Wednesday, May 31, 2006

Whine, moan

Brace yourself. I'm going to whine a little. Last night, I dreamt I was hemorhagging and no one would take me seriously. They all just kept needing stuff from me while I was bleeding out. Sound like, ummmmm, motherhood? The dream has been with me today, she said darkly.

On with it then.

I am disgusted with nursing bras. Anyone who's used one knows that they lack shape, support, appeal, and heck, any remotely user friendly features. Some are better than others, true. But that's like saying that some flu bouts are worse than others: you've yet to encounter one you'd care to repeat.

I am tired of having to chase my tail over medical details. I will be on the phone tomorrow with the neurologist's office, trying to figure out why the chart notes still aren't here. Aaaaaaa!

There's enough crap floating about the world. Crazy people need to get themselves some help so they can give up contributing to it. If this is you, stop being defensive about it. Stephen Hawking needs a wheelchair and loads of specialized hard and software help every single day just to keep breathing, much less communicate. That's the help he needs. Figure out what you need and stop torturing the rest of the planet over it. Chances are the ones suffering the most because of your issues (and we all have some, yes, even you) are the ones who love you the most and would do anything to help you figure your stuff out. I mean it: anything. All you need to do is know that and breathe out a request for help. The universe and it's Creator stand waiting to deliver what you need in the most unlikely ways. Ask and it will be given unto you. Seek and you will find. Knock and doors you didn't even know how to look for will open. So ask. Seek. Knock. Live in hope, baby. Make some progress with yourself. Life is too short to do otherwise.

Well, shoot. Here I set myself up for a full head of steam late night rant and I find that I'm really lacking in material. Ha! Who knew?

Oh wait. I need it to stop raining long enough for me to mow the lawn--the bunnies can't keep up with it anymore. There.

I suppose I could always moan about people who are purposefully stupid. They get on my very last nerve. You know, the folks who bury their heads so that they don't have to acknowledge that there's anything going on so they can avoid personal accountability? Politics, etc. come to mind. Nah. This election cycle just isn't getting my back up. Hmmm.

Perhaps I could switch from a good complain to a list of blessings? Alrighty then, here goes. We'll start with the kids, because........ because I'm the mom, that's why.

Q is the cutest little guy ever and his laughs and progress keep me sane. (I'm not exaggerating.) If I feel that the world is about to devour me whole, it takes only a baby smile or coo of recognition and I am rescued.

S wants so badly to read and helping her do "M. muhmuhmuhmuhmuh--mmmmoon" a million times a day is so poignantly sweet it makes my stomach do flip-flops.

K is really reading well, though this is the age where she will insist that she can't read despite masses of evidence to the contrary. Goofy girl.

E has a humble spirit. Wow. This kid asks for forgiveness because she wants to preserve the integrity of a relationship. It is humbling to me to witness this and be on the receiving end of it.

G shopped this evening for a birthday present for a certain young lady in his class because she's nice and he appreciates that. None of us has any idea when her birthday actually is.

My parents. I do not know how they do it, having us here, working full time, and not losing their minds. Let's face it, the kids and I have some baggage right now, and the children seem to be at the height of their entropy careers. This is a safe place to be (as long as mommy doesn't snap under the rest of the details) and I am so profoundly grateful to have it.

Flowers rock. The rhododendrons in the woods are discreetly popping out red blooms. Something I always referred to as "candy flower" while growing up is out en force. It's pink, and precious to a person lower to the ground than us grown-ups. (It's probably a weed.) Some of the foxgloves look like they're going to be really tall this year, well over six feet. The plant that looks like miniature snapdragons is happier than we had thought it would be after having tree limbs dragged over it for hours over a couple of days. I wonder if it will be purple or pink in that bed? Hmm.

The cottonwood fluff, which should be making me crazy with allergies, is lying about in drifts. Depending on one's mood, it looks either like a late snow or like the lawns have begun to mold. Funny that it can get around so well in this weather, isn't it? It seems that it dries quickly and is wily. It is on a mission, after all. (To take over the planet, of course. You weren't aware of that?) I'm happy about not having major reactions to the stuff floating in the air this year. Perhaps God has given me a break this season? I like that idea.

I'm up early again in the morning. So I'd better head for bed. No, really. You should be too.

Sleep well.

Sunday, May 28, 2006

A good day

What a fantastic day we had yesterday.

