Robbed

Yep. We got robbed...quite a bit, and im trying not to get angry but sometimes it just gets under my skin.

We didnt get the best care @ the delivering hospital(no offense to the few people that cared)

Then our daughter was stolen from us.

Now im left with a mothers body and no baby...(still have that line but i don't mind that reminder so much!)

Hospital bills are outragous...she was at 3 different hospitals(so there were 2 transfers)...then each of the 3 hospitals you have the 3 different doctor bills which are separate.

We set up payment plans for the stack of bills weve acquired...come to find out they charge you $30 for each month its not paid in full. Seriously?!

I think that is sooo wrong. We didnt ask for this to happen.

So take 1 bill for instance...a $3000 bill if you pay $100/month...thats $900 they are making off of my unfortunate situation.

Such BS!

Totally feeling robbed and taken advantage of...

I suppose thats life :D

It's Final.

Well I finally had my oral surgery yesterday(wisdom teeth + 1) and let me tell you it was hell. I remember the doctor saying "youre going to start feeling really funny.." and I was out. Next thing im walking to a room and started crying. Yeah I felt pretty silly. I couldnt talk but tried to tell Ryon it was the beeping of the machines that was making me cry...not the pain(yet), because I was pretty numb. Before the surgery when they were hooking leads up to me, putting in the IV and checking my BP and pulse...I got pretty upset but held it in. The doctor also said "well youre beeping.." and I was said "whats that supposed to mean?"..."youre alive". I guess thats a good thing...

So yesterday pretty much sucked...and today its not much better. I have pain meds but they dont seem to completely make it go away...I suppose I need to give it time. I think ive heard that enough this year to last a lifetime!!

On another note:  We FINALLY got Bella's autopsy!! What a relief. We have been waiting for this letter for some time now. I have mixed feelings about it.

Backround:

22day old female born at full term from an outside hospital. Uneventful gestation and delivery with apgar scores of 8 and 9. About 15 hours after birth she was in respiratory distress. An echo showed normal heart with severe pulmonary hypertension. She was flown to uva and placed on ecmo for 3 days. She did not improve during her hospital stay despite maximal support. On 1/11/10 she had decreased oxygen saturations and lower bp despite increasing vasoactive medication. We as parents decided to redirect her care. At 1am on 1/12/10 the endotracheal tube was removed...and the autopsy says "the patient expired at 1:40am".

Ryon read the report aloud and all I kept hearing was "normal....normal....normal...." which of course made me cry. She was PERFECT except for this liiiitttle thing called ACD that has no cure. Well ok its not little...its huge when youre talking about your child's life.

ACD babies usually have other abnormalities. This is what the report said:

"Alveolar capillary dysplasia can be associated with other major structural abnormalities involving the cardiovascular, gastrointestinal, genitourinary, or musculoskeletal systems. In this particular case, no other abnormalities were present."

The report was 6 pages about how perfect she was...except for respiratory(acd/mpv).

Every case Ive read about, there seemed to be something else. So we were expecting the same...

I suppose this is good. Everything was done as it should have been. She didnt have any other problems and we didnt hurt her in the process(no brain bleeds from ecmo or digestive/colon problems because of the viagra etc). I guess whats still upsetting is she ONLY had this 1 issue...and it couldn't be fixed.

Hoping to hear from Dr. Sen soon so we can be a part of the study...to help find a cause & a cure.

Like a disease...

Thats how I'm feeling at the moment.

These moods are forever changing, and it's reeeaally getting annoying. I was in such a good mood for a couple days and it seemed like things were looking up and I was somewhat getting back to my old self. I had more energy and wasn't feeling soo sad anymore. I was also starting to actually be happy for people with babies. The jealousy feeling seemed to be easing up. SEEMED TO BE...but things arent always what they seem.

I guess I shouldnt get my hopes up too soon or think I could just go back to my old self. I need to realize things will never be what they were. Ive come to find that people look at you different when you lose a baby. It feels like Im a cancer. Its a pretty lonely and isolating feeling. Like I dont belong...

I feel like mothers with babies don't want to associate with me. I am their worst fear...like a disease they dont want to catch.

Hoping very soon I will have a healthy baby to call my own and will start to truely be happy for others and start to feel like I belong...

Published with Blogger-droid

http://jacksonville.com/news/metro/2010-06-01/story/boy-and-mom-who-unlocked-medical-mystery

An awesome article on ACD that made front page of the Florida Times Union! ACD Mom Diana is amazing---she presents to a genetics class in Florida to make more doctors aware of this deadly disease. Closer and closer to an answer & cure....

HELLO June...

Oh how I have been WAITING for you to arrive. I have been in an unusually good mood since you got here.

