An update....

Really need to get better at updating.

So after a lot of thought and consideration I've decided to share my story ... Not that I think my life is THAT interesting... But my medical issues ARE. so, having said that, I have 2 upcoming surgeries:
1. I'm having a trial c2 area stimulator implanted in my head to try to ease my headaches. That's anytime from now to the summer, silly insurance.
2. I'm having gastric bypass mid April. ( to lose weight in hopes my intracranial hypertension can resolve, too lessen pressure on my subluxating and dislocating joints and back pain...) very exciting

I've also decided to talk about how cannabis helps me... Its been life changing.

I'm going to vlog my process and how this affects my symptoms and maladies. Does anyone have experience in this and have any advice.
There are exciting roads ahead and I am so amped for the journey!!!
Sometime I'm the next week or so. I'll start posting my journey.
I'll post links to any videos and such.
I'm sure I'll be using youtube, snapchat, instagram and Twitter... 😍

💜💜💜💜💜

Cha-cha-cha-changesssss

1. I suck at blogging.

2. Life. Ugh.

So in the past few months my body has continued to revolt against me, and I've decided to grab my health by the balls and get shit under control...

I've come off almost all my medication. ( no more Topamax, no muscle relaxers, greatly reducing the number of oral tablets taken daily.
I'm still on Prozac (40mg once a day), and Prilosec... but that's really it for prophylactic meds.
I'm getting Botox every 3months for migraines (31 shots in my head, Face and neck) and I was getting occipital nerve blocks but we're paying them out (against my wishes), because I'm going to be getting a C2 area occipital nerve simulator implanted. (google it, weird shit... Just a step closer to being bionic )

Most of what I take now is vitamins and supplements. Multis, magnesium ( said to help reduce migraines), D3 ( I'm wicked deficient), calcium, B-complex ( good for migraines) N-Acetylcholine (helps OCD/anxiety / depression) ....
I still have break through meds for my chronic migraines. Zomig or Migranal. I try not to use them often...
I was given meds for nausea and I hate them. I don't take them.

What I HAVE found helps is cannabis.
I really enjoy Indicas and Indica dominant hybrids. They seem to help my body pain, migraine symptoms, insomnia, and depression/anxiety... Oh and the IBS awesomeness is GREATLY  HELPED.
I'm learning to make edibles and oils so I can make capsules, topicals and treats. The longer duration after ingestion is a really great benefit and it helps keep my passions under control.

I actually have an oil infusing with herb in my crock pot right now. :-) day 2. It will be ready tonight. I'm excited because this is my third time making oil and this one looks AMAZING. Coconut oil, cannabis, lecithin...

That was in a cooled phase... So pretty....

Hopefully I'll be sampling it later tonight. Fingers crossed!!!

 Stay funky my chickens.

it is what it is

... Ever just feel like if you don't get the things inside your head OUT,  you'll have a break down? I feel like that's where I'm headed. 
I've had a migraine since Friday night. I can't get the pressure pain under control either. It's been at a 10/10 on the pain scale. Between Zomig, Caffeine, Ibuprofen, Tylenol, icepacks, essential oils and laying down I've managed to get it down to n 8/10. (essentially means I've stopped drooling and I can tolerate light and sounds again a bit)...
take a
I pretty much live my life at a constant 5/10 on the pain scale. I don't know what it's like to not be in pain anymore. It's really sad. I even said recently that if I woke up tomorrow and I wasn't in pain at ALL, I would immediately go to the hospital, because I would fear that something was horribly wrong. That is NOT a normal reaction to being painfree. 

I feel like I am mourning the life I used to live a lot more lately. I miss things I used to do with ease and with out issue.
I sat in my car and cried today because I had to drive home from the college after picking up a book and I just didn't have the strength or energy to do so, but I HAD to. (It's only Danvers to Everett!)
Holding my book and a few other items the bookstore my shoulder popped and then like a slinky just kind of slinked out of socket and I almost dropped all of my items onto the floor. Apparently my shoulder decided that a small book, a notebook, 2 highlighters and a pack of pens were beyond me to hold! I had to pop it back in at the counter. Murderous, rampaging pain. (Awesome looks too) 

My SSDI claim was denied again. My initial and application for reconsideration, both denied. I listed everything wrong, gave all my doctors information, all my treatment info, and was pretty much told to shove off. So now my lawyer has to file an appeal to go before a judge. As if I'm not depressed and anxious enough. bleh. Thankfully the lawyer handles all this shit, because I can't deal with it. 

