NICU stays are, no matter how early or whatever issue your newborn has, always a little scary. I remember the first time I entered the cute, clean, well-organized, and quiet floor of the Golisano Children’s Hospital NICU Tower in the Strong Memorial Hospital here in Rochester, NY. I was being wheeled around in a wheelchair by my husband, largely and only 28 weeks pregnant, while a sweet nurse gave us the tour. I tried so hard to peek in the rooms where the curtains were open, with the little babies in their incubators. The whole time, I was thinking there would be no need to memorize all the things she was saying, that this place would never have any meaning in our lives. I found out in less than 24 hours after leaving the NICU that I was very wrong.
To some, 49 and 60 days might not mean anything. To us, it will always be remembered as a time where we waited, initially switching from room A to room B, crying by our little 14 and 15-inch-long babies in their little box of warmth and comfort, trying not to panic when any alarms went off in the monitors. It was a time where Johnny Cash’s cover of “Hurt” became my best and worst friend, and where I basically became a nurse without a degree. It was a time where I hated myself and couldn’t stand looking at my own reflection in the mirror because I felt like a failure, embarrassed by the fact I couldn’t carry them full-term. It was the first time I truly felt envious when I saw parents take their babies home, happy tears in their eyes, hugging the nurses that became family, accidental therapists, and a shoulder to cry on.
As I’ve mentioned in a previous blog, River was 2lbs 12oz, 15in. Lydia was 2lbs 4oz, 14in. They were small and very red, they had a lot of hair (I had so much heartburn while pregnant), their chest had a small sinking circle where their hearts and lungs were still developing. They had so many lines in their belly buttons, IVs on their little limbs, a feeding tube in their nose (River) and mouth (Lydia), cannulas in their noses. It was heartbreaking to watch them not be world-ready upon their arrival. When I went to see them for the first time, 10 hours after my c-section, I didn’t know what to expect. They were in rooms right next to each other, which started my “I have to make sure I spend equal amounts of time in both rooms so they know I love them both equally” obsession. Remembering the first time I walked in and saw them, I felt numb. I don’t think I smiled. I just remember looking at them and thinking I’m so sorry, baby. I remember looking at the big black monitor screen with three rows of different colored numbers and three different beeps – one for low breathing/heart rates, one for high breathing/heart rates, and one for Bradycardia alerts. That last one still goes off in my nightmares.
The second time I went to see them, I got to change River’s diaper. What a tiny baby she was. She wore the preemie diapers by Pampers, and she still swam in those. Lydia was so tiny, she wore the micro preemie diapers. To give you an idea, I can’t even close those over my hand.
I’ll never forget the night of December 23rd, 2016. Suzanne was River’s nurse for that shift, and she was a complete sweetheart. She casually asked me if I had already held her and done skin–to-skin with her, and my heart skipped at that question. I told her I hadn’t and that I had no clue that was a thing, and she smiled a really sweet smile and asked me, “Well, do you want to hold her?”
(Hold on, I have to get a tissue. I can’t ever talk about this without crying.)
I didn’t know what to do with myself. They were 5 days old, and I was about to hold them for the first time. I cried. I looked at my mom with the stupidest smile on my face and no words to accompany it, and my husband looked as if he had gotten the best news of his life.
She was so tiny. Her little body fit inside my nursing top, which had a shelf bra in it, perfect to hold her little bottom in place. I just wanted her to hear my heart beating, happy, and understand that I had been wanting to hold her for 5 days. My husband also held her, and she was really confused about his chest hair.
After we both held, talked to, caressed, and snuggled River, we kissed her face and put her back in her little glass box. She seemed really content.
We entered Lydia’s room next, and Suzanne had told Lydia’s nurse we hadn’t held her yet. And so we did, and we also got to feed her some of my breastmilk (a whole milliliter of it) via her feeding tube. Lydia also fit nicely in my nursing top, and I hummed to her and my heart told her how much we loved her, too.
We kissed Lydia’s little face and told her how much she meant to us, and put her back in her incubator. Christmas had come early for us.
After we held them for the first time, the whole parent thing felt real. We became parents. We love two tiny beings more than anything. HOW ARE THEY SO CUTE?!
We were having Christmas lunch with my parents, when my phone rang. It was the NICU. They had been trying to stabilize an infection Lydia was battling, and no antibiotics were working on her. They had to do labs on her, poked her with even more needles, drew blood for examinations, did a spinal tap on her. A spinal tap. On that tiny, little, fragile baby. They were trying to rule meningitis out as well as other bacterial and viral infections, and they just wanted to keep us informed. Lydia had had a long day and was tired, so she finally fell into deep sleep. She had lost some weight and they were just working to make sure there were no underlying problems. Her respiratory and heart rate had dropped a lot that day, so they were making sure she was ok.