Q is coughing, back on the nebulizer again, sighs all around. But the rest of the day was grand. We managed an impromptu potluck after church, then to escape all but the smallest of sprinkles while four adults entertained eight children at two seperate outdoor locations, all with good humor. The settings and sights were awesome, the children well behaved, the company spectacular. Wonderful.

Only one thing missing.

Saturday, May 27, 2006

Rain, rain

This morning as I was returning home from delivering the oldest two to school, the vehicle in front of me slowed precipitously. Luckily, there was nearly a quarter mile between us. There were three young deer crossing the road in the mist, into a horse pasture full of Scotch broom in full, brilliant regalia. All the cars paused to look and breathe in the moment. Sweet.

It's been raining. Forever. The sun comes out long enough to make the roof steam, get our hopes up, and deliver someone, somewhere a really great rainbow. It's out long enough for me to think that the beach umbrella resting on the front lawn must surely be ready to finish drying in the garage. Invariably, it is as I am placing my feet into my shoes that the sky opens up and a lake falls down in increments.

So my question is, if April showers bring May flowers, what do May showers bring?

Still no chart notes from the neurologist, dagnabit. Q made my day by getting his thumbs, alternating them, into his mouth and really enjoying them for a couple of hours this evening. I knew he would be a thumb sucker! He's rejected the pacifier completely since Gramma tried to give him--gasp--a bottle of breastmilk last night while I was at the kids' school program. He cried and wailed and mourned like a professional. At bedtime, he still wasn't speaking to poor Gramma. It's hard to forgive a person for pulling something like that. Trying to feed with a bottle. The nerve.

Q's therapist said that she's seeing real progress from week to week. It's nice to hear, since I'm just slogging here and haven't the most objective vantage point. He seems today to have sort of woken up, again. Which is to say, the neurons are firing and he's achieving things, developmentally speaking. His tone is more relaxed, but he's sitting up straighter, longer. His head control is good, even when he's turning. He even seems to be reaching for things. It's hard to tell, though, because of the visual issues. Perhaps his development curve is just flatter and longer. Let's go with that.

The rain has let up. I'm thinking I won't bother going after the beach umbrella in the dark. If I do, the rain that will inevitably be loosed over the house will wake everyone as it hits the skylights, our amplifiers. And I want to sleep while it's still quiet.

I hope your holiday weekend is long and blessed. May you have a little bliss, in some manifestation, and some snuggles with someone for whom you are everything.


Thursday, May 25, 2006


K is wearing her bangs in braids tonight as she sleeps. Just her bangs. Why? Because she's growing them out, they're bugging her, and I needed something to make her laugh. Ta da! I had no idea it would be quite so well received. E gave her a nice back rub (lotion, too, never mind that it was sunblock) and between the two of us sufficiently humoring her, K was out like a light. She's the middle one, you know, so there's sometimes just the faintest edge of paranoia that we're all in on a joke that she either hasn't heard all of (which is very bad all by itself) or is (cringe, wince) the butt of.

To the best of my recollection, she has never, ever been the butt of any joke. She is vigilant, determined that it remain so. E was telling tonight about the funny "squeezy containers" for condiments that Costco had and how she just laughed and laughed every time she saw or thought about them. K was so concerned that E not be laughing at her. Maybe it's not a middle child thing. Maybe it's a girl thing. Aaaaaaaaa!!!! There are three of them. Will I survive the girl thing? C'mon. Whip out your crystal ball and tell me.

It's a good thing they're cute, even when they're paranoid, foot-stomping, howling balls of rage. Especially then. Yesterday she brought Gramma the remainders of her root beer float and said, "Here, Gramma. I don't need any more. I'm sweet enough already." Big grins. Yes, she is. Almost all of the time, which is more than some people get. So I'll remember that and save it for later, when we don't "feel like" putting away our clean laundry. Grrr.

Anyone have pointers for me here? I had no sisters, so I feel just the wee-est bit out of my depth with this girl thing. Do I need to increase my life insurance policy to pay for their therapy should they drive me to an early grave?

We'll be fine. Breathe, breathe, breathe. How early does PMS start, anyway?

I shouldn't complain, really. They're great little shoppers. We hit up the Children's Place a few days ago and man, they are such girls! They were finding sizes and colors and coordinating outfits like mad. We walked out of there with three gigantic bags and one medium bag for $152 and change. I love those 50% off sale price sales. And the girls seem rather talented at this. Oh dear. Maybe I should up the life insurance to help with the impending shopping habit...

