A Conversation at Lunch (in pictures)

This boy is hilarious. He makes the best faces. 

Enjoy. 

Cleft Repair, Tongue Lip Adhesion Reversal

Hospitals make me nervous. I'm glad they exist, but I'd rather do without them. One reason I have my babies at home is to avoid the hospital scene. 

But, it's a necessity of our lives right now. 

Joe had his big surgery recently. The one that is going to change everything--- his cleft is now repaired, and his tongue is now free to move around. 

And here are some pictures: 

This is right out of surgery.

Joe felt best being held. He didn't get a lot of pain medication because they were concerned about his respiration being depressed by the medication. So, Joe was uncomfortable and wanted to be held. 

The anesthesiologist came out to tell us that Joe was such a "fascinating" case, different from all the normal ones they do. A little challenging, but mostly interesting. It went well, but looked rough because of the stitches and swelling.

 I stayed with Joe while he was inpatient. The next morning, I helped him get dressed. And we went for a couple wagon walks. 

 He's in PICU, so he's on constant monitoring, you can see the monitor in the next picture… monitoring his heart rate, respiration rate, and oxygen saturation levels. 

The nurses loved seeing Joe up and about. Joe insisted on moving. If we stopped for longer than he thought we should, Joe would rock his little body back and forth to tell me to get moving. 

The next day we were moved from intensive care to the regular hospital floor. Honestly, we didn't need to stay in the PICU as long as we did, the hospital just didn't have the beds on the regular floor. 

Joe liked to be up and doing. Like every other Graff I know. Even when he was obviously falling asleep, he wouldn't let me lay him down to sleep. 

I like how he uses his arm braces to support his snoring habit. 

 We stopped making him wear the arm braces as soon as he got home; the braces were there to keep him from scratching his face, which wasn't a problem for him.

By the next day, Joe was ready to leave. He didn't want anyone else to touch him besides Mom, particularly after one of the surgical doctors felt around the inside of his mouth and made him gush blood. We were both done. 

So he cuddled with me most of the day. And Daddy and Rae came to pick us up that night. 

I learned a lot this go around. 

First, if I can help it, I want to be with my baby in the hospital 24/7. It's stressful being at the hospital, but less stressful than being away from him. 

I brought common sense with me that doctors seem to miss… like don't make the baby scream, feed him, and then be surprised when he throws up. 

Advocating for Joe is important. Helping him get up and feel like a person--get dressed, go on wagon rides, and find the play room is an important part of healing. Saying no when doctors want to do something that is not in Joe's best interest. [Example: a resident wanted to "feel inside his mouth"right after Joe had eaten. I told her to wait twenty minutes for his stomach to settle. She insisted; I held my ground. She huffed out of the room.] Giving him love, reassuring him when he's scared and sad and hurt.

As Joe has been healing, he's been drooling buckets. Think, soaking through a receiving blanket rolled up as a bib every two hours. As his mouth gets less swollen, though, he is not drooling as much. He is able to close his mouth and swallow better. 

When are we going to start feeding him? I don't know. We're still healing. 

Two weeks after this surgery, Joe went in for another surgery---having ear tubes placed. It has quicker… 1.5 hours and we were discharged right afterwards. I heard Joe in the PACU (post anesthesia  care unit) around two corners and three walls after his surgery was done and he was waking up. He screamed while we were getting instructions, while I was filling out paperwork, when I put on his regular clothes, while we were walking out to getting parking discount ticket, and marching back to our car. As soon as I put that little boy into his carseat (which he normally protests) and buckled his seat belt, Joe stopped yelling and looked at me---then was calm for the whole car ride. 

He knew he was going home. 

Every morning when Rae wakes up, he climbs into bed with Mr. Graff and me. The morning after Joe came home from his cleft repair surgery, Rae snuggled in next to me and said, "Mom home. Dad home.  Rae home. Joe home." 

Yes, we're home, Rae. And home is where we want to be.