I have all sorts of Disability Accommodation forms for school I need filled out asap too. I need to get my Neurologist and PCP to fill them out and then take care of what ever the next steps are asap. (My classes are all online this semester, since I can't handle the stress of the commute or sitting in classes. At least online, I can lay down, do them intermittently if/as I feel up to it.... If I get an insomnia burst at 3am, I can do work laying on the couch, or when ever... it's still less than ideal, but it's worked for me. I just need that safety net, since I struggle with deadlines and not feeling well)

I think the hardest part in all this is not being an amazing mom like I want to be. I never had plans in life to be a mommy... and then BAM, I wanted to be a mommy. I had hoped I'd be this kickass mom. But now I spend most of my time sick/sore/ill. I don't want all of Ashlyn's memories of my to be how sick I am/was, or that I wasn't fun enough. I want her to have memories of me being an awesome mom and of all the fun we had. I try my best to do everything for her, and hold it together, and then I crumble and fall apart once she is in bed (or at school). I just can't predict when my body is going to want to crap out on me. 

*sigh*

it is what it is. Bitching about it won't make it any better. I just keep telling myself that. I woke up this morning, so I should be golden. ... I just want one day when everything is easy/perfect. just one. (and for all my lovies to have the same thing... one easy/perfect/peaceful day... )
Is that too much to ask?

... humbling mumblings.

I had a delightful chat with the 11 year old girl across the street today. She is SO wise beyond her years, and I LOVE talking to her. (She comes out when her little brother comes out to play with Ashy and the girls. She loves to sit on the stairs and talk to me about "tween stuff" while they run around)

I was doing some discussion board/introduction homework and she was telling me about he homework and classmates. She wants to be a doctor, and she knows she has at least 8 additional years of full time college, and she's excited for it. She loves math and science. She's such a smart and polite spitfire. She was asking me what I had wanted to be when I was a kid, and what I want to do now... 

So I told her the truth:
I don't know what I want to be when I grow up.
I'm 33 years old and I have no career path or mindset for a job (or if I'll really be working one in the near future) 

When I was filling out my enrollment application for the Voke, I wanted to either do Architectural Drafting, Commercial Artistry or Cosmetology ... I chose Welding. I didnt follow it as a career, I ended up in Customer Service.
I never went to college.
I always wanted to be a tattoo artist, and then I wanted my degree in Art History. I never followed up on getting an apprenticeship because I was too shy, too afraid of rejection, or too high. 

I finally find happiness and start following some dreams, and taking steps to DO what I want.

and then BAM, my body and brain decided to start revolting against me.  In less than 10 years I've been diagnosed with all sorts of crap, had a bunch of surgeries, given up things I've loved... It breaks my heart. I fight and fight for things, and I feel like its all in vain.

I want my degree. I know its ONLY a Liberal Arts Associates degree, and everyone's like, That's stupid, its a waste degree, but DAMN IT, I'm busting my ass for it, just like I did for my Substance Abuse Certificate. 

I try to fight through my pain, and find a way to do what I want... but I barely have the energy to get through the "What I NEED to do" things. I have to take care of Ashlyn, I have to help try to run a house hold. I have to remember to eat and take care of myself. Beyond that, everything is secondary. 

It's just hard and frustrating to watch everything you've every wanted, and everything you've worked for be ripped from your aching hands. I don't see the same person in the mirror I once saw, and it breaks my heart. I would give anything to have myself by for 48 hours, just to muscle thru all the grunt work of my week, but mainly just to see the spark in my eye that I had before I became exhausted and burnt out. 

I'm worried I've taken on too much. Full time for this semester. Ashy is in school. Plus I'm sick and in pain... I want to sign up for the PTO at school, and maybe help coach TBall in the spring...

I am going to die. 

I get a little absent minded...

