The beautiful dress & bonnet that Bella was laid to rest in

I only wish that I could have seen her wearing this...along with her white frilly socks with crosses, and cute little white dress shoes with crosses...

http://www.jcpenney.com/jcp/X6.aspx?DeptID=59325&CatID=59325&Grptyp=PRD&ItemId=145ae5d&cmRef=http://www.jcpenney.com/products/C042313.jsp

She is the most beautiful angel!!!

I also put a onsie that says "little angel" in her casket incase she wanted to change our of her dress :)

First test...FAILED

The days seem to be getting better...I wake up every morning and kiss her picture and tell her good morning and throughout the day things are fine. I hang out in her room from time to time but I usually end up getting frusterated so I dont spend too long in there. When bedtime rolls around I tell her goodnight and my daily frustration turns to sadness, I fall apart. I miss her terribly...I was looking forward to nighttime baths, reading to her, rocking her to sleep, and the sleepless nights that followed...so nights are especially tough.

Yesterday I went with Ryon to his eye surgery and waited in the lobby-thankfully I didnt know any of the people there since his mom went with him the last time.
Today was my first test...I went with him for his check up where I had been with him a couple times while I was still pregnant, so I knew a couple of the ladies there (along with DrBrack and Karen, the coordinater). This time it was a different lady who gave him all the usual eye tests after surgery so there were no questions...shew! and then another who brought us into the room where the Dr would check on him...so far so good...we werent seeing the usual lady. Then the Dr came to check on him(which by the way ryon's eyes are looking good...except he might have a YAG capsulotomy on his left eye since its still a little cloudy) We were only with the Dr for a minute and he looked at me a little different-this time it seemed like the look all the DRs gave us at UVA-like he knew something but didnt want to say anything--it could just be my parinoia! anyway he checked him out and he left--i thought we were out of the woods until tada...the very nice lady who we normally see walked in to give him the usual shpeal and the first words out of her mouth after she saw i no longer had a big ol belly.."Aw hows the baby?!" My heart dropped as I tried to say "the baby didnt make it" about half way thru the tears started...of course she felt bad and gave me a hug as she said she was sorry and she shouldnt have asked. I of course feel bad that she felt bad! lol I thought i was ready to venture out the house and see people I knew. Should I walk around with a sign just so no one asks until im ready to talk about it without crying like a fool!? I cant say that im not ready to talk about it...because Im ok if people who im talking to already know what happened-I dont mind telling her story...Its when people who dont know ask how she is doing that I get really upset--for some reason I just cant say the words she didnt make it or she passed away or shes with jesus..ect--without opening the flood gates. When does that stop?? Surely if im fine talking about it with people who know I should be ok talking about it with people who dont?! Ah I guess it just takes time...going back to work at the bank should be interesting!! Definatly have anxiety just thinking about it....

Overall things seem to be getting better as they all said it would but when they are bad, its worse. As times goes on people are suggesting that I talk to someone who has been thru the same thing or a therpist. Really?? Do you know me?? I would never go for that...I dont talk to anyone let alone someone I dont even know...im way too shy and reserved(unless of course we are close)..PLUS I dont think I would get anything out of it. I understand what happened, why it happened...im just angry THAT it happened...I just get sad just reading other peoples similar stories, how does hearing other peoples stories help? Maybe for some people, I just dont thing I am one of them. Eventually I will accept it and move on, right now im just sad...I feel like I lost the best thing that ever happened to me...to US...what we have wanted and talked about for SOOO long and im just afraid that we arent ever going to be able to have anything close to Bella(ie a brother or sister for her) I guess all I can do is hope and pray. We have our very own guardian angel watching over us and will be teaching me patience, which is what kids do, right?

Ok im done with MY therapy session now :)

Happy 1 month Birthday Bella!

Dear Bella,

Today we would be celebrating your 1 month birthday. Daddy and I decided to go to the DMV to get license plates to let you know how much we love you. Daddy got bella143 (143 meaning I love you) and mommy got 143bella. We cant wait to get them in the mail! Afterwards I went to your gravesite, it was so painful to talk to you and you not be there...I know you heard my cries and I got your message when i got back in the car and looked at my phone the time was 1:43.. you made me smile. It was so hard coming back home to an empty house... I just want to hear your coos and cries. I miss you and love you more than words can say and I pray that you give daddy and I the strength to go on...