Croupy little guy's coughing. Argh. It just makes me weep with frustration to have so little I can do for him. Poor baby. Given all the rest of the crud he's having, shouldn't he get a free pass on ever having a microbial illness? With whom should I file that complaint?

Off to Q and his sweet, fat little cheeks. Aw.

Rest and be restored.

Tuesday, May 23, 2006

Funny girl

So S is chattering away to Gramma as they're getting dinner together. "Look, Gramma. First you have the summer, then you add the salt--sommersault! Look! See my summer and my salt?"


I hope I don't ever completely crack up to her face. I'd hate to sensitize the poor thing to mommy's looney sense of humor; I so enjoy hers, just as it is. What completes the picture is the fact that she, the skinny kid, buzzes around like a bee on speed most of the day, but is knocked out cold in under three minutes by me reading Bible chapters aloud at bedtime. I wonder what her sub/unconcious does with that? "And Joseph kept Simeeeooooooon....." Thunk. And she dreams all night about the guy in the rainbow coat and his crazy, sociopath brothers and their donkeys with feed sacks? Do you think in her dreams that the bags of silver do little dances to Disney-esque music? Five, six, seven, eight..... "He put us baaaaaack/ Back in the saaaaaack...."

There's a reason I skipped over the story of Lot. Poor S has all she can handle without the salty wife, never mind his wretched daughters.

Q was especially fun and snuggly today. Letting go of his tone easily when we were doing stretches, working to corral that unruly thumb that kept escaping his mouth. I love baby drool. Good thing, too. It was a no shower day, so I've got today's drool and a nice foundation of baby drool build-up from yesterday. Hey. At least it wasn't spit up. That would be a whole other story. Yee-ech.

Well, my day is complete. I've just dispatched a mosquito midair. Take that, Ralph Macchio. (I know it's not the same thing, fly eyes being what they are. Just let me have my moment with my tired reflexes. Thanks.)

Hugs and kisses for those little ones. Sleep well.

Sunday, May 21, 2006

Spring at home

You may have noticed the adsense links above. After much dithering, I've jumped in. The kids need crayons (or Prismacolors and Dover coloring books), I need some help supporting my book habit (said totally tongue in cheek). Seriously, it's income, however small. Please click away. Thank you.

On other fronts...

Q is nursing and has gotten his hands together--a very big deal and good sign, as is his laughing. While he's eating, he's kneading his little fingers together, as though, suckswallow, suckswallow, he's, suckswallow, breeeeeeeathe, plotting to overthrow something big. Suckswallow, pause, "mmmboo," says he, talking with his mouth full. And his focus shifts to kicking, tongue thrusting, having a conversation. Sweet boy. "Aaaaaaa," tongue, tongue, tongue, "Ng-goo." I wish could speak the language. A soft, "Mmmph."

Yesterday, on our way out the door to church, S spots a big slug on the sidewalk. "Mama, that's a banana slug." Yup, I say. We walk on, down the steps to the driveway. More slugs, smaller ones. "And that one is a strawberry slug." Stands to reason. It is smaller, after all.

Last week, same girl brings an LP she found next to Papa's stereo to the dining room, where we're almost ready for dinner. She's gotten it out of it's jacket and is holding it up. "Looook, mom! It's a giant CD!!" It was all I could do to get through the explanation of how we hold records (and what they are) without cracking up completely. I feel so old. Waaah.

It's raining, thundering too. A lovely spring storm, watering the lemon trees out front in their pots and the clouds of forget-me-nots dotting the property. There are foxgloves and peonies and poppies budding. The red maple and pink columbines are dueling for best of show for the week. Buttercups, lily of the valley, daisies, violas and violets are tucked in under the earlier blooms. The siberian iris greens are up, the lavender is heavy with buds and even the daylilies and curly willow, which appeared to have been decimated by the tree falling and it's ensuing removal, are shooting out green stuff like mad. The red lilies and their even more bodacious friends, the Casablancas, are sending up their summer stalks. The butterfly bush is fluffing out, for later in the summer, and a couple of primroses are nosing out, tentatively, checking for further falling trees over their bed, no doubt.

This is a beautiful place. The bunnies think so too--Friday afternoon two were playing tag on the front lawn, then running circles around the house. A robin was refereeing, making sure things didn't get out of hand. It was endless entertainment for two little girls who had "puked fourteen times" the night before and were happy to just hold still, watching. There's a thrush outside in the mornings and evenings, a resident woodpecker, the occasional raccoon or deer wanders through the brush around the Douglas firs. Sighs of contentedness all around. There's the thrush now. Wow.

