"We Can't Get Too Close"...

So...The most amazing thing happened on the way to the forum :)

NBC's "Grey's Anatomy" episode was centered around a couple who's unborn baby was suspected to have a diagnosis of OI Type II, one of the most fatal mutations that anyone can have. Statistically, most babies born with TII don't live more than a few hours after birth, sometimes a bit longer. This mutation consists of severely underdeveloped lungs, low birth weight, airway & respiratory problem almost no collagen & other health issues that can be irreparable. The couple decided it was in the best interest of the child to terminate the pregnancy. Many people of the OI Community weren't thrilled about the manor the news was delivered. Nor were they happy about the ending. For the past few episodes they ran this subject & I tweeted the show with Haley Jean's picture. I wanted to show that there is life beyond the diagnosis & in some cases OI isn't a death sentence....I got a RT from the show!! It was so exciting...I could barely contain myself. So many people RT, favorited & followed me back. I liked the idea of spreading awareness.

"We can't get too close" was a line from the show that will probably stick with me always. My parents faced this very potential option, told by medical officials to abstain from getting attached. Not much info was available in the 80's so it was a waiting game. This episode hit home for many people living with OI or somehow associated with it. That conversation, the tone, anxiety....The harsh truth of what is to come or what's to be is so heart-wrenching. Because I have Type III, the likelihood of the child having the same mutation was 50/50. While there were complications to be expected, none were like Type II. Many ask me how did I do it, how do I manage..My answer is always the same....I allowed Him to direct my footsteps, included Him in all of my decisions &  It was by God's grace that He carried us through the midst of the storm...

My goal is to tell others faced with this devastating decision that with God there IS life beyond the diagnosis...:)

Don't Forget...

A quick reminder...

http://oicandoanything.tumblr.com/

http://www.gofundme.com/6p5vb0

https://www.facebook.com/HoorayForHaleyJean?ref=aymt_homepage_panel

Memory Lane...

Here's yet another short post. Just sitting at Haley Jean's bedside & thinking back to our first ER visit at this hospital. We're even in the same room as before.... She had just been discharged from the NICU after 6 months. Not even 24 hrs went by before we were heading back in. She was having trouble acclimating to an environment outside of the hospital:  Respiratory distress. It was pretty scary. Everything I was taught in training in preparation for her discharge seemed to run through my mind like two -way traffic. I'm so thankful for those rigorous weeks of training. It prepared me for such a time as that & I'm grateful for all those who invested the time it took to help me get ready to finish this journey home: )

In the meantime, here's a couple links that should tickle your fancy :)

https://www.facebook.com/HoorayForHaleyJean?ref=aymt_homepage_panel

http://www.gofundme.com/6p5vb0

Haley Jean's Mom....

Greetings!!! Just a quick post tonight as I"m attempting my first try at Pinning my blog to Pintrest. Gonna be exciting!! After two weeks of antibiotic treatments, tacardic & febrile episodes we're still in the PICU. Again, what a way to ring in the New Year :( .....However it's been a productive couple weeks so I can't complain. Had a job interview right smack middle of her extubation....Talk about the case of the nerves..It's very challenging to balance & prioritize, I have no clue how I do it...I just do it...Anyhow, we were very close to a discharge this morning but with the fevers & tachacardic spats we can't risk any setbacks. I guess we'll look at it as a mini vacation....While she's here she can rest up under great observation & wonderful care. My kiddo is a trooper. Under the circumstance she's shown nothing but faith & resilience. It's me who's full of anxiety & a little fear. At any rate I hope to get some rest on this wrestling mat they call a bed.....lol..Oh the turmoil my back goes through when slumming in the hospital...It's not comfortable sleeping in a non-reclining recliner, or a 1 inch thin mattress. If you don't expect a week of back pain after that torture you're crazy!!! Sorry for the short post tonight. Not feeling quite myself this evening. The cold really does a number on my bones & since I've been sleeping here every other night I feel like a zombie. An aching zombie....Ugh! Tomorrow a hot bath will help with the swelling in my legs,ankles & feet as well as the throbbing in my side, that'll keep me going a few hours. Besides, watching my little girl grow & heal is what keeps my mind off the pain, it's the best medicine in the world :)

Evolution...

Hello everyone!! Well today is my 34th Birthday!! Happy Birthday to meeeeeeeeeeee!! Not a lot of people know that my birthday is on Christmas Eve. I kinda like it that way because when they find out people coo & swoon all over me..LOL..Idk, I guess I'm a little shy & plus I don't like attention. But at any rate I guess I should welcome the oooh's & ahhhh's considering how far I've come. Oh before I forget, I share a birthday with my big sis Angela....Yup!! More ooooh's & ahhhh's..lol....Don't worry, we aren't twins, we were born exactly 5 years apart. How cooooooool is that??!!!! For years we've wondered just how did my parents not only have one kid on Christmas Eve, but another one 5 yrs later?? Granted that question is rhetorical (spare me the visual) Besides I'm convinced I came here my Stork!! .....Haha!! So,  This year our sisters planned what was intended to be a surprise party for us at this local pub. The night was full of chicken wing-dings, deli sandwiches, unlimited marguritias, tequilla shots & a DJ that was full of energy :) The evening was topped off with us splitting $50 from 3 random dudes as a birthday gift. Great!! Now Haley Jean can get top-of-the-line diapers: Huggies!!! It was a wonderful night. Since our birthday falls on the Eve of the most holy night of the year, typically we stay in & relax, whether it's with dinner & a movie & preparing for Christmas day we always chill together. Seriously this year I had a hot date with my sofa, robe, remote & a glass of wine.....Don't forget my ZuZu in tow :)

