/unsweet tea. They sold tickets throughout the community for about 2 months or so. I think there were around 365 tickets sold. It was unbelievable. The entire day I just kept watching everyone work so hard and thinking, "I can't believe the amount of time, effort, and love that is being poured out on us. How in the world can 'thank you' possibly come close to what we are feeling?"



We also had a garage sale going in the morning. Loads of stuff was donated. Thank you for taking the time to get everything together. We were making deals all day!

To all who were involved: Thank you for helping our family. We had a great time and really enjoyed spending the day with everyone. We look forward to Bauer being able to understand the depth of what has been done for him.

The past couple months Adam and I have found ourselves standing there at the end of the day wondering why in the world we've been showered with such an abundance of care from so many people. Between 2 huge garage sales, barbques, and donations throughout the community we've been blessed more than we could have ever imagine. It leaves us speechless.

(Paraphrased)
In John 9 Jesus' disciples ask him why the blind man was born blind. Jesus answered, "this happened so that the work of God might be displayed."
Bauer's issue was not a mistake. It's clear to see that God's work is being powerfully displayed through this entire ordeal. It's amazing knowing that God had already set this in motion knowing it would bring people together and lives would be changed.

YOU ARE ALL SPECIAL PEOPLE AND IT IS AN HONOR TO HAVE YOU AS A PART OF OUR LIVES.

Button-ups!

Something you will need for you child are button-up long-sleeve shirts. It sounds easy, but if you'll notice in the stores most of the infant clothes are onesies. You won't be able to pull anything over their head because of the Logan's Bow. It's kind of like a safety bar that's put over their lip so they won't touch it. I think it may also help the lip from spreading apart too much too soon. CARTERS is one of the only brands that carry these. I found them at JcPenney, Sears and Belks.
SUNSHINE BABY at BEALLS was another brand that made them.
Each CARTERS set is a girls or boys long-sleeve button-up, short-sleeve button-up, and pants. They usually run around $10 - $17. You can usually find them on sale.
We will also be using the pajama snap-up and zip-up sets too. As you know, you can find those any where.
Here are a few links to order on-line. I found more sets in the actual store.

Click below:
JcPenney -
Belk
Sears boys Sears girls I couldn't even find the Carters set on-line at Sears, but I know they have it in the store.
Bealls

GOD IS GOOD!

WOW! I can't even begin to tell you how overwhelming last weekend was. I was reading through a few forums and asking quesitons of mom's who have "been there done that" through this whole process. I met a couple of ladies, Daphne & Jen, that have given me some of the most valuable information yet. One of them reminded us that God knit Bauer together the exact way He wanted. It wasn't a mistake. He gave Bauer to us to show us grace, mercy, and power. We can definitely testify to that truth. Thank you ladies for your wisdom and encouragement.


One of the things we were most excited about was their choice of hotel. We were originally scheduled to stay at the Devin Nichole house. Though the price is great and close to the hospital Adam and I were concerned about a few things. In August we only stayed 3 days in the same area. The only options for food were "food court" or "food court". We are definitely not being picky, but it got really expensive and obviously not a bit healthy. And getting a taxi anywhere past 15 minutes was $30 or more. We were kind of stuck! I wished we would have had a grocery store or even a few small restaurants around.

The ladies shared with us that the Best Western they stayed at had grocery stores, restaurants, target, etc. right by it. It's only 2 miles from the hospital. The best part is the free shuttle to the hospital or anywhere in town. The only fee is traveling to the airport. I was so excited I could have screamed. God had answered another prayer.

Also, it's not much more expensive because you get a "medical rate".

A New Friend

When we first found out about Bauer's cleft we thought, "Wow, we feel like we're the only ones." It's amazing how many people in our community have dealt with this. One day in church a sweet lady, Helen Coleman, a retired missionary, shared her story of being born with a cleft. She dealt with surgeries and doctors years ago. As I looked at her I wouldn't have even guessed she had a cleft lip. You could barely see any scarring. She didn't have her's repaired until she was 6 years old!! We're very thankful for how far the medical field has come and how open others have been about their personal experience. Thanks Ellen!

THANKS TO MICHAEL!

A friend of ours, Michael Sparks, makes and sells jewelry as part of his income. Two weeks ago Michael had a booth at our Annual Art Festival downtown. He offered to donate all proceeds to Bauer. He made $350.00. AWESOME!! We are so thankful for the time you took to make the jewelry and the heart you have to offer such a great gift. THANK YOU!

