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 :)
1.28.2010
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 :)
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 :)
1.21.2010
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! :)
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! :)
1.20.2010
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...
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...
1.18.2010
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...
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...
1.15.2010
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.
1.13.2010
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)
1.11.2010
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!!!!!
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!!!!!
1.10.2010
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!
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!
1.09.2010
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
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
day 19 in the NICU
another early morning phone call..this time I was already awake...7am they called to say that around 5am her SATS weren't coming back up so they did another XRAY and found yet ANOTHER pneumothorax on her right side..this time it was lower so the chest tubes that were already in place weren't able to get the air out..so they placed another one in...which she did fairly well and her SATs went right back up to the 90s. I was dreading going in today after a discouraging day yesterday...I felt better seeing her though. Yesterday her face swelled so much she was almost unrecognizable which was so upsetting but i felt better about it today. I think i cried enough to hold me over for a few more days...
I talked to the doctors for a little while and they made me feel a little better. A little more at ease....After I was done talking and asking questions the nurse let me take her temperature..which i was happy about--i like to be involved as much as possible and its the little things like that that make me feel better...
They went down on her oxygen to 70..WOW i havent seen it that low in forever...but she dropped her SATs a little so they bumped it up to 80 and a little while later she started moving a lot so its back up to 100. At least she got a little break from 100...glimpse of hope.
When her SATs dropped a little i put my finger in her hand and she squeezed it a few times.. :D She loves me. I let go and went over to the other side of her bed to look at her face and thats when she started dropping her SATs...could be a coincidence but I think its because she wants me to hold her hand all the time...
Just before dinner her SATs were staying low so they did another XRAY..and what do ya know..ANOTHER pneumo! what are they doing to my baby!!? This time it was on the left side...shes got 4 tubes on the right and just 1 on the left. They said it was a pretty sizable one on the left and there was a little air on the right...so while the NP was going to get stuff to put in another chest tube the RNs were propping her left side up to try and move the air out of the right side...and air came out of the tube on the left side! So for now they were able to get the air out of the left side without placing another chest tube in. When we got back from dinner they were trying something new...they put several inflatable "things?" under her bed(they are normally used on older peoples legs) to try and make a rocking type motion to shift the air around and out the tubes...it makes sense and sounds like a good idea...i dont want any more chest tubes going in my baby! :( hoping i dont get another 4am phone call...unless its to say she is healthy and ready to come home...
I talked to the doctors for a little while and they made me feel a little better. A little more at ease....After I was done talking and asking questions the nurse let me take her temperature..which i was happy about--i like to be involved as much as possible and its the little things like that that make me feel better...
They went down on her oxygen to 70..WOW i havent seen it that low in forever...but she dropped her SATs a little so they bumped it up to 80 and a little while later she started moving a lot so its back up to 100. At least she got a little break from 100...glimpse of hope.
When her SATs dropped a little i put my finger in her hand and she squeezed it a few times.. :D She loves me. I let go and went over to the other side of her bed to look at her face and thats when she started dropping her SATs...could be a coincidence but I think its because she wants me to hold her hand all the time...
Just before dinner her SATs were staying low so they did another XRAY..and what do ya know..ANOTHER pneumo! what are they doing to my baby!!? This time it was on the left side...shes got 4 tubes on the right and just 1 on the left. They said it was a pretty sizable one on the left and there was a little air on the right...so while the NP was going to get stuff to put in another chest tube the RNs were propping her left side up to try and move the air out of the right side...and air came out of the tube on the left side! So for now they were able to get the air out of the left side without placing another chest tube in. When we got back from dinner they were trying something new...they put several inflatable "things?" under her bed(they are normally used on older peoples legs) to try and make a rocking type motion to shift the air around and out the tubes...it makes sense and sounds like a good idea...i dont want any more chest tubes going in my baby! :( hoping i dont get another 4am phone call...unless its to say she is healthy and ready to come home...
