Robbie is headed full speed towards the terrible twos, no question. He has been willful, cranky, even mean the last few weeks. Today seemed exceptionally bad.
He woke up crabby. He balked at getting dressed until I finally got frustrated enough to pass him to David, announcing sharply, "Your turn." I flounced off. Five hours of sleep simply wasn't enough to wrestle alligators first thing in the morning.
He had a 10:15 appointment to get his Synagis shots this morning. Normally they're given at a clinic close to home but that was last week when he had 102 fever. This make up clinic was on the other side of the city. He grumped and whined most of the way there. The appointment went about as well as expected. Two shots- one in each leg- and he was hysterical. This I can handle. We do this every month, all winter long. Some hugs, a pacifier, wipe his tears, sing him a song, all better.
Then we headed to bunch with a friend and her son. I was really looking forward to it, partly because I took a diet break and was salivating at the notion of some carbs, partly because I really like this friend and looked forward to her company, and partly because we really aren't venturing out into public a lot this winter and I've been a little cabin-feverish.
But the restaurant was a complete nightmare. There was a short wait for a table during which time we waited outside. Robbie thought running into the traffic lane was a great idea. When I tried to redirect him to something slightly less lethal, he had a temper tantrum. I shot the other waiting patrons an apologetic look and was met with disapproving glares. No sympathy here.
We were seated shortly thereafter and enjoyed approximately 2 minutes of quiet. Then started the whining. Not just whining, but really, shrieking. That's his latest trick, you see- the shrieking. When anything doesn't go quite his way, whether he's been told no or just can't reach something he wants, he shrieks. It's painful. In brighter news, he may have a future as a glass etcher.
At one point, my friend's little boy (who is just a few weeks younger than Robbie) had the audacity to take one of his crayons. It was ugly. Robbie balled his fists tightly, clenched his face into a scowl and trembled with anger. And of course, more shrieking. Busboys came by and tried to make him smile. He was unimpressed. Waitresses expressed sympathy at the sad little boy. I did my best to soothe him, alternating him between my lap and his chair a number of times, each eliciting only brief minutes of peace. I considered abandoning my meal uneaten, my companion unattended, and just giving up. I glanced around seeking something, someone, someplace that would soothe him, but there was nothing.
My friend's son seemed confused. Why was this boy so upset? At one point he decided to try out a few shrieks himself. I apologized to my friend. Robbie had infected him. I idly wondered if I had enough money in my account to pay for the meals of every one around us. I was suddenly grateful my friend had chosen the noisier, busier restaurant over the quiet bakery I had considered.
As the meal continued he did finally settle down a little bit, becoming more sad and tired than enraged. I abandoned the plan I'd had to have his hair cut today and prayed he'd sleep on the way home. My prayers were answered.
At home, he napped only a brief time longer. Though I was chagrined that he'd slept less than an hour, he woke in a decent enough mood. The respite was brief. Soon the willful monster reared his head and we endured more shrieking, more shoving, more defiance. At least this time it only pierced our eardrums and not the ears of unsuspecting restaurant patrons.
There were better moments, of course. Between the shrieks, there were smiles, giggles, hugs. But it was still one of those nights where I was counting the minutes until bedtime.
David had a work event, so I was on my own. I used that as an excuse to start bedtime a little early. It'll take longer to do it by myself. I should allow myself an extra half hour. In the end, Robbie went down about 15 minutes earlier than usual. I think he was asleep before I left the room.
I collapsed in a heap of exhaustion and listened to his music playing through the monitor. A few minutes later I needed to return something to his room. I paused at his crib, smiling at the sight of him.
He was sound asleep, his breathing heavy and peaceful. He was in the same position I'd left him when I kissed him goodnight, but now his pacifier was hanging half out of his mouth. The eyes which had only hours before been filled with mischief and fury were now soft and peaceful; his hands which had shoved me aside when I dared get in his way now lay softly as his side. The unruly hair I'd wanted to cut today lay across his forehead and brushed his eyelashes.
