This Lovely Life

I literally devoured this book......."This Lovely Life" by Vicki Forman.

Ok, well, I didn't actually tear out pages and consume them with a side of french fries. But I read through that book as fast as anything I've read recently, and that's saying something. 2 days, maybe 3 tops. Wanna hear about it? If you had a preemie, you do, trust me.

***warning, spoilers below! If you don't want to know how the book ends.......I guess you'd better go play some games on Facebook, or run to Starbucks, etc while we discuss. :)

This Lovely Life is the story of Forman's twin pregnancy, and delivery at 23 weeks. Her time in the NICU, the early loss of one baby and years of health problems and disabilities for the other. You can imagine that I found lots to relate to in her story.

Her babies (one boy, one girl) each weighed slightly less than my youngest son did at birth. And overall, both of my NICU experiences were "better" than hers were, if you can use such a word. But in Energizer's 11 weeks in the hospital, he suffered through so many of the same things as Forman's son Evan........I was just nodding my head when she spoke of brain bleeds, PDAs, oscillating vents, apnea monitors, the endless variety in the personalities of nurses and doctors, and the constant feeling of fear, dread and anxiety that NICU parents live under.

And out of all of the "yes, I remember, I understand" moments I had while reading this, one of the most poignant was her description of how your child, while in the NICU, never really feels like he's yours. I told K this on the morning after Mr. L was born......."I don't feel like there IS a him" was my response to being asked if I wanted to go up and see him. Forman points out that you, the mother, can do almost nothing for the child, especially at early, critical moments. You can't feed him; he doesn't take feeds yet anyway. You can't hold him, or if you can it's only in conjunction with an artificial schedule and only if a nurse agrees (it's a lot of work for her to take the baby out, after all). You can probably change a diaper, but heaven forbid if you actually throw the thing away without weighing it first. Result: This doesn't feel like your child, it's their child. You're visiting, you're observing, and then you go home or to your hotel and your/their baby goes on about his day and night whether you can be there or not. :(

Forman's book is probably considered controversial by some, and in all honesty it's a little disturbing to me at times too. I can't separate myself from my past, my experiences, so I know that my judgment is skewed, but.......when she tries to insist to the neonatologists that her babies should be DNR, I have a hard time understanding. I don't judge, really I don't, but I know that a DNR would not have been a choice I could have made. But she foresaw a future for her babies that would be filled with DIS............DISabilities, DISorders.........and she didn't know if she and her husband were up to the task. And, they had a preschool-aged daughter at this point, so that was an additional variable to consider.

As the first few days progressed though, they began to realize that a DNR was both impractical and not really what they wanted. After originally telling the NICU docs to discontinue all care (and finding that the docs didn't obey), and learning more about the babies' odds, etc, the DNR request was withdrawn. Forman's daughter lived just a few days, her son lived until age 8 although he continued to suffer health problems, seizures, and the loss of his sight due to ROP.

When I read something from a really good writer, I always run across passages that just "speak to me". Something about that phrase or sentence reaches out and grabs me, makes a connection with me through a deep understanding of where it's coming from, I guess. I've gone back and started to re-read the book, and am marking pages with those powerful phrases on them. Now, I want to share a few of them with you, for the sake of the NICU moms out there and the unfortunate sisterhood in which we find ourselves.

After Forman's baby daughter dies, family members are helping her with funeral arrangements. One day, at her home, Forman allows the phone to ring and does not answer. A family member criticizes, tells her she should answer. Her thought is this: "In my grief and panic, I also resented the fact that Curt still lived in a place where if you were good and honest and right, if you were polite and answered the phone and called people back, if you did all that, everything would turn out okay. Our time in that place had ended." Heartbreaking way of describing how different the world becomes once you lose a child, or are a NICU parent of a child with disabilities.

Soon thereafter, Forman's son takes a turn for the worse and his sats dip drastically. The doctor calls her back to the hospital at night, and she tells the story of what it's like to watch that O2 sats number on the monitor........."this was also the machine that sounded an alarm every time the saturations went below a certain number, usually 85. This was the machine I followed intensely in those first few weeks, as if by counting the numbers, I might also watch Evan survive......I touched my son's inch-long foot and saw the numbers go down even farther......."

