We are excited to bring you a new NICU Family Story of the Month this month! Evva Allen shares her family’s experience on their NICU journey. As a nurse herself, there was a lot that Evva understood medically that many of us may not, her story shows that even those with a medical background, maybe especially those with a medical background, face the giant that is the overwhelmingness of all the information that a NICU stay overloads you with feeling like they only have a sling shot to fight back with. She shares so well the many emotions and many difficult facets of postpartum life with a baby in the NICU. Thank you Evva for sharing your story with us. Below is her story in her own words:
When my husband and I found out we were pregnant (right before Valentine’s Day- surprise!) with baby number 4, we felt a slew of emotions. We were excited to add to our already “big” family, nervous about how our lives would change with the new addition, and (surprisingly) overwhelmed with congratulations from our friends and family.
My pregnancy was not as easy as my others had been, to say the least. I worked night shift as a nurse on a busy unit in trauma at UK. I stayed sick for most of the pregnancy and always felt like I had been hit by a truck. At about 16 weeks in, I was told that because of my autoimmune diseases, our baby was at risk for congenital heart block and other complications that required a high risk OB and fetal cardiologist to oversee our care. Our baby had to have fetal echocardiograms every 1 to 2 weeks, as well as non-stress tests, up until the point of delivery. We were also told that I was at high risk for developing complications such as blood clots and preeclampsia, so I was seen by my high risk OB every 1 to 2 weeks also. Thankfully, our baby never had any complications with his heart.
However, at 34 weeks, on a Monday morning, I woke up from sleep at 2 a.m. with a killer headache (not super uncommon for me), so I took some Tylenol and tried to go back to sleep. Around 10 a.m., I looked at my husband and told him that I needed to go get checked out because my headache was getting worse and worse by the hour and I was feeling pretty bad. We took my other kiddos to my mom and headed to UK triage. When we got there, I was honestly expecting them to say, “Everything looks great, you probably just have a migraine” and send me on my way. Instead, they told me that my lab work revealed some things that they wanted to monitor for the next 24 hours and that they would put me in a room for 24 hour monitoring and that I would likely go home if my 24 hour urine studies came back negative. Unfortunately, on Tuesday my studies showed that I was spilling critical levels of protein and they admitted me. I was started on magnesium and they gave me a shot of steroids, as they believed delivery was imminent. On Wednesday morning, we were told that I would be monitored inpatient and that baby would stay in as long as he could and it still be considered safe for us both. By Wednesday evening, we were told we would be having our baby Thursday morning via scheduled C-section. I was a nervous wreck. I missed my kids at home, I had not gotten our house or car prepared completely yet, and I was still trying to figure out maternity leave plans at work. My mind and emotions were a mess. The doctors assured me that a baby born at 34 to 35 weeks usually does well with minor complications, but I couldn’t help feeling scared about having a preemie and all of the what-ifs that come along with it.
Thursday morning came, and with very little sleep and a lot of nerves on board, I was wheeled into the operating room. I sat on the edge of the table, looking at the chipped nail polish on my toes (another thing I didnt get to do before delivery) praying for a smooth surgery while they did my spinal. I felt my legs go numb and they helped me get laid back onto the table and had me lay with my arms outstretched. They brought Chris back and within minutes they had started working on getting our baby boy out. After a lot of pulling and tugging sensations and what felt like hours, I heard the doctor say, “Here he comes!”, followed by a loud, strong cry from our baby boy, Alijah. Hearing that sweet sound, I was flooded with a sense of relief. The nurses wrapped him up and let Chris hold him to introduce him to me and to take some pictures. After a couple minutes, the nurses had Chris take him to the nursery while I stayed in the OR to go to the recovery room.
In the recovery room, my mom came in to see me and told me that Alijah was requiring some oxygen and that they were taking him to NICU to monitor him, and that this was not uncommon for babies who are early. She showed me some pictures she had snapped of him before coming down to see me, and I remember thinking how different he looked from our other babies and how precious his little face looked.
A few hours passed and I finally was taken to a room for postpartum care. Nurses came in and out, family members came in and out… everyone came in and out except my baby. Just as I was about to ask when the baby could come up to my room, a doctor walked in and said he needed to talk to us about Alijah. He sat down and paused for a moment. He had a calmness about him as he sat there and I remember feeling like I could trust this man and his intuition. He began to tell us that Alijah was now needing CPAP and not just normal oxygen, and that his respiratory status was very guarded. He told us that all of these complications were normal and that he expected him to be much improved by the next day. He had us sign a consent, just in case, for any and all procedures he may need in the NICU, just so that if anything emergent came up they could do what he needed done.
I barely slept Thursday night, between being in physical pain from surgery and emotional distress being away from my baby, who I did not hear any updates about until the next morning. And unfortunately when the doctor came in, he had bad news. Alijah’s respiratory status had declined overnight and he needed to be intubated and needed a chest tube for a collapsed lung. I was devastated. I asked my nurse if I could be wheeled down to the NICU to see him and she told me she would try to get me down there. After coercing the doctors, she got the OK and she wheeled me downstairs. Every bump we hit on the trek downstairs jarred me and was incredibly painful, but I was determined to see my baby. As we rounded the corner, I saw my baby’s name on the door, beautifully handwritten in colored pencil on a piece of cardstock.
