Letter to a Micropreemie Parent

I wrote this for the Love Letters project, a website that encourages people to write "love letters" to people who have faced a difficult experience.

Dear parent of a micropreemie,
Around 18 years ago, I was pregnant with my first child. Even though I was healthy at age 31, the pregnancy became complicated when I experienced frequent, massive hemorrhaging. I had to undergo ultrasounds and doctor visits to ensure all was okay. My doctor noted a problem with the placenta, but they couldn’t figure out what was causing all the bleeding. In August I took a business trip to Anchorage, Alaska, and I didn’t feel great while traveling. A week later, at 24 weeks gestation, I went into what-I-now-know-was premature labor. Because I’d experienced a lot of bleeding, back pain, and severe constipation, my husband and I thought that’s what it was. 

Chris not long after birth
I will spare you my entire birth story, but here’s the long story short: our son was born at just under 24 weeks gestation, weighing 1 pound, six ounces, and just 11 inches long.  Because he was born so suddenly, he didn’t have the advantage of prenatal steroids like some premature babies have. Consequently, his lungs were extremely immature and he was very sick. He had to stay in the NICU for 117 days and he endured many close-to-death crises, from serious chronic lung disease and dependency on the high-frequency ventilator, to three surgeries including a patent ductus arteriosus (heart) surgery, cerebral edema (brain swelling) and low flow the brain, and a severe infection when it seemed things were improving.

First few weeks of birth, with my fingers
Although our NICU experience is 18 years old, my advice for new micropreemie parents still applies:

1.      1.  Don’t blame yourself. While I was still in recovery from my general anesthetic (for the emergency c-section), a research nurse quizzed my husband about my medical history. Did I smoke? Drink? Use drugs? I know these are risk factors for prematurity, but I was healthy-to-the-extreme during my pregnancy. But no one deserves to have a premature baby, no matter their lifestyle choices.

I’ve had moments of blaming myself for not calling the doctor sooner when I went into premature labor. What would have happened if I had gone to the hospital right away? Could I have kept my baby inside longer? Would he have been healthier? Even today I sometimes wonder what he would have been like if he had not been born prematurely. In many cases, we don’t ever know what caused premature birth. Some women blame their bodies for failing them if they had an incompetent cervix, preeclampsia, placental abruption, or other things that went wrong. The bottom line is this: blaming yourself does no good, and I would advise doing everything you can to move forward and try not to blame yourself. Your baby needs you.

With my hand
2.       Love and treasure your child. Your experience of being a parent is not what you expected. You are not able to hold your baby whenever you want to. You have to ask permission to perform the smallest tasks. You feel helpless and are grieving. It’s not going to be an easy ride, no matter how long your baby is in the NICU. When our son was born, he was so sick that we were unable to hold him until he was six weeks old. After that, we had to take turns holding him…only once a day. Consequently, we had to find other ways to bond with him. We touched his head and feet…changed his diapers…talked to him and sang to him…prayed over him…developed our own NICU rituals. We read stories and sang songs on a cassette tape and asked the nurses to play it for him when we were not there.

When a 23-weeker of some friends became very sick, one of their nurses advised them to treasure each day. Even when all you can do is sit by your baby’s bedside, he or she knows you are there and feels your presence and your love.

3.      Develop positive relationships with your child’s nurses, doctors, and specialists. Nurses, in particular, are the lifeline of the NICU. We soon developed our favorites, and they asked to take care of Chris because they liked us. We developed such close relationships with the nurses that many of them came to Chris’ baptism, and we’re still in touch with many of them after all these years. We also had our favorite doctors and respiratory specialists…the ones who treated us with respect and involved us in decisions about Chris’ care.
4.       Cultivate support from others who have been through similar experiences. When Chris was born, he was the smallest, sickest baby in the NICU (the only 24-weeker there until a month later). It seemed that all the other babies were huge compared to him. Our nurses offered to set up a meeting with a couple whose daughter was nearing a year old…one who had gone through similar difficulties as Chris. We were too worried and consumed to make this a priority, but one day Marie & Andrew, with baby Maddy, stopped by the NICU. Talking to them and hearing their experiences, and watching baby Maddy chew on a paper cup, gave us so much hope. During our time in the NICU, we got to know several other families—providing and receiving support from them. And Maddy is now 18 years old and a delightful young woman—she’s my Facebook friend!

After leaving the NICU, we served on the hospital’s NICU Family Advisory Board with other parents. Some of them became our close friends, because we understood each other. Six years later, when I had my first miscarriage, we had plans to attend a holiday party with these other families. Even though I was in full grief mode, I decided to go to the party. As soon as I walked in the door, these amazing people embraced me and cried with me. Each one of them had experienced loss—infant loss, miscarriage, or the loss of the perfect birth experience. The support we received from other NICU parents was irreplaceable. They understood what we were going through like no one else could.

