Prematurity Awareness Day: My Story

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A typical pregnancy lasts for 40 weeks. A premature infant, or preemie, is one that is born before 37 weeks gestation. According to the Centers for Disease Control and Prevention (CDC), 1 in 9 babies (more than 450,000 infants) in the USA are born premature every year, and prematurity is the leading cause of infant deaths.1 The odds of an infant surviving a premature birth increase with each week it stays in the womb; a baby born at 23 weeks gestation has 17% chance of survival, but this increases to 39% just seven days later at 24 weeks gestation.2 Even so, “babies who survive often have lifelong health problems, including cerebral palsy, intellectual disabilities, chronic lung disease, blindness, and hearing loss.”3 Often times the cause of the premature birth is unknown.

November is Prematurity Awareness Month, and every year the March of Dimes spearheads World Prematurity Awareness Day (November 17). Parents of preemies are encouraged to share their stories. A premature birth is a harrowing experience, and happens upon many families unexpectedly. Afterwards, parents find themselves in shock, confused, and distressed. They can also feel quite alone, for a number of reasons. Many family and friends don’t know what to do, and don’t know what to say to the parents of a preemie. By sharing our stories, we can shed light on the life of a preemie parent, create awareness, and also let parents know that they are NOT alone.

The story of my preemie daughter began at 26 weeks, 5 days gestation. I was ordered on bed rest, due to 1) a nasty uterine polyp that wouldn’t stop bleeding and scaring me senseless; 2) a hospitalization for preterm contractions just one month prior; and 3) history of preterm loss (I delivered my son at 18 weeks gestation). My OB/GYN thought it best for me (and everyone that had to deal with me) if I just sat out the last trimester. Hopefully, on bed rest, my polyp wouldn’t bleed, I would be less stressed, and it would be smooth sailing to 40 weeks.

One week later, at 27 weeks, 5 days gestation, my water broke in the wee hours of the morning and I started having massive contractions. After a very crazy drive/ambulance ride to the hospital, the contractions thankfully stopped and I was immediately given a steroid injection to hasten the maturity of my daughter’s lungs (the nurse warned me it would be painful, and she wasn’t kidding). Next, we spent 20 minutes watching my daughter via ultrasound. We were looking for signs of swallowing or “breathing exercises” that a fetus does while in the womb to prepare its lungs for the real world. My daughter wasn’t doing them, which was a sign of fetal distress. The doctors made the call to get her out ASAP. Of course, this meant that the steroid shot I had been given was useless, as it takes days for the steroid to pass from mother to fetus.

So, my husband was scrubbed up and I was wheeled into the operating room for an emergency c-section. It took FOREVER for me to numb, but eventually I was ready to be sliced open. As small as she was, there was a bit of an issue getting my daughter out because she was jammed up on one side of my womb. I couldn’t see anything (not that I wanted to), but amid all the tugging and pulling on my body I suddenly heard the sound of a kitten meowing. This was my daughter, crying. I was amazed because I didn’t think that with her lungs so premature she would be to cry. I even had to ask the doctors, “Is that her crying?” I then heard one of the doctors announce her weight: 2 lbs, 1 oz. I was so relieved to hear the word “two” because I knew statistically that babies over 2 lbs typically had better outcomes. My daughter was so tiny at just 14.5 inches long. I never did see her right after birth, as she was immediately taken out of the operating room. As they wheeled her past me, because I was inverted on the operating table with my head lower than my legs, I couldn’t lift my head to see her – all I saw was a lump of towels. I had to ask my husband if she was really on that cart.

A little less than an hour later, hopped up on morphine, I was wheeled into the NICU to see my brand-new baby girl. There she was, lying out on a table under a heat lamp. One of the doctors would flick her foot to stimulate her when she forgot to breathe, which was often. She had been treated with surfactant for her lungs, and was diagnosed with apnea and jaundice but the doctors said her prognosis was good. Her heart valve was closed and a head ultrasound had detected no blood on the brain (these are two common issues with preemies). The doctors said that she was a relatively healthy preemie. She was soon transferred to an isolette (basically a heated plastic box, as preemies this young are unable to control their own body temperature), and she was put on a ventilator to control her breathing.

