This is motherhood: A story of HELLP Syndrome + the NICU

We were so thrilled to get our baby home after four months in the NICU, but that was when the reality of everything that happened hit me.

This is motherhood: A story of HELLP Syndrome + the NICU

We had our first baby, Valley, in January of 2017—15 weeks early. I had been in the hospital for four days with extreme pain that we couldn't figure out until they finally discovered it was my liver failing due to HELLP Syndrome (H: hemolysis—breakdown of red blood cells, EL: elevated liver enzymes—liver function, LP: low platelets counts—platelets help the blood clot).

So, I had an emergency C-section at 25 weeks within five minutes of diagnosing me.

Then, we began our 4-month NICU stay where we watched our 1 lb 11 oz baby fight for her life. She was taken immediately after birth to be intubated and stabilized and we couldn't hold her until she was over two weeks old.

We watched for months while she endured transfusions, IVs all over her body, blood draws, eating almost entirely from a nasogastric tube, many days of fasting due to a bloated tummy, infections, ventilators, oxygen, and many other procedures… all on a tiny one pound body.

At first, I felt at peace knowing that everything would be alright. I think our calmness may have actually been shock, now looking back. I remember one day about three months into our NICU stay where our doctor said, "I think we can now say we are out of the woods" and I remember thinking… We just got out of the woods now?! I felt like my mind had only been processing the positive things.

We were so thrilled to get our baby home after four months in the NICU, but that was when the reality of everything that happened hit me.

The life or death stress—for me and my baby—was over, but the hard part was just beginning. I felt like I was finally experiencing all those emotions I felt like I should have experienced at the start of all of this. It felt what I imagine PTSD feels like. And I didn't think I could talk to anyone about it.

How do I explain these feelings after my beautiful, now healthy baby just got home? On top of that, my doctor had explained to me that women who develop HELLP Syndrome in their second trimester (like I did) have a higher chance of getting it with every pregnancy thereafter, versus if it had developed in the third trimester. I wasn't thinking about having a second baby yet, but I was already terrified of this happening again.

I didn't want to put my own mom through another night of not knowing if her own daughter would survive delivering a baby. I didn't want to wake up to anymore 3am phone calls from the NICU, thinking it might be "that call."

Valley was difficult when we brought her home. She wouldn't eat and she hardly slept. I think we had 50 doctor's appointments in a six-month span after she left the NICU—it was a lot.

I felt an internal struggle, too. I felt so much pressure to remain "optimistic." There wasn't a more grateful mom at that moment to be able to hold my baby in my arms. My heart aches for mothers who don't get that. But I felt like I never got even one second to grieve. Or struggle. But I needed to.

I started to become angry.

I forgot how blessed we had been. I got upset when I saw other people comforting moms with what I thought was "an easier problem" when I felt like I needed help. And then, one day, I thought again about those mothers who lost their babies. I may have had a baby at 25 weeks (which was so scary, of course), but what is even harder than that is losing a baby.

I thought if I was bitter about people with "easier" circumstances than me, imagine how a mom who lost a baby feels about me? I decided to make a conscious effort to try to change my thought process.

My incredible husband helped me understand that sometimes someone else's problems may seem easy to us, but that just might be the hardest thing they have had to endure so far. You can't compare. I wanted to help and love anyone struggling, and I needed a change of heart to do that.

My husband and I decided to do something about all of these feelings and all of our experience. We created an annual 5k race which we named, "The Littlest Valley 5k"—which marked the start of a healing process for me.

We donated the proceeds to a family in the NICU with a micro-preemie. We sobbed when we met the parents and discovered that their baby was the exact same weight, length, and gestation at birth as our daughter was. It was another reminder to me of the miracle our little girl is.

I am still learning every day how to process my experience, but I have been refined and taught (over and over) what true love is—all from my powerful, tiny miracle baby.

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