The Birth of NICU Stories
I was working for an IVF Clinic when I brought my concerns of the golf ball-sized clots I was passing monthly, to a trusted Nurse Manager. After an examination, I received some scary news from the Medical Director. I had multiple uterine fibroids.
The fibroids were the size of a grapefruit, an orange and multiple golf balls. I had to go on Lupron injections to shrink them prior to myomectomy surgery. Post-surgery I was told I wouldn’t be able to conceive children on my own. I would have to have infertility treatments.
Well, God had other plans. After being married a little over a year, I took a pregnancy test and BOOM. We were pregnant on our own.
There was a fibroid near my baby’s head that would need to be monitored. After weeks of a painful pregnancy, I went into labor at 23-weeks gestation.
It was the most terrifying experience.
This journey was full of surprises from moment one. I had thought that I was barren. Yet, I conceived naturally without treatment. I had thought pregnancy would last the expected 40 weeks, give or take. Yet, I only made it just over half-way prior to going into labor.
My daughter was born 1lb 6oz. She was diagnosed with chronic lung disease, a brain bleed, a heart murmur and soon developed necrotizing enterocolitis.
It was hard enough to leave my tiny baby in a hospital alone 45 mins from home, but to hear all of these medical issues that she would carry was beyond stressful.
She was intubated for longer than they had hoped. We were told she was asthmatic and would come home needing a ventilator. She was given a steroid to strengthen her lungs to remove the intubation. I was told that learning disabilities would be apparent once she was about 5-years old, because of the steroid.
After 3 months in one hospital and 1 month at a hospital closer to our home, she came home completely breathing on her own. (Also, to this day she is above grade level in reading and math!)
I found myself content with just having my daughter. The NICU was traumatizing. Even though my miracle baby came home unscathed, I was afraid of experiencing it again.
Well to my surprise again, I got pregnant again.
This time I went full term. Like my daughter, this baby also had fibroid buddies hanging out with him in utero. Weekly, I would see a high-risk specialist to monitor me and my OB in a separate office for progesterone injections. I stuck with it, desperately hoping to prevent another trip to the NICU. Due to the myomectomy procedure & the c-section, the specialist didn’t want me to go into labor, for fear I would rupture my uterus.
At 38 weeks, I gave birth to my son. All was well, at first! He latched on well. I nursed him. I enjoyed and didn’t take for granted holding him right after delivery. I loved spending those first few days with him. However, on day 3, when we expected to be discharged from the hospital, I learned he hadn’t passed his meconium. I was frantic. What did this mean? The doctors told me he may have Hirschsprung’s Disease and would need to be transported to another hospital to be tested. I was crushed and couldn’t stop crying. I didn’t realize NICU PTSD was real, but it is.
They took him to the same hospital my daughter was born in, 45 mins away from my home. Because I had a c-section, I couldn’t drive to see my son. I had to catch a cab or wait for someone to take me. My husband worked long hours and couldn’t be with me. But I managed.
The doctors informed me that the nerves in his colon were completely dead and he would need “pull through” surgery. The surgery was successful, and he came home just over a week later, on Christmas Day. Though his NICU stay was only a little over a week, it was so difficult.
NICU PTSD is very real and shouldn’t be taken lightly. I wish I had sought therapy and counseling, because I believe it definitely affected my transition from Mom of one to Mom of two. I didn’t seem to manage well with having them both. I needed to heal and process the trauma of having both of my children in the NICU.
My NICU experiences lead me to launch, NICU Stories Podcast, a space where moms, dads and couples can share their NICU Story and raise awareness of the NICU experience along with the medical conditions that can often accompany the NICU journey.
Some have found healing. Some have helped heal others. And some have found their voice sharing their NICU Stories. I pray my story is a blessing to those who read it.
~Nakiea, Founder of NICU Stories
