Ya know what really sucks?

When your precious little kid is labeled with these 3 diagnoses:

1. Feeding disorder of infancy
2. Gastro-esophageal reflux
3. Failure to thrive


I ordered 2 crates of pediasure from a new company today and had to get a letter from her pediatrician stating the need for them so we could get reimbursed...

He sent a letter stating those 3 diagnoses and its so sad to see it in print...

Things that make you go 'hmm...'

2,157,120How Many Germs Live On Your Keyboard?

Crutch Free!

Today was my first day crutch free - and it wasn't as fun as I'd hoped. I have no ankle... its all swollen and hurts. I can't wear shoes and still have to elevate my leg... but its SO much better than it was Friday and Saturday.

If luck holds out I'll be doing my Couch to 5K program in a few weeks.

Even better was that I fit into single digit jeans this weekend - first time since the month before I got pregnant, that felt fabulous!

18 months check up...

So Arianna had her 18 month check up today. I was very anxious to see how she did the last few months with gaining weight. This summer has been fabulous for her - not sick even once and developmental explosions left and right.

We worked SO hard to get her to gain weight after being labeled failure to thrive in May. It worked, she lost the label and got back on her curve putting her at 25% for her ACTUAL age :)

Today I put her on the scale and she was only 20.0 lbs

Yes, that means she only put on 4 oz. in 3 months. Yes, she grew 2 inches but she slipped from the 25th percentile to the 2nd percentile and has THAT label again...

He doesn't want to do anything until he sees her again but I'm so sad.

She eats well, not great. She eats a wide variety of things but in any one sitting she doesnt' eat much. She looks chubby but when she bends over you can see her spine and ribs through her back and that scares me.

I hate that THAT label reflects on us as parents - even if its unjust. We try hard. She drinks pediasure like its going out of style and we give her lots of full fat foods and she's still not putting on weight.

But she's happy and healthy otherwise... so I guess I should look on the bright side...

Preemie Magazine shuts down

Dear Preemie Magazine Subscribers:

Preemie Communications, Inc., the parent company of Preemie Magazine,
regrets to inform you that the company has officially shut down and is
undergoing bankruptcy proceedings.

This is an unfortunate outcome for such a promising community, but a
necessary one due to the inability to attract new owners/investors to
cover expenses and debts. The company is truly saddened by this turn of
events, but would like to thank you, as a subscriber, for helping us
fulfill our mission in educating so many parents and professionals in
the preemie community over the last two years.

Respectfully,

Preemie Magazine/Preemie Communications, Inc.

I was not surprised to hear this after PreemieCON was canceled due to lack of interest. I think this magazine COULD do alot of good and the articles were very informative. I had been receiving it for a while and saw the shift slowly change when the March of Dimes became a sponsor. I find much of the MOD message is to push their 'miracle preemie' agenda and not show enough attention/support to those who didn't have the 'miracle preemie' experience, but I didn't feel it was enough to entirely undermine this magazine. It was also heavily backed by Pediatrix - a PUBLICLY traded company that has a large hand in many NICUs around the country. I have big issues with that because I've learned that some NICUs will do anything for money - even at the determinant of the preemies/families involved - so to see a publicly traded company gamble with the lives of our children back a magazine like this (thus getting their name 'out there') well... disturbing...

I'm sad to see it go because it was one of the only magazines that brought alot of the issues forward into 'close to mainstream' and was the only support for many families.

I'm sick...

In the head...

I've gone to bed semi-crying for a few weeks now... yes, daily. I have the same routine just before bed. I use the bathroom, step on the scale and then tiptoe into Arianna's room to see her sleeping. Then I weep a little (gosh, I'm even doing it now) and trod off to bed.

My little girl is growing up and I'm so sad to see my baby go away.

Every day for these past few weeks I've told Shawn (usually dozens of times during the day) "I want another baby...", to which he says no.

Whiskey Tango Foxtrot?!

Why the heck would I want that?! Arianna's first year was a type of living hell that no first time parents should have to go through and I want to do it again?!!

Yes, I do - badly. So badly it makes me cry.

It scares me, I won't lie. My mother and I have had many conversations about this the last few days (she's been helping while I'm off my feet). What will happen next time? What if the next one is a preemie? (Ok, the waterworks start...). My mom ended up on hospital bed rest (and teetering on insanity she tells me) for MONTHS with my brother and he was still premature (34 weeks) and spent 2 weeks in the NICU.

