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."
December 30, 2007
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.
Posted by Bauer Smehyl at 1:46 PM
Posted by Bauer Smehyl at 1:24 PM
December 26, 2007
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.
Posted by Bauer Smehyl at 6:07 AM
December 22, 2007
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!
Posted by Bauer Smehyl at 7:34 AM
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
Posted by Bauer Smehyl at 7:16 AM
December 21, 2007
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.
Posted by Bauer Smehyl at 3:26 PM
"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
Posted by Bauer Smehyl at 3:12 PM
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.
Posted by Bauer Smehyl at 3:12 PM
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.
Posted by Bauer Smehyl at 1:40 PM
December 20, 2007
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.
Posted by Bauer Smehyl at 6:24 PM
December 17, 2007
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
Posted by Bauer Smehyl at 5:15 PM
December 16, 2007
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!!
Posted by Bauer Smehyl at 11:00 PM
Posted by Bauer Smehyl at 4:19 PM
December 11, 2007
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.
Posted by Bauer Smehyl at 3:50 PM
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.
Posted by Bauer Smehyl at 12:23 PM
December 10, 2007
December 6, 2007
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.
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.
Posted by Bauer Smehyl at 8:37 PM
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.
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.
Posted by Bauer Smehyl at 6:54 AM
November 29, 2007
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".
Posted by Bauer Smehyl at 6:37 AM
November 21, 2007
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!
Posted by Bauer Smehyl at 7:54 AM
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:
Posted by Bauer Smehyl at 7:29 AM
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
Posted by Bauer Smehyl at 6:57 AM
November 11, 2007
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!!
Posted by Bauer Smehyl at 11:33 AM
November 9, 2007
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.
Posted by Bauer Smehyl at 5:25 AM
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)
Posted by Bauer Smehyl at 12:54 PM
October 29, 2007
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.
Posted by Bauer Smehyl at 5:39 PM
October 22, 2007
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!! :)
Posted by Bauer Smehyl at 7:18 AM
October 15, 2007
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.
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.
We are so thankful for every minute that was put into this. To all who helped, gave, & prayed THANK YOU!! THANK YOU! THANK YOU!
This weekend was an awesome example of God taking every piece, large & small, and making it a huge success!!
Posted by Bauer Smehyl at 4:22 AM
October 8, 2007
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.
Posted by Bauer Smehyl at 7:31 PM
September 26, 2007
Posted by Bauer Smehyl at 7:23 PM
September 25, 2007
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.
The mom, Karin, said Ivy healed so quickly afterwards. She was feeding on the Haberman within 2 days. YEAH! So encouraging!!!!!
Posted by Bauer Smehyl at 12:07 PM
September 19, 2007
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!!
Posted by Bauer Smehyl at 4:42 PM
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.
Posted by Bauer Smehyl at 7:51 AM
September 8, 2007
September 6, 2007
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! :)
Posted by Bauer Smehyl at 10:00 AM
August 31, 2007
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.
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.
Posted by Bauer Smehyl at 8:12 AM
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
Posted by Bauer Smehyl at 8:20 AM
August 22, 2007
Posted by Bauer Smehyl at 11:05 AM
August 21, 2007
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)
Posted by Bauer Smehyl at 1:03 PM
Posted by Bauer Smehyl at 12:41 PM
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.
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.
Posted by Bauer Smehyl at 11:59 AM
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.
Posted by Bauer Smehyl at 6:07 AM