Blessed with tiny treasures: Carson and Kendall’s story
Written by Heather Shields
The day I was admitted to Winnie Palmer Hospital was one that I never expected. I was 20 weeks pregnant with twins, and I went into my Dr.’s office for a routine 20-week appointment. The exam was going great until my OB-GYN, Dr. Kyle Crofoot, discovered my cervix was already 3 cm dilated. Dr. Crofoot asked me to go straight to Winnie Palmer Hospital and said he’d meet me there. I thought they would evaluate me and probably send me home, but I was wrong. By the time I got to the triage department, I went into full-blown labor, and baby A’s (our son) amniotic sac was already funneling down the birth canal. In addition, they confirmed I was 3 cm dilated, and my cervix was thinning at an alarming rate. I couldn’t believe what I was hearing the doctors say. My diagnosis was heartbreaking: inevitable miscarriage.
Our doctors didn’t think we had any chance of having a live birth for either baby, and as a result the babies would never have a chance at making it to the NICU. Once Dr. Crofoot arrived at the hospital, though, he felt we had a small chance if the following occurred:
1). They could get my contractions under control.
2). I had surgery to stitch my cervix closed.
3). I remained in the hospital for the remainder of my pregnancy flat on my back.
As you can imagine, we were devastated to get this kind of information, but we knew we would do whatever it took to save our babies.
I laid in the hospital for the first 48 hours glued to the bed, terrified to move, hooked up to a catheter while being injected with heavy amounts of anti-contraction medications, hoping and praying I would be a candidate for the surgery. I knew without the surgery, we didn’t have any chance. The wait was agonizing. Several doctors tried to talk me out of the surgery because of the risks associated with it and the limited results the surgery would provide, in their point of view. I always believed in my heart from the moment I received the devastating news that I would do everything in my power to help save my twins. It had only been 3 weeks before all of this happened that I found out I was carrying a little boy and a little girl. I couldn’t believe this was happening to us. All I wanted to do was cry my eyes out, but I knew that would be the worst thing for our situation. Finally after 48 hours, we learned I would be a candidate for the surgery.
Following my surgery, I had trouble coming off of the oxygen and was having issues breathing. The surgery that gave us the best chance at saving our babies was now causing life-threatening issues for me. I was moved to the Intensive Care Unit and my husband was told to call in my family at 5 a.m. on a Saturday morning because of my life being in danger. They said they would do everything to save me, and without me the babies didn’t have any chance of surviving. It seemed like our situation was going from bad to worse. After 24 hours of being in the ICU, the doctors did another lung study and discovered my lungs were completely healed. Fortunately, I was only in the ICU unit for 24 hours before they moved me back to the antepartum floor.
The first month on the antepartum floor was the hardest given my diagnosis of “inevitable miscarriage.” If my babies arrived before I made it to 24 weeks, we knew that we wouldn’t be able to save them. Having this news hang over our heads felt like doomsday could be arriving at any moment. As hard as it was to be on drugs that made me feel loopy for months on end, being confined to a bed with this agonizing news weighing heavy on our hearts, I couldn’t help but smile every day Dr. Crofoot came to see me because it meant I was still in the hospital pregnant and it was one more day our babies had a chance to grow. I would set small goals for myself and once I reached those, I would set another small goal to strive for. The antepartum nurses and our friend, Giovanni, who was a respiratory therapist in the NICU, kept me going with stories of hope. Dr. Crofoot was also so encouraging, and I knew he was willing to try anything and everything to help us save my pregnancy and ultimately the babies. My family stood beside me 24 hours a day, 7 days a week. There was always a family member by my bedside, which was a great support for me.I spent a total of 47 days on the antepartum unit, which included Christmas. On January 31, 2009 we were finally forced to deliver when Baby A, our son’s water broke. Carson made his entrance into the world topping the charts at 1 lb. 15 oz., 13 ½ inches in length. Kendall made her entrance one minute later at 1 lb. 14oz, 13 ¾ inches in length. Life saving measures had to be provided immediately for both babies by the NICU nurses, respiratory therapists and Dr. Ana Albertini, the babies’ neonatologist. Their birth was not captured on film or video given our situation, but we were able to ask a lot of questions of Dr. Crofoot and the medical staff who were in the operating room that night.
I had never seen a 1 lb. micro preemie baby until I went to the NICU to see Kendall and Carson. It was quite shocking to say the least, but everything about them was beautiful - just very, very, very small. They were only slightly bigger than a 12-inch ruler. Their diapers were the size of a deck of cards. Their heads were the size of a small orange. My husband’s wedding ring could easily slide up their arms. I just remember thinking how in the world can babies this small survive and not have major medical issues. We knew the babies would be in the NICU for several months and since they were 1 lb. babies, there was always the chance they would not make it because they were so tiny and fragile.
