"Children's talent to endure stems from their ignorance of the alternative."
-Maya Angelou
If you are a parent of a preemie, there is a good chance that your child will one day be in surgery. I am the parent of a preemie (27 weeks gestation, 2 pounds at birth) and was asked to comment on emotions associated with surgery and preemies.
I thought for a long time about this subject and came up with a list of some of the feelings I felt.
Acceptance Agony Anguish
Discomfort Distress
Empty Expectation
Frigid
Grateful Guilty
Hollow Hope Horror
Impatience Impotence Incapacitated Intolerable
Jittery Jumpy
Listless
Nervous
Oblivious
Paralyzed Powerless
Remembrance
Resignation
Somber
Terror Threatened Timeless Tormented Tortured
Unprepared Unproductive
Weakness
My daughter had 5 surgeries. I am going to try to expand on some of the feelings I had and give examples. Like many other things associated with preemies, your emotions are going to be your own. Emotions are neither good nor bad - even anger has it's place.
The worst moment of my NICU experience was just minutes before my daughter's first surgery. My daughter had her first surgery (for NEC - intestinal surgery) when she was a little over a week old, she was 1 pound 14 ounces the day before surgery. I had been told that she would probably not make it through surgery. I finally tracked down the hospital Chaplain and was able to arrange to get a local priest to come baptize her. The hospital even let me hold her after the ceremony for about five minutes though she could not maintain her own temperature, was on two IV's and O2.
She was scheduled to go down to surgery the next morning. A little after midnight there was a call from the hospital. They had to go in now if she was going to live. They could not wait for the morning. I was staying at the local Ronald MacDonald House. They called the police and I was at the hospital five minutes later.
Though it has been almost three years now, I still remember the ride and the fear. I got to NICU just as she was being wheeled down to surgery. Outside the doors to surgery, I had to sign the consent. I felt as if I were signing consent for them to kill her. I knew she would not live without the surgery. He intestines had started leaking into her abdomen earlier that day and she was developing a bad infection.
The technician came out to get the transport module. I would not let her take it. I wanted to touch my daughter one more time. I couldn't bring myself to open the door. After what seemed like forever someone opened the door. I held on to her little hand and told her goodbye, maybe for the last time. I could not let go. The nurse gently told me they were waiting for her. The technician told me she would take care of her.
I went up to the NICU waiting room and cried for over and hour straight. One of Jessie's primary care nurses came out and told me she had just gotten a call from surgery because they could not find me in the surgery waiting room. She was holding on and the surgery was going better than they hoped but there were some complications and it was going to take longer than they had anticipated. I went numb. I could no longer feel. Everything was drained out of me.
After my daughter was back in NICU after her first surgery, they let me in to see her. She had been on O2 when she left for surgery. When she came back she was on the respirator. I expected that. What I saw after the respirator made me repulsed and horrified.
On my daughter's stomach was a clear bag. In the bag was what looked like a redish/brownish/purplish worm. Seeping from the center of the end of the "worm" was a green slimy substance. At the edges of the "worm" was a trickle of blood.
I looked up and there was an intern. I started yelling at him. I can't remember what I said but it was something like "what have you done to my daughter and what is that?" He said you signed the consent form it said she would have and ostomy. I said I knew she was going to have an iliostomey, but what is that?
Eventually I learned that an ostomy is a portion of the intestine hanging out of the body in a bag and that is where the waste goes. I also learned that she would have to go back in surgery to have her intestines put back together again at a later date. The consent form had said she may need more surgeries. I thought it was just one of those maybe this and maybe that sort of things. It taught me that no matter what, if you are not 100% sure of a word being used, ask! (I'm not a medical person myself and there were many more in the next three months)
After my daughter's fourth surgery (this one was to reattach her intestines),she had a very tough time in recovery. Her body temperature would not rise and they could not seem get her weaned off the vent. She would not wake up.
Finally after almost two hours in recovery, they broke the rules and let me see her. I was able to touch her and talk to her. They thought that they were losing her so they let me hold her. After I left recovery, she started perking up and they got her off the respirator. Once she was back in NICU they let me back in.
All of the sudden she started having problems again. They ended up getting a doctor who had never even seen her before to give an order for anit-narcotic drugs. This would counter effect the narcotics. They had given her. It worked. It worked too well. A baby down the hall coded and the doctor was taken away. It took 45 min. for them to get another doctor to see her and get some other pain medicine for her. In the meantime my 4 pound daughter was screaming in pain. She had literally been cut from side to side just 3 hours before and she had no relief from the pain. My agony and anguish was so overwhelming. I felt so helpless. I could not calm her and no one could calm me.
After about 30 minutes they finally had to get someone to pull me out of NICU. They also had asked all of the other parents to leave after about the first fifteen minutes but I refused to go. This was the second worst moment of my NICU experience. After I left NICU I went to the chapel and yelled at God. I told Him that if He was going to take her that He had better do it then. I could not and would not see her like that again. I also told Him that He was being cruel and she had been through enough. I had been taught growing up that God would not give us more than we could handle. I told Him then that He had gone over the line with both of us.
Like many mothers of a preemie I felt and still feel guilt. I wondered if there was something more I could have done so my daughter would not have been born at 27 weeks. If she had been full term, she never would have had to go through the pain and trauma of surgery. Then there are the scars. As I write this, my daughter is almost three. Some times when I am giving her a bath I can't help but wonder how she will feel about the five scars on her chest and the one that runs all the way across her stomach when she is 13. Will she hate what I did? (Yes, I did it to save her life and did not have a choice.) Will she wear a bikini like her friends or will she wear a one piece and a t-shirt to hide the scars?
Surgery brings many emotions. Most of them are not comfortable. But once it is over comes the peace. The acceptance that no matter what, you did what you had to do for your child. This was the best you could do. Unlike the rest of the NICU experience this one thing will quickly change the course of the life of your child for better or for worse. Although it feels like forever, it is only a few hours. You cannot DO anything. You have done all you can. Feel your emotions. Let them be.
poignantly shared by Christins Simmons,
mother to Jessica
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