Bella's Condition
http://www.thechildrenshospital.org/wellness/info/parents/20830.aspx
This is an article which explains her condition...However the PPHN specialists and the Neonatoligists here at UVA have said they have not seen a case like hers before...theres always a first for everything, and for lack of a better word it SUCKS that shes the first...but read the article to better understand...
This is an article which explains her condition...However the PPHN specialists and the Neonatoligists here at UVA have said they have not seen a case like hers before...theres always a first for everything, and for lack of a better word it SUCKS that shes the first...but read the article to better understand...
1.08.2010
Texts and such
The first 2 days are clear in my memory..however, the rest of the time was a blur so the following are texts that were sent to update people on Bella's status since I was unable to journal anything...
Dec 24th:
-Bella is doing great! they are possibly going to trial her off ECMO on Christmas..what a great present that would be!
The surgeon had to come in and move the cannula's a tad bit because they were a little too far in.
-Ronald McDonald is closing for the holidays so we get to stay at the Hampton Inn for free...I could get used to this!!!
Dec 25Th:
-They are going to trial her off ECMO around 10pm. She has been moving a lot today--its very nerve wracking!!
-Decided not to trial her off until the AM. The chaplain came in and prayed with Ryon and I..for Bella's health and for our strength.
-We ate at waffle house for Christmas dinner...just thinking about it makes me sad..this isn't how things were supposed to be..
Dec 26Th:
8:42am We called to check on her before heading over...and they were in the trailing off period..wow!
9:07am the Dr called to get our permission to take the cannula's out of her neck-she did good during the trial off period and everything looked fine. They were also going to put in a central line. Hoping its just another 7-10 days!
2:21pm completely off ECMO and they said shes doing good-no possibility of her going back on! They also haven't had to turn any of her meds up...its now just a slow steady process of bringing them down.
Dec 27Th:
They were able to bring her oxygen levels down a little..shes doing phenomenal!(per Janet) She wasn't as heavily sedated and she opened her eyes a little and was moving around...I was so happy to see her eyes for the first time since she left Winchester.
Dec 28Th:
Shes 1 week old today.
She had a rough night so they changed the her ventilator over to the smaller conventional ventilator instead of the oscillator. She seemed to respond well. They gave her some saline to loosen the secretions..this helped with with her sats
Got to do oral care today(swab breast milk in her mouth to give her some of the antibodies and such)
Dec 29Th:
She keeps having these bad spells.
Dec 30Th:
Episodes are happening more frequently. The Dr's are talking about possibly putting her back on ECMO..it would be very difficult though. Her sats need to be 95-100 and they are dipping into the 60s-70s. Dr's are trying everything. She does really really good for a few hours and then back to bad...so frustrating!!
PM-heading back home w/Ryon for his eye surgery, to rest, and do laundry.
Dec 31st:
4am phone call from the DR telling us that Bella was not doing good and we needed to come back to the hospital and be at her bedside. Her sats were dropping and they were having a difficult time bringing them back up. We got our things ready and they called us an hour later to tell us not to rush...we left anyway and got to the hospital to things the same as they were before we left..... they weren't making any changes just keeping her "happy"
Jan 1st: "Happy" New Year!!
Jan 2nd:
Sats were good for more of the day..5pm they dropped and stayed very low..she had a few episodes through the night.
Jan 3rd:
Came in to hear that Bella has a big episode at 5am. It took 1-1.5 hrs for her numbers to go back up. By 7am they were fine. Cardiologist came in to do the echo to check for possible damage to the heart-everything looks fine.
BAPTISM:
Our nurse today suggested that we get her Baptized if we were planning on it in case anything were to happen so we could do it in a somewhat calm way instead of rushing to do it... we thought it was a good idea so our mothers and Ryon's sister Devon drove down for the day..Tammy was already down here with us.(Ryon's mom and sister were on their way to the airport because Devon was supposed to fly back to CA but changed her flight so she could be here)
4:45pm--WOW..it was very emotional to say the least. Ryon and I held the water which was in a shell while Chaplain Ginny said a few words and then placed the holy water on her forehead. There were partitions up around her bed spot to make it more personal and for a moment block out everything else going on. She normally has her spells around this time but we were fortunate that she didn't...we were with her for a little while after and then our mothers and sisters left so it could just be Ryon, myself and Bella.
