Who Was That (Oxygen) Masked Kid?

Who Was That (Oxygen) Masked Kid?

Updated for 2016! Oooh, ahhhhh.

Today is World Prematurity Day! It is a day to bring awareness to how many kids around the world are born early, as well as a day to celebrate the many accomplishments of preemies and micropreemies errywhere.

In the spirit of learning more about preemies, I thought I would use this post to tell you a little more about my preemie. Most people know he was born early, and lately I have gotten questions from a few people about Joshua and his micropreemie-ness. Sure, it’s a word. Come on. Be cool. I don’t mind questions, especially from people who want to learn more about how to help preemies! So below are the questions I most often get about Josh and the answers as best as I understand them.

*I am not a medical professional. I know, I know; you’re super shocked to learn that info. But, alas, it is true. So there is a good chance I might not get every medical term correct. If you see something that is incorrect, please feel free to call me out in public in the humiliating manner of your choice.*

~How early was Joshua born?~

Josh was born at 26 weeks and 1 day gestation. Because of the circumstances surrounding his birth, we think he may have stopped growing/developing somewhere around 24 or 25 weeks instead.

~How long was he in the hospital?~

115 days, almost to the hour. Not that I counted or anything.

~How big was he?~

Josh weighed one pound, seven ounces, or almost 1.5 pounds if you’re not up on your pounds and ounces knowledge. He was 12.5 inches long at birth. Based on these stats, he has earned the awesome title of Micro Preemie (imagine super dramatic music playing here).

~Why was he born so early?~

Good question. I have no idea. Next!

I kid, I kid. Well, sort of. The truth is that it is by the grace of God alone that Josh is alive today. See, the majority of premature babies are born due to preterm labor, or placental abruption, or infection (this totally unscientific info is based mostly on all the preemies that I know). That was not the case for Josh. We had no idea he was doing so poorly. I had pre-eclampsia, and the doctors determined that the umbilical cord was not giving him nutrition or oxygen on a regular basis, but we don’t know why that happened. On the day he was born, I happened to be at a doctor’s appointment and the CNM saw some warning signs and decided to send me to the hospital, and you know the rest of the story. Or, if you don’t, read it here. It’s super uplifting.

~Will he catch up?~

Joshua is sort of an atypical preemie in that he was sick for weeks before he was born, and consequently spent the first few weeks of his life just trying to live. Every subsequent milestone has been delayed, sometimes by weeks, sometimes by months. So while many preemies catch up by a certain age, he is not one of those. That isn’t to say he won’t ever catch up – he will. But it will be on his own timeline. He will not be rushed, thankyouverymuch.

My answer to this changed recently. Josh will continue to grow and thrive. He will learn new skills and is already smarter than me. He will be (and already is) amazing. That being said, you don’t grow out of some of the issues Josh has. There is no cure or timeline for low muscle tone and CP and sensory issues. But he is working his butt off to be the best version of himself, which I think is pretty great. So, will he catch up? Maybe not. Will he be the best kid ever? Heck yeah. 

~What areas does he struggle with? And who is that lady you are always tagging on Facebook who is working with Josh?~

Josh’s primary delays are physical – he took his first steps two weeks before his second birthday, and is currently working on running. Mostly he just walks fast and swings his arms, which I find adorable, so I don’t care if he ever runs. The lady on Facebook is his physical therapist, who has worked with him his whole life to help him develop his gross motor skills – crawling, standing, walking, squatting, etc.

Josh also struggles with fine motor skills – using scissors, using utensils, opening or closing a book, placing a peg in a hole, using a pen or pencil, etc. He sees another wonderful therapist to help him develop these skills.

He also has hypotonia – basically, his muscles are weak and they tire easily. His arms and legs occasionally shake and it takes a lot of effort for him to do some activities.

Next on the list is cerebral palsy (I like to bury the lede) – this is related to his low tone, as he has a mixed tone form of cerebral palsy. Really, CP is just a way to sum up the delays and low tone I described above. You can read more about CP here.

We’ve also discovered that Josh has Sensory Processing Disorder – essentially, he doesn’t process the signals he gets from his senses correctly. This means that he can break his arm and walk around that way for two weeks and be totally cool (true story, bro), and also means that the feeling of a shirt tag on his skin can drive him nuts. It’s a quirky little condition for a quirky little kid. 

Last, but not least, Joshua has bronchiopulmonary displaysia, or chronic lung disease. His lungs don’t work as well as they should (common for premature kids), but fortunately he is now able to get by without additional oxygen. He was on oxygen for the first year of his life, and you just haven’t lived until you’ve loaded a gigantic oxygen tank into a minivan in the middle of a crowded mall parking lot. Or so I’ve heard. The biggest complications of BPD are that he is susceptible to colds and coughs and these colds and coughs can turn into something worse, like pneumonia, fairly quickly.

~Is he caught up in other areas?~

This is a polite way of asking if Josh is mentally/cognitively caught up to his peers, and sometimes I want to laugh because people seem very scared to ask me this question. Don’t be scared. I won’t bite.

The answer is, yes, he is cognitively on the same level as his peers. He wasn’t always – for a while we were concerned that he had suffered permanent brain damage. But now he is a real boy two three-year-old, complete with the desire to dress himself in the most clashing articles of clothing he can find and an obsession with pirates and trains.

~What is the best way to help him?~

The thing Joshua needs most is patience and persistence. He takes his own time to do things, and sometimes that means he does it quickly and sometimes that means he does it slowly. My goal is to let him do as much for himself as he can, while also recognizing that he tires out quickly and does need assistance in some areas. If he was walking fast yesterday it doesn’t mean he will walk fast today, and vice-versa, so the key with Josh is to push him to his limits while recognizing that those limits do exist. And of course continuing his therapy is a huge part of his development.

~Was your second child premature?~

Nope. That kid hung out for ages.

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You got a problem with that?

~What’s your advice for a mom with a baby in the NICU?~

Take it one day at a time. Or one hour, or one half hour, or whatever you need. Know that while things seem hopeless, they aren’t. Don’t be afraid to accept help or to ask for more help. Remember that you didn’t cause this – it isn’t your fault.

~My friend/cousin/random guy I stalk on Facebook who doesn’t know I watch him sleep has a baby in the NICU. How can I help?~

As far as physical, tangible items – gum, phone chargers, gift cards to local restaurants, gas cards (this was a huge help for us), headphones, cards and notes to let them know you’re thinking of them, a text or email to tell them you love them.

Otherwise, just be there for your friend or stalking victim. Know that some days they will feel awesome and want to talk about their baby nonstop. Other days they will be tired and sad and just need someone to sit with them, or they may prefer to be alone. Don’t take it personally if they don’t respond to you or want to spend time with you – the NICU has a funny way of changing a person sometimes.

Did I miss anything? I’m sure y’all will tell me. Know-it-alls, every last one of you.

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