October 23rd, 2014: Making a difference and looking toward the future

I've always been one of those people who want to make a change... To make a difference... And as I look down at my body, I realize just how far I've come...

You see, I'm currently 38 weeks pregnant with my Rainbow... That's quite a change... Quite a difference... But I am still dealing with losses of my own... Losing two confirmed pregnancies and one suspected doesnt make things easy for me...

Looking toward the future I will always be reminded of the babies I lost... Jade... Christopher... Serenity... And in turn I will always be reminded of babies like Preston, Hunter, Connor and Benjamin... Silas, Joanna...

I wonder how many are lucky enough to have their rainbow... To have that monumental change in their life... How many can look to the future with smiles on their faces because they have a rainbow, and change, to look forward to...

Its funny how without people there would be no change... Without people there would be no life lessons learned, no little miracles called children... No one would experience things good or bad... Its people, whether you've had good experiences or bad, that make all the difference in the world...

My friend Cat wrote a blog post about survival... Oddly my life has been full of that... And unfortunately most of it hasnt been the positive type of survival... I once didnt see the point of looking toward the future, but because people were so derogatory I made up my mind to prove them wrong... Until my body started working against me...

When you meet me personally I seem... Aloof... My scarred past is easily visible and is often felt because I'm not social in the slightest... I DON'T like people... Much :D It takes a while of watching and observing before I'll interact with my surroundings, especially if those surroundings are people... Yet as I said its people that make a difference... Chris, Jade, Ben and Connor, Silas, Preston, Cat... Those beautiful souls have touched mine and made a difference. The support I get and have from Cat and so many others that are on the board that Cat and I frequent... I never in my life expected such understanding... Such love and acceptance... And from total strangers that I am now honored to call my friends and family...

Cat say's I've made a difference... Maybe I have... But the difference she and so many others have made in my life are the inspiration and driving force behind my desire to make a difference to the people who need it most. She honors her precious baby boy and spreads a bit of happiness and I want to help her.

Losing a child isnt easy... Losing more than one really fucking sucks (excuse the profanity). But those tiny people make an impact... Maybe not on everyone... But they certainly leave a mark.

September 28th, 2014: Music and facing the truth

Music is the talk of the soul... Or something like that... Music seems to be able to get things that you cant say out into the open... It can make you remember or help you forget... It can soothe or anger...

Lately I find that certain songs now make me face the truth... Just like a certain blog I read from time to time... One of my dear friends made this blog to share her son Preston, who she lost when he was 16 weeks old... He was a beautiful baby, full of smiles...

But I find that her blog has the nasty habit of making me face the truth when I read it sometimes... She never writes anything that's depressing, but her blog is good at that ya know? And I'm not mad that she has that ability at all, in fact I'm glad she's able to make me face the facts sometimes... Because if I didnt I'd forget... And I dont believe that there is such thing as a memory that's ok to forget... I dont want to forget Preston... I dont want to forget Jade, Chris and Serenity... I dont want to forget Benjamin and Connor. I dont wanna forget Vida, Jaylynn, Joanna, Ellie Sawyer, Silas and the countless others that have touched my life.

But just like with music that brings with it the ups and downs that you hold within your heart, I think it's a good thing not to dwell... The children live within our hearts and in a roundabout way keep us strong for those determined enough to ride the waves in the ocean of grief that we all experience when we lose a child... To come out on top is what they want, and so we struggle...

But every once and a while we have to face the truth. I'm glad that Cat's blog does that for me.

Sept. 3rd, 2014: Thoughts

So many thoughts going through my head... My bracelets, the PAIL quilt, the tree...
Isaac and Chris and Jade and Beanie...

What would things be like now? If Jade and Chris had stayed? I wonder about closure, and milestones... Why was nothing done to help me and Chris? Why, even after they new that I was having contractions, did they do nothing...

It's been a year now, and I still sometimes go to a dark place...