The only scare we had (besides the whole birth experience!) was when the biopsy of the placenta revealed that it was infected with bacteria (group B strep). This bacterium typically colonizes people and hangs out in the rectum and/or vagina, causing no problems as part of one’s normal flora, but for some reason it made a move into my womb. My daughter was almost certainly infected, and the big worry was that she would develop pneumonia or, if her spinal fluid was infected, meningitis.4 Therefore, she had a spinal tap and we waited three looooong days to see if the test came back positive (it didn’t). Antibiotics eventually cleared her system of the disease. For being a healthy preemie, the list of medical procedures my daughter had the first two months of her life was long: umbilical artery catheter, umbilical venous catheter, peripherally inserted central catheter line, peripheral intravenous line for blood transfusions (she had three), phototherapy, X-rays, ultrasounds, and periodic eye exams (to check for retinopathy of prematurity, a common disorder in preemies that can cause blindness).5

Stayin' alive in the isolette
Stayin’ alive in the isolette

My daughter spent 5 days on a ventilator before she was switched to the less-invasive CPAP (continuous positive airway pressure). It was then, 5 days after her birth, that I was able to hold her for the first time. After a few days on CPAP, her breathing improved to the point that she could use nasal cannula; it would be a month before she was breathing completely on her own. She was on caffeine to help her apnea, and while in the NICU her breathing was constantly monitored. Alarms would go off if her blood-oxygen levels dipped too much and she took too long to breathe. Those beeps and alarms were burned into my consciousness, and I remember almost falling into a panic attack the first day the doctors said my daughter was well enough to be monitor-free. But, as the doctors said, she continued to breathe just fine on her own, and (eventually) I was able to trust my baby to breathe.

At about 1 month old, weighing a hefty 3 lbs, my daughter began learning how to bottle-feed. Until this point she was fed through an IG tube (and her first tube feeding wasn’t until she was 5 days old, a measly 1 milliliter of milk). Also around this time she was keeping her own body temperature, so she was finally allowed to wear more than a diaper! I was SO EXCITED, and the attending nurse was too, to pick out that first outfit and dress her like a “real baby.” She graduated from the temperature- and oxygen-controlled isolette to an open crib at 6 weeks old. Not having to change her diaper, hold her hand, or talk to her through an arm hole in a plastic box was the BEST. However, it was also weird to have the wall that had been separating us for so long finally taken down. There was so much more room around her crib too, now that she no longer needed extra oxygen or IVs. Her only hurdle left was bottle-feeding, which took her an entire month to master.

I'm one month old and three whole pounds!
I’m one month old and three whole pounds!

On her two month birthday, at just 36 weeks gestational age, my daughter was discharged from the NICU. She weighed 5 lbs so she was still quite small at 17 inches long. She was oxygen- and monitor-free and able to bottle-feed like a champ. It was a surreal experience taking her outside for the first time when her whole life had been inside the hospital. My daughter was two months old, and I remember getting home with her and thinking, “Now what?” Since she was born, my life revolved around the hospital’s schedule, driving back and forth, staying by her side and staring at her through a plastic box. Now she was home… a two month old newborn.

I am happy to report that we figured it out (eventually). My daughter is now 6 years old, still tiny for her age, and wears glasses. Upon seeing her you’d probably not suspect her of having the start to life that she did. And that is why, every World Prematurity Day, I thank every the doctors, nurses, and staff whose hard work allowed me to take my beautiful baby girl home.

Six years old and ready to take over the world!
Six years old and ready to take over the world!

 

References/ Further Reading:

1. http://www.cdc.gov/reproductivehealth/maternalinfanthealth/pretermbirth.htm
2. http://miscarriage.about.com/od/pregnancyafterloss/a/prematurebirth.htm
3. http://www.marchofdimes.org/mission/march-of-dimes-prematurity-campaign.aspx
4. http://www.cdc.gov/groupbstrep/about/newborns-pregnant.html
5. https://www.nei.nih.gov/health/rop/rop

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