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the Journey

my trip to Holland

Preparing for Battle

It has taken me a while to generate my next post. I did not fully appreciate how traumatic the next series of events were until I started to write them down. I could tell people megabytes about what happened, but did not allow myself to think or dwell on it. The mind has the amazing ability to protect and shield us from thoughts or memories that are difficult. This ability allowed me to do what needed to be done. People say that I am strong. I don’t feel strong.
Before I launch into what happened next I should give you a bit of the back story. I was young when Adi was born, 22 years old. I also had a gorgeous, loving well-adjusted 2 year old toddler – Bridger.  In the years leading up to motherhood, I was setting myself up for failure. I made a lot of bad, reckless decisions.  Having Bridger seemed to re-set me. He gave me perspective; perspective that I would need but did not know it.

I grew up in a flurry of mental illness. When you grow up with mental illness it can be difficult recognize what is the illness and what is reality.  My reality was that I was desperately trying to take control of my life in all the wrong ways. I wanted to distance myself from my mother, but never thought I could do it. My rational mind would tell me to run away, but the influence of the abuse held on to me tightly. My mom was also young when she had me; she and my father were married for a short time when I was very little. I was raised by my mom and never  got to know my dad. When I got old enough and started to try to run away from the reality that I knew, I ran to him. In my last year of high school and in the years leading up to when Bridger was born I had the opportunity to get to know him, and call him dad. I had the opportunity to establish relationships with family that were not abusive and triangular in nature. I could start to see the world from a different perspective, but I still had much work to do to escape the years of altered reality that I lived in. It sounds clichéd, you hear it all of the time “my child saved me”. My child, the act of having a child did not by itself, save me. It gave me the opportunity to lift my head above the cloud that I lived in to see the world from a different perspective. Without knowing it I was suiting up for battle, the battle of my life.

Slowly, Adi started to get a little stronger. As she grew stronger it was clear that something was wrong. She screamed all of the time; she did not cry- she never cried, she screamed. When she was not sleeping or trying to eat, she was screaming – she seemed horrified all of the time. Yes, babies can be demanding, but you can usually find a way to help them. When I would try to comfort her and hold her, her arms and spine would posture away from me. There was nothing I could do to calm or comfort her.  The posturing or arching back was another subtle clue about her future. I later came to understand that this was a sign of a brain injury. She never made eye contact with me or looked at me; she never felt safe snuggling into my chest. It was an absolutely helpless feeling. We had a home health nurse come to the home every day to check that all the monitors were running correctly and to check her vitals. Every day I held out hope that the nurse would come and be able to offer me some advice that would help me comfort her – she could not.  In spite of it all I held out hope. Hope that she was going to grow out of this, perhaps this was colic – a lot of babies have colic…”she was just a little early”

going home

That day did come, it was time for me to go home – and leave Adisyn behind. I packed up my belongings, the “going home” outfit, and the car seat. I had spent so much time picking out the perfect outfit, with matching bows and blankets. I had imagined the pictures, and how much joy getting to go home with my baby would bring. As I packed up, I watched those thoughts slip through my fingers….that day would come, but it would never be what I imagined.  As I was being pushed down the hall to the parking lot, all of the emotions that I had had over the last few days came up all at once. My eyes welled up with tears; I cried and cried and cried. I got into the car, put my seat belt on, and rested my head on the passenger door window and cried. “How could this have happened?  I am going home, and my baby is not”.

The next several weeks are still a blur. I embarked on a crazy schedule, in order to make it to the hospital by 7am – keeping in mind that Adisyn also had a 2 year old big brother who needed me. Every day she made a little progress.  It was not long before she graduated to “Nursery B”, the nursery for babies that are getting ready to go home. “We will show them, she will grow out of this – Her heart is strong. She was just a little early”.  Every 2 hours I would go to the “pumping room”, a room set up for mothers to pump breast milk for their NICU babies. The room was filled with “thank you” cards to the staff, coupled with pictures of their healthy babies – babies that were “just a little early”. I imagined that one day, Adiyn’s picture would also be on that wall – healthy and strong. She still needed oxygen and had significant apneic spells when she slept, but the issue that kept her in the hospital the longest was her inability to eat. Nearly 100% of her nutrition had to be supplemented with an NG, nasal – gastric tube. Every day, all day it seemed, we practiced feeding. She looked like she was doing all of the right things, her mouth was making all the right movements, but after 30 minutes of trying she would have barely consumed 2-6cc’s.