And FOR GODS SAKES WHY WONT ANYONE MENTION THEM?! See that's what gets me the most... We're not allowed to speak of our kids because they're dead... We're not allowed to show pictures because they dont look like babies... Because they have no fat on their bodies or they've retained water or they've got some other thing goin on... Its only ok to show babies that have fat on their bodies...

News flash: YOU LOOKED LIKE THAT TOO WHEN YOU WERE IN THE WOMB!

My family never speaks of Jade and Chris... I dont even feel comfortable speaking to my mom in depth about them... She denied they ever existed... And then when my sister spilled the beans a=she wants to act like nothing ever happened... She doesnt want to talk about them... No one mentions them... The only people I can really talk to that arent on BBC are Matt (Chris, Beanie and Isaac's dad) and his stepmom Angie.

Then theres fatal diagnoses that get under my skin.

And then there's the fact that being pregnant with Isaac makes me think so much of Chris... Is this what Chris would have done if he stayed put? What would he be like now? His due date was the day I conceived Isaac, Valentine's Day of this year... Its also me and Matt's anniversary... We've been together a year and so much has happened... But he is the only person to stand by my side through it all...

Not once did he say to take Chris's pic down... I remember one time I was pissed at him and was gonna move into the other room and he said no, and to put Chris's picture back where it belonged... Even though he's told me he's a little weirded out by the picture... I dont blame him though... I think had I not lost Chris and someone showed me a picture of their angel and it looked like Chris does, I'd be a little weirded out too.

Matt never tells me not to talk about Chris, or to 'get over it' and all the other stuff that people can say. He just hugs me and does some random stupid shit to make me laugh again and then tells me that its gonna be ok.

What I dont understand is why people seem to think that losing a child is- you know I dont even know the word for it. They downplay it like it's not big... Would you want us to downplay the death of a loved on who's been here years, or downplay the death of a beloved pet? I'm pretty sure you'd get pissed so why do it to us? Why downplay our child/children's death(s) like its nothing when it destroys our world just like losing that beloved pet would crash yours. Yeah, you learn to move on, and so do we, but you dont find us saying half the random bullshit that I hear others have said.

*sigh* Idk...

A year ago today... My full story

A year ago today my tiny perfect son Christopher Lee Justice was born. I had him in my bathroom at 1:10 am. He was 6in long and weighed 1.6oz.

A year ago today I was pregnant... Just like I am now, but the outcome was that instead of a take home baby, I got an angel instead...

I woke up to random spotting on my birthday last year... I'd discovered June of 2013 that I was pregnant and spent months getting the run around on getting pregnancy medicaid... I didnt find out until two weeks before all this went down that my medicaid never got turned off like I thought it did...

I got an OB consulation thingy set up for this day last year... I was blissful.. Feeling guilty at being 'ok' that Jade didnt make it I resolved to give this baby enough love for him and his big brother... But on my birthday everything changed.

I found myself in the er, worried that I was losing him... Matt (my SO) was exhausted from work the previous night... and I got checked by the people at Wishard... They said everything looked fine, and I remember them asking if I'd heard the heartbeat yet... I said no and they went and got a doppler... I heard my son's heartbeat at 167 bpm... So strong and so fast... I remember them giving me a pelvic exam and asking when my LMP was and being shocked when I told them it was May 7th... They kept acting like it was weird and whenever I'd ask why they were so surprised they never answered... I still remember the smile Matt had when he heard Chris's heartbeat... I'll never forget that look... The love and happiness in his eyes...

I would continue to spot on and off until the 26th, when I'd lose my mucus plug... I was at my housemate's mom's house for a pathfinder game and when I went to pee I noticed it... Again we went to the hospital, only to be told everything was fine. By that time my back was killing me... I never once realized that the 'growing pains' that I was having were in fact contractions... I'd been having them for two weeks now... They again seemed so surprised that my LMP was May 7th, and now I was beginning to get worried and frustrated... I knew the end was near but I was denid a cerclage, being told I didnt fit the guidelines... That you're not allowed a cerclage when you're having contractions... And yet they did nothing to stop them... They kept repeating that there was nothing they could do...

