Faces of Loss, Faces of Hope

Roxanne

Mom to Colin Thomas

July 30, 2010-August 7, 2010

Mansfield, PA

My fiancé and I were not planning to have children anytime soon when I found out I was pregnant. At the time, I didn’t know if I could conceive naturally, as I have PCOS. I am fairly sure we conceived our son on my birthday, February 1^st. In early March I was starting to feel nauseated for days at a time, and in my denial, thought I needed a diet change or something.

On April 1^st, the morning after we moved into our new apartment, I went to the doctor and found out I was 10 weeks pregnant. I was shocked. I didn’t think I wanted children yet. I was terrified. I spent weeks trying to accustom myself to the fact that I was going to be a parent much sooner than I had hoped. I had to keep trying on, if you will, the very image of me and my fiancé as parents.

Somewhere along the line, after getting a new job, checkups, planning, and picking out names, it slowly dawned on me, I was excited about being a mom. I was going to make sure that I was ready even if I was still scared. At about 20 weeks, we confirmed what I had suspected all along, we were having a little boy - Colin Thomas. I started to feel him kick me all the time. Actually, punches- we joked that I was giving birth to the incarnation of Chuck Norris.

My fiancé and I watched “The Lion King” in preparation for children’s movies and shows. We talked about parenting, gathered up used baby gear from friends and started a registry. I played music for Colin from my choir I sang in at college. Pieces of music that would inevitably tell the story of his short time with us.

As all moms do, I started swelling…more and more every few weeks. Until one day, I came home from work and I was swollen solid with fluid from toe to hip. I looked like I had gotten stung by a swarm of bees. I went to the doctor, and my blood pressure was elevated, so we did a 24-hour urine which came back with protein levels near 9,000. I was put on bedrest and we scheduled to see a high-risk OB that week. All along the way I thought to myself, alright, I’ll take this hurdle. I will stay on bedrest for the next 4 months if I have to, I’ll adjust however need be. My mom and mother in law came to take care of me. We could have never prepared for what was to come.

At the high-risk OB ultrasound we found that my blood pressure had shot up to 180/100 and that my placenta was not supplying enough blood to my little boy. On Friday, July 30, 2010, I checked into the hospital “for observation". Not an hour later, my blood pressure had again spiked to 208/110. I was given 4 doses of Labatelol in my IV with no changes. Colin’s heartbeat had slowed to 84 bpm- the nurses kept mistaking his heartbeat for mine. My body was killing him. Our OB came back and said that we needed an emergency c-section. I don’t think I even realized what was happening. I was hot and tired but I didn’t feel all that terrible. My mother, mother in law and just about every doctor and grief counselor I’ve talked to said that I could have died. I could have had a seizure, a heart attack, or a stroke at any moment. To this day I still believe I just needed to relax and take a nap. That Colin would still be with me and we would be fine.

Nonetheless, I was given magnesium sulfate and prepped for an emergency c-section. The perinatologist who would care for my son after his delivery said that at 24 weeks pregnancy he would do whatever he could for my little boy. Little did we know that my little boy’s eyes were still fused shut. When he was lifted out of me at 3:35 pm he weighed only 1lb 1.2 ounces, closer to 22 weeks. If the doctors had known this prior to delivery, I was told later, they might have done nothing at all, as the age of viability is 23 weeks. But the perinatologist kept to his word and fought for my baby’s life.

The next few days are a blur to me. I remember recouping from the c-section and having people congratulate me on the birth of my son, but I felt as though I knew early on that there was a great chance that he would not make it. We tried to do the impossible, hope for the best and prepare for the worst. My fiancé believed right off that bat that if there was a one percent chance that Colin could make it, he would make it. I did not know what to believe. I wanted to have hope for my baby, but I did not want him to suffer through years and years of pain.

The perinatologist told us that Colin was a very sick baby. His lungs were very premature. His right lung had Pulmonary Interstitial Emphysema due to prematurity and the left lung was totally collapsed and could not be re-inflated. We were told Colin would have chronic lung disease. The ventilator that was keeping him alive moment to moment would continue to damage his lungs over the months that he would need to be on it. Colin’s brain was already delayed due to low oxygen events and would most likely have Cerebral Palsy. We were told there was a 70-80 percent chance that our son would die. They asked what kind of “parameters” we were willing to set in terms of “interventions” we were comfortable with in Colin’s life. Did we want them to keep him alive at all and any cost, or use emergency medications and chest compressions to keep his heart beating? We agreed that we did not want him to be in pain, no matter what, so we asked for palliative care. We knew that if there was a brain bleed that he would most likely not be able to enjoy life as he grew. We agreed that if Colin’s numbers kept falling or he had a brain bleed that we would talk about “parameters” again. We hoped and prayed for the strength in Colin, and in ourselves, to fight for his life.