Oh how I remember this. I would look at that O2 number and "will" it to go up, or to stay at a certain level and not dip below. I've never concentrated on anything so hard in my life, just focused on that screen and that number as if by the force of my thoughts I could make the number go where I wanted. And all that you want to do, when your child is in distress, is to help in some way, ANY way. You can't pick him up, you can't rock him and console him and make it all better like Moms should do. The worst thing of all is when you do the little you can, like maybe put your hand on the baby's back, head, leg, etc, and the result is that the number goes DOWN instead of up. The guilt of that feeling, knowing that I'd caused a desat due to overstimulation or whatever, will stay with me forever. :(

Part of the book consists of Forman's journal entries that she wrote during those NICU days, and it's a window into exactly what she thought and felt at that time. The August 30 entry goes like this:

"I do fine until I compare Evan to the others, the babies that arrive and depart, those not on a ventilator or oxygen, the nearly full-term babies. Monsters, I call them. Monster babies. My walk to the neonatal unit takes me past the nursery, where a fresh crop of newborns appears daily. Even harder is my glimpse down Labor and Delivery. Mothers-to-be stand waiting for their turn at birth. I remember seeing a pregnant woman the day after I gave birth to the twins and feeling so confused: Why me, why not her? How long will it take for that confusion to go away?

Thirty-two week twins arrived in the nursery the other day--I heard the nurses discussing the mother's labor, how the doctor had planned to deliver them soon. Thirty-two weeks? A whole 8 weeks longer than I was able to keep Evan and Ellie.....To accept all this, everything else needs to fall away: the pregnant women, the full-term babies, the preemies older than mine. In any comparison, I come up short, as does my son. It does him (and me) no good to dwell on this, to resent being so much at the bottom rung, to wish another super-preemie would show up so that I could feel better. Nothing I can do will make Evan bigger and better, able to hold his own against the monster babies. We're alone in this."

Aaah, yes. The comfort of recognition, of understanding, of saying "been there, done that." And no, my sons weren't born as early as Evan, or quite as small, and our "outcome" in terms of health and development was certainly better, luckier, however you want to put it. But nonetheless, everything else has not "fallen away" for me yet. Reading this book helps, because Forman comes to an amazing acceptance of her situation and of Evan's reality. And I do mean amazing. So many people have said to me over the years "I don't know how you do it, I couldn't be so strong" etc. But I feel like I should say those same things to Vicki Forman. I've never met her, probably never will, but I do want to thank her for sharing this story and helping us all to know that we are NOT alone in this journey of preemie parenting.

**Excerpts taken from "This Lovely Life" by Vicki Forman, copyright 2009 by Mariner Books.

autism angels

Have you heard that term before? Not sure where I ran across it first-- probably in an online forum--but I can't get the phrase out of my head today. The best way I can describe an "autism angel" is that it's someone who makes a positive difference in the life of a child on the autism spectrum. Even more so, it's someone who isn't looking for accolades or glory, just doing their job, doing what they consider ordinary, but it's oh-so-EXTRAordinary to us, the families of those ASD kids.

When I stop and look, I can see these amazing angels all around me, and I'm humbled by how fortunate we are. Like the sweet concession stand guy at the minor league baseball game last Sunday night.....or should I say, the NONgame. It rained, and rained, and rained, and we stood there under an awning for an hour hoping it would stop. Dreading the moment we knew was coming, when we'd have to tell Mr. L that the game was called off. And it was, and we did, and he did.........meltdown, that is. Crying, sobbing, almost wailing. He'd asked to go to this game for his upcoming birthday, we splurged for seats right behind home plate, and now there's no game. The concession stand guy motioned K over, and gave him a bag of cotton candy for Mr. L, to try and help us I guess. I can't say that the meltdown was completely stopped in its tracks, but the cotton candy was a definite distraction, and that's almost always good. Bless you, nameless concession stand vendor!

Or how about Mr. L's 2nd grade teacher last year? The sweet young lady who freely admitted that she had to look up what Asperger's Syndrome was after I told her about Mr. L. Out of all of her great qualities, the one thing I can say that was best is that she "gets him", if you know what I mean. She's patient, listens to him even when he takes forEVER to get to the point of a story, and has learned just how to handle him with the kid gloves that are often required if you want to avoid meltdowns. And best of all? After telling me in the year-end IEP meeting that she'd think through the 3rd grade teachers and decide on one to recommend to us, she did just that. Went and spoke to that teacher privately, gave her background info and suggestions, and recommended to the school that Mr. L be placed in that class. :)

That new 3rd grade teacher even earned a spot on my autism angel list! Today, we got a postcard in the mail from her, addressed to Mr. L. It welcomed him to her class, assures him they'll have a "super year" and she is so excited to start, etc. He's been apprehensive, and I've tried and tried to tell him to give 3rd grade a chance, see what it's like before you make up your mind that it's hard, teachers are mean, etc. But after reading the postcard, he said something like "now, maybe I will begin to believe her, that it WILL be a super year". :) 4 sentences on a postcard accomplished more than I have all summer!

I could keep on listing, but I'm going to sum it all up by telling you about one especially priceless autism angel---Mr. L's baseball coach from this season. He's a pretty young guy, single, drives a cool sports car, you get the idea. K and I decided from the start not to "come out" to him about Mr. L, just to go along and see how things progressed. If he needed to know, we'd tell. As it turned out, we didn't tell until after the season ended.