A conversation with my OB, post delivery, revealed nothing helpful as to why Arianna came early. Was it my LEEP and cone biopsies 10 years ago? Was it bad family genetics (I'm a preemie)? Was it an infection? Was it devine intervention?

Whatever it was it can't happen again. I don't care if I have to be on bed rest for months - I don't want a sub 34 weeker! I'm so scared... yet I want another.

Part of me wants to regain what was lost to my first pregnancy. I never had the chance to even 'look pregnant'. I didn't get people offering seats on the bus or opening doors for the pregnant lady. Heck, the day I went into labor I was at the maternity store buying my first outfit! I missed out on all the complaining pregnant woman do... I missed out on bringing home a baby when I left the hospital. I missed out on a 'surprise' baby shower. I missed out on annoying doctor visits...

I want a normal experience, but I know no birth experience I ever have will be normal... so I'll settle for a fullterm (or close to) healthy baby. Is that too much to ask for?

I'd love to hear from Mom's of preemie's who have had children afterwards - what precautions were taken (or not taken) and any advice you have to give.

Hubby says we have to wait until February (at the earliest)... so I have a bit more crying to do.

Bye Janice!

Last Friday was Arianna's nanny's last day.

We knew we would only have her for the summer but it was hard just the same. I went back to the house at lunch time last Thursday and Thursday night I put together a 'word book' (that says THANK YOU down the side) of pictures of her and Arianna as well as some 'solo' pictures of Arianna from the weekend before. I must say, it came out really cute and Janice loved it! So much so she asked if I could put one together for her husband for his birthday!

This Tuesday Sarah starts and we're just as excited about that!

I feel bad that her first week has me here almost the whole time...

I sold it....

Yes, I sold my skydiving equipment.

It was about time though - I had been holding onto it knowing that I wouldn't be jumping again anytime soon. Selling it was much easier than I thought too. I listed it in the classifieds at dropzone.com and within a day it was sold.

A student jumper in San Marcos, TX bought it - he sent me a check and I mailed the rig and one of my helmets to him. He got it on Friday, loves it and now the money is mine to spend!

I bought a new scrapbook cutting machine (you can read about it here) and the rest of the money is going toward a kick ass vacation for Arianna's birthday in March.

We're meeting Shawn's mother (who I love more than my own mother many days) in Florida to enjoy a week at Club Med! They have child care which will be nice, and with mamaw (southern for grandmother! haha) there we are sure to have a relaxing time and get to do what WE want to do! I'm very excited.

I have a feeling it will be the last vacation we get for YEARS... I'll explain why later...

D-Day...

Finally!

After they attempted to reschedule it on Monday... I finally had my surgery today.

I got there at 8:30 and had the pre-requisite blood work (and pregnancy test, which was thankfully negative, as expected) and then was ushered into the back for other pre-op testing etc. From the moment I got there I was impressed with The Miriam Hospital. I had my other fasciotomy in 2004 at Rhode Island Hospital and was not impressed by any means - they didn't even give me crutches to go home with!

Miriam Hospital is a Magnet award winner for the nursing staff and it was very evident. I have NEVER had an IV that didn't have to be replaced multiple times. When my ICD was originally placed I went through 9 IVs. Next time I'm getting a PICC line - not kidding. Anyway, my blood work, one shot. My IV - one shot! I was in awe of this place!

Any way, they wanted an EKG due to my defibrillator and they had a new 'high tech' machine and all the nurses wanted to figure out how to use it. I had many apologetic nurses in my little curtained off area but they wanted to see it 'in action'. I have no problem with medical curiosity surrounding me. Long QT Syndrome is so rare and I've had so many bad experiences with medical people not fully understanding the severity of it that I welcome questions (I'm very informed, kinda geeky like that). They were great, made light of much of the commotion and I welcomed the levity.

My interval was 420 - normal (anything under 460 in woman is normal - I average 540 and have been as long as 650). Odd, as I've never had a normal one outside of pregnancy/breastfeeding. No complaints from me though as they didn't need a reason to not do my surgery.

At 10:30 I was given something 'to relax' me... which my mom joked would put me right to sleep - but it didn't and I was able to get myself to the surgery suite and onto the table without any problems. I didn't have much time to look around before a mask was shoved on my face and I was gone.

Woke up an hour later all bandaged up leaving the surgery suite. My leg already hurt. Last time it didn't hurt until I got home. Last time I wasn't given general anesthetic though - it was all local which I think provided a nice pain 'block'. I slept a bit in recovery, then got some pain medication, drank some soda and sat in a chair for a while.

