The Newborn Identity

After hanging up the phone with the NICU I quickly showered, dressed, and hurried down to my car. I wanted to be strong that day for Maddie and Heather, but as I drove toward the hospital I found that very hard to do.

Typical of Los Angeles the road leading to the hospital was clogged with traffic, and as I sat in a sea of motionless cars I started to cry uncontrollably. This was very awkward, and from the corner of my eyes I could see the people in the cars to my left and right gawking at me.

I switched on my CD player in hopes of hearing a frivolous song that might help me pull things together, but what came on was anything but a fun diversion. It was “The Way,” a gentle song by Neil Young that features a children’s choir. Soon my car was filled with the angelic voices of children singing:

“The way, we know the way. We’ve seen the way
We’ll show the way
To get you back home
To the peace where you belong…”

As I listened to the children’s choir sing this refrain I imagined that they were the voices of all the babies who had ever died in the NICU, and that they were singing to Maddie that they could show her the way to peace - away from all the pain that she was in. This, as you can imagine, made me cry even more.

But then it occurred to me that maybe what I was hearing wasn’t the voice of the children who had died, but the children who had survived, and that they were singing to Maddie that they knew the way to health - the way for her to get back home with Heather and me. I clung to this second interpretation as traffic finally started to move.

When I walked into the NICU Maddie’s isolette was once again surrounded by doctors and nurses. Remembering Dr. Walker’s proximity test, I knew this wasn’t good. I looked to her blue number…it read only 44. The amount of oxygen in Maddie’s body was dangerously low. A nurse soon told me to go to the waiting room and that they would come give me an update when they had one.

In the waiting room I opened a book about babies that Heather had given me and saw that it had a chapter entitled: “Coping with Loss.” With a heavy heart I turned to that chapter and began to read.

After about fifteen minutes I got up and walked down to the NICU because I couldn’t wait for an update any longer. Once there I saw that even more doctors and nurses surrounded Maddie’s isolette, and that her blue number was now at an inconceivably low 11. I knew then that my daughter was going to die.

I turned and left to go call Heather. On my way to do so I ran into the cardiologist I hadn’t seen since the first night.

“I have good news,” he said. “That serious heart problem I thought your daughter had? It turns out she doesn’t have it. We got a better x-ray yesterday and saw that her heart is just fine.”

I mumbled a “thank you,” and shuffled away. I couldn’t believe there was amazing news about Maddie’s heart right when it appeared she was about to die.

Heather, after hearing about Maddie’s condition, told me that she was going to check out of the hospital against doctor’s orders once again and come to the NICU. I then went upstairs to wait.

My parents soon arrived and found me sitting in the chairs by the elevator practically comatose. I started to babble about arranging a funeral for Maddie, but they told me not to discuss that yet…to be hopeful. I nodded and stared into the distance. I just wanted Heather to arrive so badly.

Eventually the elevator doors opened and Heather walked out. Despite having been on bed rest for months, and mere hours after having major surgery, she had walked the long way from the parking lot to the NICU because she wasn’t about to waste time waiting for a wheelchair. I jumped up and took her hand.

Together we walked into the NICU. As we got closer to Maddie’s isolette I saw it was no longer surrounded by doctors and nurses. I initially feared the worst until I saw Maddie still laid in the isolette. I then looked to her blue number – it was in the nineties. I couldn’t believe it.

Heather and I hurried over and looked in at our baby. Her tiny chest rose and fell. She was very much alive.

The doctors, it turned out, had once again managed to release the air constricting Maddie’s lungs at the last moment, and from then on Maddie was on the road to recovery. There would be setbacks along the way, but nothing like the first few days. Finally, sixty-eight days after she arrived at UCLA, Maddie was on the way home.

 
We give thanks every day for the amazing work of the NICU’s doctors and nurses, and for having an incredibly strong daughter who just wouldn’t give up.

In PART FOUR, after nearly 24 hours of relative stability with Maddie, I received a phone call from the head doctor telling me to get to the hospital ASAP as Maddie’s status had changed greatly in the wrong direction.

In my car on the way over to the NICU I called Heather and related what I had been told in as calm a voice as possible. The reality was, however, that I was scared out of my mind. It was the kind of fear where you don’t cry or scream, you just feel cold and can’t stop shaking. Once I was off the phone with Heather (who told me her mother was on the way), I called my parents and told them what was happening. They said they would get to UCLA as quickly as possible. By this time I had parked my car and was running into the hospital.

My heart sank upon walking through the doors of the NICU. Alarms on Maddie’s monitors were blaring, her blue number (tracking her blood/oxygen level that should have been 90+) was down in the forties, and a crew of nurses and doctors were gathered around her isolette. I watched as they barked orders at each other and worked on her little body, but the blue number kept falling. When it tumbled into the 30s tears welled in my eyes, and I turned and hurried out as I couldn’t keep tears from falling. A nurse ran after me and said, “Papa!” I turned and she handed me a box of tissue.

