8 down 32 to go

I know before I got pregnant I said I wouldnt complain about a THING. Well thats easier said than done. Im trying to embrace this pregnancy and enjoy it, but its so hard when your constantly hugging the toilet and feeling so out of it.

For those that were around when I was pregnant with Bella know that I was sick the entire 9 months (with the exception of a few weeks around the 7th month). I would take that sickness over this any day...I had an actual schedule and only a few times was it food that came up.

Round 2: In the beginning I was hungier than usual, no sickness...and I knew for sure it was a boy! Haha...that didnt last long.

The "morning" sickness came full force around 5/6 weeks. This time however, food is coming up...EVERYTHING that goes down...comes up it seems {I know, TMI) but its horrible! Once something comes up I cant eat it again for a looooong time. So ive come to dispise eating. MY BABY NEEDS FOOD!!

Also, if it couldnt get worse...ive developed lactose intolerance. Whaaat?! So no more ice cream, milk, cheese, sour cream....pretty much everything I looove! 

On top of the sickness, I was transfered to a practice that I do NOT want to go to. I dont have any other options tho. The doctor I really wanted considered it too high risk...um thats not what was said when I met with her. Just really bummed out about it. Feeling a little betrayed.

Helllllo Maryann....YOUR PREGNANT! The alternative is much worse. I would much rather be going through these obsticles than not being pregnant and counting down the days until I could be...

So im trying really hard to stay positive, and I dont mean to complain {im only human right??} Well No more complaining for me...

I really am so thankful and feel sooo blessed to be carrying my little bean. I just want to fast forward and meet this little person. Is it a he or she? What will they look like, will they resemble Bella at all? What will that first moment be like? Im really anxious and ready to find out that we have a healthy baby...and we get to keep him/her here with us.

Im just ready to be MOM.

Oh boy.....or girl?

Well, we did it again...(literally)...and IM PREGNANT!!!!!!!

I cant even begin to tell you how excited I am. I am thrilled more than you could ever imagine. Those thoughts dont come alone tho, its followed by fear and anxiety.

(And LOTS of tears both of joy and sadness)

I wish I could be carefree and nieve with not a single worry or stress like it was with Bella...but for us parents whove lost a child, saddly we are robbed of that blissful pregnancy.

This baby is just as much as a blessing as Bella was and I cant wait for the heartburn, frequent trips to the bathroom, the kicks and punches, the sound of the heartbeat, extreme rib pain....all of it....i will try my best to embrace every second and cherish all those moments, even the uncomfortable ones.

One of my biggest concerns is that people will talk about Bella even less with the second baby on the way. NOTE: talking about Bella is a good thing. This baby will in no way replace our little angel and its ok to still talk about her. She was the first person I went to and we talk about baby and being a big sister from heaven. She will watch over all of us and I know when time comes for baby to make his/her entrance...she will be there cheering me on and will make sure he/she is safe. We are aware that ACD is a possibilty again, and thats a risk we are willing to take. If this baby has the same fate as Bella...then we know he/she will be in the best company.

So please, save your congratulations for when we bring home a healthy baby. We welcome prayers and encouragement for what will be a long 9 months...

Maryann

My sweet baby Bella

Here it is August already... it's been almost 7 months since you became an angel. I cant imagine you as a 7 month old...I say that every month. Its still hard to look at babies when I feel you should be amongst them, its still not fair, nor will it ever be.

Time has passed so quick, yet it feels like an eternity since you took your last breath in our arms. I dont feel the heaviness in my arms like I used to. The smells arent fresh and I dont hear the beeping alarms except on rare occasions. I miss those things that used to make me so upset.

I miss you terribly. I miss your soft chubby cheeks and cute little nose, I miss the way you nuzzled your head on my chest, and the way you slept so peacefully in my arms right after your were born. I miss watching your toes wiggle and the way you squeezed my finger so tight right before you left. I will never forget those moments. You brought so much joy to my life and youve tought me so much in such a short time.