5:15pm She had one of her bad spells...I'm pretty sure they changed out her drips, which is usually why she has episodes at this time because shes not getting the support for a moment...
Jan 4Th: MEETING DAY.
I am so proud of Ryon..hes so strong and he stayed composed during the meeting while I was a blubbering mess! The doctors pretty much just said everything we already knew..sitting with her most of the day the whole time we've been here we are pretty much in the loop and know whats going on minute to minute. We(meaning Ryon because I couldn't get any words out) basically said do everything you can do to save our daughter..we as parents want her here.. however we don't know when enough is enough..we just don't want her to suffer. They don't have answers...and we know that..so the meeting didn't really seem to help...
Bella's SATS dropped around 5:45pm. They were bagged and suctioned her and it was taking a while to get them back up...I got very upset which normally happens when they have to bag her because she just looks like shes in pain..so Ryon and I left. She never fully recovered so they did an xray and discovered a pneumothorax on her right side..so they had to put in a chest tube--shes VERY touchy and actually tolerated them putting it in.
Jan 5th:
Bella had an episode at 7am when they changed out her Flolan...typical for her tho
The xray showed the air was gone. Her lungs were a little foggy but it is probably because of all the saline and fluids that she is getting.
Having a problem getting day shift and night shift on the same page--FRUSTRATING!
In the meeting yesterday they said they weren't going to make any quick changes to her meds--but the night time nurses went up a LOT of her epinephrine when yesterday they went down quite a bit. So its constantly up and down...
The doctors and our nurse decided(finally) to put together a "team" of RNs that have been with Bella and KNOW her. Its frustrating having different RNs come and go...there was no stability...having a group of nurses that know her and how she reacts and what to do when certain problems arise makes it easier on us as parents and most importantly on BELLA!
We have a team of nurses that we really like and are comfortable with...woohoo. Glad weve got that taken care of and dont have to stress about that.
-Milrinone was turned off at 11:30am. It wasnt helping or hurting...so no reason for her to be on something just to be on it...We were just happy to see one of her pumps gone...She still holds the award for most pumps tho!(about 12)
Jan 6th:
Bella had a good night. They were able to wean the Epinephrine to .06--yesterday at the same time it was at .15 normally her SATS would drop when they weaned by .01 so to bring it down that much and her keep her SATS up is good news.
The night RN said shes not doing as good as this morning when she left(which confused me because it seemed as though she was doing better) Her numbers looked good and the epi was weaned to .03 and since 7pm she only desated 1 time around shift change but they were able to bring her SATS up by just changing the vent settings...her oxygen was brought down to 97...seeing it come off 100 made me hopeful things were going to turn for the better...the NP came over and said she thinks shes about to turn the corner...every time we get good news or someone says shes getting better I try not to get too excited because its always 1 step forward and 20 steps back...I do have to say I was a little excited when she said that--still cautiously optimistic! I was able to go to sleep on a good note.
Jan 7th:
3am phone calls are never a good thing.. They called to tell me she developed another pneumothorax and had to put in another chest tube. Their goal today is to work on bringing down the tidal volume on her vent settings. The epi was turned completely off from 12am-4am but had to be turned back on because she started to desat. It was turned on the lowest it can go though.
Around 5:30pm the surgeon came up and put in another central line...because she has so much edema he wasnt sure if he would be able to put it in but he came out and talked to us and let us know he was able to..but with all the swelling theres a greater risk of infection she he will be checking on it over the next few days.
Got a phone call around 9:30pm from the DR telling us that after the central line they were changing one of her chest tubes to a larger one..In the process of doing that they discovered ANOTHER pneumothorax on the left side so they put in another chest tube...total of 3 so far!!
