by Megan Ueckert
The NICU is a place that changes a person. The sounds of babies crying and alarms sounding every second and lights flashing creates an environment of chaos and constant panic. You learn more medical terminology than you ever thought possible as you ask your nurse and doctors about bradycardias and weight gain and feedings.
Your heart will stop momentarily with every new test result. You will have days you have to make hard decisions and days the doctors have to make the hard decisions for you. You will have days that you want to scream because you can’t understand why this happened to your family. Then you will pick yourself up because you have no other choice.
You will feel like your baby’s medical team is more of a parent than you are as they are telling you what the different cries mean or the way your baby likes to be held. You learn that you can’t plan or anticipate anything and as hard as this was for me, you just have to take it one day at a time. You will feel so sad that the majority of your child’s first months of life will be spent being poked and prodded for lab tests and assessments and will lay in a crib alone in a hospital all day instead of at home in your arms, and that they may feel more comfortable with their favorite nurse than they do with you. It’s heartbreaking to look out the window at the sun with anticipation of the day, your baby could go outside to feel the sun’s warmth on their face or a cool breeze.
The week of Christmas, I received the news that my son would be able to come home. I was so excited that I could finally answer the stabbing question “when will they come home”, but it was bittersweet that my daughter would remain in the hospital alone as we continued to work on her feeding. I remember one of the NICU nurses telling me that the last few weeks are sometimes the hardest. You are ready for you baby to come home and over the NICU experience and just want to try and hurry up the process to get home.
This resonated with me as I became frustrated trying to get my daughter to take a bottle or breast or anything. She wouldn’t wake to feed or would eat very little. I tried to play games, sing songs, hold her different ways, try different bottles and nipples…anything to try and get her to eat so we could just go home. There were days where it felt like she was finally getting it and then the next day she wouldn’t eat anything.
The decision was finally made to transfer her to a children’s hospital for a swallow study and evaluation for possible g-button. The teddy bear transport team came with their incubator on wheels to pick my daughter up to transport her to the downtown hospital. It all seemed to happen so quickly that I wasn’t able to say goodbye to the family I had made at the NICU.
When we arrived at the new hospital NICU everything was different, all the processes and rooms and people. I felt overwhelmed like I was entering the NICU all over again. The people I had grown to trust with my babies weren’t there and the hospital seemed so big and impersonal. I think my husband felt the same way when he would visit and feel somewhat lost as to who everyone was that would come into our daughter’s room. I had to remind myself that some of the sickest babies are the ones that come to this hospital and by their standards our daughter was probably one of the healthier ones at that point.
Although we were in what seemed like a foreign space, I was there every day trying everything I could convince the nurses and doctors to try to get my daughter to eat. After a month of pleading and convincing the doctors to give my daughter more time, we finally made the decision to move forward with the g-button surgery. Yes, I wanted her to go home and simply saying yes to the g-button probably would have gotten her home earlier, but I was pulling for her to figure out the whole eating thing. I hated to think about her being put under for a surgery and was scared about her ever learning to eat and what her life would like if that was the case.
157 days after giving birth, my family was finally all under one roof where I could cuddle them anytime I want, learn their different cries, and be the one to put them to sleep at night. The journey was exhausting and nothing I would wish upon anyone, but if it had to happen to a family, I’m glad it happened to ours. After being born at 23 weeks 4 days by emergency c-section and months in the NICU, Lane came home on oxygen and Grace came home on oxygen and with a g-button.
I would imagine any new mom is terrified when she brings her first baby home from the hospital. I mean, it’s not like the hospital sends you home with an instruction guide. Bringing twins home with wires and tubes certainly intensified my anxiety, but my husband Joe always assured me that we could handle it. I kept thinking, hey…at least we’re all home now. This is when we get back to normal life, right?
Our twins were both home in January, so as hard as it was, we had to ask family and friends to stay away from fear of RSV. We let them know that hopefully once RSV season was over, they could finally meet our sweet babies. Well, March 2020 changed everyone’s lives across the globe with the introduction of the COVID-19 pandemic.
Our family remained in voluntary lock-down for pretty much the next year, only allowing select family members to come see our babies. Both our son and daughter were receiving therapy through Early Childhood Intervention services and the therapists quickly became our new family as there were some weeks where they were the only other people we saw. Even though we were now home from the NICU our family had to continue to learn new medical terms and work with doctors, nurses, case workers, and insurance companies to advocate for their continued health and success. I truly feel that our ability to educate ourselves and advocate for our babies was critical to the level of care and ultimately their health outcomes.
Now our little warriors will be turning 3 years old shortly. Both are off oxygen, and our daughter eats anything you set in front of her. I know the journey for both is long from over as we continue to work with therapists and do everything we can, to ensure they aren’t developmentally behind. It still amazes me today, when I think back to the first time I saw them with gummy bear like skin and eyes fused shut and how many times their stories twisted and turned and could have ended up a million different ways.
Megan Ueckert shares her pregnancy and NICU journey with Graham’s in this special series. This is part 5 of 6.