Guilt and the Nicu
A personal journey to inspire others.
This is Addison, she is my heart, my soul, my miracle. When I first realized I was pregnant, I was frightened. Although I wanted a baby, I had just undergone a dose of radioiodine for thyroid cancer and was told not to get pregnant for at least six months. I had been trying for years and didn't think I could get pregnant. Apparently there was something special in that radiation because a couple weeks later I was pregnant.
I consulted with several doctors who consulted with radiation specialists and they finally came to the conclusion that everything should be okay. Yay! I was going to be a mom! And I was going to be a cool mom, like my mom who used to make treasure maps for us and burn the edges of the paper so it looked really old! I couldn't wait!
Addison was due on October 7th 2009. Things seemed to be going well but early in June I started experiencing a great amount of pain. I talked to my OB about it and she told me it was a normal part of pregnancy and to sit on an ice pack. She refused to examine me. I believed her because I had never been pregnant before and did not know any better.
A few days later, I went back to the doctor because I was bleeding. I was told to leave and go to the hospital and that I was going to lose the baby. I was devastated as I drove the 45 minute drive to the hospital alone.
Once I arrived I was examined and told that I had an incompetent cervix. In order to try save the baby (which at this point I still didn't even know the sex of) the doctors put me in the Trendelenburg position, which is basically your feet high above your head. This, combined with lots of medication, gave me the chance to grow my baby for two more weeks.
A Miracle Was Born
Addison was born on June 21st 2009 (The first day of summer, and Fathers Day that year) at 24 weeks and 4 days. She weighed 1 pound and 6 ounces. Her eyes had not even opened yet. The whole experience was terrifying but, the moment I saw her tiny face, I was in love.
I did my best in those weeks, hanging upside down in the hospital, trying to grow my baby a little bit longer. That time certainly helped but, we still had a long road ahead of us. She was the strong one though, and she quickly earned the nickname "Addytude"
Trouble in Paradise
One of her first issues was that her PDA valve never closed up. This is an opening near the heart that allows blood to flow away from the lungs before birth. Once we are born, it closes. Because hers did not close, she was unable to feed until after she had PDA ligation surgery to close the opening.
From there, it was a roller coaster ride of ups and downs. Among other things, she eventually developed a condition called NEC. This is a condition where the intestines basically start to die. This was devastating news and one of the things we feared most would happen to her. She ended up having 60% of her small intestine removed.
It was hell...
Her intestines were separated and the dead portion removed. She had a colostomy bag for nearly two months until she grew big enough for the surgeon to re-sect her intestine.
Addison stayed in the NICU until December 2nd 2009. It was a long and terrifying journey. She suffered many other conditions and issues during this time. During this time, I endured my own hell... The hell of a mother unable to help her suffering child.
Amazing and Terrifying
The NICU is one of the most amazing, yet at the same time terrifying places I have ever been. I once wrote a poem to try to describe it. The poem was written for a contest to describe your child's first bedroom. This is how I described mine.
The Plastic Box
Fluorescent lights glow above a clear plastic box.
So many Wires, tubes, machines
A ventilator pumping oxygen
An IV, pumping meds,
pumping blood, pumping food
Fingerprints and tears smudge the side of the box.
Latex gloves, masks, isolation gowns
A sink and a sign "3 minute scrub in"
A stash of skin burning soap
Antimicrobial wipes and hand sanitizers
There's a monitor mounted on the wall above the box.
Breathing rate, heart rate, oxygen level
And the levels go up and down, mostly down
and it beeps, and it beeps, and it beeps
And it flashes a red alarm
A sign hangs on the wall above the desk by the box.
"Addison Riley, 640 grams, 11 inches"
Stamped with two feet and two hands
Smaller than hands or feet should be
It's surrounded by Doctor orders
Small silver digital recorder lays inside the box.
Sleeping Beauty, Snow White, Cinderella
A desperate mothers voice, set on repeat
The words "Happily Ever After" bounce
From plastic wall to plastic wall
The Roller Coaster
Sometimes she got better and sometimes she got worse. Her father and I spent so much time there at the hospital with her. We were there every day, as long as we could be. When we were not there we would call to check on her every hour. We would wake up in the middle of the night to call, and sometimes in the middle of the night we would make the 45 minute drive to see her. Nothing else mattered.
So many times, one of the doctors or nurses told me they did not think she would make it. Don't get me wrong, the doctors and nurses for the most part were incredible and supportive. They had to be honest though and some moments were extremely hard to deal with.
The Nightmare Inside The NICU
As a parent, watching your helpless baby suffer and knowing there is nothing you can do, is the absolute worst feeling. The only feeling worse than that is knowing in your core that your child is suffering because of you.
Oh trust me, the doctors, the nurses, the friends and family all tell you it was not your fault. It doesn't matter what they say. You live with this torment and just try to be the best mother you can in any way possible. You live through this nightmare and you try to be strong for your child. You have a good day and rejoice even though you are afraid to. You have a bad day and your world crumbles.
The worst part... the worst of it all were the times I sat at her bedside and watched as curtains would go up across the room around another baby's bed. Eventually the monitors would turn off and finally a devastated mother would come from behind the curtains and collapse on the floor, sobbing.
