It was a sunny Monday afternoon. I waddled into my OBGYN’s office for my routine 37-week appt, expecting the usual check-up, belly measurement and “How’re you feeling?” conversation.
Dr. Martin had ordered a sonogram (unbeknownst to me) because my belly had measured a bit small at my 36 week appointment. When the sonographer handed me a torn sheet of notebook paper with Kate’s approximate weight – just under 5 lbs – I was surprised.
“Why is she so small?” I asked Dr. Martin when he came into the examination room. After all, my son had been almost 9 lbs when he was born – and we’re not really a petite family. Dr. Martin went on to explain that she’s probably just small or that the placenta isn’t giving her enough nutrients – and if the latter is the case, then we need to get her out as soon as possible. And so, an induction was scheduled.
On a cloudy Wednesday morning, Matt and I arrived with our bags packed to the hospital for an 8 am induction.
I was nervous about the induction. My first born had arrived on his own free will, so I wasn’t sure what to expect. I had heard horror stories about Pitocin (the drug they give you to induce labor) – about unbearable contractions and excruciating labors. And since the first was such an easy labor and delivery – almost unheard of easy – I didn’t know what I was in for. But surprisingly, the labor part ended up being even easier. The contractions were moderate, but doable, and the only “complication” ended up being a slight drop in my blood pressure when I got the epidural.
Before we knew it, Kate arrived – with a full head of blonde hair. But the excitement quickly faded to concern. As soon as she was born, I sensed a “mood” in the room. Because they had been concerned about her placenta, Dr. Martin didn’t give her right to me. Instead, he handed her to the delivery nurse who immediately started to examine her under the warmer.
I stared at her little squirmy body, crying and fussy – with that pink newborn skin – and I said, “She’s so beautiful.” I remember Sarah, our wonderful labor nurse, echoing my sentiment, “She is beautiful.”
I asked the delivery nurse checking her out if everything looked OK. She told me everything did. But there was an undertone to her voice. As Dr. Martin cleaned up, I noticed his eyes shifting frequently over to where Kate was getting checked. The nurses whispered. And once they finally handed her to me, bundled like a little glow worm to hold for the first time, Dr. Martin sat down on the side of the bed.
“You know how I told you that one of the reasons she may be small is because of chromosomal abnormalities?”
“Yes…” I responded, hugging my tiny newborn.
“Well, the nurse has noticed some characteristics typical of babies with Down syndrome. This doesn’t mean that Kate has Down syndrome, but we’re going to have a pediatrician come look at her.” He said a few other things, too, but I don’t really remember.
And with that, everyone left the room to give us some time with our new girl. This precious moment – the one that you dream about your whole pregnancy – where it seems like heaven and earth meet and all is right in the world – was suddenly filled with grief.
I told Matt that I knew she had Down syndrome. “I can just tell,” I said. Matt told me not to jump the gun. He said that he didn’t really see it and that Dr. Martin just said it was a precaution. “Let’s not worry until we know for sure,” he said practically. But I knew. And I cried.
The timeline escapes me now, but at some point, they came and got her and took her to the nursery. There, the neo-natologist examined her. In the meantime, Matt and I researched Down syndrome on our iPhones. What are the characteristics? How is it diagnosed? What does it even mean? We sat in my hospital bed where I had been eating Popsicles and rapping Salt n’ Pepa blissfully through contractions just a couple hours prior.
And before long, a tall, abrupt, middle-aged doctor came into the room. Sarah accompanied him. He greeted us, told us his name and title – and then, as quickly as he said hello, he continued, “There’s no good way to say this, so I’m just going to say it. Your daughter has Down syndrome.”
He went on to tell us what that means – what possible complications she could have because of it (50% have heart problems needing surgery, possible poor hearing and eyesight, he’s only seen one baby since 1987 be able to breastfeed, etc.) He then went on to share what follow-up tests they’ll be doing. Matt nodded and asked questions while I stared, blurry-eyed, counting the seconds until he would leave so I could have a good cry.
And finally, after what seemed to me like an hour of medical textbook speak, he left. And again, we were alone with our little girl who had already made such a profound impact.
The next few hours were a blur – but I do remember a great amount of love and comfort. Kindness poured out from family and friends and unexpected strangers who offered the most perfect words at just the right time. And I immediately knew that most importantly, my little girl would be loved. And not just by us – but by the people who love us. We have such a wonderful support system and that truly carried us through those first hours and days of grieving.
Later that evening, the family came to visit. Granddad was still in town and was able to meet his youngest great grandchild.
Our parents met her and held her – and held us.
And then came my sweet, blue-eyed boy. He looked at his new sister with great love. And then became equally excited by all the new “toys” in the room – the cabinets, the chairs, the fun bed that moves when you push its buttons. He was a great reminder that life goes on – even when the world seems to stop for a bit.
And we ate a Sonic grilled cheese together.
At some point, the family left.
Matt, Kate and I sat in the dim room – and I could barely keep my eyes open. Emotionally and physically exhausted, I was told in the middle of the night that Kate was going to visit the NICU. Common for small babies, she had a bit of jaundice and was having trouble maintaining her temperature. And so, I slept.
The next day, we visited our little one in her temporary home away from home.
We became friends with the NICU nurses. Brought outfits for her to wear. And started bonding with our new daughter, despite the cords that were constantly attached to her. Being so small, she wasn’t strong enough to eat on her own, so we had to bide our time until she could grow stronger and go without the feeding tubes.
Almost three weeks later – and 1 lb heavier – she was released to come home. Just a day before her due date.
And here we sit. She is curled up on my chest, sleeping soundly – my own personal space heater. As I write about the grief and sadness we experienced, it’s amazing to realize how quickly that fades away. By connecting with other families who have experienced similar things – and just by getting to know Kate – we’ve learned that our situation is far from one to grieve about. In fact, many would say we are lucky. We are certainly just starting this journey – and I’m sure there will be challenging days, as there are with every child, in every family.
But we live for today. And today, we are enjoying our little snuggle bug – who is already doing great things in this world.