Wednesday, June 16, 2010



Small words, no more than 6 letters spread over 2 syllables. But the concept is huge. As I've mentioned, my mother- by that I mean the woman who gave birth to me- left when I was 2. I had a mother figure in my paternal grandmother. My dad and I lived with her and my step-grandfather for a couple of years after the divorce. Later, I had a stepmother for a few years. Even though I did call her mom for a while, I never really had one.

Sometimes family members would slip and refer to my grandmother as my mom. I always corrected them that she was my grandmother. Frankly, being confused with the woman who gave birth to me is an insult, but even separate from that, it simply wasn't to be. I didn't have a mother and no amount of pretending would change that.

The word has more power in my life that I even recognized for a long time. I'm a member of a number of a number of message boards, many of which are parenting based. That means a lot of user names in the vein of "MommyToTwelve" or "BufordsMom". I never, ever shorten those names to "mom." They might get to referred to as "Buford's" or "Twelve" but never do I use the word mom except when I actually mean mother. I would be a better Christian if I only used the Lord's name in vain as often as I do the name "mom."

When we began our quest to have a baby, I daydreamed about the day that our child would call me momma. I thought about being greeted with a cheerful "MOMMA!" and even about the the plaintiff wail of "maaaaaaaaaammaaa" after a skinned knee or bumped head. There was a night in the PICU where I could hear a child crying for his mom. My heart broke that, while his mother was there, she couldn't fix whatever had landed him in the PICU. But still, I thought about the day that Robbie would call me mommy.

When he started babbling, one of the first consonants he said was m. I knew it didn't mean anything, but hearing it still filled me with joy. And then he learned how to make the d sound. Since then, everything has a d. Kitty is "Diddy." Thank you is "Dah ooh." Recently he started really saying dada. Then he started greeting David "hi dadda!" It's as sweet as it could ever be, but I also was a little jealous.

David's been great about it, of course. He encourages him to say mama repeatedly. He asks Robbie where mommy is and Robbie dutifully toddles over and pats my leg proudly. Robbie escorted me to the chiropractor earlier this week and the doctor asked Robbie where I was and Robbie came over and poked me in the neck. He knows I'm his mommy, he just can't say it yet.

It strikes me as a little funny now. I avoid the word like the plague for most of my life, focusing so much on the meaning. And here is Robbie, clearly understanding the meaning, but still we don't have the word. It's a little Karmic, I must say.

Over the weekend, I was pretty sure he was starting to call me dadda, too. Then I decided it was just babble. I was just looking for more meaning in random sounds. I shook it off and reminded myself that he'd say it when he was ready.

The last two nights, Robbie's been in bed before I got home from work (This shift sucks.) Last night when I got home, though, I could hear him babbling softly to himself, still awake like the naughty imp that he is. I snuck in and gave him a kiss, retucked him and wished him sweet dreams. Tonight, however, when I got home, he was very quiet. David said he thought Robbie was asleep, so I crept stealthily towards his room and gently pushed the door open. Immediately I saw a little arm moving far too animatedly for a sleeping boy.

I said aloud "Nope. He's up." and flipped on the dim lamp in his room.

The moment Robbie heard my voice, he sat straight up and beamed. He clamored to stand and reach for me. With his voice full of cheer & surprise, he shouted "HI DADDA!"

What could I do but laugh? Maybe mommy isn't such a great word after all.

--Trish (Dadda #2.)

Thursday, June 10, 2010


I'm just kind of in one of those points in life where you find yourself thinking "what next..." but not wanting to ask because you really don't want to know. In the grand scheme of things, there is nothing terrible going on. I'm very blessed and I know that.

That being said, Robbie's aging out of his daycare in September. Trying to find a new one that 1) I trust 2) I can afford 3) can handle all of his feeding & therapy issues.. well.. that's a challenge.

I just found out that my hours at work are changing. (They're actually changing the hours of our office.) so I"m now going to be working 1:30-10 instead of 9:30-6. That's quite a change and obviously affects home life quite a lot.