But Mr. L demonstrated his fondness for meltdowns early on in the season, and Coach T quickly realized how close to the edge Mr. L stays.......one strikeout, one dropped ball, and you could be witnessing an unstoppable screaming, hitting, wailing explosion. He took extra care to be nothing but positive and encouraging to Mr. L, even letting Mr. L throw the ball at him after Mr. L was hit by one of the pitches. That broke the spell of the meltdown somehow, and made him laugh, and then everything was ok again.

During the season, in casual conversation, he learned that Mr. L loves Lakers basketball. Coach T had seen the Lakers in person a few years ago, and so he brought Mr. L some of his up-close pictures of Kobe Bryant. And now, that the season is over........well, this week I was told about yet another angelic act from the coach, and I just about started crying. Coach T plays adult softball, and as it turns out, his team plays against the team of Mr. L's former 2nd grade teacher (see above)! So she emailed us, told us she'd seen him, and that he told her the story of the playoff game that ended Mr. L's season. He was the last batter, last out, of the entire freaking season for his team. :( Coach T told the teacher that he was actually praying as he pitched that last ball to Mr. L. That he'd never wanted someone to hit the ball and get on base so badly in his life. I know that's how I felt, but to know that he did too.......

Coach T, your halo is on its way. Not a coincidence, me thinks, that your team was called the Angels. And for you, the concession stand guy, the teachers, the lady at the baseball clinic that gave us a T-shirt during the collapsing-on-the-ground meltdown, and all the rest of our autism angels.......you have my unending thanks and gratitude. Your real reward is in Heaven.

doubting, again

Crappy day with little Energizer today. *sigh* I'm just exhausted from all that we've dealt with from him today, and when days like this come, I start doubting again.....worrying about the future, doubting our decision about medication, wondering how in the hell he's going to make it in "real school" this fall, much less in "real life" for the next 75 years or so. *even bigger sigh*

We started trying meds early last fall, September or October, I think. The first one we tried, Tenex, did nothing for him but make him very VERY sleepy. He was in a gymnastics class and falling asleep while listening to instructions from the teacher. :( Oh, but the impulsiveness, aggression, violence, "wildness"? Still there just as much, or even more it seemed. In November, after he was unceremoniously kicked out of our preschool, I called the ped in desperation and she started us on Focalin. He's tried the 2.5 mg short-acting tablets, and the 5 mg XR capsules.

The thing is, Focalin REALLY works for him. Makes him a tiny bit sleepy at times, but other than that, all we get is good stuff......listening, sitting still when asked to, sweet disposition, no aggression, basically an angel. So what we've got in our house is a Jekyll and Hyde now---without Focalin, holy terror; with Focalin, a joy to have around.

Today, we were half unpacked from our quick trip to visit family for the 4th, and I couldn't find the XR capsules when I needed to give him one this morning. We usually do XR in the morning, and then follow up with a short-acting tablet around 3 or 4 pm if needed to get us through the evening. But we were in a hurry for church, and I'm dashing around looking for the flipping pill bottle......not a pretty picture. Eventually, I gave him one of the tablets instead, figuring that was better than nothing, and it was, for a while.

We'd planned a grocery store outing for the afternoon, and as the hour approached we saw the 2.5 mg wearing off. How could we tell? The maniacal laughter, the near-constant running, seeming inability to stop and/or listen, and the number of times I have to resort to "ONE.........TWO....." etc. I mixed up another 2.5 mg tablet into lemonade (our preferred method of consumption) and he drank it as we walked to the car and got loaded up. The store is only 1/2 mile away, and clearly the med did NOT kick in as quickly as I hoped it would. Can you say "shopping trip from hell?" Good job, boys and girls, I knew you could!

Standing up constantly in the stupid freaking "car" contraption that he insists on riding in, grabbing anything he can touch on the store shelves, nonstop chatter about wanting a cookie, wanting ice cream, etc. Eventually, getting out of said "car" but insisting on pushing the car instead.......pushing it WAY too fast, pushing it into the back of people's legs and feet, and just generally acting like a monster who apparently was never granted the gift of hearing. Or of parents, I guess, which is probably what the other shoppers thought.

So, in one of my finer parenting moments, I made an ass of myself in front of the store staff by jerking his hands off of the cart handle just milliseconds before it would have crashed into our bagboy's feet. I jerked him away from the handle, picked him up and carried him, baby style, out into the store lobby while K paid for the food. And we had a "word of prayer" in my (hopefully) softest yet scariest Mom voice about how he'd better NEVER do this again, when we say stop pushing the cart then he'd better stop, etc. Still, no med effectiveness yet, I could tell by the laughing, the thrashing to get out of my arms, etc. And boy, was I regretting that we hadn't put a bottle of wine or some Smirnoff Ice in the cart.......

