Two heads are better than one

So it stands to reason that one blog must be better than three. Seriously, I'm getting all multiple personality trying to keep everything separate. The reason I started three distinct ones is that Blogger, bless their souls, doesn't allow for tagging, and I wanted to be able categorize the posts. I finally broke down and made the switch to WordPress, so I consolidated the blogs into FeedYourNeed, and decided to host it on my own domain. Come on over for a visit :)

Past: Wherein my world stood still and everything else just marched on by

I committed the unforgivable and scheduled our baby's surgery on my husband's birthday. It was a routine tonsillectomy/adenoidectomy…an outpatient procedure. For those of you unfamiliar with the term, here's a little synopsis:

Outpatient means taking your kid home in a few hours.
Outpatient means no big deal.
Outpatient is like getting a tune-up.

Sometimes, Outpatient also means the end of the world. He got out of surgery a lot faster than expected. Walking into Recovery, I scanned each bed looking for our boy. Old man, little girl, guy in pain, jesus look at that poor kid, bald woman…he was not there.

On the second pass I realized that the poor kid all cyborged out with tubes and wires everywhere…he was ours. The doctor's voice kept cutting in and out like a bad connection,"…really sorry…so lucky we caught this….airway 90% occluded…emergency tracheotomy…" And then silence. His mouth kept moving but nothing came through.

Everything slowed down. I left my husband standing there, adrift in the middle of the room with the doctor and walked up to the bed. He was awake and crying. Still no sound. His little fists were balled up and his face was purple. Still no sound. Sticking out of his perfect chubby neck was a little blue tube. His mouth was open, screaming and silent.

And then the sound came rushing back. I heard alarms going off. I heard monitors beeping. I heard people talking. I heard air angrily hissing through that tube, bypassing his vocal cords. It would be years before we heard his voice again.

We spent two weeks in the hospital. No spare clothes, no toothbrush, no deodorant, no money, no idea of what was to come.

Six years after the fact, my husband started celebrating his birthday again. This gets wrapped up in fancy paper and hidden in the back of the closet.

Past: Killed the baby while napping again obstructive sleep apnea

He came home from the hospital with some pretty fancy accessories...that weird blue pacifier, a green and white afghan knitted by volunteers from the granny farm, and a useless piece of shit apnea monitor.

Apnea derives from the Greek word apnoie, meaning: "Oh my God the baby's dead, no...wait...just not breathing". The monitor we were issued didn't measure how much oxygen was floating around in his system. It didn't check to see if his heart was still beating merrily away. It just wanted to make sure that his tiny chest continued to heave mightily up and down.

I asked his pediatrician about also monitoring O2 saturation and heartrate, but she laughingly blew me off. You're just used to the NICU. Relax, you know your baby. Everything's fine if his color is good. Soooo....armed with nothing more than blue=bad & pink=good, she sent us out into the big wide world.

Turns out, it was not that simple. He snored like a half-strangled warthog. Truckers, hibernating bears, 500 pound aunties...he put them all to shame with that sonic weapon of a snore. It sounded like he was choking to death all night long because, well...he was.

When you go to sleep, your whole body relaxes, including your airway. His chest would make all the motions required to whoosh in great lungfuls of air but only a tiny fraction actually squeaked through. Sometimes not even that. He would rattle the hatches with his snort_cough_sputter routine and then...dead silent.

Quiet was my cue to frantically reposition him in an effort to get the air moving again. I'd push his head back in a textbook rescue breathing pose. I'd prop him this way and that using bolsters made from old hiking socks. I'd stroke his cheeks, tickle his feet, but a lot of the time I'd just have to wake him up.

When I brought this up to his pediatrician, she let me know that it was *ok*. Those babies snore and wake up a lot at first. New moms don't get a lot of sleep, you know, and it's hard for everyone at first. Don't worry, you'll adjust.

And I did. I became a super light sleeper. All night long, I'd doze, listening for the quiet pauses. All night long I'd startle awake to the horrifying silence of a Blue_Baby. I'd be terrified I was too late. I'd cut deals with God and bargin with the Devil as long as he was still alive enough for CPR. I felt so guilty and negligent for sleeping.

