Mombie...

It's like a mom, but a bit more zombified.

It's amazing how little sleep you can live on when you're a new mom, and an insomniac...

When I do finally have an opportunity to sleep (like right now, as my tiny person has been asleep for 5 whole hours in a row!) I am so horribly wide awake, and with the whole EDS/epinephrine thing, I couldn't sleep right now unless there was an elephant tranquilizer involved...

So, my sweet little not-gaining-weight-fast-enough person has now gotten over that... She sucks down no less than 10 ounces of formula per day (mostly when mommy's sleeping, and daddy is watching her {such a good hubby I have}) as well as all the boobs she wants (which is a lot... Boobs are Awesome).

She is hitting all of her milestones earlier than the books say "most babies should be able to." This includes being able to roll from her tummy to her back, on a soft surface like the bed, since she was a week old. Rolling on the floor took a couple more weeks, and I've now seen her roll both directions from her tummy.

The Nurse Bully from last post turned out to be worse than I thought. She called my doctor, and tried to convince him that I was a bad mother, too. She called him twice, complaining about me. He told me about it at the last visit, and said that he isn't at all concerned about the things she was complaining about, and he could completely understand why I told her never to call me again (which is one of the things she complained about, as apparently nurses are supposed to keep in touch with new mothers on a weekly basis for some reason).

...

Did you know... That babies are the best comedians?

They are the most hilarious people in the world.

My tiny person has 1001 faces, and most of them make me laugh. Some of them look like grumpy old man faces, and some of them are serious faces, and there's a plethora of different happy faces. Then there's the hungry face, and the sleepy face, and the full face.

She also has the funniest farts (you'd think the house is full of obnoxious teenage boys by the sound of it). Seriously, they've turned my husband into a five year old again, as often as he's laughing at them. And all the squirming and grunting she does when she's got gas is cute.

Then there's the sleep-smiling, and the eye-crossing, and the million and one other things that you just don't know babies do until you have one of your own.

...

Being a parent is a funny thing. I want my baby to "hurry up, and slow down." I can't wait for the next milestone to be hit, but I don't ever want her to grow up. She's perfectly perfect the way she is.

Bullied By Nurses

My baby, who was born at 7lbs 11oz, and is 19 days old today, has not returned to her birth weight, after losing over 10% within the first couple days of life.

She eats, she sleeps, she pees, and she poops. Frequently.

She has quiet alert periods.

She has an extremely strong cry.

All of the signs point to the fact that she is doing well, except for her lack of weight gain.

The nurses we have spoken to, and seen several times now, all kept telling us that she needs to put on weight faster, and I need to supplement my breast milk with formula, because she's "not getting enough milk."

They're telling me that I'm starving my baby.

After an appointment with the nurse, at which we took another weight measurement, which was under the birth weight, and another lecture about adding formula, and another lecture about breast pumps, and the need for getting more milk into my baby, we were told to take her to the children's hospital emergency department for an assessment.

Up until this point, I, the mother of this perfect little baby, was not concerned.

But now they tell me to go to Emergency? As in, the place you go when there's an immediately life-threatening event occurring???

Now I'm a bit concerned.

After subjecting my little lady to the indecency of an I.V. in her little tiny hand, and a blood draw, and pokes and prods, and rectal thermometers, and nurses, and doctors, and tests, and bright lights... Guess what they found?

My perfect little lady is healthy. She's perfectly perfect, except for the lack of sufficient weight gain.

Aside from further, frequent, weigh-ins to check her progress, we need no further intervention at this time.

Now, you know what I want to do?

I want to yell at all the people who made me feel two feet tall, all the people who made me feel like I was starving my baby, all the people who tried to tell me I was a bad mother (without ever saying those words). I want to tell them all to piss off, and leave us alone, because we're bloody well fine, dammit.

Mother's instincts told me I was doing well, they were right (I WAS RIGHT). But I was bullied into tests, and I was bullied into feeding formula to my baby.

Beautiful Baby Girl

I had my baby! And she's perfectly perfect! 10 long fingers, 10 long toes, cute button nose, and the lungs of an opera singer.

When I got to the operating room, they sat me on the table, and got me full of I.V.'s, and set up for the epidural. I had a nurse standing in front of me, asking me questions, and holding my hands. I'm assuming it was her job at this point to keep me calm. After a few minutes of getting everyone set up, the anaesthesiologist came over and said "Take a deep breath. I'm going to insert the needle in 3... 2... 1..."  *poke* At this, I winced ever so slightly, and continued my conversation with the nurse in front of me. She looks at me (with a surprised-almost shocked- look on her face), and says "You have an extremely high pain tolerance." So after a minute for the freezing to take minimal effect, he jabs me with the other needle, and it's totally off-center. I can feel that it's off-center, and after a couple seconds of jiggling, he says we'll have to try again. Second stick was off-center the other direction, but in an acceptable position, so they got me to lay down.

