2 ages, 1 kid

Sorry, Peeps. I know it’s been a while since I’ve written. And I’d like to throw excuses at you, like “New Mom = BUSY” or “Nothing new to report.” And while yes, I am busy, I must admit I’m not so busy I can’t write. And any parent knows that having an infant means new and exciting news daily, so that excuse doesn’t work either. Nope, it’s me. I’ve been in a funk. I’m struggling with some of what we are dealing with as far as helping Abigail develop is concerned, and my attitude turned from, “We can do this,” to “This is hard… maybe too hard.”

I’m so aggravated by how easy it is to be negative. How simple it is to let the cynicism and the demons take over and make the world dark. I’m even more aggravated at how difficult and trying it is to stay positive. Why is that? Why can’t it be the other way around? The world would be such a better place!!! But, of course, I know the answer. The good stuff is worth fighting for. The prize is sweeter when you’ve earned it. And, most importantly, the effort one puts into seeing the glass half full gives life a value it wouldn’t otherwise have.

So, it is time for me to get out of my funk. And the best way I know how to do that is to write it out. Settle in, folks. This promises to be a long post.

So I know I’ve talked about it before, and described it a couple of times, but I get a lot of questions about Abigail and her “Corrected Age.” So I thought I’d tell you ALL about it, and what it’s done to my world.

First – a simple definition: Preemies born more than a month early are assigned what is called a “corrected age.” It is the age they would have been had they been born on time. It is the calendar the doctors use to benchmark developmental progress. For example: Abigail is 9 months old today. But she is also 5 months old corrected. Her due date was September 18th, 2010. So when we (her doctors/therapists and Anthony and I) discuss things like her size and what she is doing developmentally, we treat her as if she was only 5 months old. This is because we don’t count those months she was out in the world before her due date, because technically, developmentally speaking, the gestational clock was still ticking and she “wasn’t born yet.”

Seems simple enough, right?

I gotta tell ya – the whole “better in theory than in practice” thing TOTALLY comes into play here.

I mean, think about it for a second. We actually used the words, “not born yet” for the 16 weeks prior to her due date. Could you do that? Could you look at your baby, hold her in your arms, and say, “You aren’t born yet” and treat it like it were true? And even more so, could you keep the world around her from having an effect on her like she was still warm and curled up in the womb? Yea – the answer is no. Because while I said those words and pretended she wasn’t developing as a baby, but rather a fetus, it made no difference. She was here. She was ALIVE. And she was developing – being forced to do things that no typical baby could ever be expected to do.

I feel great when people tell us, “You are handling this whole thing so well!.” Thank you – I appreciate it. And for a while, I wanted to do it well enough to hide just how hard and confusing and crazy it all is. But now, I’m sort of over that. I mean, who cares if you all know how hard this is? Who cares what anyone thinks? I never have before, so I’m not sure why I cared now. I guess I wanted that cool “Super Mommy” cape. So, here is the truth. The raw, harsh, I-don’t-want-to-admit-to-it truth. Being the parents of such a one-of-a-kind baby girl is HARD. Harder than either of us ever thought it was going to be. Hard and confusing and, at times, depressing. And hard in ways that no one, even the experts, really “gets.” Unless you’ve been there, there is no way to really understand. (No offense…)

And at the heart of it all, this corrected age business is the hardest part of it. It is so far from the cut-and-dry definition we got in the NICU. The idea that our kid is simply a typical 5 month old is laughable. In all honesty, the idea that our kid is anything typical is just silly. For example: for most things, we go off of Abigail’s corrected age. For a few things, we go off of her real, or “chronological” age. And for some things we “split the difference,” as Dr. S puts it. And there is no real rhyme or reason to which thing falls into which category. For most developmental benchmarks, we use the corrected age – like growth (because at just under 15 pounds, she is in the 40th percentile for her corrected age, but only in the 4th (you read that right) percentile for her real age. 4%. That is ridiculous). But for a few things, like some of her eating and her eyesight, we use the real age. And some random things, like when I can put sunscreen on her, or when she can finally have a non-specialized formula, get random time lines that don’t often make a whole lot of sense. I have Dr. S on speed dial and we talk practically weekly because I can’t seem to make a decision for her without his opinion or approval because I can never discern the right age to apply to it.

And even when I do think I’ve got a system down as to which age applies where, I get thrown a loop! I was SO SURE I knew what the answer would be when it came to moving her from her infant car seat to her front-facing car seat. For sure it would have to be her corrected age, right? Everything else having to do with her size is based on that age. But no, I’m wrong. That one is based on chronological age. 1 year AND 20 pounds, no mater where she is developmentally, we can turn her around to face the front. *Insert the start of Big-Kid-Car-Seat research here*

And, if all of that wasn’t confusing enough, then, there is Abigail herself… the Micro-Preemie that broke the mold.

