When I was 34 weeks pregnant with Matthew, one last potential complication had to be addressed. Earlier in my pregnancy I’d had a Level 2 ultrasound done that revealed that Matthew had club feet and that his right kidney was located in his pelvis. It also indicated that there may be a problem with his umbilical cord. The doctors found a dilated vein in the cord, a possible life threatening issue for Matthew, in the later stages of my pregnancy. A blood clot can form in the dilated vein causing the sudden death of the baby. Because this news had been lumped in with everything else, and because it was an issue that wouldn’t even be addressed until the end of my pregnancy, it honestly didn’t phase me. Too many other things could go wrong long before the vein would be a problem, if it was to be a problem at all. As the weeks progressed in my pregnancy, however, my body was holding up amazingly well, and Matthew was thriving. Babies with Down syndrome are typically smaller in size, and Matthew was consistently 2 weeks behind the average baby until he suddenly had a little growth spurt and caught up by a week. He was also a very active baby, starting his day around 4 or 5 in the morning. I felt confident that I could take him to a full 40 weeks and I was pretty determined to do so. Experience with Isabella had opened my eyes to messing with nature.
Although I technically carried Isabella to term, my labor was induced when I was 38 weeks pregnant due to low amniotic fluid. When she was born, she didn’t cry because she wasn’t breathing. They laid her on my belly for a matter of seconds before whisking her away to resuscitate her. The nurses and doctor worked on her for 13 minutes. Her Apgar scores, the assessment the doctors use in the first few minutes of life to determine responsiveness, breathing, muscle activity, etc. were very low: 1‘s and 2‘s (on a scale of 1-10). She developed a hole in the sac of air around her heart, mostly likely due to the resuscitation, and had to be put on oxygen to help her breathe until the hole healed. The tubes and wires helping her breathe made nursing and bonding with her very difficult. She also developed jaundice. Isabella was in the hospital for 8 days, but for all intents and purposes, she was a healthy baby. As a newborn she was colicky and hard to settle. She developed acid reflux and had to be put on horrible medicine. She was a slow weight gainer, which caused an enormous amount of emotional stress for me. (There is nothing more fundamentally frustrating than feeling like you are unable to nourish your own baby.) Once as an infant and then again as a toddler, Isabella suffered febrile seizures due to fevers that spiked too high, too fast. Her pediatrician attributed the seizures to an immature nervous system. Although I will never know for sure, I have always wondered, had I been able to carry her even a week or two longer, could some of her early difficulties been minimized or even prevented?
Matthew’s diagnosis of Down syndrome automatically put him at risk for many serious medical problems at birth. 50-60% of babies born with Down syndrome have major heart defects, some requiring open heart surgery. Other birth defects involving the gastrointestinal tract can cause problems with eating and digesting food. They are more prone to epilepsy, sleep apnea, infections, and blood problems. Eyesight and hearing impairment are quite common. We knew only a few things about Matthew’s health during my pregnancy. An echo cardiogram showed that he had a good, strong heart (an absolutely bright spot of news!). His misplaced kidney seemed to be functioning. Once he was born, his feet would require several weeks of casting to correct their position, but seemed to be an easy fix. Many famous athletes, we learned, were born with club feet. No other structural defects were visible on the many ultrasounds I had. Although this was reassuring, there was still a lot of concern; many of the difficulties wouldn’t be known until after he was born.
Prematurity, on top of Down syndrome, is what really scared me. And if anyone was at risk of arriving prematurely, it was Matthew, because of me. Needless to say, I was doing everything the doctors advised me to do to prevent preterm labor. In addition to my check ups I was receiving weekly shots of progesterone in my hip. I was also called once a week by an RN who monitored any signs of early labor. And of course, I was modifying all my physical activities. So it came as a bit of a jolt when the perinatologist, the specialist who began monitoring the dilated vein in my 34th week, recommended that my labor needed to be induced right at term- 37 weeks- one week earlier than I had been induced with Isabella. The comfortable, confident place I’d settled into was once again turned on its head.
The dilated vein had grown considerably during the weeks of my pregnancy, but there was absolutely no evidence of a blood clot. From my 34th week on, I had to have one ultrasound and 2 NST’s (non-stress tests) each week to determine how Matthew was doing. Although I struggled with trusting my gut feelings throughout my pregnancy, I felt at this particular time, that Matthew was doing just fine. In fact, I really grappled with the medical advice we’d been given. Any and all medical intervention was ultimately up to us. We could do nothing, and risk Matthew’s life, or we could do something fairly aggressive, and risk his life, or the quality of it. What do we do? What was right? I dared myself to question the doctors’ decision, even though in the end, Mark and I both felt that we ought to trust their expertise. It was Matthew, however, who really made the decision for us.