I get my wisdom teeth out in a few days...and I know it's going to SUCK but its got to be done so I'm not really nervous. Ya know, I don't get too nervous about stuff anymore...I feel like if I can push a 7lb 5.6oz baby with a rather large head out of my who-haa with no drugs, I CAN DO ANYTHING!! :) lol

Speaking of BABY...Bella would be SIX months old this month! June 21st to be exact. Ah...I try and try and try to picture what she would look like but its SO hard. Babies change SO much SO quick and theres so much we didn't get to see(smiles and eyes) It drives me crazy sometimes but I am slowly getting used to it. Things aren't SO painful anymore. I MISS her SOOO much...and as the days go on I get more and more anxious about having another baby. Lately when I go and see Bella, we talk about that a lot...maybe she will put in a good word with the man upstairs for a little sister, but we will take a little brother too as long as they are healthy! :D We also talked about how cool it would be to have multiples! Hey now, I'm not getting greedy...IM JUST SAYIN!{now is when the REAL waiting begins!...well, sort of}

Mine and Ryon's 1 year anniversary is June 22ND. It sounds so weird saying 1 year. We got engaged on our 5 year anniversary, we got married on our 6 year anniversary...and our 7 year anniversary is really our 1 year anniversary. So, its just you get married and forget about the 6 years you were together BEFORE??! I suppose its just a number, but I don't want to start over!! oh well.

**BTW: thank you to everyone who has written to let us know we are still thought of and those who continue to pray for us. It means more than you'll ever know :)

***4 1/2 month countdown until HAWAII!!!!

"Fly" Celine Dion

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless Journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace all one word
But hold this mem'ry bittersweet
Until we meet.

Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won't forget

Fly, fly little wing
Fly, where only angels sing
Fly away, the time is right
Go now, find the light.

busy busy busy

It seems like that's how things have been lately. I am ready for a break!!

Ryon's dad came out from CA to surprise Ryon for his birthday on May 14Th. He was supposed to get in at 730pm on the 13Th and we were going to surprise him at work...buut he got delayed, twice!(***lesson, always fly United!...he made the mistake of flying American lol) So he didn't get to our house until 130am! Ryon had came to bed already...and boy was he shocked to wake up and find his dad standing in our doorway, HA! wish I had my camera ready for that..and the "what the hell are you doing here!?" response. It was great. Friday we went to MiDeg and had a nice dinner with the three of us and my mom came up from VA. Then off the work they went. On Saturday Ry, his dad, Andy, and Chad had a nice golf outing and on Sunday we just cooked out and relaxed. I stressed way more than I should have! oh well, it all worked out!

His dad went back home on Monday...and then more busy-ness!

On Tuesday we took a "dance lesson" and we learned the modified foxtrot. HA! It was a joke. Ryon ended up teaching more than the instructor, and she didn't like that too much. She even told him she wasn't going to share her fee with him so he better leave the teaching to her. Maybe if his mom and dad understood her he would have...but apparently he did a better job! :) that's my husband!




Wednesday I had to run here, there, and everywhere to try and find a dress for my sister-in-law's wedding on Saturday....finally settled on a simple black dress. Totally not what i wanted but it worked.

Thursday the other sister-in-law's came in...BJ from Florida and Devon from CA. When I got off work we went and got pedicures and then went out to dinner. Good time.



Friday I got off a little early so I could go to Brandon's rehearsal dinner...and afterwards we all went to the fire hall where they rehearsed and we decorated.




.May 22. OH HAPPY DAY!

The wedding day finally arrived! We went out to huntfield to take pictures and then off to the fire hall! It turned out to be a beautiful wedding.



[Brandon wanted a courthouse thing--as did I--and I'm sure she feels the same as me that shes glad it turned out the way it did!]

She was a lovely bride and TJ looked nice all dressed up!

During the ceremony Aunt Sandy sang while they lit a unity candle and then a candle in memory of Bella...aaand the flood gates opened. I was holding Hunter, and I think he helped me hold it together a little, my arms weren't completely empty. The songs, the prayers, they were all hard to listen to and watch and I could have cried forever. I was so excited when they were getting married and how I was going to dress her up all cute and everyone was going to be together...it just was such an empty feeling and bittersweet day.











I had a good time and it was nice being around everyone. Going home wasn't so nice. It was pouring down rain, Ryon was working, and the house was again...cold, dark, and lonely. So quiet. I spent quite a while in Bella's room sobbing. The tear times aren't as often but when they come...you better watch out for the flood! I think that was the first time I actually cried out to God. I told him how angry I was. How its not fair that even during such a happy time, I'm soo sad. I came up with the great idea of taking pictures with her bear. I'm obsessed with wanting to see "her" so every time I take pictures I look for orbs. I don't know why I do this...I know shes there, but seeing a spot on a picture makes me smile and confirms what I already knew. Its so strange.