I was about 16 weeks here :)

Randomness with my Capricorn chum :)

Partying like some Rockstars :)

 I named this Evolution because I wanted to talk briefly about how far I've come & where' I've been . AS you know, life for me wasn't easy & I certainly didn't have much optimism from the medical community. It wasn't their fault, I mean it was the mid 80's & not much medical information was available during this time. Hell, they'd lean on my parents for info..lol..I was born all fratured up like a jigsaw puzzle. Came home all wrapped up like a mummy...I had my first rodding surgery at the age of 5-6 ish...Both femurs & tib-fibs were done. Within a year or less my tibias began to curve. My femurs were fine, it wasn't until years later we found out that I was given the wrong type of rods in my lower legs. I had the kind that DID'NT extend as I grew, considering I was at the age where I was still growing. I quickly outgrew them & they curved as I learned to bare weight, with the rod in my left leg eventually migrating 1inch out. I was 13. Wasn't until I was 20 when I found a doctor who was willing to help me. He not only removed the bad rods but he completely straightened them. I believe that was the begining of my transformation into womanhood. When you look good on the outside, you feel good on the inside. Now that doesn't mean I got the surgery specifically  for cosmetic reasons, it was to improve my quality of life. It did just that & more. My phyiscal appearance changed drastically so the boost in self esteem kinda tagged along for good measure. In fact he wasn't gonna do the surgery if that was my main concern. But I didn't know that until after the consultation. That solidified my decision to allow him to do it. Even though I was his first OI case of it's kind, I knew he was placed in our lives for a reason. It was a real gamble & I trusted him with all that I had. For years no one would touch me, no doctor would even try to at least point me in the direction of someone else who could potentially help me. For years I kept hearing "No, sorry I'm not familiar with OI. There's nothing that can be done to fix it" or " I can't help your emotional state, that's not what theses surgeries are for"....PRICKS!!!!!!!!!! 10 minutes into the consultation I already knew he was the 'One'. It was his disposition, his warmth & kindred spirit that convinced me. I knew our search was over & soon we were to see the fruits of our labor. By 'We' I mean my mother. He had us both sold & we grew a friendship that was strong. This is probably why I'm so brazen & bold when it comes to Haley Jean's care. 'No' isn't an option, just doesn't work for us. If there isn't a way it's my duty to find one.

From a girl to a woman :)

So as you can see, Birthdays are very special to me. For a couple reasons: to reflect on what my life was supposed to have been according to science & to see where I am today. Not to forget that I share this day with the most wonderful person one can ever imagine....My Sister. In a house of 7 children; two sharing a Christmas Eve birthday, one with special needs, we never wanted for anything. We were loved equally, unconditionally & that is a blessing in itself. Truly it's by His Grace & Hand that I am where I am today....Together with my family, happy healthy & whole :)

By the way...;)

https://www.facebook.com/HoorayForHaleyJean/

http://www.audacitymagazine.com/mom-and-baby-no-regrets/

They Call it Square 1....

Hey......Guess where I am....The PICU!! After our Christmas dinner was cut short I ended up bringing her to the ER. And what's scarier, I was forced to call 911 & they take you to the nearest hospital. She's been here before, they kinda know her but honestly not as well as the other place. It's not their fault, no harm done. I'm subconsciously "trained" to notice things that are out of the ordinary. And while I hear quite often "you know your baby best" there's still not enough training in the world that will keep you calm while on the phone with a medic. I was cool though. Amidst the circumstances I knew I couldn't blow my top while she was in distress. With the phone balanced between my left ear & shoulder, one hand adjusting the pulse ox probe to get a SAT, ordering my niece around & the other hand shaking her for a response, the fear was setting in. All the while reporting to the EMT what had just happened. I reported her being febrile of a 105 axillary &  heartrate of 240 ish...I was screaming on the inside & keeping a level head on the outside. I mean, what was screaming ouloud gonna do?? I like productivity, getting things done, ya know, cry later on my own time. Right now, every second counted and I made a conscious effort to see that through. So it's the usual....dehydration, rhinovirus, enterovirus & a possible infection.  Looks like I'll be ringing in the New Year at a bedside. Although it's not the best place to be, as long as we're together it's all.....ALL that matters to me. I could care less about being anywhere else in the world. Right here is what matters, it's what counts.

