It Occured to Me

That I have spoken very little about Dovi's early childhood-how he was diagnosed, etc. etc.

So I figure why not.

Dovi was born at 36 weeks gestation. I was induced because he wasn't moving around as much as he should have (decreased fetal movement), and because I was having small contractions and with every contraction his heart beat dipped.

I still remember what my Ob/Gyn said to me before she sent me home to get my bag and meet Benjie: "I just think he'll be safer outside of you than inside you."

So I went home to pack my stuff pick up my stuff and meet Benjie. We left for the hospital with a quick stop at Baskin Robbins for a Cappuccino Blast. Something funny-they were new in 1997 and a big thing. So we got one. The pink plastic spoon from that Cappuccino Blast is still in my dairy silverware drawer, 11 years later. Well the bottom of it-the spoon part got lost in a move. But that pink plastic handle isn't going ANYWHERE :)

After a fairly uneventful labor I had a fairly uneventful birth. Dovi was born at 7:31am on Thursday, November 13, 1997, weighing 5 pounds 1/2 ounce. After what I thought was a fairly uneventful 24 hours in the hospital I chose to go home in time for Shabbos.

I was 20. Benjie was 20. This was our first baby.

I thought it was normal that he didn't really nurse well-babies need to learn, right?

I thought that it was normal for babies to be like limp little rag dolls.

I didn't know how many wet diapers he needed.

I didn't know babies aren't supposed to sleep 22 hours a day.

Remember, why on earth would I have thought to look for something to be wrong? After all, everyone has healthy babies, right?

Not right.

Since I left the hospital at 24 hours post partum, a home health nurse came on Saturday to check on him. She was not pleased. He hadn't really eaten well, and he wasn't having enough wet diapers. She also said he looked a little jaundiced. She recommended that we try and give him some bottles (it's easier to give a bottle-you can see what they've eaten), and take him to the pediatrician on Monday to check on the jaundice.

I still remember what my pediatrician said on Monday morning:

"I don't particularly care about his jaundice. I care about his muscle tone"

And thus it began.

At a time when most mothers are staying home cuddling their new baby, Benjie and I were taking Dovi to the neurologist. Who was not happy either.

The first thing he did was admit us to the hospital. The thought process being that he needed tons of tests-and it would be easier to just do them all inpatient. I still remember a few things. Dovi wore a bright green (this was 1997) thermal one piece outfit with Tigger on the front. The room had pastel colors. There was a mother pulling her 1 year old daughter in a wagon down the hall as we were being admitted. She had no hair.

They did tests. Lactation consultants came.

"Don't worry, he'll learn. He was early. The suck/swallow reflex doesn't always come in until 37/38 weeks. All babies learn how to eat. Just be patient."

So we were patient. Somehow Dovi choked down enough to survive.

After tons and tons of tests over a few days, we were sent home.

The hypothesis was that he had some type of metabolic issue that could hopefully be treated with medication. But the blood had to be sent to Denver. And would take a few weeks to be cultured. So we were sent home.

We waited.


We saw the neurologist again. Lucky for us, he had done some residency at NYU, and had heard of this obscure Jewish genetic disease called Familial Dysautonomia or some such thing. Which had no test because the gene had not been found. But he didn't think Dovi had it. But he wanted to keep it on the back burner in case the metabolic idea didn't pan out.

We went for weight checks.

Dovi was not gaining.

His bris got pushed off. Not because he was jaundiced (which he was and needed bililights, the first of many medical equipment deliveries that came to our home) but because he was not 5 pounds. He was born at 5 pounds 1/2 an ounce and it took him almost 2 weeks to get back up to 5 pounds.

The day after his bris, it was decided that he needed an NG tube, a feeding tube threaded from his nose, down this throat, into his stomach. It was temporary-"until his suck/swallow came in". It was the night before Thanksgiving. A home health nurse came to our house, placed the NG tube, showed us how to use it, and left us to our own devices. 99% of people are admitted to the hospital when getting an NG tube. To this day I have not a clue why on earth we were not.

Benjie and I debated if we should take Dovi out to the planned family dinner in a restaurant for Thanksgiving with the NG tube. What if someone sees him?

We took him.

More tomorrow.