But you know what? By the time I strapped him into the carseat to drive home, it was kicking in. He was very repentant, almost in tears, and I could see the "angel child" emerging again. At home, things were by no means perfect, but we've certainly been through worse. In the occasional moments of calm tonight, I started thinking though (back to where I started this rambling post).........Is this the way it will always be? People ask me "will he have to take these meds all of his life?" and I don't know what to say. If today is any indication, yes he will.

But what are we actually teaching him? He doesn't know (yet) that he even takes meds, because I didn't want him to use that as an excuse, or expect that the meds have to do the hard work but not him. Does that even make sense? Am I just deluded and/or stupid? It just feels like we're putting a band-aid (or 2) every day on a wound that never heals, never improves. And God forbid if we run out of band-aids, or miss a day........it's a nightmare. But we just keep on sticking the band-aids over the spot, hoping no one will notice and that people won't realize that my child has a festering open wound on his body and wonder why I'm not actually DOING something to make it better.

This has made no sense, and I'm sorry for that, but still appreciate you letting me say it. I'm just worrying, I guess, thinking that we're masking the problem but not improving it, solving it.......only, can it be solved at all? Does age, maturity help? Are there strategies we don't know about? I don't want my child to be 100% dependent on medication to even function in his life, in his world. Is that what he has to look forward to? Right now, my sanity and survival depends on those meds, I'll tell you that much. Will that ever change? Am I taking the easy and/or selfish way out?

Oooh, that smell

No, not the Lynyrd Skynyrd song, sorry.....

This post is about the amazing way that smells can instantly transport you to another time, another place. I've experienced that phenomenon many times before, but it never ceases to amaze me. Today was no exception.

In the children's hospital where my boys each spent their first weeks of life, the NICU is on the 8th (top) floor. The elevators are on one end of a long hallway, and the NICU entrance is on the other end. Pediatric intensive care (PICU) is on that far end of the hallway too.

As things tend to come full circle, I found myself back at the children's hospital today, only as a visitor this time. A former student of mine has her own daughter now, and that daughter is very ill and a patient in the PICU on the 8th floor. Through the miracle of Facebook, I've been reconnected with that student and have followed her updates about her daughter. I knew I wanted to do something for them, if I could, so I decided to make a care package of snacks, bottled water, etc for these parents as they spend hours, days, weeks in that hospital....a situation I know very well myself.

So I packed up the boys this morning, and we trekked downtown to deliver the package. After a successful parallel parking adventure, we went into the hospital and I guided the boys to the main elevators. The instant the doors opened and we stepped inside, I smelled it. Can't describe it, won't even try other than to guess that it's a mixture of disinfectant, hand soap, bed linens and fear. But when the smell hit my nose, I had a simultaneous feeling of pain, dread, sadness in my heart--literally a physical pain in my chest. It was strangely like the feeling I remember having when I began my second tour as a NICU mom--disbelief that I was there again, coming to grips with what I was facing, what I'd lost, what more I possibly could lose.

We rode up to the 8th floor, and when the doors opened on those familiar sights in the hallway, the smell was even more vivid. I'd know that smell anywhere, anytime. Come find me in 20 years, with that smell in a bottle, and I could tell you what it was. I tried not to focus on the surreal aspect of walking down that hall holding the hands of my 2 boys, and just stayed with the task at hand--delivering our package of muffins, pretzels and granola bars. That hall can seem so long, so scary to walk down, and I really never thought I'd walk it again. But here I was, remembering the lonely and fearful walks down that hall--45 days in 2001, 78 days in 2004.

I just keep coming back to the smell, though. Indescribable, but unmistakable. It's like I was right there again, rather than 5+ years removed from those days. When we reached the hall's end, and saw the entrances to the NICU and PICU, I looked toward the NICU side and thought about the babies that are in there today, and about their parents. How many babies are fighting for life today? How many parents are living off of vending machines and sleeping in the little family waiting room? Then, we turned to look at the PICU doors, and I remembered parents I'd met along the way who had older kids here......cancer, transplant patients, etc.

We didn't find who we were looking for, and ended up heading back downstairs to the information desk. They agreed to take the package up for us and get it where it belonged, so we left the bag with them and headed out. But all day, I've been remembering the smell and its amazing connection to memory and experience. We're unbelievably fortunate to have had one of the country's best children's hospitals to care for our preemie boys, but I think you'll understand if I say that I'd be perfectly happy NEVER to smell that smell again.

Thursday thirteen

Stealing an idea from my blogger buddy Tafka today.....here is the debut edition of my Thursday thirteen!

13 Things about Me

1. I'm going to be a college student again starting in August! It still doesn't seem real sometimes, but I bet it will when I see the first class syllabus and list of assignments!

2. I love living in Lowcountry SC. Not sure I'd want to live anywhere else! There's so much to do and see down here, and I love just looking at the natural beauty of marshes, rivers, etc.