At this point, they start loading me up with drugs, and poking me, and pinching me, and asking what I can feel. It soon became apparent that I was only freezing on my left side, so they tilted me to the right, and injected more drugs, and poked and pinched some more. After what felt like an eternity, everything that needed to be frozen was frozen, and they sliced me open.

During the delivery portion of the event, they have to push the baby down from the outside... Which feels kind of like having an elephant sit on your chest. there's some tugging sensations, some weird pressure sensations, and "It's a girl!" followed by the most beautiful cry I've ever heard. Then exclamations of "She's already pooping... And peeing! All over the floor!" Then they take her to the incubator for measurements, a needle, and some eye goop (which took 2 doctors to administer, because my little lady was very stubborn from the get-go).

They used dissolving sutures (apparently I'm allergic to staples, as well as them being a bad idea for EDSers), and used more of them than normal people would require, commenting that my skin was thin and stretchy. Aside from a bit of puckering, the skin seems to be healing quite well, and the incision is almost invisible, just a pink line, with one little scab left.

While they were stitching me up, I felt odd tugging sensations in my pelvic region, and it also felt like someone was pulling on my lowest right rib... I commented on this, and someone promptly went about massaging, and manhandling the rib back into place.

After this point, details are a bit fuzzy, as I was pretty drugged for the first day, and since then I have been running on extremely little sleep.

They kept us in the hospital for 4 days. First they said she was good to go, but I needed more time for my incision to heal, then I was good to go, and she had lost over 10% of her body weight, so we had to stick around until she'd started gaining again.

Then I had a couple of nurses report me for a "less than happy" mood, which was followed by the pediatrician accusing me of being schizophrenic, and ordering a psych consult (fun, right?).

The psych consult was just about the best experience I've ever had dealing with mental health professionals, as well as being the most comfortable I'd felt since being in there. She told me I was perfectly fine, and that the extreme tiredness, combined with the stress of having a newborn, and the doctors, nurses, and other staff coming and going at all hours of the day and night (and the wonderful construction going on directly above my room), was perfectly natural. She said I was coping as well as could be expected, and gave me a clean bill of health. It was gratifying. I'm used to doctors calling me different types of crazy for different reasons... But being told I'm perfectly healthy (emotionally) by a trained mental health professional has never happened before.

As soon as we got home (me, baby, hubby, and my mom for support) everything was so much better. I wasn't stressed. I wasn't anxious. It turns out I didn't even need my mom for anything, except company, and I had things well under control.

We've already had our first doctor's appointment, with a new doctor, as mine has moved, and he was a jerk, so I opted to see one of the other doctors who was taking patients, and so far he seems to be a good doctor, and a good listener.

I've dislocated my pelvis again, as well as most of my left ribs, shoulder, tailbone, collar bone, etc. But I seem to be doing pretty well, as I can hold my baby for extended periods of time, with significantly less pain than I was expecting.

I think that's about all the important stuff...

I hope everyone is doing well!

Half a Diagnosis

I saw the Cardiologist on Friday. She was wonderful. She took all my complaints seriously, and we had some pretty good conversation.

She told me I have either Vasovagal Syncope or POTS, and that since the treatment for both is the same, there's no point looking for the actual diagnosis.

The treatment is salt, fluids, and compression socks. So, basically, keep doing what I've been doing, and buy some compression socks.

Apparently beta blockers are no longer being used in the treatment of POTS, as doctors are finding we need higher and higher doses, and once we're taking beta blockers, we can never stop taking them.

10 more days until baby comes!

I'm excited! And nervous!

And tired.

I can't sleep in any position for more than about 20 minutes. I wake up 47 times per night with dislocations, and because I have to pee. I also have some pretty horrendous lower back pain. Hopefully, once the baby's out, the pain, and dislocations will go back to their previous levels.

Cardiologist!

Apparently, a resting heart rate of 130bpm followed a few days later by a blood pressure of 149/98 is enough to get me in to see a cardiologist next Friday.

This was the first time I was immediately ushered into the room where they check your blood pressure, after walking in from my car, instead of having to sit in the waiting room for 15-45 minutes. So I'm thinking that had something to do with my blood pressure. After sitting down for 5 minutes, it went down to 138/89, and my heart rate dropped to 108. This is the first time I can remember having abnormally high blood pressure. It's usually on the low side of normal.