I get absent minded, obviously. Its been... 3 months? 
The walk went great. Meaghen and I completed the 14+ miles around Boston (The entire walk route.) It rained. We still killed it. 
I raised just OVER my $1000 minimum. It was an emotional night, but well worth it all. I pushed myself emotionally and physically, and I couldn't have asked for a more amazing group of people to do it with. My hips started "slipping" around mile 10... the right one. Around mile 12ish, the left. I was miserable, but I refused to stop. It took me days to be able to touch my hips... the limping took over a month to subside. They still aren't "RIGHT" months later. 
Which reminds me... I started seeing a new PCP. She is recommending a Rheumatologist and a Physiotherapist for the Ehlers Danlos Syndrome, Fibro, subluxations, and to see if there is a chance of arthritis. (*sigh*) 
Onto the head demons... For the Chiari / Chronic Migraines / Occipital Neuralgia / Intracranial Hypertension: I've been seeing Dr Nardin at Cambridge Hospital. She is simply DEVINE and I adore her. I can't say enough good things about her. We're at 300mg of Topamax to treat the IH and Chronic Migraine. Occipital nerve blocks for the O.N. and Botox for the Chronic Migraine. I also have Migranal nasal spray as well as Zomig for break through migraines... (Which is still multiple times a week) ... 
Nothing is working for the IH / Pressure ... unfortunately. Or the constant body pain. 
I attempt to pacify myself with occasional doses of Tylenol or Motrin, but it does nothing. I find that if I smoke a bowl I do feel better. Seriously... It works wonders. I am going to be setting up an appointment to see a doctor to get my medical card by end of October. 

Ashy just started full day Kindergarten... world keeps on spinning...

Suicide Prevention and Depression Awareness

I'm down to DAYS now that we're in June. (20 more... Just under 3 weeks) I still have quite a ways to go to reach my goal of $1000 for the American Foundation for Suicide Prevention? Out of the Darkness Overnight Walk? on June 27th in Boston. Please help me raise awareness and end the stigma associated with depression and mental health. Every single penny helps us to fund crucial educational efforts to not only prevent suicide, but to help survivors and families. Please help me in my efforts... No donation is too small, and sharing my link and story helps more than you know. If you're struggling in the darkness, there is light, I promise. http://theovernight.donordrive.com/participant/ksimonelli (AFSP is a 501c3 charity, and all financials are available here: http://www.afsp.org/about-afsp/financial-information) Boston OvernightWalk Suicide Prevention Donate PayItForward Mental Health Suicide Awareness Education Fundraising Anxiety BiPolar BPD

... There's been a car parked on my head ... for over a month?!

Ok, not REALLY, but it SURE feels that way. No matter how I describe it, there's been horrible pressure in my squash for over a month... and it's starting to wear me down.

I've talked to a few people who can't seem to wrap their minds around the fact that I've had a headache that feels like my head wants to explode for that long... but in all reality, I've had a headache for well over 10 (Yes, TEN) years straight. Crazy huh?

Here, I'll give you a headache run down... and let you live a day in my head and body...

For over 10 years I've had to wake up every single morning feeling like I've had a hangover, except I don't drink... and that headache never goes away. (on a scale of 1-10, its always somewhere between a 2-4) and I have it all day, just this dull, achy, hangovery, pissed off brain, hangover headache... and then I go to bed with it. Actually... That started just after I graduated highschool, which was 1999. So somewhere around 14-15years. Awesome huh?

Then I get my SUPER FUN body stopping, paralyzing, "fainting goat-esque" Chiari headaches. Let me describe these to you. These bad boys can just come out of no where, OR, they come because I'm doing something I shouldn't be *sarcasm*... like LAUGHING, sneezing, yawning, coughing, bending down to tie my shoe, picking up my daughter, lifting more than 1 gallon of milk at a time,... throwing up, (OVERSHARE TIME!) having sex, pooping... or doing anything that may cause straining... oh .. yelling at a concert. BAD IDEA.

Here's what it feels like: Take your hands and put them up and over the top of your head, so you're protecting your head with your forearms (like you're getting your ass kicked in a hockey fight) and your finger tips are resting in the little ridge on the back of your head)

I had to search for the perfect meaty head to display an occipital ridge for you properly. I hope you're all happy. Sorry mister in the picture from google. NOW, Imagine that you're fingers are realllly firmly dug into that ridge area on the back of your head. BETTER YET! IMAGINE A GIANT HAS DUG HIS FINGERS INTO IT! Now, imagine that giant slowly peeling the skin, and muscle off of your head from that ridge, back over the top of your head, back to your eyebrows, like your a big meaty human orange. Don't throw up... You cant, because not only do you experience this pain, but at the SAME exact time you feel this, your cerebellum is being squished by your skull and C1 Vertebrae and cerebral spinal fluid isn't moving, so you're sort of paralyzed for anywhere from 20 seconds to 2 minutes. ... (This is why I had my Chiari Decompression Surgery.)

