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.

NOTICE!

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