3. When I was younger, I always figured I'd have girls one day. I was such a "girly girl" myself, the complete opposite of a tomboy, and yet here I am with 2 active boys! But I wouldn't change a thing about that!

4. I've never traveled outside the US. Not even Canada. Truth is, I feel pretty deprived in that department, and I'm not sure I'll ever be able to rectify it either. My ultimate vacation (outside the country) would be to England...specifically London. I know, it's rainy and dark, but the history there is just such a draw for a nerd like me. ;)

5. The West Wing is my absolute favorite TV show of all time. When it was still running, I would literally RUN out of Wednesday night choir practices to try and get home in time to see the opening credits.

6. I am love-love-loving Facebook. I can't think of a better way to reconnect with so many people from high school, college, former students I taught, etc. On any given day, I can chat with my college housemates, music fraternity sisters, high school band friends, people from my church, family, coworkers of past and present.......it's simply amazing.

7. I'm trying hard to improve my eating habits, and to lose weight along the way if I can. Really have only lost about 7 lbs so far, but I'm optimistic and hope to lose at least 5 more before......

8. We're taking the kids to DisneyWorld for the first time in about 3 weeks! I cannot WAIT to see their faces, their reactions to it all. We're staying in the AllStar Music Resort (gee, I wonder why, LOL) and will do all of the Disney parks, plus Universal Studios and the Wet-n-Wild water park. Oh, and a Tampa Bay Rays baseball game on our way back home.

9. I am both fascinated and overwhelmed at the same time by the broadness of the autism spectrum. And I really do accept that my son is on that spectrum, but sometimes I feel like maybe we don't belong in that "autism community", like we're TOO lucky or too fortunate in how well Mr. L is doing. It's like we're in no-man's land, not belonging completely to either group.

10. As strange as this sounds, coming from a musician and music teacher, I really don't always like to listen to music while in the car. Especially after a school day, I just want to hear talking........so I listen to talk radio, or one of the comedy channels on Sirius, etc.

11. I'm a political junkie from way back. The 2008 election cycle was the most fascinating, exciting and amazing thing I've ever experienced in my lifetime of watching that stuff. Of course, it is always more fun when your guy wins, right?

12. I still have bitterness, anger, resentment and frustration in my heart regarding my preeclampsia experiences and the premature births of my boys. There is so much about pregnancy I missed out on, and that might sound trivial but to anyone who's been through what I did, it's most definitely not. I hide it pretty well nowadays, but it's there...jealousy, even jealous of dear friends when they "beat PE" or just have plain old normal easy pregnancies like everyone should have but some of us don't.

13. I am incredibly blessed, far beyond what I deserve. My boys are alive, growing, thriving, smart, active, funny, talented, and far too many PE survivors sadly can't say the same things. So when I complain, or whine, or have temporary amnesia, maybe you can help remind me about #13.........

Damn preeclampsia!

That's what I feel like saying today. Saying it LOUDLY, screaming it from the rooftops for anyone who's listening to hear! Damn preeclampsia!!!!!

I need a scapegoat, that's my current problem. I need someone or something to blame, to be mad at, to hate for the things that have been done to my family. And the nearest and most logical scapegoat is preeclampsia.

Isn't it PEs fault that my babies were born far too early, too small and too sick? If not for PE, I might have enjoyed a normal, happy, healthy pregnancy. Might have gone through labor rather than having 2 c-sections. Might have brought my babies home with me in 2 days, rather than 2 or 3 months.

And it's not just about pregnancy and birth.....if not for PE, my children might very well be neurotypical today, normally and typically developing little boys with normal, typical lives. Seems weird to wish for typicality, to wish for ordinary-ness, but I do. Without preeclampsia, which then caused the prematurity, A might not be on the autism spectrum, and E might not have ADHD and severe aggression and impulsivity.

Maybe it's ridiculous to blame it all on the preeclampsia, but somehow it helps. Gives me something to lash out at, something to hate, something to focus the anger and the hurt on. And it does hurt, all the time. Maybe that's pathetic, considering my last bout with PE was nearly 5 years ago. But because its effects are so long-lasting in my kids' lives, and in MY life, it doesn't seem to matter how long ago it was. I HATE preeclampsia! May the researchers find a cure for it, soon, and a way to prevent other families from having to suffer pain and loss because of it.

I don't like those wires

In the last week or so, little E (the 4 year old, former micropreemie) has gotten really interested in looking at his baby photo album. The one that has the pics of him from birth until age 9 months or so. He wants to carry it around the house with him, and if I dare put it back on the shelf where it belongs, he gets it back down and asks for one of us to look at it with him.

