#30DaysofHope Day 14- Our Journey To Leo
"You're having a boy" quickly turned to "Your baby is measuring extremely small for his age" at our 20 week appointment. My husband and I had tried to get pregnant for two years, and after a successful first round of IVF I'd naively thought our biggest hurdle was behind us. I silently cried through the ultrasound and follow-up discussion with our OB. We left the office deflated, with a referral to a maternal fetal medicine clinic and a grim outlook. In the parking lot, I remember being struck with a clear realization that our baby was going to make it. Call it intuition, faith or blind hope, I did my best to cling to that.
The weeks that followed were gruesome. We lived in short sprints between bi-weekly, then weekly, then twice-weekly monitoring appointments. Each visit was fearful and hopeful in one. I exhaled when I heard our baby's heartbeat and tensed back up when I learned he was measuring even further behind. His diagnosis ended up being severe, early onset growth restriction caused by placental issues. Our doctors prepared us that we could lose him at any time and mentioned terminating the pregnancy more than once, sharing stat sheets with bleak survival rates and long-term effects of prematurity. Later, I reluctantly ended up having an amniocentesis after another doctor raised concerns about a rare, fatal condition called triploidy. Luckily it was a false alarm. Through it all, we were steadfast in wanting to give him a chance.
At 28 weeks, my water broke shortly after going to bed. I woke up saying "no-no-no" over and over again, because it was still way too soon. We didn't even have an OB at the time, because ours had recently told us our baby was going to be too small and high risk to be cared for in the Level 3 NICU at the hospital we'd originally picked. Luckily there's a Level 4 NICU in our area, so we called that hospital and started driving there ... birth plan already long-abandoned.
I remember swinging between peace and panic over the next four days at the hospital. I wrapped up work projects between steroid shots to help mature our baby's lungs for early delivery. I provided cautiously optimistic updates to friends and family before gritting my way through a magnesium drip to help prevent brain bleeds. I meditated before falling asleep sitting upright because it was the only position his heart rate wouldn't crash. And then, in the middle of the night, a team of doctors walked in and asked if we were ready to go to a birthday party. I was and I wasn't.
Laying on the operating table, I heard the feeblest whimper as our son was lifted from my body. But it was enough, because I knew he was still alive. I waited for what felt like a lifetime, hearing the buzz of a team of medical professionals working to save his life. Trying once, twice, then three times to get a breathing tube in his tiny 1 pound 10 oz body. I caught glimpses of my poor husband drifting back and forth between his wife and son, helpless with both. And then, finally, they wheeled him quickly by me in an isolette and said to say hello. I couldn't even see his tiny body amid all the blankets and wires and probes. Minutes later, in recovery, a nurse handed me a breast pump and I began my love-hate journey of exclusive pumping. Alone, in shock, but determined to do whatever I could to help my baby survive, I pumped.
Hours later I saw our son for the first time, and it scared me. I cried out of grief and fear, but I also fell in love with him. Our dear, sweet, tiny Leo. The first day was impossible to fathom, and to say I was a wreck is gentle. And then, another moment of clarity: I had to be strong for him. I had to surround him with love and positivity. I had to advocate for him. And so I got to work.
A day or so later I got to hold Leo for the first time. There were lots of rules and it was terrifying. But the second the nurse tucked his teeny body onto my chest, we both melted. His oxygen levels went up and my anxiety went down. And from then on, those daily skin-to-skin moments were what got me (and maybe us both) through.
Leaving the hospital without Leo for the first time was unimaginable. But leaving him every subsequent night for a total of 89 days was increasingly heart wrenching. Especially on the bad days, the days he was sick or in pain, the days after he had surgery or when he got an infection and had to be re-intubated and we were waiting to find out if it was just bad or life threatening. I watched him at night on a webcam, crying tears in bed at home 20 miles away, and called in for updates from the overnight nurses. We each slept with a small scent cloth that I switched out every visit ... so he could smell me and I could smell him. It felt so sad, but it was all I had and the only way I could leave a piece of me with him at all times.
And then, somehow suddenly even though it'd been 3 months, Leo was ready to come home. A joyful light at the end of the tunnel, and the beginning of new challenges and chapters to come.
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Thinking back, we met everyday heroes along the way. My husband and I's favorite nurse, who pushed us past our fear and into taking an active role in Leo's care. An occupational therapist, who helped us understand the right ways to read his micro signals and coached us through bottle feeding once he was strong enough. And one of many neonatologists who helped him through delivery, his first hours of life and beyond.
If fear is central in a high-risk pregnancy, it's visceral in the NICU. From the time we learned Leo was growth restricted, fear was an impulse. But almost immediately, other feelings settled in, too. Hope, determination, grit. In my experience, you should latch on to these tightly. Hope can help keep fear at arm's length. Determination can give you positive purpose to focus your energy around. And grit can help you get through one day at a time.
Some of the best advice we got was from that favorite nurse who told us not to buy ourselves future problems. And that is so true. One day, one challenge and one tiny victory at a time. It's all you can do. And then one day, hopefully, you'll exhale. And you'll get to take your baby home, and you'll find your new normal, and maybe you'll even start to appreciate all you went through and who you've become. A year later, I still whisper in Leo's ear almost daily that he's my miracle and my blessing.
I'll close with a quote I found inspiring while we were in the throes of our NICU journey. "I see your fear, and it's big. I also see your courage, and it's bigger. We can do hard things." - Glennon Doyle
Good luck out there, mommas.