But this decompression didn't completely stop the headaches, it just reduced the frequency, from around 30-40 of these headaches a day, to about 3-10ish...

AND THEN...
I still have migraines...
more often now than before... oh joy of joys.




and then Lastly now I have the Intracranial Pressure headaches. The ones that feel like there is a car parked on top of my head...

So, to kind of feel what this feels like, Close your eyes... well, not now, because then you can't read, so READ all of this, and then do it. I'll tell you when you can close your eyes. Take your hands and cup them over both ears so that everything sounds REAL muffled., and then PUSH on the sides of your head as HARD as possible. Now, tuck your chin in toward your chest, and pull your neck back toward your spine at the same time so that there is a very tense and uncomfortable pressure in the back of your head and neck, as well as clench your jaw.... now puff out your cheeks so they are as full of air as you can make them. NOW close your eyes as tight as possible. Hold that all for as long as you can. Go ahead, I'll wait. Feels RIDICULOUSLY uncomfortable, right? Like there is pain, pressure, discomfort... all rolled into one big crap ball?? TADA! That's pretty much the feeling I've had every day for the last month+... but add onto that the feeling of my pulse in my ears and behind my eyes... and sometimes IN my teeth. Its enough to drive you batshit.



I don't want anyone's sympathy....That's not what this was about. To those of you who have asked, THAT is what I have been living with, day in and day out. I appreciate your concern. Everyone who's said, suck it up, it's "just a headache" can kiss the most rotund area on my posterior. I'll mark it with a big red X. :-)

I hope this has been enlightening for all of you, and I appreciate you all taking the time to read!!!

... I made a gofundme for my medical bills / bills

Its gotten to that point already...

Kristen's GoFundMe Page

Here is the text, copied from the page:

In early October (2014, this past October) I was diagnosed with Intracranial Hypertension (also known as Pseudotumor Cerebri). Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. I started having blinding, debilatating headaches, pounding that would sync up with my heartbeat/pulse in my ears and behind my eyes and even my teeth feel like they have a pulse, with extreme nausea. I've had multiple Emergency Room visits, MRIs, CatScans, Doctors appointments (both primary care and Neurological) and we're still trying to find the best way to treat this. 
I had a lumbar puncture done to relieve pressure, but then developed a spinal fluid leak that left me, again, in the ER, unable to move, stand, vomiting, hearing loss... and blood patches were done, (1st failed, 2nd attempt failed, then the 3rd "try" was finally a success and I had relief from the "spinal" headache that was caused from the leak, but within 48 hours, the original IIH/Pressure headache was back. 
I also have a condition called Chiari Malformation (a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.) as well as Ehlers Danlos Syndrome (The Hypermobility Type of EDS is characterized by loose joints and chronic joint pain.) & an existing issue with Chronic Migraines, all of which have not made this entire ordeal any more fun.  The doctors dont know when, or if, I'll be returning to work... or when/if my meds will start to work. (I'm already on Topamax, we added Diamox to "slow" the production of CSF... if that doesnt help, we may need to look into whether or not I'll need to have a shunt placed)

I have been out of work since October 10th. I have applied for Short Term Disability, but the insurance company has decided that they want to review over 2+ years of medical records, with more than 10+ doctors, specialists, ERs, hospitals, before they decide if they want to pay out. In the mean time, My husband is trying his best to support us, but losing my income and adding on a vast array of medical bills, copays, deductibles, Rx payments in place of my paycheck is causing a strain. As of Nov 18. 2014 when I spoke to the insurance co, they are estimating another 4-6 weeks before I could possibly see any sort of payment, "if I'm lucky" 

Its the 3 of us, my husband, myself and our 4 year old daughter. I'm worried about bills, the holidays, keeping our car (our only means of transportation), keeping my health insurance (a benefit that I have to repay to my employer, which I haven't been able to pay since I haven't received a check yet, and that amount is just adding up weekly and I fear they may stop by insurance soon)

I'm not looking for a miracle. I'm just looking for a way to stay a float and keep a roof over my daughters head until I'm either "not sick" or the insurance company wakes up. Bills are stacking up... and we ran out of savings really, really fast. 