Because of the work changes, I'm actively looking for a new job. Not being able to put Robbie to bed at night makes me cry. A lot. Not seeing my husband... like... EVER? Yeah. That's not good for any of us. Of course, this is the crappiest time in history to look for a new job particularly considering I don't really have enough education to move around easily even in a good job market. (I'm kicking my own ass there, yes. I got 3 associates degrees but never a bachelor's.)

This has delayed our plans to try for another baby. Yes, we've decided to look infertility & preeclampsia in the eye and stomp on their feet. Which was supposed to be starting basically NOW. Not that we've prevented at all since Robbie was born, but you know..with pills & dildo-cams & stick-peeing. Maybe not with temping because frankly, I catch my ovulation every month without having to set a 2nd alarm. But actual trying with actual chances at success.

 The reason my hours at work are changing is because we're picking up a bunch of new work. That's all happening while our most-used software system is also transitioning. This is all good in the long run. Progress is good and obviously more work means more job security. But it also means constant training (which, frankly, is lackluster at best.) and spending a good deal of my work day being confused & frustrated.

The bosses are treating the new schedule as though it's a state secret. I think it's just a fun game they like to play. Never mind that we employees could really use more than 1 day to arrange our home-lives. But they will not be reasoned with. (By contract, they must give us our schedules by Thursday at 3pm of the preceding week. I'm told it will be out at 3:00 on Thursday and absolutely no sooner.) This does not improve the morale in the office much. I was lucky to obtain some info on the down-low to know my new hours a day or two earlier.

Basically I spent the largest part of my waking hours being stressed out. I've always coped with that stress by looking forward to the smile on Robbie's face when I get home. He'll still be here, but he'll be sound asleep by then. I'm sadder about that than I can begin to express. But our financial situation doesn't allow me to just up and quit.

Truth be told, I'm not terribly hopeful about finding something that pays even close to my current salary that I'm qualified for. I'm not giving up, but I'm also trying to plan around this new, crappy schedule indefinitely.

I'm trying to focus on the positives. They do exist. I'll get more waking hours with Robbie than I do now. They'll just all be front-loaded. It will be easier to get to appointments. I won't have to take any PTO to go to the doctor or any place with daytime hours. I'll be able to attend a good portion of Robbie's therapy sessions. We will be able to do fun things during the day. Even if Robbie is sick and we need to be home with him, I can probably only burn 1/2 day of vacation because David should be home from work to stay with him before I would need to leave to put in the 2nd half of my hours. There are positives, to be sure.

I know I'm very lucky to have a job at all, let along one that pays well & had good benefits. So I'm trying very hard not to think about missing bedtime 5 nights a week. Or about missing my husband. Or about no family dinners. But it's hard.

I've spent an embarrassing amount of time daydreaming about winning the lottery. My office plays twice a week. The chance does exist. Next to impossible, but hey, I still get my hopes up for a positive pregnancy test each week. I'm nothing if not an optimist. Right?


Wednesday, June 2, 2010

Move forward or fall down

I'm sorry I've been so quiet.

I think blog silence is a vicious cycle. I get busy or overwhelmed and don't post for a few days, then I don't know which thing(s) to post about so I post nothing. Then there's so much that I need to discuss that I'm overwhelmed and tend to shut down the window and say "maybe tomorrow..."

So I'm going to try to catch up.


I have received many of your sweet emails asking about Robbie and they've meant a lot to me. They're all still in my inbox waiting for me to know how to answer them.

But I still don't.

How is the tube wean? I don't know. Better, I think. But not great. Since I don't really have any professional guidance for this and Robbie has never been typical even to be a typically atypical kid, so I don't really know how to measure what's good, better, or best.

When we started the wean the last weekend in April, he was consuming an average of about 160 calories by mouth each day. Usually 6-8 oz of purees, and maybe a cracker or two. No more than 4oz at any sitting.

These days, he consumes an average of closer to 300 calories per day. Often more. Usually 12-14 ounces of purees, regularly eating 6 oz at one sitting once a day. He also has been eating very small bites of actual table food. He likes hot dogs. He's probably never eaten more than 1/8 of one on any given night, but he picks them up, he sucks & chews on them. He's moving his jaw like he really means to eat it. He nibbles on french fries and chicken nuggets. He will nibble on most bread. He now can eat more like 5 crackers in a day.