I saw 4 or 5 nurses rushing around the room and several doctors standing around his bassinet with worried looks on their faces. As I was rolled into the room, I felt their eyes on me. His nurse, who I will never forget, kindly and with the calmest demeanor, updated me on what was happening. Alijah was on medication to keep his blood pressure up. He was about to be sedated and intubated and he would need to have bilateral chest tubes placed. He had a central line and an arterial line in his umbilical cord where I was used to seeing a little newborn belly button with a clamp. He was struggling to breathe. The doctors were throwing around words like “PEEP”, “ECMO”, “TPN”… words I knew well from being a nurse, but that seemed totally foreign to me in the context of a newborn baby. I looked at the nurse with tears in my eyes and I felt so helpless. I told her this was the first time I had seen him other than right after delivery, over 24 hours ago at this point. She smiled, talked to the doctor outside the room for a minute, came back in, and told me that while we were waiting on the team to come intubate, she was going to let me hold him briefly, even though they don’t usually let parents hold babies in this kind of condition. My momma heart needed that more than I can ever say. And I think Alijah needed it too, as his respirations slowed a little bit as I cradled his little body in my arms. I will forever be thankful for the nurse who advocated for me and who carefully and delicately placed him in my arms for just 1 minute so that I could say I got to hold my baby if anything else were to happen to him. After placing him back in his bassinet, we were told we had to step out, and they got started getting our boy on the ventilator.
I didn’t hear anything until the next day, as we had called a couple times and the nurse was too busy to update us at the times we called. My husband physically went down there, but never got more than a “wait and see” type of answer. The next 48 hours were excruciating. Physically trying to heal from my 4th c-section, pumping every 3 hours, having visitors come and no baby for them to see… so many painful memories of my first few days after Alijah’s delivery. I longed for the normalcy of my previous deliveries- the sleepless nights due to frequent feedings, the taking pictures of baby in the cute little outfits, the visitors coming and ooh-ing and aww-ing over the newest addition to the family. Instead, I was in a state of constant worry about what was happening downstairs in NICU. I cried almost all day for the next 3 to 4 days. My husband and I were fearful that he might not make it, and we didn’t know what that would look like for our family if we were to have to endure that pain.
We prayed incessantly. Our family prayed. Our friends prayed. We were astounded by the love and support from our family and friends. We visited him as much as we could between my husband juggling our other 3 kiddos and me recuperating from surgery.
By day 5 of our NICU journey, we were seeing small improvements. Alijah was requiring less oxygen and less PEEP, and by day 7, we were able to get him off the ventilator. His little cry was weak and hoarse, but having not heard his sweetvoice since delivery, I cried happy tears hearing him make those little newborn coos and cries that, just a few days prior, I was not sure I was ever going to hear again. I was relieved by this big milestone, but the nurses told me we would have a long road ahead of us still. We had to get him off morphine, off CPAP and oxygen, and eating well and gaining weight before we could get him home.
Little by little, we saw improvements, but it was a slow process. Morphine withdrawal was difficult and he battled fevers, vomiting, and irritability. He pulled out his feeding tubes multiple times from being so irritable and fussy. It was so hard to watch him go through this, but I just kept clinging to God and told myself “this too shall pass”.
Once the morphine was out of his system, we started weaning CPAP. This process took a whole week. It was a week of feeling guilt for being at the hospital and away from my other babies at home or feeling guilt for being home with them and not with Alijah at the hospital. I felt guilt and sadness no matter where I was. I felt like the nurses were judging me every time I left the NICU to go home, even though I am sure that is not the case, as they were always kind and supportive. I struggled with pumping every 3 hours, having no baby at home to nurse or bond with. The kids asked me all day when baby brother was coming home, which would send me into tears. My husband tried desperately to make things as normal as possible in between visits to the hospital. We had family and friends bringing us meals and sending us cards and donations, offering prayers and help with the kids. It was truly amazing to see how our people stepped up and took care of us in this incredibly stressful time. We will never be able to thank them enough.
A week later, we were off CPAP and the only thing keeping Alijah in NICU was that he needed to learn how to eat. This process took almost another week, but he got the hang of it much more quickly than the doctors and nurses expected and he was steadily gaining weight like he needed to to start preparing for discharge.
On day 21 of our NICU stay, we finally heard the words we thought we may never hear- “You can take him home!” Ironically, the nurse who let me hold Alijah on the day he was intubated was also our nurse on the day we went home. She will always hold a special place in my heart for her caring demeanor and how she cared for Alijah during that terrifying second day in NICU. Packing up his things, I could not believe the whirlwind that the NICU was to us. It was possibly the hardest 4 weeks of my life so far, physically, spiritually, and emotionally. Walking out of those NICU doors WITH our baby in tow was a priceless feeling that I will never forget.
Our NICU story is a story of fear and sadness, but also one of healing and triumph. I know so many who have NICU stories like ours, and I think we can all say that the NICU changes you in so many ways, whether you’re there for a day or for weeks to months. It changes how you see things. It changes your heart. I thank God every day for my sweet son, who is now a healthy, happy 10 month old. I pray often for mommas and daddies who are enduring the hardships of a NICU stay and if I could give them any advice, it would be to never give up hope, to stay strong for your baby, and to say no to those feelings of guilt. You are doing a great job.