One Year Old

April and Sophia turned one year old on March 8th, and what a year we've had with them. I remember, during their long weeks in the NICU, once holding a friend's cute, chubby six month old baby outside of the NICU while my friend went to look at my tiny, struggling babies. One of my favorite NICU doctors walked by, and I said to him, "Here is a real baby!" I was attempting to make a lighthearted comment, but he caught the worry and discouragement in my voice, as he turned and came back just after entering the hallway. He leaned toward me, and with a kind, knowing grin and a reassuring tone, he commented, "Your babies will look like real babies before long too." Even a year later, that memory still brings tears to my eyes.



The seven weeks and two days that my babies spent in the hospital were difficult, discouraging, amazing, miraculous, and wonderful, all at the same time. I plan to record some of my experiences of that time in future blog entries. In brief summary, I had a fairly uneventful twin pregnancy until I was 28 weeks, 5 days along (about 6-1/2 months). On that day, I insisted that my doctor’s office see me because I had felt for a couple of weeks that something was amiss. Despite my premonitions, I was shocked to find that I had an advanced case of twin-to-twin transfusion syndrome (ttts). The perinatologist later told me that my babies would not have survived if I had waited four more days for my scheduled doctor appointment. After an ambulance ride to a bigger hospital an hour away, draining 3-1/2 liters of excess amniotic fluid, and six days of bedrest in the hospital, April and Sophia entered the world via c-section. April, tiny at 1 lb 14 oz, did not even require oxygen until she was several hours old. Sophia weighed in at 2 lbs, 8 oz, but has not fared quite as well as her sister.

When Sophia was one week old, we were told that she has suffered a bilateral grade 4 intraventricular hemorrhage, almost certainly before she was born and as a complication of the ttts. This meant that she had bleeding throughout her brain. She developed hydrocephalus, but was blessed in that it resolved without needing a shunt (which would have required a transfer to another hospital three hours away). By the time she had been home for a few months, however, it became obvious that her vision was not as it should be. She has cortical vision impairment (cvi­), and currently has very little usable vision. She has also been diagnosed with spastic dystonic quadriplegia cerebral palsy. These challenges are due to her brain bleed, which led to extensive periventricular leukamalacia (pvl), microcephaly, and severe cerebral atrophy. Much of this blog will be dedicated to my journey with Sophia.

Below is a picture of my beautiful, real babies on their first birthday.

I think that one child with special needs takes and gives enough emotionally, financially, physically, and otherwise to complete a family. However, we also have Sophia’s twin, April, and thus enjoy a bit of a unique twin dynamic. In addition, we have Audrey (3 this month), Jolie (6 last month), and Claire (9 in July). We love all of our daughters and are grateful that they are a part of our family. All of the past and future unexpected detours in our life will, we believe, lead through beautiful places, and we strive to enjoy the journey.