During an NST in my 36th week, the RN monitoring Matthew picked up on a deceleration (“decel”), a dip in his heart rate during a contraction. Decels are not worrisome unless the heart rate dips too low. After observing a second deep decel during another strong contraction my doctor told me I’d earned a trip to the hospital. The decels were not necessarily connected with the dilated vein; it was more likely that Matthew had just rolled over on his umbilical cord, causing a temporary interruption of blood flow. My prediction was that I would go to the hospital, be observed for a few hours, Matthew would change positions, and I would be sent home. I didn’t even bother to pack my bag. Shortly after I arrived at the hospital, a third decel occurred, and suddenly my bedside was flooded with nurses ready to turn me over to force Matthew into a different position. It was then that I realized that my plans for Matthew’s arrival were irrelevant. I had to prepare myself. Although the third decel turned out to be the last one, the doctors agreed that given all the circumstances, Matthew’s Down syndrome, the dilated vein, and the occurrence of decels, it was time to induce my labor. I was 36 weeks and 3 days pregnant.
Hours later, and well into the middle of the night, that same night, Matthew’s heart rate remained stable, and he was showing absolutely no signs of stress. Once again, the questions about how much we should be intervening crept in. Could going home to give Matthew a few more weeks be an option? The doctor on call that night, Dr. Oliver, came to my room at 1 in the morning and talked with Mark and I at length about our concerns. It was an unexpectedly profound conversation and we felt afterward that he and the other doctors had made a very careful decision regarding Matthew’s well-being. Still, he conferred once again with 5 other doctors later that morning and returned to tell us that all felt that the decided course of action was the right one. We were so appreciative of the attention they were giving our situation. Mark and I finally felt peace of mind. I prayed one last prayer as a mother-to-be: that any deficiencies that Matthew might experience due to his early arrival might somehow be made up.
My labor progressed and I asked to have an epidural. By the time I was ready to push a few hours later, however, I can tell you with certainty that the medication had all but worn off. I felt the full extent of pain with each contraction-something I did not experience with Isabella. Oddly enough, I couldn’t feel myself push, so apparently the epidural was working in some capacity. The only push I felt was the very last one as Matthew finally left my body. The relief of pain was instantaneous and the feeling of accomplishment was exhilarating. But it was the sound of Matthew’s hearty cry, that filled me with an indescribable emotion. It was the sound I’d hoped to hear from Isabella at her birth, but didn’t. It was a sound, I was later told, that is not necessarily typical of a baby born with Down syndrome. Matthew Alexander Holsten was born on October 8, 2011 at 8:08 p.m.
I fell in love with Matthew the moment the doctor placed him on my belly. The bond I’d prayed for my whole pregnancy, and worried I might not be able to feel, came effortlessly. He was mine. I was able to hold and cuddle him for at least 20 minutes before the nurses took him to finish cleaning him up and take his measurements. Matthew’s Apgar scores had been 8‘s and 9‘s. He weighed 6 pds. 4 oz., and he was 18 inches in length. His club feet were minimal in severity at best.** He was plump, pink, and perfect. Absolute perfection.
A few nights later, as I visited the nursery to feed Matthew, Vinda, one of the nurses confided in me some things about the night Matthew was born that I hadn’t known. She said that all the specialized equipment had been warmed up and ready to go and that there was even extra staff on hand to assist with any complications. She told me that many of the nurses were praying for Matthew and said how relieved they felt when they learned that none of it, the equipment nor the extra hands, were needed. Once again, my heart was overcome- I mean, I thought it might just burst. Despite having Down syndrome and being premature, Matthew required no special medical attention-not even oxygen to help him breathe. (Did I mention that he was perfect?) But more importantly, he was valued. Matthew’s life was important. He had only been in the world a few days, and he already meant something wonderful to so many people.
{**Spoiler Alert: During our stay at the hospital Matthew was visited daily by a physical therapist who would stretch his foot muscles and who taught me how to make a soft brace out of velcro strips for him to wear to keep his foot muscles flexible. He was also visited by a team of 3 (young) podiatrists who diagnosed him as having a classic case of club feet. Soon after we left the hospital, however, he was seen by a pediatric podiatrist, who in less than 2 minutes of examination, determined that the curvature of his feet was due to positioning in my body, not an actual deformity. Matthew did not have club feet and therefore required no medical treatment.}
The Leprechauns came...
to make us breakfast.
A shamrock pancake for Isa
and some Lucky Charms. She quickly learned just how magically delicious they are--at least the marshmallow part.
After cleaning up the mess the leprechauns left, we went off to explore some puddles that were (finally!) created from all the rain.
And stopped in to visit the cow, of course.
Our own bit of Ireland...
with Canadian geese tourists.
St. Patty's Dinner at the Michie's.
Ally-BFF
Doing an Irish jig, which ended in collapsing on the floor, as I'm sure all Irish jigs do.
Good times.
