Her Story

I know that it has been a while since I've blogged about Abby's story. I'm having difficulty with the next section. Not emotionally, but strategically within the context of the entire experience. That being said, I've found this exercise to be both therapeutic and emotionally draining, which is why there is normally a bit of time between 'episodes'. And in the interim, I try to blog about one or two light-hearted topics (when someone doesn't throw out the R-word that is). I can normally just feel when it's right to continue. And I'm starting to get that feeling now, but as I've said, I've run into a little touch of writer's block. Be patient, dear readers, it's coming.

Part VII -- The First Night

The cardiologist came in around 10:00 at night. The NICU was quiet, and we stood next to Abby's bed as we anxiously waited for her to set up to do the echo. She began evaluating Abby's heart and studying the Doppler images on the screen. I wouldn't let my eyes stray from those pictures, though I could not decipher their meaning.

Slowly, the doctor began to speak to us. Structurally, her heart looked good she told us. And with those words, relief swept over me. She advised us that Abby did have a specific type of murmur, called a patent ductus arteriosus, or PDA. During fetal development, this shunt protects the right ventricle from pumping against the high resistance in the lungs, which can lead to right ventricular failure if it closes in-utero. While this shunt normally begins closing with a newborn's first breath, Abby's didn't. And so some of Abby's oxygenated blood was being misdirected and not allowed to reach her body. The PDA was by no means life threatening and would require no immediate action. It would be a wait and see approach and something for her regular pediatrician to keep an eye on. As far as we were concerned, she passed her echo with flying colors.

We stayed with her for a while, but eventually we kissed her goodnight and went back to the room. Abby was sleeping and everyone had gone home. At night, the hospital changes. It's quiet. It feels slower and the stale air rests heavier on you.

And there we were. Alone. I slid the cot next to the bed and Megan and I laid down next to each other. The curtain that hung from the ceiling shielded the light from the nurses station and we tried to make the hospital linens that we were covered with shield us from everything else.

And within the darkness in which we rested, the fear came back. And with it, the uncertainty and disbelief of the past 14 hours. Is that all it had been? Surely, a lifetime had passed.

And so we took turns comforting each other. Alternating between the one needing strength and the one giving it, we made it through that first night.

Looking back now, I know where we found that strength.

It came from a little girl down the hall.

A little girl that had so much, she gave it to her parents who needed it so badly.

To be continued.

Part VI -- Surgery

Children with Down syndrome are at a significantly higher risk of cardiac related birth defects. There were no obvious signs that there was anything wrong with her heart, but a pediatric cardiologist would have to evaluate her.

We were told that she would have an echocardiogram that evening and be scheduled for surgery to repair her esophagus the following day.

Things changed. The doctor informed us that they needed to do the surgery today, before consulting with the cardiologist and without knowing if there were any structural defects with her heart. With each breath, her abdomen was distending. She likely wouldn't survive if they waited to do the surgery the next day.

I understood there was no choice. Stranded in the desert and dying of dehydration, one cannot be concerned with the quality of the only water you find. There are priorities and there are immediate needs. But I needed to know what the risks were by doing the surgery before knowing anything conclusive about her heart. The only assurance I got from the neonatologist was that she was not cyanotic.

We met with the surgeon and he explained the procedure to us. He reassured us that no one in the area has performed more of these types of surgeries than he. He told us what he would do and that as a result of the surgery there would be a 100% chance that she'd have reflux. Reflux I could manage. But a cardiac defect? I was not at all worried about the surgery. I prayed her heart was strong. Abby had taken mine the minute she came into this world and now I was frightened for hers.

Slowly, family started to arrive. We hugged. We cried. We had questions. We wanted answers. There were none. We relived each moment over and over again and tortured ourselves with searching for reasons where none existed. We promised support for each other. None of us were alone, but each of us felt as though we were.

A nurse came into the room and told us that the surgery was over and the doctor would meet with us. We hurried into the lounge and waited for the surgeon. Finally, he came in. He told us that the surgery could not have gone any better. At that moment, I realized that I was in fact concerned about the surgery. Of course I was. How could I not be?

The repair would be evaluated in a day or two and if it was sound, we could start feeding her. We made plans for her to be at the hospital a few more days. Maybe a week. But no more than that.

And so we waited. We waited for the cardiologist. Family left and still we waited. We stayed with her in the NICU. I looked at the other children. The other families. What were their stories?

Each of them had one.

No one wanted one.

To be continued.

Part V -- I Remember

There is a lot about that day that I remember. Details that remain with me. Things that, by themselves seem small, but that loom large within the fabric of my story. Of Abby's story.

There are also gaps of time that are lost to the tragedy of that day.

The doctor left us. The nurses, after offering a consoling glance, followed him out the door. Meg and I remained in the room, but we were not alone. With us was a sea of uncertainty. Of sadness. Of disbelief.

We said nothing for a long time. There was nothing to say. We held each other and silently grieved for the daughter that we lost, scared for the daughter that we had. We didn't understand what was happening, and we certainly didn't understand why. I don't remember who spoke first or what was said, but I know that what was spoken was said out of fear. I know that now.

I remember calling my parents back. My mother heard me say "hello" and immediately she asked what was wrong. I must have told her about the TEF first, because I remember saying that there was something else.

I told her that the doctor thinks that she has Down syndrome. I don't remember what she said next. I don't remember what I said next.

I don't remember what there was to say.

To be continued.

Part IV -- Windmills & Tulips

I never had any particular desire to visit Holland, but it was to Holland that I was going. And it was in Holland that I would stay.

An hour and a half after Abby was born, the neonatologist came into the room. I was sitting next to the bed. The two nurses were standing in the corners of the room. The doctor sat down opposite me. I didn't like that he was sitting.

