One Eye Open

Sleeping in a hospital isn't sleeping. It is a sequence of closing your eyes and opening them when beeps occurs, when a nurse is jostles you, and when true silence is heard. Sloane and I made it through the first night after surgery with no alarming events. I was brought right back to our NICU nights with the sounds of the beeps around us and the heart-breaking sights.

One part of the anticipation of Sloane's surgery was rooted in our hospital stay. The visions at Children's can be heart-breaking. Walking around the ICU hurt. There were families like us, in the past, who were living there for months. Patients' rooms were decorated like bedrooms from home and the family room looked like a kitchen you would see in a dorm room. Food labeled with each person's name. I thought of the NICU...our 7+ weeks of life. We were these families except our child was an infant. No words were needed to explain the whys of where we were. These families had children. Children the age of Sloane give or take a year and they there living in a hospital with their sick child. I could not imagine the conversations between parent and child. Heart-breaking. Our 24 hours in the ICU left us with a sick feeling down to our cores.

My aunt, ti-ti, summed it up best......"Anyone who thinks they have problems, needs to spend an hour here. Then they will see what real problems are." Aint that the truth!! Every time we go to Children's, I am left feeling like....can I please go home with my child and her cleft and never come back here again. In our home, Sloane's cleft was and can be at times life altering. But in the world of illness, disorders, birth defects, and any health concern.....one hour at Children's shows us that Sloane's cleft is manageable in comparison to what some children and their parents face.  

Once we opened our eyes officially on Tuesday, Sloane was better.... but standing firm in her refusal to take orally meds. She had fought them off thru Monday night. I didn't think she would be so strong in her convictions in the hospital in front of the doctors and nurses. Luckily we plopped or pushed in some Tylenol suppositories while she was out like a light! haha!!! We were moved to a regular floor and battled through the next few hours of Sloane being not her joyful self. When asked, she said she had no ouchies, but her affect begged to differ.

Come Tuesday night, we unplugged her IVs and took a walk. Sloane couldn't believe it!! She was up and out of her bed. We saw a nurse that had Sloane 3 years ago at her first cleft repair. I remembered her vividly because she encouraged us strongly to let Sloane (9 months) sit in her stroller late at night next to her while she charted so my hubby and I could go to dinner. When I was reminding her of the story, I couldn't actually believe I did that back then. But I had.

We spent most of Tuesday night after mammie, ti-ti, auntie ronda, and Jamie's visits and a balloon delivery from cuzzy......walking. All Sloane wanted to do was walk around now that she knew she could. We walked and we walked. It was nice to Sloane to get some movement. Long after dinner, my hubby headed out and his 2 girls nestled into bed together again and slept. Sloane with 2 eyes shut and me with one eye open!

We got 80% clearance to come home at 4:37am...yes, 4:37am. That's when Dr. Rahbar's staff came in to see Sloane. I couldn't believe that at 4:37am we were in a full discussion about Sloane's progress!! But we were! The doctors had 2 eyes open!!

Wednesday am was LONG........the waiting game! We waited for the A-OK from Dr. Rahbar to come home and then waited into early afternoon to be discharged. While we waited for our car, Sloane said: I can't wait to go home. It's going to be a new day!!!! I had to laugh!!

Once home, Sloane was so excited to see her things and play...play with no running, no jumping, no yelling, no crying, no rough play.....