A Crunchy Mama Finds Her Way in the NICU

By Lorrie Leigh

baby in the NICUEight years ago my first hospital born set of twins taught me everything about how I want to give birth. So, naturally, I had a homebirth the next time around. Over several years, I also became a childbirth teacher, birth and breastfeeding political activist, and apprenticed midwife’s assistant with lots of experience under my belt.

Twenty-eight weeks into my third pregnancy, a preterm labor episode led to the discovery that another set of twins was in our future. My midwife and I stopped labor a la Spiritual Midwifery (vodka shots) and I set about staying in bed, consuming lots of protein to try to assure good birth weights, while trying to get to term. However, on June 29th at 31 and one-half weeks gestation, I woke in the night to the familiar backache that let me know this time labor was not going to be stopped and that I was heading back to a hospital birth and a long NICU stay for our babies.

We walked in to the Emergency Department of a local Baltimore hospital with our midwife at eight centimeters dilated and ran smack into the chip-on-the-shoulder-about-home-birth nurse and puffed-up doctor scenario. Thankfully our first twin birth had taught both my husband and I how to say “We choose to…” and “We do not consent…” long enough and loud enough that the birth itself went as smoothly as could be expected in such circumstances.

Our baby Kalleigh literally fell onto the bed and cried, after the doctor released my waters, and the OB scrambled to hand her to the NICU team. My husband followed her to the NICU while I began to push Baby B, Leighanna. She came out blue and limp. The staff began a full resuscitation and she coded over and over. Personnel were streaming in and out of the room. My midwife and I were hearing whispers “cleft lip, cleft palate, webbing, polyhydramnios…” and I knew then our hearts were going to break. Our daughter Leighanna died in our arms three hours later from complications of a rare chromosomal abnormality. Kalleigh, her two pound ten ounce twin breathed on her own at birth requiring only a nasal cannula of forced room air for much of our stay, to save her strength for growing.

I was far more educated than most parents when they enter the NICU milieu. While on bed rest, I had reread everything in my childbirth library about prematurity. But in the NICU, I came up against a brick wall of fear, and hostility to anything not part of the usual protocols of that facility. To their credit, the neonatalogists accepted our high level of involvement. But, it is the nurses who make or break mama’s success with breastfeeding, caring for and bonding with their baby. They stole our precious firsts like first bath, first dressing in clothes, first feedings, etc.; and from day one, resisted our natural parenting style. On day four I came home from the hospital without either of my babies. The first thing my husband handed me was the latest issue of Mothering. In it was a quote from the Dalai Lama, that we “must develop courage corresponding the size of the difficulties.” It was exactly what we needed to hear given what we were facing. That and some favorite bible verses taped to Kalleigh’s isolette inspired and sustained our NICU vigil.

On day five she sucked at the tip of my nipple on and off for several minutes. The nurse was very unhappy with me. It was clear that during “report” the next nurse had been forewarned because I received a lecture not to put her to the breast or expect that she would nurse because “here all babies have to start on bottles.” I rearranged my life with the help of my tribe — friends, family, former clients, home school pals and the local AP group — who were caring for my other three children, so that I could be with Kalleigh 12-16 hours a day and fumbled for the best way to nurture my baby in a box.

During our two-month stay, we had no less than three full-team meetings and many smaller conversations with our team lead nurse about staff resistance. We continually insisted on complementary alternative techniques (Kangaroo Care, preemie massage, colorpuncture, Reiki healing…) that this conservative staff had never seriously tried or even heard of. We brought as much documentation from the scientific literature with us as we could and just kept repeating ourselves until it was written in her chart.

In the NICU my own instincts and observations of Kalleigh were often discounted. I started putting up little notes on her isolette. First, was a list of the signs of stress during Kangaroo Care to alleviate staff fears that I would unknowingly harm our baby. The next note was a set of rules for use of the pacifier. My rules were based on my reading of the scientific literature about pacifiers and preemies. I decided to consciously avoid “asking permission” to do things for my child. I would say, “I am going to …” and unless they could justify their opposition, I did. Eventually the nurses began to ask me “What is your plan for today?” I liked that it required them to acknowledge that I was ultimately in charge of her care.