Yikes. There was just a very close lightening strike and the biggest crash of thunder I've heard in a long time. And now S has soap in her eyes in the shower, so I'm off to the more usual, less lofty things, snapped out of the reverie.

Have a lovely evening. Smell the rain?


Saturday, May 20, 2006


He laughed. Belly laughed. Baby giggles.

He laughed.


Tuesday, May 16, 2006

Enough already

It's official. I have no neck. My head's other occupation as battering ram has resulted in it having sunk about level with my shoulders. My hair's still visible, but only just. What's that you say? Sounding a little looney, am I? Well, I confess that I'm fighting the urge to curl into a fetal position and pull the covers over my head and just never come out. Helphelphelp...

Q saw the neurologist this morning. The MRI was very helpful. It was not good.

As I understand it, one needs a great deal of variability in the surface of one's brain--all those squiggles and bumps (invaginations) represent a huge surface area which in turn represents the number of neurons in that brain. Q's brain is pretty smooth from about the middle of his head to the back.


Though he's showing progress with therapy and it is impossible to know for sure the extent of things until he actually does grow and gets a little older, an MRI result such as this tends to indicate "severe" mental retardation (MR). On the scale, measured using a standard test, there is mild, moderate, severe, and profound MR.

Quoting the University of Michigan Children's Hospital website...
"Severe (IQ range 25 to 39): Preschool-age children with severe MR have delays in motor development and little or no communication skills. With training, these children may be able to learn basic self-help skills, such as feeding themselves and bathing. As they grow older they can usually walk. They may have some understanding of speech and some response to it. As adults, they can get used to routines, but will need direction and supervision in a protective environment."

I find that I can't stop crying.

I was prepared for something more along the lines of mild to moderate, I guess. I mean, there's no denying that he's not quite up to other babies his age developmentally. But he continues to progress and that should continue in perpetuity, right? That's how it works, right? Apparently not.

He may never be able to function without a guardian. According to the neurologist, he will more than likely never be able to function without a guardian. Babies brains are very mobile and do often correct for all sorts of deficiencies, but this appears insurmountable. It sounds like sort of a black hole where his visual cortex should be...

I don't know how to wrap my head around this.

This, all by itself, is more hell than one little guy should be expected to tolerate in a lifetime. Poor choices shouldn't even rank. People with no self-control should just plain step off. This makes me so angry. So terribly, unspeakably angry. Back to that free will thing again. Gag.

I guess this would be the place to insert the ten-ton swear words. There just, truly, aren't any appropriate enough to bother uttering.

The neurologist's chart notes should be en route to me by next week, so I'll have more real info then. I wanted to, but was too thunderstruck to say, "Use the big words, please. They confuse me less." So there's a great deal I'm not as clear on as I'd like to be. What he was very clear on is that there's plenty to do which can maximize the building blocks Q has. It's just that those blocks are not enough to do the job, as it were.

Q will probably have the eye surgery sooner rather than later and that will help, but it will not fix this. Q will have a visual assessment to determine how best to stimulate him visually without overloading him, which happens more quickly for him than in other babies. Q will have a lot of therapy and the best of nutrition (a nursing mommy who is taking vitamins and supplements and could feed a small country with the extra milk). But it will more than likely not be nearly enough.

There's no name for this--I'm sure there is, but it's not a syndrome or anything. We'll trot off to a pediatric geneticist after awhile to rule things in/out on that front. It seems that something happens at the beginning of the second trimester of pregnancy to cause this, though we will probably never know what it was. Let's see, where was I at the beginning of the second trimester? Oh yeah, that's right. In an emotional free fall into Hades. Huh. I wonder...

Well. I'm not making much sense, and the little squirt just awoke from what I was sure would be an hour long nap, so we're heading off for groceries.

Thank you for lending your good thoughts, extra strength and prayers on all sides. I cannot tell you how much it means to me. To us.

Sunday, May 14, 2006

Happy Mother's Day (from the beginning)

A year ago, early Mother's Day morning before the kids were up, I was staring at a pregnancy test. I turned it over, to see if there was any other possible interpretation. Nope. Surprise! Happy Mother's Day!!

