News

Ahhhh! So which do ya want first? The good news, the good news or the really good news? Because somehow, I am waking up on my 38th birthday to a shiny, sparkly feeling...

Birdie's tooth? She had just preempted the natural process. Despite the jagged appearance of the root of the tooth that "Link" escorted out... there was nothing hazardous left in the gums. No harm, no foul AND my dentist didn't even charge me for the visit or x-rays.

Yeah... I know! Don't you just hate people who ask for your advice, and then do whatever the crap they wanted to do anyway? In my defence, I really thought that there was a splinter of root left, and I only had yesterday morning to take care of it... so I just hit up my dentist for a morning mercy visit. The "not paying" bit was all their idea. I suspect they didn't want to mess with the paperwork for five minutes and two x-rays. Or it could be because his wife is the Relief Society President for our Ward... and she wanted to cut us a break. Then again, I shouldn't discount the fact that they are just cool people! One way or the other.... WOO HOOOO!

And I love her new jack-o-lantern grin, but it also breaks my heart a little.... she looks like a school kid now.

The reason I only had the morning to deal with busted teeth, we had an early afternoon appointment up in SLC with Pearl's surgeon. Best case scenario. The G-tube is gone. All we are left with now is scar tissue, one final appointment in three months, and one or two small complications. Some other time I'll explain the complications, but... this is my birthday post, and I am only chronicling the bright side thankyouverymuch!

She ain't got no g-tube la-la-be-doo-bah!

Also... I had forgotten the unreasonable pleasure that comes with welcoming a new niece or nephew into the family. I say unreasonable, because I feel proud. I obviously had nothing to do with the guy, but here he is... breathing and slightly smashed looking. And I feel so pleased and proud, like I helped. One way or the other.... Welcome to the party baby M!

On the way home from the hospital yesterday, I took advantage of the fact that the older girls were with my sister, and stopped by the new Ikea. I am in love with it's huge, maze-y shopping goodness. I am in love with my new front room lighting. I am in love with Mr. Dadguy who will be installing it as the other half of my birthday gift! Meet my new 12" Fado... and wow, who'd-a thought that last bit would sound so NAUGHTY!

(the lamp is called a Fado, people... sheeesh!)

Sunday Pic: Gratitude

I spent some time this afternoon writing Thank You notes for folks who have assisted Chaos this past while... I'm not done yet... and I haven't got addresses for some of you. But we are some blessed folks. J.D. from Tripping Over Cobblestones sent out a care package with magazines for me, and some shades for the girlo. The glasses, which had rose colored lenses, are broken already... but not before LaLa had the opportunity of putting them on and remarking to me how big and pink my bummie was. Nobody sent Dadguy and I a gift certificate for iTunes... for new music to cheer us up. Elizasmom sent a GC for Amazon. The "mom" part of Mom and Pop came to visit bringing a book and a toy. Sarah came to visit, bringing cheer and good conversation. Jo of TangledMe visited with gifts.... and now Mama D has weighed in with gifts all around! These wands and wings for the older girls, a dolly for Pearl and some Aveda haircare products for moi!

Dude... that's just the folks who have websites that I can link to! Y'all are some huge-hearted and awesome folks.


I have also had some new people come by to visit the bloggy and leave happy and kind words of support in addition to my longertime friends. My only regret is that I am so disorganised and so much shorter on spare time that I don't get by to say hey back to them. Or leave regular or better comments on YOUR blogs. I feel like so much is being done on our behalf.... I hope I am not overlooking anyone and that if I have, believe me, we are sooo grateful for all that is being done.


Just one other thing.... I am looking for a good pediatric dentist. Somehow Birdie smashed/popped/levered out one of her bottom-front teeth, tonite after lights out. She says she was biting on a plastic, Happy Meal figurine of Peter from the Lion the Witch and the Wardrobe. Only she insists that he is "Link" from Legend of Zelda. Anyway she was biting on him when she tripped? Fell? Was jumping on her bed?

Almost the whole tooth is out, but it looks like there may yet be a splinter of the root left in her gums. So if you know anyone in the Valley....

Yeah, I know. The hits just keep coming. Wheee!

Where Does My Time Go?

