Read below as Cayden’s mom shares her story.
Let’s start from the beginning, can you tell us how you learned about the pregnancy and your initial reaction? I was already a mom to Grace, 2, so we were wanting to add to our family!
When did you find out that things in the pregnancy were not going perfectly? Did you know you would have to spend time in the NICU? I’m a Type 1 diabetic and an older mom (37 when delivered), so I anticipated a day or two in the NICU (similar to Grace) to make sure Cayden’s blood sugars stabilized. I had also had preeclampsia with Grace. I anticipated delivery early but closer to 35 weeks, but not 25.
Can you share what you are comfortable with on the delivery of your baby? I woke up with back pain in the morning and took a shower. I started feeling contractions and luckily new how to time them given Grace. They were pretty regular, but we assumed they were Braxton Hicks. I called the doctors, and they told us to come to CMC to get checked out. We again assumed it was no big deal and even brought Grace with us. Once I got checked in it was clear I was in labor. The team tried to stop labor with medication, but unfortunately it did not work. I checked into CMC at noon, and Cayden was born via emergency c-section two hours later. It all happened so quickly. Cayden was “big” for a 25-weeker at 2.4 lbs, but his lungs were severely underdeveloped.
What was the scariest day for you in the NICU? I think seeing Cayden for the first time was very scary, I mean what does a baby at 25 weeks even look like? We had two stable days and then had a very bad day where Cayden was experiencing potential seizures, dehydration and breathing issues. The nurses tried multiple times to get a pic line in him and failed. I remember falling on the floor of the NICU bathroom crying. We thought we might lose him. When the NP walked in to tell me they finally got it in, we both hugged and cried. It was a tough tough day.
I know you also had a toddler at home. How did you handle going back and forth between the NICU and home? We were very lucky in that my parents had just moved to Charlotte, and Grace was in daycare. I would drop her at daycare and go to the NICU from 10 a.m. – 3:30 p.m. most days to get two cares. Matt was with me initially but then had to go back to work. He would go in the evenings after work, and we would try to go together at least once a week. I was fortunate that I worked for myself and reduce my client load and worked in the hospital library whenever able.
Tell us about your NICU nurses and doctors. NICU nurses quickly become family, and we still stay in touch with our primary nurses. It gave me such reassurance and comfort to have nurses who knew Cayden, especially at night when we could not be there. You could tell they loved Cayden as much as we did. We are incredibly grateful for the amazing care we received at Levine Children’s Hospital.
How long were you in the NICU what was it like when you heard the words “you will be taking Cayden home?” We were at LCH for 113 days. I actually kind of freaked out when I heard we were coming home, I think I cried. We were so excited but I was nervous to care for him myself. We had an incredible tribe that all of a sudden was gone. The most amazing thing, was having Grace meet Cayden in the hospital lobby – 113 days later. Once we got him in the car and all headed home it was incredible, the NICU days are long on you emotionally and physically and having him home was just amazing. I worried less than I thought about not having monitors and a care team once we got home.
What was the biggest challenge that you had to face for Cayden when you went home? I think for us it was just the fear — fear that something would happen to him. You are so used to the monitors, nurses and doctors that you can doubt your own ability as a parent. We continue to have some feeding challenges, but he will get there in his own time with therapies.
Did you have a lot of fears or anxieties regarding germs once you brought your baby home? We did, we joke that the NICU actually prepared us well for COVID. We were discharged in January and then when COVID became more of a reality in March we pulled our daughter from daycare. We’ve been extremely cautious which has been challenging. We joke that we’ve been isolated for over a year now, but in reality, that means many of our friends and family members have not even met Cayden. The risk of COVID is just not worth it to our family.
When did you know that Cayden would need extra therapies? What therapies is he still in now? I think this part of the NICU experience is pretty confusing for parents. For awhile you focused on just survival, then coping in NICU and then getting home. But once home I think it’s pretty confusing as to what to expect. Cayden gets weekly physical therapy and monthly speech therapy. We also recently got a cranial band to help with his head shape. Overall we feel very lucky in that Cayden (as sick as he was) hasn’t needed a lot of extra support.
What does a typical day with Cayden look like now? Really like any other little baby, except our added virtual and in-person therapies! He loves army crawling all around the house to chase his big sister and keeps mom and dad on their toes! He is a super happy little boy.
Any advice you would give another family going through the process? Anything that really helped you get through the experience? For me stories of hope and survival were the most helpful while in the NICU. We would always stare at the photos lining the NICU hallway to find something, anything in common with the babies there that would give us hope that Cayden was going to be ok. My husband googled 25 week baby when I was going back for my c-section and what he read was not good. So we made a pact not to Google anything while Cayden was in the NICU and instead listen and advocate via our healthcare team. Once we left the NICU, I wanted to create a safe place for parents to have community while both in and out of the NICU. I wanted success stories to look at for hope and not fear. So an Instagram page @mynicujourney was created that shares hope, empowers parents and builds community among current NICU families and NICU grads. The response has been amazing.
My other piece of advice would be to give yourself a break from NICU life. It was so hard for me to not spend all day with Cayden but mentally and physically I was beating myself down. Seek therapy to talk about your NICU experience, anxiety and PTSD affects so many NICU parents and we need to make it more normal to talk about and get help. I had a panic attack in the NICU and was embarrassed at the time to talk about it. We need to do a better job of supporting the mental health needs of NICU parents and normalize these experiences.
I know you are still super involved with helping the NICU is there anything you can help share that we can be aware of to help out the NICU or how can we keep up with your story? Would love for you to follow us on Instagram @mynicujourney. We are always looking for other stories of hope to share.