Two years ago I shared with you the story of my twins’ birth. They were ten weeks premature and none of us were ready for them to come when they did. But they came. And even though their 7-week stay in the NICU was one of the most difficult times of my life, I am so grateful that they came and they stayed. Eleven and a half years later as I look back on those days, I see my two big boys and their three younger siblings and my heart overflows with gratitude–usually in the form of tears.
For those of you who are experiencing something similar, or for friends and family of someone going through the hospitalization of a baby or child, I thought I’d share some of my experiences and try to share some hope and insight along the way.
Bewilderment + Shock
I tried so hard to do things right. I took my prenatal vitamins religiously. I went to every appointment. I celebrated the growth of my twins as we saw them on the sonograms each week. A nurse told me to eat plenty of protein, so I snacked on almonds throughout the days, keeping large jars hidden in my classroom. I drank plenty of water and read What to Expect When You’re Expecting. I thought I was doing everything “right.” But when I ended up in the hospital with pneumonia and an enlarged heart and my water had broken, I found myself delivering those twins via a c-section I didn’t want, months before I had planned (you can find the whole birth story here.)
I spent the first few days in bewildered shock. They were here. I was too sick to get to see them, let alone hold them. And after years of waiting and wishing for children, those days felt like pure torture. The nurses used my babies to motivate me: “Get up and walk and you’ll get to see your babies.” “As soon as we disconnect these IVs, you can go see your babies.” I complied with every request because more than anything I wanted to see my babies. We won’t go into too much detail about the thoughtless nurse who denied me the opportunity to see my babies with the missive, “You’ll have 18 years to see them…” Ugh.
And even though they were born healthy, they were still very premature. They had feeding tubes going into their noses, wires measuring everything, and IVs that seemed to need constant repositioning. But their lungs were healthy. They were stable. I was hopeful and optimistic in those early days. But throughout our stay in the NICU, I kept wondering what I’d done wrong. I blamed myself, no matter how illogical that was.
Love at First Sight, Intimidation Second
When I finally got to see my little twins in the NICU, my heart teetered between extreme gratitude and fear. They were so tiny! They were so fragile! And they were covered in wires and tubes. I had done quite a bit of babysitting and I thought my baby game was strong, but these tiny creatures were intimidating. I felt extremely inadequate.
I felt confused in the first week or two as nurses volleyed between advocating for “kangaroo care” (where mothers hold their babies skin-to-skin) and leaving them to sleep in their incubators. These were my first days as a mother and I felt so unsure of my role. I felt like I knew nothing and tried to listen to the contradicting advice of doctors and nurses and struggled to find the balance in the middle.
Here’s What I Did
I knew that I needed to take a more active (but not disruptive) role. I knew there were things that I could do that only I could do:
- I committed to pumping. The nurses referred to breastmilk as “liquid gold.” I determined to pump and supply liquid gold for my babies for as long as I could. I set schedules and pumped regularly. I learned how to access the pumping room of the NICU and I contacted a lactation consultant and rented a hospital grade pump just like the pump used at the hospital, so my equipment was compatible between the two. Every morning when I returned to the NICU, I brought the liquid gold. I worked hard to make sure my equipment was always sanitized and the NICU provided me with empty containers at first. Eventually I bought my own milk storage bags. Since our NICU’s policy at that time was that babies would not discharged from the hospital until they could drink from a bottle, I was determined to provide the contents of those bottles.
- I learned the general times the neonatologists and nurse practitioners did their rounds and I made sure I was not away pumping or eating when they came by. I wanted to talk to them directly and found that I learned so much more when I asked them questions and followed up. They have a room full of babies to keep track of, so they will not be as concerned with one. And often the same doctors were not there day after day, so they were glancing at charts while they came to see my babies. This prompted my next move:
- I started keeping my own little “chart” on a calendar. I wrote what medicines the twins were being given and how many mLs they were taking each day. I kept track of dirty and wet diapers as I could and recorded their weights. Soon I could contribute to conversations and I had a clearer understanding of what was going on with my babies. Sometimes doctors misread those charts and said the wrong numbers and I was ready with correct info to help them evaluate my babies. They’re human. No judgment. I realized that while their job was to provide medical expertise, my role was to be their advocates. I never tried to undermine the doctors and I will never ever claim to know more than they do. But I could take notes and keep an accurate record and that proved to be very helpful. When my twins were transported to another hospital and their records were still on their way up, I had my little calendar “chart” on hand and I could provide information right away that made the transition easier and smoother for us all. I wasn’t pushy or nagging with my little calendar, but I am so glad I kept that record, no matter how basic and non-technical it was.
- I became friends with the nurses. After all, we were on the same team: we all wanted my babies to be healthy and happy and to be able to go home with me as soon as possible. I am still Facebook friends with some of our nurses. For years, we even returned on birthdays to visit and show the nurses our twins’ progress.