I went on to Costco (with the considerable help of a friend, because I was either in shock or already in the throes of "morning" sickness) and on the way home, dropped by the hospital with sustenance for the husband. I was grinning at him like a goon, kept kissing him, he asked what was up. I just shook my head, told him I loved him and that I'd see him at home the next day, after his night on call. I wanted to think up some fantastic, creative way of telling him that we were having a baby and it wouldn't be in the patient pick up/drop off zone.

So much for that. When he arrived home the next afternoon, as he was getting ready to drop into bed, I stood across the bed from him, still grinning, and said, "I have something to show you."

He squints, not having slept in about 36 hours. "Is that a pregnancy test?"

"Yup," says I. I turned it over and held it out. "I even checked the back to see if there was any other possible interpretation of the two little lines." I looked up at him. He was grinning. I was blushing.

As I tucked him in, he was still chuckling. Over the next few days, he called a couple of times a day as he was walking from building to building, sometimes just checking in, often telling me that he couldn't wipe the silly grin off his face. Sweet man. We joked about how funny it was that I was pregnant, since he was home so little with his hideous internship hours. (He'd had a few days of vacation in April, however. Ha.)

I felt rather in awe of the universe. Not that it wasn't going to be more work than I'd planned to be having, more diapers (now that S was potty trained, darn it), less teaching the bigger kids to snorkel, or taking trips at the drop of a hat. The news of a baby is reason for celebration of God's manifest grace, reason to hope for humanity, renewal, even if it's less "convenient" than one's original plans. These little ones grow very quickly. Even if it feels like eternity in the midst of the spit up, the dirt, the ubiquitous laundry, childrearing years represent under a third of one's life. And, again, what else could I be doing of this enormous consequence? Nothing. (Besides, the skills required to do any portion of motherhood well will almost certainly stave off Alzheimer's. Forever.)

Meanwhile, I was rapidly feeling crummier and crummier. I've never been as sick during pregnancy as I was then. I'd never before taken anything, other than ginger, for pregnancy nausea. This time, I could barely make it through fixing peanut butter sandwiches. The consistency of the bread dough as I was kneading it, even watching it go 'round in the KitchenAid, made my stomach roil. I woke up in the middle of the night feeling pukey. I finally gave in and took Zofran. Oh, sweet pharmaceuticals! I learned all sorts of useful things from this experience. For example, that the more desperately one needs sublingual Zofran, the worse it tastes. Think nuclear marshmallows. Ack. The ginger honey syrup was great (thank you, K) and ice water was my constant companion--I think sipping it nearly around the clock kept my throat just constricted enough, if you know what I mean.

I had a couple of early ultrasounds because the wonderful OB thought at the first one (5 wks) that perhaps the egg sac was empty. For all of my shock at being pregnant with a fifth child, I was briefly in a state of outright panic. On my way to the second appointment, I was thinking, "What if it is empty? Then what?" A small voice in my head said, "It's not, and you know it. Everything will be fine." Hmm. I'm not accustomed to hearing voices...

At about 9 weeks in, I had the oddest visual blips. Not like hallucinations, not actual visions. Just a flash of a picture in my head of knives flying at my belly. All kinds. Paring knives, vegetables peelers, apple corer. I was a little alarmed, but hey, pregnancy is just kooky in general. After about ten days of this, no more. All the while, the wonderful OB (and she was, truly) keeps insisting that I will need an amnio and I'm in the midst of a high risk pregnancy. Bah, I think. I have four perfectly healthy children and had only the smallest of concerns during those pregnancies. And I'm so close to the cut-off for the aged mama business.

On the fourth of July, I took a header off my bike while trying desperately to will K away from the tree she was flying toward on her own bike. Twenty four hours later I was spotting, convinced I was in the midst of a miscarriage. It was a long night. I had "the voice" in my head again. "Protect the baby." I closed my eyes, feeling cool, liquid titanium pouring over us both, a shield from whatever was coming next. I was practicing peeling myself off the ceiling, breathing deeply whilst bedding the kiddoes down. Worrying as I carried S, sleeping, up the stairs. What if I was losing this one? "Protect the baby." I was calmer after the kids were asleep, but I did not sleep well. The next morning, another ultrasound--no sign of placental abruption, heartbeat strong and steady. Relief.

In the midst of the bottom dropping out of life on other fronts, I took other prescription meds for even worse nausea and so I could sleep. Initially, I lost eight pounds in ten days because I couldn't swallow real food. As very kind people poured protein drinks into me, the weight loss turned on a dime. I had a couple of rounds of antibiotics for what turned out to be an infection that could have induced labor at about 17 weeks. Still, lots of reassurances from the professionals that none of this would affect the baby.