Love you ALWAYS!
Mommy

BTW we are supposed to get some ice and snow tonight-I hope the pink blanket thats in there with you along with your bears will keep you nice and cozy! :)

Alveolar Capillary Dysplasia

The preliminary autopsy results came back...Bella had ACD--below are 2 websites where you can go to learn more about it...

http://www.3angelsfund.org/story.php

http://www.acd-association.com

My whole body went numb when Ryon told me.

I am so thankful for him, he is so strong and reminds me everyday to stay positive and not to worry... just keep praying and what is meant to be will be...

I miss Bella so much...and my heart aches more than you could ever imagine...I can only hope that her case was just a 1 time thing and we will be able to give her brothers and sisters one day. I want nothing more than to be a mother and have healthy children to love and care for...and tell them all about how special their big sister in heaven is...

Now I Lay Me Down To Sleep

Today we laid to rest our beautiful baby girl, Bella Renae Blehr...

Walking into the funeral home that morning was hard...seeing her tiny casket there and not being able to see her one last time in her beautiful white dress with crosses and her cute bonnet...little white frilly socks and white shoes with crosses...sleeping peacefully with her bears...im only left to imagine what she looked like in it..I believe she is the most beautiful angel...and she wins the best dressed angel award if there was one... :)

We played Mariah Carey & Boyz II Men's "One Sweet Day" and Faith Hill's "There You'll Be" while the family went in a room and prayed with Pastor Van...

We all walked in took our seats and I couldn't even being to tell you what Pastor Van was saying...my mind was wondering and I just stared at that tiny casket... looking at her picture..and just trying to imagine what she looked like...we played Amazing Grace by Chris Tomlin and then Nick (Ryon's brother) read this poem he wrote...

Arms of the Angels

Safe in the arms of the angels,
Baby Bella slumbers today.
Not destined for life on this earth,
But a home so far away.

Just as far away as heaven,
just as close as the beats of our hearts.
And although we can't be with you,
We will love you where ever you are.

A dream that blessed us with beauty,
Is the hope that still shines our way.
That you rest in the arms of angels,
'Till we meet again one sweet day.


We were so proud of him, we would have never been able to speak...

I asked Aunt Sandy to sing Borrowed Angels by Kristin Chenoweth--and she did an amazing job. Pastor Van spoke again and prayed...and then we played Lullaby by Creed...

We then headed to the grave site...we prayed and Aunt Sandy lead everyone in singing Jesus Loves Me...we released balloons--and had a laugh when mine and Ryon's 22 balloons got stuck in the trees...everyone else released theirs in the open field..BEHIND the trees after our mistake :)

Family & friends then went to the church to eat while Ryon and I stayed at the grave site for a little bit longer and talked to her...

She rests beneath a cherry blossom tree and I cant wait to see it in the springtime...Its going to be lovely once they put in the bench, we will have a place to sit when we visit her and spend time with her and read to her...talk about our day and so on...

Bella Renae Blehr, 22 days, went to be with Jesus at 1:40 a.m. on Tuesday, January 12, 2010, at UVA Hospital in Charlottesville, Virginia.

Born on December 21, 2009, at Jefferson Memorial Hospital in Ranson, she was the infant daughter of Ryon and Maryann Blehr of Charles Town.

In addition to her loving parents, she is survived by her maternal grandparents, Steven and MaryBeth Ritter of Virginia; paternal grandparents, Horace Blehr of California, and Terrie and Billy Collins of Charles Town; and numerous aunts, uncles and cousins.

She was taken from us too soon, but this was all part of His amazing plan for her. She will forever be our guardian angel.

Services will be held at 11:00 a.m. on Monday, January 18, 2010, at the Eackles-Spencer & Norton Funeral Home, US 340 at Halltown Road, Charles Town/Harpers Ferry, with Pastor Van Marsceau officiating. Interment will be in Edge Hill Cemetery in Charles Town.

In lieu of flowers, memorial contributions may be made to the Bella Renae Blehr Memorial Fund, c/o Bank of Charles Town, 111 E. Washington Street, Charles Town, WV 25414.