The Parent Bloggers Network in conjunction with Light Iris is holding a little drawing to send a blogger to this years BlogHer. The topic "Where Does My Time Go" fits in nicely with something that I wanted to talk about anyhoo... my time, and where the crap it has gone.

At first I thought I'd give this one a miss, but then I read the fine print and realized that this wasn't a writing contest... nope, it's a random drawing. If it were a contest then I'd feel compelled to spend some time on writing the post, and time is something I ain't got so mucha these days. Plus, I don't know if I'd be able to get away to GO to BlogHer. Time.

BUT.

A couple of days ago my sister Shel, in Colorado called me. She had tried to leave a comment on this post, but Blogger ate it, so she called instead. Normally I get griped at Blogger when it does glitchy things like that, but I let it slide this time. It was a really good conversation, but the main reason and message that she had for me was to relax. Most especially, to take some time for myself. She is so very right.

I have never had a pedicure, but I love the idea of one, and I love the way they make your feet look. I had decided that this year for Mother's Day I was gonna get me one! I had cherry-red polish in mind. A girlfriend of mine and I decided that we would go together, after checking with one of the neighborhood divas as to where was the best place to go. If you have kept up with this blog, you will know that this did not happen, as I spent the better part of the month of May with my youngest in the Children's Hospital.

I commit to getting a pedicure within this next week.

My hair was overdue for a cut and color by several weeks, over a month ago! I hardly noticed, because the hospital lighting in the bathrooms made it seem as if I still had highlights. It was not till the last week in, that I looked close enough to realize that it was not highlights I was seeing, but strands and clumps of pure white sprouting from my head.

I commit to a cut and color. I have an appointment for next Wednesday.

Plus I want y'all to know that I have watched two chick fliks and consumed decent chocolate in the past few days. In that same vein... I commit to three good sessions on the exercise bike in the next week to offset this necessary consumption of chocolate.

Not positive where my time went... but I know it's not gonna just show up, so I'm going to TAKE some time and MAKE it mine. At least I'm going to try!

G-Tubular... dude.

So the girlie has a Gastrostomy Tube...
it looks about like this (the cartoon version for those of y'all with a weak constitution).

Once I got past my initial, erm... dismay at the Frankenstein nature of having a tube poking out of my daughter's tummy, and started to be in charge of the care of it... I began to realize the pluses of such an item. Especially in dealing with a toddler.

Hate the Tylenol tussle? You know, the fight you have with a cranky kid who would feel better and be less cranky... if only you could get a teaspoonful or less of the crappy purple stuff down her gullet? You have a G-tube and there is no fight, no consultation, no hassle. You just pop open the med-port on that bad boy and *boop* the child is medicated.

Kid hates that nasty Pediasure, but is not getting enough nutrition? Yeah... the G-tube! Concerns about the hydration level of Junior? Nope, not anymore.

I'll be sad to see that sucker go for the above reasons.... but only for those reasons.

By the way... if you haven't checked out the cool video that Mama D made for me... go have a gander!

Fall Out Girls

Been home for a few days... long enough to start to assess the damage.

Minimal really, when you tot up the myriad coulda-beens. Birdie was able to understand most of what was happening and why, so she appears to be the best off. I say "appears" because I want to watch for a while longer before I put a check mark by her name, and call it good.

LaLa has 100% regressed in the old PT. Don't really blame her, because while she had the best of care, by the best of folks... it was all non-routine, and hither and yon.

Then again, this morning while rummaging through her dresser, she found a pair of "Rhumba Pants," an item lovingly referred to as "Rumble Pants," here in Chaos. They are lacy and lovely. She wore them backward all day, I assume so she could admire the lace and the bow as she pulled them up and down. What mattered to me is that she WORE them all day. Dry.

It was rather encouraging.