For two miserable years, we tried to get anyone with a medical degree to really listen to what we were going through. Subconsciously, I think there is an underlying belief that when you have a disabled child, life sucks and that's all there is to it. Snoring and a degree of obstructive sleep apnea (OSA) are standard for kids with achondroplastic dwarfism. But his OSA was so bad that it enlarged his heart, he failed to thrive, and ended up trached for a few years.

He still has OSA issues that come and go. I don't even know how to sleep without listening for his death. It is morbid and fucked and I'm so god damn tired.

This apparently goes under my pillow every mother fucking night.

Present: Back To The Grind

When he was a baby, my primary job description didn't seem to be "Fun Mommy type who plays with me and takes me to the park and tickles my toes and makes me laugh". It was more like, "Air Traffic Controller who makes sure all my appointments are logged and successfully executed. Also ensures no appointments try to land on the same calendar slot simultaneously."

If you look at those calendars, the weeks are jam packed with doctor's appointments, physical therapy sessions, occupational therapy sessions, speech therapy sessions, sessions of sessions...Ugh...his dance card was seriously full.

It was a more than full time job just keeping track off all the activity and making sure everyone was on the same page. And then there were the insurance wars. I am sick to my stomach just remembering.

We had 4 or 5 months this year when it seemed like life was easing up a bit. I actually thought he was going to get his first real summer. Full of sandy swimsuits, starry campouts and maybe even robot day camp. Instead he spiraled down on most fronts and now the band seems to be playing his song on a continuous loop because his card, it keeps getting more full every day.

I am burnt on the medically fragile lifestyle. He's such a cool kid. I hate that he has to go through this crap.

This doesn't get packed away into anything. I can't pry it from my fist.

Going Back On My Word

I lied, I'm sorry. I really wanted to start from the beginning and blog this to the present but there's more to wade through than I thought. Additionally, the Summer from Hell is stretching on out into Fall and I need to blow this crap out of my head before I fester and bloat.

Henceforth, I'll be tagging my posts with Past, Present, or Future, so that you, gentle reader, can remain certain always of When we are on the timeline of our little saga. Thanks:-)

X-rays don't fit in my scrapbook

It sucks to look back on what you thought would be the happiest times and realize that your cute baby picture to x-ray ratio is way the hell off. We have like 15 pics, tops,in his first year. The rest is a stack of x-ray film and calanders full of doctors' appointments, therapists' visits, early intervention classes, trips to the ER and hospital stays.

We recently moved and I'm still unpacking. Came across a Baby Milestone book my mom got us when TheBigE was born. I cracked it open and looked at all the crisp, empty pages for celebrating first steps and first words. 8 years later and it's still unused. I keep waiting for a quiet time when there are no crises.

No matter how. hard. I. try...I can't fit these frickin'_frackin' x-rays into the Big Book of Blissful Babyhood. I've tried. Really. All I end up with is a lovely scalloped border on a sticker laden film that is still way too ginormous. Sigh. Maybe I'll frame them and put them up on the wall. It is October, after all.

At least I have all the doctors' reports. I can cull his milestones out of their notes. And we do have his sweet little dwarf hand immortalized in black and white, chubby fingers like ghosts wrapped around skeletal fist.

This I slip carefully back into the film cover and don't put away because we still need them. Just not as often as we used to:-)

Get Out Of My Face

If a sucker is born every minute, it won't have been a preemie. My little guy's sucking reflex was not particularly strong, plus he was instantly suspicious of the aftermarket NG tube those doctors installed on his face. In fact, he was convinced that the teeny tiny tube slithering up his nose and into his stomach was a poor execution of a really bad idea. He made a career out of ripping them loose.

The tube is an alternate fuel delivery system. After a round of half-hearted nursing, you can supplement with a syringe full of formula. It works great until your two week old bundle of joy figures out the whole boob = food concept. Then you're not saving him from starvation anymore...you're overfeeding him until he vomits.

