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

Then

Christian and his sister Audrey were born at 22 weeks and 6 days and he was immediately placed on a ventilator. His mom Abby shared, “Christian’s complications were endless it felt.” He had heart surgery at 2 weeks old, he was diagnosed with necrotizing enterocolitis or NEC, a disease that affects the intestines, and also had a hernia that ultimately required surgery. Little Christian was transferred to another hospital during his NICU stay where he had more procedures, including one to stop his retina from detaching. “Every single day was touch and go.” according to his Abby.

Now

Christian is an amazingly strong four year-old on the autism spectrum. He is nonverbal and cognitively impaired. He also has continued issues with his eyesight and many sensory issues. His new baby sister Irelyn recently joined the family and he is working hard at interacting with her. His mom says “It doesn’t come easy but he is trying!”

Advice for preemie parents from Christian’s mom:

“What would I tell a parent in the NICU now, is that I know it can feel hopeless. I know the weight of the world seems to be on your shoulders. You’re staring at your baby in that incubator and every instinct you have is to hold your baby. I have been on both sides of the journey of the NICU. I have held my daughter as she took her last breath and I have carried my son out of those doors after 4 long months. It’s ok to be angry and it’s ok to cry. Just remind yourself that your baby is fighting, so you have to fight with them. You are so strong, never forget that! You’re going to feel that you need to be at their bedside every minute. You have to give yourself time to decompress. Go have dinner, take a shower. Give yourself time to breathe.”

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.

Now

Jen said Ginger’s development has been fairly typical despite her tough beginning. “Ginger has nothing that I can for sure link to being a 26 week preemie. But there are a few things I suspect. She’s quite thin, always has been. She has a hard time paying attention. And she really struggles with math. But those could just be who she is, too.”

Advice from preemie parents from Ginger’s mom:

“I would tell parents with babies in the NICU to be there as much as you can (but not to feel guilty when you can’t. We deal with enough misplaced guilt). At our NICU we saw many babies who never seemed to get a visitor. Ever. And we were there every day, all day (she was our first child). Also, if you can, visit your baby on the night shift sometimes. There’s a different feel to the NICU at night. Lastly, I would say, talk with and listen to your baby’s nurses. As amazing as the doctors are, the nurses are ones who spend the most time with your baby and ‘get a feel’ for them. And they were always happy to talk with us, the minutiae, everything. Final bit of advice – bring your own baby nail clippers. And bring sleepers with snaps, no zippers.”

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

Livia was born at 32 weeks and 2 days after her mom was diagnosed with preeclampsia. She spent three weeks in the NICU with mostly respiratory issues. A CPAP was used to assist her breathing. Livia had an IV and feeding tube to help her maintain her nutrients until she was able to bottle and breast feed.

Now

Livia is now a vibrant, sweet, almost-13 year-old. Her mom says that she met all of her milestones soon after coming home from the NICU and has had no long term complications from being born premature.

Advice for preemie parents from Livia’s mom:

“Try not to feel guilty, nothing you did could have prevented the baby being born early. Liv was evicted as I call it since I had pre-eclampsia and HELLP syndrome. I had a lot of guilt at the beginning that I could have or should have done something to prevent it. Also you are the Mom, no one else can replace you. Your baby knows your smell and sound and they recognize you . I was so worried I wouldn’t bond with her or she wouldn’t bond with me. Kangaroo as much as you can or the baby can tolerate!”

34 weeks- Sawyer

Then

Sawyer was born at 34 weeks after the risks to putting off my preterm labor became too high. Apparently my body was not interested in a full term pregnancy. His main issues were breathing and feeding. He had a nasal cannula to assist his breathing and a feeding tube until he was able to suck, swallow and breathe well enough to take a bottle or breastfeed. We brought him home to a very noisy house after 12 days in a Special Care Nursery.

Now

Sawyer is my full-of-life, youngest in the family. He has no long term effects from being premature. He likes to be early for everything and we’ve talked about the fact that his early arrival goes perfectly with his personality.

Advice for preemie parents:

Having a 34 weeker was a completely different experience from having 28 weekers but still difficult. When they are born closer to newborn size they look like they should just be able to come home. As much as you want to reach through that incubator and take them home with you try to trust the process. They are right where they need to be for the time being. I know the days seem long but they will be all yours very, very soon.