In the scheme of things, I think that's great progress. Is it the 1000 calories/day he needs? Obviously not. But he's doubled his caloric intake and more importantly, he's gaining skills. I can SEE a difference. We still get a lot of food thrown in the floor or simply rejected. But sometimes he takes something new and pops it in his mouth and seems to like it. Words can describe how that feels.

He still eats purees better at daycare than at home. At home, I have to turn Handy Manny on about 99% of the time to get him to let me feed him. Not the best habit in the world, but whatever works. But he drinks better at home than daycare.

If I can distract him or catch him in just the right mood, he'll let me give him sips from his sippy cup. He hasn't taken more than an ounce of liquid total at any time, but again- progress. He's gotten hot and sweaty while playing outside a few times and shown interest in drinking. If he's thirsty enough, he'll even hand me the cup and ask for me to give him a drink. We've explored more flavors (different fruit & vegetable juices) but so far nothing seems to irritate him less than water, so I've mostly been just going with water. Anything that helps him trust a little more.

We still do not tube him at all during the day. I did have a weak moment about 2 weeks in. He'd had about 40 calories all day and was cranky as all get out, but wouldn't be fed. He was clearly hungry, but he still doesn't seem to understand food as the solution. He still doesn't really enjoy being fed so much as he is sometimes willing to submit to my desires to feed him. But this day he wouldn't even do that. I finally gave up and tubed him about 4 oz of purees. It did improve his temperament immensely, but I spent the next 3 days feelings guilty. As though wanting my son to thrive makes me weak. Logically, it was the right thing to do, but it felt like quitting.

Fortunately, since then, we have not used the tube during the day at all. He gets 20 oz of whole milk mixed with 2 packets of Carnation Instant Breakfast at a rate of 75ml/hour overnight. Yes, for the first time since we found a formula he could digest, he's not getting any. Our grocery bill just lowered by about 25 dollars per week.

He seems to do fine with that. He still wets all day (I'm sure the purees are what is helping with that) and seems to feel okay. He's vomiting has almost disappeared. We're down to maybe 1 or 2 pukes per week. And to be honest, I lowered his reflux meds a little (down to an adult dose- still huge for a kid of his size) thinking maybe we could wean him off, but that doesn't seem to be working out. I added that 2nd dose back this morning. It's not so much the vomiting, but I have been seeing more and more refluxy burps and signs of discomfort. If he's not ready, so be it.

The biggest news is that he's regained all the weight he lost. He was down 1.5 pounds at one point. That was very hard for me to take. I could see every rib. His pelvic bones were sharp through his skin. I've seen my kid starving before. I really do not wish to ever see it again. But since we've found a good balance with the milk & powder at night, he's regained that weight. And he may have even gained a little more. It's hard to say for sure since I usually weigh him at night and by then he's leaning towards slight dehydration. Those ounces of fluid can make a big difference in his weight. But he was 23 pounds 12 ounces at his last weigh in. Still bringing up the bottom of the growth chart, but he looks good and I'm going more by that than the number.

So overall, I feel like we're progressing. But of course, from the outside looking in- he still gets 60% of his nutrition through a hole in his belly. He still doesn't drink even small amounts reliably. He's not a typical kid. Less than an hour ago, my boss gave me the "oh, my doctor said if he's hungry, he'll eat" while comparing her 11 year old son to mine. Yet again, I explained that isn't true for every child. It isn't true for my child.

Today, I'm okay with that. I see the progress being made and feel confident that we'll get there someday. But some days I feel hopeless. When we have a day when he just won't eat anything at all? I'm terrified & desperate. I was warned that this process is harder on the parent than the child. I absolutely believe that. Robbie seems happier than ever. He's puking less and he has more control over what he does or doesn't eat. he's still being nourished so his energy levels are still decent.

As his parents, though, we still feel like every meal is like turning cartwheels on a tightrope. You never know which was is up, the line is very thin, and the fall is very steep. All we know is we don't dare stop. Our only choices are to move forward or fall down.


In other news, Robbie turned 2 on Monday. We did have a party and there are pictures. But that will be a post for another day. As are updates on his latest skills & habits. You can always catch glimpses at him on his blog.