They're going to set me up with a 24hr Holter Monitor, hopefully before I see the Cardiologist, so she can look over the results.

After being on a waiting list for a cardiologist for over 2 years (and who says Canada has great Health Care?) I'm finally going to see one, and only because I'm pregnant.

Anesthesiologist Consult

I saw a really cute doctor today!

And he was really smart, too!

Gotta love it when that happens, eh?

I went into my consult expecting to spew out all of the EDS-relevant facts, figures, and information I've found through years of research, and talking to other EDSers. And guess what? I didn't need to tell him anything!

Not a single thing!

All of my little tidbits were already in his pretty little head (seriously, the guy was gorgeous). I was pleasantly surprised.

He went over the 3 different ways of anesthetizing someone for a c-section, and all of the inherent risks/benefits for otherwise healthy people, as well as the EDS-specific risks/benefits, as well as the POTS-specific risks/benefits, and the EDS & POTS-specific risks/benefits.

As I said, very well versed!

He performed a poor-man's tilt-table-test on me (lay down for 10 minutes, check blood pressure and heart rate, then stand up quickly, and re-check blood pressure and heart rate... Keep standing until a specific interval has passed with heart rate not going back to normal), and he agrees that I most likely do have POTS, even though it effects my heart rate much more noticeably than my blood pressure.

It seems that the most likely way they'll anesthetize me, is with an epidural. This way they can more safely leave a catheter in my spine, and push more medication as necessary. With the POTS, they would also slowly work up to the dose, to avoid blood pressures and heart rates going wonky. He was worried that having a spinal block, which is a one-shot deal, could become problematic if the anesthetic wears off too quickly. It's also easier on mom, and baby if it's done under a regional anesthetic, as opposed to a general.

The baby date is getting closer, and I'm getting nervous!

Bad Night

Last night was horrible.

I had to get up to pee 3 times, even though I quit drinking anything long before I went to bed, and made sure to pee right before bed... My bladder is a punching bag, apparently, and a trampoline, and it's frustrating.

Also, last night I had the misfortune of dislocating my hips, shoulders and ribs multiple times. I was unable to lay on my back, as it was hard to breathe, and I had to switch from my right side to my left side, and back again, about every 15 or 20 minutes, as I dislocated the shoulder and hip I was laying on.

My tiny little Tummy Monster is also beating relentlessly on my sciatic nerves, causing searing lightning-bolt pain, and numbness in my legs. And she's got herself wedged into my pelvis in such a way that my stupid pubic symphysis is separated almost constantly. Same goes for my stupid tailbone, on both sides. And my stupid SI joints. Basically, it feels like my pelvis is jello. Painful, painful jello.

All this to say, I got no more than an hour of sleep last night - total. I'm fairly sure I'm capable of functioning with little to no sleep, as it's been the norm for me due to insomnia for the past umpteen years, but I really would like to be able sleep sometimes.

I've reached the point in my pregnancy where putting on socks and shoes is extremely uncomfortable. So is just about everything else. I've only got 4 or 5 more weeks, though, before she's on the outside, and I'll have my body to myself again (don't laugh, I know she'll be pretty much attached to me still).

Oh, and as if I hadn't enough to deal with... I'm twitching like a crazy person again.

Odd Moments

Today would have been my father's 52nd birthday.

Would have been.

If he hadn't died ,unceremoniously, without warning, and for no apparent reason, 6 years, and 3 months ago.

So, for the past 6 years, and 3 months, I have been having a dream. It's got different details, but the broad strokes are always the same:

He shows up, unannounced, and says "I'm sorry I faked my death, can you ever forgive me?"

Usually, at this point, I either hug him, and start crying, or I punch him in the nose, and scream at him (and then hug him and start crying).

The frustrating thing is, though, that the dream will continue, and I will spend a week or more catching up with my dad, telling him about all the horrible things that have happened since he died, and feeling like I might be able to forgive him for leaving, because his reasons (though never the same) were good enough.

Every time I have this dream, I wake up expecting it to have been real. I wake up expecting my dad to be alive. I wake up, and reach for my phone to call him.

Then the dream shatters, and reality comes crashing down. And I have to live through his death all over again.

Pregnancy hormones cause dreams to be much more vivid.

It sucks.

Not only do I miss my dad, and feel bad that he's never going to meet his granddaughter while I'm awake; I also spend time with my dad, being excited about the baby, and even having some dreams where I can see the two of them playing together, which I have to wake up from.

Happy Birthday, Dad. I miss you.

No News is Good News

I have my third ultrasound scheduled for tomorrow. I'm pretty excited to see my little Monster's face again!