So, just for the record: *spit-up* is normal. It's that little urp saying, "I think I'm full now, thanks for lunch...here's your tip." When Baby's head spins and disembodied voices possess his vocal cords...not normal. When he morphs into a milk-spewing volcano...not normal. When he gets all freaked out at feedings because he knows you're going to try to drown him from within...definitely not normal.

The NICU staff wouldn't believe me when I said he didn't need the tube any more. They wouldn't weigh him before and after feeds to see if he got enough. They based their entire rationale on whether or not he put on weight fast enough. They built the foundation of this argument on expectations of average sized children and he is not. He was having problems, but not the typical ones they were looking for. I hate medical staff who don't listen to parents.

This goes into one of those kidney-shaped emesis basins they give you in the hospital. I'll seal it in a zip-loc bag and airmail it back to the docs.

Can I keep him?

He stayed a month in the NICU. I was with him as much as they let me be. Every night I'd drive home and sleep for a few hours. Leaving the hospital empty handed is a mindfuck. I used to wake up in the morning, unsure of what had happened. Did I have a baby? Was he ok or did he die? Did I kill him by not being strong enough?

When he was 29 days old, they set us up in a private room. With discharge imminent, they let me unhook him from all the crap and just hold my baby. I laid him down on the bed and unwrapped his blanket so I could see him.

You know how, right after birth, everyone gives the baby a once-over and sort of counts toes or whatever? I just never got a chance to see him without wires and tubes coming out of everywhere. He was so tiny and beautiful...little pink toes and curled fists. And hair. Lots of hair. The boy is a wolfman;-)

I wish he'd only been in the hospital for a day or so. I wish we had normal birth with nobody almost dying or anything. I wish the OB didn't have to butcher me to get him out. I am still pissed that we had to go through that. I know things could have been worse, but still...IT SUCKS! I HATE IT! I WANT TO GO BACK IN TIME AND CHANGE IT!( repeatedly stomps foot and shakes fist at heavens. )

This goes into the 60's era leather satchel I carried when he was born. It will protect it in case I need to take it out again.

The Dwarf Lady

When he was two weeks old, still stationed in the NICU, a lady came for a very important sit-down with us. My husband had to work everyday. He'd come to the hospital in the morning, before work, at lunch time, and then stay for a long time after work. He felt like it wasn't enough time to spend with his son. This woman consumed nearly his entire lunchbreak pussyfooting around the issue where they thought our son had achondroplastic dwarfism.

She kept talking about persons of short stature this and little people that and finally my husband blurted out, "Are you trying to tell me that my son is going to be short or that he's a dwarf? Either way is ok by me, I'm just happy he's alive. My wife and I are "people of short stature". We never thought he'd be a basketball player, coming from our gene pool and all. So just say what you're trying to say and let me go visit with my son"

After she picked her jaw up off the floor, what do you think the next words out of her mouth were?? Not sorry or anything like that. She then proceeded to tell us that yes, our son was indeed a dwarf and by the way, it's really hard to raise a dwarf and it would probably ruin our marriage so if we decided to discretely adopt him out, no one would think less of us. Really. It's ok, just ditch your genetic malfunction and pretend like nothing happened.

After we picked our jaws up off the floor, my husband shouted, "Have you even seen my boy? Don't say another word until you've seen him because he's the most beautiful kid you'll ever lay eyes on!" And I, outraged beyond belief asked her if she knew what we just went through to have this perfect baby.

It pisses me off that they will send morons like this to talk to new parents about what's different about their kid. This was only 8 years ago and I live in California where they should know better.

This is going into a conservative & tasteful handbag, lovingly nestled in a crap-filled burlap sack, and gently placed on that woman's front porch where it is rigged to erupt in flames when she opens the door. May her porch smell of dogshit all summer long.

Warning: birthstory

After a week in the hospital, during which time I lost any semblance of modesty and all my peeing in the toilet privileges, they restarted my labor and presented me with a complete moron of a doctor. "Hello, my name is Dr. Harriet Dahmer", she chirped, "I'll be your butcher for the day! Enjoy your birth experience!" First of all, whoever invented natural childbirth is an evil bastard. And whose idea was it to make women the sole bearers of offspring? Why couldn't we trade off?