He wished us congratulations on our beautiful new baby girl. He asked what her name was to be. Abigail Elizabeth we said. Abby.

He told us that there were a few things he needed to go over with us. "I don't suppose you had a chance to look at her after she was born, did you?", he asked. We both nodded, not quite yes, and not quite no.

Here it comes.

"There are several physical characteristics that I noted", he added.

Here it was.

I felt terrible for already knowing this for over an hour. I had already been processing it as the reality it was. Meg didn't know. I was scared for her.

Trisomy 21. Down syndrome. He stole our baby as the words came out of his mouth. He took our daughter. AJ's sister. Our dream. Our family.

Moderate to mild mental retardation. IQ ranges. Early intervention. Therapy. Special Olympics. Support groups. If I thought this was too much information to handle, to process, then the next hours, days, and weeks, would test my very ability to function as a person.

We held hands. Meg looked at me. She looked terrified. I looked back at her with the slightest hint of a smile, and I nodded "I know".

I knew.

But there was another problem. Her esophagus hadn't formed properly. Coming up from her stomach, it was connected to her lungs. Travelling down her throat, it ended in a blind pouch. Tracheoesophageal fistula with esophageal atresia. Otherwise referred to as TEF, it is a birth defect occurring in roughly 1 birth in 4,000.

It is why the tube they used to suction the amniotic fluid out of her nose and lungs after birth wouldn't pass far enough down. It is what caused the bubbles at her mouth. It was what would require her to undergo surgery 5 1/2 hours later.

And it was what most likely caused the infection that would very nearly take her from us forever.

To be continued.

Part III -- Waiting

I took a picture of Abby as they wheeled her out of the birthing room and down to the NICU. She had a little pink hat on.

We began the ritual of calling family and friends. I remember calling my parents and telling them simply, "7 pounds 4 ounces". They never told us her length. They were shocked. Not by the weight, but by how quickly things happened. I heard them tell AJ that his new baby sister was here. "I am happy!", he replied.

My Mom asked if everything was alright. I said yes, but that they were taking her to the NICU to make sure her lungs were OK because of the meconium. We called my in-laws, sister-in-law, work. We gave everyone the good news. I knew that the news likely wasn't all good.

And so we waited. But we weren't alone. Two nurses -- actually an RN and a student nurse -- were with us. They came in and out of the room, but they were there. They were there because they knew. They clearly knew. One of them went down to the gift shop and bought Abby a little stuffed animal. One that wouldn't leave her side for six weeks.

I tried to put it out of my mind. I knew it couldn't really by true. I tried to read, but I couldn't. I looked at the pictures I took of her. I focused on the one where she had the pink hat on. I was overreacting. Look at her. No way.

Meg talked on the phone. I paced. I looked out the window. It was overcast. I looked at the traffic on the road. At the cars pulling in and out of the hospital parking lot. I looked at the pictures again. I became more convinced.

That it was true.

To be continued.

Part II -- Beautiful Eyes

I didn't notice how far the tube went into her nose and down her throat. I didn't notice how far it didn't. I didn't notice the bubbles at her mouth.

I noticed her not crying, but they told us they didn't want her to. Her eyes were open and she was pink.

Meg was exhausted. We had only arrived at the hospital a little over an hour ago. She laid back in the bed and breathed a sigh of relief. I wasn't ready to allow the breath out yet. They let her hold Abby for a moment before they took her.

I stayed at Meg's side while the doctors were with Abby. At the foot of the table where they had Abby, there was a nurse -- one of many. She was tall with blonde hair. We made eye contact. There was no expression on her face. She broke her gaze and went back to work.

A few minutes later, they called me over so I could take a look at my new baby girl. I went over to see Abby. I looked at her and smiled. I saw her eyes. I saw it instantly.

It was in her eyes.

To be continued.

Part I -- Delivery

Meg said that it was baby day. We both tried to get back to sleep and did -- at least I did -- for a little while. It was about 3:00 in the morning. I was excited, but something felt different than 3 years prior when AJ was born.

I took our 3-year-old-to-be to my parents' house. He knew his baby sister was going to be joining our family. When I got back to the house, Meg was eating breakfast in between contractions. She knew that once at the hospital, her sustenance would consist of little more than ice chips.

We got in the car and headed down to the hospital. Meg knows that if I don't have coffee in the morning, I'll get a really bad headache. She asked if I wanted to stop, but I said no. As we got closer to the hospital, we hit a lot of morning rush hour and school traffic. We were stopped at a light where there was a Wawa. Since her offer still stood, I pulled in and got some coffee and a breakfast sandwich. When I got back to the car, I really noticed just how uncomfortable she was. The contractions were getting pretty intense.

Meg was supposed to have an ultrasound that morning at her OB's. At her previous visit, the doctor wasn't 100% sure that Abby was head down. She had been, and most likely still was, but they wanted to be sure. At the hospital, she was evaluated in a triage room. She had a lot of extra amniotic fluid and I could see the concern growing on the faces of the doctors and nurses. I asked if everything was OK. Unconvincingly, they said yes.

She asked for something for the pain, but there was nothing they could do. She was 9cm already. Between contractions, they tried to check Abby's positioning with the ultrasound. She was pushing. They told her to breathe. If you breathe, you can't push.

She was head down and we were wheeled into the delivery room. They told us she'd deliver as soon as they broke her water. There were a lot of people in the room. They broke her water and the doctor examined the fluid on her fingers. It was streaked with meconium.

The NICU staff was there and the warming table was heating up. She looked at me and told me she was scared. So was I. She started pushing. She was making good progress, but Abby's heart rate was going down.

They told her she needed to deliver now. And she did.

She was beautiful.

And so was Abby.

To be continued . . .