NICU Support: Cole's Story - Shann Eva's Blog

NICU Support

The NICU is one of the toughest, most emotional experiences a person can have. Whether you have a partner or not, co-workers or friends, a nurse or a fellow preemie parent, you must have some type of NICU support to make it through.

No matter how strong you are, or think you are, you can’t do it alone. Some people are lucky enough to have a supportive partner or family to lean on, but even if you think you don’t have anyone, you really do. Whether it be a NICU nurse, the hospital counselor, or a stranger in a preemie forum, there is always someone you can talk to when times are especially tough.

Today’s micro preemie family realizes how important NICU support truly is. It may be hard to ask for help, but anyone in a life or death experience needs any help they can get.

You can be a strong support to your baby, if you don’t take care of yourself first.

I’m so happy to introduce you to Cole, as told by his mom, Brittany.

1. Tell us about your baby.

Cole Anthony was born on 12.6.16 at 10:10pm at 24 weeks 3 days gestation. He weighed 1 lb 12 oz and was 12.5″ long.

2. How long was your NICU stay?

Our NICU stay was 125 days long!

The whole experience was completely surreal and seems like a lifetime ago. The most challenging part of the stay was the first month and a half. Cole was unable to maintain his hemoglobin levels and was given a total of 7 blood transfusions during his stay. He was on the ventilator until mid-January and then on NIPPV for 5 weeks. Getting him off the ventilator required steroids and inhalers (and a lot of patience!) We had many conversations with his neonatologist about the potential to come home on oxygen, but in the end he surprised us all and kicked the cannula to the curb one week before we were discharged.

Cole had a Grade 1 brain bleed and severe ROP which required eye injections at just 10 weeks old. Our eye doctor is one of the few who performs these injections (vs the traditional laser surgery) in the hopes that Cole’s peripheral vision would be maintained with eventual complete regression of the ROP. We are extremely grateful that this was the only interventional procedure Cole had to endure, and we realize how lucky we are that his brain bleed resolved.

He still has an ASD that may never go away, but the cardiologist says this should not affect his ability to exercise/play sports/partake in normal activity as he grows.

What was the hardest part?

The most difficult part of his stay emotionally was going back to work while he was in the NICU an hour away. We developed a routine early on – my husband visited each morning from 6-7:30 am after shift change (he is a dairy farmer and the uncertainty of daily farm responsibilities made afternoon/evening visits unlikely for him). I would then spend the day from 10 am-7 pm at Cole’s bedside with kangaroo time for as long as possible during that time frame.

After starting back to work in February, I was only able to visit from 5 pm-7:30 pm. Not being by his side during the day was heart wrenching – I don’t know how moms with other children at home or moms that live multiple hours away get through this separation. The nurses were amazing with tolerating my crazy phone calls during the day and always kept me in the loop. It helps that Cole was much more stable by this point, and transitioned to his CPAP cannula from NIPPV right before I started working.

3.Do you know what caused your premature birth?

This was my first pregnancy and the whole experience was a dream – I had about 5 minutes of nausea in the first trimester and mostly just felt hungry and tired! I ran a 10k race at 19 weeks pregnant and really tried to stay active.

At 20 weeks, my husband and I got the all clear to go on our planned honeymoon to Thailand. We had the time of our lives, but I got very sick while we were there with some kind of GI bug. We came home at 22 weeks, and had my 20 week anatomy ultrasound which was all normal and very reassuring.

At 24+3, I started having what I thought were Braxton Hicks contractions and called my doctor to get checked out. She worked me in to her office at 10am, took one look at me, and told me to go directly to the hospital.

It wasn’t until I was walking into the ER that I truly felt a CONTRACTION and was doubled over in pain. My first check showed 80% effaced and 3cm. They flew me in a helicopter to the nearest Level 3 NICU facility in Rockford, IL at 5pm, and Cole was born 5 hrs later with natural, vaginal birth in his amniotic sac! I am convinced the sac protected his brain from damage, and was a gift from God to keep him as safe as possible in such a traumatic situation.

4.How are you and your baby/babies doing now?

Now, Cole is 10 months actual, 6 months adjusted. He is meeting his adjusted milestones and growing quickly. He weighs 16 lb and is 26.5″ long.

He started trying foods and has still been receiving breast milk thanks to many generous donations from friends after my supply dried up at 8 months old.

He has been cleared by his cardiologist until 2 years old when he will need another ECHO to evaluate his ASD. He was getting bi-weekly, then tri-weekly eye exams to follow his ROP after the injections but was cleared in August for any worry of ROP damage; he had a vision evaluation in a November when we will determine if he needs glasses or not.

Overall, Cole is happy, HEALTHY, and completely normal, and we could not be more grateful. We gained new family in our NICU team (Cole was in his primary nurses wedding as the ring bearer!)

5. What advice would you give to a new preemie family?

My advice for new preemie families is to lean on each other as much as possible when you are feeling overwhelmed or anxious. I couldn’t have handled our experience without the support I received from my husband. Try to see the good in each day and don’t be afraid to celebrate the littlest milestones – a hand grasp, better scan, or improved blood work. Take time for yourself – a walk outside, funny movie, or dinner out with friends.

This one was hard for me: Allow others to help you without feeling guilty! People really want to help so LET THEM! Don’t be afraid to ask for help and verbalize when you just need a break.

Become friends with the nurses – they will have your back and advocate for your baby when you can’t be there or need support. I joined several Facebook preemie sites for moral support and comradery from fellow NICU moms and also got involved in the Family Support Group for our NICU.

Having a preemie is a rough way to become a parent – but these little fighters make us better versions of ourselves and deserve all that we have to give. NICU moms are one of a kind!

Professional photos by Ryan Schuler Photography and Vanessa Wolff Photography

Thank you so much to Brittany for sharing precious Cole with us. Also, thank you for sharing how important NICU support is.

Please leave any comments or questions below.

Get Social With Me

NICU Support: Cole’s Story