MomsGetReal™.com is proud to have MomPower Contributor Wanda Morrissey sharing her story with our readers. The challenges faced by preemie parents require extraordinary strength, unlimited optimism, and undaunted courage. We’re grateful to Wanda for helping all of us understand this journey through motherhood. For more information about premature birth and Preemie Awareness month, please visit the March of Dimes.
The doctor took us aside and showed us the x-rays, they were almost all black, there should have been white patches to indicate pockets of air. She told us that all of his feeds had been stopped and that he was getting five different antibiotics as well as all of his nutrients through an IV. She said they hoped they’d caught it early enough to get it cleared up quickly but if his condition didn’t improve then they’d have to perform surgery to remove the part of the intestine that was infected. I was hearing her words but they weren’t sinking in. I think she realized this and sent Kent and I to the family room to look up information on the hospital’s website. The first line read ‘NEC is almost always fatal…’
I got as far as fatal and couldn’t go any further. I couldn’t read through the tears. I felt Kent reach for me and pull me close, he was crying too. Had we come this far only to lose our son?
We went back to sit by his incubator. His stomach was swollen because of the infection and he looked as frail and weak as he had when he was born. I was numb; the constant emotional ups and downs were getting to be too much. But as he had from the beginning, Jeffrey fought back and by the next day was already showing signs of improvement. Within the week he was back to his old self.
Friends of ours weren’t so lucky. We’d become close to another couple in the NICU. Their son was in the incubator kitty corner to Jeffrey’s. Our boys were close in age and we’d experienced a lot of the same things. We were even planning trips to visit each other during the summer and had already decided that our boys were going to be the best of friends. Shortly after Jeffrey got better their son caught NEC. He didn’t react well to the antibiotics and needed surgery.
Despite surgery the NEC spread and a second surgery was performed, then a third. Most of his intestine was now removed and he still wasn’t getting better. His parents made the difficult decision to let him go. That was a really hard time for Kent and I. We felt their loss almost as keenly as if it had been our own. On the other hand we were glad that it wasn’t Jeffrey. That made us feel worse. How could we be so selfish when our friends were experiencing the worst pain of their lives, which just started the cycle over again. We’ve since lost contact but I still think of them now and then.
Along with the infections, blood transfusions and NEC, there was also the vanishing heart murmur. Some of the doctors and nurses could hear it and others couldn’t, some days they could hear it and some days they couldn’t. It was very frustrating. No one could agree on what it was and so they couldn’t agree on a form of treatment. I told them that I’d been born with a heart murmur but that it had healed itself before I’d turned five, could it be genetic. My question was brushed off. They were concerned that it was PDA (patent ductus arteriosus). PDA is a condition in which the blood vessel that connects the aorta and the pulmonary artery doesn’t close as it should after birth. If it was PDA then he’d need surgery to sew the vessel shut. It was debated for so long that the murmur went away on its own. To this day we still don’t know if it was PDA, genetic or a figment of someone’s imagination.
At the end of February there was a lot excitement around the NICU. A benefit concert called One Night Live was being held to help raise funds for a new NICU. Performing at the concert were Jann Arden, Sarah McLachlan, Josh Groban and Bryan Adams. The president of Dräger, the company that provided the NICU with incubators, bought a block of tickets and gave them to the NICU. They were to give the tickets to parents whose children were the sickest. Kent and I were given a pair of tickets. The tickets came with mixed emotions. We were grateful for the tickets, it promised to be a great concert but we didn’t like the reminder that our son was considered one of the ‘sickest’. We also felt guilty. We felt guilty because we were going to travel to the city to see a concert instead of seeing Jeffrey. Friends, family and even the nursing staff all told us not to worry about and go to the concert. They said we had earned a night out and to go enjoy ourselves. We debated it up to the last second when we finally decided to go to the concert. I’m glad we did, it was a lot of fun and I heard a song that has since become my favourite. Sarah McLachlan sang ‘Ordinary Miracle’ from the Charlotte’s Web soundtrack. The lyrics seemed to fit so perfectly with what we were experiencing. I was tearing up listening to it. I loved the song so much that I used it as the background music for the video I made chronicling Jeffrey‘s first year.
Jeffrey was eating well, although still tube fed, growing and gaining weight but still his breathing was an issue. He was still taking apnea spells and his oxygen levels were up and down. If he would breath more on his own then that would level out his oxygen levels. There wasn’t much we could do about the apnea spells except to hope he outgrew them. As we entered the month of March we were told that Jeffrey had chronic lung disease (CLD). Children who need to be ventilated for more than 28 days are diagnosed with CLD. Jeffrey had been on a ventilator (a machine that controls airflow in the lungs) from day one and it was decided that something had to been done. The doctors were afraid that he was becoming dependant on the ventilator. They started giving him caffeine shots to stimulate his lung function. The caffeine seemed to help some but not enough, the doctors decided to try and force him to breathe on his own. They took him off the ventilator and put him on CPAP (continuous positive airway pressure). The CPAP would provide a constant flow of air but it was up to Jeffrey to breathe it in and out. The CPAP consisted of a halter that went over his head and held a breathing tube over his nose. It reminded me of the headgear worn by fighter pilots. Jeffrey did not like the CPAP. He was constantly trying to pull it off his face. Kent and I thought that it was funny, the nurses didn’t; they were constantly fixing it. He had learned how to pull out his breathing tube when he was on the ventilator so now he wanted the CPAP off as well. Finally he was showing some improvement in his breathing.
Wanda’s story will continue as MomsGetReal™ dedicates space to Preemie Awareness Month.
