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