Check out Michael's stuff:

Michael's JEWELRY

PACIFIER

I meant to put this in a lot earlier. When we first started using a pacifier with Bauer, he couldn't keep it in his mouth to safe his life because he can't really suck enough to keep still. We usually had to prop something up beside his face or stand there holding it in place. And even then somehow he would find a way to spit it out.
One day I accidently bought a 6+ month pacifier. God knew what we needed. I noticed he was able to control it a little better. When I put the old beside the new there was a huge difference in size. The only thing I can think is that the thickness of the new one is easier to hold between his gums. Or maybe it's easier to hold with his tongue. Either way I thought I might share that. I know the "binki" has been great for us. I am a little afraid of what will happen after the surgery. He can't have it because it touches his lips. I'm hoping after 2-3 days in the hospital he forgets about it. If anyone reading has any suggestions please leave a comment. Thanks.

Here is a good site on pacifiers - MAM PACIFIER

Hungry Hungry Hippo!!

Well, we started Bauer on Rice Cereal this past week. We later added a tiny scoop of green beans. It might as well of been a prime rib dinner!! He loved it. We have to keep it kind of soupy or we play the "let's-see-how-much-we-can-shoot-out-my-nose" game. We tried different ways to use the spoon. Right now we will put a few bites towards the side of his mouth and then the rest of the time we try to put it the center of his mouth. He's getting better every time.

If you haven't used the spoon yet don't be scared if on the first couple times he blows most of it up his palate and out of his nose. They will eventually teach themselves not to do that so much.
That's why we do some of his scoops on the side.





I read an article on how to best feed solids and it was really encouraging.
Click here: FEEDING TIPS
It's great knowing that cleft babies will be on the same food track as everyone else, i.e. introducing rice, veggies, fruits, sippy cup, etc.
I think feeding was one of the more scary parts going in to everything, but it's amazing how they can adapt to whatever works. The special feeders are a tremendous help. If the one you are using isn't working, ask your doctor. They may know of something. The original bottles/nipples we were given at the hospital were very frustrating and didn't work well for us. Once we got ahold of the Habermans it was heaven!!

Delta SkyMiles

We'd like to thank to our friend, Elaine White, for having the wonderful idea of donating skymiles for our travel. Right now we have been given a total of 56,000 miles.
A HUGE THANKS to all who donated. We know there was a fee for anyone who wanted to give. Your generosity is wonderful!! This will save us over $1000.

Thank you! Thank you! Thank you!

Last Thursday our application into the Devin Nichole House was accepted. YEAH! It's like a Ronald McDonald House, but under a different name.
They have a few different houses: (click on links for details)

Devin Nichole - any type of patient

Ronald McDonald -oncology patients

Casa Monte Cassino - international patients

The Family Inn - transplant patients

Hospitality Homes - host homes in the Boston area

YWCA - Young Women's Christian Association

Here is the page listing all details for each house as well as hotels and other accommodations for family and friends that may be staying with you.

BOSTON ACCOMMODATIONS

HE FLIPPED!!

He rolled! He rolled!! Bauer rolled over all by himself!!! You would have thought Adam and I won the lottery. We started cheering like we were at the Super Bowl!! We even caught it on video. Just imagine what a mess we'll be the first time he plays football!! :) If we can figure out how to download the video we will.

Red Ribbon Run

Saturday was the 2nd annual Red Ribbon Run at Avon Park High School. Around this time of year all the schools in the area celebrate Drug Awareness Week. The Red Ribbon Run is for all ages elementary through high school. Everyone runs either 1 lap, 2 laps, or an entire mile. The school I worked for last year volunteered to run the concession stand and donate the proceeds to Bauer. They were serving homemade strawberry pancakes!! Big Thanks to these wonderful people. I really miss working with all of you.
Bauer ran a few laps (ha!) and was pooped!! :)

GARAGE SALE!!

Wow! We can't believe how many things were donated, financial gifts were given, & the amount of people who volunteered to help. It's so awesome to see what can be done when so many people work together.

All Thursday and Friday huge amounts of items were collected & placed at the garage sale site. My mother-in-law & my dad rode around town with huge horse trailers getting everything together. Special thanks to them both. I think by the end they were both sleep walking! ha!Stuff just kept coming and coming and coming. It was great!
Saturday most volunteers arrived around 4:00 a.m. to get things going. By 7:00 a.m. we had plenty of shoppers. Here is the early morning crowd.

