December 30, 2007

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.


December 26, 2007

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.

December 22, 2007

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

December 21, 2007

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.

December 20, 2007

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.

December 17, 2007

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!

December 16, 2007

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.

December 11, 2007

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.

December 10, 2007

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.

December 6, 2007

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

November 29, 2007

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".

November 21, 2007

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:

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


November 11, 2007

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!!

November 9, 2007

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!

November 8, 2007

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.

October 29, 2007

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.

October 22, 2007

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!! :)


October 15, 2007

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!!


October 8, 2007

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.

September 26, 2007

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.

September 25, 2007

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.

September 19, 2007

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!!

September 14, 2007

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"!!

September 8, 2007

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!! :)

September 6, 2007

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.


August 31, 2007

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.

August 23, 2007


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

August 22, 2007

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!!

August 21, 2007

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)
Unfortunately, the specialist wasn't the most tactful. As if we weren't scared enough, he decided to let us know our child had a 5% chance of Downs Syndrome because of the cleft. We soon found out that there is no correlation between the two. Several other doctors gave us a strange look when we asked about it. We're still kind of confused at what that guy was talking about.

One thing I want to mention is that he actually brought up abortion. When someone says this you automatically think, "It must be bad if that's an option". Trust me, this guy was the worst person for us to go to. We never would have aborted for any reason, but he made us feel like our new adventure into parenthood was going to be anything but joyful.

Let me fully assure you that cleft/lip palate is not as bad as this doctor made it sound. It is a challenge and involves research and special needs resourses, but please know that it can be dealt with in an incredibly successful way.

NOTICE!

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