A couple moments later Dr. Walker came out of the NICU and asked me if I’d like some privacy. I nodded, and she lead me to a room in the back normally used, it appeared, for viewing videotapes. Dr. Walker took a seat across from me and said that she understood that what I was going through had to be incredibly hard, especially with my wife still at the other hospital. She then asked me if I had anyone who could come be with me. I told her that my parents and in-laws were on the way. She nodded and stared into the distance.

“I’d like to be able to tell you that Madeline is going to pull through,” she finally said. “But I can’t say that right now. She is very, very sick, and while we are trying our best for her I want you to be aware of the possibilities. Do you understand?”

I nodded.

She then added, “If you would like to speak with the hospital Chaplain now would be a good time to call him.” I told her that I wasn’t interested in that right then and just wanted them to continue focusing on Maddie. She nodded and said she would give me a little privacy.

I called Linda’s cell phone to see if they were almost here, since I knew they would arrive before my parents, and she told me that Heather’s Dad, Kirk, and her brother, Kyle, were on their way but that she had decided to stay with Heather. That made sense in light of what might happen. I then sat in the videotape room for a while trying to compose myself. Finally, my cell phone rang. It was my parents calling to find out where I was as they had arrived.

I went into the waiting room and found my parents, as well as Kirk and Kyle. I tried to remain composed as I told them what was happening, but found it very hard to do so. In addition to being afraid of losing my baby, the thought that Madeline might die before Heather got a chance to see her was sickening. It only took a second of seeing all of my family members before I started crying. I know, I know. Some guys will think I’m a wimp, but all I can say is I would gladly trade getting sacked by Lawrence Taylor in his prime for having to watch my tiny, little baby die in front of my eyes.

After explaining everything I took a seat and looked around the room. Kyle was looking down at floor, Kirk was staring into the distance, and my parents seemed stunned. My mother, in fact, was wringing her hands, and I remember thinking, “Wow. She is wringing her hands.” I had heard that term plenty of times, but never actually seen someone wring their hands live and in person. Eventually, after what seemed like hours, but must have been minutes, one of the fellows came in to speak with us.

The fellow’s name escapes me, but Heather later met him and dubbed him “Wayne,” as he sort of looked like Fred Savage’s brother on “The Wonder Years”. Anyway, Wayne looked white as can be, and, despite doing a great job, sort of looked like he was about to puke as he sat across from me and said that things had gotten worse than when Dr. Walker had talked to me previously.

“Worse?” I thought. “Worse than when she told me Maddie was probably going to die?”

He then asked if we wanted to have the hospital’s chaplain come up to advise us, and if we did we really needed to say so now. My Mom said, “Yes, bring him up here!” but for a number of reasons, the strongest of which was that I didn’t want to give the doctors and nurses the idea that we were throwing in the towel, I declined. Instead, I told Wayne to just focus on working on Maddie “medically,” whatever that means, and he nodded before disappearing.

The unspoken implication of being told by doctors twice in twenty minutes that I should speak with the chaplain was not lost on me, however.

At that point Kirk decided to go downstairs so that he could call Heather and tell her what was going on. When he came back he told us that Heather, upon learning of the direness of the situation, was going to insist on being discharged against doctor’s orders.

The next few minutes were miserable. I had been told earlier that hovering parents could be a serious distraction in the NICU when things were really bad as they were now, so I decided to stay in the waiting room and not risk doing anything that might hurt Maddie’s chances. This was not easy though, as I knew that just down the hall my sweet baby daughter was fighting for her life. Or maybe she had already expired and they just hadn’t told me yet? These were the thoughts I was left with.

Eventually Wayne stepped back into the room and I knew that it was a very real possibility that he was there to tell me that Maddie had died. In the split second before he spoke I imagined how that horrible, unimaginable scenario would play out until he finally spoke.

“She’s doing better…for now.”

There was a collective gasp of relief in the waiting room. Wayne went on to explain that Maddie had been blowing pneumos, which basically meant that holes were breaking open in her lungs, and that air was seeping out of them and blocking her lungs from inflating, and thus stopping Maddie from breathing.

Wayne went on to explain that they had done what they had been taught, to insert tubes into Maddie’s side to try and suck out the air that was restricting her lungs, but it wasn’t working. Maddie was about to die.

At the last moment someone…I never found out who….decided to throw out the book on all they had been taught and to stick a tube directly into her lungs. Unorthodox as it may have been, it released the air that was blocking Maddie’s lungs from inhaling, and it saved her life.

To be continued in PART SIX when Maddie once again takes a turn for the worse, and her vital numbers plummet to unimaginable depths.