Surgery Day and follow-up

Well, today is Saturday (almost Sunday) ... surgery was 4 days ago. What a wild ride it has been.



Let's start with surgery day: Tuesday 9-14-10

- Arrived 6:30 AM at hospital for pre-op

- Surgery started 8:45 AM

- Surgery was 5 hours long

- Around 2 pm --- got to see her first time in recovery --- and yes, I cried



She was running a temperature, so they had to give her a tylenol suppository to bring it down. Good news was that her lungs were clear. HOWEVER, the little stinker couldn't keep her oxygen level up, so they had to leave her on Oxygen (O2). The O2 mask wouldn't stay on, so they had to change her to an Oxygen face tent ... THAT was fun ... NOT !!!

She came off of O2 about 1 am that first night ... late enough that the Dr Rutledge decided to keep her 1 more night. That wasn't a problem for me....I'd rather have an extra night than go home too soon.

About 5 am that morning, she started drinking a bit from her sippy cup. I decided that it was time to switch her to oral pain meds if possible...the Morphine IV was keeping her VERY groggy, and we needed to get her drinking from a cup so she could go home. The Dr's switched her to Tylenol with Codeine....and here came the night terrors. That was rough ... when she has a night terror, you can not hold her. Her eyes are wide open, and she is screaming. At home, I lay her in the floor, and then I lay close to her and talk in a soothing voice until she comes around ... can't do that in a cubicle in the hospital. Aunt Kelley got her first experience with night terrors.

Wednesday was pretty uneventful. Mari-Grace wanted to be held ... by whichever one of us wasn't holding her at the time ... she went back and forth from MaMa to Aunt Kelley to Omaw all day. And that is okay ... not once did she reach for a stranger to take her. Most of the time, she wanted her MaMa, and when it came time for sleep, MaMa slept propped up in the hospital bed with Mari-Grace on her (and that was perfectly OK by me).

Thursday morning, the doctor took out her tongue suture. In one of the pictures, you can see a black string hanging from her mouth. Dr. Buckmiller placed a tongue suture so that if she had trouble breathing, they could open her airway really quick. It took a whole 2 seconds for Dr. Rutledge ( one of Dr. Buckmiller's residents) to remove the suture. We were given a fluid goal ... 4.5 ounces in 3 hours. The race was on !!!! Mari-Grace would take 2-3 ounces then stop.
We got 3.5 ounces of strawberry pediasure down her ... and she was done. We had 1 hour left in our race against the clock ... AH HA ... an oral syringe. She was taking her meds well ... why not try fluids the same way. The nurse brought us a 30 ml oral syringe ... we filled it up with pediasure, and in about 15 minutes ... we met our fluid goal !!!

We made it home Thursday about 11:30 am. We walked in the house, and Mari-Grace started babbling very quietly. By the time I made it to the living room door, she smiled, sighed and said "I Home".

We made it pretty good Thursday. It was a bit of a challenge to find things she'd sip out of a cup.

In a bit ... I'll post some tips for feeding a Cleft baby on a liquid diet.

Friday was a good day... nothing exciting, well with the exception of getting grins and giggles.

Saturday was a good day ... I discovered that she loved to take walks outside to soothe her. We'd get in her wagon/car and go around the block. I'd stop at every red car, mail box, fire hydrant, etc and get "GAS" ... she had to either drink something or take food for us to go again.
Worked like a charm.

Her biggest thing is being cranky. Let me re-phrase that ... she is C R A N K Y !!!!!!
She wants to be held, but doesn't want us to hold her. She wants to get down and play, but just cries. She wants me to sleep with her ... but doesn't want me near her. Omaw figured out that she'd ride in her umbrella stroller in the house. THANK GOD FOR THAT INVENTION !!!!

Saturday night was really rough. Omaw and Aunt Kelley went home. MG decided to be up every hour crying. Finally about 3 am, she ate some baby food fruit, drank some pink chocolate milk ( aka strawberry) and went back to sleep. She and I slept about 5 hours solid !!!

Today has been rough. She's really cranky, tired of being at home, tired of being at Omaw's ... we can't let her climb on stuff, because if she falls and hits her face, she can knock everything loose...she cried for about 30 minutes. She wouldn't let me touch her... I laid in the floor and cried with her. I finally called Omaw for back-up. My momma came and took her home with her for a bit so I could rest. That seemed to help.

She's been asleep now for about an hour and a half. I'm praying for a peaceful night's sleep since I have to go back to work tomorrow (Monday).

All in all ... Mari-Grace is doing well. Her lip and mouth looks great. She's just tired ... and so is MaMa. It will improve ... everyday is a step closer to being back to normal.

Keep us in your prayers as she heals.
Thanks ...
Love, Kammy