At about 19 weeks, I had the usual anatomy ultrasound scheduled. It's a boy! "Wow," I think. G will be so thrilled. E and K had been praying since S appeared to be a girl on her ultrasounds for a baby brother for G. I'd told them they could grow up and have their own boy babies, as I was done having babies. That's the last time I edit my kids' prayers, let me tell ya.

After the ultrasound, I went on to the appointment with the OB. I joked about having turned the weight loss around. She blew right past that. She was intent on the fact that the ultrasound showed some anomalies. She talked about a brain anomaly, but was most worried about abdominal ascites; she'd had to look it up. She put in a call to a specialist. Yes, I would need appointments with perinatologists, more ultrasounds. I felt as if I was ricocheting around in my own head, a feeling I've become more familiar with as the revelations have continued.

The perinatologists were great. The punkin and I had an ultrasound every month, avoided the amniocentesis on the principle that it would not provide more diagnostic information but did carry a small (but real) risk, and then NSTs (non-stress tests) twice a week for most of the last trimester. There was the fetal echocardiogram ultrasound, which also spent a little time on the rest of him, just to check things out. I went flying in to the hospital once with contractions when I was especially worried about the kids. The contractions settled right down as soon as I was hooked up to the monitor, thank God. Later on, the pediatric surgeon was also great, drawing diagrams, talking about everything calmly, but not at all in a patronizing fashion. He mentioned a tubule that was still open from the little guy's belly which could turn out to need surgery, but would likely close on it's own. That was the first I'd heard of that.

It would seem that about the time I was having the "visions" of knives flying at my belly, Q was leaking bile from his still forming liver into his abdomen. Remember the high school chemistry experiments which involve mixing two clear liquids to create a precipitate, like snowflakes in water? The presence of bile in his belly caused something similar--"calcifications" were visible on ultrasound. The manifestation of a substance where it ought not be. While looking always at whether or not he was having further issues in his tiny belly, we were also watching the rear of his brain for "mild ventriculomegaly"--a condition which can mean lots of things, or nothing. It did not appear that he was continuing to leak bile, but the number of calcifications, and the fact that they were so visible continuously, instead of becoming less noticeable as the pregnancy progressed, was noteworthy. As for his brain, the conventional wisdom is that boys tend to have larger ventricles and that slightly enlarged ventricles tend to resolve. In the range of the initial measurements we were seeing, it's hard to know if the numbers truly indicate anything other than perhaps the fact that a different ultrasound tech is viewing the brain on a slightly different plane. Something slightly off straight coronal or sagittal planes would be difficult to replicate and the variability in those measurements could be insignificant. Or not. As it happened, the measurements increased in the later ultrasounds. Not good.

(Added 5/21/06:) In fact, I had asked my OB and at least one of the perinatologists if it was possible for babies to have seizures in utero. I got the oddest looks. There's a definite difference between hiccups, which he was also having, and what I would describe as seizure type activity. The former is a bumping sensation, while the latter is the baby stretching out fully, then relaxing, repeatedly and rhythmically.

Because of the very real possibility that Q would need intervention at birth, I delivered at a hospital nearly an hour away. It's likely that a closer one could have dealt with his needs, but when the pediatric surgeon said, "The people at ___ are very good, and we can always airlift if we need to." Uh-uh. With everything else, I was not about to add the possibility of a helicopter ride for a newborn to the mix. Even if he'd been fine with transport, I'd have been stuck inpatient somewhere else. No way.

When I arrived at the hospital, I was having contractions every two minutes. They stopped. Yup. Stopped. The nice perinatologist who was on that night errs on the side of almost hypervigilant, and decided I'd had enough. Besides, I was dilated past 4cm with my fifth term baby and if they sent me home, it was a pretty sure bet that I wouldn't make it back there to deliver. Not good. So I was admitted. This particular hospital has an OB triage and then, when a mama is admitted in active labor, the RN stays with the laboring mama until the baby is born. If she needs a break, another RN comes in. Awesome arrangement. And awesome nurses. Everyone was great.

