NICU Mom Shares Her Journey

In our continued recognition of National Prematurity Awareness Month, we asked one of our NICU moms to answer a Q & A regarding her current journey. Janelle agreed – hoping her responses would help another family experiencing the same thing.  Her daughter Isabella Rose was born at just 28 weeks gestation in August 2010, weighing two pounds, two ounces.  This strong, beautiful baby girl is still growing in our NICU – with the support of her loving family and CHOC staff.

What brought your child/your family to the CHOC NICU?

After about a week of feeding in the HOAG NICU, Isabella’s tummy was distended, and an X-ray revealed a diagnosis of necrotizing enterocolitis, a serious infection of the intestinal wall. She was transferred to CHOC Children’s Hospital that same night, in case she would need to have immediate surgery.

Briefly describe your experience dealing with a child in the NICU.

Bella is my first child, and her early arrival was a complete surprise during an otherwise perfect pregnancy. In the beginning, I was in shock, I had a hard time talking about what had happened and even getting out of bed to go see her the first few days, it was all too surreal. Once I was able to see her face and hold her, though, the bond was instant.

They call the first couple weeks the “honeymoon phase” and she did so well that the nurses were calling her a rockstar and telling me she would likely go home early. I was, of course, excited but also holding my breath a little for any upcoming surprises in the long road ahead.

I wish I could say that made what happened next easier, but it didn’t. I don’t think there is any way to prepare for having your tiny, but growing and healthy baby suddenly end up in a critical “touch and go” status.

During the next three months at CHOC, our daughter would go through one hurdle after another. Her vitals would fall steadily for days, then the doctors would do something to help her turn the corner, and she would recover faster than I really ever thought possible, more than once. She was on multiple types of ventilators, had three surgeries, half a dozen blood transfusions and she fought through it all with such grace and strength, it took my breath away.
What are things you’ve done to cope with having a child in the NICU?

I began a journal about the experience, dedicated and written to Isabella, so that when the time is right, she can hear about her dramatic entrance into the world from my perspective. Perhaps it will be when she becomes a mother herself, or maybe I’ll use it as a reason for why she can’t date until she’s 21.

I combined this journal with photos and video we’ve taken of her and put together a website to keep friends and family updated on her status. I’ve also gotten much more spiritually involved in my community.
What kind of support have you received from the NICU team?

The nurses and doctors became part of my family, and the rest of the hospital staff from the valets, to the security guards, to the receptionists became my best friends. Everyone is there for your child, and you feel truly lucky not only to be living in this country, but on top of that to be living in this area and have an establishment like CHOC on your side.

What advice would you give to other NICU families?

Everyone will tell you it’s a roller coaster, but you can’t imagine really what that means, and, on top of that, you never want to think that there are more free falls ahead.

One thing I wish I knew ahead of time is how resilient these babies are. They almost seem designed to withstand more than we can as adults, which was a completely foreign concept to me when I looked down at my two pound baby girl.

In the NICU, no one can provide the answer to the one big question: “When will my baby be okay and ready to come home?” The answer to every question will be “it depends on the baby.” But don’t let that frustrate you. Do your research and ask the challenging questions. Every course of action has a potential benefit and risk associated with it. Make sure you know what these are.

You know your child better than anyone, and the CHOC team respects your opinion as a valuable member of your child’s team. You are your kiddo’s strongest advocate, so fight for them.

There is no doubt that this experience changes you forever, as a person and as a parent; your perspective will never be the same. However, it helps to think of it as a crash course of the hardest part of parenting – the worry, the feeling powerless and wanting only what’s best for them. As one experienced mom put it to me – welcome to the club, this is just the beginning – wait until she’s driving!

NICU Families Forever Joined

In honor of National Prematurity Awareness Month, we’re highlighting the compassion and expertise of our Neonatal Intensive Care Unit (NICU) team, as well as our courageous NICU patients and families, such as our guest blogger, Nisha Morris, a former NICU mommy. See her story below:

December 10, 2008. What is the significance of this day, you ask – it’s when my husband and I took our baby home from CHOC. “No offense, but hope to never see you again” we said, as we waved goodbye to the amazing doctors, nurses, respiratory specialists, social workers…even the friendly cafeteria staff. Our daughter Nathasha spent 62 days in the NICU at CHOC. What an experience! We were fortunate to be surrounded by such caring, gifted professionals. Everyone was involved. Everyone cared. Everyone mattered.

There is this connection that is developed in the NICU. This deep bond exists not only between hospital staff and parents, but between families. Each child has their own cheering section, be it through a quiet prayer, a shoulder to cry on, positive thoughts and vibes, motivational talks in a quiet corner at 2:00 am or an expression of understanding as you enter the NICU doors.

The families of NICU babies will forever be joined. It is because of CHOC’s ability to understand the needs of each family and foster a nurturing and compassionate environment.

Nathasha is our little miracle baby. She has Congenital Central Hypoventilation Syndrome (CCHS) in which she lacks the ability to breathe while she sleeps. Despite her early setbacks, she is doing amazingly well and we are proud to call her a CHOC NICU graduate.

November is National Prematurity Awareness Month

In recognition of National Prematurity Awareness Month, check out the wonderful new program at CHOC Children’s which focuses on caring for the unique needs of the tiniest of tiniest babies – those born at less than 28 weeks or weighing as much as a coke can!

The new, Small Baby Unit at CHOC is located in a separate wing of the Neonatal Intensive Care Unit (NICU) and is the only one of its kind in the region.

Click on this article to learn more about what this specialized team is doing to care for these fragile babies: