Written by Jennifer Marchione
Your NICU Story
My oldest, Avery, was born unexpectedly five weeks early due to placenta abruption. As soon as she was born, they whisked her away to the special care unit. I didn’t get to hold her. They brought her over to me so I could see her briefly before they took her. Once I was in recovery, I kept asking if they would let my husband go up, but they wouldn’t until all tests were done. After about an hour, he was able to go up and we FaceTimed so I could see Avery. My heart was broken seeing her hooked up. Once I was fully recovered, the nurse wheeled me up to the NICU. I was able to put my finger into her crib, but was not able to hold her. It wasn’t for another 24 hours until I could hold her. I was able to stay for about 20 minutes and then I was told I wouldn’t be able to see her again until the next day. I was heartbroken. I was crying in my hospital room because I never imagined this is what it would be like after having a baby. My cousin, who is also my best friend, had two kids before me and it was always a party in her room celebrating the new baby. I was heartbroken that Avery couldn’t be with me. My nurse found me crying alone in my room and felt bad for me. She said if I could walk to the bathroom at 10pm, she’d take me up again before her shift was over. This whole experience was so much better because of the fabulous nurses both in maternity and the NICU. The first day was very uneventful which was good. By the end of the second day, she started struggling to eat and breathe. She had preemie apnea. The doctors and nurses were so nonchalant when talking to my husband and I, but I was freaking out. I didn’t understand how it could be normal to forget to breathe or to not know how to eat. The first few days were horrible. She wasn’t making progress and if anything, just spiraling worse. The day I was discharged and had to leave Avery at the hospital was one of the worst days. I couldn’t stop crying. I was so devastated to leave her behind. I would spend 14 hour days in the NICU after discharge. My husband would drop me off before work and do the breakfast feed with her then come back after work, to do the dinner feed and pick me up. My life was the NICU. I would just stare at the monitors, praying that she wouldn’t forget to breathe so that the five day count wouldn’t start again. The nurses would try to move the monitors out of eyesight and I just moved them back. It became a game. Shortly after a week, I called a friend after I got home from hospital sobbing. I felt like it wasn’t getting better and I didn’t know how much longer I could keep doing it. Literally, the next day, Avery started taking a bottle and within a few days we were asked to bring our car seat. I knew this meant discharge was almost upon us. I didn’t sleep the entire night of the car seat test because I was so worried she wouldn’t pass. To my surprise, she did! We were only in the NICU for 12 days. Compared to most people who experience this, that is a short stay. But when you are living it, it feels like forever. Avery is now an amazing, spunky, full of life three year old and you would never know she was born 5 weeks early.
Fast forward two years and we found out we were pregnant with twins. I was so excited! But one of my first thoughts was ‘oh no, more NICU time.” I did EVERYTHING the doctor suggested trying to keep the babies cooking as long as possible. I couldn’t picture going back to the NICU. I made it to 37 weeks and 4 days before they had to take the babies out due to lack of weight gain. I couldn’t believe I made it 2.5 weeks longer with TWINS than I did my singleton. I was on cloud 9! I was convinced there would be no NICU time. And if there was, it would be just monitoring for a few hours. During the c-section, I heard twin A scream so loud. I was so relieved to hear her cry. As they were trying to get twin B out, I heard them say Twin A’s heart rate was too high and she had to go up to the NICU. I couldn’t believe it. They didn’t make it seem like a big deal so I remained hopeful. My husband did get to hold both twins before they took Bailey away. I went into recovery with Charlotte and I kept asking for an update on Bailey. They called and said she broke out of the high heart rate. We were all relieved. A cardiologist came to talk to us, and said as long as she had no more episodes, it was just the shock of being born. We were so hopeful she’d be with us the next day. After recovery, they wheeled me up to the NICU. The emotions came flooding back. I couldn’t believe we were back here. This time, I did have Charlotte downstairs with me in my room, but I was supposed to have two babies with me, not just one. I felt like such a bad mom because I couldn’t be in two places at once and Charlotte wasn’t allowed upstairs. Again, I had an amazing nurse who told me if I could walk she would bring me up before her shift ended. I am so thankful for nurses. Overnight, her heart rate spiked again and they had to put her on medicine to try to stop it. I knew our time was not going to be short. Then, she started having some apnea spells, too. Not as many as Avery had, but they were still there. I was beside myself. I had one daughter at home, one in maternity with me and one in the NICU. We were discharged having no idea how much longer Bailey would be in. She could eat like a champ, but she kept having high heart rate spikes. They couldn’t find the right dose. The first week home, we went every day for 4 hours to visit. We brought Charlotte and my husband worked from the hospital. A little over a week after birth, it was a Saturday morning and my husband brought Avery to gymnastics. The plan was to drop Avery at my parents then Charlotte, Scott and I would go see Bailey. While waiting for Scott, a doctor called me saying they couldn’t break Bailey’s high heart rate. None of the usual maneuvers were working. I could hear the panic in her voice. They told me they were transferring her to MGH. I was so scared. We couldn’t get there fast enough so she had to travel there by herself. We arrived a few minutes before Bailey and saw her being wheeled in. She was so little and hooked up to so much. My mommy heart was so sad. I felt so helpless. I couldn’t speak without breaking down. The nurses and doctors must have thought I was crazy. It was a long week at MGH. Bailey needed to go 48 hours without an episode. She’d always make it like 36-40 hours and we would get so hopeful. Then she would have an episode. The nurses were all obsessed with her and so amazing. Day after day, I would leave Charlotte at home, send Avery to school, and drive in and spend the day with Bailey. I was pulled in three different directions and it was so hard. Finally, they found a dose of meds that worked. Two weeks after she was born, we got to take her home. It was the best day! I was so thankful to be done with hospitals. I was so thankful for everyone involved, but also so traumatized from the experience.
Is there anything you wish you had known prior to your NICU experience?
With Avery, I wish I had known that the reason the doctors were so calm was because to them this was so normal. They saw this all the time. I also wish I knew that they weren’t lying. They had told me one day it would just click and she’d learn to eat and once she did, she’d be home so quickly. It was the truth, but in the moment it didn’t feel like it.
Do you have any advice for parents experiencing the NICU?
My biggest piece of advice is to rely on your support system. Use your family and friends to help you whether that is to babysit an older child, visit and keep you company, bring food, walk a dog, etc. People want to help and they don’t always know how. My other piece of advice is to try to find someone who has been through it to talk to. All of my family and friends were truly incredible checking on us and going above and beyond for us. I am so appreciative. With that being said, they didn’t know what to say to make me feel better as much as they tried. The few people I knew that went through something similar had all the right words to say. They just got it. It made me feel not alone, which was what I needed. My last piece of advice is to not live at the NICU. I spent 14 hours a day with Avery. By the time we got home, it was after 9 and we were exhausted. When she finally was discharged, nothing was set up for her. We should have spent a little less time at the NICU and a little more time getting ready so once she was home, we could be fully focused on her. With Bailey, I couldn’t spend as long there because I had two other kids at home. I felt guilty about it., but it was good for me mentally to get a break from hospitals and monitors. I became obsessive about the monitors both times which was not good for anyone.
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