If I had a dollar for every time one of her doctors or therapists said, “Yea, she shouldn’t be able to do that yet” I’d be rich. I’m not complaining – Honestly, Abigail is a dream. Just an incredible child. She defies logic…Heck, I wouldn’t be surprised if she can defy gravity! So why is this so hard? Well, Anthony and I realized not-so-long-ago that it is because we have NOTHING to compare her to. She truly stands alone.

When it comes to Micro-Preemies the idea is simple: They aren’t meant to survive. Harsh – but true. They survive because medical technology is AH-MAY-ZING. And for the ones that do survive, the idea is that we shouldn’t expect too much, too fast. From day one they’ve told us that it won’t be about IF she has a problem, or a delay, or a disability… it will be WHICH problem/delay/disability and WHEN it will show itself. But Abby’s doctors call her “The Amazing Abby” because she isn’t like that. The illnesses she had in the NICU should have done damage, but they didn’t. She should have needed 90 days at least, to be ready to go home. But she was running out the door at 83 days. Most micro-preemies fall far behind even their corrected ages. But Abigail is on target for most things and even AHEAD for some.

When I do research on Micro-preemies to try and find some common ground, I am always disappointed. Because what is out there is not extensive, and it is almost all negative. It’s text book. Unemotional. Babies that didn’t make it, or babies that are deformed or disabled or something is wrong with them. Occasionally, you get the great story of the Micro-Preemie that did really well – which to “them” means the only problems they had were easily overcome – like eyesight issues (one of the most common) or growth issues.

I have tried SO HARD to treat Abigail as a corrected age baby. But my brain knows how much time has passed. My brain knows that today, Abigail is 9 months old. Any other 9 month old would be giving me a run for my money by crawling, or in some cases WALKING around. Abigail just learned to sit. And while she has rolled over a couple of times, she is by no means a “rolling” baby. She can push herself up during tummy time, but she can’t play with toys in that position yet. We’ve discovered that her upper body is weak… and not in the normal “baby” way. As in, her muscle development is taking longer than normal to get strong enough to hold her ever-growing weight. Her legs are right where they should be, but her arms and shoulders just aren’t. And it is holding her back.

Just last week, we (her therapist and I) found our first signs of a delay. When you watch Abigail interact with an object you can see it in her face. She wants to gran that toy. But she has to will her hands to move with all of her energy. And when she finally does get them to move, it is rarely in the right direction. Only in the last week has she shown any control over what her hands do. And she gets VERY frustrated with it all. Her brain is quite obviously past that of a typical 5 month old. But her body is just not keeping up with her. Where is the section on THAT in “What to Expect: The first year.”? Yea, there isn’t one.

Abigail is ahead vocally – which is great! She can say “Hi” and we are sure it will be her first word… It doesn’t count yet, as she’s never said it in context – she just knows how to make her mouth say Hi. But I know that sooner than later I’m going to say, “Hi Abigail” to her and she will respond with “Hi” right back at me. I’m telling you all now, I will cry. As I do with so many of her firsts. Her firsts seem to be an even bigger deal than it is for most Moms. Mainly because they always come as a TOTAL surprise. Very few of her firsts have happened when we were told they “should.” Some happened early, some happened late, so they always catch us off guard. We never know what is coming next. It’s confusing, and exhausting, quite frankly.

Not too long ago, I emailed my sister-in-law (E) about all of this. She’s an expert in Early Childhood Behavior, so she knows a thing or two… orย  twenty… about this sort of thing. I was so frustrated and felt so alone with all of the “text” out there that I just needed to be comforted by something tangible to me. A baby I knew. So, on my request, she sent me pictures of her own daughter, my niece, at ages 4 and 5 months for me to use as a guide. LORD, I can’t tell you how much that helped.

My niece, (L), has always been ahead of the developmental curve. I knew that when I asked for pictures. I wasn’t looking to compare Abby to L in the sense of “how behind are we?” but rather just as a benchmark. A picture of a normal baby, with a real personality and real growth patterns that I was familiar with, to see what “typical” should look like. Because I had no idea at that moment in time what it should look like. And what I saw in those photos helped pull me out of my funk and back into my happy place! Because L, who was always a little ahead, could have been Abby’s twin! (They do look alike, actually!) At 4 months, L was only a supported sitter, and was just beginning to push her elbows up off the floor during tummy time. And at 5 months, she was standing with help, and rolling like a little rolly polly all over the floor. Admittedly, we are behind that schedule… but not significantly. Take a look:

L sitting at 4 Months:

Abigail sitting at 4 months corrected:

L doing tummy time at 4 months:

Abigail doing tummy time at 4, almost 5 months corrected:

L standing assisted at 5 months:

Abigail standing assisted at 5 months corrected:

L getting ready to crawl at 5 months:

Abigail showing signs of the ability to crawl at 5 months corrected:

And then, there are those moments when we get to hear the experts say, “Woah! That is incredible! She shouldn’t be able to do that!” that keep us going through the hard parts… like this one…

Abigail sits, unassisted, ahead of when she “should.” I know I’ll be ok. Mainly because I know she’ll be ok. And for the things that either come early or come late, or don’t come at all – we’ll take it as it comes. One at a time. Because that is all we can do.