They sent me home and at around 9:30-9:45 my water broke... Luckily I was wearing a pad but I thought I'd peed myself. My back pain had reached an all time high so I took a shower with my SO and took a muscle relaxer and went to bed as he went to work...

I woke up to pee at around 1am and went to pee... I thought I had to suddenly poop so I pushed... And Chris's tiny feet and part of his cord popped out... I was in shock... I couldnt believe it was happening again... But gravity was working against me and he kept coming... All I could do was hold his tiny body as it slipped out of mine and make sure it didnt fall in the toilet... My son was born at 1:10 without ever taking a breath... I was definitely in shock... I asked Jake (a former housemate) to grab Matt's old phone and I called 911 saying I'd just miscarried... But Jake had no idea I was even pregnant...

They got here fairly quick. When they saw me holding Chris's tiny body the first words out of the first guy that entered was "I'm so sorry". As they were wheeling me out the door I told Jake to call Matt... I'd given him my phone that night... Jake told him to meet me at wishard and when he handed me the phone Matt's first sentence was "Did you miscarry?" I said yes and he said he was on his way.

He met us there and when he walked in there were tears in his eyes and a sadness I never want to see again on his face... He cried the tears that wouldnt come for me just yet... The people there kept asking if I was ok and I kept saying I'm in shock right now, the tears will come later... Mat tried to hold it together but he he was having trouble... The staff were nice and treated my child like a child... I was allowed to keep him with me. I hadnt delivered the placenta and they said it was best not to go home until I did...

I didnt want surgery so I opted for meds to help... But they didnt work... I spent 12 hrs trying to deliver Chris's placenta and had passed some really large clots... I ended up needing an emergency D&C to remove the placenta... I nearly needed a blood trasfusion and they filled me with three litres of fluid before they operated. When they said they had to do one I was soo afraid of being put to sleep... All I remember is thinking what would happen to Matt... I begged god not to let me fall asleep... Because of I did I knew I wouldnt wake up... And I couldnt do that to Matt...

I begged them not to put me to sleep, and thonkfully they listened... They gave me some sort of med that they put into my spine... I wouldnt feel any pain but I'd feel pressure...

I remember they strapped me down for some reason... Hot from the morphine and itchy form the med they shot into my spine I started to dose... And each time I started slipping something started to itch really badly and I'd be jolted back into wakefullness...

The operation was quick and successful... And I'd made it through to come ack to my tiny child and the man that will one day be my husband... I was inobservation for an hour and kept overnight, and discharged the 28th of last year...

Since then the road had been long and hard... I was numb for a long long time... But Matt has been my rock, my constant support when everything fell to shreds around me... Even though I wanted him tested they dipped him in that formeldahyde solution thingy too quickly...

I'll never truely know whether he was a trisomy baby or if he was just a normal baby with an isolated instance of a single umbilical artery... I'll never truely know if it was that or if it was solely my body's immune system destroying his lifeline...

But even though each and every day I miss him terribly, and ache for something his weight to hold once more, I'm grateful to have had the little bit of time that I did have...

August 18, 2014: Honoring Angels and the Angel Wishing Tree

So on BabyCenter I created a thread... And in it I offered to make bracelets to honor lost babies...

You see, I'd been tormented by the fact I didn't know what to do to give back to the awesome people that had helped me cope with the loss of Christopher...

A dear friend of mine that I met on BBC (Babycenter) who wishes to remain anonymous has this amazing tree. She had started it as a wishing tree for her living daughter and then decided to include all of us moms (and possibly dads too) of angel babies...
She got a whole bunch of different color ribbons and made little leaf-like papers and wrote our babies names/nicknames on them and hung them on the tree... That selfless act not only floored me but made me wish ever so much harder for a way to repay her kindness...

I get to see all three of my babies in one spot here on earth... I may never get to hold them but to finally see them down here with me is the best feeling that only one who has gone through it will understand...

And so I thought and thought... Meanwhile a quilt was being made, a thread was made for dates that were significant to us, and then there's a thread to show off our photos or just tell our stories...

