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Challenge: NICU Parenting

Little girl

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Lillian is my third child, and my first girl. We were all excited for her to come into the world but not as quick as she did. I was 34 weeks and one day along in my pregnancy when my body went into early labor.

She was born with a squeak and taken to the warmer before I could even get a single glimpse of her. She was breathing though which at that point was my biggest fear. In all of my readings her lungs wouldn't quite be ready for the real world. Her having trouble breathing is one hurtle we never had to face.

Lillian was big for her gestational age at 5lbs and 1oz. She came early for a reason, though. Her intestinal system wasn't fully formed. We had weight on our side and good lung function.

Her third day of life they performed surgery on her to fix her lower bowels. The medical term they used was a jajunal atrasia. Then she was on a ventilator for a few days. My little bug (Lilybug as we've come to call her) is a fighter.

I wrote letters to her to help me through the times I wasn't with her. Because she wasn't my only child, she has two big brothers at home who still need their mom. The hardest thing I think I've ever done in my young life is choose who to be with. My big boys or my little girl who I had just started to get to know.

The boys understood though, they understood their little sister needed mom and that she wasn't well. I had the great Fortune of my parents and husband for support and help.

Day in and day out I spent at the NICU with her. I did everything I could for her that I was able to do. Changing diapers, swaddling skin to skin. I got to know the nurses and the doctors. The wonderful people who would be there when I couldn't. I have a seizure disorder and because of the meds I'm on I couldn't breast feed, I couldn't pump. It was frustrating.

In the evening I went home and did my best to be a present parent to my other two children. It's hard being separated from someone who was nestled under your heart for so long and needed you.

Then after weeks of waiting and x-rays with contrast she started feeding. It was my first glimpse of hope for bringing her home.

Two steps forward and five steps back.

There's a statistic or saying out there that says most accidents happen when a person is about 5 minutes from their destination. That's what this felt like. Lillian had started throwing up blood. It was discovered she had contacted NEC. Necrotizing endocolitis. She had an infection in her bowels that if they didn't treat quickly and aggressively with antibiotics it would kill her digestive system.

I couldn't hold her, I could barely touch her. I put my finger in her little hand and she gripped it. That's how I spent every day for two weeks.

She was on fluids and lipids to maintain her weight. Lillian was on a bili blanket for a while too.

Every six hours they took x-rays to make sure the NEC wasn't progressing to the point of emergency surgery.

She had a blood transfusion in the middle of all of this but I think it was one of the reasons she was able to fight it.

Lillian, my little Lilybug fought it though. She fought it and came out on top.

After nearly eight weeks of tests, x-rays, learning how to feed her, and getting her up to feedings that gained weight with no aid from lipids or fluids she finally came home. A whopping 6lbs and 8oz. She was still smaller than her brothers were when they came home.

We've kept in contact with some of the nurses we got to know and with some of the other NICU parents who had their little one there at the same time.

I still write letters to Lillian. I'm compiling them to give to her when she's older.

Today Lillian is almost ten months. At her last weigh in she was 18lbs and 14oz. She's crawling and eating pureed food. The only developmental mile stone she's behind on for non-adjusted age is the type of food she gets. I'm perfectly fine with that. She's working toward solids she's just not there yet.

She used to spit up her formula, sometimes even half of what she ate. That's because thanks to her bowels she has an over active reflex, but it's gotten better. Every month less and less comes up when she burps.

Lillian adores her big brothers and they adore her. She's their little princess.

I've read NICU stories that are heartbreaking, some that are all these incredible hurtles these little fighters have to cross and then there's mine. I'm so thankful for my NICU team. I am so thankful that they were there for my little bug when I couldn't be.

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