Thanks for taking the time to read about me. :-) <3 p="">

what the hell is wrong in the stars...

I forgot that crying nonstop gives you the headache from hell. and its the "O.M.G. hold me I'm devastated by the world" cry.

The world was fine until like, 11am...
and then suddenly Tommy-Cat wasnt able to walk. We went to Massachusetts Veterinary Referral Hospital in Woburn for emergency car... the diagnosis:
"Feline Aortic Thromboembolism" (also known as Saddle Thrombus)
he also had a heart murmur, congestive heart failure, crackles and fluid in his lungs, his body temperature on his backend was significantly lower than his front.

I lost my furry little man.
We laid on the couch for skootches and he purred for the first time since everything started, which was now 4 hours. My husband and daughter gave hugs, pets and kisses and said goodbye.
We made him comfortable and he laid on my chest getting pet while the doctor took all the pain away... He purred the whole time. He actually looked like he was smiling... I held him the whole time. Mommy wasn't leaving him...

I'm going to miss him crawling on me in the middle of the night to lay on my chest and headbutt me to get love. The way he'd rub against Sean's goatee to let him know that he loved him. He licked my forehead last week when I was home with the spinal headache and laid with me nonstop. I needed him as bad as he needed me...

Fioriet, Flexeril... nothing is helping my head pain. i need to get a referral to a pain clinic.

I'm just at a loss tight now...

... One hell of a hiatus...

... I've been missing for... Years? 

Originally, this blog started out as a way to document my pregnancy with Chiari Malformation & Fibromyalgia... but honestly, it was uneventful. 
For those of you tuning in late, I have Arnold Chiari Malformation (a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.) and I expected it to cause all sorts of horrendous issues with my pregnancy with Ashlyn (Who's now 4 and a half, by the way...) 
it didn't. My pregnancy was pretty uneventful, except for the gestational diabetes and being induced twice. She's energetic, happy, healthy, smart and so far, has shown no signs of Chiari (thank goddess.) 

What else has happened since... 2011... 
Still blissfully married. (since 2008!) Been working at a pretty spiffy warehouse/trucking/logistics company since August 2012. Back in School.. Got my certificate in Substance Abuse Counseling and now I'm working on my Associates in Accounting. 

What else... Oh ya... They keep diagnosing me with more medical maladies, which is why I've decided to start blogging again. 

Let's see what we've got going on now (complete with links!):

• Chiari Malformation - Had decompression surgery on 01/13/2009 - Suboccipital Craniectomy with C1 laminectomy, brainstem decompression and a Duraplasty - I asked them to take pictures, even offered up my camera, they weren't able to, or else those would be here! 
• Fibromyalgia
• Gastroesophageal reflux disease (G.E.R.D.)
• Gastric Polyps
• Depression 
• Dermatillomania
• I.B.S. (Irritable Bowel Syndrome)
• Hiatal Hernia
• Spina Bifida Occulta
• Vocal Chord Disfunction
• Chronic Migraines (complete with aura and even vomiting! yay!)
• Raynaud's 
• Ehlers Danlos Syndrome - Type 3, Hypermobility (E.D.S.)
• Intracranial Hypertension (also known as Pseudotumor cerebri)

Craziness, huh? 
The last 2, E.D.S. and the I.H. have been in October/November of this year. It sucks, I won't lie, but the E.D.S. diagnoses finally explains a lot about the all over pain and joint pain I live with... and the I.H. has been... something. I've been at the emergency room so much the past month that the nurses actually KNOW me know. I've had a lumbar puncture to relieve the pressure (yes, it helped, but I had a cerebral spinal fluid leak after, resulting in horrific spinal headaches that landed me back in the E.R. with the inability to move properly, stand, hearing loss, vomiting, and resulted in 1 failed blood patch, a failed attempt at another blood patch, and then the 2nd blood patch that FINALLY resolved the leak, but now the pressure is back in my head. *sigh*
4 large needles shoved into my spine... I still cant stand up properly/move properly from back pain... but HOPEFULLY that will resolve soon. I do NOT recommend spinals/Lumbar punctures (Especially if you're a Chiarian... ugh)

We're going to start Diamox tomorrow to try to regulate the pressure and slow down the production of spinal fluid...  (Diamox user review for I.H.) I'm already on Topamax, which is used secondary if Diamox doesnt work, and I've been on that for years on/off... so we'll see how I do with the Diamox. Weight loss is another option... if it doesn't work then shunting is the last resort, and I'd really prefer to not have a shunt. 

