We spent almost three months in the NICU with Callie.
And at the time, we were so focused on the end goal—getting her home.. It was a big realization to me that we really only could go day-by-day in the NICU. Sometimes hour by hour depending on the day and we had to also be super focused on celebrating the small victories along the way.
As a NICU alum, here is what I would share with other NICU parents.
Take time off work
It’s a juggling act for parents to care for their NICU baby, manage work, and the myriad of other adult responsibilities. A lot of the time, moms take their leave while dads continue to work, take care of other children, and manage household tasks. However, I highly recommend (if possible–I know everyone’s situation is different) for both of you to take time off work so you can be actively involved in the happenings at the NICU. This will be a time in your life you always look back on and reflect, so be as engaged and physically present as you can be.
In the beginning, Callie’s prognosis was rather grim so both James and I took off time from work to be in the NICU as much as possibly. Once her condition was more stable, James would split his time between work and the NICU. The hospital was close to his office, so when I started back at work (saving as much time as I could for when she was home) he would go to the hospital first thing in the AM so I could rest and not feel like I had to rush to get there. We eventually established a schedule where he would do mornings and I would cover the nights so Callie always had a parent by her side.
In addition to prioritizing connection with your baby in the NICU, I can’t stress enough the importance of prioritizing support and connection with your partner.
James and I were absolute zombies when Callie was in the NICU. Shells of our former selves. Treading water and barely able to keep ourselves from drowning. If I could give any other NICU parents advice, it would be this….
Make eye contact, hold hands, hug, wash the breast pump parts without asking, bring each other coffee, remind each other that you’re doing a great job, and listen whenever the other person needs to vent. Keep an honest and open dialogue with your partner–in a judgment-free zone. Communicate doubts and fears, the realities of what could happen, and the terrifying things that you are almost too afraid to say out loud. We are all so ingrained with staying positive, but it’s hard to do that sometimes, especially when you are deep in a traumatic life event like a NICU stay.
Be actively involved and ask questions
It’s crucial for parents to be actively involved in the happenings in the NICU. Become well acquainted with the nurses, ask questions about the specific medical procedures, and advocate for your baby.
There were so many things that were simply out of our control with Callie’s recovery from open heart surgery and stay in the NICU. We wanted to snap our fingers and make everything ok but we couldn’t. We couldn’t take away her pain, put ourselves in her place, or speed up her healing.
But we could hold her, talk to her, sing to her, read to her, and be by her side. We could do her bath and do her feedings. So be there when the doctors come around. Be an advocate, become close to the nurses, learn what some of the alarms mean (James was a champion at being able to turn off some of them after the nurses showed him how!). At the end of the day, you are the expert on your child. While you aren’t the medical expert, you are there every day and you know what is normal for your child. You’ve watched their monitors, you’ve learned what makes them unique early, and you know what their little quirks are.
You are their parent. You’ve got this.
The NICU will challenge you in unimaginable ways. We had to quickly leverage our strengths and cohesively bring our unique abilities to the table.
James learned about all the machines, the data, and how to read the monitors. Then, he would break down the information into small, tangible, bite sized nuggets for me so I didn’t have to deal with the overwhelming amount of information we had to remember. He did very well communicating with the doctors and nurses while I could focus on being with Callie and connecting with her. I would make a point to make cookies, gift baskets, or bring in Starbucks for the nursing team since my one of my strengths is fostering relationships. I was in charge of bringing in changes of clothes, soft blankets, and NICU approved stuffies for Callie’s incubator because I was a quick and efficient packer.
Hold your baby as much as you can
Many parents might feel intimidated by the fragile state of their baby and by all the machines in the NICU, making them more hesitant to hold their babies. I was completely overwhelmed the first time I tried to hold Callie–navigating the heart monitors, IV, blood oxygen monitor, and the large incision on her chest. I was terrified I would accidently disconnect something and more importantly–I was afraid of hurting her.
Once a sweet nurse showed me how to properly hold her (scooping under her bottom, never picking her up under the arms), I felt much more confident. She also reminded me that Callie was being monitored 24/7, so if something did disconnected, the nurse would be there immediately to fix it.
Hold your baby.
If your baby’s condition doesn’t allow you to hold your baby, find other ways to connect.
Reach out and hold your baby’s hand or touch his body. Your impact, your scent, your touch, all of those things have a positive impact. Find any way you can connect. It’s meaningful to the baby’s development more than anything. It’s also important for you too–building that bond and connection with your little miracle.
Skin-to-skin contact is a well-known practice in the NICU due to its developmental benefits for preemie babies, and one of the most crucial ways to connect. Skin-to-skin contact improves feeding success, increases weight gain, regulates temperature and blood sugar, and stabilizes heart and breathing rates. Research also shows that increased frequency of skin-to-skin contact can reduce the number of days that babies are on oxygen and result in an earlier discharge from the NICU.
You have to take care of your own physical and mental health. I remember feeling SO much grief, despair, guilt, sadness, pain, and loss during Callie’s NICU stay. I would beat myself up if I got a good night’s sleep, I would feel super guilty if I stepped away for a good meal, and I never made time for anything like a coffee with a friend because I thought I should be at the NICU.
But it’s tough for you to be a good parent if you are running on empty. Depleted. Worn out.
The NICU wipes you out physically and emotionally in a way that you can’t put into words and you have to prioritize ways to recharge. To fill your own cup, to take care of your mental health, and to rejuvenate.
Grab a cup of coffee with a friend, take a much-needed nap, go to a therapy session, get a workout in, or do something fun with family outside of the NICU–all of these things are ways to recharge. Remember that prioritizing your own well-being is also good for your baby because they feel your emotions and stress.
And I will leave you with this one final piece of advice……
When you and your baby are home, it’s a good reminder that moving forward, there will be an opportunity to make the situation meaningful. Our time in the NICU was one of the most traumatic and scary times of my life but I have been able to see how I have been able to impact others by sharing our story and experience. I can help others, provide support, let our story be a survival guide for other parents and provide a shoulder to cry on.
Our experience, although traumatic, has also showed me that if I hadn’t gone through it–I wouldn’t be able to advocate the way I do now.
As always, we’re sending love and light on your journey.
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