I stroked his head, brushing his hair back, still amazed how soft both his skin and his hair is. He stirred a little. His squeak wasn't so much happy as it was content. He nestled into his pillow a little tighter. His breathing deepened again.
I stood and watched him a long moment. I shook my head in wonderment. This child of such beauty and life, could he truly be mine? Could something so perfect be part of me?
I thought of my life even 2 years ago, wondering if I'd ever even have need of a crib; if I'd ever see a child fill it. Here I am, doing just that. Watching this crazy, wild, willful, strong, beautiful child sleeping off a day of wonderment, new experiences, learning, trying and failing, trying and winning, of love.
I know how he feels. I am exhausted from the experiences, the wonderment, the winning and failing....the love. It is good. I am fulfilled.
I should have given up on the show a long time ago.
The show is science fiction. That was established the day they did an IVF with TESE & ICSI in one day. Never mind that it was all done in the office with each patient next to each other, wide awake (what man and woman wouldn't want to be completely lucid with their gonads were sliced open and jabbed with needles) and immediately upon implanting (yes, implanting, not transferring, they told us so!) it was declared a success. Yes. Science fiction.
But tonight, not only did they get pretty much every medical detail wrong (bili lights don't warm babies, a 25 weeker wouldn't be fed the same day, would automatically be intubated, therefor would not be heard crying, the list goes on..) but they sunk into a new black hearted low. The condescension towards parents who do want to save their children was appalling and insulting.
I know far too many parents who have had to face the worst news one can hear; that their child won't make it. I pray that they were given the news more kindly than the piss-poor acting job allowed for on tonight's show.
Those of us who had a choice to save our child really didn't need the attitude that temporary feeding and breathing tubes were torturing our children. And I know I certainly found the attitude that any one who would try to do such a thing is deluded and cruel offensive.
Unfortunately there are people out there who watch the show and think it's at least somewhat reflective of real life. I fear that it will lead to yet more criticism of those who are faced with the toughest choices simply because they saw an episode of TV and think they know something. Truth be told, I don't even think the show has a medical advisor. Not just because of this or the IVF episode, but dozens of others. It's astounding to me.
Yes, I realize sitting in my living room red-faced, muttering obscenities about a fictional TV show is just as absurd as those who think it is real. But having seen and heard first hand the notions people have about preemies, I know how pervasive it is.
So I'm thinking I need to give it up. I say every week that I am. But this week was actually insulting. I think it's time.
To the producers and writers of Private Practice:
You suck. More than usual, even. You're now officially one fan short.
Oh and P.S. Fuck you.
--Trish mom of a 26 week preemie whose smiling face tells me every day that the fight was worth it
Since the night nurse said Robbie was contagious as long as he had the rash, I stayed home with him today. I was always under the impression that Roseola was only contagious as long as he had a fever, so I called the pediatrician today to clarify.
When she called back, I told her what had happened (3 days of high fever, then a day of completely fine, then a rash) and that I was 99% sure he had Roseola. She interrupted to agree- "Oh, I guarantee it's Roseola. That's a classic presentation." Then I asked about the contagious period and she confirmed I was correct. He was only contagious as long as he had a fever. So he'd been fine as of Sunday night.
That was a bit of a relief on a few levels. First, I could go back to work (I only have so much PTO!) and second, I'd sent Robbie to daycare on Tuesday. As luck would have it, he was actually the only kid at daycare on Tuesday, so he wouldn't have exposed any of them anyway, but I did worry that he'd spread it anyway. I know Roseola is fairly minor, but I'm not one to purposely spread germs.
So Robbie and I spent the day together. He actually slept very late this morning, allowing me to catch up on some sleep and was pretty much back to his usual self today. Instead of laying around on me doing nothing except watching cartoons, he actually played with his toys and we wrestled and had a good time. It was nice to see him up and around.
