Neonatal Intensive Care Awareness Month Part II: Joey’s Story

 

Because of the rush into surgery and due to my platelets being dangerously low, I wasn’t able to have the full anesthesia normally given to a woman having a c-section. To help combat the pain, I was given a morphine button to press when needed. My memories the first several hours after surgery circle around pushing the button. I wasn’t out of the woods yet, and at one point my blood pressure apparently dropped dangerously low. I don’t remember that part, but I remember being told to stop pushing the button. A little while later I remember the doctor checking on me and when I told her I was uncomfortable, she told me to go back to pushing the button. Despite the strong narcotic haze, the clearest memory I have was seeing my boys for the first time.

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When they wheeled my bed by the two isolettes, Joey was the closest to me. I was shocked at how tiny he was. Only weighing 1lb 12oz, the one pound difference in the size of the twins was staggering. Had we gone longer into the pregnancy, Joey would have been given a diagnosis of intrauterine growth restriction. Whereas Connor continued to grow, Joey stopped roughly at 25 weeks. Ashamed as I am to admit this, had I been told that night that only one of my boys would survive, I would have assumed that Joey would have been the child I lost. I was scared of how little he was.

One of the transfer team nurses told me that I could touch Joey. Nervously I reached my hand through the isolette window and touched Joey’s little hand. He looked so frail I was afraid of hurting him. Joey’s tiny hand wrapped around my finger and squeezed it tight as if to say, I got this mom! Joey’s strength amazed me at that moment and would continue to amaze me throughout his journey.

Just shy of 27 weeks, my blood pressure started to rise. I was on spring break from teaching and had just come home from a trip to my parent’s house in Ohio with a quick stop at the beach. I pushed off my endocrinologist appointment to the last Friday so I could make the most of my vacation before spending the weekend prepping for the last quarter of the school year. The endocrinologist was not happy with my blood pressure reading and quickly called my OB. Since it was Friday, the office was closing early so I was told to go straight to labor and delivery to get checked out. The quick trip ended up being a weekend long hospital stay ending in bedrest. I would not be allowed to return to work after that weekend. I didn’t know it at the time, but a week after the twins were born the on call doctor confessed that she thought she was going to have to deliver the twins that weekend. She couldn’t believe that my labs were fine given the elevated blood pressure and the never ending headache. Keeping me in the hospital that weekend, she was able to give me two steroid shots to help with the lung development of the boys just incase they were born premature. Her actions that weekend allowed both of my sons, even itty bitty Joey to not be ventilated after being born. Joey’s tiny size allowed for the medicine to hit him hard and benefited him greatly.

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The twins were a week old when I was finally allowed to hold them. I held Connor first, and then went over to Joey. Our nurse warned us that based on Joey’s size, he may not be able to be out of the isolette for long. It would be necessary to check his temperature to make sure he wasn’t getting too cold. His little eyes blinked in surprise as he was put on my chest, then he quickly curled up and fell asleep against my heart. His temperature was fine and I was able to hold my little guy on my chest for over an hour. Tears of happiness fell from eyes as I sang softly to him.

Joey’s resident our first month was an amazing doctor just a few months shy of the end of her residency. We adored her. Such a big heart and we could tell that she will have a great career wherever she ended up. When we lost Connor, she came into the room and cried with us. We could tell his death impacted her very much. With doctors and nurses, I’m always amazed at their composure and ability to stay strong to comfort a grieving family. It takes a special person to work with sick babies and kids. As a mother, I am grateful for these angels.

When we lost Connor, there was a moment where it felt as if the walls of the NICU were closing in on me. I couldn’t breathe, I couldn’t see. I was afraid I would pass out so I turned to Dave and said I needed to leave. I couldn’t handle being there. So we left. I’m embarrassed that I ran out and left Joey. I know people will tell me that he wasn’t aware of what was going on, but I don’t know if I believe that. I think with twins there is a strong bond that can’t be understood. I feel that he was more aware of what was happening than anyone thought. The grief of losing my son was joined by the grief of abandoning my other son. That evening we came back to the hospital and I made a promise never to abandon my son again.

It would have been easy to fall into darkness after losing Connor. Tiny Joey reminded me that I needed to stay strong. He needed a strong mother to be there for him. His strength and will to live became mine. Not many people are lucky enough to meet a super hero. I gave birth to mine.

Joey’s resident nicknamed him ‘Nugget.’ About ten days after losing Connor, Joey decided to tell us he wasn’t feel well by not breathing. We were getting ready to leave the hospital for the night when his machines started beeping and he began to turn blue. Crying I watched as they revived him and the neonatologist on-call explained that to give his lungs a rest, they were going to put him on a ventilator until they could figure out what was going on. What didn’t help was the neonatologist on-call was the same neonatologist who told us that Connor wouldn’t make it. I began to cry harder as they hooked Joey up to the ventilator, started him on antibiotics, and ran several blood labs on him. Joey proved once again that I should never doubt him and after only a few hours on antibiotics his color returned and he was trying to pull his ventilator off. At about 11:30pm, we overheard a phone call at the nurses station. Our favorite resident was calling to check up on her nugget since she would breaking her programs rules by staying in the hospital. Soon we would learn that she called him nugget because she was convinced he was smaller than a 20 piece McNuggets at McDonalds!

After only two days Joey was able to come off of the ventilator and became a “feeder and a grower.” Despite the need for a few blood transfusions, the remainder of Joey’s two month stay was waiting for our kiddo to be big enough to come home. Everyday I would drive across town and hold my son, fortunate that our areas level III NICU was only a short drive from our house. Joey was super feisty and would get crabby when he was moved out of a comfortable position. His goal seemed to pull out all of his tubes and our night nurse nicknamed him ‘crabby and grabby!’ When Joey was able to take a bottle, keep his temperature stable, and breathe without support, it was time for Joey to get to come home. Weighing only 4lbs and 3oz, hooked up to an apnea monitor, and just one day shy of his two month birthday we were able to bring our nugget home.

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