Jan 8th:
10:30 am-SATs are staying in the low 80s high 70s. Normally they would change the peep on her vent but Dr Boyle feels like thats not helping so they wanted to try and let her recover on her own...so far its not working.
They decided to put her back on the oscillator because its more gentle...but at the same time more aggressive...so it seems like a step back-just hoping she doesnt keep developing these air pockets!! I went back to the RM house to rest...sitting by her bedside listening to the oscillator was exhausting and I couldnt handle it.
On my way back to the hospital after resting the DR called and said they changed the larger chest tube back to the smaller one and saw another pneumothorax...so another chest tube was placed...so far shes got 3 on the right side and 1 on the left.
-Another family meeting was scheduled for Monday..
We went back to see her for about 30 minutes before shift change...
Once we got back to the RM house I lost it, i couldn't stop crying...i felt as though the Dr's lost hope and I had given up. I was so exhausted and i felt so alone. Its so hard not having Ryon with me(and its just as hard on him being away) Even with my mom here and other people coming and going its not the same...The only person I want to be around is him..hes the only one who knows EXACTLY how I feel. We have so much support and everyone is going through this with us but I would rather be alone. Answering question after question from everyone can be even more stressful...I want to update on my time--am I being rude?! I hate that I have to deal with the stresses of having a very ill baby and then on top of that having to try and repeat everything that's going on to everyone constantly... OK now I can breathe a little.
So I ended up not going back to see her after shift change..I was just too emotional and had a migraine from crying...I sent my mom over to give her a kiss from me and tell her that I loved her...I felt so horrible and like a bad mother...I told her I would be back to see her and I didn't go...I needed a break...its such a struggle...I need to be with her but I needed a break--just ended up crying myself to sleep
OK now I'm caught up so I will update day to day...
Dec 24th:
-Bella is doing great! they are possibly going to trial her off ECMO on Christmas..what a great present that would be!
The surgeon had to come in and move the cannula's a tad bit because they were a little too far in.
-Ronald McDonald is closing for the holidays so we get to stay at the Hampton Inn for free...I could get used to this!!!
Dec 25Th:
-They are going to trial her off ECMO around 10pm. She has been moving a lot today--its very nerve wracking!!
-Decided not to trial her off until the AM. The chaplain came in and prayed with Ryon and I..for Bella's health and for our strength.
-We ate at waffle house for Christmas dinner...just thinking about it makes me sad..this isn't how things were supposed to be..
Dec 26Th:
8:42am We called to check on her before heading over...and they were in the trailing off period..wow!
9:07am the Dr called to get our permission to take the cannula's out of her neck-she did good during the trial off period and everything looked fine. They were also going to put in a central line. Hoping its just another 7-10 days!
2:21pm completely off ECMO and they said shes doing good-no possibility of her going back on! They also haven't had to turn any of her meds up...its now just a slow steady process of bringing them down.
Dec 27Th:
They were able to bring her oxygen levels down a little..shes doing phenomenal!(per Janet) She wasn't as heavily sedated and she opened her eyes a little and was moving around...I was so happy to see her eyes for the first time since she left Winchester.
Dec 28Th:
Shes 1 week old today.
She had a rough night so they changed the her ventilator over to the smaller conventional ventilator instead of the oscillator. She seemed to respond well. They gave her some saline to loosen the secretions..this helped with with her sats
Got to do oral care today(swab breast milk in her mouth to give her some of the antibodies and such)
Dec 29Th:
She keeps having these bad spells.
Dec 30Th:
Episodes are happening more frequently. The Dr's are talking about possibly putting her back on ECMO..it would be very difficult though. Her sats need to be 95-100 and they are dipping into the 60s-70s. Dr's are trying everything. She does really really good for a few hours and then back to bad...so frustrating!!
PM-heading back home w/Ryon for his eye surgery, to rest, and do laundry.
Dec 31st:
4am phone call from the DR telling us that Bella was not doing good and we needed to come back to the hospital and be at her bedside. Her sats were dropping and they were having a difficult time bringing them back up. We got our things ready and they called us an hour later to tell us not to rush...we left anyway and got to the hospital to things the same as they were before we left..... they weren't making any changes just keeping her "happy"
Jan 1st: "Happy" New Year!!
