Before the boys were born, I was confident that we were going to avoid NICU time. They were measuring large, so size wouldn’t be a problem. The main concern was going to be low blood sugar due to my gestational diabetes but increased insulin was giving me better glucose readings.
So when Luke spent every single day of his new little life in the NICU for 17 days, I was blindsided and quite devastated. Days 1 and 2 of his life was partially spent at Norton Children’s Hospital downtown with his Daddy while brother and I stayed at Baptist East Hospital. Days 3 through 17 were spent at Baptist.
Luke hadn’t been back in the room with us for even 24 hours. When Luke started showing continuous trouble breathing, I called the nurse and they took him to the nursery for monitoring. A couple hours later, the Nurse Practitioner came in to tell us that they were already starting his admission to the NICU for a slow flow nasal tube, a feeding tube, and further evaluation to determine if anything else was needed. She said we could probably go see him in the next two hours, but it ended up being even longer. Hospital time is always longer than the estimate they give you. So several hours later, we made what seemed like a very long walk to the NICU. Gabe had to come with us and be admitted to the nursery while we went to visit. Each time of entry, our security bracelets were checked and our temperature was taken. Then we had to scrub in like you see in the movies by disinfecting your phone and washing your hands a certain way. There were yellow gowns to wear over top your street clothes too.
Luke was in a private room at the end of the hall so it always felt like a long trek to get to him, especially when I was only days out from my c-section. Each room had sliding glass doors with a curtain on the inside to give the child privacy. Depending on the time, the room might have very dim lighting so the baby can rest or the lights might be turned up to try to wake them for a feeding. There was always some sort of faint beeping in Luke’s room because of all the monitors. Despite that, it was a very peaceful setting. I often felt like I could rest or even nap if I wanted to while there to visit.
Luke looked so small and helpless in his NICU bed that first night with all of his tubes and monitors on. The lighting was turned down low because it was nighttime. We quickly learned about cluster care- where they took care of all his feeding, diapering, and check up needs during the same time frame every three hours so as not to disturb him and he could rest in between.
We were able to hold him a bit that first night but didn’t stay too long because it was late and Gabe was hanging out in the nursery. He was never allowed to come back into the NICU. Seth or I had to be with him 24/7 or else put him in the nursery to wait on us. Though we couldn’t always be with him, they offered us access to Luke at any time. They set up a camera with a private login for us to see Luke at any time except during the care time. We could also call at any time of day to check in. I often called at least once or twice during the night to check on Luke and how his feedings were going.
The next day we talked to the doctor and learned that Luke would need to stay in the NICU until he no longer needed the slow flow nasal tube and when he was eating independently without the feeding tube for 48 hours. The next 14 days I learned so much about how the NICU staff assessed and worked with our boy to help him grow the skills to come home.
At some point, a nurse brought us a new family packet and said, “From now on, no matter how long or short your stay, you’re a NICU family now.” That made me nearly sob because it’s a club no one wants to join. I was greatly impressed with the amount of family support they provide around classes, a family room with free snacks and goodies, no set visitation or phone call times so you could visit or call any time day or night. They truly try to give you as much access and control as possible depending on your child’s situation.
The initial risk was Luke’s rapid, sporadic breathing. Sometimes he was breathing up to almost 90 breaths per minute when they should be closer to 60. At that pace, it was unsafe to bottle feed him because it increased his risk of aspiration. So for awhile, the nurses would assess his vitals and if his breathing was too fast, they would automatically decide to tube feed him for safety.
As that settled down, the nurses taught me about Infant Driven Feeding, which allowed the baby’s readiness to determine if they were bottle fed or tube fed. It’s silly how easy it is to forget that babies are tiny humans and can actually communicate with us if we learn to listen. They know their own capabilities and will tell you when they are developmentally ready. You can’t will them onto your own timelines; trust me, I tried.
When rapid breathing was no longer a concern, we would assess Luke’s readiness to eat. So we’d change his diaper to try to wake him up and look for feeding cues- rooting, sucking on his pacifier, etc. If he slept through it all, he wasn’t ready to bottle feed on his own. If he woke up and showed some of those signs, we’d try to bottle feed with tube feeding as a back up.
After he bottle fed, we would assess the quality of his feed. Was he doing the suck, swallow, breathe pattern consistently and correctly? Was he gulping and choking due to the angle at which he was being fed? Did he lose much milk due to a loose latch on the nipple? Based on those observations, Luke and I started working with a speech therapist nearly every day to help accommodate some of these challenges.
Luke was mostly on his own in learning and practicing the suck, swallow, breathe pattern, but the more he used a pacifier, the more he could practice sucking and breathing. To help him not gulp and choke while eating, we put him in a side lying position so that the milk can pool in the side of his cheek and he has a little more control of when and show much he swallows. When Luke was losing too much milk due to his latch, we would give chin and/or cheek support by gently putting a finger under the chin and/or cheek to encourage him to tighten his latch. Day by day, we would practice these things. Soon, Luke had significantly improved his eating skills, but he was still to tired to stay awake or was unable to finish eating while he dozed off. When this happened, I often had luck angling the bottle down without removing it from his mouth so most of the milk fell out of the nipple and back into the bottle. That would often prompt him to start sucking again.