Bauer and I came out around 7:30 a.m. (Adam wasnt' able to be there. He was taking a huge 6 hour test in Winter Haven.) Bauer was loving every minute!!! What a little social bug!! It was neat being able to show him to everyone. One guy said, "Well, that's good. I know I'm giving to a good cause now."

I must say Bauer was the handsomest boy out there and was exhausted after working so hard.

We are so thankful for every minute that was put into this. To all who helped, gave, & prayed THANK YOU!! THANK YOU! THANK YOU!

A BIG THANKS TO THE FAMILY PRACTICE CENTER! Thank you for loving us. We appreciate you so very much. It would not have been possible without you.

Adam and I were reminded how great it is to see & feel such awesome love. Sometimes we think that the little things we do for people aren't worth much, but without everyone doing "a little bit" there wouldn't have been any blessing at all.
This weekend was an awesome example of God taking every piece, large & small, and making it a huge success!!

Trust Him!!

So many times Adam and I have second guessed our choice with Boston. It's never been a question of their ability or experience, but more a question of convenience. Many times we've been asked by friends, strangers, nurses, and even doctors why we are going "all the way to Boston". But each time it happens and we begin to doubt the Lord simply brings someone or something into our lives to give us a little, "yep, you're doing the right thing". From the very beginning the Lord has guided us through every step and it's so great to know He's going to make sure we are taken care of. We found Boston Children's through a woman I've never even met, spoke to 2 surgeons within 12 hours of calling the hospital, had our 3d pics reviewed by their ultrasonographer at no cost, and have had continuous contact with nurses and doctors since April. Theses are only a few of the countless reasons we know we're in the right place.

If you are in the process of finding a hospital make sure you:
- take your time
- feel comfortable with the doctors
- get a sense of honesty & genuine concern from the whole staff - I remember every time I called the office they acted like I was important & truly made us feel "taken care of".
- find previous patients and compare the surgical results - You will be amazed at the difference between various surgeons
- discuss & compare when the surgeries are done - some doctors perform the first surgery within a month while others wait about 5 months.
-if possible, try setting up a consultation with the craniofacial team. Most of them want you to do this anyway so they can get a pre-operative look at your child.

Ear, Nose, & Throat Doctor!

Today we went to Brandon and met Bauer's Ear, Nose, & Throat Specialist. She is wonderful and has experience in cleft lip/palate. She said he looked great and would monitor him after his surgery. If you are in that area they have a very nice facility and it is extremely easy to get to.

THE LORD IS GOOD!!

We have been dying to talk to more families who have gone through the surgeries to get any advice we can. On Sunday night we got a call from a family in Boston. They used Dr. Mulliken, our doctor, and had nothing but wonderful things to say about him, his nurse, and the surgery.

Their little girl, Ivy, had an almost identical cleft to Bauer's. We couldn't believe the results afterwards. You can barely tell the cleft was ever there. She is beautiful!

The mom, Karin, said Ivy healed so quickly afterwards. She was feeding on the Haberman within 2 days. YEAH! So encouraging!!!!!

Karin gave us some details about right after the surgery that I'm sure we'll be glad we knew beforehand. Some of the things she said will look scary, but are normal and will heal well. It gave us a great idea of what to expect afterwards. We will be in contact with them throughout the surgeries and hopefully longer. They are a wonderful family. I think we may get to meet them when we go up in December.

OUCH!!

Yesterday Bauer got his first set of shots!! He screamed like crazy, but was very tough. It totally breaks your heart when you hear them crying from pain. He did great the first day, but I think today he was kind of sore and tired. He was a little more fussy than usual.

By the way, he weighs 13 1/2 lbs!!!!! AWESOME!!

Today Bauer met with the Early Steps Services team - (www.cms-kids.com). They are an early intervention system that offers services to infants and toddlers with significant delays or a condition that places them at risk of developmental delay. For us it is probably going to deal more with his speech than anything else. They try to help each child prepare for a successful experience when entering school.

After evaluating him the team said he was doing great so far and wouldn't need any services at this time. GREAT NEWS!!! Lord willing we won't need much intervention at all, but we are very very glad the option is there.