Labor was relatively short, though hideously intense. Why the doc didn't opt for a C-section is still a mystery (read: she defines incompetent). The cord was wrapped twice around our baby's neck, strangling him throughout the delivery. Um...really not cool. At the beginning of the pushing part, my mom said "You've got to get that baby out now or he's not going to make it!"Um...great, I'll kill my son before I even get to see him. What if I can't do it? Six pushes and about a gazillion stitches later, E was born, resuscitated and promptly whisked away by the huge team of Neonatal Intensive Care people who barged into the room right when it looked like the baby wouldn't make it.

They took him to a corner of the room and he made no noise. No whisper, no whimper, no tiny gasp of first breath. Then, my husband said tearily, "wait...he squeaked! He's not dead". They wheeled him half out of the room and then belatedly asked me if I wanted to see what my son looked like.

He was beautiful and too small and so fragile. I wish his birth was less of a dying experience but I'm so grateful he made it. I feel guilty for being sad about it.

This goes in one of those plastic patient belonging bags they give you at the hospital. I don't know why it's so hard to put away.

Hello you...

Two months before our little alien was due to claw its way out of my belly, my water broke. Oh crap, I thought, this is not *a good thing*. Then it occurred to me, waaaaait a minute, I get my ribs back early...very good! So, feeling much better, I puttered about, got a bag ready and then we called the midwife. "Oh nooo", she told my husband, "No_no_no_no_no! You do not pass go, do not collect $200, and you absolutely do not get to have that whole natural childbirthapalooza thing you had planned! Get ye straight away to the hospital and commence with the white coats!"

I still sometimes feel cheated that when I had my son, the doctor didn't triumphantly place him on my chest so I could gaze at him in all his not_in_my_tumminess. I used to think I'd have another and the feeling would go away. Now we'll probably not choose to have more and I've decided to live with it.

This goes in a blue diaper bag with tiny little skater guys on it. I think I'm ready to say goodbye.

Pieces of me

Feeling like a rebel today, so I'll forgo the jump and cut style of cinematography so popular now and just start from the beginning and stop when I get to the end. If you have some baggage you'd like to check, feel free. If there's enough people sharing, I'll open up a FreeForAllFriday blogfest.

I used to be untouchable. I used to walk on water. I was semper, baby-- hard for the Guard, a full on search and rescue dawg! I was a diesel mechanic and a fire fighter. I rescued Navy Seals for chrissake! Then, I got pregnant and WTF?? became mortal. Let me tell you, it's a little hard to transition from surf rescue god to keeper of the tit and wiper of the butt.

No matter how much time has passed, I still feel like I'm slacking off when I'm not out on the water, making everything safe for the Seals and all. Sometimes I wonder what it would have been like if I'd stayed in, not started the whole mommy thing...then he trundles over and gives me a hug and I can't quite remember what I was blue about.

This goes carefully into my sea bag, along with my medals, ribbons, rank patches, and commendations. I'll probably take it out from time to time, just to remember when I could save the world.

leaving on a jet plane

I just can't carry this crap around with me anymore. When I began that living hell otherwise known as boot camp (US Coast Guard--2nd hardest after the Marines), they issued us huge green duffle bags. For two grueling weeks we carried all of our worldly belongings, ninja turtle style, on our backs. The first time I tried to lift that sucker, nothing happened. It was probably 80% of my body weight and damn near as tall as me. I had to sit on the floor, wiggle my arms through the shoulder straps, and pull my self up --hand over hand-- using our bunk beds. 8 weeks later and I was throwing that bag around like it was nothing.

I guess you can get used to anything. For the past 8 years, I've been accumulating some serious baggage. I've just packed it up and kept on marching. Well, I'm done. I'm taking leave because this sucks and not in a good way.

I'm going on vacation and I'd love to get there with just my carry-on. Really. You, there, the shifty eyed fellow with the vicious halitosis--please, rifle through this luggage and take whatever you want. Fear, guilt, stress...take the whole damn lot.