The rash also seems to have cleared as well. Dr. P did say it usually only lasts a day or two. As usual, she was right. As of bedtime tonight, I didn't see anything left.
So I think we've survived another illness. And this one didn't even require breathing treatments. Go Rob!
A serious case of bedhead
Beep Beep, coming through!
Determined to reach a kitty
Enjoying a chocolate graham cracker (the only food we have found that he really loves)
I'm such a big boy that Mommy let me have my own pillow. G'night!
Well, we officially have a reason for last weekend's fever.
I got home from work tonight and as I was indulging in an evening snuggle, I realize Robbie had a rash all over his tummy. Upon further inspection, it's up his chest, all over his back, even a very small patch up his neck onto his face. I knew almost immediately what it was.
After some quick googling, I felt pretty confident that it was Roseola. I put in a call to the doctor's exchange just to make sure there was nothing else we needed to do. The nurse called back and agreed it was very likely Roseola and that no, there was no treatment at all. We just have to keep him home until he's no longer contagious, usually 1-3 days until the rash is gone.
Roseola is pretty benign in the grand scheme of illnesses. Usually 3-7 days of a highish fever (usually 103) followed by 1-3 days of rash. It is sometimes accompanied by a sore throat and usually some lethargy. Robbie's pretty much textbook. His fever was 102 all weekend, but that was with Motrin and Tylenol. He's definitely been tired. The poor boy took a nearly 4 hour nap at daycare today. I'm pretty sure that's a record.
Since it doesn't usually trouble adults, we're probably all fine. And really, Robbie seems fine, too. He was happy and playing tonight, even annoyed with me for trying to interrupt his precious playtime to try to get a few pictures. But I managed anyway!
No time to look at the camera, Mom. I have a very important toy to chew.
Another day of fever fighting. He slept a ton today, which I'm hoping will lead to better virus fighting. He definitely did a lot of cuddling. If he wasn't being held, he wanted to be laying next to one of us. He's definitely spent a lot of time in Mommy & Daddy's bed this weekend.
He did seem a little improved today. He actually ate a couple ounces of cereal this afternoon. Since it's his throat that is the problem, I'm assuming that means it's feeling a little better and hopefully the fever will be gone soon. It was 102 again this morning, but he has been a bit cooler this evening. We'll see what the night brings.
Fortunately David is off for President's Day tomorrow, so he'll be able to stay at home with Robbie. We're praying tomorrow is the end of this round of illness. It certainly is a stubborn one.
Still sick today. The night was not great and he woke up boiling again, so off to the doctor we went. The verdict is a viral throat infection. Nothing we can do except treat his symptoms. So we spent another day rotating Tylenol & Motrin and keeping him hydrated and basically holding him. This evening he seemed to cool down and perk up a bit. Hoping tomorrow brings better things.
It was a sick day in our house today. Robbie woke up with a temp and sour stomach. Even with Tylenol & Motrin it got as high as 101.2 under the arm.
Fortunately with some babying of his stomach, he managed not to puke much today (minus some of the Tylenol this morning) and we mostly just spent all day in bed. He was SUPER snuggly. As much as I hate to see him sick, it is awfully nice to get to hold him as much as I want. Now that he's walking full time, he usually has better things to do than lay with his momma.
Late this morning, he crawled into my lap and we watched some cartoons together. Once I heard snoring, I realized he'd fallen asleep. After getting my fill of snuggles (hey, he hasn't slept on me in months!) I put him down next to me in our bed.
Isn't he sweet?
Fortunately late this evening his fever seemed to break (still warm, but not boiling) and his mood seemed to improve. I'm hoping by morning, he's back to himself.
The pictures above are courtesy of my new attempt at a picture a day. One of the latest trends in blogland is a picture a day. I can't swear I'll be 100% on it. But I'll try!
I have no cohesive thoughts to share, so random thoughts it is.