If you are not from the state of Florida you really should look into any intervention teams in your area. Ours works great with insurance. From what I understand they will cover whatever services your child needs that your insurance, medicaid, etc. won't cover. Such a blessing!!

I must say Bauer was being a little flirt with all of the ladies this morning. He has become quite the little "ladies man"!!

I HAVE HANDS!!

Bauer discovered his hands!!! He hasn't quite figured out what they do so he just chews on them. Makes sense to me!! :)

GROWTH SPURT!!

Well, it seems Bauer is going through a growth spurt. We figured this out quickly after last night's feeding. Right now he's anywhere between 4-5 oz. every 3 hours. Last night at about 8:00 he ate 11 oz of formula/breastmilk. He just kept eating and eating and eating. I'm pretty sure that if I would have put a piece of beef jerky in front of him he would have swallowed it whole! :)

It's actually very exciting for us. It just shows how incredibly well he is eating. We are so thankful. It will be fun to see how much he has gained at his appointment in a couple of weeks.

Children's Hosptial Boston - Dr. John Mulliken

We finally made a trip up to Boston to meet the surgeons, nurses, and everyone else who has been so incredibly helpful. The trip wasn't bad at all. Bauer slept during both flights.

The accomodations near the hospital are great. Our hotel was one block away. When we go up in December we are hoping to stay at the Devin Nichole House. It's like a Ronald Mcdonald, but under another name. It's also very close to the facility.

We met Dr. Mulliken and his nurse Mrs. Dotty Macdonald!!

They were very excited about doing Bauer's surgery. He said he thought the lip would be one of the easier ones he's done. Very good news!! They both are truly passionate about their work.

While there we received videos and paperwork on clefting. I wish we would have had these on day 1. He showed us some other surgeries he had done. The results were great. He explained some of the fine details that he considers before each surgery. It was pretty amazing.

Another neat moment for us is when Bauer started smiling and laughing. It wasn't the smile he'll have in 5 months, but it still melts your heart. It proves, once again, other than the cleft he is a normal baby boy who loves life as much as any other child. It's neat to think he's only gonna get more and more handsome. IF THAT'S POSSIBLE!! :)

Here is a video:


Smile Movie - Sept. 16

FIRST DOCTOR'S APPT.!!

Today we met Bauer's pediatrician Dr. Liana Sanchez. She is with Gessler Clinic Children's Division in Winter Haven. She and her nurses are absolutely wonderful. We are soooo excited we found them. She said he looks great and is very supportive of our whole situation!!

First Couple of Weeks!!

I think one of the biggest issues cleft parents face is feeding. The hospital sent us home with Nuk nipples and squeezable bottles. We had to squeeze every bit of milk into his mouth. Then we got in touch with some nurse at Shands Hospital in Gainesville, FL and they advised us to use the Mead Johnson nipples. They have a cross-cut tip. They worked better and we could get more down him faster than the Nuks. The Nuks were taking anywhere from 45 min. to 2 hours to get 3-4 oz. down. The Mead Johnsons help us to only 20-30 minutes. There are a few more "cleft nipples", but these are the only ones we tried.

Finally, a friend showed us the Haberman nipples. We had heard about these and the Boston staff advised us to use them. We just didn't get any from the hosptial and hadn't ordered any yet. THEY ARE WONDERFUL!!! A HUGE LIFESAVER!! This website gives specifics on how to use it - http://www.medela.com/NewFiles/pdfs/Haberman_Inst.pdf

We used the longer nipple. Bauer didn't do well with the shorter. I've heard the smaller one is for smaller mouths. Don't really know.

It took us (mom,dad, and Bauer) a few times to figure out how to properly use them, but once we did it was great. He did a lot of it on his own and was still getting down at a normal rate.

With any of these we had to remember to BURP, BURP, BURP!! So much extra air getting in means lots of extra tummy bubbles coming out!! :)

We found another cleft mom's suggestion for leaking bottles. Occassionally, the teats (nipples) will leak if not put on properly. Somtimes they're on right and still leak a little bit.

