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!
