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Challenge: NICU Parenting

Avery Elijah

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I was 20 weeks pregnant when I looked at my OB and told her: “I feel like I’m getting Preeclampsia again.” I’d had it in my first pregnancy, 8 years prior, and I was beginning to feel those same familiar symptoms. My blood pressure was creeping up, my hands were swollen and I was suffering from recurring headaches. She completely dismissed my concerns, as if I wasn’t knowledgeable enough to recognize signs my own body was showing. “You’re far too early for that. Not at 20 weeks. Try not to stress.”

Luckily, I was also under the care of a maternal fetal specialist. At 24 weeks she placed me on hospital bed rest. My baby was measuring 2 weeks behind and the placenta was showing wear. Oh, and that blood pressure problem. Turns out, I DID have Preeclampsia. Again. I immediately received steroids for the baby’s lungs but my doctor was hopeful that maybe we could get a few more weeks in. I was to eat 4,000 calories a day and stay in bed except for restroom visits. We crossed our fingers and prayed that this 24/7 monitoring would keep us going. I prayed for that magical 28 weeks when survival chances so drastically increase. It wasn’t to be, though.

On day three of my stay my doctor came early to give me an ultrasound. All night we’d been losing the baby’s heartbeat on the monitor- it was already difficult monitoring such a small baby. I watched her brow furrow as she started looking at the umbilical cord. Not even two minutes in she stopped and said “we are going to have this baby today.” My blood pressures overnight had been all over the place and now came the final straw. The blood flow in the baby’s cord had reversed, meaning nutrients were no longer going to him. He had 0 chance of growing any more. I was 25 weeks and 1 day.

Just before the doctor came in that morning I’d called the baby’s father, Arick, to wish him a happy birthday. He was an hour and a half away at work and began his journey to try to get to me before they took me into the OR. His birthday didn’t cross my mind again until in the flurry of getting me prepped I was surrounded by nurses and said it. “It’s his birthday.” One stopped and patted my leg. “It sure is, you’re going to meet Avery today.” But that’s not what I meant. It was his Daddy’s birthday, too.

Avery Elijah was born at 10:13 that Friday morning weighing 1 pound and 3 ounces. He was a full two weeks behind in growth. Arick walked into the OR while they were intubating him. He missed his birth by 3 minutes. He was able to go to the NICU with him and stay for the first few hours. The first time I saw him, the day after his birth, I stood and stared until hot, silent tears began to fall. What I was looking at wasn’t a baby. This was a red, translucent fetus. How would this child survive? Was it even possible?

Every day that he made it was a victory. From taking off his blinders and earmuffs at 6 days old to his first bowel movement at 2 weeks old. Then his first surgery at 3 weeks to correct his patent ductus arteriosis. He took one step forward and then two back. The roller coaster analogy was entirely accurate. Arick and I learned just how light- and heavy- a single gram was. We also learned how emotionally devastating the NICU was.

There were bad days. So many bad days. Like the first time he stopped breathing and turned blue. All the days he was an ashy color and needed transfusions. The night before his heart surgery when we were pushed to the corner and then out of the NICU while he was bagged. Every time his stomach got sick and distended and he could no longer eat. The days we went home and couldn’t even find words to talk to each other because fear had taken them all from us.

That’s when we had to remember the good days: the days we’d walk in and see he'd gained an ounce (or even two!) or when he’d come off a medication. That day six weeks in when he came off the vent and ten weeks in when he came off CPAP onto the cannula. When he took his first bottle. When he first wore a shirt. When we went to the level 2 NICU because he was now a feeder and grower. When they told us- “get ready. He’ll be home soon.”

He came home on day 111. One hundred and eleven. My tiny little cocoon had metamorphosed into a butterfly. Into a 5 pound 10 ounce miracle. He even came with gifts! Oxygen machines and monitors. We were terrified, but somehow we learned to traverse life as what we became: special needs parent.

He’s four now. He has cerebral palsy. He didn’t walk until he was three and has just begun to talk. We see around 10 doctors and have therapy four days a week. NICU life doesn’t stop when they are released. If only it were that easy! He’s immunocompromised and is hospitalized quite a bit. He’s a fighter and a full time job. We’re exhausted but thankful and blessed.

He started preschool last year and today we had our first annual ARD meeting. His teacher commented that he is so determined. He tries and tries and even when he fails he keeps going. I know, I said. He doesn’t know that he can’t because we’ve never told him he couldn’t.



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