"We discovered how to eliminate or minimize the leaking. If you notice there is a grove in the disc. This is where the leaking milk comes from. A simple way to fix this is to line that groove in the disc up with the flow line you use and the tab on the collar. This will keep the grove always on the top so milk doesn't drip out of it. I loved these bottles and hated them until I learned to put them together right. Also, not all store bought bottles will work with them. With some the teat will pop right off. What a wonderful thing to happen when you are trying desperately to feed a starving baby that has a hard enough time to eat. The Haberman shouldn't be boiled like you would your other bottles. Exposing them to hot water can ruin them and cause them to leak. Even warm milk can do damage. When I called Medela about this they said only serve room temperature milk in the Haberman." (cleft mom)

BIRTHDAY!!

He's finally here!!! July 17, 2007 at 2:36 a.m. our beautiful boy was born. We were so excited. I was very thankful that we knew what to expect beforehand.

After birth we found out both palates (hard & soft) were cleft. Maybe it's a mom thing, but I immediately went into "medical mode". I just kept thinking, "okay, when do we go the hospital?, how do I make it easier for him to eat?, can he swallow?, will he need a Latham device? ( www.newfacesfoundation.com/Latham.html ), how early does the surgeon need to see him?, will he need tubes in his ears soon?, how is his hearing?, etc. etc.

We were just trying to prepare the best we could to make this as smooth as possible for Bauer.

It's amazing how quickly we didn't "see" his abnormality. Through our eyes he was a normal beautiful, happy boy. In the hospital the doctors and nurses were surprised and excited that he could get a little bit of suction and was eating so well. We were beginning to understand that our baby was just as normal as any other baby. He would just need a little "fixer upper". These pictures are of him in the first week.

May - June 2007

Over the last 10 weeks of our pregnancy we heavily educated ourselves. We were scared to death with what we witnessed off the internet. Nobody had given us any idea of what to expect. The first time I typed in "cleft lip/palate" my husband and I just took turns crying the rest of the night. These are some examples:

<---------------

First, your child will NOT end up looking like these children after surgery. In fact, the majority of all cases are finished by 18 months. Other than maybe a few crooked teeth, their outlook will be nothing like this. I'm not a doctor and I can't guarantee your final result, but from what I've found nobody ever goes past 3-4 yrs. old without almost everything being completely repaired.

After reading articles and speaking with families familiar with this issue we started to realize that it wasn't going to be the end of the world and that every part about it, no matter how extreme, was repairable. It didn't mean the next year would be stress free, but it was reassuring knowing that there was a "light at the end of the tunnel".

In May a friend of ours found at Children's Hospital in Boston, MA. http://www.childrenshospital.org/ We had been looking around at different hospitals not really knowing what was good and what we should stay away from. I contacted this hospital and within 12 hours I had talked to both surgeons. After speaking with them we knew it's who we wanted to use. It's like the Lord just flew up the doors to these people. Dr. John Mulliken is one of the surgeons. He regularly answered our e-mails and phone calls. I think this was one of the most impressive points about CHB because we hadn't yet given them a dime of our money. It was easy to see that Dr. Mulliken was passionate about his work and his joy came from changing the lives of children.
We sent the hospital our 2d & 3d ultrasounds and they discussed the possible degrees of cleft we could be facing. They suggested getting a fetal MRI to find out about the palate. By this time I was around 34 weeks pregnant and didn't feel comfortable flying up to Boston to have it done. We would have to wait until birth to get an answer. However, I highly suggest doing this. Even though finding out doesn't change anything, it gives you a head start on what to expect. Make sure you find a place that has experience doing this. It's not a popular procedure and only a handful of hospitals do it. All I know of are Boston and Vanderbilt.

But if you are unable don't stress about it. We decided it would be best for us to just prepare for the worst. Then aren't any surprises!!

April 24, 2007

On April 24, 2007 we were 30 weeks pregnant. We were both very excited to soon be getting a 3-d view of our baby boy. Was he going to have my face? my husbands? could we see his hands? his feet? As we watched him move around we noticed something wasn't quite right. My husband asked, "Are his lips suppose to look like that?". The ultrasonographer went to get the doctor. Of course, we were immediately in "oh-no-what's-wrong" mode. The doc came in and told us the baby had a cleft lip. They wouldn't know anything about the palate until birth.

He said it only happens in 1 and 800 births. I'm not sure if that was suppose to make us feel better or not. Honestly, at that point I don't know that anything could have made us feel better. Naturally, my husband and I were scared and confused at what we had done wrong. A few days later our doctor suggested we see a "specialist". (Our OBGYN team was very supportive and tried to help in any way they could. We couldn't have asked for better)