Pearl. That's the really hard one. It's hard to know what to do, how to help... primarily because of her age, but also because of her personality. It was commented on by many people who know the Chaos Girls in person, that we were lucky that this happened with Pearl instead of one of the older girls. Birdie and LaLa are that breed of over-the-top crazy that would likely be ripping out IV lines, stripping off PulseOx monitors and generally raising bloody heck. I have to agree. Pearl is that mild and soft baby girl who does NOT pull on puppy ears. She is sweetness and genteel silence. She is a watcher. But because of these attributes I worry that this experience has driven her further into herself and made her fearful. Especially while she was IN the hospital she was introverted, silent and needing her mama at every moment. Except for those moments when she was sucked into the world of Baby Einstein Crack. It was because of Baby Einstein that I showered and ate meals. While I know on a certain level that she won't "remember" all that happened, she is not unchanged by it.

Home is better.

Being at home has given me back my laughing Pearl, my smiling and talking Pearl. Which, by the way... she came home from the Hospital with words for fish, cat, dog, ball, bubble, prayer, up, down, chick, cow, cracker. Today as I was reading some blogs, she came to my knee and said "up-up, mama!" Granted it sounded like "uh-uh, mama"... but we went up and down the elevators so many times, on our endless wagon rides through PCMC that I know "up" when I hear it.

We are easing back into our lives... except for sleep. She tends to wake up along the same schedule that she had been awoken by nurses taking "vitals" every night. She still must be rocked back to sleep each time.

Sadly.... the freak of the week is the mama. I feel like I am OK with a side order of screaming meemies. I am having nightmares of losing my children; both at night and odd visions of disaster while awake. I think it may take a while to wind down from it all.

Brief bullet point list of "It All."

• witnessing my child in pain
• witnessing my child screamingly afraid
• helping to hold down my child while they do something either painful or scary or both
• fear and uncertainty in my own heart
• witnessing the torture of my child via the sleep deprivation which is a side effect of nurses having to take a child's "vital stats" every four hours
• rocking my child back to sleep upward of six times during a 24 hour period of time
• trying to decide at what point I tell everyone to back OFF already
• trying to find a way to communicate with a new nursing staff every twelve hours to make sure that they see my baby girl as a baby girl, and not a "failing IV," G-Tube or a set of stats to be taken and recorded
• fighting with doctors to get her more relief than mere Benedryl and Tylenol
• trying to make sure that I don't become Mrs. Unreasonable or ThatMom
  
• fear and uncertainty
• boredom and loneliness
• worry
• worry
• worry
  

Yikes.... I gotta stop this. I feel like this blog has become a pit of despair. There is a mental YouTube-style vid that plays in my head, of a happy blog surfer saying to themselves, "hey, let's see how things are panning out over in Chaos! That Pearl kid was really starting to look OK." The person at the computer screen clicks on a link and this webpage comes up. First the brow knits, and then comes the look of horror, followed by an audible "OH! ... oh... oh NO." The next day they return, blithely thinking that it's got to be getting better, only "OHHHhhhh! NOOOO!" And the next day...

I think I'm done for the night.

Sunday Pic: Better

Thought ya might enjoy seeing this... I know I do!

HOME

We barely avoided being trapped in the sucking void that is PCMC beuracracy. We are tired and more than slightly freaked out. All scheduals are jacked, all bets are off...

...but we are HOME.

Halle-freakin'- lujah

Notice the hand... puff-baby.

Once again, history is spared the worst of the visuals by the combination of my inability and unwillingness to photograph a sobbing baby that I am rocking endlessly. Plus, I seem to lack the lighting and/or mad photography skilz to record the peeling and sloughing of Pearl's skin. I shall descibe it for you...

"ew."

Her earlobes are scaley and peeling. The skin around her right eye appears deflated and both eyes are surrounded by peeling tissue. I have her greased up like a little piggy, but nothing could stop this peel... she was THAT rashy and THAT swollen.

A brief overview of Edema... her hands were so swollen, she could not grip a binkey or a ball. The ankle ID tag that, just days earlier would slide off if she pointed her toes: burst. The picture of her in the wagon... that's as far as she could open her eyes. She could no longer pee without a catheter. We had to go up a size of doobah to fit around her puffy legs. Swollen. I hated to move her because her legs and feet felt as if the skin would split if I was too rough.

She has run brief, low fevers the past two nights, followed by a new round of itchies... but it's manageable with the Zyrtec and Benedryl. She is eating and drinking on her own. She is voiding on her own. She is breathing on her own.

