When your daughter is a reminder of miracles

Sometimes, my daughter is “just” my daughter — a freckle-faced mini-me whose temper and insistence on justice try my patience. Other times, she is an in the flesh miracle. A living, breathing testament to the fact that all life is a miracle. Each and every one of us.

At 38 weeks pregnant, I suddenly and violently realized that my baby wasn’t moving. That I could not, in fact, recall the last time she had. I called the doctor. I drank orange juice. I lay left on my side.

I pushed and shoved my stomach. Panic closed my throat as I waited for a reaction that never came.

I called my husband and told him I was going to the local hospital. (We were visiting my parents at the time.) He made a 40 minute drive in less than 20.

At the hospital I was put on a monitor. My own heartbeat raced as I waited for signs of hers from the machine. Each second was torture. When it came through, I sagged in relief. I’d never been so grateful to be wrong.

The nurse was not so relieved. She kept looking at the monitor, concern etched across her face. She said that the heart rate was too fast, so fast that the monitor was unable to read it properly.

She called in a doctor and an ultrasound machine. The doctor, a high risk OB, was only there that night for twins being born. As he looked at the screen, he was silent and pensive. I was panicked and nauseated. He said, “Your baby is very sick. It needs to come out now.”

I fired off questions as they prepped for emergency surgery. He told me things I didn’t really understand and when I begged him to at least tell me if the baby would live or be disabled, all he could say was that he didn’t know.

From there, it was like a movie. Me on a gurney being wheeled away from my husband. Lights above whizzing past. The doctor who had gone to prep himself, was suddenly there at my shoulder. I said, “Forgive me, but I don’t know you. Do you know what you’re doing?” I recall hearing Harvard, top of his class, and a few other reassuring phrases. They covered my face with a mask and told me to count backwards. I prayed until I was unconscious.

Once the baby was out, the doctor passed the purple, not-breathing bundle to the neonatologist. This specialty doctor was also only there that night because of those blessed twins who, it turned out, did not need either doctor, enabling them to be free to take care of us.

I woke up in pain, confused and reacting badly to the antibiotics, an enviable state compared to my poor husband who was frighteningly conscious the entire time. I saw the baby for a few moments once she was stabilized with tubes and IV’s. But she needed a more equipped hospital and so, left with my husband to Children’s Hospital of Philadelphia.

For three year-long-days, I was updated by my husband. They still didn’t know what was wrong and they were taking it one hour at a time as they worked to get her blood, electrolytes, and organs functioning properly.

I was finally allowed to leave the hospital and join them in Phili after three days. The staff at CHOP was “cautiously optimistic,” but still did not know what was wrong. It was at about this time that she began to have bouts of SVT- supraventricular tachycardia. Her entire body shook with an incredibly fast heart rate. Not knowing what caused it, or what would stop it, they observed, sometimes up to an hour as her heart beat up to 280 times a minute.

Her body didn’t seem able to stop on its own. Left untreated this would lead to edema, blood not getting to where it needed to be, and eventually to her body shutting down. They needed her rate to return to normal. To do this they used a medicine called Adenosine. Adenosine works by stopping the heart so that it can start again properly. It’s like a reset button, and it is terrifying to watch it being administered.

Though her stats improved steadily, she wasn’t awake.  We couldn’t hold her. I couldn’t feed her, she was all hooked up and they still did not know what was wrong… or how to fix it.

Friends prayed round the clock, we prayed round the clock. Since I was still in a wheelchair, the hospital was our home. Friends and family were incredible in their support, coming down, caring for our son, taking care of everything we had dropped to be there. Chai Lifeline brought us kosher food and an apartment which my husband and father in law used before I got to Phili.

When you are in the hospital with someone you love, you are in another dimension. There is life inside the hospital and there is life outside the hospital and when you are inside, you don’t exist outside.

Hours are days. Days are months. You check progress, look for positive signs. You hurt for other parents, you fall in love with other kids, and everything is immediately slammed into perspective.

Instantaneously and completely.

Nothing else matters.

The staff was rather in awe of this tiny little girl who, despite the extreme battering her body had taken, was fighting every day. It became clear that the problem was cardiac and we were moved to the CICU. After many bouts of SVT and reams of EKGs, she was diagnosed with WPW – a small extra electrical tissue that causes the heart to take a shortcut as it beats. It took them a few days to find a beta blocker that she couldn’t break through (in fact they had to create the liquid form for her from pills).

Three times a day, she needed this medication to keep her heart in check. Three nerve-wracking times a day for six years. During these years she had a few SVTs and we had to go to the hospital to break them. When she was big enough she had a procedure to remove this extra pathway. We held a Seudat Hodaya (a meal of thanks) in our new home in Israel.

Today she is a spitfire blue-belt in Tae Kwon Do olah who speaks a mean Hebrew and can hold her own with kids twice her size. Every year on her birthday my husband sends an email with updated pictures to all of the doctors and nurses who helped pull her through. Maybe some of them will join us for her Bat Mitzvah.

For years after we left CHOP, whenever something went wrong, big or small, we said, “It isn’t the NICU” and smiled. That is how we lived. That perspective, gained during our time in the hospital, lasted a long time and though we don’t always voice it aloud, it has entered our familial persona. Odds mean nothing to us. We are grateful for the little things, try not to get flustered by the big things and are mighty thankful for the things we do not have.

Sometimes today, when my daughter drives me nuts, I think of how silent she was that first week and how I yearned just to hear her cry.

Sometimes when her stubborn streak is enough to send me for buckets of chocolate, I thank God for that fighting spirit that I believe kept her alive.

Sometimes when I question my instincts, I recall that without them I would never have gone to the hospital that night.

Sometimes when I question the world, I remember the doctors who saved her life and how God made sure they were there just on that night, just when we needed them.

Our daughter was released on Tisha B’Av. Since then, the nine days have a very different feeling for me. They are days that give me back some perspective, some humility and some hope. Since then, Tisha B’Av is a mini redemption for our family.

Until Tisha B’Av is a day of redemption for all of us: May we all keep things in the right perspective and may we all treat one another like the miracles that we are.