So after 5+ years of feeling pretty damn good, the last few months have gone down hill... 
I had to apply for Short Term Disability. Hopefully I'll have a determination on that sooner rather than later... because its been weeks since I worked, and there is NO money tree in this yard. I actually had to withdraw from one of my classes because I missed a class 4 consecutive weeks because of E.R., hospital admittance's, recovery... after talking to advising and financial aid we made the decision to try to just keep my classes online for the rest of this semester and only online next semester. I never thought I'd get to a point where I'd let being sick kick my ass again. 

As crappy as it's been, its not all bad. I'm fortunate that I have an amazing husband and daughter... my sister, mom, dad, friends... all astounding. I'm alive, I still wake up every day. I'm above ground and breathing so I'm golden. I get hugs and kisses from the sweetest little squish in the world... so I'm pretty damn lucky overall. Plus I have a team of doctors who I really think are pulling to try to help me this time, and they really listen to me when I talk and dont just try to shove prescriptions at me for pain killers to shut me up... which is good, because I really dont need that in my life. 

Even though I have no idea how things are going to go, I still went ahead and signed up for the American Foundation for Suicide Prevention OUT OF THE DARKNESS Overnight Walk. << Click this link to view my page to sponsor me >> I'm hoping that by June 2015 I'll be better, because I'm planning on walking 18 miles from Dusk until Dawn to raise awareness for depression and suicide prevention. I struggle, I've lost loved ones... and I know I'll continue to struggle, because living in this much physical pain is emotionally draining and takes a toll on you. 

So I guess we'll see how this goes... I guess the blog about Kristen's Brain Baby is now going to be my bitch blog and a place to educate... 

Ashy and I ... She's so big now!!

been a LONG time.

http://apps.facebook.com/contestshq/contests/84909/voteable_entries/15440071?ogn=facebook

So, I'm rarely on Blogger anymore...
I'm on FB all the time. Baby keeps me busy..

If you could take a sec (if you have a FB) to add me, that would rock!
http://www.facebook.com/ksimonelli

Plus... if you could VOTE for my essay, that would rock too.
I'm trying to win a nursery shopping spree to get Ashlyn everything she wants/needs/deserves.
With her 1st birthday in 3 weeks, it would be the BEST gift anyone could get her... :)
Only need to vote once. Voting ends 2/9/11


http://apps.facebook.com/contestshq/contests/84909/voteable_entries/15440071?ogn=facebook

Shamrocks!

Happy St. Patrick's Day...
Here's to lying, stealing, and cheating!
May you lie to save a friend;
May you steal the heart of the one you love;
and may you cheat death.

Ashlyn is here!!!

It's been a long few days, but I thought I'd take a second to announce that Ashlyn Niamh Simonelli is here, and gorgeous.

Ashlyn was born on Friday, February 26th 2010 @ 6:28pm. 20inches long, 9lbs 1ounce. Apgar Scores were both 9. She was born by a c-section.

Tuesday 2/23 we went to the hospital for induction at 7:30am. Got hooked up to machines, monitors and pitocin... I started out at 1cm dilated, 90% effaced, -1 station, and cervix being posterior. After about 6 hours of pit I started having frequent strong contractions. (About a 5/6 on a scale of 1-10). After 8 hours, and no change, we shut off the pitocin and inserted cervidil... Next morning at 7am, STILL no change. Tried a 2nd round of pitocin...
After NO change again by 5pm, we were discharged home, told to rest, relax, walk (Try what ever we wanted to that could start up labor), and come back on Friday 2/26.

Did chores around the house on Thursday and just enjoyed the time with Sean. Friday morning, headed to the hospital.

7:30am arrived, 8am totally hooked to monitors, IV and pitocin. Watched TV all day... played Travel Scrabble. At 5pm, STILL 1cm dilated, 90% effaced, -1 station, and cervix posterior. Opted for C-Section. (I had gestational diabetes and a Chiari Malformation).

