Word explosion

Three weeks ago, Robbie still only had 37 words. They were sporadic, usually only when pressed, and some labeling (kitty, while pointing, for example.)  He babbled all the time, but didn't really say much.
Today Robbie has roughly 110 words. Possibly more, it's hard to keep up.

He's learning to use his words to ask for what he needs. This morning he insisted "off off off" while tugging on his pajama shirt sleeve. He apparently needed to be shirtless. Last night at dinner, he needed "cheese!" It's awesome.

I have loved getting to know him a little more, seeing some of the workings of his brain. I now know that he loves clocks and lights. I know because he points out every single one of them that he sees. Do you know how many lights and clocks there are in the world? A lot. No, I mean a lot. It's cute, but exhausting. He isn't happy until you acknowledge each light or clock he has pointed out. "Yes honey, it's a clock, same as it was 45 seconds ago."

In a really interesting discovery, it turns out that Robbie knows some of his letters. He's been saying "O" for a a week or two. There is a big O from his puzzle mat that he carries around a lot. I figured he'd memorized that it was called an O. Then one day he insisted on having a wooden R from his shelf, calling it by name "Awr!" (These days he's made it a two syllable word- "awrer!")  He loves that wooden R, sometimes needing to sleep with it at night.

Then he started naming all the Bs he saw- on the wall, in books, on signs. Okay, now he knows all the letters from Rob. That makes sense, there are a lot of those around the house. But this weekend, all of a sudden, he was naming Fs & As & Ds- picking them out of a pile of letters or on a page. How can he have 100 words and 6 of them be letters? I've been joking that he's going to be able to read before he can speak in sentences. That's my Robbie; he always does things in a unique way.

With the language explosion, he's definitely parroting everything we say. He doesn't know what everything means, but he retains a lot of it quickly. That works out nicely because it's a good way to distract him. If you really need to get his attention, you just ask him to repeat his ABCs. It's win-win- he behaves and he learns!

I think this about every stage, but so far this is my favorite. Getting to hear his adorable little voice all the time just makes my whole day. I think you should hear it, too.




--Trish

Awareness

Today is November 17. November 17 is National Prematurity Awereness Day. The March of Dimes has asked bloggers to blog for our preemies in honor of this day.

Last year I spoke about what it really means to be a preemie; that a preemie isn't just a small baby, but an unfinished one. All of his systems are underdeveloped leaving him at risk of infection, disease, and overstimulation. But it doesn't just stop when those systems finish developing.

The damage done to a baby born early is not easily overcome. For a baby like Robbie- not "just" a preemie, but a micropreemie- it can often take years before he will be able to catch up from the damage done to him. For Robbie, it means that almost every accomplishment he makes comes with an asterisk. Even when it goes unspoken, the implication is there.

When someone says how big he is, they mean in comparison to the pound and a half he was born at. He still hovers at the bottom edge of the growth charts. He is significantly smaller than children even more than a year younger than him in his daycare class.

When they comment on how well he's eating, they mean compared to 6 months or a year ago when 100% of his nutrition had to be pumped directly into his stomach, not to other children his age. He still has an extra hole in his stomach by which we keep him hydrated enough to live.

When we talk about how active he is, we marvel that he's doing so well now considering a year ago he wasn't even rolling over. Two and a half years later, we still struggle to overcome the damage his body sustained in being born 14 weeks early. He still gets daily medicine to treat his hypersensitive stomach.

We still fight the damage done to his lungs by being born before they were done developing, from the pressure put on them from the ventilator that kept him alive until he could breathe on his own. He takes a breathing treatment of steroids every night all winter because even a slight sniffle goes straight to his lungs causing him to gasp and wheeze. When he gets that sniffle, we double that dose and add another drug to dilate the passages in his lungs so that he can breathe.

He's come a very, very long way. We've gone from seventeen sessions of therapy a month to just 9. We only see one specialist every 4 months instead of the sometimes weekly treks we made during our darkest times. He no longer receives calories or nutrition through his G-tube, just hydration. He's going through a language explosion, beginning to communicate with us with more than just whines or grunts or the occasional sign. But he isn't done yet.

As his mother, I'm not sure I'll ever overcome the anxiety that prematurity brought to our lives. Even if he woke up tomorrow completely caught up, I would still over analyze small things, wondering if it's another symptom of his early birth. When he squints one eye to point at something, his therapists write notes about checking his vision- the effects of the oxygen on his eyes could show up at any time. When he resists a textured ball, it's called a sensory problem attributed to his nervous system experiences too much too soon. As his mother, I know in my head that these are just cute quirks that are part of Robbie, but the fact that they come into question is just another gift that prematurity has given us. I watch closely, balancing a fine line of vigilance and security.

Of course, being a mother to a preemie brings a lot of unique pleasures. Tonight, Robbie sat on my lap letting me feed him bites of steak & carrots while I fought tears of joy. I'm not sure I'll ever stop marveling at the pleasure of seeing him thrive. It's something that parents of children born knowing how to eat take for granted.