Q's heart rate dropped to 75 at the end. The attending had already requested the vacuum as he was watching the monitors even before I started pushing. He and the residents were very busy, I was pushing without contractions, and suddenly, out came the little guy, cord around his neck. His APGARs were 8 and 9 and, for a personal touch, he managed to pee on the NICU team. What a guy--a sense of humor and boundaries and only a few minutes old.

I held him very briefly. He was (and is) so beautiful. There he was, looking around, wrapped up tight. They had to take him quickly to start the contrast and x-rays and ultrasounds and CTs and the IV and other monitoring. He was whisked away and then there was stuff to do. I had to call the kids to tell them their baby brother had arrived. I had to start pumping, since Q was NPO for 48 hrs while they did the contrast studies on his little tum to make sure he could be fed. Then there was the starting with bottles, working up to full feedings, getting him to nurse--apparently, when babies are on a dextrose IV, they are pretty sleepy and often have trouble getting the sucking thing down. So he had an NG tube while we worked on his suck/swallow skills.

(Added 5/21/06) At one point, I had asked a NICU nurse about the rhythmic stiffening/relaxing that I was seeing in Q as he was lying in his isolette and feeling as I was holding him. I wondered again about the possibility of seizure activity. She noted it, though she hadn't seen it herself, and suggested that I bring it up to the neonatal doc and residents who were coming through on rounds. As I was asking the doctor about this, Q began what was the longest episode I had observed, perhaps twenty seconds or so. The doctor, standing on the opposite side of the isolette, said, watching, "Eh... I don't think that's seizure activity." Now that I know a little more about types of seizures, I would describe it as myoclonic (which the neurologist did, later), which doesn't look to the general public at all like what we would typically think of as a seizure. Q was simply extending himself fully, fists up on his chest, in an eerily strong flexion, then relaxing, and repeat, repeat, etc. He was not bothered by this at all. It happened mostly in his sleep and he kept right on sleeping.

At the end of Q's stay there, I met the neurologist who we'll be seeing again this week. He's very thorough, takes his sweet time. He spent half an hour explaining to me what we would be doing next regarding the ventriculomegaly. He said that, by itself, the agenesis of the corpus colossum and variation in the ventricles visible on the CT and ultrasound would not worry him too much. Baby brains are plastic and capable of extensively rewiring themselves in order to be functional, even brilliant. But, since Q's head circumference was slight, especially in comparison to the rest of him, he thought we should get an MRI at about 4 months of age. That age is the magic number for risk of anesthesia dropping off considerably. So my instructions were to contact his office at about 4 months, unless the baby's head measurement changed dramatically, roughly 5% up or down, and see the pediatrician more frequently for monitoring.

Q had five days in NICU before I could take him home. The kids came to "help." What a hoot. I think they were just in awe of the little guy. They were so great, and really trying to be helpful, bless them.

The following weeks were uneventful for Q, except for colds, bronchiolitis, pneumonia, which resulted in inhaled steroids and Albuterol treatments, and no sleep for me. At about our second check-up type visit, the pediatrician came in with a chart. She had replotted the measurements from NICU to present and found that his head circumference had dropped from the 17th% at birth to below the fifth. That was the beginning of this blog.

(Added 5/21/06) Interestingly enough, after that first visit with the neurologist in which he took an extensive history for a little guy only weeks old, I came home and googled "in utero seizures" and guess what popped up? Infantile spasms. No wonder the neurologist was so sure that Q was having seizures. It turns out that many mamas whose babies have seizure issues, especially infantile spasms, report having felt seizure like activity prenatally. Whaddya know. And about those odd looks from the professionals? It turns out (according to papers I found online) that report of in utero seizures may have a strong correlation to later diagnosis of seizure disorders, but it's nigh unto impossible to study, so no one does.


So Q had his MRI on Friday. He sailed through the anesthesia, thank God. They put him under with a tiny little mask in about fifteen seconds, then started the IV. It was so much better than doing it the other way 'round.

The not feeding him part just plain sucked, but he did fairly well even with that. After he was done, the recovery room nurse tried a high glucose Similac bottle with him, which just made him mad. He was so hungry and discombobulated by the anesthesia that it took him a while to be able to nurse, then settle enough to burp and nurse some more. He was a sleepy little dumpling for the rest of the day. He tolerated the meds well, but I think he was still affected even yesterday. His tone was decreased, more like a normal baby younger than he is, but today he was right back to being himself: chatty, happy, "looking" around to find the source of sounds, napping in the morning like he likes to do, and outside later--a favorite place of his.

