Having three premature babies changes your life.
Our story began in January of 2007 when my husband and I learned we were expecting our first child! At the initial 8-week check-up we saw our baby’s heart beat for the first time, and were given a due date of September 8th, my husband’s birthday! Unfortunately at 13 weeks, we lost the babies. We were completely devastated and left with many questions.
In late May, we learned we were expecting again. This time all was looking great until a routine 30-week exam when I was diagnosed with preterm labor, though I had no known risk factors. I was given terbutaline to stop the labor and was admitted to the hospital for a week then sent home on bedrest. At 34 weeks I was taken off of terbutaline due to high blood pressure and went into the hospital experiencing contractions when my water broke. Our first son joined us six weeks too soon. Lucas was born weighing 5 pounds 15 ounces and 18.5 inches. He was immediately sent to the NICU and put on oxygen. He remained in the NICU for 12 days due to jaundice, and weight loss from being too weak to eat well. It seemed like the longest 12 days imaginable.
In early 2009 we became pregnant again! I began experiencing preterm labor at 27 weeks this time. I had been told to expect possible preterm labor again, even earlier each time, but I still had no other risk factors. Again I was put on bedrest at home and given terbutaline to control the contractions and progesterone shots to prevent labor. At exactly 36 weeks I was taken off of medications. While getting ready to leave home for the hospital my water broke and I ended up having an emergency home birth. Our baby boy was having trouble breathing and immediately taken to the hospital by ambulance minutes after his birth. I had some complications with the birth, requiring a blood transfusion and extra days in the hospital. Zachary weighed a healthy 6 pounds 9 ounces and was 19 inches long. He also experienced jaundice but despite being a month early was a strong baby.
In July of 2013 we became pregnant again! We knew the baby would likely be a little early but nothing could have prepared us for the long road ahead. At 17 weeks I was rushed to the hospital with heavy bleeding and we thought we were losing our baby girl. An ultrasound showed the baby was still okay but I was placed on bedrest and sent to maternal fetal specialists. That began eight and a half weeks of bedrest with ultrasounds every two or three days. At the 20 week scan it showed there was too much amniotic fluid and I was at risk of premature rupture of the amniotic sac. At 23 weeks I had a risky procedure to drain the excess fluid. However, it began to build back up within days. The baby was tentatively diagnosed with a TEF (tracheoesophageal fistula) and I was sent for a fetal MRI. The MRI was done on Christmas Eve 2013 and while unable to confirm a TEF they discovered possible cysts in the baby’s brain (confirmed to be white matter damage by MRI at 18 months old). Early Christmas morning my water broke. We went straight to the INOVA Loudoun hospital, who immediately transferred me by ambulance to INOVA Children’s Hospital. Sarah Paige entered the world by an emergency C-section on Christmas Day weighing just 1 pound 9 ounces and barely 12 inches long. Nothing can prepare you for seeing a micro-preemie that tiny.
This began our very long 126-day stay in the NICU, filled with many, many ups and downs. We live an hour from INOVA Fairfax Children’s Hospital and had to juggle our time with Sarah in the NICU and our time home taking care of our two boys. Early in her stay Sarah was treated with surfactant to help her immature lungs. Even so Sarah spent the majority of her days on a ventilator as the doctors tried very hard to heal her very sick lungs. At one point her primary physician Dr. North told us gently but directly that she was the sickest baby in the NICU and without some very specialized medicine and procedures she would not make it through the night. That was the hardest night of her stay, but it was still many weeks before she went home. We once asked what it costs to care for a baby like Sarah, and were told it would approach one million dollars.
The doctors and nurses gave her great care, but we were still happy to leave! If Sarah hadn’t been treated at INOVA Children’s Hospital, she probably would not be here, and our family would be emptier without her.
While at INOVA Fairfax, we got to know Sara Donohue, the Family Support Specialist in the NICU. She was a very positive face at times when we most needed encouragement. She still is. While there Sara invited me to go to the Mother’s Tea for support. Sara made a small sign for my daughter’s crib at the NICU “Mommy has my vote” (while I was running for reelection for Town Council.) Her encouragement made a real difference.On April 29th, 2014 Sarah Paige came home, and although still in need of oxygen and apnea monitors, she completed our family. The struggle of life with a preemie does not end when they leave the hospital.
Sarah has follow-ups with her pulmonologist Dr. Clayton, who has treated her since she was in the NICU… but also with her cardiologist, opthalmologist, GI doctor, neurologist, neurodevelopmental doctor, two speech therapists, two physical therapists, hippotherapist (horse), an occupational therapist, and her outstanding pediatrician. She required surgery to close a whole in her heart at eighteen months, leaving another untreated until later. Most recently she was diagnosed with epilepsy, but it’s been a struggle to find effective treatments and balance her quality of life. She has been fitted for orthotics, a special suit that will support her core, and a special stroller that will better support her. Needless to say, keeping up with her medical schedule is nearly a full-time job in itself.
Sarah has significant developmental delays. She has some words and knows her letters and numbers, but cannot put two words together into phrases. She is strong and likes to climb, but is not able to walk without assistance and is always a fall risk. She has difficulty sleeping, especially with medication changes. She has a lot of frustration because it is so hard for Sarah to communicate what she wants or to do things for herself. She is very loving of family, but does not like hospitals, crowds, or loud noises and bright lights. We will likely see the effects of her prematurity for her entire life.
Lucas is now 9, Zachary is now 7, and Sarah is 3 and a half. We have adjusted to our new normal, this is our life. Some days our children thrive, and other days we all struggle to find peace.Parents always say they just want their children to be happy and healthy. We just want our kids to be happy, and as healthy as they can be.
In 2015 when Sarah was healthy enough, we decided to walk in the March for Babies, and formed the Lovettsville Little Wonders, after the song by Rob Thomas Little Wonders which we sing to Sarah all the time. One line says “the hardest part is over”, but we still have a long road ahead. So we wanted to help others anyway we could. Our local team grew the past two years as we have met more families affected by prematurity, and since founding our team we have raised more than $10,000. We will continue to walk and raise awareness each year, as our lives were forever changed by our experiences.