_I'm goin' home 2colorAs an adult, there are two times that I have cried absolutely uncontrollably – gasping for breath, pulling my hair. Fetal position. Wailing. Times when my heart literally could not contain the heartache.

The first time, Anna was three days old, in the NICU. I was tired, post partum hormones high. I had just pumped a paltry 30 ml of colostrum. When I brought it to the NICU to feed Anna, they informed me that I could not go in – shift change. I protested, knowing she would be hungry. The nurse who was responsible for Anna came out. She told me not to worry, because she had just given Anna 50 ml of formula. Anna didn’t need me right now. I was stunned. I had requested to be the one to feed Anna. I requested that she only get breast milk. It is not that I wouldn’t have agreed with these decisions … they just were not my decisions. I didn’t have control. My baby was sick … and I couldn’t help her.

After expressing my requests more firmly to the NICU team, I stumbled into the bathroom nearby and literally fell apart on the floor. There is something visceral, palpable, impenetrable about a mother’s love. It exists as a separate entity outside of the body. And when it is tested the entire body responds. I did not know – thankfully – how soon it would be tested again.

The second time was just 77 days later. The day we lost her. I wrote about the events of that day in detail but I don’t think I can ever relate the intensity of emotions I felt. When Anna’s cardiologist came to tell us that her heart had stopped I heard myself saying, “Nooo! Nooo! We need her back!” I saw my hands shaking. My body was responding biologically to a tremendous loss. I can type the words but it’s impossible to relate how lost within myself I was at that moment. I still do not know how Steve, who was right next to me, reacted. And that was before she was actually gone. At that point, we still had hope.

But it was not meant to be. All of our hope, all of our prayers, all of our love was not enough to save her. Her heart did not start again. When we said good bye and then left the room for the team to clean her up, I could barely walk. My legs were weak. My head was floating above my body. We made our way to the empty room next to Anna’s. I curled up in fetal position on the bench. My eyes clenched shut and my whole body cried. That was just the beginning of an emotional and physiological change in me from which I will never recover. That does not mean that I will not be ok. One day, I am sure I will be. But I will not recover. I will not be the same.

These two days, Sunday, May 10 (Mother’s Day, incidentally), and Sunday, July 26, are without a doubt the two worst days of my life. I needed to go into the depths of how those days felt in order to truly appreciate the precious gifts we were also given through this experience. In the midst of tragedy, there were moments of solace. And it is these moments that will save us.

When I got pregnant, I changed doctors so that I could deliver at Lawrence Hospital, the local hospital that had just cut the ribbon on a brand new maternity ward. The rooms were beautiful. After our tour, Steve commented that the NICU was not very sophisticated. I said, “What are the chances we’ll need the NICU, though?” So I stayed with the new practice. As my pregnancy progressed, I wasn’t very happy with the quality of care I was getting at the new practice, so after much consideration, I switched back to my old doctors and delivered at White Plains Hospital, where they have a level four NICU and an affiliation with Columbia.

Anna was born at White Plains Hospital on a Friday afternoon. On Saturday morning, when her heart murmur persisted, she was taken  for a sonogram of her heart. It just so happened that the pediatric cardiologist, Dr. Michael Snyder, was in the hospital that morning, and he decided to do the sonogram himself, rather than have the technician do it. That was a blessing. He immediately saw the gravity of the situation and correctly gave her a preliminary diagnosis of Noonan’s syndrome.

Delivering at White Plains and the lucky chance that Dr. Snyder was there and did the sonogram himself made all the difference in Anna’s early diagnosis and care. Blessings.

Eleven weeks later, when we took Anna to the pediatrician with a fever, she directed us to get a chest x-ray at the hospital. We had to decide between White Plains Hospital and Columbia Children’s Hospital. We chose Columbia. We decided to wait an hour, so I could feed Anna at home before she became stressed at the hospital. That was Steve’s idea. A good one, as it turned out. She was not dehydrated when she got the IV. The staff at Columbia’s emergency room was superb. She got excellent care and we understood what was happening every step of the way. I was able to hold her and sing to her the entire time. All blessings.

From the emergency room, Anna was admitted to the pediatric cardiac ICU. People bring their children from around the world to be treated there. Anna’s cardiologist, Dr. Snyder, was on rotation the whole time we were there (I believe he is only there one week a month). Having treated her since she was twelve hours old, he knew Anna’s entire medical history. Another blessing.

The staff on the cardiac PICU has immense respect for parents and an incredible combined amount of medical expertise. We do not have a single doubt about her care from the moment we set foot in the hospital. I truly, truly cannot imagine the agony we would be in if we did not have this sense of confidence.  An incredible blessing. And probably one that will save our marriage, our sanity … our faith.

Anna’s last night on earth was a good one. She nursed well. She slept soundly on my chest. I held her, Steve was right there. For those few last hours, we were good. An incredible gift. An incredible blessing.

Steve had gone home the morning of July 26 to spend some time with Nora and Henry. After he was gone, I felt things were getting worse, so I called my mom to come and keep Anna and me company. She got there in time to sing to Anna and hold her. Steve returned just as we left the room for the intubation. He called our pastor, Rev. Dr. Robert Hartwell, to come, but the call was unnecessary. Rob was already on his way, with our best friend Betty (Betty had been on her way to the hospital when she passed Rob on his bike. She stopped to tell him where she was going and he said, “I think I should go with you.” So he did.) Rob got there even before the hospital priest arrived from a few floors away. He baptized Anna in the name of the Father, the Son and the Holy Spirit while we watched through the window.

Without a doubt, God intended for those people to be with us during those darkest hours of our lives. My mother, my best friend (who is also a counselor) and our pastor. Later, our friend Grant (Betty’s husband) arrived, and our other minister, Deric. It was a circle of strength and love like I have never experienced. Anna was baptized and we had an amazing support system there. Blessings.

What would have happened if Anna had not gotten a urinary tract infection? We can only speculate. Probably we would have taken her in for her planned cardiology appointment the following week (July 28) and would have discovered then how quickly her heart was deteriorating. We would have scheduled her surgery as soon as possible. And then she either would not have made it to the surgery or she would not have survived it. Steve and I have discussed many times how excruciating it would have been if her decline had started at home. We would have spent the rest of our lives second-guessing our decisions – what hospital, what route, when to leave. But we don’t have to. A blessing.

I imagine guilt, doubt and blame as tiny drips of water seeping into a cold sidewalk – almost unnoticeable going in but when they freeze, the crack begins. And grows … and grows … until the sidewalk is no longer safely passable. I am immensely grateful to be free of those demons. Time will tell if this confidence holds but for now it is a tremendous comfort.

We are not ok. We are not better. But we are blessed.

One comment.

  1. Thank you for sharing these intimate details of how things happened. It means more than you may know. I feel blessed to be able to share in your grief in a small way.

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