This was pretty much our routine until Luke decided he was ready and strong enough to come home. I visited him every day, which was quite a challenge when I couldn’t drive for 2 weeks from having a c-section. I had to rely on others to take me and pick me up. Afternoon visits were tough because each morning I woke up and couldn’t get to him fast enough. I often got in a terrible mood until I saw my boy. My day just wasn’t okay until we had our visit. That being said, I’m very very grateful to my parents, my sister and brother-in-law, Seth, Cammie, and Jen Jen for helping transport me so I never had to go a day without seeing Luke.
I was so thankful for the NICU staff that I nearly cried a couple of times because I felt like our family was so cared for. That team of people is very special. They work with the most delicate, sickly of babies to help them grow stronger while also navigating relationships with the families who are emotional and heartbroken to be separated from their kiddos. I can’t imagine it being an easy job.
Our favorite nurse was Sandy. Anytime Luke was under her care, I felt more at peace and at ease because it was obvious how much she cared for him and for us. She was the one who fully introduced us to the NICU and all it had to offer. She was thorough in her explanations but not in an overwhelming way. She was patient and checked in with me often. She celebrated Luke’s progress and on his bad days, she was still encouraging while realistic. We didn’t get to tell her goodbye because Luke was discharged on one of her days off, but I will never ever forget her and how she took care of our family.
Anytime we had a nurse who wasn’t Sandy, I would get anxious because everyone had their own style and preference related to Luke’s care. Some didn’t mind if I held him the entire visit. Some wanted us to leave him alone until his cluster care time so we didn’t disturb his rest time. Towards the end of our stay, we had a nurse we’d never worked with before. So when I arrived and was introducing myself, I asked what her preference was in getting Luke ready to eat- did she want to do everything or should I help? Her response hit me right in the heart- “You just be his mama and do whatever you would normally do. I’ll just be here if you need me.”
Up to this point, I had rarely ever felt like I could “just be his mama” because Luke had had so many struggles since his birth. His entire tiny life, medical professionals had told me what he needed and how it needed to be done. They had dressed him, bathed him, fed him, and held him more than I had. So in this moment, I was so very thankful for her response to just be his mama. It also made me feel more confident as we prepared to bring him home, like I knew what I was doing despite all of his health troubles.
On the flip side, there were a couple nurses who weren’t my favorite. I called and talked it out on those days and am mostly satisfied by how it was handled. In those moments where I was unsatisfied or concerned with Luke’s care, I was still able to stay relatively level headed in my conversations. I remember saying, “I realize I’m emotional and hormonal, and this is how I feel and why. Do I have reasonable expectations for his care or do I need to readjust?” One of the two times I directly requested a nurse not work with him anymore. The second time, they responded by not placing the other nurse with us anymore, and I was thankful. The NICU journey is tough and we were fortunate to have been there at a time where there was enough staff to have our wishes honored in that way.
The NICU journey was also one that was often one step forward and two steps back. For every good day, the next day had a set back of some sort. It was frustrating because there was no real answer about when Luke could come home. The day before his discharge, the doctor called me and said if he has another good day like today, he can come home tomorrow. But again, the fate of that decision was in the hands of a 2 week old. It wasn’t until roughly 10:30am the morning of his discharge that I got the news. I’d called to check in with the nurse as usual, “Hi this is Ashley just calling to check in on Luke.” The response was, “Luke is doing great. He took his whole feeding, has peed and pooped, and he’s going home today!”
The next couple of hours was a blur. Seth was climbing that morning so I called to tell him the update and the timeline. I called my mom to update her that we’d be taking Gabe to the hospital with us so they could finally take their newborn pictures together. We needed to eat lunch. I ran to the Dollar Store for a few minutes to get some snack items to make a thank you basket. And then we were on the road!
I danced into the NICU that day… and I don’t dance lol. As I entered doing whatever shimmy my body decided to naturally do, I was also singing, “We’re going home today!” The nurses in the entryway either danced with me or clapped; I can’t remember but there was some group celebration. I scrubbed in for the last time and finally saw my boy with no more feeding tube, monitors, or cords. He needed one last feeding as the nurses helped me pack up his things. Multiple nurses popped their heads in to wish us well and congratulate us on going home.
Gabe and Luke were reunited for their sweet newborn pictures. The hospital photographer agreed to stay until we arrived to help us get these pictures and I love them, despite Luke being mad at the world haha. Then we loaded them both in the car to head home, and Jaclyn immediately knew which brother was which. That night, the true exhaustion began as we had all the babes under the same roof. We are now in a (mostly) joyful delirium as we navigate the newborn phase with our baby boys.