My PMS has been out of control lately. I've never really had horrible PMS. A few times a year I'd find myself more irritable than usual and realize my period was due, but nothing major. Since I've had Robbie, however, that is NOT the case. My periods & cramps are very light (which is lovely) but my PMS is horrible. I'm not even going to recount what happened the other day, but let me just say to the lady in Sam's parking lot: Uhh.. sorry 'bout that. I feel positively homicidal towards my husband and impatient with Robbie. It's awful.
I don't particularly want to go back on the pill or anything, so I'm not sure what my options are. But I really think I'm going to have to talk my OB about it because this can't continue.
I'm trying to diet. I hate dieting. I hate being fat. I don't want to be skinny. I just want to be less fat. I lost nearly 60 pounds in the 3 months that Robbie was in the NICU. They've all found their way back. All of them. Tenacious fuckers.
I was on a pretty good roll for 6 or 8 weeks and didn't lose a pound. Then I got fed up and gorged for a few weeks and of course, gained 5 more pounds. Great. That was productive. So I'm currently doing 2 weeks of At.kins. God, I really want some carbs.
It's been an exhausting few weeks. Robbie's eating has been up and down. He had another cold which lead to another ear infection and wheezing. He got over both fairly quickly which was good, but I am so tired of it. One of our NICU friends is in the hospital very, very sick with RSV. This does not ease the panic I feel every time Robbie starts sniffling.
Please pray for our friends. I hate to see them going through this.
Robbie's behavior is very, very clearly indicative of the impending terrible twos. I recognize that the desire for independence is a great developmental milestone, but good golly it's exasperating. I swear when he learned to walk he realized he could do all sorts of things he didn't know he could do before and wants to do them all. Add to that the fact that he's REALLY a daddy's boy and he spends a lot of time pushing me away, running away from me or swatting my hands away. I wish I could say it doesn't sometimes hurt my feelings, but it does.
On that note, Robbie is asleep, I can't have any carbs, so I think I'll go lay in bed and chill.
One of the most annoying parts of parenthood has nothing to do with children. It has everything to do with what seems like everyone else. It's the suggestions. Whether it's your sister who thinks you should cloth diaper or your mother who doesn't understand why you want to breastfeed, your grandmother who suggests cereal in the bottle to make your baby sleep better or some nosy stranger who accosts you about "poisoning" your child with formula, every one has an opinion. It doesn't matter how well-researched you are, how many children you've had before, or what special considerations your child might have, every one seems to think they know the right way to raise your child.
I've experienced it in hundreds of normal and not-so-normal ways. Sure, I got the judgy comments about my insistence on feeding Robbie breast milk and have endured probably dozens of helpful suggestions about getting Robbie to eat, sleep, talk, walk and whatever else it is that people think they're experts on. And I'm certainly guilty of it myself. When I see an 18 month old child sent to daycare with a sippy cup full of ice tea every day, I judge. I'm not quite so ballsy as to say something to her parents, but I do make a mental note of disapproval.
For us, it started immediately. When Robbie was born, no one asked us anything, really. They whisked him away to the NICU after letting me kiss him on the head for approximately 3/64 of a second. That was as it should be. They clearly knew more about what he needed in that moment than I did. I didn't know an ET tube from a bicycle pump, let alone understand oxygen saturations, apnea spells, brain bleeding, ROP, cold stress or any of the other hosts of concerns we had about Robbie at birth and shortly thereafter.
When they wheeled me down to the NICU to see him- hospital bed and all- I felt so overwhelmed and powerless that it really defies explanation. Nothing can ever prepare a person for seeing their child so small and fragile that you can literally see through their skin. There is no photo that could capture the intensity of his frailty.
I wanted to take care of him, of course. But I was literally scared to touch him. The first time a nurse invited me to touch his hand, I shook my head vehemently, then burst into tears and cried out, "I'm so scared to hurt him!" He looked as though even his mother's most gentle touch would tear through his paper thin skin.
