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!!!!