Was instantly set up for the CS. I was in the OR by 6pm. I actually really, REALLY enjoyed the Spinal Block, since I've had SPD since 16weeks, and my hips and backs felt like they were going to break. It was the 1st time I WASN'T in pain in forever. I didn't get nauseous, or really even feel any tugging or pulling. Sean came in wearing his SUPER SEXY Hazmat suit (the white suit) about 6:15pm or so, and held my hand and we were just talking, almost like it was a regular night and we were watching TV. Neither one of us cried when we heard Ashlyn cry... we just stared at one another like, "OH CRAP, IS THAT NOISE OURS?!"... And my OB announced she weighs 9pounds 1ounce, and she was still floating around organizing my organs... no where near descending into the pelvis, and she was in NO hurry to make an appearance on her own.

I was back in my room by 7pm, and Sean and Ashlyn were there. She didn't need oxygen, or anything. Bright, Alert and Gorgeous. We're so in love I don't know what to do with myself.

We stayed in the Maternity ward from Saturday morning until Tuesday around noon (The ward was full after I delivered so we slept in the L&D room). I thoroughly enjoyed the rooming in, and having Sean there. (as well as the room service for both of us... what ever/when ever (that was on the menu from 6:30 to 6:30). We're pumping and supplementing. Ash has a terrible time latching, and gets so upset she turns purple and just about stops breathing. We met with 3 lactation consultants, and at least 8 nurses tried to help us. Ash's pediatrician also checked her, and her tongue web is REALLY short and she's having issues getting her tongue in a good position to latch. He sees NO reason to cut it until there are massive issues going forward. So long as I have skin to skin contact and I can give her expressed Breast Milk, then I'm happy. My tongue web and Sean's are both short, and we were both formula fed (Sean's adopted, and I had latching issues too).

Being home has been hard... there are no nurses to offer to help! Maternal instinct has kicked in, and I've learned and done things I never thought I could. (like jumping out of bed about 24hours after having a c-section because the baby cried and Sean was in the bathroom. I didn't even REALIZE I was in horrible pain until I sat back down!)
She is an awesome little person. Gorgeous as all get out, and just a cuddle bug. She HATES dirty Diapers. the SECOND she poops or pees she cries, until you take it off her.... then she stops. Happy clean baby. and she just wants you to hold her and talk to her.

This is the most amazing thing to ever happen in my life. I don't even know how to really put it all into words... I'm so in love.

Ashlyn Niamh was born Friday 2/26/10 @ 6:28pm by c-section. 20inches long, 9lbs 1oz. absolutely perfect and gorgeous.

... if at 1st you dont succeed....

blaaah.

Today is 2/26/10. my due date. We went in for an induction on Tuesday, 2/23/10 @ 730am. Pitocin for 8 hours, Cervidil that night, then 9 hours of Pitocin on Wednesday.... I was staying 1cm dilated, -1 station, 90% effaced and cervix was posterior...

They sent me home at 6pm Wednesday.

We're leaving in about 20mins for round 2 of the induction. Because of my Chiari and the Gestational Diabetes, she's coming out today one way or another. If I'm not making progress by mid-afternoon, then Ash will be showing up by C-section.

the Pitocin contractions got bad toward the end of Wednesday. like... a 6-7 on a scale of 1-10. I'm NOT Looking forward to today. I've been taking EPO for over 3 weeks... orally and vaginally, so I'm hopeful maybe TODAY something will happen on it's own.

She's LOW. LOOOWWWWW. Like, I feel like I have to poop a LOT... but I don't. and I can't walk like a human anymore. ha.

Fingers crossed.... fingers crossed....

38weeks, 5 days.

Had a nonstress test and an exam today...

STILL less than 1cm dilated, 0% effaced, Cervix is high and not cooperating... and Ashlyn is floating around not wanting to fall into my pelvis...

I had a little protein in my urine, and trace glucose... blah. My blood pressure is good though.

We scheduled an induction for Tuesday 2/23 - 7:30am. Because of the Gestational Diabetes, and my Chiari, we want to try to get her out with little issue. If hours go by with no progress, we'll end up with a C-Section, and I have to be honest, I'm ok with it. So long as she's healthy, I'm happy. Some Chiari patients can't push w/out passing out, so it's what's safest for us.