Thus began a long journey of listening to other people's advice. The nurse was kind, but firm. "Don't be afraid. You won't hurt him. He needs to know you're here. Just touch your finger to his hand." My stomach churned with nerves, afraid that I wasn't a help to him as a mother should be, but instead a threat to his very survival. My body had already betrayed him once, what else would I do to hurt him? But I touched him anyway and she was right. He needed to know I was there. And I needed to feel that he was stronger than he seemed.
In the following weeks, the nurses would teach me how to change a diaper around tubes & wires, how to take a temperature, when an alarm was bad and when it was just a wait-and-see. Doctors would cycle through a few times a day and talk to me about nutrition and reflexes and brain development. The therapist would tell me when he was old enough to have a massage, to suck on a pacifier, to try to learn to eat. I took it all in. My contribution to his care was milk, clean laundry & love. Even those contributions were doled out under the direction of the experts.
As time passed, though, a slow metamorphosis would take place. The "experts" offered less advice, and I asked fewer questions. Instead of waiting to be given permission to hold him, I simply opened his isolette, adjusted his tubes & wires and held him. I knew what he needed and when. Part of me kept waiting to be scolded, to have him taken from my arms because I was doing it wrong, but the scoldings never came. Robbie stabilized more and more and both the nurses and I became more confident in my care for him.
The closer we drew to his due date, the more assured I became. In many ways, this was a great thing. Certainly, not being scared to break my son was a plus, but there were draw-backs as well. Gone was the blind adoration for the people who were saving my son's life minute to minute. Oh yes, I still appreciated them. Some I still adore to this day. But I also started to focus more clearly on Robbie, specifically. The neonatologists may be able to tell the differences in the brains of a 32 weeker and a 34 weeker, but I knew which way Robbie liked his blanket folded so he could sleep. I knew that even though he loved to be swaddled, if you bound his feet while he was awake, he'd thrash until he broke free and could throw his leg over the end of his Snuggli. I knew that if his saturation dropped while he was being held, he just needed to be suctioned, not that he needed his oxygen increased.
By the time we were ready for discharge, I joked that they were kicking us out not because Robbie was ready to go but because they were sick of me. I'd gotten too comfortable and was becoming particular about things, so we had to go. It was apparently to all involved that Robbie was best in the hands of his mother, not the "experts."
Of course, the advice of experts wouldn't end with our NICU discharge. We still had a pediatrician and a GI specialist and several therapists, plus the NICU follow-up personnel, and any number of other medical professionals guiding our choices. This was good, I think. Even had Robbie been a more typical baby, I had no idea what I was doing. Most new parents don't, even if they have a ton of child experience under their belts. The inauguration of parenthood isn't something you can really prepare yourself for. There is no training the readies you for 3 hours of sleep in 4 days while covered in vomit and still managing to sing lullabies over the sound of a screaming, overtired infant. And I wasn't just trying to figure out how those damned footed sleepers snap up, but how to get a child whose stomach was trying to escape out his throat to eat enough to live on.
We started Occupational Therapy early. We were hoping to teach Robbie to nurse, so even before he showed any delays, Robbie's OTa, K, came by once a week to work with both of us. I clung to those visits for more than one reason. Obviously I hoped they'd work and Robbie would nurse, but K was often the only other adult I got to talk to that wasn't my husband. When she was here, I had an hour with my hands free. She would let me take a shower without having to arrange the apnea monitor under the bouncy seat in the bathroom. I could pump without trying to simultaneously control both my breasts, two bottles and soothe a cranky baby.
K is also a mother close to my own age and one with whom I share a number of parenting ideals. It was nice to bounce ideas off of her and to laugh about the funny things the kids did. Even when she had no advice, just the reassurance that "Robbie looks good this week" was very comforting to me.