Their weight dropped down to 22 ounces (1 lb. 6 ounces) and they struggled daily just to survive. They were so small they could wear doll clothes and they spent the first seven weeks of their lives on life support. We felt like we were thrown into this medical world in the NICU that we knew nothing about. We quickly learned the terminology, and leaned on our doctors, nurses and respiratory therapists to help guide us. I’d spend 16 hours a day or more sitting at their bedside watching, listening, talking and singing to the babies. My husband would join me for the night shift at the hospital where we would spend our evenings. When the babies got bigger, we’d spend our time holding them “kangaroo” style. Kangaroo care is where you hold your naked baby on your bare chest so they can hear your heartbeat, hear your voice, smell your skin and feel the warmth of your skin. It takes a team of nurses and respiratory therapists to make this happen when your baby is on life support, but it is the most amazing gift a mom or dad of a micro preemie can experience. We’d set small goals for the babies with the help of our medical team, and we’d grieve when things didn’t go as planned. We really grew to love the medical staff in the NICU and leaned on them so day in and day out.
When we got to the NICU we were told by the staff our stay would likely feel like a roller coaster and they were right! Our journey had lots of ups and downs. Kendall’s NICU journey was not as problematic as Carson’s, but it was still difficult. At 3 months of age when we were planning to take both twins home, Carson picked up a deadly infection, which turned into meningitis. We were given a grim prognosis, but by the grace of God, he pulled through, had surgery and was discharged 30 days after his sister. She ultimately spent three months in the NICU and he spent four months there.
Seven years later
Now, seven years later, Kendall & Carson have started 2nd Grade!!! It's so hard to believe!! When I think back about how far they have come, it's truly mind boggling. Back when we were in the NICU, I remember looking at my 1 pound babies wondering if they would live and if they did what their future would hold. At the beginning of our NICU journey, I prayed and prayed they would survive and have a normal life, but their extreme prematurity brought on a lot of worry over the years, especially when they were infants. We've tried our best to live in the moment and to avoid worrying, but sometimes it's easier said than done. I still find myself worrying, but my "worries" have certainly changed over the years and they are not the gut wrenching, life-ending worries I had while in the NICU.
Kendall and Carson both absolutely love learning and are doing incredibly well in school. Carson is a very advanced reader (just shy of 6th grade) and would spend all day reading if we would let him. He sees such beauty in the written word. He's always giving us quick facts and interesting details about things he's read or memorized. In his free time when he's not reading, he enjoys swimming, riding his bike, playing tennis, going to the playground, checking items off his bucket list, going to the amusement parks, and spending time with his friends. He's in OT this summer working on his fine motor and organizational skills. According to his OT, he has the perfect penmanship to be a doctor. Right now, he dreams of becoming a Surgeon or Scientist. His advice to the world is, "Never give up!"
Kendall loves reading and math, but her absolute favorite part of school is art. She sees such beauty in drawing, coloring, creating and imagining. She's quick to draw a picture and then write a story based on her artwork. In her free time, she loves going to Mathnasium, swimming, riding her bike, playing tennis, exploring new places, eating sushi and spending time with her friends. Kendall is in OT and Speech Therapy (receptive language) this summer to make sure she is staying on track with her developmental milestones. Kendall dreams of becoming a Veterinarian and taking care of all different kinds of animals. Her advice to the world is, "Pet as many puppies as you can!"
Although their need for therapy is very minimal at this point, we still get them evaluated once a year to make sure they are staying on track with their developmental milestones. We've also had both evaluated by a School Psychologist to make sure we are not missing the need for any services. I credit so much of where they are today to their hard work, but also to the amazing therapists, doctors and teachers who have helped us over the years. From our experience, early intervention services can make such a huge difference to the tiny babies.
When Kendall & Carson were in the NICU, I wished I could have had a glimpse into our life today. It would have brought me such peace and comfort. We hope by sharing their story that we may bring this peace and comfort to other families who have babies in the NICU or to those whose children may have already been discharged. Over the years, Kendall & Carson have been asked to make appearances and for us to share their story so we could give other families and medical professionals hope. This past year, Kendall & Carson spoke for the first time publicly in front of over 100 nurses at a conference. It was such a sweet moment because some of the nurses who had a hand in saving their lives were in the crowd.
As a family, we strongly believe in the need to give back to the hospital that changed our lives forever. I have served on the NICU Parent Advisory Council for the last 4 years. I regularly volunteer to help families in the NICU and those on bedrest on the antepartum floor. I also volunteer with the Breaking Bad News Program which trains Residents and Doctors on how to deliver challenging and difficult news to their patients and families.