Anna's Beautiful Life

Born May 8, 2009, at 2:55 p.m.

Died July 26, 2009, at 3:15 p.m.

Life with Anna has been amazing. She grew (she grew!) from cute little infant to cuter little bigger infant. She just barely passed the ten pound mark, and she wore it well on her 21-inch frame. She started smiling. Wow. Her smile could change your life. In the mornings she would hand them out for free, so we all made sure we were right there to get them. (It became a little crowded with the five of us in our bed, one smile-giver and four smile-getters.) Later in the day you had to work for them a little. And we worked for them because those smiles were worth acting like a fool.

Surprising to everyone, Anna grew into an excellent nurser – to the point that I was nervous she wouldn't take the bottle when I went back to work.

In recent weeks, her wide little eyes would lock on ours and I found myself thinking of her as an "old soul." I only realized this when I was holding her one day and she had fixed her intent blue-eyed stare on me. I thought to myself, "Oh, she's wondering if I'm ever going to sing 'Itsy Bitsy Spider' with her." It was as if the entire universe had already revealed itself to her and she was patiently waiting for us to get there too. We could live a million lifetimes in her sweet gaze.

In the past few weeks, her eyes would follow us around the room – as long as there was no ceiling fan within view. She became a big fan fan. It made us laugh out loud that, by the time she was nine weeks old, she could clearly communicate, "Excuse me, could you step to the side? You're blocking my view of Fan. And Fan and I are best friends."

In addition to those sweet smiles, Anna also started cooing. And if her smile could melt your heart, when she talked to you, you felt like the most important person in the world. You knew you were put right there, at that time, to hear those gentle ooo's and ahh's.

Anna packed a lot of living into her 80 days. She traveled to Jersey, Connecticut, and Long Island, took a boat ride, went to the pool and the beach, attended two parades, saw fireworks, tasted ice cream, went to the play ground and the park and the zoo, had a tag sale (that girl could sell sand in the desert), and ventured into the big city for a full day of meetings — of course we took the train and walked to the office like regular commuters.

Anna walked through our gardens and smelled our flowers as they bloomed and were planted. She witnessed our rainiest June and joined the whole family in bed for the biggest storm we've ever seen in Westchester. She saw her first movie (Up!) and made herself a local celebrity at the diner down the hill. She went to confirmation and birthday parties, was a regular at Costco, Home Depot and Ikea. She even enjoyed two pedicures with Mommy. She got bounced. A lot. Upstairs, downstairs, on the bed, on the couch, on the chair, at the office, at church, at the diner, outside, inside. She could always be comforted with just the right bounce: sitting up, one hand under her bottom and one behind her head, held out in front of you. A back-breaker for sure, but it always worked.

Because Steve and I have both been home these precious 80 days, we took lots of walks together, often with Nora and Henry in the stroller and Anna in the sling. We would walk down the hill, through town and around the park, always stopping to play Pooh Sticks at both bridges crossing the Bronx River. On the way home, Anna was the only one not forced to bail out for the trudge up the steepest hill in Westchester. (We live at the top of it. And if you live in Westchester and don't believe me, I invite you to start at Main Street and walk up Fairview Avenue and tell me how you feel when you get to our front door.) Nora and Henry earned a quarter for walking up under their own power. It was worth about $10 but they still think quarters — they work in gumball machines! — are the most valuable money you can get.

One day in Anna's short life, a turtle the size of a dinner plate came to visit. We found him walking across the back yard, presumably making his way to the door. We met him outside instead. And that was the day Anna learned about turtles. In our backyard. At the top of the steepest hill in Westchester. (I think he made the trip because he knew Anna might not otherwise get the chance to meet a turtle.)

Anna wanted to show us right away that she was smart, so we could stop worrying. We had been in the process of securing early intervention to deal with Anna's low muscle tone. At two months, she hadn't yet developed head control, so we worked on "tummy time" every day. Demonstrating her intelligence and ability to adapt, Anna went from crying during tummy time to playing for a few minutes, then turning her head to the side and going to sleep. That girl was laugh-out-loud funny. And she often made us laugh out loud. She made funny faces. And had loud gas! She wore her pants on her head! And played maracas! One day, when she was practicing her grip, she held onto Mr. Potato Head hands. Another time, she wore the biggest, frilliest tutu she could find and posed with two of Nora's teddy bears

It was amazing how quickly we became a family of five and forgot all about Life Before Anna. Nora and Henry continued to shower her with affection. Henry called her "gorgi" and Nora asked daily when Anna would get to sleep in her big crib in "the girls' room." They just always wanted to be wherever she was. Nora, for her part, really came into her own the past few weeks. In the beginning of the summer we thought we weren't going to last the ten weeks until September under her command, but since then she really settled into her now five-year-old self and became more patient, calm — and a big helper. She would run and get burp cloths and help Anna practice turning her head and tracking. Henry still resides in his own world and is just a bright happy light in our lives. He always wanted to hold Anna and kiss her.

I wish I could end this update here. Because this is really about the joy of Anna's life, not the end of it. I want this to be about the difference that she made to everyone who knew her, not about how much we'll miss her. But Anna's beautiful soul deserves a tribute to her passing as well. And so here are the events that are seared on our souls forever.