We left about 1:15 and drove directly to Subway for a veggie sub - I was starving. Mom was nice enough to pick it up for me and drop off my vicodin prescription. We got back to the house and I hobbled on my crutches down the walkway to the porch. I tripped over the top step and fell HARD on my hip and legs. All I could do was scream - dang that hurt. Thankfully the ice pack I had strapped to my leg padded the sutures some what but my other leg, hip and face didn't fare as well. I have a huge gash on my other ankle (which ironically hurts more than my surgery leg now), a big bruise on my hip and a sore cheekbone. I crawled into the house while my mom sobbed - she was so mad she couldn't help me (she's got a really bad back).

I haven't moved from the recliner since - whenever I do Arianna screams at the sight of my crutches.

This hurts a lot more than I remember it. Shawn is being a big trooper helping out - so much so that he'll be doing a transport for 3 cats in Siamese Rescue this weekend that I signed up for yet conveniently forgot about the whole 'not able to drive' part (oops!). I've got a great hubby :)

I'll be camping out here for the next 4 days - so expect lots of blog posts!

6 years ago today...

About one hour ago, 6 years ago, I was in my bosses office at Cumberland Farms Corporate Office being laid off. I would leave his office ready to pack up my desk when someone from another office came in saying a plane had hit the World Trade Center in New York.

I remember thinking "I should just leave"... then the news said another plane hit and then the pentagon was attacked. People from the office were leaving to get their kids out of school but as our office neighbored Boston (and the city evacuated) the traffic made it so you couldn't leave.

I honestly thought we were under attack. I had dreams of Empire of the Sun in my head...

Are we any better prepared now?

When I worked at Rhode Island Hospital I worked (in one of my many capacities) as the assistant to the director of emergency preparedness. He was also a state senator (who passed major fire law reform for the state) and one of the EMTs that responded to the Station Night Club fire. He was called to New York city in 2004 for a meeting with the city government to help them be better prepared for another 9/11.

3 years later and they still had no idea how to be better prepared for something of that magnitude.

I have a feeling not much has changed since then, and thats sad.

We have a walker!!

Yes, 3 days shy of her 18th month... she FINALLY started walking! She's been pushing stuff around the house, walking forward (and backwards!!) for months... and last night she FINALLY took off!

I'm so proud of my little monkey!

Being a Responsible Blogger

Alrighty...

I'm back to blogging with some big exceptions.

I need to change my sub-title...

I will no longer 'vent' on my blog because the potential backlash is too great. I will not talk about my personal relationships here and more importantly will not talk about my work here - its pretty stupid too, if you think about it.

This will make my blog more boring but I didn't talk about these things too often, so I feel it's not the end of the world.

6 people to 'start over'

When you were in elementary school were you ever assigned to groups to come up with a list of 6 people (and only 6) that would survive the apocalypse and start the human race over again? I was assigned that in Mr. Luce's 4th grade class and, surprisingly, in a college class nearly 15 years later.

For some reason its in my mind this morning on my way to work...

For my 6 people I would have a few 'prerequisites'. They have to be under 30, in good health with no family history of genetic abnormalities.


1. Woman under 25 with proven fertility

2. Woman under 25 with proven fertility

This is a no brainer - you need women to give birth to children to repopulate the earth.

If either of these women also process any of the qualities of the others, and so can count for 2 spots, the empty spot should be filled by another woman with proven fertility.

3. Person with agricultural science background

Preferably a professor of agricultural science who understands crops and growing food in all climates and understands water and how to get it from a variety of sources.

4. Person with mechanical and electrical engineering background

Mechanical more than electrical experience desired - to help rebuild societies buildings, bridges etc.

5. Person with army experience

Person with army experience and understanding of surviving under adverse conditions. This person will help create a sense of security through passive protection (not aggressive)

6. Person with medical background

Preferably with experience volunteering in 3rd world countries. Will help keep people well and train others to care for each other.


I think about this exercise a lot and my people almost always change... sometimes you want a porn star for levity, ya know?

There is a reason...

I've been lax on posting here for a few weeks even though I have a lot of things I want to write about. I feel I can't post them here because I'm afraid of a certain group of people reading them.

All I can say is I'm very stressed out and cry a lot over some things going on in my world right now and could really use some people thinking good thoughts for me.

Thank you!