It's amazing, isn't it, how the littlest of kids can sometimes say the biggest things? The things that just pierce your heart and throw you for a loop? Well, sometimes I think my boys are the champions at doing just that. When E first took out the photo album last week, and looked at those first few pictures of him in the first days of life, he asked me "what are all those wires, Mom?" Pang-in-the-heart #1. "Well, those were wires that connected you to machines that helped to take care of you after you were born." "You remember that you were a baby in the hospital?" (that's the phrase he and A use to describe preemies) "Yeah, I remember."

"Well, that means that you were sick when you were born, and needed the doctors and nurses to take care of you for a while." "What about that one?", motioning to the nasal cannula that gave him oxygen. "That helped you to breathe, it blew air into your nose so that you could breathe better."

Then he did it, the pang-in-the-heart to top them all: "I don't like those wires on me, Mom". Guess what, buddy? Neither do I. :( Oh how I wish that your newborn pictures, your first 3 months worth of pictures, didn't have "those wires" in them.

Every day since then, as he looks at those early pics, he'll say it again: "but I don't like those wires". Our saved pics on the computer come up now as the screen saver......it scrolls through a random assortment of pics until you tell it to stop, basically. Tonight, he said it again, while sitting in K's lap at the desk. "There's me when I was a baby, but I don't like those wires, Dad."

"I know, hon, I don't like them either."

:(

Trip down memory lane

Today was the every-other-year Neonatal ICU reunion at the hospital where the kids were born. I love going to these things, wouldn't miss it, truthfully. If you get past the realization of just how many kids go through the NICU (you can tell by looking at the hundreds and hundreds of families at this event)........it's a fun time for everyone and a great chance to see the doctors and nurses that you remember from those stressful days.

It takes a special kind of wonderful person to work in the NICU, no question. I think it would be incredibly easy to burnout, from the intensity of the job and the ups and downs (more downs than ups, sometimes?). But the 2 nurses we knew best were there, and it was great to see them and get pics taken. They both remembered us instantly, which was amazing considering that it's been 4 years since little E was discharged. Think about it: we've only got these 2 nurses to remember, but they've got countless families coming in and out each week......you could easily expect that it would be very hard to remember any of them, especially from years ago. But they did!

There were jump castles, a petting zoo (goats, pigs, baby ducks, rabbits), pony rides, food, face painting, balloons, etc. Everything that a kid could want! :) Got some great pics, here are a few of the better ones....

These are pics taken with our fav nurses:






These balloon creations didn't even survive the morning, but he loved them while they lasted:


Being there today reminds us, again, how lucky we were to have access to such a wonderful, nationally-recognized Children's Hospital to care for our boys. If you've gotta have preemies in SC, MUSC Children's Hospital is the place to go. We met families who were traveling from halfway across the state every day to visit their kids......thank goodness we lived in the same town. Thanks, Sarah and Carlene, and everyone at MUSC for all that you did for us, and continue to do every day for the miracle babies!

A flashback moment

Sometimes I also blog over on Preeclampsia Survivors, a blog started by my long-lost twin sister Jen B (also of Unique But Not Alone). That blog is linked to our PE Survivors website and forum, and I had an experience this morning that I felt compelled to write about....

"A Flashback Moment"

....so I put it there, because it seemed to fit. Check it out, see what you think.

to medicate, or not to medicate?

That is the question. We go to the pediatrician on Thursday for E's 4-year-old checkup appt. So, in the meantime, I'm running through every possible scenario in my mind, of how it'll be when we discuss the dreaded 4-letter acronym......ADHD.......and what to do about it.

We haven't seen the ped in quite a while, since my boys have the annoying habit of only getting sick on weekends, when the ped is obviously unavailable. We end up at urgent care, which works fine, but means the ped is WAY behind the times on what's up with E these days.

It seems pretty clear to anyone who spends time with E that there is a hyperactivity/impulse control/aggression issue. Is it officially ADHD? Guess that remains to be seen. For a while before A got diagnosed on the autism spectrum, I had my suspicions and my "mother's intuition" telling me that something wasn't right, and leading me toward autism once I began to research and read. Well, same thing here. The more I learn, the more I think ADHD. And it's depressing. I know I have blessed little to complain about, if ADHD is the worst thing that my formerly 1.5 lb baby has to deal with, but still it's not something you'd wish to have.

All along, even when it was just talking hypothetically, I've always said that modern medicines exist for a reason. They do help people, and have a benefit in many cases. So many people go into "crotchety old person" mode when discussing these kind of medicines.....you've heard it, stuff like: "well, in MY day we didn't have those newfangled drugs. We just had to discipline our kids and make them behave" etc etc etc. But I've always said that if it ever was necessary for a child of mine to take meds, and it would help them, we'd do it without question.

Well, can I take back the "without question" part? Because the closer it gets to the time in which meds might really be prescribed, the shakier I'm getting about the concept. Is it a cop-out? Isn't there more I could have done, or could be doing, before resorting to a chemical solution? Will he have to be on these meds forever? What are the potential side effects? Are the long-term effects even known yet?