Steve took Anna to the pediatrician on Thursday morning after having a low-grade fever Wednesday that went up to 101.1 on Wednesday night. What we thought was going to be "give her Tylenol and come back if anything changes" turned into a trip to the pediatric emergency room at Columbia after a blood test in the pediatrician's office showed a white blood cell count of more than 40 thousand. In the ER, they found an infection in her urine, that later showed up in her blood as well. Anna was admitted to the cardiac pediatric ICU. It was a roller coaster ride while we were there, a demonstration of what a fighter Anna was. The whole time she ate well, and slept well, too, as long as she was in one of our arms. On Friday, the doctors thought she could move to a regular peds floor because she was doing so well and didn't look sick. Everyone in the hospital, like everyone else Anna met, fell in love with her. And commented on her intent, old-soul gaze.

Saturday night, Anna's respiratory rate was higher than it should have been, so we tried her on the CPAP again (the first time was in the ER and it did not go well). She hated it and fought to get it off her face for 20 minutes. She won. Steve and I convinced the doctors that we could calm her down enough to slow her breathing. And we did. We sang to her and I held her against my chest all night. We slept together in the hospital bed with Steve right beside us. Her respiratory rate was good, her pulse was good, her blood oxygen level was good. It was a good and peaceful night. Anna nursed well at six in the morning but afterward started "grunting" again. This was a sign that she was working hard to breathe. She nursed again at 10 a.m. and then, because she was still struggling, we put her back on the CPAP. Amazingly, she did not resist and she rested comfortably on it for about an hour. But even as she didn't resist and was sleeping, her oxygen level wasn't recovering. Her lips and tongue started looking white and she just wasn't herself. After rounds, at which Anna looked OK, they wanted a chest x-ray. And that started the rapid series of events that took Anna from us.

After the chest x-ray, which woke Anna up, she started resisting the CPAP again. That struggle took the little energy Anna had left. The amazing, competent charge nurse came in to do one thing and when she saw Anna, she stayed. She suctioned Anna's mouth and nose, and that helped her calm down a little. But still Anna was pale and her oxygen saturations were not recovering. Jeri, the charge nurse, got our cardiologist and the pediatric ICU senior resident to come back.

When they entered the room, they saw how much she had declined since they saw her 30 minutes before. The decision was quickly made to intubate. I held Anna's sweet, tired body while they got everything ready. She had not left my arms since the day before. But to intubate, we all had to leave the room. I kissed Anna good bye all over. And then we left. After 30 minutes, our cardiologist, the amazing Dr. Michael Snyder, came in to tell us that Anna's heart had stopped during intubation. They got a beat back but her heart wasn't sufficiently working to pump blood throughout her body. The team at Columbia worked on her for three hours, tirelessly, expertly and with the utmost compassion and respect. They kept her heart beating with compressions and kept breathing for her. Our pastor arrived to baptize her and welcome her into her Christian family. Everyone worked hard. Everyone prayed. Everyone cried. But we didn't get Anna back. Before she was gone, we were able to go in and say good bye, hold her hands and kiss her. We will never, ever forget those moments.

After she was gone, we bathed her, massaged her with lotion and wrapped her in her "bee." We held her for hours, remembering her life and trying to figure out what was next. How to breathe. How to stand. How to think and talk. We were surrounded by the family and friends who could get there in time, and were lifted by prayers and messages from those near and far. The funeral home came and got her at 7:15 p.m. Steve and I said good bye to her. Or, more accurately, we said, "We'll see you later." Because we believe that she is in the arms of our Heavenly Father. We believe that she was carried to heaven on the wings of an angel and placed in Jesus' arms. We picture her being rocked by her Great Grandma Maxine, and cooed over by Great Grandma Schell. Her great grandfathers are standing by, delighted that Anna is with them. We pray for solace.

When we got home, we cleaned up and waited for the kids to come back from our friends' house — one of the many who have made these last few days bearable. We sat on the couch with Nora and Henry and told them that Anna's heart wasn't strong enough and that she is home with Jesus. We said that we're happy for her, because Heaven is a beautiful and perfect place where Anna isn't sick any more. and that we're sad for us because we miss Anna and we'll always miss her. We said we have to try to make each other feel better by remembering Anna but that it's OK to feel sad. Nora cried — I think she knew something big was coming — and Henry sat solemnly for a few minutes before he looked at us with his sad eyes and said, "Mommy?" Pause. "May I please have a frozen thing from the freezer?" So we went to the kitchen and had popsicles and chocolate milk and talked about our happy memories of Anna. Nora and I decided that Anna is now our guardian angel.

I don't know what's next. We never, never expected this. We want her back. I want to hold her and nurse her. It is not right for parents to lose a child. We will never be the same. Because grief has changed us. Because Anna changed us. Our hearts are bigger ... and broken. But we have each other, and we have Nora and Henry. And we have all of you. We are going to be better people and live better lives because Anna made us better than we were before.

We don't know how any of this works but we're figuring it out moment by moment. How to breathe. How to stand. How to think and talk. Nora and Henry make it easier. And Steve and I are committed to each other and entwined in this heart break together. Even though I am writing the words, they are our shared thoughts.

God bless each of you.

Jenn, Steve, Nora, Henry & Anna

The Lord is my Shepherd; I shall not want.

He maketh me to lie down in green pastures:

He leadeth me beside the still waters.

He restoreth my soul:

He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,

I will fear no evil: For thou art with me;

Thy rod and thy staff, they comfort me.

Thou preparest a table before me in the presence of mine enemies;

Thou annointest my head with oil; My cup runneth over.