My husband and I were the couple who received the abnormal diagnosis that miraculously cleared up two ultrasounds later. Between ultrasounds three and four, we’d accepted our fate. While we didn’t want our son to be “abnormal”, we knew we couldn’t expect God to hand us miracle after miracle. We knew at some point it was our turn to stay in the muck and mire. And we also knew God would not give us more than we could handle.
“Baby boy is healthy! While we’re grateful for this last ultrasound’s results – no more echogenic bowel – Kevin and I feel, again, as though for some reason we barely squeezed by on the ‘good side’ of a bad situation while so many others do not. We are not immune to struggle, to tragedy, but here we are again. Who are we to deserve saving from strife? I never anticipated the level of survivor’s guilt I’d feel post-NICU with our daughter. And I never thought I’d feel it again with kiddo #2. Blessed, lucky… I don’t know what to call it, because I know neither would sound fair to those who are ‘less fortunate’…
We were at a place where we were praying for who/what our child would be, not against what he might face. We were, in a weird way, ready, but now we’ve been spared again. I don’t know why…”
In 2017, amidst an incredibly tumultuous pregnancy, my husband and I had been prepared to deliver a potentially terminally ill baby. We held on by a thread for 35 days before delivering said baby at 27 weeks and 5 days gestation, 12 weeks and 2 days shy of a normal, 40 week pregnancy. And then our daughter joined 7 other babies fighting for their lives in Area 11 of the NICU of our local children’s hospital.
For 69 days, we watched Oaklee’s roommates come and go. For 69 days, we envied the parents who were ushered in alongside 5, 6, and even 7 pound babies – those who needed little to no respiratory support and those who would be going home in a matter of days. For 69 days, we gave jealous smiles to the parents who brought in their car seats and prepped their babies for a homecoming. We wanted that good thing for us, too, and we eventually got it.
But in those 69 days, as our daughter got better and better, our hearts were wrecked for Oaklee’s roommates, too.
Shortly into her stay, we watched a baby come and go for multiple surgeries while his young, unmarried mom and dad struggled to be there to support him. Our hearts cracked open when we listened to his grandma sing Jesus Loves Me as his tiny body clung to the life Jesus gave him – Little ones to Him belong. They are weak, but He is strong – was he not among the littlest of the little ones?
As Oaklee’s stay spanned days, weeks and eventually months, our broken hearts broke further for the families of the babies who had been admitted far before Oaklee and were still there. We began to know their names, their stories, if not from the run-ins in Area 11 or the pumping room or the cafeteria, then from the overheard conversations of nurses. Was there a light at the end of their tunnel?
And on the final day of Oaklee’s NICU stay, we entered Area 11 drunken with happiness but quickly sobered up, becoming flies on the wall as we silently watched every parent’s nightmare unfold. Why them?
I was 27 years old. I’d felt that God had brought us to the border of death only to bring us all the way back to health and happiness and “normalcy”. He gave us everything we wanted and prayed for in a situation where statistically we should not have gotten everything we wanted and prayed for. I was 27 years old, and I was facing my first bolus of survivor’s guilt.
I didn’t just passionately want the good thing for my daughter. I wanted it for her 7 roommates, too. And for the 70 other babies in that NICU. And for the other 15 million babies born prematurely every year.
I have no regrets for praying hard that God would heal my daughter – that He would make her not just survive, but thrive. Like any parent, I wanted the best for her even when it felt like that meant relying on a miracle. Our miracle came true. And while I prayed for the babies who occupied the 7 other isolettes of Area 11, I can’t say the same for all of them.
And I don’t understand it.
Then, just two years later my husband and I were the couple who received the abnormal diagnosis that miraculously cleared up two ultrasounds later. Between ultrasounds three and four, we’d accepted our fate. While we didn’t want our son to be “abnormal”, we knew we couldn’t expect God to hand us miracle after miracle. We knew at some point it was our turn to stay in the muck and mire. And we also knew God would not give us more than we could handle. We were ready to love our son. We were ready to let him be a light in this dark world in whatever fashion that might look like.
But we were spared again.
And I don’t understand it.
At 29, my second bolus of survivor’s guilt.
God, I want the good things for us all.
In the stats:
Gestational Age: 26 weeks, 5 days
Doctor’s Appointments: 9
Makena Injections: 10