Robbie's birth also brought a lot of amazing people into my life. From parents of babies in the NICU with Robbie to other parents I've met online, I'm blessed to be surrounded by parents who also marvel in the small things (and I don't just mean the size of our babies!)

The experience of parenting a child who was born early or spent a long time in the NICU is unique enough that early this year I founded a message board for parents of these babies born too soon. These other parents have been a huge resource for us. While we all lean on and appreciate each other, the one thing we all agree on is that it's a club we wish we never needed to join. We are a sorority whose initiation is worse than any hazing the Greek system could imagine. We all dream of a day when we can close our membership.

Currently one in 8 babies born in the U.S. is born too soon. Each day nearly 1500 families give birth to a baby who will come with extra scrutiny and worry; a baby who comes with asterisks with even a question as simple as "how old is he?" It's a club that's way too large.

So on this day, I ask that you think of our babies. Right now at a hospital near you, a mother is wringing her hands, staring at a monitor instead of her baby's eyes. She's praying they can all make it through the night. She's wondering about today, tomorrow and next year. She's feeling guilty, wondering if she could have done something different. She's looking into the faces of the strangers caring for her not-yet-supposed-to-be-newborn, hoping they know how important that tiny bundle hooked up to all the wires really is.

These worries are real. Many babies don't make it. Many have issues that won't be outgrown. Many will, but only with a lot of hard work and worry.

We are very blessed that Robbie's lingering issues have been manageable. He is expected to outgrow them, though no one can say when. God and medicine, and the March of Dimes, has given us the opportunity to see our miracle's smile and hear his laughter every day. Not everyone is so lucky.

--Trish

Half Baked

I really love to read. And I really, really love when a book makes me nod in agreement or laugh out loud or cry. Even better if I find that I want to highlight a passage (though I don't like to maim books that way!) or read it to the nearest person. I'm reading one of those now.

Even though I usually prefer light reads, fiction of the mystery persuasion, most often, this particular book couldn't be more true life. It's Half Baked by Alexa Stevenson. A lot of you probably know her from Flotsam.

For those who don't, Alexa had 2 miscarriages and then conceived twins via IVF. She lost her son, Ames at 22w and her daughter, Simone, was born just shy of 26. Infertility, miscarriage, prematurity.... that thud you just heard was something hitting me close to home.

I'm sixteen chapters (just under half way) in and I've laughed out loud at least a half dozen times, cried twice and today I annoyed my husband immensely by insisting on reading him a paragraph that spoke especially loudly to me. (He hates when I read to him. Robbie was also pushing his play mower through the house just then, so I was shouting.) It's definitely a good book.

Alexa messaged me a few times after Robbie was born, lending her support to another member of this crappy club. I think we emailed a few times, though to be honest, my memories of the months in the NICU are very spotty. I've followed her blog since then and was thrilled when she was published. I kept intending to get the book, but being a procrastinator, I just never did. Then someone on my preemie board read it and was gushing about its greatness. And then another person bought it and did the same.

Ultimately, we decided to do a book exchange. We started a list and would pass it along as we finished. I added my name. But as more people read it and gushed, I found there was no way I could wait, so last week I ordered myself a copy and felt a little smug that I'd just helped out a fellow IF/NICU-survivor/blogger mom. Then I checked the mail all week waiting for it to come. I was thrilled when it arrived a full day before the USPS told me it would. Way to go postal system!

I started it that night, reading until after 2am even though I had to be up 6. It was a busy weekend, but I've been sneaking away to read a chapter here or there whenever I could. Robbie's lucky he's so cute. Anyone else who interrupted my reading would have been cut in two.

I would still be reading now except that I know I have to sleep at some point, and I decided to stop at the end of a chapter that didn't end with me crying, so sixteen it was. And I should be in bed, but I really needed everyone to know that this book is good. Alexa is a great writer, of course. And man does she have a way of explaining things where I keep randomly wanting to shout "yes! that is it exactly!" even though every other living creature in my home has been sleeping for hours.

So if you're looking for a great book, really, truly, honestly.. go buy it. Just don't expect to sleep for a few days.

--Trish

P.S. no, this is not a paid or otherwise solicited review. I have no idea of Alexa keeps up with my blog at all. She is currently on blog hiatus, so for all I know she's in some horrible place w/o electricity. Really, this isn't even a review because I'm not done with the book yet. But go read it anyway. Seriously.

Cheese

Thank you to everyone with your kind words. It does help to know I'm not alone.
We did have a better day today. Coincidence? Prayer? The lack of oil I gave him yesterday? Who knows. I just know I'll take it.
He snacked well and ate a whole sandwich for lunch. (The rest of the center had taco lasagna, but they made Robbie a grilled turkey & cheese because of the corn. I love them.)Dinner brought panic and pleasure.