Barring a freak accident or a new, horrific allergy... we go home tomorrow.

Home.

Update

I cannot give any details.

I just can't.

My mind is overloaded with the yakyakyak of medi-speak. Dude, I call eating or drinking food P.O.ing, and the state of not-having-a-fever: afebrile. We got's to get outta here.

She HAS been afebrile for almost 24 hours now (please don't make a liar out of me kid!) and the edema (swelling) of yesterday is much better. She can use her fingers again.

Today I was hit with the overwhelming impression of comfort. The hallways here are thick with angels, and Heavenly Father is well aware of each little child. He knows my Pearl better than I know her. He loves her even more than I do.

....ever-thin' gon' be alright.

yo HO!

Check it Dread... we are related!

My pirate name is:

Black Anne Rackham

Like anyone confronted with the harshness of robbery on the high seas, you can be pessimistic at times. You have the good fortune of having a good name, since Rackham (pronounced RACKem, not rack-ham) is one of the coolest sounding surnames for a pirate. Arr!

Get your own pirate name from piratequiz.com.
part of the fidius.org network

She's a Gem

My poor, poor baby. She is a rare Red Speckled Pearl. This pic is from yesterday, and she looks worse today... angry red hives that are so densly packed that she is encased in hot, itchy red. Her face is a mask of hives... there is not a square inch on her body that is unaffected.

Everyone has paraded through here... Pediatricians, Surgeons, Residents, every sort of Nurse you can name, Infectious Disease docs, Dermatologists... they all agree it is a drug reaction. But it is entirely outside their experience in the magnitude of the rash. Because the allergy could easily turn and close her airways.... we do not go home till she is done. But she is also profoundly at danger of catching something... anything, and this is a Hospital. Yay.

She has also chosen to grace us with at least one new eyetooth.

On the happier side of life, I cannot forget that she HAS dodged so many bullets, and as sucktastic as this is... it could be worse. If it follows the course that LaLa's polkadots did, she could be done in a few days. Of course, as soon as LaLa started exibiting symptoms, I discontinued the offending meds. In Pearl's case, they upped her intake for two extra days. We may be a while.

Interesting tidbit: the doc who did the surgery in December (the Two-Penny Incident) came in last night to talk to us. Turns out he was there as an assist in getting the sequin out. I wasn't aware of that. I asked him if he thought that it was possible that the sequin had been there all along and he kinda looked at me like I was crazy. He said that while no one could be sure about it, he believed that it HAD been there. He said it like he had no question in his mind that it was. This is a relief and a vindication to Dadguy and I... that the surgeon who had been there both times thinks so, and would actually SAY so. I never thought that I would get that kind of concession, if only for ego or insurance reasons.

This has been a frightening path, but I really do think that the bulk of it is behind us. Unfortunately it's my beleagered Pearl who has to gut out the last of it as she has the first.

And my sweet Chaos. I haven't talked about them much here. I can hardly bear to. They are safe and happy and loved... they are doing better than could be hoped for. My mom came from New Mexico to stay with them for ten days, they have been at Gramma's house and with my big Sis and SIL. I treasure the funny tidbits that I hear of what they have been saying and doing. Many blogworthy anecdotes that will live in my heart, but will never get any play here, mostly because I am hoarding them in my heart. But also because I have become the Queen of Not-Thinking-About-It.

I don't think much about "what if" or "why me" or "how much more?" I just think about what is here, what hurts, and what I can do about it. And I think about home. I think about going home and being the Chaos Family again. Dinner time. My homemade Fettucini Alfredo that everyone loves. I think about all the girls wearing swimsuits and running through the sprinklers. Otter pops. Camping trips. Reading books at bedtime.

I know I will find occasion to bitch about cleaning up two inches of slop from under the highchair after dinner, but I suspect that it will lack the rancor that it has had in the past. I suspect that I will be kvetching with a smile on my face, shaking my head in wonder

More Hoping

Wish the title was "More HOPPING," but I'll take what I can get right now. She passed all her tests, but most important; she had no excess of white blood cells even at the hight of her fever. This means there really is no infection hiding somewhere in her body. This also means that it is probably a simple overload of strong antibiotics and meds, and she has developed an allergy to penicillin. We hope.

