Life with a Preemie

This blog post was actually inspired by Arick.

Let me explain.

When I set forth to do this (blog, write, share), my intent really was to gain healing for myself. I’d been thinking about doing something to tell our very unique story for some time, and I was encouraged by people who love me to take the plunge. I never cared if anyone read my ramblings. I still don’t. But I’ve always shared my posts with Arick and have read him the articles I’ve had featured/published. We rejoiced together as my piece on The Mighty racked up likes by the hundreds. I never meant to write for “outsiders” but I’m now eternally grateful to have had this support. Maybe it took having my blog mentioned to him for it to become tangible. Either way, this is Arick’s contribution…in my words. I hope you enjoy reading it as much as I enjoyed writing it.

The moment you become the parent of a micro preemie you’re slapped in the face with how different life is going to be. Slapped hard. For us, this happened at 10:13 am on October 25, 2013. Arick’s 22nd birthday. From that imposing bedside setup to the sounds and pace of the NICU, it was all new. Avery was in an isolette and had the bili lights on him. His tiny body was too small for a diaper and he was red and transparent. To the right was his ventilator. Life support. For five weeks we watched that beast keep our son alive. We waited patiently while the oxygen percentage went from 100% at times to 21% (room air). To see the breaths per minute decrease and see him begin taking some on his own. To his left was his IV. I remember the first time I saw him he had a total of 6 pumps running. Right above that, mounted on the wall was perhaps the thing we feared most- the monitor. That thing could strike fear into our hearts quicker than anything else. When the alarm would sound we’d whip around to see whether it was his heart rate, blood pressure or oxygen saturation that caused the shrieking. It would be at least a couple of months before we’d trust the nurses, and ourselves, and take their advice. Look at the baby. If he’s not breathing you’ll know. So…how’s that different from having a term baby? Perhaps the appropriate question should inquire how ISN’T it different. Healthy, full term babies go to the nursery and generally don’t require isolettes, monitors and IV’s. And that’s just the beginning.

Those termies are so damn big. Pounds. More than one, can you even imagine? I often say that we’ve worked hard for every single ounce that Avery has gained. When he was born he weighed 540 grams. That’s roughly 19.28 ounces. Less than a bottled coke and a full ounce less than a standard loaf of bread. It would be over a week before he gained anything. Birth itself caused him to lose weight. Just how much I was scared to ask. But I know that he was most likely less than a pound. So while term babies are measured by ounces and pounds….there we were measuring our son’s weight in grams and ounces. Nothing was more disheartening than those days where it seemed like he’d never gain another 28 grams and thus, another ounce. I remember telling both Arick and Avery that he WOULD be two pounds by Thanksgiving. In his very first act of defiance he then stopped gaining weight at all. For 10 excruciating days he was 1 lb 14 ozs. Then came that magical day that he reached 2 pounds and within a few more days he actually doubled his birth weight. Thanks, son. A part of me will always feel compelled to do that mental calculation to figure out how many grams he is. NICU math, I call it.

Sometimes I feel like I could write the same thing 100 times and still feel like I want to write it 100 more. I don’t want to be completely repetitive so I’ll go with milestones next. I’ll just compare MY two children.

Rolled over:
Abby- 4 months
Avery- a true, intentional roll- 12 months

Said mama/Dada:
Abby- 5 months (dada)
Avery- 14 months (dada)

Crawled:
Abby- 6 months
Avery- 17 months (army crawl)

Pulled to stand:
Abby- 8 months
Avery- 17.5 months

Stood unassisted:
Abby- 10 months
Avery- can’t yet

Walking:
Abby-10 months
Avery- can’t yet

Said a simple sentence: (more milk, eat more, me go)
Abby: 1 year
Avery: can’t yet

I’ll stop there because at this point there will no longer be a list of things Avery can do. Term, healthy babies generally fall within a typical time frame under which they’ll accomplish these things. With a micro preemie you wait forever to see progress. Milestones should be considered instead as inchstones. Every feat will be a great one. So we celebrate them enthusiastically.

Nutrition. This is what prompted Arick to say, “You should write a blog post about this.” He was providing Avery his second serving of full-fat pudding in a day and found it amusing. With most children you’re very careful about fat and sugars. Not only do you want to keep them as healthy as possible but it’s so important in giving them a healthy basis from which to develop their appreciation of food. Avery gets butter. Lots and lots of butter. And cream in his potatoes and macaroni. He can have as much pudding as he likes and we encourage him to try different add-ins such as syrup, dressing and sauces. Most children don’t need a lot of these highly processed and calorie laden foods but they are perfect for ensuring that Avery gets all of the calories he needs. You see, his high tone from his cerebral palsy alone burns calories even when he’s completely still. So we have to make up for that. If he needs 900 calories a day we try to add in at least 2-300 extra by way of fats, sugars and oils. In this way, the top, “only sparingly” portion of the food pyramid has become the most important to him. This isn’t to say that he doesn’t eat healthy. He loves vegetables and fruits. His just might be a tad more palatable than yours!

Instead of having play time with other kids his age- remember, he should be running and playing at 19 months- Avery has therapy. Three times a week, soon to be four after his Botox. Physical therapy to help him learn to walk and strengthen his muscles. Occupational therapy to help improve his fine movement such as those required to feed himself and to encourage him to use his left arm in play. I’ve become the stand in therapist. Instead of allowing him to entertain himself with play alone we spend most of our time working on exercises that I know will be beneficial to his development. It is what it is, so much so that it’s natural to all four of us. I think we’re all equally dedicated to Avery’s betterment.