I made him some meatballs & veggie bites. He's previously refused to try the meatballs although I was pretty sure he'd love them if he'd just try. He has been braver about new things lately, so I gave it a shot. I cut one into 4 pieces. Small enough to put in his mouth but big enough to need chewing. Apparently he didn't think he needed to chew it and choked. I don't mean gagged, but actual choking where I could hear him wheezing a small amount of air around the lodged food. David pounded on his back as I flashed back to my Heimlich training and rushed over to start. Just about that time, he got it up. I asked nervously if David was sure he was breathing. (Yes.)

I thought for certain dinner was over then, but after David broke the meatballs up even smaller, Robbie proceeded to eat almost 5 of them. We left a few whole and he even nibbled on those. I guess they were big enough he knew he had to bite those.

David and I were having burritos. As we were preparing things, Robbie pointed to each ingredient and wanted to touch it. He refused everything except the bag of shredded cheese. And then he was in heaven. He likes cheese anyway, but I've never seen him stuff something in his mouth so quickly. It was awesome- two handfuls at a time.
After the 4th or 5th refill, I grabbed the camera to record for posterity. I wanted to get him to take a drink of water while I was filming so everyone could see that, too. (He's getting so good at it. He can drink without spilling now! If only he'd drink more than 2 oz a day.) I didn't succeed in catching drinking, but you do get to hear him speaking a little. And you get to see his cute little wink when he points. When he points to something at a distance, he squints one eye and turns his head like "if you just look RIGHT over there..."
It's pretty cute.

Without further ado: Robbie Eats Cheese.






--Trish

Weary

Sometimes when I'm feeling really down and defeated, I go back through my own blog and look where we were a year ago.. or two.
Tonight I was looking for an old post (which I never found, btw) and was reading through some of my NICU days posts. I wish I could say they made me feel better. For once, they didn't.

What I found myself thinking was "man, that sucked." I was also surprised at how upbeat and energetic so many of my posts sounded. I didn't feel that way at all. But that's a story for another day. Today, I just kept thinking how I thought our eating woes would be over once he learned how. How naive, I was.

It's really amazing what a few days of poor eating can do to my psyche. Robbie moves along as energetic as always; a little crankier perhaps, but never tired. Instead it as though he is drawing the energy he needs from me, leaving me exhausted and broken.

It isn't just the eating. There are other things. Some family stuff that has too much backstory to explain, some work stuff that sound trivial when written out but adds to my anxiety level nonetheless. Yesterday Robbie bit me in the face. He was angry because I was singing along with the Backyardigans (he hates that) and his only solution was to lash out. Unfortunately for both of us, my face was the closest thing to his teeth.

It surprised me how much it upset me. I mean, yes, it physically stung for a while. He didn't break the skin but he did leave a mark. That, however, was the least of it. After he'd gone to bed (with a very sullen bedtime routine), I sat in the quiet and cried. Biting is such a typical 2 year old thing to do. Certainly for a 2 year old with a speech delay that keeps him from expressing himself with words. But it felt like pretty much the crappiest milestone ever. Biting is so.... so aggressive. How could my sweet little boy bite me?

His daycare teacher was unsurprised this morning. She thinks he got it from two kids in his class who "are biters." That was a little comforting, but also worrisome. I don't want him to be bitten nor do I want him to bite anyone. I'm hoping that improved communication skills will help. His speech is improving quite a lot the last 2 weeks. We've gone from maybe 40 words to a lot of parroting and spontaneous words. Tonight he pointed to me and pronounced me "Mama!" Man, that felt good.

I wish I could say it made up for the last 4 days of crap, but it didn't. I know it will pass. A good night's sleep would do me a world of good. But I'm writing this from my bed- my brain too swirled with thoughts to settle down.

All night long I ponder and research. I mentally calculate the day's calories. I double check product labels to see which crackers have the most calories. I triple check to make sure he hasn't been eating anything with hidden corn in it, wondering if that could cause the eating slow down. I wish for the billionth time that he could just tell me what he wants to eat. I sneak into his room and watch him sleep, his even breathing and peaceful face reassuring that he is okay for now.

I was reminded today of a time back in the hospital when my favorite neonatologist told me that he wished he had a crystal ball. I might not like what he saw in it, but I would be okay. He might tell me that Robbie would have 4 infections and go home a month after his due date, but after I was upset, I would accept it and go forward. He was so right. I feel that way even now.

If I had a crystal ball. If I could look ahead and see Robbie at 5 or 15 growing and healthy and happy, even if I also had to see ages 2 and 3 and 4 or even 12 & 13 of him underweight and still battling at every meal, at least I could mentally prepare myself for that journey. But there are no crystal balls in life. You would think by now I'd accept that.

I think most days I do okay. But days like today, I'm just tired. I just want him to eat and grow. I don't want to know the entire chemical composition of a miniature Kit Kat bar. I don't want fret about undelivered medical supplies or if the bruise on his back is from a normal play or if maybe it's a sign that he's anemic. I don't want to have to explain a second belly button to children or wonder if the mom at the next table is judging me because my kid is eating Raisinettes for dinner.Sometimes, it all just gets to be too much.

Becky emailed earlier to ask how I was doing. My reply was as simple as I could state it.


Tired.
Beat.
Busted.
Burned out.
Weary.