NICU life is a curious thing, and quite frankly, I’m still trying to process the 198 days we spent living it. The very place that brought the most stress to my life also brought support and security to my life. I spent nearly every day wishing we could just go home. Some days I felt sad we were still in the NICU, some days I felt angry, some days I felt exhausted, and on a few days I felt thankful to be in the NICU.

There were times I felt like the NICU had robbed us of so many moments we would never get back with Cora and Jane. The truth is (by God’s grace) the NICU gave us the biggest gift; the gift of life – the gift of a future full of many more moments with Cora and Jane.

I want to take this moment to express my sincere gratitude for what the people of Akron Children’s NICU did for my daughters; and not just my daughters, but also for what they do every day for thousands of other babies that wouldn’t have a chance at life if the NICU did not exist. You do amazing work, and I will be eternally grateful for all that you do to give preemies the absolute best chance of success.

As a mom, during a NICU stay (no matter the length), you spend every single day dreaming of that glorious day you finally get to take your baby(ies) home. Above all else, you want your baby to be healthy and well. But you also just long for the normalcy of a home routine. You are so ready to say goodbye to that hospital commute, that hospital couch that has become your bed, those hospital smells, the hospital food, the tiny sink in which you must wash all the bottles and pump parts, those pesky lead wires that your baby manages to yank off with their tiny toes causing an array of alarms that nearly give you a heart attack every.single.time, the hospital coffee, the need to ask permission if it’s okay to bathe your baby, the separation of your baby(ies) and their older siblings at home, the inconvenience of it all. To all of that you are ready to say “so long, farewell, auf wiedersehn, adieu!”

However, I can tell you what you’re not thinking about leaving behind. You’re not thinking about leaving behind the immense care and sweet friendships you have found in your baby’s nurses and therapists, or, the security of an entire medical team that is ready and willing to address any and all concerns 24/7. You’re not thinking about any of that because you just want to go home. On Day of Life 198 we were finally going home, and I couldn’t have been more excited. Words cannot express the gratitude I felt as Chris and I pulled out of the hospital parking lot with all 3 of our earthside children together, heading for home.

About 3 months later, I came to a strange realization: I began to miss the place that I could not wait to get away from. There are things about the NICU that I will not ever miss, but I missed the constant support we received there from people that didn’t just know preemies, but people that really knew Cora and Jane. Cora and Jane came home in the year 2020, shortly after the world shut down due to the pandemic. My mom, who works at a school, was off for the summer so she came over often to help me once Chris (my husband) was back to work. I was so thankful for all her help and support. When summer was over, and my mom returned to work, we felt it was safest for her to keep distance to try to keep our immunocompromised girls as protected from illness as we could. When you bring home a NICU baby, a period of quarantine is already encouraged, and the 2020 pandemic only heightened our quarantine situation. Suddenly, I was completely on my own with all 3 kiddos during the day and I certainly felt the weight of it. Leaving the NICU didn’t mean leaving prematurity behind. Bringing home Cora and Jane also meant bringing home the challenges that were a result of their prematurity. Was it 100x better than being in the NICU? Absolutely! But it was a huge adjustment for all of us, including Asher.  I was homeschooling our oldest, trying to juggle 2 babies with g-tubes (not literally, of course), 1 baby on oxygen, insane reflux, the never ending post-NICU doctor appointments x2, and making sure Cora and Jane had all their meds and medical supplies ordered on time. When issues arose, I no longer had a medical team down the hall to come assess things. At times, I felt very alone, and I think that is when I realized how much I truly missed my NICU people. I of course missed their medical expertise, but I also missed their friendship. I missed sitting in the recliners chatting with the nurse as we each fed one of the girls. Sometimes I would take that time to voice my concerns pertaining to the girls. Sometimes we would just be recapping that week’s episode of a TV show we were both watching. Other times we were talking about the goodness of Jesus, and sometimes we would be talking about delicious food or the royal family. On the really hard days when I spent most of my day crying, we didn’t talk much at all during feeds. That was okay too, because I could still feel their support. They became my friends. And now that we were home, I was feeling the void of that daily, tangible support.

Prior to spending nearly 7 months in the NICU, I always thought NICU nurses were amazing because of the work that they did in caring for those sweet babies – and they are. But, after our NICU stay, I learned that those nurses are amazing for caring for us as parents, too. Living the NICU life has a way of isolating you from normal life like no other. Entering the NICU is like entering a whole new world. All your physical, mental, and emotional energy is consumed by the NICU to the point where, even if you had the spare time, you wouldn’t have any extra brain space to uphold a social life outside of it. As much as I missed spending time with our extended family and friends, this season of life made it nearly impossible to do so. As a result, people in the NICU became like family to me. I found them easy to talk to because I didn’t have to explain the status of Cora and Jane to them. I didn’t have to give them the exhausting, ever changing updates, because they were right there living it with me.

