WELCOME TO HOLLAND
“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 plane lands. 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. It’s slower-paced than Italy, 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.” ~ Emily Perl Kingsley.
I was given this poem shortly after the birth of my daughter. It can be applied to many life changing events, but this metaphor is used specifically to help families cope with having a child with a disability. Suddenly I found myself in Holland – even though I was quite sure I would be able to go back to Italy, my trip was going to be short. Yet, even now, every time I read this poem I develop an overwhelming lump in my throat….I went to Holland, and never got to see Italy with my daughter.
I can remember giving birth to her, but not in the same way that I remember having my boys. I watched her birth rather than lived it. I was out of my body, rather than being present. Everything was “fine”, except it was not “fine”, I knew that things were not fine most of my pregnancy, but there were no symptoms or red flags to suggest to the doctor that I was right. So, other than she was coming four weeks early, it was business as usual in labor and delivery. As she began making her way down the birth canal, she started to show signs of distress. Her heart beat slowed down – dangerously low. I managed to stay collected and calm. In my mind the problem was in-uturo, I was convinced that if she could make it through the birth process she would be okay. I noticed the Doctor and the nurse exchange a knowing glance and then suddenly they were both very attentive, they stayed calm, but I could see by their actions that they were preparing for an event that was not “fine”. As she entered the world, the room was silent. I can remember panicking when my oldest son was born and did not cry the second his face met oxygen, so her silence was not causing me panic. I comforted my now, ex-husband, “its okay, sometimes their first breath can take a few seconds”. Suddenly the room was filled with a flurry of activity as nurses filled the room. I scanned the faces trying to understand what was going on, there was a lot of activity, but there was no noise – no crying.
The doctor brought her to my bedside, she was gray, lifeless. He explained that she is not breathing well on her own, and showed me how slow her capillary refill was. He continued to explain that they were going to give her some help breathing and she was going to go to the NICU – Neonatal Intensive Care Unit. With that, he took her to an open isolate that someone had brought in the room and began performing chest compression’s. They used a bag to give her air. Still, no crying, no coughing, no noise at all. My newborn, the little girl that I had been dreaming about for the last 8 and a half months was receiving CPR.
The flurry of activity followed her out the door. I was helpless, there was nothing that I could do…..I watched as they disappeared from sight. All that remained in the room was my OBGYN He assured me that she was in the best of hands and someone would keep me posted. I was numb. I asked if I could go with her. He said no, that I needed to be able to stand on my own before I could leave my room. Then he left the room. I have no idea how long I was alone in my delivery room, but it felt as though I sat in there by myself for hours. I desperately wanted someone to come in and tell me that she gave us scare, but she is breathing and just fine now. No one came. I kept working on my legs, wiggling my toes, lifting my legs in a desperate act to get the medication out of my system so that I could go wherever it was, wherever they took my daughter. The silence was palpable. Finally a nurse entered my room, she had no updates for me but indicted that I could go visit her now. As she pushed me down the hallway, I remember every ceiling tile and the glare of the bright inset florescent lights as we ascended down a long hallway, it was if I watched the nurse push me down that hall. The hall was probably not very long, and I am sure that there was an elevator involved. To me it seemed that I was going down the longest hallway on earth and that it would never end – I would never get to see her. As we entered the NICU, I was surrounded by the humming of machines, incubators and isolates, all with tiny, fragile little lives being supported by them. At this point I had very unintentional shift of consciousness. I went from being very concerned for my unborn child, to being convinced that my baby was going to be fine, she was just a little early.
As we rounded the corner, there she was. Lying on her back, her chest vibrated up and down. She had a breathing tube down her throat; she was covered in leads and wires. Her eyes were closed – she was lifeless. As I moved in closer, I wanted to touch her but I was afraid. I sat there and looked at her, I wondered if she could feel my love and if she knew I was there. I desperately wanted to scoop her up and hold her tight – but I could not. A NICU nurse came over when she had a chance. She explained to me that when she came to the NICU she was unable to breath on her own. She was given surfactant, an oxygenated fluid that they filled her lungs with, and a ventilator was placed to breathe for her– this is what is causing her chest to vibrate up and down. She explained that once she was stabilized, they would start running tests to insure all other body systems were working. I nodded, I suddenly realized that I was in uncharted territory – this was not a routine visit. They had no idea why she was so sick, I nodded and replied “of course”, as if I knew what she meant. “What tests?, Why tests?, What makes you think that there is something other than just being a little early?”, “sure her head is a little big, but so is mine” all these thoughts ran through my head like a broken record – over and over….”what aren’t they telling me? Why are they running more tests….she was just a little early….”
In the wee hours of the next morning after having almost no sleep, the Neonatologist came into my recovery room and stood at the foot of my bed. I had quite a shock when I came to, but quickly sat straight up in my bed. He began by stating in a very matter of fact way stating: “When we took an x-ray of your babies chest to see her lungs, we found that she has quite unusual deformities of her ribs”. He turned on the x-ray lamp and slapped up her chest x-ray. As I gained focus I could see very thin ribs that were wavy, like a bowl of spaghetti. He went on to say “when we find deformities such as this, we wonder what other sort of deformities may have happened during development”. “We are going to need to rule out other malformations that she may have, we are also going to run Chromosome tests”. These words were so low, and so heavy, the weight of them made me feel as though I was sinking in quicksand, and the more I tried get out, the more I sunk. Before he left he turned to me and said, “the good news is that her heart is strong”, these are words that I clung to for the next several weeks. “her heart is strong, she was just a little early”, “her heart is strong, she was just a little early”, “her heart is strong, she was just a little early”. 12 hours after being ventilated, she was able to breath on her own, with oxygen! This was a huge milestone! This meant that I could hold her for the first time! I knew that everything was going to be okay; all the other babies needed ventilator’s for much longer, she was a fighter, “her heart is strong, she was just a little early”. I was overcome with emotion when they put her in my arms, she was so fragile, he little body was so frail and week. Her head measured in the 105th percentile, giving a person a false sense of how big she was – she was tiny. While I held her the nurse told me that while we were still waiting for blood work (code for chromosome tests) to come back, all of the preliminary tests came back “normal”…. “her heart is strong”, “she was just a little early”. As I looked at her face, I had still not decided what to call her. All of the names I had picked out did not seem right. I could feel her energy, she was strong, she was special, she was an angel. I ignored the concern I had about her forehead seeming so large, and her ears being so low and that when she opened her eyes all that I could see was the white of her eyes… “her heart is strong, “she is just a little early”, stomped down any thought that may have entered my mind that maybe she did have a syndrome, a neurological condition.
Now that I could hold her, the nurses had to kick me out of the NICU during the non-visiting hours and shift changes. I would make my way back to my room, and then watch the clock until I could go back. Being on the recovery floor presented me with a whole new emotion, one that I don’t think anyone understands unless they have been there. Clearly it was not something that was considered when they assigned me a recovery room –across from the nursery. Yes, I had just had a baby, and I needed to recover, but on the floor across from the nursery?? The nursery where family goes to admire their new loved one, the newest member of the family, the baby….unless of course the baby is in NICU, then your baby is not there. As I made my way to see my baby, I passed the rooms, the rooms filled with balloons, flowers, family, and the baby. I watched with dread as mothers were being wheeled out of their recovery rooms with their baby in a cute “going home” outfit and a fancy new car seat – going home. I dreaded the moment that they would want to discharge me, “they could not do something so cruel, I am sure they have a place for me to sleep, I live 30 minutes away”…..