Holding Chris for the first time,
at one month old
5.       Advocate for your child (and for yourself). In 1996, we had very few Internet resources, but now they are limitless. You can read your baby’s medical chart (it’s your right!), learn about his or her medical condition, ask questions, try not to feel pushed into making quick decisions unless they are urgent, and seek answers anywhere you can find them.

In addition to reading your baby’s chart and keeping up with his or her progress, it’s your job to advocate for what’s best for your child. In the NICU it’s hard to feel like a parent when nurses and doctors are the ones taking care of your baby, but you are the consistent providers in your baby’s life and you know your baby better than anyone. Sometimes this will require great courage.

One day we arrived at the NICU to be told by Chris’ nurse excitedly that she had given him his first bath, even though she knew we would be arriving soon. How could she not realize that we would want to be part of this major milestone? The other nurses saw my anger and disappointment, so the next day they set up a bathing session so my husband and I could be fully involved. I wish I had the nerve at the time to tell that nurse how hurt I was by her lack of sensitivity.

At other times, doctors (mostly specialists) didn’t seem to care about our opinions or involving us in Chris’ care. Our favorite nurses constantly advocated for us and him—I remember one nurse commenting, “I want to deck that cardiologist!” When we were pushing to get Chris discharged before Christmas and around his due date, our pediatrician helped convince the neonatologist. Find your allies and use them as advocates!
Doing Kangaroo Care
     6.  Take care of yourself, mentally and physically. I know it’s hard, but this is important. Outside of your baby’s medical ups and downs (that roller coaster ride they tell you about), one of the most difficult things that can happen to an NICU parent is to get sick and not be able to visit their baby. So you must do everything you can to stay healthy. Develop a visiting routine, take daily naps, take breaks from the NICU, eat well, take walks or exercise, read or play music, indulge in activities that relieve your stress whenever you can. When your baby comes home, these will be more difficult. When Chris was in the NICU, we had tickets to a James Taylor concert we had bought several months before. Although we felt reluctant to go to the concert, our nurses strongly encouraged us to do so. Good advice. Nurses don’t just take care of the babies.

7.       Seek support from family and friends. Our close friends (NICU parents) have a saying: “Grief reorders your address book.” You will learn who you can count on and who will support you in the way you need support. Find people who do not bring drama into your life, who are sensitive and compassionate, and who try to understand what you are going through…and avoid spending time with the ones who don’t meet your emotional needs. We were fortunate to have mostly sensitive people around us who fed us and nurtured us through our crises. Let people know how they can help…for example, bringing meals and snacks, prayers and positive thoughts, child care assistance, and help with housework and errands.
Mike doing Kangaroo Care
8.       Involve your partner in your child’s care. Each parent can play a critical role in the NICU. Moms can pump breast milk until the baby is strong enough to breastfeed (which I strongly encourage you to do—breast milk is even better for preemies than for full-term babies!). While Mom is pumping, her partner can stay
at the baby’s bedside. When babies are born full term, Mom is usually the primary caregiver, especially in the early weeks. In the NICU, the playing field is leveled…both of you can have an equal stake in your baby’s care. Take advantage of this.
9.       Celebrate every milestone. I advise you to write everything down, because trust me…you will forget! One of the best gifts we received was a journal, which we wrote in every day at Chris’ bedside. We wrote the journal to him, giving us hope that he would grow up one day to read it himself. (Nowadays you can keep a blog or use a website to write a journal.) We also created rituals to celebrate milestones. Each week I made a new sign for his isolette, congratulating him on reaching another week. And we bought a mylar balloon to add to his balloon bouquet every Sunday. The nurses joked that he was going to float away. These celebrations helped us tremendously as the days and weeks added up.
Holding Chris while he was
still on a high-frequency ventilator
10.   Don’t forget hope. Statistics are just statistics…they do not predict how your baby will do. When Chris was born,
a woman from our church (an NICU nurse) visited my hospital room and announced, on his second day of life, that “all the odds are against him!” I dissolved in tears and told her how much she’d upset me and I didn’t want to hear things like that. After she left, I asked my nurse to write a sign that said “Think positive thoughts” and post it on my door. I didn’t need to be reminded of the odds—they were staring me in the face (50% chance of survival and 50% chance of major disabilities). I was determined not to give up on my baby unless I had to.

While Chris was in the NICU, he faced serious problems and almost died at least three times. I created an image in my mind, that of him running along the beach as a healthy toddler, and every time I succumbed to tears of hopelessness, I tried as hard as I could to cling to that image.

Sometimes in the NICU, hope is all you have to keep going. Don’t let anyone take your hope away.

Update on Chris: He is now 17 years old, a music-and-theater-loving, drum-playing, sweet, affectionate, bright and funny, and academically focused young man. He wears glasses, has a slim frame, had epilepsy when he was younger, and has attention-deficit disorder, but otherwise most people would never guess he had such a difficult start in life. He loves life and is doing great!