Our Story

“Congratulations, Kristen, you’re pregnant!” The words my husband and I had been waiting to hear for over two years finally were said. We’d tried on our own for a year, then, on my OBGYN’s recommendation, we visited a specialist to find out why my husband and I had had no luck in conceiving. Had we known what we would be in for over the next year and a half, some of the elation of being pregnant would have been taken away. After two years of unexplained infertility and subsequent testing and treatments, we underwent In Vitro Fertilization. In August of 2006, we became pregnant. Holding only a 23% chance that the two fertilized eggs would take, we held our breaths as we waited out the 11 days after transfer when I would undergo a blood test to test for hCG, human chorionic gonadotropin, the growth hormone that elevates when one becomes pregnant. When the test came back positive, we were elated. As subsequent tests showed my hCG levels rising at twice the normal rate, we began to wonder if both eggs had implanted. Six weeks into the pregnancy, I began to bleed. We rushed to UCONN for an early ultrasound and were amazed, relieved, and shocked to find that there was not one, but were two embryos alive and beating within me. I was placed on bed rest and followed doctors’ orders to the letter. Things settled down after two weeks and many injections of progesterone, a hormone I would be on for two months to try and maintain the pregnancy until my body began to produce enough of its own. I passed the next five months in an excited and nervous state; how would we handle not one, but two infants? We daydreamed about the twins and were equally as surprised when we found out at the 22 week ultrasound that I was carrying a boy and a girl. We thought things couldn’t be better and began planning in earnest for the arrival of the twins. Our mothers planned showers, and we registered for our wish list of baby items.

Just a mere two weeks later, I began to experience what I thought were Braxton-Hicks contractions, the “practice” contractions for actual labor. As an expectant mother of twins I was led to believe that I would experience pregnancy symptoms ahead of singleton moms and thought nothing of the premature contractions until February 2nd when the contractions became insistent and frequent. I left work, called the doctor, and was told to rest, drink lots of water, and call if anything changed. Hours later, my husband rushed me to the emergency room when I began bleeding and the contractions became regular. My OB-GYN met us at the emergency room, did an immediate cervical check and told us that I was two centimeters dilated and one of the twin’s amniotic sacs was protruding through my cervix. I was then placed on intravenous tolcolitics, a medicine that would attempt to calm the contractions, and rushed by ambulance to Yale-New Haven Hospital. As far as we were concerned these babies would not be born at 24 weeks! We were terrified of losing the babies. For a week, the staff and doctors of Yale-New Haven Hospital worked to keep me pregnant. The twins ‘heart rates remained steady and I settled in at Yale for the long haul – a mandatory eleven more weeks of bed rest in the trendelenburg position - a position where I was on my back and my feet were raised slightly higher than my head. A week after admission, I was awakened by the nurse on duty. They were sending me to labor and delivery, frighteningly enough, I was not feeling the contractions other than a persistent back ache which, I thought, was from my positioning. Panic set in when the doctor on call told me to call my husband, the babies would not wait. He made it with minutes to spare. At twenty five weeks gestation, Sarah was born blue and unresponsive at one pound eleven ounces, and Johnathan was born crying and pink at one pound fifteen ounces. We were surprised that he was able to make a sound! The twins are taken immediately to the NICU without being held by anyone but the doctors and without being seen by anybody but my husband and the doctors. I feel empty and scared. What followed were beautiful, terrifying weeks and months of care under the incredible staff of the Yale-New Haven Newborn Special Care Unit.