When Robbie started falling behind in his milestones, we added more therapy. First PT with J, then developmental therapy with C. We even briefly saw the world's most useless nutritionist. All came with their own suggestions and advice and I welcomed all of it. (Well, except the nutritionist. Seriously. She brought NOTHING to the table.)
Time has passed. Robbie has been under the supervision of therapists and other experts essentially since birth. We've been receiving at least weekly (usually bi-weekly and sometimes tri-weekly) visits from these experts for nearly a year and a half. And unlike the well-meaning but often misguided and unwelcome advice of sisters, friends, grandparents and strangers in the grocery store, the advice given by these experts is required. They have to come to our home and size Robbie up each week.
Each week they leave a report and note the progress he's made from the week before, what they worked on that day, how Robbie responded to therapy. As I'm working full time again, the therapists usually go to Robbie's daycare and discuss their observations with the daycare providers and I am kept in the loop with the written reports and telephone and email conversations.
For a long time, I've really appreciated their supervision. What did I know about internal rotation and trunk weakness? Or tongue thrust and gag reflexes? Sure, I knew Robbie wasn't crawling at 9 months old, but I never would have thought to assess the strength of his neck when he leans to the side. I was grateful to have the experts at my disposal.
But now we've been at this a long time. And while I'm not a motor skill expert by any means, I most certainly am a Robbie expert. Not that I know everything- I most certainly don't. But when my daycare provider mentions that Robbie's physical therapist disapproves of the length of his hair, I know that's out of the scope of her concern. I think I can manage Robbie's style without any suggestions from the experts.
What I'm finding is that I've reached the point that I reached at the end of our NICU stay. I'm more particular now. I know enough to know the difference between good advice and bad, to understand that just because he has thrown up more lately doesn't mean his medicine needs adjusted, it simply means he's had a cold which always causes a temporary flare up of symptoms. I may not be able to name the muscles in his arm, but I know what to put in front of him to entice him to extend them.
The trouble comes because while I'VE reached a point where I'd like to kick all the so-called experts out of our house and just live our lives, I don't want to deprive Robbie of the benefits of therapy. Even the therapy that I'm not sure is helping, I don't want to selfishly discontinue it and find that Robbie really was benefiting more than I know. I'm not willing to risk his progress for my possessiveness.
So we continue on as we have been. I will make more phone calls and write more emails. I will disagree with more recommendations, defend more choices. I will seethe quietly (or maybe not-so-quietly) when one of them oversteps. I will go forward confident in the knowledge that I know Robbie better than any one else. And if you suggest a barrette for his hair, or tea for his sippy cup, or that I just let him starve until he's hungry enough to eat, I will respond with my own suggestions. What you do with them is up to you. I'm an expert in Robbie, not an expert in blowhards. You'll have to figure out your own best path for yourself.
Of course, there were the tubes at the beginning of the month. And then he eased closer and closer to walking. Finally last Monday (1/25) I officially declared him a walker.
See for yourself:
Robbie also has acquired a few new words. The clearest of these is "hi!" He doesn't say it a lot, but usually greets me with it when I get him out of the car at daycare. I present 19 seconds of me trying to open the door, 1 second of "hi!"
He's also learned a few things I don't have video of, including knowing where his eyes, nose, hair, belly & feet are. He can now tell us what a monkey and kitty can say. ("ah ah" and "yeah" respectively.)
This last weekend, we visited his grandma Cox at her house and he discovered the joy of a light switch.
He's still loving music and really anything electronic. We've decided he needs a few more non-electronic toys because he thinks EVERYTHING has a button. Give him a doll and he'll push its nose trying to figure out how to make it work.
Give him something which requires hitting buttons for music and he's in heaven.
He was enjoying singing "row, row, row your boat" last month. This month he's moved up in the world with "Witch Doctor"
It's been a fun month, for sure. Tomorrow I'll try to catch up on pictures as well!
P.S. Robbie has had a yucky cold for more than a week now and the cough is rough again. He also has another double ear infection despite the tubes. We could use some good health prayers!