Sigh. I'm so glad we're done with that part. (Fingers crossed, eyes heavenward.)

Friday afternoon, before we were even home, the neuro office called to say that they'd had a cancellation, could I be there on Tuesday this week instead of Wednesday of next week? Yes, yes, yes. Let's not sit on the pins and needles any longer than absolutely necessary.

So this week I must get G's glasses picked up, kids to counseling, Q to neuro and therapy, reschedule his shots, then piano, and it's the gymnastics show Thursday evening. Oh, the kids will be so excited. What a week! I think I'd better get over the feeling that this level of activity is unusually busy, whaddya think? I'm considering how to get the kids involved in a couple more extracurriculars--K in a girls' choir, for example. And I want to get them on to the next batch of history fun. Never a dull moment, eh?

I love this mommy stuff. It confounds me regularly, knocks me to my knees in good and bad ways, leaves me breathless, keeps me on my toes. And it is the biggest blessing I could imagine. Wow. I couldn't have cooked up anything this great.

Kiss your babies an extra time and have a good, joyful, calm, and resilient kind of week. I'll be back with the news from the neurologist.

Rest well.

Sunday, May 07, 2006


So last week was not nearly as busy as the previous one, thank God. This one will hold it's own, though.

At PT, Q's therapist and the OT in charge of orthotics were really excited to see that his thumbs are out. He's been wearing his little splints for about ten hours every night, and I'm working on the webbing between thumb and forefinger 2 or 3 times a day. He also gets rubs on his teeny little pecs, biceps, and lats and I'm trying to get him to cooperate with PNF (proprioceptive neuromuscular function*) therapy because it's benefits are 2-3 times that of just rubbing the muscle from one attachment through the belly of the muscle to the other attachment. Also, I started doing stuff to get him to actively touch his feet and then cross the midline with hands to knees and toes. I'm continuing to work to have his arms positioned appropriately when he's on his tummy, and he seems to be resisting that less.

The night before his last appointment, Q had awful reflux. He couldn't settle down for anything and when he finally passed out, I realized he didn't have his splints on. I can't get them on tiny sleeping hands--it's like trying to build with soft-set jello--and I wasn't about to wake him up after the evening we had. So I watched his little hands off and on throughout the night. His thumbs were outside his fists. But, best of all, most of the time, his hands were open and his thumbs were almost at the appropriate angle! None of this sounds like a big deal to the general public, but let me tell ya, the therapists and I did a happy dance right there. That much improvement in just two weeks is amazing, and it bodes well for the possibility of future improvement.

Based on all that, it would seem he's beginning to recognize that he has hands and feet and is beginning to initiate activity with them. Friday morning he grabbed his toes when I was working on his right side. Yesterday, a friend was holding him and he actually grabbed a Skittles package that she held up against his fingers!!

I feel so terribly grateful to have some formal training in massage. Otherwise, the learning curve, which is steep anyway, would have me unconscious on the floor with appendages flailing in the air. Oh dear. Now I'm having visions of dying cockroaches. Neat.

As busy as things are around here, last week was much calmer and the results of the effort expended obvious. It was a good week. We even made it to church earlier than we have since the punkin was born!

On Tuesday, Q has shots and measurements. Poor baby. This coming Friday he has his MRI. Big sigh. I am worried about the sedation, and keeping him hungry for that so he won't spit up and aspirate. I haven't heard from the anesthesia people yet, so maybe he won't have to starve. He doesn't do hunger well at all. I don't know many babies who do.

On another subject, I'm requesting prayers from the planet at large for the events of Monday. It's going to be a big day for my family and I desperately want there to be good things out of all this for the kids. If there was anything I could do to stop the trauma I would. I would give anything, anything, to be able to fix this for them... So I'm praying that there will be cool heads all around, that the people who will be in that room together will be compelled to do the very best things that can be done. And that I won't lose my mind while walking a road I never would have chosen. Your thoughts and prayers are appreciated.

Thanks for hanging with me in all this. The support, in all it's many forms, astounds me. You all are awesome and I will never be able to adequately express my abiding gratitude.

I'm going to try to get back here very soon and write more about the whole story of Q. In the meantime, have a blessed, calm, irreplaceable week. And remember to tell your family that you're happy they're yours.


(*Edited 5/19/06: It's "facilitation" rather than "function." Doh. Hand slapping forehead. If you're interested in learning more about it, google "facilitated stretching," which also happens to be the name of class and textbook I had in massage school.)