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.

video

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

NOTICE!

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