Bella is now our Guardian Angel

I am truly devastated at the loss of Bella Renae, as we all are. She was taken from us all too soon. She was the most most precious being Ryon and Maryann created and was the most loved baby by so many. She fought so hard to stay here with us, but God must have had an awesome plan for her NOW. There have been numerous prayers for Bella and the family, along with donations sent to Maryann and Ryon and I (Tammy, Maryann's sister) want to genuinely thank you all for your support. We all hung onto hope and faith that Bella would miraculously recover from her illness. Unfortunately we are now left with broken hearts, left to grieve her loss and I just am left to wonder what an amazing girl she would have been. I am left to think about all the fun I was looking forward to having with her and what an amazing young lady she would have gone onto become. I feel as all the dreams I had for her have been shattered. I don't think I will ever get over this loss, though as time passes it will ease all of our pain and suffering. I ask for your continued prayers and support as we try to make sense of this tragedy. I love Maryann and Ryon so much and wish there was something I could do to take away their pain. They have the most amazing relationship.I don't think I have seen a more loving couple- one that was truly looking forward to having this child, their princess. We all share in their grief. Having had three healthy children I can only imagine what it would be like to lose a child, and the thought of that is just heartbreaking! I hope that as time passes on, after Maryann and Ryon have had time to grieve over their firstborn, they will go onto to create more children as beautiful as our sweet Bella Renae. They are both wonderful caring people inside and out and I want nothing more for them to be blessed with healthy children in the near future. There is nothing more valuable than that, as I see now. So our Sweet Bella Renae is now our Angel of God. She has earned her wings and will be watching over us forever and always. I will miss her forever, but she is in my heart always. Tammy (Maryann's sister, Bella's aunt)

meeting day..#2

Last night before we left the nurse practitioner said "I was surprised to see her still here, i thought for sure when i came back she'd be gone..."

Seriously?? After being at the hospital all day and it was about midnight maybe later that she said that I just broke down...this time it was worse... i felt delusional...I had the strangest feeling in my stomach and Ryon kept telling me we needed to leave and get some rest but i didn't want to leave her side..I just thought for sure something bad was going to happen...I couldn't stop staring at her & before we left I saw a light by the head of her bed...i convinced myself that it was just some blurred light I was seeing because I was crying soo much. I thought i was seeing things...I didn't say anything but I knew.... Bella was going to heaven soon...

Ryon's dad stayed with her so we could put our feet up for a few hours--and having him there to update us through texts all night made it a little bit easier being away...

We always thought the night and day nurses were very different..it seemed as though the day team gave us hope, but when we walked in this AM Horace(Ry's dad) said there wasn't much difference between the 2 anymore...I didn't ask what he heard nor did it really matter--we knew her time was coming. MIL was on her way to attend the 1:30pm meeting with us...

This was it. There wasn't much to talk about in the meeting it was pretty much understood what was going to happen...her spells were getting worse, they were going to need to put in another chest tube and didn't know if she would tolerate it. She was on everything she could possibly be on...from the NICU and the PICU...they tried EVERYTHING.. our baby girl just wasn't getting any better--she was only getting worse...the question was, what were we doing to her? for 3 weeks she was on 100% oxygen...she was becoming immune to the pain meds and the sedation..they had to keep going up on the blood pressure meds..there was 1 more ventilator they could have tried--the jet..but they were sure she wasn't going to make it if they were to make the switch, and even then it wasn't anything that would help...considering ALL the other drips and such she was on, it wasn't going to make a difference. This wasn't good for her, looking into the future..

We just wanted her to have a fair chance at life, and so we decided enough was enough. The meeting was over from there...Ryon and I were left alone for a little bit and tried to process what was about to happen...how would it all happen?? we were terrified of the unknown...and we weren't ready to let go--we didn't want to make the decision...or have anyone think "how could you do that??" We didn't want to give up...but how is it fair to her?? We knew in our hearts we were making the right decision for HER...but why were we having to make the decision in the first place...ITS NOT FAIR! He is supposed to make that decision, not us!

We just wanted more time...we decided tomorrow would be the day if she was going to make it until then...We had talked to Ginny the chaplain and we were going to have a mini service and prayer with the family and they were all going to say goodbye and then it would just be Ryon and myself with her as she went to be with Jesus...