Part of me just wants to go in to the doctor on Thursday, throw myself at her feet and say "DO SOMETHING, HELP ME!!!!!!!" Then I'll gather up my prescription for mind-altering drugs and be on my way, right? But the other part of me is worried, thinks that I might be pushing too heavily and too quickly for meds for only selfish reasons......because I'm tired, because I'm stressed, because I'm at my wits' end with him and am just giving up. In other words, don't expect me to work hard and bring about improvements in his behavior on my own, just let the chemicals do it.

And even if we do choose to try meds, which one? I dread the thought of having to go through (possibly) several different drugs before finding one that seems to work without turning my little bundle of joy into a zombie, etc. And going back in for follow-up blood tests to check levels, etc....oh joy, won't that be fun for a 4 year old?

I guess the only redeeming fact in all of this, if you can even call it that, is that preemies have been proven to have a higher incidence of ADHD. Therefore, maybe it is NOT all in my mind, maybe I'm NOT just a lazy mom, maybe there is a true, real, physical reason for his behavior and his struggles with control. We've dodged so many bullets with him in 4 years....IUGR, PDA, failure to thrive, being on a vent, inability to eat, etc etc etc. Today, other than these behavioral/aggression problems, he is a healthy, smart and thriving little boy. And I never hesitated to let NICU docs give him indomethacin for that PDA, right? So if his difficulties have a biological cause, they might respond to a biologically-based treatment......?

Well, I'm not really any closer to deciding what to do yet, but it helps to talk it through. I do know that if we end up choosing meds for him, I'm NOT going to be broadcasting it in our social circles, etc. There's still a certain stigma attached, at least around here anyway. Guess that's another post for another day.

My baby boy is turning 4!

Sniff, sniff........my "baby", my last-born, is turning 4 tomorrow. 4 sounds so much older and bigger than 3 does, don't you think? It's like he's officially not a baby or even a toddler any more.......but a "big boy" as he'll readily tell you if you ask. He took brownies to school today for his preschool class, and then we'll have a celebration tomorrow with just our family (and presents sent from relatives out of town). Then, on Sunday we're having a party with preschool classmates and a little girl who lives next door that he wanted to invite. What a weekend!

The party theme is Go Diego Go, and we're having it outside at the pavilion area behind our church. PLEASE Lord, let the rain stop in plenty of time for things to dry up so we can play outside, do a treasure hunt on the nature trail, gorge ourselves on candy from the Diego pinata, etc. :) Only 4 kids have RSVPd to come so far, but these families are notorious for not RSVPing, but then showing up anyway. Hard to know how to plan, but oh well...........

The first half of 2004 was pretty much the scariest 5 months of my life. Beginning in January, I was put onto bedrest at home due to the onset (AGAIN!) of severe preeclampsia. There's no cure for it (other than delivery), or even a treatment that's guaranteed to hold off the progression of the disease, but some believe that strict bedrest can help. In my case, it seems to have done so. In February, an appointment with a maternal/fetal medicine specialist ended in immediate admission to the hospital, and the next couple of days were filled with intense fear and grief. I was only at 24 weeks, and we were being told by just about every medical person in the hospital that my baby boy (for whom we still hadn't settled on a name) would not survive if delivered anytime soon.

We hung on somehow, though, and I stayed horizontal in the hospital from Feb. 12 to March 8......when little Ethan Hunter was delivered by c section, weighing only 1 lb., 9 oz. Then we began our second journey through the NICU, this time for 11 weeks. There were plenty of scary moments, and many many long days and nights living in a hotel near the hospital and trying to maintain some kind of a life for our then-2 1/2 year old.

So when days like tomorrow come around, it makes me think back, obviously. I know that as time passes, memories fade, especially about how much something hurts.......either physically or emotionally. I think that's what's happening to me. After 4 years, I've repressed or blocked out a lot of the extremes of our fears of losing Ethan, but I still get shivers up my spine when I do think back to how close we came to NOT bringing our baby home with us, and how much of a miracle he truly is. Happy Birthday, little man, Mom and Dad and Andrew love you SO much!

Where do we fit in?

You hear so much in the news nowadays about autism. Celebrities are speaking out, charities being formed and raising money, books being written.........the awareness of "autism" is much more prevalent than even just a few years ago. But along with that, comes a much higher incidence rate of autism itself, and of the so-called "autism spectrum disorders" (ASD). Recently, the "1 in 150" statistic has been highly publicized, and it occurs even MORE frequently in boys, for some reason.