Sean is going to start his Daddy Vacation as of Monday. He'll finish out this week, have the weekend, and then take of Monday to help get the house cleaned and set... then he'll stay w/me at the hospital. His work said if he needs more time, to please let them know and take it. (He only has 7 or 8 paid vacation days available, but he can take what ever time he needs unpaid)

I hope my unemployment determination comes in by then... it would be awesome to have it approved and retro back to 1/15 to cover bills and stuff and keep us floating. *fingers crossed*

I need some rest... I'm so incredibly exhausted...

hmmmm

38weeks, 4days

I know it doesn't mean a whole lot of anything... but I just lost my mucus plug. (Gross shit huh?)

eh

37Weeks, 5Days...

I'm home from my NST, Ultrasound and Exam...

Ashlyn is estimating at 8lbs 2ounces. Her head is measuring approx 34CM. (according to Sean, I wasn't looking at that.... I was looking at the fact it showed 40W3D at the bottom of the screen)

Her heart rate was from 125 to 160 if she was moving..

Me on the other hand... I am less than 1CM dilated, not effaced, my cervix is still really high, and Ashlyn is still floating around, and not "engaged" at all...

There are some concerns about the Gestational Diabetes and how her size is advancing. 4 weeks ago she was in the 67.8th Percentile... Today she was at the 81st Percentile.

I'm hoping SOMETHING happens between now and Wednesday. If not, there is a good chance they are going to Schedule me for a C-Section between 39 to 39.5 weeks.

My biggest concern is that she comes out healthy and perfect... I don't care HOW she gets into the world at this point, as long as it's safely...

Maybe if I shovel the "Snow of Doom" that's hitting Massachusetts today, I can somehow put myself into Labor...

Hmm.. oh well!

Well, I have just over a month until my due day...

Yesterday was a Nonstress Test, Ultrasound and exam.
Baby is active. Heart Rate 144bpm. She's estimating at 5lbs 14ounces.
I had a little protein in my urine, and my blood pressure was a little high. We're going to keep an eye on that.
All in all things are good on the Ashlyn front. Next Ultrasound is 2/10/10, and that will determine when I'm being induced. That's at just about 38 weeks, and if I dont go into labor on my own by then, we'll schedule an induction. (just because of the Gestational Diabetes and stuff)



in other news...
Got a call at 9:30am. From HR @ work. I've been let go. Apparently doctors notes, hospital notes, and all that jazz don't cut it for pregnancy and pre-existing conditions since I'm not covered under FMLA. Oh well. I'll call the Massachusetts Unemployment office tomorrow and open a claim. HR was like, 75% sure I'd get approved, and the other 25% was a maybe ya, maybe no. Eh. FINGERS CROSSED.

So now I KNOW I'm not going to find another job between now and labor. So I really am hoping on unemployment. In the mean time, I'm not going to stress. I'm going to clean the shit out of the house. Like, Scrub TOP to BOTTOM. Today I've cleaned the floors, vacuumed, cleaned up the table, did dishes, cleaned the bathroom a bit, cleaned the ferrets cage (tonight they'll get baths and get their bedding washed)...
and I have a list of about 100000 other things to do. I NEED to get on the laundry. I wash and dry it, then it sits, new load, then sits... and sits, and before I know it there are 10 loads to put away. HA. I'll get better about that.

Ashlyn's stuff is starting to get set up. I cleaned out the crib (we set it up a while ago, but it became a dumping ground for shit)... Sean and I played with the car seat last night for install lessons. All her clothes and stuff we have are cleaned and folded, and I gave her a spot in the closet for her things. The baby shower is on January 31st, and then I need to get all that stuff cleaned, organized and put away. (Kimma sent out the invitations, but forgot to put where we're registered. It's at Target, Babies R Us, and Walmart. It's under Kristen & Sean Simonelli.) I'm really, REALLLLY excited about the shower, and our families FINALLY Meeting. (together 5 years and our families haven't met... and we're MARRIED!)

well... I think it's time for a nap, and more cleaning, then get Sean at work! *yawn*

Happy Anniversary

Tomorrow is my 1 year anniversary of my Chiari Decompression surgery. I can't believe it's been a year since there was finally a light at the end of the tunnel.
I still can't thank Dr. VanHorne for giving me my life back. This past year has been the longest amount of time in over 15 years I wasn't in blinding pain.
I never thought it was possible to live with out being in that much pain every day, and I still wake up and wait for the headaches, the pain, the paralysis to set it. ... and they don't.
I may not be running to the goals I set, but I can walk there, and I'm not in a wheel chair...

Thank you so much everyone that helped me in my recovery.?