Monday, July 18, 2011

In A World of Uncertainty, Boobs Are Certain

Welcome to the July Carnival of Breastfeeding! This month's theme is breastfeeding a baby with special needs. You can find more wonderful posts on this topic linked at the bottom of this one.

This month I'm pleased to share a post written by Theresia, on nursing her daughter who has Cerebral Palsy.

For many women, birth is a long, slow process. It may be painful. You may move and be moved in ways you never knew possible. For most in the end you are blessed with a perfect, healthy baby.

For me, birth was a medical emergency. A blur.

“Fetal distress.”


“Sign here.”

I did not give birth to my daughter, my daughter was delivered. 1:23am, 9/23/09; 36 weeks, 5 pounds 8oz, 18inches.
My husband asks me, “Why is she blue?”
The anesthesiologist asks me, “Would you like a sedative?”

“Hell yes.”

It is hours later. The transport team has come to take my daughter away to a hospital with a NICU. A nurse has come with a breastpump. This is not how it was meant to be.

Over the next few days, decisions are made. Over the phone my daughter’s doctors explain things to me that I never wanted to understand, that I can barely understand through the fog of painkillers, sedatives, and magnesium sulfate. Facing months of my baby in the hospital, I tell my nurse, the one who taught me how to use the pump, the one who talked to me about breastfeeding her own daughter, that I didn't care anymore.

“I don't want to pump. Let them give her formula. It doesn't matter.”
I cry. My nurse, a complete stranger, holds me, leans me back on the bed and reminds me: Only I can do this for my baby, who needs it more than most. She holds the flanges to my breasts for me, to pump my milk “just this one last time”. I do it myself next time.

After just five days things are starting to look up for my baby: no more cooling treatment, no more ventilation, no more sedation. By fourteen days old my daughter is home. By three weeks old I have stopped pumping, and she is breastfeeding. Everyone is surprised; everyone is impressed. She's perfect now.

Just kidding! I feel like life is laughing at me when I have to dig my pump out again, to calorie-fortify her breastmilk during the day. I relish her nighttime feedings and hate the bottles I mix and feed her. Our first diagnosis: GERD, age four months.
Two months later and I am able to put the pump away again. Thank God for the antacids that let her eat happily and gain weight, however slowly. But now we get a new “challenge”! She is not meeting her milestones, she's floppy, her eyes cross. Then come therapists, counselors, caseworkers. Doctors, doctors, doctors. Every poke, every prod, we nurse through it all. It gets mixed reviews from medical staff, but in a world of uncertainty boobs are certain.

My hardest times are those when I can't nurse her. She undergoes three procedures (one surgical, two diagnostic) when we can't nurse beforehand and my breasts ache with milk as I hold my crying, hungry baby in my arms. We endure one hospitalization when she is intubated and sedated and I can't even hold her. I can't make it better; I can only accept it or wait for it to be over.

“Nuh nuh” is always the first thing she wants in the morning; it's always the first thing she wants when she's waking up. It's always the first thing she wants in the hospital. I spend hours holding and nursing, watching endless episodes of Law & Order, and eating "complimentary" hospital meals that show up later on insurance invoices.
As we reach her first birthday she's functioning on a seven or eight month old level, I still have people who ask me, “Isn't she a little old for that?” I grin and bear it.

In twenty-one months we've nursed through therapies, illnesses, hospitalizations, surgical recovery, and more recently bumps, bruises, and tantrums. We've nursed through three blood draws, six diagnoses, and one divorce. I cried as I nursed her the first night she used her walker, and also the first night she walked on her own. Two July Fourths in a row I've watched her fall asleep at the breast as fireworks go off in the black sky above us. After much work and therapy, now she walks and jabbers and signs for “eat eat eat milk milk milk”. These days it's sometimes my greatest pleasure and sometimes (for the 1000th time today, with a wonky latch from a new tooth, and a recent penchant for twiddling) my greatest dread.

This experience with my daughter has changed me in a way I'm not sure anything else could have. Breastfeeding is an integral part of how we relate to each other. I used to joke that I breastfed “like it's my job” and now it is-- I'm a WIC breastfeeding peer counselor. I am the ear I never had, listening to moms who are going through where I've already been. I have a special place in my heart for NICU moms and moms of disabled kids. I always tell people about my daughter's disabilities, and about our struggles and successes with breastfeeding. It’s important and it’s part of me. She is part of me.
In some ways the two of us are very different from other mothers and their children. She works much harder than most other children to do the same things they do. I have a lot more doctors' numbers in my little black book, and doctors appointments in my day planner. Sometimes doctors mistake her for the sum of her diagnoses. Sometimes I feel more like her social worker than her mom. Sometimes people notice out loud how she’s “different” and other times people say I’m overstating her problems, and both make me sad. But when we are breastfeeding, none of those things matter. We are no different from anyone else. We are the same as every nursing pair, everywhere.

Theresia is the mother of Virginia ("Ginny"), a bright, outgoing toddler with cerebral palsy. They live in Maryland with Ginny's great-grandfather, three cats, and a dog. Ginny likes music, splashing in the pool, and playing “clean up”. Theresia works as a breastfeeding counselor for her local WIC clinic.

Don't miss these other wonderful posts from this month's contributors.

Jenny @ Chronicles of A Nursing Mom: Breastfeeding is the Only Way
Kelley @ Navagating: No one told me I couldn't
Kadiera @ Our Little Acorn: Eight Times A Day

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