But even with the deluge of publicity on the topic, it's taken me quite a while to accept the fact that my son is on the spectrum. But he is. Or is he? Just about every day, I struggle with this. First, his tentative diagnosis was PDD-NOS, which is like a pile of leftovers for the kids who don't officially meet the criteria for "classic autism" or other recognized ASD. As I understood it, PDD-NOS is for those kids who have some developmental issues and autistic symptoms or "tendencies", and there's no real label to put on them, so they get "pervasive developmental disorder-not otherwise specified". How's that for a mouthful?

But, Andrew was a preemie too, a 29-weeker. And most preemies have developmental delays, specifically in the areas of motor skills and/or speech. And true to form, Andrew was delayed, both in learning to walk and in the development of his language. He said a word or two, then stopped, and said no more for a while. He didn't acquire baby's favorite word, "no", until he was 2 1/2.

So when we started the diagnosis process, evaluators said "he sure looks a lot like Asperger's Syndrome" but the strict definition of Asperger's says that a child must NOT have had a speech delay. And as time has progressed, I've thought back to those comments and come to the almost-conclusion that Asperger's is a more accurate description of Andrew. But in some ways, even Asperger's doesn't quite fit.

Andrew is smart, very smart. Academically, he does very well at school and reads above grade level. He's made such tremendous progress over the last 2-3 years, and the progress even extends into the social realm, where ASD kids typically have the most trouble. He can play with other kids, speaks to them, looks at them, enjoys their company. He's even started to say some typical-6-year-old things, like "this is boring" or "I'm tired of this", and occasionally has a bit of an "attitude", all of which are typical of non-ASD kids his age, right?

I have wonderful cyber-friends in the ASD world, and I owe so much to those ladies for their support and encouragement. But since every child with ASD is so different, I still sometimes feel like we don't really belong anywhere. I want and need to have a community of people to belong to, and to understand what we deal with and what my parenting situation is like.......I'm just not sure how to find it. I never want to make any other parent feel bad, if her child might be struggling more than mine or has more disabilities, etc. But it's just hard, feeling like we are neither off nor on the spectrum.............and since you can't pick and choose the characteristics that apply, we're left floating out there, knowing that Andrew still has difficulties to work on, but not always knowing how to go about it. There's definitely no road map.

My Mother's Day azalea is blooming

Hi! Welcome to my brand-new blog. I figured it was time to enter the new century, right? I hope that this blog will be a good way to share my thoughts, ramblings and the ups-and-downs of daily life. Thanks for coming along for the ride!

I'm a thirty-something Mom of 2 boys, and both were born very prematurely because I suffered from severe preeclampsia in both pregnancies. My oldest son, Andrew, has a diagnosis of Asperger's Syndrome (on the autism spectrum) and my youngest, Ethan, is barreling towards a diagnosis of ADHD.....emphasis on the "H" part.

Almost 3 years ago, my husband gave me an unconventional Mother's Day present: an azalea plant. We live in South Carolina, specifically right outside of a town called Summerville--basically, the world capital of azaleas. I'm well known for my black thumb, which kills every plant I come in contact with. But I figured I'd try to keep this little azalea alive for as long as I could.

I kept it in the original flowerpot for a while, then it started wilting. I planted it at the left-front corner of our house, and made a little decorative brick border around it, then waited. It struggled mightily for a while, but it seemed that whatever I did was wrong. I watered it too much; I didn't water enough. It turned brown, leaves fell off and branches became crunchy and brittle. I kept pruning off the dead parts, hoping something would make it through.

Around this same time, you could say my life was mirroring that of the poor little azalea plant. I was just being confronted with Andrew's diagnosis, and micropreemie Ethan wasn't eating, wasn't gaining weight, etc. I felt like I was carrying the world on my shoulders, and was failing at it. I went into a very dark period of depression, and my life nearly fell apart. I was just sure I couldn't "do this".....being a mom of special-needs kids and dealing with the loss of the kind of pregnancies and parenting I'd expected to have.

Thanks to a wonderful doctor who took me seriously, and to the wonderful cyber-friendships I've made, I've bounced back and made tremendous progress since that time. Things aren't perfect, guess they never will be. But, I pruned off some "dead parts" and kept pushing on, and that's really all that any of us can do, isn't it?

Last year, when spring arrived, I couldn't even see the remnants of the azalea plant. The flower bed had filled in with weeds, and they were crowding out the little azalea shoots........but some heavy weeding cleared things out for the last little surviving buds of hot-pink azalea flowers. I think we actually got one good blossom out of it last year.

Now it's 2008. Andrew's doing superbly in first grade, winning awards and growing taller by the day. Ethan's slowly making progress, thanks to omega-3 supplements, and his weight is finally on the charts! And my Mother's Day azalea? Even during the coldest parts of winter, I saw it growing.......steadily, slowly, pushing on and putting out new leaves. And now it's blooming! The plant still has a long way to go, and there may still be brown leaves and wilted blossoms in its future, but for now.............my tiny flower bed is filling with hot-pink blooms, and I like to think that the revival of that plant represents something similar for me.