Five Months Ago - The First Week

The day of my delivery, I had several visitors come to give support - my roommate from college, my best friend from high school and her husband, my older brother and his family, my parents, and my younger brother. It was a moments relief to have them there. I spent the rest of the evening up and about.

When our visitors left, Michael and I went down to see the baby before we went to bed. The hallway leading to the NICU has a "Wall of Hope" - consisting of pictures of normal, healthy children who were born exceptionally early. I couldn't look at the pictures. I don't know why, but I wasn't ready to look at them.

I was surprised to find that the baby had his own room. On the outside of the door, they had posted a sign that read "BB Pope." As we walked in, the nurse on duty followed us to the baby's isolette. I didn't expect to see the baby underneath a Bili light - I guess I had assumed that those were only for full-term babies with jaundice. He was an odd red color from the blood that they were giving him. Beside his isolette there was a Christmas tree of medicine pumps. I remember that we were most concerned about his blood pressure and blood sugar those first few days. The nurse spoke to Michael only - as she had when I had visited the baby earlier in the day with my parents. I was becoming increasingly frustrated. Did they feel like I didn't need to know or couldn't handle what was going on with my baby? Finally Michael said something to the nurse about me being the baby's mother and she looked at me like she was seeing me for the first time. She said, "OH! I'm sorry. I didn't think you were the mother. Our moms usually arrive wearing pajamas and sitting in a wheelchair." I had changed into jeans and a maternity top that my mom had hurriedly packed me before coming down to Little Rock a few days prior. I felt relieved to know that I wasn't intentionally being ignored.

I was exhausted from the delivery and from spending so much time walking around the hospital all afternoon that we didn't stay in the room with the baby very long. We went back to the recovery room and fell asleep quickly. About four in the morning I woke up and couldn't go back to sleep. Michael was asleep in the uncomfortable hospital chair that was positioned close to the bed. I tried to get him to take my bed (I wasn't tired) so that he could get decent sleep for the first time in four days. He refused to take the 'patients' bed. I convinced him to share it with me...when he fell asleep I tip-toed out of the room and made my way to the NICU. The nurse on duty was an incredibly sweet lady who seemed to be in love with her job. As I walked in, she was busy doing a few things in the isolette. The baby wasn't moving and I learned that he was being given quite a lot of pain medication and sedation. I began to cry. The nurse pulled up a chair to the isolette, gave me a quick hug, and left me to be with the baby alone. I sat for an hour or so, just praying for him.
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The first three or four days are a blur to me. We continued to get good reports from the doctors and nurses about how well the baby was doing - in fact, exceptionally well for his age. They even attempted to take him off the ventilator because he was breathing room air and trying to breathe over the vent. It didn't work but they had plans to try again in a few days. I began to think that maybe I was further along in my pregnancy than I had originally thought. Everyone seemed surprised about how well he was doing. Of course, I did hear that notorious phrase "Never trust a preemie" - meaning that things can change at any time - but I tried to ignore it. During this time I never touched the baby. There was a "minimal stimulation" order put in - which meant that no one touched the baby unless they absolutely had to.

We were flooded with congratulations, prayers, and consolations from friends and family. I had mixed feelings about all of them. I felt like those people who were congratulating us didn't have a good grasp on the seriousness of the situation (of course, looking back, I know that isn't so.) And as grateful as I was for the people who told us they were praying......I felt so very sad that we weren't the happy parents of a beautiful baby that we should have been. I kept rubbing the place where my little baby bump had been, thinking how oddly empty I felt.

During the day, Michael and I stayed in the room with the baby. Most of the time we were researching baby names and talking through the past few days. We discussed several names. Samuel was never a name that we had considered before his birth but it seemed appropriate. It means "one prayed or petitioned for." It was the only name that felt right to both of us. Michael was set on the baby's middle name being Charles - which is a family name. I'm ashamed to admit that I was the hold up on naming the baby. I wanted to name him Samuel Caden - which means "little fighter."

Each night Michael went to a sleep room across the hall from the NICU, and I stayed in the NICU room on the couch (only one of us was allowed.) The nurses came in every two to four hours to draw blood....I was too worried to be sleeping much anyway.

On the fourth day, Michael went back to work and I stayed with the baby. We knew we were going to be there for the long-haul. The doctor told us that we would be there until about the time the baby would have been due (July 4th.) My mom came and stayed with me in Michael's place.

The fifth day was the turning point. After the doctor rounded, he called me over to his computer to point out the lung condition that was beginning to show itself on the baby's lung x-ray. He called it PIE. He told me that the plan was to take the baby off minimal stimulation and begin to roll him on his sides - hoping that it would help open his lungs.