Ten days after the birth I was kangarooing up to four hours a day and got her to suck on my little finger for 15 minutes. At one month in the NICU the lactation consultant dropped by during a kangaroo session and helped get Kalleigh latched on the breast. We got a few great sucking bursts and swallows. I felt such joy and pride for both of us! From then on I breastfed as often as she was alert and interested, avoiding negative, doubting interactions with staff by stealth nursing when no one was around.

The nights in the NICU were hardest when our nurse was not warm or conversational. The rules of the NICU were that only parents and grandparents were allowed in round the clock. My husband and mother had to be with my other children at night and I spent some very lonely, teary late nights at Kalleigh’s bedside wishing I had company. I was a grieving and scared mother in need of comfort and the NICU rules were unnecessarily hard on me.

My concern for the negative energy of the NICU led me to bring in Jane and Marilee, two Reiki healers, to work with Kalleigh. This caused much eye rolling with the staff, but I noted improvements after each Reiki session. I brought in Carolyn, a colorpuncture practitioner. Color puncture uses focused colored light on acupuncture points on the skin to energize healing impulses in all of us. I also felt that as an identical twin that had lost her sister, Kalleigh was experiencing the pain of her loss. Carolyn worked on physical issues, as well as emotional issues for both of us. We intuitively felt that appropriate healing touch was critical to bringing home a baby who was as little traumatized by her NICU stay as possible.

For my own emotional health I used an aromatherapy, homeopathy, and flower essences to stay balanced, and I sought the support of friends via regular email updates and text messaging from the NICU.

The last two weeks of my stay I was feeling that we should be preparing to go home. She wasn’t yet fully breastfeeding and there was intense pressure on me to achieve that first. The NICU staff was uncomfortable with our push to go home and the resulting hostility and stress affected my health as well. It got to the point where we considered a transfer to another hospital. The neonatologist, upset that we were so dissatisfied, arranged for us to instead move from NICU to the pediatrics unit and work with a new staff.

On the pediatric unit, I had a room to myself with the baby, a bed to rest in, a place to go to the bathroom, a private place to pump, and three free meals daily as the mother of a nursing patient. The staff pediatrician and I worked out a plan for taking Kalleigh home on an apnea monitor. After four days there, we were released when I proved capable of inserting a gastric tube as needed to supplement her nursing, handling the apnea monitor, giving CPR and handling her meds.

At home, Kalleigh began to nurse well so, I discontinued the gastric feedings after one week. Her appetite and nursing sessions increased dramatically. At eight months old she weighs over 13 pounds, and no longer needs the apnea monitor. She’s been exclusively breastfeeding and is now beginning solids. Any remaining issues are handled homeopathically. Remarkably#&8212;or perhaps not considering our intense efforts on her behalf#&8212;she is not showing developmental delays typical of the very low birth weight baby. Kalleigh’s middle name is Blessing, and so she is to our family.

While we were in the NICU there was a lot of media coverage of a New York Times article about the pressure to improve the NICU environment and intellectual and psychological outcomes for preemies. Progressive NICUs are already creating a nurturing environment around the baby and the parents with a peaceful atmosphere, Kangaroo Care, breastfeeding and responsive, rather than schedule-driven care. My tenacious bedside care for Kalleigh was driven by my desire for her to be as healthy physically, mentally, psychologically and spiritually as she could be.

Before discharge, our neonatalogist asked me to be sure I filled out the NICU satisfaction survey to help her secure funding to make improvements to the unit. Most of what is needed, however, doesn’t cost a dime. Creating a positive energy that believes in and trusts in the mother-baby bond and the power of the act of nursing at the breast (not just of the breast milk and its components), and holding skin-to-skin, can heal fragile babies. What Kalleigh needed most was breastfeeding, Mama and Daddy’s healing touch, and her mama’s intuitive awareness of and attention to her emotional needs. If more NICUs attend to the physical needs with consideration for the psychological and emotional connection of the mother and baby, I believe we will see more babies surprise us with their progress.

 

Originally published August 13, 2006

Lorrie Leigh is a mother of four living children, married to Walter Chappel, teaches natural childbirth and when not home with a nursling continues her midwifery apprenticeship and breastfeeding activism.