My heart broke for the mother each time I saw it happen. My heart broke for the baby who would never grow up. I watched and softly cried for them. I held Addison and loved her as much as I could while my soul silently screamed in torment. Each time I saw this happen you see, I couldn't help but wonder if and when this would happen to us.
As she grew each day, her father and I fell more in love with her. The love was amazing however, the fear was so painful. It was the kind of thing that could either make a bond between parents stronger, or tear them apart.
For awhile, I truly believed that this experience would make our bond stronger. Despite where we are at now in our lives, I still believe that we do share a bond of going through that situation together. We shared something so painful, that most people don't even have nightmares that bad. It did break me though and I was broken for a very long time.
Once Addison was finally well enough to come home, it was still terrifying for us. She was sent home with a central line and a very bad infection. I had to quit my job because she needed full time care and could not go to a daycare due to her condition. A nurse came once a week to check up on her but, it was mostly me dealing with it all by myself.
It was so scary to have her home and not have the nurses just a few feet away as I fed her and cleaned her and administered her medications. As scary as it was though, it was also amazing to finally have her home with us. And her father and I did our best to continue to give her everything she needed to grow and be healthy.
In the end, I think I suffered some sort of PTSD from the whole situation. I still felt guilty all of the time. It didn't help that Addison's father had the sister in law from hell at the time who made a point of telling me that her fathers entire family blamed me for what happened. I don't think that was ever true, she was just being mean, but at the time I took it personally.
Small things eased the guilt a bit from time to time. I ended up pouring myself into church and trying to surround myself with people who believed everything happens for a reason. As much as I tried to believe it, the only reason I could come up with was that I was a failure. And so I closed myself off to almost everybody. Everybody except for my daughter, the only one I stayed strong for.
Many years later I did finally overcome the guilt I felt. It took one person saying the right thing to me...
Addison's father and I were going through an especially rough patch. We could not seem to get along. He was being extremely mean to me. I had gotten to the point where I had enough of the fighting. I did not think it was right to raise your children to believe this is how adults should treat each other. I was spending time with a friend that day who could tell I was extremely upset. I explained to him that Addison's father and I were arguing and he was very hurtful towards me.
My friend responded that he did not see why anybody would want to be mean to me. "Because he hates me." I told him, "But it's okay, I know why and I still remember the exact minute I realized it."
I then told my friend a story about one particularly horrible night in the NICU. Her father and I had spent the entire day there so worried about her. She finally became stable and the nurses convinced us to to go home and get some rest. We called to check on her right before going to bed and the news was not good. We got in the car and headed back to the hospital to be with her. It was nothing new. We were always there, and when we were not there, we were calling to check on her. We often got up in the middle of the night and made the 45 minute drive back to the hospital just to be with her.
That night was one of the worst. After a few hours, the nurses convinced us to take a walk while they ran some tests. He and I walked to the parking garage and sat in the car for a little bit. That is when he looked at me and told me that if anything happened to Addison, he will kill himself.
That is the moment I completely hated myself. Not only did I do this to my daughter... I did this to his daughter. I did this to him. I hated myself and I knew he must hate me too. Every argument that came after that day, even when things were good, I knew was because he hated me for not being like a normal woman.
My friend listened to me, watched me choke on my words and begin to cry and he said the one thing I did not want to hear again. He told me it was not my fault. I immediately began yelling at him that; it was my fault, and I don't care how many people tell me it was not because I know the truth, and nobody could ever possibly understand unless they had gone through this themselves, and that is something I wouldn't wish on my worst enemy!
Overcoming the Pain
He looked at me after I finished my rant and calmly said "Listen." I held my breath and waited for the next thing that would most likely set me off. Instead he said something that nobody else had ever said to me. He said, "It had to happen like that." He continued, "Addy HAD to be born that way and go through everything she did because she is special."
She is special. As much as I wish she never had to suffer and our family never had to suffer, I knew he was right. It did HAVE to happen that way. And maybe, just maybe, it wasn't all my fault. It was just meant to be. That was the first time in six years I did not feel guilty for her premature birth. I did everything I was supposed to while I was pregnant. I listened to the doctors, I went to all my appointments and then some. There is really no known reason for what happened to cause her to be born early. The only thing that might have helped would have been if my doctor would have examined me the first time I went to her complaining of pain.
Baby Addison AlbumnClick thumbnail to view full-size
Addison will be ten in a month. She still has her "Addytude" and I wouldn't expect anything less. She is after all the child of the two most stubborn people I know. I have spent the last three years in a much better place mentally. Although I never took anything for granted when it came to her, I am finally able to enjoy life and being a mother without also feeling that terrible guilt constantly. She is special, she is amazing. All children are.
Current Addison PicturesClick thumbnail to view full-size
She is my miracle.
If you are a parent or know parent who is having a hard time with their child in the NICU, please remember to be patient. Be strong. Nobody can possibly understand the emotions that are being felt. This poem I found a while back really helped me a lot, even during the worst times...
How Preemie Moms Are Chosen
by Erma Bombeck
Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see-- ignorance, cruelty, prejudice-- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."
If you would like to read more about my experience in the NICU, please read my article "The Baby Incubator: The Innovation That Saved My Daughter's Life"
© 2019 Cristina Cakes