Hands down, Cora and Jane had the very best primary nurses in the world. (A primary nurse is when a single nurse is identified as the point of contact and primary caregiver for a patient during their hospital stay.) Cora and Jane had 3 primary nurses, AKA, “Team Cora + Jane”. My heart and mind was always at ease when I knew one of these 3 nurses were taking care of the girls. Not because I felt like other nurses weren’t capable, but because those three knew Cora and Jane like no one else did. It is here I would like to put in a plug for primary nursing. If you are a current NICU parent and are unaware that primary nursing is a thing (like I was for the first month), it is indeed a thing! And it is a fabulous thing. When you find a nurse whom you feel comfortable with and with whom you can fully trust to leave your baby in their care, don’t let them get away! Primary nursing will change your NICU Life, Hundo P!  Chris and I chose “Team Cora + Jane” because we saw they were exceptional nurses from a medical standpoint but there were also a few defining moments that formed our decision.

I can specifically remember the first day Nurse B took care of the girls. Cora was needing blood and I felt worried that she needed blood. To get her IV in, the nurse had to shave some of the hair on Cora’s head. Nurse B saved the hair on a piece of gauze with tape overlaying it. She sweetly labeled it “First haircut 11/19/19”. That probably seems like such a small gesture, but for some reason it caused me to relax. It helped me look into the future, in hopes that it would be “the first of MANY” haircuts for Cora. The more we spoke that day, we learned we had a lot in common, which helped to make things feel more comfortable in that NICU room.

As I mentioned in an earlier post, Nurse S took care of Cora and Jane on Day of Life 3. He cared for the girls a few other times before we asked him to primary them. We soon learned he was very well skilled concerning the ventilator. After Cora’s bout with MRSA pneumonia and struggles to recover, Chris and I both knew we wanted him to be on her team. We really appreciated the time he would take to explain the ventilator and its different settings to us because to us, he wasn’t just teaching us about a machine… he was allowing us to get familiar with our daughter. Understanding the numbers on that vent essentially helped me to understand Cora better. I learned how to study the correlations between the numbers on the vent and her breathing, positioning, body language, etc. As a result, I was able to learn what made Cora comfortable. And comfort was key for that sweet girl. I wanted to learn as much as possible;  because, I felt the more I understood, the better I could advocate for my daughters.

Towards the end of our stay, I became very aware that as nurses, sometimes you just cannot win with us NICU moms. We long to hear good news concerning our baby, words of hope to cling to; but after riding the roller coaster for months, we are also terrified of getting our hopes up, only for things to go downhill again tomorrow. Nurse S had a way of helping me enjoy and embrace the good days Cora and Jane had instead of worrying about what possible setback could be right around the corner. On the not so good days, Nurse B had a gentle way of reminding me that life would not always look like this; that, there were indeed, better days ahead. She helped me keep perspective of the big picture, and not just the problems of the here and now. They complimented each other perfectly.

Nurse A took care of the girls many times before becoming their primary night shift nurse because she was being trained by Nurse B on day shift during the early months of our NICU stay. Because of this, we got to know Nurse A well, and as soon as she moved to night shift we asked if she would primary our girls. One afternoon during her training, I was holding Jane, when Cora’s monitor kept alarming. Cora was a very particular little lady. If she was uncomfortable, she let us know in her vital signs. She was still intubated at this point, so Nurse A came in and checked her positioning, her tube, and all the possible things that could be causing her saturations to drop. Every couple of minutes, Cora’s monitors would go off.  When I looked over at Cora’s isolette, expecting to see the nurse suctioning or adjusting Cora’s endotracheal tube, instead, I see Nurse A sitting at the end of the isolette with her hand reaching in to massage Cora’s feet. As she continued to rub Cora’s feet (something taught and encouraged by the PT/OT team), Cora’s breathing relaxed, her heart rate relaxed, and her saturations came back up. That right there is a gem of a nurse! It is an image I will not ever forget. She went above and beyond the medical side of things, to comfort my daughter when I couldn’t. That is something every NICU mom wants to see in their child’s nurse. Leaving my girls each night was heartbreaking, but I could always rest a little easier when I knew they were in Nurse A’s care.

All of that to say:

Team Cora and Jane,

Thank you for being our friends.

 Thank you for the countless laughs along the way.

 Thank you for being our sounding board.

Thank you for talking us through the setbacks and rejoicing over all the victories… big and small.

Thank you for being an advocate for us and our girls.

You quickly became some of our biggest sources of support on this journey,

 and we’ll forever be indebted to you!

p.s. – thank you for your diligence to ensure Cora and Jane had beautifully shaped heads upon their homecoming arrival 🙂

We are officially 2 years post NICU and for the first time it feels like we’re entering a state of normalcy in our family since their birth. Sometimes I look back and wonder how in the world we managed that first year at home. But when I really recall it all, I see God’s grace in each and every chapter of our story. With every trial, God’s grace was greater, His compassion never failed us, and His mercies were and still are new every single morning.

In the past two years, we’ve ditched steroids and oxygen, overcome extreme reflux and serious feeding difficulties, said goodbye to pulmonology, feeding therapy, NICU follow-up clinic, occupational therapy, physical therapy, and should be ditching their g-tubes and the endocrinologist early this summer! The girls have learned to sit, crawl, walk, run, dance, jump, play and talk! They are simply living their best life and it is pure bliss to see them truly enjoying life! I can look back on that  difficult season of life in the NICU and still find many things to be thankful for, and being home, together with my family under the same roof is something that will never get old!

I will give thanks to the Lord with my whole heart;
    I will recount all of your wonderful deeds.

Psalm 9:1