Life After The NICU: Preemie Families Share How Their Kids Are Doing Now

Having a child in the Neonatal Intensive Care Unit (NICU) is one of the scariest situations a parent can face. Most families don’t expect to have a baby in the NICU and even if they do nothing can truly prepare you for a NICU baby. Seeing your child hooked up to tubes and monitors and having to scrub in and wear protective gear just to hold them is an experience you will never want to repeat.

I remember when my own children were in the NICU and I wanted someone to tell me how things would turn out. I needed someone to say things were going to be okay and some day my kids would be the happy, healthy, thriving kids they are today. A future without tubes and wires seemed far out of reach. If you are a NICU parent and you are reading this, hoping for a glimpse of the future, I want to give you one.

Of course every child’s situation is different and it’s impossible for your NICU doctor to predict exactly how your child will develop once they leave the hospital but here are a few NICU heroes to show you how good life after the NICU can be. In honor of Prematurity Awareness Month, here are some real life stories and advice from moms who have had preemies:

(My apologies in advance that there are two 28 weekers featured but they’re mine!)

22/23 weeks- Christian

26 weeks- Ginger

Then

Ginger was born at 26 weeks and immediately placed on a ventilator in the NICU. It took six weeks for her to be able to come off of the ventilator and many of her NICU related complications had to do with maintaining her “SATs”– oxygen saturation levels that every preemie parent learns to follow on the monitors.  Her mom Jen says she remembers the nurse telling them that Ginger would show them when she was ready to be off the ventilator and the next day she pulled her cord out. She was ready to be free of the ventilator! Other complications Ginger experienced were related to her feeding and retinopathy of prematurity, a common eye problem in premature babies.

28 weeks- Parker and McKenna

Then

Parker was born weighing under two pounds, but never needed the ventilator. The nurses had warned us that premature boys tend to struggle more than girls but despite their warnings and his small size, he did fairly well. His biggest issues were growing and feeding. We definitely had our ups and downs but his experience was mild compared to his sister who was almost a pound bigger. I guess size isn’t everything!

Now

Parker is a happy, creative 12 year-old. Keeping his weight in line with his height has always been a struggle. He was also diagnosed with asthma at a young age. Aside from physical therapy in his younger years, some asthma complications and the need for glasses, he’s had very few medical interventions since his NICU days. You’d never know by looking at him that he started out as such a tiny guy!

Then

Oh McKenna… my two children could not be more of an example of the fact that no two preemies are alike. She was born a full pound bigger than her brother (which is a lot on a preemie!) but struggled from the get-go. McKenna had pulmonary and cerebral hemorrhages, heart problems, weeks and weeks on a ventilator, sepsis and more. Every time we walked in the NICU I braced myself for what was next and it was usually a setback.

Now

McKenna is a tall, kind, animal-loving 12 year old. You would never know she was the teeny baby in the photo above. She’s already borrowing my clothes and shoes and no one thinks she and her brother are only minutes apart in age. McKenna struggled a lot with her health in her younger years and still has some lingering issues that only a mom (who spent many hours with her in doctor’s offices) would notice! Learning can be a struggle but she is always up for the challenge. She is a definite fighter from her younger days and has carried that personality through to the tween years.

Advice for preemie parents from Parker and McKenna’s mom (me!):

Take it one day, or maybe one hour, at a time. The NICU days can seem long and overwhelming. I remember feeling like my children were never coming home. Looking forward and thinking about weeks and weeks of having to visit them in a hospital just to get the chance to hold them was truly depressing. Focusing on the present moment was a much easier way to cope.

Second, follow your instincts. I still wish I had pushed more to hold my babies and do kangaroo care. Our NICU really limited our physical contact with McKenna because of her significant issues and I do think that had a huge effect on her sensory issues. I wish I had pushed more for what I felt she needed but I was overwhelmed by the NICU environment and trusted what the doctors and nurses said was best.

32 weeks- Livia

Then

Now