As of last week (at 31.5 weeks gestation) I had gained a whole 8.5lbs from my pre-pregnancy weight. Nobody seems concerned that this is too little at this point, so I'll keep doing what I've been doing (which is eating lots, and lots, and lots of fruits-as well as pretty much anything else that comes close enough to my mouth to be devoured...).

I've found that Tums, and a glass of milk about an hour before bed keeps the reflux/heartburn at bay overnight (and it helps me get my Calcium). Yay!

I still can't sleep much. Getting a few hours a night, between EMERGENCY PEE RUNS. It's crazy... I'm laying there, with no notion that I've got anything in my bladder, then suddenly my bladder is kicked, punched, or head-butted, and it feels like I won't have time to make it to the bathroom. Add to that the part where sitting up to get out of bed requires some of the same muscles as peeing, and I'm surprised I haven't wet the bed.

My pelvis is still loose, and dislocatey. My shoulder is still ridiculously loose, and unstable. My arm randomly goes numb, or tingly from either nerves or blood flow suddenly getting smushed.

I went to the optometrist last week, because my vision has been time-to-get-new-glasses fuzzy. I've been wearing glasses for 20 years, so I know when fuzzy is fuzzy enough to require a new prescription. But apparently, I'm totally bonkers, as my vision was 20/20 when he checked it on Thursday, and the only reasonable explanation is that the oils, and other liquids on my eye are not properly balanced, causing fuzziness (which apparently goes away if I blink 47 times in a row).

Where'd my toes go?

I have to lean over a bit to see my toes now. If I don't lean, all I see is boobs and belly.

I'm waddling quite nicely now. Somewhere between a duck waddle, and a Quasimodo waddle-shuffle, depending on how much/which things hurt.

I've got some lower back pain from my tummy throwing me off-balance, and I have to stand, and rock myself back and forth to fix things. It's amazing how many things are fixed by rocking... Lower back pain, dislocated tailbone, dislocated pelvis, constipation, gas pain, and restless baby... Gently rocking for a few minutes gets everything back to where it should be, and convinces my little monster that my ribcage should not be her hideout.

On another note, I'd like to find the person who smuggled steel-toed boots, a pointy helmet, and a sledgehammer into my womb. Okay, not quite, but it's amazing how strong she is in there.

I'm getting a shiny new car this week, because my current car is crap, and I don't think I'd feel safe having a baby in it.

I think my appointment with the High Risk Pregnancy clinic next week is finally going to get me an OB/GYN. Amazingly, at 6 1/2 months, I still don't have one.

My appointment last week with the Chronic Illness & Pregnancy clinic was interesting. For 2 hours I had a nurse, an intern, and a doctor asking me question upon question, and writing notes.

Weird part, though, is that they knew enough about EDS that they told me, "we're not concerned, because you don't have the vascular type." Which is great, they know that Type IV is the most problematic when it comes to pregnancy complications, and such... But don't sit there and tell me that I'm going to be fine, especially after I've detailed the extreme dislocations, the extreme pain, and the scary-as-hell near-syncope events I had all through my first trimester, coupled with the ever-looming possibility that this pregnancy may end with me in a wheelchair. Telling me that "at least it's not type IV" doesn't earn you any brownie points. It doesn't make me feel better.

Oh well. At least they knew some things.

Tummy Monster is Kicking My Butt

So, I just passed the 6 month milestone in my pregnancy. I also finally got back to my pre-pregnancy weight, after losing 20 pounds in my first trimester.

My pelvis now dislocates in up to 4 places simultaneously.

My intestines seem to be doing their job again, since I started eating a lot more fruit.

The tiny little person I'm growing can stretch to amazing lengths already, poking me in the ribs on both sides, as well as just above both hip bones, at the same time. It really is one of the strangest sensations I've ever experienced.

I am exhausted, all the time. I still can't get much sleep, but I am getting some.

My geneticist has referred me to 2 different high risk pregnancy centres, and I'm still waiting to hear back from them about an appointment.

I saw my chiropractor yesterday, about the 4 wobbly bits in my pelvis, and he adjusted them (which really hurt) and they felt so much better afterward, for about an hour and a half. I had to break out my cane. He also gave me the number for a place in town that sells braces, and told me to see if they have any pelvic braces to help stabilize me.

Also, my husband spoke to my prolotherapy doctor, and he seems to think we'll have to wait 3-6 months after baby is born to start prolotherapy again. I am really distressed by this, as I can barely walk for 10 minutes now, and I seem to be getting worse almost daily. Once I know his reasons for waiting that long, I'm either going to try to convince him he's wrong (if I think he is), or try to convince him to do it a different way, if it's the drugs/breastmilk he's worried about.