It was late and my mom, MIL, Horace, myself and Ryon were all in the waiting room...Tammy and my dad just showed up and I was about to bring them back to see her when Naomi came out to talk to Ryon...He waived me over and said we need to go back--I was shaking and I knew this was it...

(Its kind of a blur writing this a week after..but this is how I remember it)


TUESDAY January 12Th 2010 (very early AM)


When we got back to her bedside her sats were really really low--everything was dropping and she wasn't going to come back...they called in Brooke(the doctor)

I cant even put to words how I was feeling...shocked, scared, sad, heartbroken, etc... we spent a few minutes with her and then called the family in to see her and say their goodbyes...and they went to the waiting room...

I was able to hold her for a little bit while she was still alive with her tubes in, and then handed her off to Ryon...

I brought her into this world while Ryon watched and held my hand and I'm glad she was in his arms as she left...we both have a special bond with her...

NO parent is supposed to watch their child die...this wasn't how it was SUPPOSED to be... but it happened the best way it could have...it wasn't during a procedure with us not being by her side, surrounded by doctors and nurses...scared and alone. She went as peacefully as possible. She waited until the family was there and they all got to say goodbye. We were able to hold her, and I was by her side holding her hand and she died in her daddy's arms...she wasn't in pain anymore...

We finally got to give her a bath...wash her hair...dress her for the first time and touch her without looking at a screen wondering if she was going to drop her sats or if her blood pressure would spike...

I always thought it was so weird for people to touch someone after they passed...but i was so happy to hold her and touch her and talk to her even tho she wasn't there anymore...I knew she was still there listening...and I wish i could have held her forever...

my heart was so heavy and still is but at that moment i felt a sense of peace...the pain will never go away and that moment will forever be in my mind...i can only pray that as time goes on it gets a little easier...

She lived for 22 days and has touched more people in her short time--more than many of us will in a lifetime. We are so blessed to have had her for as long as we did...

Our lives are forever changed and I feel like a totally different person now because of what we've been through.

Bella was brought here to teach us a very important lesson...LIFE is a precious and you have to cherish every moment! I am SO thankful for her...Ryon and I are stronger because of her and our family is lot closer. We can make it through anything...and she will give us the strength to do so! We will live our lives for HER and hope to make her proud...

She will always be daddy's little girl and mommy's little princess....our first born...and now, our Guardian Angel...

RIP baby girl...I LOVE YOU SO MUCH!!!!!

A New Day

Last night(well early this AM) Bella gave us quite a scare. We got back from dinner and went back to see her and she was doing okay. I came out to the waiting room to watch the COWBOYS vs SHEagles game(which incase anyone missed it WE WON!!WOOHOO) Anyway back to reality...I went back in to see her and say goodnight to find that her SATs were dropping and she was really starting to wake up. Pretty scary...I have not seen her move so much in what seems like forever...she was kicking and punching...so they gave her tons of drugs and ended up having to bag her. I went out to the waiting room because it scares the crap out of me when shes got tons of nurses around her and all her numbers start dropping. The nurse came out and talked to us...and we are thinking she had this episode because they stopped giving her the paralytic drug that she was on because they want her to move a little bit(as long as she can keep her sats up) and it was just catching up to her... We made it back to the RM house around 1am and...no early am phone call!!

Came to the hospital this AM to find her oxygen level at 49!

Of course...Ryon and I tried to step out for a little bit and just hang out the 2 of us..so we went to the mall...got a call from ryons dad saying her sats were dropping really low and her heart rate dropped and we should come back(altho he told ry not to tell me) so ryon was like lets go back.... and we get back to see her sats splitting 70/45 and her blood pressure was up...but just a few mins after we got back her sats were back up to 100/99(great) so this just means that she needs her parents...whenever we leave she flips out. I know that there were other factors(well mainly the fact that they changed out her Flolan drip and they were moving her which she HATES) but I just think she needs me...i think i will set up a cot and bring a mini fridge and post up next to her until shes well enough to come home! :) i need her just as much as she needs me...i just wish we didnt have to be so far from home!

The Day I Became A Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown