How Do They Know?

They told me it would "happen over night". Well, apparently last night was the one.

Until now Riley "crawled" mostly by accident for a second or two. Recently, she'd crawl a little bit to get a little closer to something nearby to pull herself up, but she perfered to roll and scoot to cross rooms. Until today.

Of course, I'm having major surgery tomorrow and will be pretty immobile for a while and my darling daughter has decided to pick up the slack. She was playing in her room on the floor and I was in my room cleaning up my desk. I looked up to see her crawling out or her room with complete singleness of purpose. She went right into the bathroom and grabbed the garbage can. I grabbed her, closed the bathroom door and gated her so she could go only between her bedroom and mine.

What timing kiddo!

The Storm Before The Storm

Yup, it's the "before" surgery days, but there seems to be nothing calm about it.

I got a call yesterday evening that the doctor needed me to go for another CT scan this morning so he could get a more accurate set of measurements for the hardware he'll put putting in m back. I slept horribly last night because the of pain and missed picking my sister up from the airport because her flight was delayed and she got in at 2am. Somehow even with jet lag my sister accompanied me to the test. It was over in 10min and then we sat for 45min with an increasingly tired baby (and Mommy) waiting for the films. When they were finally ready we rushed them over to the ortho's office and then breathed what turned out to be a premature sigh of relief.

Four hours later I get a call from the Ortho. Apparently the CT tech misread the script and took the wrong films. They made me a new appointment to redo it Monday morning! I was already supposed to at the hospital at 6am to get admitted, blood drawn and a baseline for the nerve monitors before surgery at 12:30. Now we're squeezing in a CT scan at 8:00. Not only am I frazzled just thinking about it, but it makes me uncomfortable knowing the surgeon is getting this information only s few hours before the surgery. Most of all I'm angry at the complete waste of my time!

Just Like That

The wait is over.

I am scheduled and registered for surgery Monday. It's really happening.

I have made a list to calm the annoying feeling that I will completely forget something that left undone may be the catalyst for the apocolypse or some such awefulness. But other than the nagging feeling that I must be forgetting something I just feel relief. I can't wait for it to be over.

More Newsie News

I did my pre-op teaching for the spinal fusion surgery today. Mostly it was fascinating, but it all made me feel very helpless. I just want to be able to see and feed my baby. I've dealt with surgery, pain, recovery and hospitalization before I'll do it again. I just want access to my baby.

They changed the floor I'll be staying on from Orthopedic to Med/Surg which is a mish mosh of post op patients and sickies. This freaks me out as far as the baby's concerned. Also, there's a small chance of ending up in the ICU right after surgery, which would mean no access to Riley. The average hospital stay is a little longer for this one about 5 days instead of 3. The physician's assistant also seems to think the post op Morphine pain pump and antibiotics mean no breast feeding (even though I had both with the C-Section).

I called the lactation consultant right away and told her I was feeling overwhelmed and discouraged from breastfeeding. She is on the case (God bless her!). She's going to chat with the manager of the Med/Surg floor about a private room, fax proof that the Morphine and antibiotics are ok and in general chat with the Ortho's office on my behalf. "Go ahead and stop freaking out. Let me be your advocate." She said.

On the plus side we do not have to wait for full bone fusion to occur (roughly 3-4mo) to proceed with the hip replacement. Also, no blood thinners for this one, HURRAY. I'm sure you all remember how much I hate needles. However, since it has been over a month since I did my original pre-op labwork they have to draw blood again...Sigh.

Overall, aside from a 2+hr wait to hear all this**, repeat blood draw and the fact that the awesome picture of the model spinal rod did not save properly on my phone, everything seems to be moving in the right direction. Now everyone cross your fingers for no more delays!

**Also, many thanks to Lara for putting up with our impromtu 3hr Ortho adventure today!!

Sisyphus

I wonder if Sisyphus ever contemplated laying down and letting the damn rock roll over him. Every time I think it's over...

So, I went for my pre-op teaching appt at 1:00 the doctor was in a trauma surgery. Because we can't do the appt today and get the appropriate paper work my surgery can't be approved for Thursday.

She put me on the schedule for next Thursday and apologized. I burst into tears and in a impressive feet of insensitivity Mike looked at my tear stained face and said "but we knew it might not be Thursday. Why are you so upset?!?" Nice. I tried to explain that an appropriate reaction would be "That sucks. I'm sorry honey." And saving other commentary for when I'd calmed down. He responded to that but starting up again about how I was having the reaction he would have if we were sure about Thursday and it was changed. Um, WTF?!? Thank you for judging my reaction, making everything worse and totally ignoring what I just said.

I decided I needed to go somewhere and not talk about the surgery. I took Riley to see her buddy Jack and we all ended up seeing Babies. It was really cute and for anyone else with a baby Tuesday early evenings are a great time to see a movie. Riley and Jack were totally into it. Their first date.

What's in a Name?

It's so funny to think about it over a year later, but deciding what to call another human being is a daunting task. I pondered names long and hard. I took a baby name book from the library at one point and wrote this list:

*Serenity
Huyana(falling rain)
Liadah
Kiernan(Irish saint)
Gwendolyn (blessed ring/fair browed)
Jessalyn
Ophelia
Penelope(weaver)
Repunzil
Saige(knowing, wise)
Saddie(princess)
Tatum (be cheerful)
Trella(little star)
Ilianora
*this list was never approved by Mike or even for the most part anything I was seriously considering

Let me just say that in my experience the name discussion is definitely one where you're gonna disagree more than you agree. When we first started dating we decided if we had a baby "someday" we should have a top 3 for each sex. We loved Serenity for a girl, it was a done deal for our hypothetical daughter. For a boy we liked Simon Oliver, Maverick, or our third choice completely escapes me now.

As soon as I got pregnant I suddenly hated Serenity. I just knew that wasn't who was in there. Just as suddenly Mike found ourselves in whole hearted agreement on Maverick for a boy. We focused our efforts on girl names. I had dreamt about my "fairy baby" so we tried to come up with uncommon names with an ethereal feel. When we had narrowed it down a bit we posted a list for friends and family to vote on.

Maverick Steele or Maverick Stone (Mav for short)Meaning Fiercely independent

Riley Grey or Riley Eris Meaning-Space in a rye field/courageous woman
Jessalyn Eris (Jess for short)Meaning-Woman of wealth
Aerilynn Sapphyre (Air A Lyn)Meaning-Beautiful air
Serenity Wysteria or Serenity Wyllow (Ren for short)Meaning-Calm/tranquil
Violet Eris or Violet Moss

By the time we entered the OR having long since decided on and abandoned Maverick Steele for the boy who wasn't to be. We had narrowed our girl choices:
Riley, Jessalyn or Violet

She came out and gave the NICU team a run for their money. They kept laughed and applauded her good weight and healthy lungs. One nurse called over "you got a feisty one here mama!" I said "Michael, you know what we have to name her." She named herself really.

Now after all the stress, worry and arguing I look at her and I can't imagine her with any other name.

Newie News News

When we took the first set of scoloisis films there was an increase from 5 degrees to 13.9. I thought ordering another set 2months apart seemed like a waste. I thought he was just sending me for more tests to stall.

Wrong again, me. My back is worse. It's within the minium required curve for surgery now. Oh, well my back hurts and supposidly this surgery will make it stop or at least hurt less. But of course it's not that simple. Apparently he spoke to soon promising me we'd keep the same date no matter which surgery we're doing. It has to autherized because it's a different surgery.

And when, you ask, will I know whether I'm having surgery this Thursday morning? Wednesday evening. Freaking perfect....

Containment

So, I'm showing my age here, but when I think about baby containment I think of Rugrats. I wanted to get Riley the same style enclosure for our house. Something versatile that we could completely do without, use inside or outside and set up various configurations. I knew it was time to think about baby gates with my impending surgery, but the other day she crawled across the floor and opened a drawer. She hadn't intended to open it at all she want to pull herself up to standing and...it opened. She was thrilled! She sat there smiling and opening and closing the drawer for 10min. Thunk...ha!...thunk...squeal...thunk...hee...thunk

Time for a baby gate.

So my BabyRUS coupons had the good sense to arrive that day offering 15% of baby gates, 50% off the extension to the gate I wanted and 20% any baby item. I thought perfect I'll just order it online with all the discounts. I'm not driving very much at the moment and those things are very heavy. It was a complicated mind numbing ordeal trying to use my coupons on line. Apparently, when the website says maximum of 3 discounts per order they don't mean use can use 3 different discounts on multiple items like I was trying to do. They mean you can get the same item with the same exact discount discount 3 times. Anyone else think that's completely stupid?

So, armed with customer services' assurances that you can only stack coupons in store I decided to enlist help and pick it up in person. I'd also like to say in my defense that the flyer with the coupons specifically said "price with discount and coupon." I'm sorry to harp on all this but people who make my life more difficult really piss me off lately.

On the plus side the Super Yard comes fully assembled. I had read my friend's blog about her baby gate assembly requiring a screw driver so I was weary. Not that I'm not capable just too

tired to concentrate. So, we put it up not so much in the officially sanctioned hexagon shape, but more of a screwed up triangle.

Riley liked the novelty of it at first. She could pull herself up on it and cruise around in there. It's really sturdy unlike the empty clothes hamper she pulled down on herself trying to stand up the other day. But the honeymoon was over pretty quickly. I like that the mess is contained (aka I won't trip over it) and the baby's safe from speeding 7yr olds.

It has a "door" which requires some serious coordination to open, up on one side down on the other at the same time. We decided to actually open it as little as possible to deter Isaac from trying to get in there. So, for now I have to entice the baby to stand and then pull her out. I was advised to find a way to contain the baby before my surgery and to consult an occupational therapist before I'm discharged from the hospital so I can figure out the best way to lift the baby without derailing my healing. I'm not super optimistic about it after two days of scooping her out of her pen.

It's just another example of God's sense of humor like the baby finally rolling around and needing the crib bumpers at the same time she figures out grabbing so she can promptly rip them down. Riley because mobile enough to need containment which means she minds being contained for the first time in her life. I guess she'll be more content when we round of her little gang of babies and they can escape on fun adventures and make it back just in time for the adults to never susept..

Organizing and Socializing

I have always been a very organized, but since the baby I am less so. I recently discovered I'd written 10:30am on a day in my planner with no further description. I searched everywhere for some clue, but resigned myself to hoping there would be a call confirming whatever it was. It really could have been anything because I write everyone's appointments in there.

Today a letter came informing me Isaac had missed his appt on May 7th and been rescheduled for June 2nd. Oh, well...At this point I even have the cat's vet appointment in there and the world is pretty overwhelming.

In order to make the world less so I recruited some help to re-organize the nursery. We rotated out all the clothes that no longer fit with some larger ones. We collected the no longer used items like the baby swing and loaded them into the car for consignment or donation. It was really nice to have things back in order before my surgery.

More than a tidy room and more space to move around without extraneous baby gear it was so nice to have company. I really enjoyed having friends over while Riley had a friend over. It felt like I was human again. Also, I things it's good for this house to get a good dose of estrogen now and then.

Seriously?!?

The doctor asked to see me today. I was understandably worried I even got Mike to come for moral support. I can't tell you that I was under any delusion that every would be wonderful, but it was definitely a surprise.

Many posts (and weeks ago) I was informed that the worst case scenario surgically was that I needed a spinal fusion surgery and then both hips replaced. I understood this logic because it made sense as far as my pain. After some special x-rays the ortho decided the curvature was not actually severe enough for back surgery so we would proceed with a hip relacement. I was afraid this wouldn't eliminate the majority of my pain, but the doctor seemed to think it was the way to go.

We scheduled my hip replacement (twice) and then he called me in to say he's worried if we replace my hip without correcting my back and my back gets worse it'll throw everything out of whack and he won't be able to fix it. That extra stability would make everything more level to start with.

Surprise, surprise...he sent me for another test. If my scoliosis is progressing than next Thursday we'll fuse my spine if it looks solid we'll do the hip. If we start with the back surgery I will have to have my hip done in 3mo. So much for being done will all of it before Riley's walking.

I feel like my brain has blown a fuse.

Mother's Day Comedy

Please note Riley's shirt says "My Mom's the Best. Mother's Day 2010"

I'd like to thank Isaac for cheering things up a bit around this blog...

Last year I was pregnant and on bed rest on Mother's Day. Isaac (with Daddy's supervision) made me breakfast in bed. He was very excited and plopped the tray including a mug of tea and vase of flowers down a little to enthusiastically as a result I was sitting in a sizable pool of cold water. I remember perching on the only dry patch of bed picking at my cold breakfast while Isaac cried in the next room.

So, this year I said maybe I should just eat breakfast at the table. Isaac brought me the card he made at school first. It had a bouquet of brightly colored hands on popsicle sticks in a flower pot. Each hand had a way to help out on it such as "wash the baby" which was one of my favorites.

"Isaac, is this your hand?"

"No, my teacher made them."

"Oh, well did you at least pick these pretty colors?"

"No, those are the ones my teacher gave me."

"Oh. Well what are we doing next?"

"I don't know."

"I think you're dad might need your help with breakfast."

"Good idea, breakfast. Dad, what are we making?"-He's yelling from the bedroom

At which point Mike tells him to be quiet because he's only making it worse. Apparently humble to the core Isaac wanted none of the credit for the Mother's Day goings on.

His card also featured a poem he wrote:

"Rose as red. Violets are indigo. (under which he hastily scribbled or blue)

Happy Mother's Day.

I love you"

So, on the way to the grocery store Mike tired to help him rework the poem. He suggested:

"Roses are red, Violets are indigo

Moms are so sweet

They help their kids to grow."

To which Isaac replied "What?!? They aren't sweet!"

"They're not?"

"They don't help you grow."

"They don't."

"No, they help you die."

"What?!?"

"And go to hell. (brief pause) or heaven"

"You think moms help you die?"

"No, not moms. Bombs!"

In case you were wondering I did have breakfast in bed. The boys made be belgian waffles with peaches. They were amazing. Isaac brought my plate and Mike followed with my drink. (:

Sleepless Nights

I hate to even complain about sleep at this point because we had such a long stretch of good 8-10hr nights of sleep. I know not all babies do that as early as Riley did and that things change often with babies. I'm in alot of pain lately and it's effecting my sleep. It's hard to relax when you're in severe pain. Even writing about it my eyes are welling up with tears. The anxiety has my head spinning more than normal which is considerable since it's always like an industrial washing machine in there. So, Riley's teething picked a horrible time to come back with a vengence.

I feel like the mother of a newborn again. It's not as bad as was when she was born, but every 3-4hrs still sucks when you have trouble falling asleep in the first place. It was horrible she was screaming and crying last night and then we realized she had a monster diaper rash, the worst I'd ever seen. We put her in a bath, daddy walked her around and sang, we let it air out and coated it in diaper cream and she screamed through all of it. My poor baby.

Besides the fact that my baby screaming in pain breaks my heart it does nothing for my anxiety level. Long after she's quiet my brain refuses to be. I feel inadaqite as a mother. I feel like cuddling and entertaining her in bed all day isn't enough for her anymore. I want to be able to change her on the change table, let her nap in her crib, take her for walks or car rides. It seems the more mobile she's getting the less mobile I become.

I know I should be napping with her right now, but I'm just as stir crazy as she is. At this point blogging in the living room is a change of scenery. I love her so much and I dread not being able to be with her all day while I'm in the hospital, but my life quite literally revovles around her at this point because I'm not capable or anything else. I need things to change.

It's Not A Contest

So, whenever I go to the ortho I always over hear conversations in the waiting room that sound like this:

ACL?
Patella?
Yeah, 2 surgeries.
(shaking head) Me too. 3 surgeries.
Really? I have to have another one too.
Hurts like a @#$%^&* %^&*$
I can hardly move.
I had to stop driving.
...etc

Today someone tried to engage me in such a one-uping comparison of scars chat:

Morning.
Morning.
How long you been in that wheelchair?
On and off since birth.
Oh.
(Long Pause)

I hate those people. It occurred to me it was like a new money old/ money thing. When you've been dealing with orthopedic issues since birth you don't give a crap about their boo-boo that will heal in a month or two. I don't need to one up anyone with how many surgeries I've had (and I would certainly win that one) or the amount of pain I'm in. I don't need to wear my diagnosis on a t-shirt or get a badge of honor for not crawling in a hole to die. I'm not going to applaud your sports injury not ruining your life, sorry. Solicit pity from someone less knowledgeable.

There are always conversations with my mom friends about our pregnancy and labor experiences. Fascinating stuff. Inevitably there's one woman like those people in the ortho'swaiting room who wants to impress you with how many billions of hours of labor she endured or elicit sympathy for some circumstance or another.

I love my friends and I want to know what pregnancy and labor were like for them, but when it stops coming from a place of genuinely wanting to share your experiences with your friends and becomes some weird pissing contest count me out.

You're not going to shock me into thinking you deserve a prize. I've been through it. It's hard whether bed rest and the NICU are part of the equation or not. Besides what does validation from me do for you anyway? We've all got obstacles to overcome. If you want support or advise and your willing to let me cry on your shoulder too that's a different story.

Moving Backwards

It used to be that Riley was the reason I'd go 3 days without showering, but today I realized that the pain is the cause now. The pain is why I'm exhausted and smelly. I wish the pain would sleep through the night and play by itself.

Not long ago I posted about a typical week. I outlined all my running around, cooking, cleaning and corralling. Today my lawyer asked me to describe my typical day now. It was the most depressing thing ever to face the reality of what my life has become over the last few months. I was so distraught afterwards.

I rested, I asked for help, I expressed my fear (all the things I hate the most). I want my life back.

On the up side I tried the back carry position with my Ergo and I got some new blu rays. Also, tonight is Grey's Anatomy and I hired a cleaning lady so it wasn't a completely sad day. Tomorrow promises to be interesting, I see the ortho at 10am (Dun, dun, dun).

The Next Steps

I called the Ortho's office at 9am and was told that they thought it "would take less than the 3wks they originally thought" to build the hip. I'm sorry, but no one told me that was the timeline or that the company making the hip had called them at all! What the hell is wrong with these people? So, now she wants to call me back, again. I plan to check in every hour or so today until I know something.

It's been getting harder to move and this morning when Mike asked me to do something about all the noise the baby was making I had trouble carrying her to her room. After the surgery I'm told I won't be able to bend or in general be at less than a 90 degree angle. It's starting to freak me out. All I've been thinking about is the pain getting better, but I'm not going to walk out of surgery and run a marathon.

I interviewed some cleaning ladies and I'm hiring one today so that will help a lot. Next weekend we're getting Mike a nice roomy shed for all of his tools and computer stuff. It'll free up a lot of space, help the clearing the yard project and give him a place to go tinker that isn't the dining room table. We may also need to lose a piece of furniture so the wheelchair fits. We've agreed to be out of this house in Sept when the lease is up so that gives us 4mo (I can't believe my baby will be 1yr by then). Plus all of these steps make the house more Riley proof.

Also on getting ready for surgery note I discovered the Medela milk storage bags. I'd been using the same kind of containers they'd given me in the NICU until now. With the postponement I've been building up quite a stash and I ran out. The bags are neat because you can pump straight into them, toss them when your done and you get 50 for $20. I'm excited about not having to worry about sterilizing and re-using.

I wrote a whole post about this which Riley somehow deleted, but I wanted to mention don't give the baby pineapple. I let Riley try it Friday morning and she ended up with a horrible diaper rash. She was up once an hour that night and every 3 the next. It's only just today looking better, poor thing. So tired.

Rage

I continue to get jerked around...I have no date for my surgery, no relief from my pain, no more stamina for this.

I have been in some level of pain everyday for the last 7yrs. I have pushed through and refused to complain until my body literally wore out. I am miserable and uncomfortable to the extreme. I can't take anything because I'm breastfeeding and the only thing they can give me is the only drug I'm allergic to. I take Advil (just like I did every day for months after the bus hit me). Someday my kidneys will fail or my stomach lining will hemorrhage to thank me for all the ibuprofen. I don't want drugs I want relief.

I have done EVERYTHING that was asked of me and held myself to impossible standards. I have taken care of everyone else. I just want to know it's going to end. I would gladly give my legs to be released from this incessant pain.

This is why most people don't survive being hit by buses. I'm so done will this stupid body always falling apart on me. I can't go on indefinitely this way.

I know this will pass. Please don't misunderstand I haven't given up. I just needed to vent, I think I've earned one.