They have taken her off of everything except for one wide spectrum anibiotic that they think she couldn't possibly be allergic to. Now we wait and see. This could actually take a while. Remember LaLa, the Polka Dot Princess? I think it took around three days from the time we cut the Augmentin before she was all better. Once again... I'd just link to the posts in my archive, but grrrrr! You can check my archives for posts from Feb 13th, 2006 through feb 16th. Likely the same timeline for this.

On a happy note, she is back on a clear liquid diet with one noteable exception that I twisted out of them.... ice cream.

Who loves ya, baby?!

Not So Great News

The girlie, she has been running fevers. The worst was last night and today, plus she started with a funky rash thing all over her body. Her heartrate has been way up there too... tachycardia. We have spent all day, running back and forth with the Esophagram, Xray, CT scan plus no more eating or drinking. Plus her IV lines have repeatedly failed, so now they have one in her foot. She is not allowed to walk anymore. Not that she wants to, she feels pretty crappy.

I've had my moments feeling pretty crappy today too.

All the tests look normal, but they aren't taking any chances. Next come some blood tests and tests to see if she has a bladder infection. I'm just hoping its some dumb virus that just freakin' goes away!

hope.

Sadly, they had let here start with soft foods yesterday, and they were set to pull the drains in her neck last night. The nurses had fully expected to send us home today... tomorrow at the latest. Now the best we can hope is for the fever to stay away for 24 hours and then start with the liquids again.

hopehopehope.

Sunday Pic

Rockin' the PCMH old-skool, baybay!

She passed her Esophagram with flying colors! So much so that the doctors ordered a diet of "Clears PO" starting Saturday morning. This means clear fluids BY MOUTH! This is a HUGE deal... this is also a full month and a half sooner than they had every intimated this could happen.

Before you say... clear fluids, whoopty-doo! Check out this list of possibilities:

Water
Enlive- an apple flavored nutritional energy drink
Carnation Instant Breakfast Juice Drink- in orange and berry flavors
Apple Juice
Grape Juice
Cranberry Juice
Gatorade
Sprite
Rootbeer
Chicken, Beef and Vegetable Broth
Jello
Popcicles
Slushes

Dude, they have a Slushie machine on our floor!

Here's the deal... her surgeon, Dr. Brilliant-Surgeon the Queen of the Worst Case Scenario shared with me a vision of the best case scenario. You interested? Yeah, I was too.

If everything goes perfect... we could leave the hopspital with the G-tube in place as a "precautionary measure." There is an outside possibility that we never have to use it at home. I am now struggling to not get my hopes up. That "sproinging" sound you hear? That is me failing horribly.

But the pressure is ON. Last night she busted her PICC line. It was a freak accident, but if she cannot get up to speed in three days? We have to put her back under and give her a new line, and back to square one. Currently she has a plain old IV line that is keeping her hydated. So this weekend's family "Fast and Prayer" session is still on. If you would like to join in... you ARE considered part of the Chaos Family via Trial-By-TMI.

Some Good News

Just as clarification: The two weeks of healing is just the minimum amount of time to allow her esophagus to heal before they will chance her throwing up real and for-actual fluid. Once we get to that point, we start feeding her through her G-tube. If she tolerates THAT? Then we head home for the hard part. Life with the G-tube, and somehow keeping all food and drink out of this poor kids mouth. For about two months.

The good news? She had already demonstrated that she can swallow.... her own spit goes down nicely! She has already demonstrated that her vocal chords were not compromised, she can talk, laugh and cry. Just not very loudly yet. So long as I can keep her from using her throat.... for any kind of eating and drinking for the prescibed time, we should be back to normal. Right now I am tenuously hoping for our annual Pioneer Day trip to the lake. For those of you who don't live in Utah.... that's around July 24th. Hoping for it, but prepping myself for a summer of G-tube frolic.

