The Preemie Primer Book by Jennifer Gunter

Having a premature baby is a crash course in both medicine and health economics. Parents face complex information, a daunting environment, difficult decisions, and overwhelming grief and worry. As an OB/GYN I have delivered hundreds of premature babies, but I really understand the heartbreak and challenges of prematurity because I am also the mother of triplet boys born extremely prematurely. Sadly, one of my sons died and my surviving boys were hospitalized for months.

 

What do you do when you have four filing cabinets full of research on prematurity, notebooks full of observations and therapies, the keen eye of an experienced physician, the inside scoop on the health care system, the experience of a mother who has been there, and breathing space now that your premature children have not been admitted to the hospital for 18 months and counting? The decision was easy: to share my unique insight into prematurity and provide a complete and practical resource for parents - a step-by-step guide through the premature baby experience from pregnancy through kindergarten and beyond.

 

The birth of a premature baby is like being dropped in a foreign country without a guide, a map, or language skills. The Preemie Primer: A Complete Guide for Parents of Premature Babies is the guidebook every family with a premature baby should own. It is the book I wished I could have read when my boys were born.

December 22nd, 2009

My hands don’t do what I want them to…

It had been a tough night. If you have a preemie, you know.

Oliver the imp

It started simply enough – a card received in the mail from a classmate, written in the large and apprehensive style of a kindergartner. My boys wanted to write a card back. Great idea.

I am always game for handwriting practice

The problem? Oliver’s wrists are weak and so he continues, despite much effort on everyone’s part, to hold the pen in a claw-like grasp, wrist flexed, with fingers clumsily folded over top. This is difficult to control. In addition, he can’t/won’t start the letters from top down.

When I try and correct him he yells, “I know.”

There are words between the two of us and a lot of tears.

At school he uses a little rubber guide to hold his fingers in the right spot. We have them at home. “Let’s get it out,” I suggest?

He doesn’t like it he tells me, and then the crying really starts. Huge tears, more precious than diamonds, well up and drip down his tiny cheeks. He doesn’t like the guide, he says, “It makes me scared.” After much discussion, and many “look at me, Sweethearts” on my part the truth is uncovered.

He knows he is different. He knows he uses the writing tool because his hands do not work the same way as other kids.

Many kindergartners have trouble with penmanship, that is not out of the ordinary, except this is Oliver’s second go round at kindergarten and he sees that the other kids are making progress and quite simply he is not.

My heart is breaking for him.

Physically Victor is more impaired. No one is quite sure how he manages to work those tight muscles, wracked with dystonia, but he does and how. What Victor lacks in physical ability he makes up for in tenacity. He has forced himself, practicing hours and hours until quite literally we have to drag him to bed. When I told Victor that writing at an easel would strengthen his wrist, every free minute he had was spent at that easel. Between bites of food he would run to the easel, work for a minute, and then run back to the table. Victor is a study in mind over matter, that inner strength is the trump card.

So after a long cuddle in which Oliver spoke the heart-breaking truth aloud was for the first time, “My hands don’t do what I want them to,” and both of our tears subsided, I told Oliver that I had terrible handwriting in school. Yes, the joke about doctors and handwriting can be inserted here. How I wasn’t allowed to have a big kid pencil, instead relegated to a horrible over-sized lead monstrosity that screamed poor penmanship until I was in grade 2. So I stole some pencils and lined paper from school and practiced every night. Oliver was equally entranced at the thought of his mom as a little girl and as a thief. Yes, I remind him, mommy was young once.

I told Oliver I had a plan. We would get out the easel. We would practice for 10 minutes every night. We would do legos because that also makes hands stronger.  We would write letters. We would do it together.

Oliver also takes a sewing class and due to what must be the patience of Job on his instructors part he has turned out beautiful little felt objects d’art and Christmas ornaments. “Maybe,” he said cautiously, “I could do sewing twice a week.”

“Of course,” I replied, although inside I was screaming YES, I’ll pay for you to do to sewing 7 days a week if you want!

Pushing your child is hard. There is no way around it. Sometimes I am riddled with doubt. Should I have backed off? Am I pushing too hard?

I don’t know. But I guess what I am really trying to impart is that the success is not in the end product, the success is in the doing and the trying. That when we fall we just have to pick ourselves up.

It just sucks that some of us fall more than others.

Oliver 9 20

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