Anyway...Sunday we went to Ginza, a japanese steakhouse for dinner before BJ, Aunt Sandy, and Jilli went home. One last hoorah! I can only speak for myself but boy am I glad all the festivities are over!


Next UP...
wisdom teeth removal, father's day, our 1 year anniversary, and...maybe baby?! only time will tell...but when that happens, I think it'll be our little secret for a while ;)

MOD Walk & Mother's Day

Last weekend was exhausting to say the least. I've read in the grief books that it can be exhausting but hadn't really experienced it until then! Saturday was the walk and we woke up to dark clouds, rain, and it was SO windy. I cried pretty much the whole way to the park and then when I got there and saw my nephew in his shirt for Bella, the tears flowed again. I was able to get it together and when the walk started, the clouds and wind went away and it was perfect. It was a 3 mile walk...but I was ready to do it all over again when it was done!

I raised over $500 and our team raised over $13,000! Great job BCT :)


Joy, Myself and Izabell...with Marina, Brandon, and Hunter behind us



The shirts that our team wore






When we got home from the walk there was an edible arrangement waiting, from my lovely mother and mother in law...and it was yummy :)

They both went to the Children's Memorial Service at UVA which was at 2pm the same day. I plan on attending next year but this year I settled for a video of it! I slept most of the day Saturday and Sunday so it wasn't as bad of a weekend as I was anticipating.


(hanging out at the cemetery with Bella & her heartbeat bear on Mothers Day)

On Monday I walked into work to find this picture that Joy drew me for Mother's Day...(I accidentally saw it before the walk...which is 1 reason I cried the whole way to the park!)


Ryon got me stargazer lilies and our living room smells amazing...but the picture was by far the best mothers day present.

4 month angelversary

So thats what they call it.

Well I am "they" now.

WE are a strong, amazing, wonderful group of people...but not a group you would ever WANT to be a part of. It is so nice to have people who have been there or are going through it, to talk to, who understand all the feelings. It is one crazy ride I tell ya. One minute you think you are doing good, and the next you are crying your eyes out asking if it will ever get easier.

So it seems every month I dread the 12th and the 21st...for obvious reasons. I always sit and wonder what she would look like, sound like, what kind of personality she would have...and on her dates im just reminded of how old she would have been. Milestones are the hardest. I know it will get easier to deal with, but the pain in my heart will never go away. Unless you have held your lifeless child in your arms, you have NO idea. I would never wish that upon ANYONE. Sometimes it seems like its all just a dream...like, did that REALLY happen?? I just doesnt seem real at times. Was I really pregnant? Did I really give birth? Did we really have a daughter for 22 days, just to let her go be with Jesus? Sometimes I wonder how in the world I walked out of the hospital that cold morning in January...I really WALKED? I remember kissing her hands and her feet and her cheek...and WALKING away. How does anyone walk away? The body that I left was Bella's, but her spirit was with us as we left...she was with us as we walked out of the hospital.


Im still trying to figure out just how to continue our relationship as mother and daughter. Its very confusing. She will always be my daughter and we will always have this special bond, but how do you continue your relationship with your dead child?? I go to her grave, I bring her things, I clean her stone, I read to her, sing to her, talk to her, I go in her room and rock in her chair with her heartbeat bear...but I want to do more for her. But WHAT?


I feel like I have closure...I know shes gone, I know shes not coming back. Ive accepted it. Im sad...and thats that. But people throw out this word "closure". Its not final...Bella will always live in my heart and she will always be a huge part of my life. So what is closure all about??? Ah, oh well. In the end, I dont care what people think, I will just do what FEELS right.


"Happy" 4 month Angelversary my beautiful Bella. Mommy loves you.

Dear JUNE, please hurry...

SO...I went to the oral surgeon the other day after a course of antibiotics...

(which was given to me by a doctor who was in the delivery room when I was in labor and who started the practice I went to. AND who gave me my 20wk US when we found out we were having a girl...but didnt "remember" me...not that im upset about it or anything--ok that is SO besides the point...but it DID irritate me!)

I was thinking I could just go there and it would be a quick fix... HA! Do they not realize I have PLANS?!? We are on a schedule here people! I wasted a sick day just to sit there and have him tell me I needed to have my wisdom teeth taken out because 1 is sideways and the others just need to come out. He said it would be best to do it all in one shot, while i was asleep. GREAT! So my plans are on hold yet again. My appointment isnt until JUNE. That is a lifetime away when you are looking forward to starting to try for another baby.

I am on the list incase anyone cancels. SO anyone out there who has an appointment at WINC oral surgery...PLEASE CANCEL IMMEDIAETLY! (because patience is just not in my genes!)

Thank you :)