The first 24 hours are probably the hardest to cope with. Waiting for a change or improvement in labs can seem like an eternity. The fear within you grows & taunts your dreams & thoughts. It wraps you in itself taking advantage of your vulnerability. The flutters in your stomach outweigh the hunger you should be feeling considering practically half a day has passed & you still haven't eaten. The sleepless nights & dried eyes become part of you. Sitting at a bedside watching the monitors as the bells scare the crap out of you......Being pulled away by your family begging you to go home, eat, sleep & change clothes because it's been 3 days. I can't tell you just how many of those nights I've encountered. I know there's a rainbow at the end of each tunnel. We'll be back home in no time watching Sesame Street & playing Pat-a-Cake. Cuddling with a book after a warm bath & fresh PJ's. That's my rainbow. It's bright rays of color are there, waiting for us. Just when we make great progress we end up a few steps back to square 1. The hospital stays really set her back but I'm trusting in Him that we'll get back on track....Where we left off.

Rarely do I give myself the chance to wallow in self pity, seriously what does that help??  Remember...Productivity! However that humanistic side of us kicks in the floodgates of tears, pity, anger & hostility become the forefront. Some time ago, someone told me that my baby can feel my pain. So because she's already going through it I try to find the joy in my heart when I'm in her presence. Finding a smile in the midst of pain & hurt is like riffling through a pile of laundry for that favorite blouse. I can't let this distraction dictate my faith. Day 2 is over, talk to you soon....:)

Defeat is Such a Dirty Word....

Greetings friends, family & strangers....It's been a month since my last post & of course when I'm away for long stretches at a time you know life has bombarded me. Haley Jean & I are doing wonderful! We've had a couple quick hospital visits within 2 weeks apart due to unexplained febrile spikes. Since trying to wean off one of many meds we had issues with withdrawls. She became agitated, sleep-less & very febrile. Labs, cultures, fluids & antibiotics drew one conclusion: Withdrawls. The week or so of these spells were rather difficult more so for myself in terms of her restless nights & my inability to sooth her. All she wanted was to lay in my arms....for hours! Whewwwwww....Working on maybe a few hours of sleep is definately leaving a mark. If one more person asks me...."Hey, are you alright? Ya look tired"..I'll probably scream..Haha!! I'm real happy we were able to resolve it. Now she's back to her vibrant & bubbly self :)

A year ago this week Haley Jean had severe dehydration & became septic. It attacked her lungs & she needed to be intubated a few days & we spent 16 days in the NICU. Got home just days before Christmas. Having her home for the holiday & my Birthday were THE BEST GIFTS I've ever received in my existence. Looking back on what's happened in the past opens up doors of fear bad thoughts of repetition. I find myself staring at her for minutes at a time. I become entranced in my thinking, in my spirit & mind in an attempt to stay a few steps ahead to avoid history repeating itself. While she's been dehydrated before, I know now what to look for & so I watch.....I hover. Keeping her lungs "dry" with diuretics & lasix are equally, if not more, important than keeping her body hydrated. It's a very....VERY thin line. When she trips, she falls & the threshold of her illness progressing is quite short. I've utilized those scary times as tools in my toolbelt. I've learned to listen with a stethascope to check for clarity in the lungs & how to measure her heart rate manually....I keep discharge papers, clinic follow-up summaries & notes of past visits filed away in hopes of knowing & understanding what's happened, how to fix it & how to avoid things happening in the future. Just when I thought I've got a handle on it, something else jumps up & catches me off guard. While defeat isn't an option, it's certainly an ugly feeling. Defeat.....That word & I have a serious love/hate relationship. Although I don't welcome it's presence, I don't cater to it either. It think that's what makes mother's [people] strong, it's that feeling that challenges you to the core & you can choose to let it beat you or rail against it. By shutting out the doubting chatters that haunt you at night, taking one day at a time & live in the now is how I chose to stand against it. You learn as life happens. You deal & move on...Don't dwell on it.

There's not a day that passes that I don't pray & ask for strength, guidance & leadership. In my own struggles I find the time & words to Thank Him in advance for vision, discernment & good health for my daughter. I must be doing something right :)

On another note...NBC's Grey's Anatomy aired their winter finale episode about a couple who's baby is suspected of having OI. Unfortuntatley many of my OI chums weren't doing a Dominique Dawes over the portrayal of it...OI is a sensitive subject for those who live with it whether it's the person themselves or a relative, it's not something people take lightly when portraying it's existence. Many felt there was no compassion from the physician regarding the diagnosis of the ultrasound, not to mention the lack of optimism of prognosis. From my personal experience with doctors, they aren't trained to be compassionate first & stern the next. I don't think it's intentional, they are trained to give you the cold hard facts... While we want them handed on a silver platter, that's just not ethical. Giving you their true medical opinion is their number one priority & think it's difficult for them at times to do that & be your friend. Hey, I've had my share of doctors who've lost their humanity along the way [not recently] absolutely no bedside manners. But that's life, everyone's not going to take your hand & gently lead the way down the Yellow Brick Road like we'd like them to, if anything you get kicked in the pants halfway down & a "Good Luck" gesture just to say hey at least I told them.....At any rate OI has gone to Hollywood!!! I'll take awareness any way I can. More exposure can lead to funding & research that may one day lead to a cure. I'm hopeful....very hopeful.