Thanks for listening, everyone!

-Jen

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7 thoughts on “2 ages, 1 kid

  1. Its hard that first year. I remember having a lot of fear about Anthony hitting milestones. And now that he’s 3 and I look back, and I also look at Ashley, He wasn’t really behind at all for the physical stuff. If anything he was ahead in some areas. But I understand the frustration. That first year has so many milestones that happen so quickly and after awhile those slow down some and so does the stress. Anthony’s only issues have been speech and sensory. But in the grand scheme of things, they are minor. He doesn’t have cerebral palsy, he isn’t deaf, isn’t blind, he can out eat anyone I know lol.

    If you ever want to get together for lunch or dinner and chat let me know. As you know, I’ve “been there, done that” and I do “get it” =-)

    • Thanks, Kim. I watch your little guy like a hawk, trying to find similarities between him and Abigail. Thanks for being there for me – You are one of the few who know EXACTLY what I’m talking about. Glad to know it gets easier, and to hear it from someone who isn’t just saying it to make me feel better. ๐Ÿ˜‰ RSV season is almost over! We should get together soon.

  2. Janelle says:

    While our kids were in the NICU we strived to keep our kids alive and to get out of that NICU and run like hell. At that time in our lives everything else seemed like no-big-deal, we could handle whatever was thrown at us later. Just get us out of the NICU! I have my own struggles with Taryn not being here and and I know that it must be maddening at times dealing with everything that makes up Abby’s world. You and I want to jump a hurdle and never look back, but this is so different it keeps coming back and sometimes it seems as though you never jumped the hurdle to begin with. I’m not gonna say it’ll get better because frankly I haven’t lived it and that would irritate me. And I’m not gonna say focus on the positives because really there are just WAY too many unknowns still to come. BUT I know that as soon as you give that stress to God the stress does get better. (Its like magic!). Remember to keep Him close to heal your heart no just heal Abby, He loves you too.

    Love you my friend!

  3. Kristen says:

    I LOVE this entry, Jen! I might share it with a few friends if you don’t mind. I’ve had a really hard time explaining adjusted or corrected age. People just don’t understand why my 16 month olds aren’t walking yet! Some lady asked me the other day “how old are they? 8 months?”. Most of the time I just smile and nod and move on. But it would be nice for friends and family to understand us a little better!

    As for Abby’s development, it sounds like she’s doing wonderfully! My kids were really far behind… they couldn’t do any tummy time until 4 months adjusted – because of the reflux. and even when we did, they would spit up an entire feed. so tummy time sessions were few and far between! They sat unassisted at about 9 months adjusted. and started crawling just before 11 months. Now they’re 12 months and are pulling up and have taken their first steps! I have friends with healthy full term babies that didn’t start walking until 15, 16, even 18 months! It’s true that every baby is different! I see it with my own kids. One will be a week or two behind the other in one aspect of development and then they’ll switch and the one who was previously behind will suddenly become the leader.

    Also, I think you’re lucky that you have her in OT already! My kids have been “evaluated” 3 times and have not needed any therapy. Or at least that’s what we’ve been told. I can see slight delays in certain areas – sucking thru a straw and eating/swallowing different textures appears to be a problem right now. But the State of Florida says we don’t need therapy. Thankfully we’re moving, and will be re-evaluated in our new state!

    Well, enough about us! I think yall are doing wonderfully! And I always love hearing how Abby is doing!

  4. Elissa says:

    Well, I’ve already told you everything you need to hear, but I’ll say it again here. Abby is truly amazing and I don’t want to even begin to wrap my head around all the frustrations you have. But you have an amazing support system of docs, nurses, developmental experts, family, and friends that will continue to rally around all of you and support you as best we can. Abby is going to always be just fine because she has you guys. Besides, who wants to be typical anyway? Pretty sure that’s one of her daddy’s biggest mantras. Keep embracing it! And when that funk hits, you know where to find me. =)

  5. nancy says:

    Abby and her medical team are not the only ones who are amazing you and Anthony and your whole family are also amazing and have a lot more to do with Abby’s progress then you know. You guys have been doing a phenomenal job and before you know it Abby will be graduating from the need of corrected age. I also think that you should be the one to write a micro preemie book from a mom’s prespective it certainly sounds like there is a need for such a book.

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