I got information on early intervention and signed up for additional Social Security benefits. Our parents talked about moving to help take care of what would most likely, as the doctors told us, a child with multiple special needs. I didn’t care, when I went into the NICU to visit him, all I saw was my little boy. My tiny, special little Colin. I did not realize until days later all the interventions that were keeping him alive- the ventilator, the oscillator, the Christmas tree of medicines hooked into his isolette. I walked around the NICU one afternoon and I saw all the other babies. I began realized how big they were and how many of them were not hooked up to many machines and I began to see how truly precarious Colin’s situation was.

Still we hoped. I played my music for him. My fiancé and I sat and talked to him about life and each other. We read to him. Ben read “Owl Moon” and I read “I Love You, Little One”. Some days I was numb with shock. Others I cried and cried. I pumped what little milk I expressed into tiny syringes to give to my son, which I did get to do once. I pushed a tiny syringe of milk into a tube which flowed into Colin’s tiny belly. I fed my son. I held him only once- I was so scared to touch him, but I reached my hands into the isolette and Colin’s nurse placed my tiny baby into the palm of my hands. I marveled at the amazing life that was before me. I held my son. Other times my fiancé and I got to “hold” him by hovering our hands close over his little body so that he could feel our presence. Our hope began to fail us as Colin’s blood pressure, oxygen saturation or heart rate continued to vary and fall. When they did, they Ambu-bagged him manually to bring his numbers back up. 6 days into his life, they Ambu-bagged him at least 5 times that day, our son was dying.

One week after my son’s birth, after a week of worrying from minute to minute whether he would live or die, we were approached again by the doctors. Our son, we were told, was not getting better. He was not showing signs of improvement and his numbers continued to fall. I am pretty sure I dissociated during that meeting- I understood everything that was being said but I felt like I did not exist. I cried tears that flowed from my eyes without control. My son was going to die. We agreed that we no longer felt that chest compressions or emergency medications were appropriate. In the realization of my grief, I almost felt relief- we did not have to feel the pain of worrying whether or not he would die. Now we had to prepare ourselves for the inevitable.

And yet, there was still hope…that afternoon, he remained somewhat stable. We even left the hospital to go to dinner; the second time I saw the light of day in a week. My fiancé and I yearned to go home and sleep a night in our own bed, take showers, and most importantly, feel like we still had a safe place of our own to go to. We knew that Colin might not make it through the night but we were exhausted. We spent the evening with Colin and said what goodbyes we could say. We read our stories to him, I played my music for him, we said the things we needed him to know, just in case…and we agreed to come back first thing in the morning to be with him. We had just gotten home, 45 minutes away, when we got the call around 12:30 am. “Come back the hospital,” Ben’s mother said to him, “but don’t rush because you won’t make it.” We drove back to the hospital in silence. Our son died in both of his grandmothers’ arms on August 7, 2010.

I went into shock when we got back to the hospital. I could not feel. Ben went into the NICU first. My legs were like lead as my mother and I walked towards the corner where Colin’s isolette was. I saw Ben rocking in a chair holding Colin, they put him in a tiny soft yellow knit outfit. I kneeled down next to Ben but could not look at Colin. Ben asked through gasps and tears if I wanted to hold him. I felt a splinter in my mind and I could not say words to refuse. I just started saying gibberish and ran out of the NICU. I don’t remember much of what happened for the next few hours, but we left the hospital early in the morning with a memory box and grief pamphlets and all drove to Ben’s parents’ house together. The moon was so bright that night- a crisp crescent, with the shadow behind it, and bright stars all around. So the urn we chose for him is a silver sleeping moon.

For a whole week, we got to see him kick and wave, saw his perfect little hands and feet, watched him hiccup. He had his father's feet and the way his eyes looked closed looked like his father's when he sleeps. Ben says Colin had my chin and cheeks. I have beautiful pictures, some of which I took when he was still living, some of which were taken after he passed. My favorite is him holding my finger, his tiny hand was the size of my fingertip. The people that my mom works with got a star named after Colin Thomas in the International Star Registry, in the Leo system (since he is a Leo, born on July 30).

He is our star in the sky, our little man in the moon, our Owl, our Lion. He is our first child and though I am still reeling from losing him I consider us blessed to have had him for the week that we did. We are the parents of a beautiful baby boy who taught us more in a week than I think we've learned in a lifetime. He changed everything and I am so grateful for it. He taught me to see wonder everywhere and in every thing. He taught me how precious and fragile our human existence is, that a beating heart is the timeclock against which our souls are borrowed.

I realized after Colin passed that I never got to take him outside, that he never felt fresh air, or even opened his eyes. When I told her this, my mother said to me, "But now, he can see everything."

You can contact Roxanne at heaneyrl@gmail.com