Life After NICU- The New Normal

I have been a NICU Mom four times. By the fourth time, I considered myself a pro. I knew the ins and outs, knew the schedules, what I could and could not do, what options were available for me in the NICU- I knew it all. What I didn’t know is how much different life after having had an extended NICU stay would be like.

My first daughter was born almost 8 years ago with two congenital birth defects. The combination gave her a less than 1% chance of surviving any surgery. My husband and I made the single most difficult decisions of our lives. We chose to withdrawal care and let her pass away peacefully in our arms. She was with us for only 3 short days but in NICU time it felt like months. The following months were complete torture. I relived every moment of those three days. I was stuck in a state of grief for 8 months. I didn’t have a baby to care for at home, all I knew was this raw emotion of isolation.

When my husband and I decided to try again, we were shocked to find out we were expecting twins. Our twin girls, Grace and Lily, arrived 6 weeks premature. Grace needed no additional support while Lily suffered from bradycardia and slight breathing issues. Our NICU stay was brief; leaving after two weeks. Lily came on an apnea monitor because of her heart slowing when nursing. That monitor was a machine to wake the dead. In the middle of the night, its siren would beep like a freight train warning people of its upcoming arrival. The twins thrived at home and Lily was cleared from her monitor after a couple months. We were automatically enrolled in the Early Intervention services through our state. Early Intervention (EI) is a focusing on helping babies and toddler with developmental delays or disabilities. The twins were assessed and needed little intervention. Lily suffered from torticollis and required a couple sessions of physical therapy.

As the girls turned one, my husband and I found out we were pregnant again. To our dismay, I suffered from two rare and potentially fatal pregnancy complication. I was told I would likely lose the baby, but if the pregnancy would continue the baby, as well as myself, would face an extensive intensive care unit stay. Our son grew in my womb and surprised even the doctors. His placenta was attached to my cesearn section scar on my uterus and as it stretched the placenta needed more nutrition and essentially branched out of my uterus and attached to my bladder. At a little over 32 weeks, my uterus completely ruptured. I was put under complete anesthesia and awoke to being on a ventilation machine. My son was on life support in the NICU. I found myself back in this battle zone nut more comfortable with my surroundings. I was unable to see my son for the first two weeks of his life due to numerous complication and infections I suffered during his birth. To this day, I have no reallocation of those first couple weeks of his life. BY the time I was able to hold him, he had a feeding tube placed and was on oxygen. He was doing well, just needing some assistance here and there. After 3 weeks, he was able to come home. This time I felt overwhelmed. He came home on an apnea monitor for his bradycardia and apnea episodes. He had his NG tube removed the day before and wasn’t eating well. He vomited after every feed. He cried more than any baby I have ever known. He was fragile and for the first time I was afraid of being a mom. To say the transition from NICU to home was an adjustment would be an understatement, it was a new kind of normal.

Stephen was home for a month when he could not hold down any feeds at all. He was making strange gurgling noises, but I didn’t think anything of it. I was feeding him an once an hour and he was always vomiting it back up. It was 5am, I hadn’t slept all night and neither did he. I had changed the bassinet sheets 6 times, my clothes three times and him about 10. I had enough. I packed him up and my husband and I drove down the hospital. Low and behold we found out that Stephen had actually contracted RSV and was suffering from it for some time. He also was allergic to the formula he was on and was changed to an elemental formula, which broke down the elements in the formula so his little body didn’t have to. After a couple weeks, we were back at home and found ourselves in connecting back up with EI services. Stephen needed occupational therapy to learn how to drink and eat and received physical therapy and a helmet for torticollis. By the time he turned one, he seemed to be growing perfectly.

I enjoyed having a boy in the mix of our twin girls. It was fun. I loved every single second of watching him grow. As Stephen turned 30 months, he started showing signs of speech delay and physical setbacks. He didn’t talk, he barely walked and could not run. I called our EI coordinator right away. After a couple months of barely any improvement I was told to call a rehabilitation physician, otherwise known as a Physiatrists. Within one meeting, the doctor was able to tell us that there was in fact more going on with Stephen than we thought. An overall low muscle tone or hypotonia, prevented him to be able to walk well, run and even talk. His mouth muscles were severely premature and inhibited him from forming words. He also had dysphagia from the hypotonia which is difficulty swallowing and my almost 3 year old drooled more than a 6 month old baby. He had obvious signs of hip dysplasia from not walking correctly and hyperextended his knees which could lead to further injury. The doctor suggested Stephen be placed in an intense program of various therapies. It was at that time that I had broken down. I tried to long for so hard to make him “okay”. He overcame his prematurity yet still suffered from all of these effects as a result of it. We went to therapy 6 times a week, sometimes leaving one therapy to go to another. He needed corrective braces which would help teach him to walk properly. After 7 months of intensive therapy, we had to pull him out of the program. I was diagnosed with Stage IV breast cancer that required weekly chemotherapy infusions among other appointments.

Nearly two years later, I am happy to report that he continues to amaze me. Since he was no longer receiving physical therapy, we enrolled him in Karate and swimming.  He receives speech therapy weekly and even started pre-school this year. Stephen is able to walk with no assistance and has even started running! He taught me how to fight to live and it is because of him and my other NICU babies that I am able to have a smile on my face despite my own diagnosis. It may not be today, and it won’t be tomorrow but I know one day he will be just fine . . .

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