More good news? My concerns about her funny swallowing sound and the appearance of swelling above her neck incision actually delighted the surgeon when she saw them later in the day. The funny sound is just more of the healing process. The swelling was not swelling at all, but a decrease of swelling causing the flesh above the incision to kind of sag down and give the appearance of puffyness. The oxygen dip? Is something that happens to lots of folks as they naturally fall asleep. As a matter of fact, she is now DONE with that particular annoying monitor, and only has to get checked with it once a shift rather than try and sleep with it on. I say annoying because every time she rolled over it would shift, and the crapping alarm would go off and wake her up. And then I would wake up and have to rock her back to sleep. It is possible that a cranky mama snarling at the night nurses had a little something to do with the end of THAT experiment in sleep deprivation.

More good news? She can swim and bathe with a G-tube after it heals, and we are almost half way there. More good news? There are many people who care very much about this little girl and the Chaos family. The goodwill and love is pouring in. I SWEAR that I can feel the good joo-joo being aimed in our direction! I have been getting e-mails and calls and visits from family and friends. Jo from Utah (links are down... you can find her though my comments) came to visit me yesterday. She brought a gift bag for Pearl and I. I now plan to have pictures soon of the girlie with TWO defiant ponytails, complete with a bit of ribbon froo-froo on each, thanks to Jo's kindness.

Another lurker around here is a co-worker of Dadguys (hiya J!). She sent over a large toy drum just packed with the cutest bug themed instruments and sound makers. It sounds like a par-tay around here. Neighbor down the street sent over some "light reading" and treats, along with a Braveheart Lion toy. Elizasmom sent a gift certificate for Amazon.com, and I think we WILL take her advice and get us some Pigeon Books. The poor women in my Ward are a little distressed that we have not yet asked for help, but really? We have been so well taken care of by family, it's hard to find a spot on the Wagon of Chaos for more people to help push! I bet we will be asking for help later though.

Tomorrow is gonna be a very big day. She gets her first Esophagram done. It's a swallowing, x-raying type test-a-ma-whoosit that will give us an idea of how the healing is going. It is perhaps in the realm of possibility that we could go home some time next week. Maybe. Please?

Well I gotta go. Pearl is napping and I'd like to use this time to take a shower before my Sis comes to stay with the girlie so Dadguy and I can go see Spiderman 3. You heard me... I'm goin' on a date tonight!

Untitled

Bear with me... a little post-therapy.

I think I'm a little raw today. Don't know if it's because she seems to be a little puffy above her neck incision, a funny click as she swallows while binking or maybe the two times that her oxygen dipped low enough to get her Pulse-Ox monitor beeping as she fell asleep for her nap just now. Maybe it was that I experienced changing her Gastrostomy tube bandaging this afternoon for the first time myself.

I can do this, the G-tube thingy. But I won't kid you, nightmarish is the term that I have for it in my heart. I get to party old-school-nightmare-style with the Pearl girl twice a day for the next two weeks till the G-tube site heals. Then about three times a week, or as necessary. Hopefully I will get to a place where it does not sear holes in my heart every time we do it.

Don't get me wrong. I'm going to be very good at it. I am already careful, firm and thorough. I pretend that I am a nurse and that she is my patient, not my screaming babygirl.

And I just keep thinking that it takes a very special breed of human to work in a place like this. A special strength to do what must be done.

I feel myself already starting to bend and change with this experience. I am open to what I must become to survive this. We're gonna make it, but it hurts.

I went into the giftshop just now to see if I could find some little girl rubberbands or hair-doodads. They didn't, but as I looked at all the carefully displayed items that they had, I noticed that it was all so attractive. Enticing and useful things like funny, brightly colored kids socks that come by packs of three socks; all three differently patterned and mismatched. Cute lipglosses. Sweet little toys for babies, and lovely hand creams for moms next to children's books and funky wristwatches. I thought about getting some lipglosses to give to Birdie and LaLa the next time they came to visit. I started crying and couldn't stop. I paid my dollar for the small pair of nail clippers I had in my hand and fled that little oasis of cheer. No one commented on the tears, most people have a way of looking to the side to give those who are crying a little bit of privacy. I am grateful for that.

I am starting to understand an interesting array of things that I never before cared to even think about. And as much as it galls me to expose myself in this way, it has to be done or I will fold in on myself till I can't go anymore.

I want to thank you for your thoughts and prayers. I read it in your comments, and know it from the knowledge I have of you and your lives from your blogs and past conversations. You buoy me up. Thank You.

