This is Miranda. She was born at 26 weeks and 4 days at Randall Children’s Hospital in January of 2013. She was born early because of Preeclampsia and HELLP syndrome and weighed 1 lb. 2 ozs. at birth due to Intrauterine Growth Restriction (IUGR). We discovered Miranda wasn’t growing on schedule at our 20 week ultrasound, but I wasn’t exhibiting any of the typical symptoms for Preeclampsia, so we were slow to accept that she was more than just small compared to other babies of her gestational age.
We tried to remain optimistic and confident that she would be born healthy and at full-term, but each week without answers made it challenging to not become more and more anxious. I remember clearly waking at 4am the day after Christmas so we could travel back from Seattle to Portland. We had an amniocentesis scheduled that we hoped would give us more concrete information about her condition but prayed the test wouldn’t reveal genetic conditions that could limit her periviability. I had this image in my mind that the needle would be like a bubble tea straw and that it could hurt Miranda, but the procedure was relatively easy and not nearly as scary as I expected.
There were many challenging things about being in the NICU, but I think one of the hardest was trying to manage other people’s expectations and understanding of her hospitalization. Because she had a relatively uncomplicated experience in the NICU, so many people, both friends and family, tended to focus on the fact that we were lucky she survived. My in-laws would tell me she was a miracle and ask if I was, “just so in love with her.” I think they wanted me to be overflowing with emotion— gratitude, and relief that she was mostly healthy. What I don’t think they understood then, and probably still don’t to this day, is that I didn’t want to think about her ever having been close to death.
I couldn’t manifest a lot of emotions that were visible on the surface, especially not happiness, because if I allowed myself to get too happy, it would easily cross over into a great and deep sadness that was hard to control. I feel like my emotional wires were crossed for a long time after the NICU, and moments of gratefulness or relief would bleed into a profound sadness for what Miranda had to endure with being born so early, and all our fear and anxiety during her 80 day stay.
I tried really hard to overcome these challenges by keeping a detailed journal of her days. Peter and I kept track of her milestones, the questions we asked staff, and feedback we received. I also started a support group for RCH families before we were discharged and would walk the halls posting notices about the group on each door— hoping to find other families to connect with. Connecting with other families normalized our experience and created a community of people that understood all the acronyms, accepted our fears and concerns, and validated our feelings. If it weren’t for those first families who accepted me and helped support me, I might still struggle with crossed-wires, but time and community have helped me heal.
I find now that we’ve been home over three and half years that I feel inspired by my NICU experience and the way Miranda overcame her challenges. I’m really glad to be a part of NFNW because I’m continuously inspired by the strength and determination that our children are born with and the courage and love their parents give them from day one. NICU families are unlike any other families I know, and I would have never wanted to be one— but I am truly proud to be one.
Anyone who knows me knows I’m nearly incapable of giving just one piece of advice or offering one message of support… I’m not really familiar with Eckhart Tolle, but he once said, “Whatever the present moment contains, accept it as if you had chosen it.” I feel like that’s excellent advice for NICU families because the longer we dwell on what might have been, the less we can appreciate all that is given to us in the form of our beautiful, incredible, wonderfully special NICU children.