When I was in college, there was a support group called "special survivors". It was for those of us who had lost parents. We would meet in one of the members' dorm rooms every few weeks and just get together and talk about our lives, how we were coping, how the death of a parent had impacted us. There were those of us who had recently lost a parent, and others who were further along in their journey through grief. And, while I attended only a few meetings, I definitely appreciated the support and comfort of knowing that I was not alone.
At this point in my life, there is another layer of meaning behind the title "special survivors". It no longer refers to me alone, but rather to my husband, and to my children. My son is a survivor, in the very literal sense of the word. He survived an extremely traumatic early birth. His twin sister did not. My twins. Zoey and Max, were born on November 10, 2003 at 2:30 and 2:31 pm respectively via emergency c-section. I was only 26 weeks pregnant and had been in the hospital on bedrest and tocolytics (to stop contractions) for 3 weeks due to signs of preterm labor ( I didn't even realize I was dilated). At exactly 26 weeks, my son's placenta abrupted and within an hour of the abruption, the babies were delivered. I had to be intubated and put under general anasthesia because the epidural was not working fast enough. My husband was by my side the entire time, describing everything that was happening. My daughter, Zoey, was delivered first and she let out a tiny cry. She was rushed over to one of two neonatal teams. My husband was able to see her for a moment before she was intubated due to respiratory distress (she wasn't able to breathe on her own). My son, Max, was born the very next minute, breech. He, too, required immediate intubation. Both babies were rushed to the NICU before I even woke up from the anasthesia.
I met my babies for the first time the day after they were born, a Tuesday morning. I remember being wheeled into the NICU and seeing these tiny little beings, completely exposed, completely vulnerable, attached to IVs and monitors, with tubes going down their throats. It was overwhelming. They were beautiful; but at the same time, it was so obvious that they were not supposed to be outside my body. We were told by the docs and nurses to expect an emotional roller coaster; that only time would tell. We were told that the first few days were critical, then the first few weeks. We heard it over and over again, this is an emotional roller coaster and we have to take it one day, one hour, at a time.
The next morning, when my husband and I went to visit the babies, the neonatologist approached us and gave us the news that Max had a grade 3 IVH (a brain bleed). Brain bleeds are graded on a scale of 1 to 4, with 4 being the most severe. My daughter had a grade 2. The doc told us he was sorry to have to give us such bad news. The next morning, a second cranial ultrasound revealed the Max's IVH had progressed to a grade 4 on the left side, and again the doc said he was sorry. As I write this, I am reliving some of the emotions of that moment. Here we had two precious babies in critical condition; but we were told that my daughter was doing okay while my son was fighting to survive. In fact, his very survival was questionable. During those first two weeks, we were told to prepare ourselves for the possibility that Max would not survive. He did!
Over the next several weeks, both babies underwent surgeries, blood transfusions and numerous blood tests. (My son still has scars from all those pokes and IVs.) Both babies 'stabilized'; but remained critical. My son's brain bleed did not progress and he never required any intervention for the IVH. After a month or so, I asked one of the docs if she could give us some indication of wether or not we'd be able to bring the babies home. We were told that it was likely, provided neither baby suffered any severe infections. Within a few weeks of that pronouncement, both babies started to come down with infections. We were told "this is typical" because the immune systems of preemies, even full term newborns, is quite fragile and underdeveloped. Both babies had several rounds of antibiotics. At about six weeks, Zoey became syptomatic of an infection that had spread to her blood, her spinal fluid and, yes, her brain. My daughter, who was considered the stronger of the two, the one most likely to come home with us, was dying. She passed away on January 9th, 2004, 8 weeks, 4 days, 6 hours and 35 minutes after her birth.
Max remained in the NICU another 3 and a half months. He had two eye surgeries for ROP (retinopathy of prematurity) and stomach surgery for severe reflux (Nissen Fundoplication and G-tube placement). Our survivor was discharged on April 16, 2004 after 158 days in the NICU.
Fast forward to today. Max is a happy, inquisitive almost 3.5 year old. He relies on crawling as his primary mode of mobility and, until recently, employed sign language to communicate with us. He has recently started verbalizing more, a direct result, I believe, of the special ed preschool he attends where he receive OT, PT and Speech. While he still relies on a feeding tube, we are hopeful that he will eat by mouth one day. We are also hopeful that he will walk, but as with everything preemie related, time will tell.
So, as our story of survival continues to unfold, I am drawn to the possibility there are others with whom I can share the journey.