New parents love to show off their little bundles of joy. We couldn’t do that. We weren’t able to invite people over to meet him and he’s only now healthy enough to be around small children. When we left the NICU we brought home a tiny immunocompromised baby. That meant we had to limit his contact with people and keep him away from anyone showing signs of illness. We just last month made it through his second RSV season. And guess what? Our precautions worked. Avery has had 2 colds in his 19 months. That’s it. And he got one from Arick and one from myself. Now that it’s summer and he’s almost two our world is opening up. He saw a two year old running wild at Texas Children’s last month and he was in awe. He just wanted down so he could chase him. I can’t wait to see him actually be able to interact with other kids his age. Developmentally his age, I should say.

He’s roughly the size of a typical 9 month old. He has no waist at all so nine month shorts just slide down him. We have only had to buy him a partial wardrobe once, for size 9 months. He’s just a little bit! When people ask his age and we tell them we watch their looks of confusion or shock. I used to tell them why. That got old fast so now I just smile and say “yep, he’s little!” Months ago I’d have given the spiel…”He’s 19 months but he was born 4 months early so he’s 15 months adjusted…yada yada” but now I’m content without that definition. Now it’s the question of why he can’t walk or talk that requires explaining. The medical terms CP and PMG typically thwart further inquiries. He’s small…he has cp…and pmg. And he’s perfect.

We long for the day when these differences will no longer consume us. When I don’t mentally calculate his weight into grams and I don’t put butter on his crackers. When we don’t have to wait forever, through months of therapies, to see the smallest of improvements. We want to feel like carefree parents and not nurses, therapists or doctors. The changes he’s undergone in just the last six months are mind blowing, though. We have so much hope where for so long we had none. So if the last 19 months have taught us anything, it’s taught us that that day will come. And we can’t wait.

My termie.

image

My preemie
image

Two completely different worlds. I wouldn’t trade either.

Happiness

Laying here tonight I felt compelled to write. My mind is always busy. So busy that at times (like right now), it isn’t possible to turn that switch off and relax. At any given time I have many things I could write about, talk about…I could go on forever. But tonight it’s happiness. Contentment. And the journey it’s been to get here.

I think about the Steph of a year ago and I’m almost disgusted. I shake my head in silent disbelief at the memory of who I was then. A few months out of the NICU, the scars were still fresh. While Avery was there I was strong, I had to be. But I was all the while making a mental list. A list of what I could be angry about later, when I knew my baby was safe. At those who I felt contributed to my illness in one way or another- the stress I was put under. At anyone who I felt wronged me, wronged us, during those long 16 weeks. The people who promised to visit and never did. And it didn’t stop when we walked out the NICU doors that final time. Once home I felt contained, stifled. RSV season at it’s peak, tied down with oxygen and monitors, we rarely ventured beyond the four walls of my bedroom. I became a shut-in. I think, looking back, that single solitary thing- isolation- was the catalyst of my anger and depression. It was hard. Not as hard as the NICU but hard in an even more acute way.

At home there were no nurses, no doctors. No Arick. He went back to work immediately. I’m grateful for that, the seamless transition. There would be no weeks or months of wondering how we’d survive. There was just me, at home, sad. Do you know how hard it is for me to admit this? To admit that after God granted me a miracle I still wasn’t happy? I was scared. Avery slept each night in my arms where I could feel his every breath rise against my chest, our heartbeats in tandem like they should have been for four months longer than they actually were. We got through those very long early days together. Rarely did we leave the comfort of my bed. If we left the room we’d have to move his condenser because we only had 50 feet of tubing. So we stayed there. And I grew more depressed and more angry until I started lashing out at some and completely withdrawing from others. I felt alone. At that time I had no one to talk to. I didn’t know another mother who was going through anything like I was. So I couldn’t complain, couldn’t vent to anyone. In my mind I knew what they’d be thinking. After everything, why the hell can’t she just be happy?

I can’t say what the change was or when it occurred but I think it happened around the time we moved here, to Ames. We’d just lost our baby days before and were still heavily grieving that loss. As weeks turned into months and I let go and let God, I found myself waking up happy and unburdened. Avery was getting healthier and my family was getting stronger. Abby was happier than I’d seen her in years. No longer was she in the middle of drama. We were able to eat dinner together every night. We all fell into a routine that we’d before been unable to establish. I think for the first time in a long time we ALL felt like members of a family and not soldiers gearing up for war.

I love it here. I found happiness again here. I became who I was, who I used to be before my two most recent miscarriages and a 111 day NICU stay took so much from me. So much from us. I’m not angry anymore. Most of my anger was unfounded to begin with. I can’t even say I have hard feelings anymore against those that I did. Most of those feelings were born out of a depression I needed time and help to overcome. As we’ve learned, life is short and no one lives forever. We don’t know what comes tomorrow. We still pray every night, just as we did in the NICU, that Avery can get through one more day healthy and without setbacks. Even on the hard days, the ones where I cannot forget that he has an irreversible brain malformation, I want to be happy. It doesn’t mean I won’t be scared, or worried or a giant walking mess some of the time. It just means that I choose to not ever let myself get angry and depressed to the point I change again. God has blessed us abundantly and continues to do so each and every day. I have a multitude of reasons to be happy.

Nobody said it was easy. Lyrics, right? They’re true. Life isn’t easy. But there’s so much reward, so much to look forward to. I regret wasting every second, minute and hour that I could have been happy but wasn’t. I’ve resolved to find it in every moment. When Avery is up at 3 am, thinking it’s play time…as he is right now. When I’m stressed out and scared. When money is tight and we drain ourselves dry to pay for things that the insurance won’t. When we’re so tired, so deprived of rest and time to nurture our relationship that we bicker over deciding what’s for dinner. Even when the house is a mess, the sink is full of dishes and I haven’t brushed my hair in two days. Yeah, especially then.

“For every minute you spend angry you waste sixty seconds of happiness.”

Ralph Waldo Emerson

image

image

My happiness.