Oh, that child of mine

My silly child. I love him to pieces, and he keeps me on my toes.

One night, sometime between putting being put into his crib and going to sleep, Raeford stripped out of his footsie pajamas and chucked them overboard. He was a bit cold when he woke up.

He really wants to dress himself--and has some success. We bought new shoes, slip-ons, which he's been sporting every chance he gets. I bought them a little big (because I don't want to go shopping again in two weeks), so he gets into and out of them pretty easily.

One night at dinner, Raeford finished eating and decided to stuff a raisin in his ear. We could only see a little bit of the raisin and he was pushing another one into his eye. Mr. Graff retrieved the tweezers but  I got that ear-waxy raisin out first. I won.

I tried teaching Rae to wipe his hands on his pants. He doesn't like dirt, mud, mulch, etc on his hands

and frequently asks me to wipe them off for him. I demonstrated by wiping my hands on my pants, gesturing and explaining. The next time he needed to wipe his hands, he wiped them... on my pants.

Grandma taught Rae to blow air through his veggie straws. Veggie straws have just enough vegetable puree in them to make me feel better about his diet and just enough potato and grease to make Rae inclined to eat them. So, to convince the boy to eat his straws, I blow through the first one. He thinks it's great fun and proceeds to play and eat. One point for Grandma.

Rae loves his wookie slippers. It's fun watching him stomp around the house with a huge mass of fur on his feet. Mr. Graff put one of his green shirts on Rae, over his pajamas, and as he walked around, the green shirt looked like Jedi robes. Priceless.

Rae loves all things "grown-up". He wants to cook, so he'll pull over a kitchen chair and starting making something at the counter. The spice rack had to go because Rae kept using all the spices. The worst was seasoned salt. I wanted to rub my eyes all day. 

We have to keep Rae and Joe separated during feeding time because of all the medical equipment. Baby gates are my friend. Rae tries to lift his leg over the rail. 

He figured out the screwdriver. 

He's taking a butter knife to the dishwasher. 

And he's sporting Jedi robes with his wookie slippers. 

Recovery

The hardest part of the Tongue-Lip Adhesion was recovery. 

Joseph had the surgery on December 3, 2012. He was sedated, to one degree or another for a full two weeks after surgery--and we could not hold him and he could only weakly respond to us, hold our finger, struggle to lift his head. We all had a hard time. 

Mr. Graff and Joseph, the day before surgery: 

Joseph, two days after surgery: 

Four days after surgery:

Seven days:

Nine days: 

Eleven days: 

Twelve days: 

Fourteen days: 

Sixteen days: 

In the last picture, Joe is finally off of his air flow (VapoTherm), breathing on his own and looking around. Mr. Graff and I felt relief at seeing Joseph's progress. 

I wish I had known how long recovery would be and more of what to expect, but how would you prepare for something like this? I'm not sure I could have prepared for this. Even as time goes forward, these memories feel fresh.  I cringe looking at these pictures. I don't sleep when I have to take Joseph back to this hospital for a check-up. I hear Joseph cry like some people feel phantom phone vibrations in their pockets. 

I can't say that I feel grateful for going through this trial--I'm not that righteous. I do feel grateful that God helped me carry the burden. I'm grateful that Joseph is home with me. And I hope someday that memory will bring into relief the good and make the rest a little more faded.

Tongue-Lip Adhesion

A little before Thanksgiving, Joseph had a "sleep study" done. He had six electrodes attached to his head and was covered in a sock that had a hole for his face. They monitored and recorded data for six hours.

The sleep study showed that he had obstructive sleep apnea and no indications of central apnea. His apnea episodes happened on average 35x an hour. What the pictures don't show is that Joe was getting tired. His eyes were bloodshot and he was lethargic. The surgeon explained that it was like Joe was running a marathon. At the beginning of the race, he could keep pace fine, but the longer it went on, the  more trouble he would have keeping up. Surgery was needed.

Before we could discuss our options, I had a dream. I dreamed that Joe would have a surgery to move his tongue forward so he could breathe. So, when we were presented with three options: tracheotomy, tongue-lip adhesion, and jaw distraction; I knew we needed to do the tongue-lip adhesion.

Joe, three days old: 

Joe, twelve days old:

Joe, thirteen days old: 

Joe, fourteen days old

I'm glad I had that inspiration because the next several weeks were hard on us. Rae and I were sick the day of surgery, so I was not there and Mr. Graff had to work. Tongue lip adhesion works by cutting the back of the tongue, moving it forward, anchoring it to the jaw bone and stitching the front of the tongue to the bottom lip. This opens up the airway, just enough, to help Joe breathe until his jaw grows and he can breathe without the tongue-lip adhesion. 

So, at 18 days of age, Joe had his first surgery.

Pierre Robin Sequence

"He's coming!" said Mr. Graff

"It's your dark-haired son," said my midwife. I told her I had been dreaming of a dark-haired son.

"I see shoulders, chest... You're doing great," Mr. Graff encouraged. At this point in labor, I needed encouragement. My 10 lb. 5 oz. was about half-way out and I thought if he got stuck, I was done for. He didn't. He came out in a couple pushes.

We waited for his first breaths. They sounded wet; he couldn't clear the amniotic fluid from his lungs. my midwife started Joseph on oxygen. She told me hold him close and tell him to breathe.

"Don't push out your placenta!"

"I'm not," I said. Out it came.

It soon became clear to us that Joseph needed more care than we could give him at home.

"Mr. Graff, call 911."

Twenty minutes after he was born, Joseph was taken out of our home on a cookie sheet to the ambulance waiting outside and driven to the local hospital. A few hours later, Mr. Graff called to tell us his weight and length and ... that Joseph had a cleft in his soft palate.

About 1 in 700 babies in the United States are born with clefts.

Later that day, I headed down to the hospital to see Joseph. He was lying on his stomach so he could breathe, hooked up to several machines and monitors.

"I think he has Pierre Robin sequence," the nurse told us. "Go look up information and pick out the best hospital for him to be at." She urged us to get informed.

About 1 in 14,000 babies is born with Pierre Robin sequence. It's believed that early during gestation, about 6-8 weeks, the baby's jaw gets stuck in his collarbone. Then, around 12-14 weeks, when the baby starts moving, the jaw becomes un-stuck, but the delay in development never catches up. The small jaw prevents the tongue from coming down properly so the soft palate does not fuse, resulting in a cleft. Pierre Robin babies present with a micrognathia (small jaw), U-shaped cleft of the soft palate (Joseph's is actually almond shaped), and a tongue that blocks the airway.

When I look at these pictures, I think about how little we knew. We thought Joe would only be in the hospital for a couple of days because we still had no idea how serious this was.