Sunday Pics: New Stuff

Here are a few of the new and improved Pearl features and upgrades:

*now comes in sans sequin and sans apricot-sized-abscess model!
*new three to four inch incision at base of neck, complete with stitches and surgical tape.
*two drain tubes sprouting from incision site.
*handy snap up purse to hold drain bulbs at ends of tubes with saucy over-the-shoulder straps.
*ankle bracelet name tag.
*Long term IV insertion in left arm, plus countless meds, fluids and nutrition being dumped in daily... comes complete with 35 lb mobile IV stand.
*three inch incision on tummy, plus an all-new gastrostomy draining/feeding tube just to the right of site (model shown here with newborn sized diaper at end of tube to catch the various fluids and yuk draining from a veeeery empty tummy).

Act fast to get yours now, many features will not be available for long! But wait...if you order today you can also have the special "Million Dollar Toddler" option package that comes complete with insurance busting health care bills, Premiums and monster deductibles. You know ya wanna!

Happy Mother's Day

We made it off of the PICU (Intensive Care Unit) yesterday afternoon. Thank heavens. The girlie, she was still foggy and lethargic from all the hootie they had pumped into her the previous few days to keep her under. She is breathing on her own.

Today is a whole different story. By the end of her day she was trying to push her own IV poll down the hallway on her walk. She entertained herself booting at squishy soccer balls out on the terrace for a while, and then tried repeatedly to climb into the fountain downstairs. There are a ton of coins in the fountain, and I cannot get over the creepy feeling that she wants to get a few handfuls of change for a snack later on.

The new room is pretty great. It's large and comfy and it has an adjoining bathroom that comes complete with a shower. There is a TV that has a PS2, VCR and DVD a radio and a fold out bed for me to sleep on. There is a huge play room with books and toys and art supplies galore... all this is good because we will be here for anywhere from two to six weeks.

There might be funny or witty folks who could find some humor in this, or find the funny parts, I am not one of them. I am keeping my mind focused on the moments of joy, and the vision I have of Pearl running and carefree... but yesterday when the doctor gently scolded me for wanting to rush the healing process, because I was trying to find out what was the soonest we could move to the next phase, I started crying for the first time since the night before surgery. Huh... now that I think of it, it was when I was talking to her that I had cried that time too. She is apparently an awesome surgeon and doctor, but a mistress of the worst case scenario, and not a puller of punches. I felt very sorry for myself.

I wallowed in self pity all the way down to collect the last of my stuff from the PICU. As I was packing my stuff to go, one of the other mothers in the PICU waiting room noticed and asked if my baby had made it off the floor. When I told her that she was already upstairs that mom cheered with her hands in fists, pumping victory above her head. I gave her a short sketch of where we stood and then asked after her boy. Apparently he was born with only half a heart... but if this surgery took and then the next two or three surgeries, then he'd have a normal boy life ahead of him. There was another mom sitting on a couch nearby who had been listening intently, she offered her congratulations. I asked about who she was there for, and she told us about her baby girl who had a very rare form of brain tumor. Somehow it was in what she didn't say that stopped me cold, and after a short pause she finished that it was spreading down her spine and nobody knew what to do. Her baby is nine months old. Her name is Destiny. We all got very quiet, and we all three cried.

To my mom.... Happy Mother's Day. To all y'all women out there who nurture, love and cherish... Happy Mother's Day. But especially to all mom's who are losing or have lost their babies.

Happy Mother's Day.

Pearl's Motto:Eat The World:

Well, we got our miracle... surgery is done and now it is all about the recovery. It is gonna be a longer road than you might think would be warranted for a measly pinkish clearish sequin not quite the size of a dime.



Then again, you leave it in a body for as long as this thing appears to have been in Pearl's throat? Well, a few months on a feeding tube may seem like small potatoes, or I guess it would be liquefied potatoes. Whatever. The important thing to remember is that this may in fact, be the cause of her problems, the entire cause, and nothing BUT the cause.



I will tell the tale, but right now I'm gonna sleep. It looks like she will be at the hospital for at least two weeks... so there will be PLENTY of time to give you all the TMI details.