We are told that the babies need to survive the next twenty-four hours. Within hours, Sarah declines, she shows signs of infection. How could this be? She was inside me for the last 25 weeks. Johnathan holds steady. Over the next week, things changed again. Sarah began the slow and steady progress that would take her home with us fifteen weeks later, and Johnathan began to study the list of preemie problems possible. Four days after their emergency delivery, Johnathan’s angel of a nurse saw something she did not like and called for tests. He had necrotizing enterocolitis (NEC), an inflammation of the large and small intestine, and was rushed to surgery immediately upon our phone agreement. Five days after this emergency colostomy, Johnathan’s nurse asked if I wanted to hold him, (of course!!!) and we began the practice of “kangarooing” the twins. Both Sarah’s primary nurse and Johnathan’s primary nurse were huge advocates of this skin-to-skin holding of preemies. I held Sarah for the first time the next day while Adam held Johnathan. This was to be some of the best time we had in the NICU. We could be a family in some small part, hold the twins, love them gently, and watch as they responded to feedings and learned to breath on their own. Johnathan passed the next weeks fighting infection after infection. While Sarah slowly and steadily improved, feeding through an NG tube in small and increasing increments, and still using a ventilator, Johnathan fought for life and breath through a multitude of preemie complications - intracranial bleeds, pulmonary interstitial emphysema, meningitis, a patent ductus, fungal infections, urinary tract infections, and later retinopathy of prematurity due to the constant use of oxygen on tender lungs. Sarah slowly improved, she passed through weeks of apnea (forgetting to breathe due to an immature nervous system), and gradually was weaned with the help of corticosteroids from the ventilators onto CPAP, Nip-V, then low- flow oxygen. She had a few infections, a bout with what would be determined as cytomegalovirus (a virus that affects 40-80% of the population), but her biggest fight was weight. She gained at an amazingly slow rate, steady, but slow. Johnathan gained weight like a prizefighter. When things would get stressful, we would go to the NICU, kangaroo the twins, and stress would literally melt off of us. They were good times when we could kangaroo at the same time. At one point Sarah and Johnathan’s isolettes were right next to one another and we could hold and visit with the twins as a family. As the twins’ due date of May 23rd approached, we began to plan long term for the twins. It was looking like Sarah would be coming home soon, and after months of living with a colostomy bag, Johnathan would have his intestine reconnected. He came through the surgery well, swelled as expected, but soon after had a number of infections. In retrospect, we can see that this was to be a slow and steady decline for our little man. He was unable to come off the ventilator due to the lung damage from being on the ventilator for so long, and we agreed to a tracheotomy so that he would be able to develop the facial muscles he would need to eventually eat and speak. More infections. While we celebrated Sarah’s homecoming on May 23rd, the actual due date, we worried for Johnathan. Sarah came home on low-flow oxygen, a number of medications, and very specific instructions for a little five pounder. She was a blessing. We marveled every day at how wonderful it was to finally have one home. I stayed home on family leave, and Adam continued working. We split visits to the NICU; I would visit during daylight hours when Adam came home from work, and he would go down after I came home from Yale. Occasionally we could go together, one of us would sit in the solarium or family waiting room with Sarah and her tank of oxygen, while the other would visit Johnathan, or one of our parents would watch Sarah at home while we went together to Yale. Sometimes, even the nurses and interns would watch Sarah in the waiting room so we could visit together.

We passed two months like this. On July 22nd, we received a call in the evening that would be scarred in our memories forever. Johnathan was failing and failing fast. Symptoms of another infection had been found and he was requiring more and more oxygen. His kidneys were failing and his heart rate was low. As it was around nine in the evening we rushed - with Sarah - to Yale. The nurses, interns, and physicians assistants took care of her while we went to Johnathan’s bedside. Over the next two days, we would spend every waking hour in the NICU, be forced to go home to rest, shower, eat, something…by Sarah’s primary nurse and Johnathan’s. We would return hours later, sleepless and worried. The evening of the 25th proved to be the worst. We had come home for a nap and dinner break, and were barely home an hour when Johnathan’s night primary nurse called to tell us to come quick, she did not know how long he would make it. We made the 35 minute drive to Yale in 20 minutes. His oxygen saturation had been steadily declining since we left him and they had taken him from ventilator to oscillating ventilator, and his intravenous port had failed. At this point we were given a choice, take him off the ventilator and hold him until he passed, or continue to struggle with the task of oxygenating him and trying to force medications into his swollen and struggling body. We opted to hold him. If I never make another decision in my entire life, this will have been the toughest. We opted to hold our son while he died. NO parent should ever have to go through this. Johnathan passed peacefully within minutes of being removed from the ventilator. We had been part of the NICU so long that the staff was family. They were wonderful. They cried with us, allowed us to give him our first bath, and wrapped him up. We went home and collapsed. Sarah had been home with our parents that last night while we were with Johnathan at Yale. The next morning dawned early and to the sounds of Sarah crying to be fed. She was alive, hungry, and a blessing we had not expected.

Over the next weeks and months, we became used to just having Sarah around. There was a hole in our lives where Johnathan had been, and is still with us in spirit, but we got used to having just one baby at home. As the months passed we focused on our little miracle at home, watching her and helping her to respond to the world around her, rejoicing in small triumphs like rolling over and laughing, and eventually enjoying the growth in muscle development that would lead her to walk, talk, sing, dance, and just be a normal toddler. Today, Sarah continues to improve. She will be two on February 9th. She graduated from the need for oxygen last March, she is no longer on any medication, her eyes have improved and she no longer shows signs of retinopathy of prematurity. She no longer needs physical therapy, but does receive some speech therapy through Birth-to-Three Servicing. She is an average two year old. Our miracle one pound eleven ounce preemie is an average two year old!