- I asked to change diapers. Because I couldn’t always hold my babies and they needed to stay in their little beds and rest, I knew that one of the only contributions I could make sometimes would be to change diapers. I learned how to do so through the little holes on the sides of the incubators (the hospital staff always tries to pretend they are “cribs,” but no cribs look like that, so I am calling them what they really are), cleaning around wires and tubes without knocking any off, then closing up the old diaper so it could be weighed. It helped me to feel like I was contributing to the care of my babies and I got to know how fragile their preemie skin was and how careful I would need to be to prevent diaper rashes. I also hope that I was making things a little easier on the nurses.
- I made nameplates for them that were hung above their beds for their whole stay.
- If a doctor or nurse mentioned something unfamiliar to me, I went home and read about it in a book entitled Preemies. There is an updated version here.
When Things Got Worse
After our initial relief at the health and stability of our twins, tragedy struck: they both contracted staph infections. And for a few weeks, they fought for their lives. We could not hold our babies at all some days and I sat their powerless, watching their numbers rise and fall on their individual monitors. They lost weight. There was talk about what would happen if they didn’t make it. I wondered if my whole motherhood experience would take place within the walls of that hospital. Because I had become a “regular” in the NICU, I was allowed to stay for spinal taps and IV replacements. It hurt to watch. During the worst of their days, each twin had his own nurse who was assigned exclusively to one twin to keep him alive. I remember sitting between the two beds praying and hoping. I felt so powerless. If a baby stopped breathing for a few seconds or had a few bradycardias (we all called them “bradys”), I would talk to him and say something encouraging in a soft voice to try to snap him out of it. Sometimes I was allowed to reach in and rub a foot if necessary to remind him to breath.
And then I would go to the pumping room to pump and cry. I shed many tears in that pumping room during our NICU stay.
One day one of the NICU nurses came up to me and said, “You must have a lot of faith.”
I was surprised because I thought I looked pretty weak. I looked up to see if she was being sincere or if she was in a roundabout way telling me I should have more faith. Or maybe I’d heard her wrong.
I smiled a weak smile and said, “I’m trying!”
I think sometimes people see things in us that we are too exhausted to see in ourselves. I am thankful to that nurse for her comment because it reminded me that I was not the one in charge of my babies’ fates. I leaned more on the One who was. And I determined that if I could only be with my babies for these few, short weeks, I would be there every day. I would take pictures and take note of their big personalities and their quirks. I would make the most of my time with them, no matter how long or short it would be.
What Others Did
I was blessed to receive help from loving friends and neighbors that really helped.
- During the first weeks after my c-section, I wasn’t allowed to drive. I was grateful for friends who would drive me to the hospital in the mornings. I would stay until my husband came at the end of the day to come pick me up.
- My mom and stepdad rushed out when they heard the news and stayed at our house and helped take care of our dogs. They even painted the twins’ nursery because I had planned to do that the weekend I ended up in the hospital.
- My baby shower had been scheduled for that same weekend I was in the hospital. I was blessed to have friends who rescheduled and came to support me weeks later even though I was a wreck! We were blessed to receive car seats as gifts which were such a relief since we had to have them to get discharged from the hospital. It was one less thing we had to worry about and figure out.
- People called and/or texted me to see how things were going. This was a decade ago when smartphones were just coming on the scene, so those gestures were a big deal and I was grateful to know that someone else in the universe was thinking about me.
- I had a lot on my plate when I went into the hospital. I was a full-time teacher. I was serving the youth in my church. We had two dogs. And my husband was still on crutches from a major knee surgery he’d had a few weeks before the twins came. I was so grateful for all of the people who silently came in and helped take care of all of the balls I dropped. I am positive I will never know all of the people who picked up my slack, but I am grateful that I did not have to worry about much of that–I couldn’t–while my twins were in the NICU. There were quite a few weeks where I didn’t even go to our regular church building because it was further from the hospital. I would attend a service at a church building (same denomination, just different congregation) closer to the hospital, then go straight to the hospital from there.
I Could Go On and On…
More than once I have attempted to write a book about our time in the NICU with our twins. But each time I retreat from the task because it brings up so many difficult experiences. My heart breaks all over again when I think of those difficult days. It was such an intense challenge. I am forever thankful that my babies were able to come home. Yes, they came home wired to monitors and I spent months of sleepless nights feeding, pumping (one twin would only take milk from a bottle), changing diapers, and holding babies upright to keep their reflux at bay. But they grew. They continue to grow. And now my babies are eleven and you would never know by looking at them that they were born ten weeks early. And for that, I am so grateful. But even now, reminiscing on that harrowing time is something I can only take in small doses. I hope one day to have the ability to push through that pain and write the book. In the meantime, if you or someone you know or love is going through a NICU stay and you need some encouragement or you have a question I didn’t address, please feel free to comment below or reach out to me directly. I would love to offer hope and joy in any way I can.