Oh Bella, there are some days I dont want to get out of bed, but you have given me so much strength to go on and so I keep putting one foot infront of the other until I get to be reunited with you. Everytime I think I cant, I think of you. You were such a little fighter and an inspiration and I pull my strength from your memory and the fight you put up. Its so amazing how such a tiny little baby can make such a difference.

Im soooo proud to be your mommy...and I will treasure our memories together forever <3

I think of you often, miss you, and love you even more than the day you came into our lives.

I love you baby girl.

Mom

Work

As many of you know I work at a bank. Before I came back I was sooo anxious, not knowing what to expect. My wonderful manager let me stay in the drivethru for 4 months. Before I went back inside I got "are you going to stay out there forever?!" (A lottttt) I really wasn't ready to go inside but I let people get in my head and thought, I guess I should start the rotation again and give others time away from the lobby.

The first day back inside I was literally sick to my stomach(a few times!) And I cried quite a bit, all before we even opened! I thought, I really need to find a new job, one that involves a cubical and no people interation! I even hyped myself up about another bank job, and asked about it, but my SIL works there. I knew I couldnt work with her, but when HR told me that...I got sooo angry.

Anyhow, back to the first day...a few people asked about Bella and I couldnt hold back the tears. I know most people mean well, but after someone tells you her daughter died, would you seriously ask her about another girls baby??! That first day I went home feeling pretty beat up. I hung a picture in my window a few days later with her dates, but people ignore those...instead its a lot of "is that your baby?" Or "aw what a cute baby!" Heres a good one..."aw, she was born right before christmas...and the second date, thats when the picture was taken?"  Wow.

Here was a conversation that left me blown..

guy:(talking about my angel necklace) "your an angel arent you?" Me: "uh,yeah"

guy:"ha,when youre sleeping right"

Me:"sure..actually its my daughter"

guy:"oh ya how old is she"

Me:"she passed away when she was 22 days old"

Guy:"22 days wow, she picked it out all by herself??"

Me:(look of confusion)"she passed away"

Guy:"oh..well thats life right"

Me:"yeah, i guess?...have a good day"

I didnt know what to think after he left.

A lot of times I see them looking...about to say something, and bow their head, or give me that dreaded look. You know exactly what theyre thinking. When I see people look, my heart races..are they going to ask? Am i going to have to say the dreaded words? The customers that have asked, and come to me again, I feel always want to go to anyone but me...not thaat girl.  I DO like when people ask...and then ask what happened and want to talk about it. I love talking about her. I hate saying she passed away and stopping there...and feeling bad for telling them. I want to tell every detail about every second of her life. Of course I dont unless they ask. So far ive been able to talk about her 2 times. Those customers made my day. 

Maryann

Maryann

Disconnected

Ive been in a weird place lately. The time is going soo fast yet so slow. In a few days Bella would have been 7 months old. I wonder constantly what shed be like. Its so hard to imagine her older. 

Not too long ago I was feeling really disconnected...I thought if I ignored my grief it would go away...it would be done with. I felt like I was stuck and I couldnt move forward without her. I also wasn't feeling her presence like I had been and I felt abandoned.

I went to bed one night and before I awoke I had a dream Bella was with me. She was laying on my chest in bed and I was stroking her back when I felt her wings. They were spread out and so beautiful...too beautiful for words. Just as I felt them, I tucked them back in. I woke up with the warmest feeling, my chest still felt weighed down...and then she was gone. My warm happy feeling turned to sadness when my reality set in. I felt connected to her again tho...and that brought a smile to my face. I know that wasnt a dream, she was really there letting me know she is never too far away...

When im having a really bad day, I watch the dvd from right after she was born. Its only a few seconds but I rewind, rewind, and rewind again(cutting it off right before the scary, loud clip of the helicopter taking off). Then I close my eyes and replay the dream in my head from when she visited me with her beautiful wings.

I still have my memories, but as the days go on they seem to fade. Don't they offer something to keep them fresh?! I dont ever want to feel disconnected again.

I miss you beautiful angel, mommy loves you always and forever.

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!!!!