Day number six was probably the worst day of my life. The PIE was getting worse but otherwise Dr. Ross felt like the baby had been doing so well that it was time to begin feeds. They began them in the early afternoon. The baby's vitals began crashing around 5. No one knew what was wrong. His blood pressure was lower than it had ever been. His heartrate and oxygen level were dropping...the alarms were blaring. Each time the alarm went off I felt sick. Things kept getting worse. Around 9 o' clock the nurse called in the on-call neonatalogist....who unfortunately turned out to be Dr. Yap (the neonatalogist on duty who spoke with me on my first day at UAMS.) The doctor ordered an x-ray. She told me that they were looking for 'free-air' (air in the abdominal cavity.) The first x-ray didn't show anything but it was obvious that something was causing the baby to be very sick. He continued to get worse. Around midnight, I couldn't handle much more. I hadn't slept more than a few hours at a time since the baby had been born.....and it was all I could do to keep it together. I told the nurse that I was going to go to my mom's sleep room. She gave me a very stern look because people aren't supposed to share a room - she was adament that we not break the rule. I didn't know if I was actually going to sleep there, but I wanted my mom's company.

My mom and I went back in the room and I called Michael to tell him what was going on. For relief's sake, we discussed the baby's name again and once again we disagreed. Sometime after the phone call ended, my mom asked me, "Don't you think you need to name him?" She voiced what had been going on in my head since speaking with Michael. We needed to name him and I felt like time was running out. I called Michael back and told him.

The next half hour was long and and stressful. I felt sick. Whatever I was feeling, I know it was that much harder for my mom to watch me go through it. I was praying with every spare moment and thought. I felt like I couldn't say enough to adequately plead my case to God. My mom and I had the toughest conversation that I have ever had. I told her that I wondered if I needed to let the baby go. If God needed to take him, then let Him take him. After a while of thoughtful silence, my mom suggested that we go back into the room, lay hands on the baby, and pray for him. We went back in, opened the isolette for the first time, and we both put our hands on him. I prayed that if it was God's will to take the baby - then He should take him....but that I wanted more than ANYTHING to keep him. I loved him already. My mom prayed and we both cried. The hospital had given me a snoodle...(a doll-like thing that I was supposed to keep next to my skin...then give to the baby so that it could smell me while in the isolette)....which I had worn, but had refused to put in the bed with the baby for fear of germs. I'm not sure why, but I felt like it was important that he knew me....knew that I was there....so I placed the doll by his body, closed the isolette, and we left.

It was getting close to three by the time Dr. Yap knocked on my mom's door. Suddenly I had the greatest sense of peace. I know it was all of the prayers. The doctor told me that they had discovered free air in the baby's belly on the most recent x-ray. He had a perforated bowel...which began with the feeds. He would need to be transferred to Children's and may need emergency surgery. Someone handed me paperwork to sign - permission to transfer by ambulance and release of medical records. I was told that EMS would be there in the next thirty minutes to get the baby. Michael and my dad were on their way. I texted everyone in my phone to please pray for the baby (sorry those of you who got a text at three in the morning....and thank you to those of you who responded....)

EMT finally arrived, and began asking me all of the baby's background information. They asked for his name and just as the nurse was about say, "He doesn't have a name" I said "Samuel Charles Pope." I can't describe how powerful it was to say his name for the first time. It was almost a confirmation that he would live.....

While I waited for them to wheel him out, I whispered my prayers for Samuel aloud. The EMT crew asked if I wanted to ride in the ambulance over to Childrens. The nurse looked at him like, "You aren't supposed to do that!" It was raining outside and by the time I made it in the ambulance, I was soaked.

We arrived at Children's a few minutes later (luckily UAMS is only a few exits down the interstate from Childrens.) My mom and I were led to a small waiting room to wait for the surgeon to come by with paperwork so that they could operate. I was informed that they would not need to do surgery at this point, but they would need to put in an abdominal drain. I signed, the surgeon left, and I laid down on the uncomfortable waiting room chairs.

About 5 am I was led into the room to see Samuel. I met the two nurses who were taking care of him. One was a young brunette with kind eyes. The other was a woman my mother's age...with reddish brown hair and a southern drawl. After a bit, I briefly left the room to pump, and came back to discover that my dad and Michael had made it in. I hugged Michael and burst into tears...for what must have been the tenth time in two days. The young nurse handed me a tissue and the older nurse continued to explain something to my dad. That older nurse was Carolyn....Samuel's primary nurse. I believe it was nothing short of a miracle that she was working that night....she only works days....and that she felt attached to us enough to request to become Samuel's nurse.

We also met Dr. Arrington that night...who just happened to be on-call. He's got to be somewhere around 60 years old....he can't work a lot of nights. He took Michael and I into a back room and showed us an x-ray. He wanted us to know that he would do everything he could to get Samuel on his team. His team, Team 3, is the only team in the NICU that has consistent doctors. I'm fairly certain I would have gone crazy those four months without the consistency that team provided.

The rest of this story, you already know. I began the blog a few days later with a recap of everything that had happened since coming to Childrens.

I've recently come across this story. I find it incredibly relevant......

Welcome to Holland

By Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. Less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.....and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away.....because the loss of that dream is a very, very significant loss.

But....if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...

about Holland.