And finally, it was my turn... I crochet and one day I had the urge to look up how to make angel wings... And the rest fell into place.

I wasn't sure how much of a hit it would be, but it is definitely a hit, and I'm so honored and happy to finally be doing something to the many awesome people that helped me through my loss. I can never say the right words to say how much they and their angels have touched my life, but I'm hoping my bracelets will get it across.

July 15th, 2014: Mystery Diagnosis and My Own Realizations

Recently I've been watching Mystery Diagnosis. It's an old show that used to air on Discovery Health before Oprah bought it and turned it to OWN (The Oprah Winfry Network). WHY she couldnt make her own damn channel with all that money I'll never understand (but thats a different tangent, and it has nothing to do with the topic of my blog so I'm leaving it be :P).

Mystery Diagnosis is about rare medical diseases that next to no one knows about. There are all sorts of rare diseases, like PNH (Paroxymal Nocturnal Hemoglobinuria) which is potentially deadly if left untreated, PANDAS, which is an autoimmune disorder where the body's strep antibodies mistake your own neurons for the strep bacteria (you start to display tourettes and OCD behaviors), Maple Syrup Urine Disease where you body is unable to process two different amino acids and your urine smells like maple syrup. Ingesting those amino acids can be lethal. There are so, so many more and you can check them out on youtube.

There was one episode I watched on youtube. The video was called the boy who only hopped, where it showed his mystery diagnosis (PANDAS) and the diagnosis of a woman who had Autoimmune Progesterone Dermatitis... Which now leads me to the name of my post.

Thanks to an app called Fertility Friend I started tracking my cycles more in depth, and came to realize there is a pattern to my flare ups... My flare ups happen around the second half of my monthly cycles, which is when progesterone production spikes because you ovulate...

The flare ups are recreatable by exposing your body to the hormone, by intramuscular progesterone or a patch (which is what was used to solidify the lady's mystery diagnosis).

13 weeks gestation is when your baby's placenta is fully operational, and when your body starts producing progesterone rather than hcg. I started getting the progesterone shots at 13 weeks, and noticed that my eczema would flare horribly every time I got a new shot... Then I watched the PANDAS mystery diagnosis and it clicked... Because of the Fertility Friend app, I was made aware of the cycle in my flare ups... And then, it made me remember Chris... From 14w to when I lost him at 16w I had horrible eczema and had constant contractions that I was told was growing pains...

And now... My body had killed my son... My immune system killed my tiny child... A child that depended on me to keep him alive and safe... A child I felt I was ready to raise and to keep...It explained how I was able to get pregnant by taking Benadryl, both with Chris and with Isaac... Benadryl is an antihistamine, and represses your immune system... Reduces inflammation... I didnt have any Benadryl when I was pregnant with Chris... But I keep a constant supply now...

I'm at a loss for words really... My body, without medical help, will kill every child I conceive...

July 29th, 2014: Trying not to think about it... And failing miserably

So I ended up listening to an Eminem mix on YouTube... And one of the songs is "When I'm Gone". Once again I found myself in tears...

I've been trying not to think about my birthday. I've been trying not to think about the son I lost just last year... Trying not to think about the gaping hole that he left. Trying not to think of wanting to hold him or how if he was here he'd be almost a year...

But I'm failing miserably... My birthday... A time where I'm supposed to be happy and enjoying being pregnant with my son Isaac... But there's only trepidation as I inch ever so slowly toward that date... You see, my birthday is the first and only time I got to hear his heartbeat... And six days later I caught him as he came out of me when I went to go pee that morning...

The pain is still fresh. It still hurts like hell... I didn't get to see him smile, or hold him and tell him I love him. He never got to truly hear my voice like Isaac does, or feel my hand on his home like Isaac... He didn't get to take a breath on his birthday... His tiny little heart had stopped beating when my water broke, or he suffocated when the his umbilical cord hit air... I never saw his little chest move, never felt any of his little muscles move...

It's almost been a year... Last year, I was pregnant on my birthday, and happy... This year, I'll be pregnant on my birthday... But this time... I don't really know what to feel.