Adisyn never seemed to be awake or alert. When she was awake, her eyes gave me clues about what her future would look like. Thoughts that I never spoke out loud, and which I quickly pushed into a box – “her heart is strong; she was just a little early”. What I did not realize, is that when you have a baby with special needs, when you find yourself in Holland, you start to go through the stages of grief. I was in denial. In my heart I knew that this was not something she would grow out of, I could see it in her eyes, but I would not admit it. Not to myself, not to family, not to the staff, not to anyone – if I don’t say it then it is not true.

After a couple of weeks the doctors decided that it was time to send her home. She had not made any progress in learning how to eat, she still needed oxygen, and she still had apnea.  So, in order for me to take her home I had to learn how to keep her alive. They started by teaching me how to place an NG tube. If you have ever done this you know how tricky it can be, not to mention how painful it is to the person who you are placing in on. You have to push the tube up the nostril until you reach resistance. Then the tube can be gently twisted, applying a bit of pressure until it makes the corner and can be pushed down the back of the throat into the stomach. Once it is down, then it needs to be secured with tape – this part may seem easy, but it can be tricky on a screaming baby, and the last thing you want is to have to start over again. Once that is done, you have to check that it is in the right place – the stomach, not the lungs. This is done with a stethoscope and syringe, pushing a little bit of air down the tube and making sure that it is in the stomach. I had to learn how to do this, and once I could successfully place an NG tube down my baby then I passed. I passed that portion of my test. I was strong, I was a warrior, I was a nurse, I was going to be whatever I needed to be to get her home. Perhaps then this nightmare would end, and I would get to just be a mommy.

The next phase of our exit exam was the car seat test. She had to prove that she could sit in a car seat and be able to keep her airway open.  This she could not do, she had no muscle tone, and no ability to control her neck muscles. We worked to come up with solutions, she had to be able to sit in a car seat and be able to breathe. We learned that a receiving blanket rolled up, placed behind her neck would keep her airway open. Add that to the list of equipment: NG tube – check, tape-check, syringes – check, stethoscope – check, and receiving blanket neck role – check.

The last phase of the testing came in learning infant CPR and running the oxygen and apnea-halter monitor. To do this, and to prove to the doctors and nurses that I was competent enough to run the machinery I had to “room-in”. They gave us a room, much like a hotel room, but it had cameras – cameras with a live feed to the nurses station.  I got myself all settled in the room. I was so excited; I got to sleep with my daughter, in the same room for the first time!  I got to be her mom for the first time, by myself!  It took two nurses to bring her in. One nurse to wheel in her basinet, and one nurse to push all the machinery – the machinery that I was going to have to manage on my own. After a fairly quick tutorial on how the equipment worked it started sinking in. The alarm would sound every time she stopped breathing or her heart rate slowed down, or both…..every time my baby stopped breathing. I am taking home a baby that stops breathing, not just a few times, but all the time, every time she sleeps – she sleeps all of the time. In the NICU, the alarms are connected to monitors that are constantly being watched by a nurse. A nurse who, presumably, had had at least 8 hours of sleep before her shift –  she is alert and knows what to do. The alarms on the same monitors that are designed to go home are much different. They go home with parents, exhausted parents, parents that are functioning on no sleep. The alarms are loud and bone chilling – they are capable of waking the dead. I found the sound of them so disturbing, that it was better not to fall asleep. I lay there and watched the little lights; the light told me when she took a breath. When it had been too long between breaths…..one-one thousand, two – one thousand, three – one thousand…..four….then it would sound and I would be ready to silence it. I would silence it and then rub her chest, wake her enough to take a breath. I can’t really remember how many apneic spells she had that night, but I think it was in the neighborhood of 30. 30 times I had to get my baby to breathe.

The next morning we went over all of it again, and the nurse let me know that within a couple of hours a home health nurse would be at my house, followed by the vendor of the oxygen and medical supplies. This became a routine part of my life, nurses, or aides in my home and dealing with vendors to get supplies or fill up her oxygen. I had to keep records of how much she could eat orally, and how much I had to supplement with the NG tube. I never really slept. I lived in the recliner with Adisyn in my arms, trying to feed her and keep her in that perfect position, the position that she stopped breathing the least. I never really had time to feel sad, to process what had happened – I was a nurse, a warrior, I had to be on top of my game all of the time, 24 hours a day.

my trip to Holland…..

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”…..

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