We dropped our forks, got in the car, and headed to the hospital. We couldn’t hold her because she was exhausted and probably in pain, uncomfortable, so we just held her little hand and caressed her beautiful little face. I had never seen my husband cry before.
As her test results came back normal and a fourth antibiotic started to work, we breathed a little easier. Everything was fine.
We spent Christmas day and celebrated New Years with them in their little rooms. We didn’t care to go out or be anywhere else but with them and each other.
When we came back on January 1st, River was breathing 100% on her own. No. More. Cannula. She was 2 weeks old, 30 weeks gestation.
A few days later, the girls got transferred to the newborn nursery. That usually meant good news, but in their case, it was a transition phase. The main hospital’s NICU unit would be done with renovations in another week, and they’d be the first babies to call it their “temporay home”, being placed in the same room for the first time. It was the worst week of their NICU stay. The monitors were travel monitors, hence not that accurate. It would beep for Bradycardias when the girls were clearly fine. It would say they had stopped breathing when we could see their little chests rise and fall. It was the first time Rick and I had an argument in front of our babies, over who was more panicked over beeps and false readings, and how we were clearly not calming each other down.
When they were moved to the renovated NICU, it was beautiful. Big twin room, no need to split time in between different rooms. We were in room number 1. There, I met Anne, Lindsey, Nanette, Kristy, Lori, Ashley, saw Danyel again (she was the girls’ nurse in the Tower), and more amazing nurses whose names escape me right now. They became my friends, they would comfort me when I cried, rejoiced with me over little milestones the girls met, reassured me over little setbacks, and kept my feet on the ground. They also made me laugh, and a lot. They became family.
Nanette and Anne were the girls’ nurses when we walked in on January 15th, and Nanette’s smile gave away that something good must have happened. And something good did happen. Lydia was now breathing 100% on her own, at 32 weeks gestation and 3 days short of 1 month of life.
That was also the day I held them together for the first time.
Ups and downs followed, including their first eye exam. I thought I had enough time to pump before the doctors came in to do it, but I miscalculated. Their little cries and shrieks and screams were absolutely heartbreaking. It was the first time Lydia had a Bradycardia while I was doing skin-to-skin with her afterwards, and she had it 3 times. That kind of broke me. I drove home in tears, Johnny Cash telling reminding me that it was all my fault for not carrying them full-term, that I had “let you down, I will make you hurt.”
The girls’ doctor was very pleased with their development. He said he had never seen 28-weekers behave as my girls did. He called them “overachievers”, and that it was a great thing. The girls learned to breastfeed, thanks to Nanette for walking me through the whole process and having so much faith in me and my boobs. It was amazing. Then, they learned how to drink from bottles.
Nanette was also the one who took their feeding tubes out a couple of weeks later. One step closer to coming home!
The girls officially started their 7-day countdown. Every time they had a Bradycardia, it’d restart. They both restarted their countdown a couple of times, but were doing excellent and staying together. On day 6 of their countdown, Lydia choked while drinking her bottle and starting turning blue, unable to bring herself to breathe again. Her countdown started over. River came home alone on February 5th.
As excited as we were that River was coming home, we were heartbroken that we’d have to leave Lydia in the NICU, without her sister, until she passed her countdown. It was hard learning how to parent with one baby at home while setting time aside to go see our other baby in the hospital, just to hear she’d restarted her countdown again. It was really hard staying positive and keeping our heads up, daydreaming of having both girls at home.
And then we were asked to bring Lydia her car seat for a car seat test. And then she passed it. And she came home the next day on February 16th, 2 days before turning 2 months old.
This whole experience taught me that where there’s a will, there’s a way. Our girls were born 12 weeks early, and crushed every obstacle in their way, with no major issues or setbacks. They came home way before their due dates, with excellent notes from their doctors and nurses, with no oxygen or monitors, no medication other than iron and vitamin D, and with no “ifs and buts”. It taught me that size doesn’t mean anything. Our girls were tiny but mighty. It taught me the real meaning of motherly love, and that is beautiful.
And now, we’re almost 6 months into being a family of 4 under the same roof (5, if you count Zelda), and though it’d be much too easy to forget all of their NICU stay and all our girls went through, we choose not to. It made our marriage and bond stronger, and we’re much better parents and partners because of it.
I still don’t wish a NICU stay on anyone, though.
And, to any parent going through a NICU stay, stay strong. Your little ones are stronger, fiercer, and more impatient to come home to you than you’ll ever know.