Jan 2nd:
Sats were good for more of the day..5pm they dropped and stayed very low..she had a few episodes through the night.
Jan 3rd:
Came in to hear that Bella has a big episode at 5am. It took 1-1.5 hrs for her numbers to go back up. By 7am they were fine. Cardiologist came in to do the echo to check for possible damage to the heart-everything looks fine.
BAPTISM:
Our nurse today suggested that we get her Baptized if we were planning on it in case anything were to happen so we could do it in a somewhat calm way instead of rushing to do it... we thought it was a good idea so our mothers and Ryon's sister Devon drove down for the day..Tammy was already down here with us.(Ryon's mom and sister were on their way to the airport because Devon was supposed to fly back to CA but changed her flight so she could be here)
4:45pm--WOW..it was very emotional to say the least. Ryon and I held the water which was in a shell while Chaplain Ginny said a few words and then placed the holy water on her forehead. There were partitions up around her bed spot to make it more personal and for a moment block out everything else going on. She normally has her spells around this time but we were fortunate that she didn't...we were with her for a little while after and then our mothers and sisters left so it could just be Ryon, myself and Bella.
5:15pm She had one of her bad spells...I'm pretty sure they changed out her drips, which is usually why she has episodes at this time because shes not getting the support for a moment...
Jan 4Th: MEETING DAY.
I am so proud of Ryon..hes so strong and he stayed composed during the meeting while I was a blubbering mess! The doctors pretty much just said everything we already knew..sitting with her most of the day the whole time we've been here we are pretty much in the loop and know whats going on minute to minute. We(meaning Ryon because I couldn't get any words out) basically said do everything you can do to save our daughter..we as parents want her here.. however we don't know when enough is enough..we just don't want her to suffer. They don't have answers...and we know that..so the meeting didn't really seem to help...
Bella's SATS dropped around 5:45pm. They were bagged and suctioned her and it was taking a while to get them back up...I got very upset which normally happens when they have to bag her because she just looks like shes in pain..so Ryon and I left. She never fully recovered so they did an xray and discovered a pneumothorax on her right side..so they had to put in a chest tube--shes VERY touchy and actually tolerated them putting it in.
Jan 5th:
Bella had an episode at 7am when they changed out her Flolan...typical for her tho
The xray showed the air was gone. Her lungs were a little foggy but it is probably because of all the saline and fluids that she is getting.
Having a problem getting day shift and night shift on the same page--FRUSTRATING!
In the meeting yesterday they said they weren't going to make any quick changes to her meds--but the night time nurses went up a LOT of her epinephrine when yesterday they went down quite a bit. So its constantly up and down...
The doctors and our nurse decided(finally) to put together a "team" of RNs that have been with Bella and KNOW her. Its frustrating having different RNs come and go...there was no stability...having a group of nurses that know her and how she reacts and what to do when certain problems arise makes it easier on us as parents and most importantly on BELLA!
We have a team of nurses that we really like and are comfortable with...woohoo. Glad weve got that taken care of and dont have to stress about that.
-Milrinone was turned off at 11:30am. It wasnt helping or hurting...so no reason for her to be on something just to be on it...We were just happy to see one of her pumps gone...She still holds the award for most pumps tho!(about 12)
Jan 6th:
Bella had a good night. They were able to wean the Epinephrine to .06--yesterday at the same time it was at .15 normally her SATS would drop when they weaned by .01 so to bring it down that much and her keep her SATS up is good news.
The night RN said shes not doing as good as this morning when she left(which confused me because it seemed as though she was doing better) Her numbers looked good and the epi was weaned to .03 and since 7pm she only desated 1 time around shift change but they were able to bring her SATS up by just changing the vent settings...her oxygen was brought down to 97...seeing it come off 100 made me hopeful things were going to turn for the better...the NP came over and said she thinks shes about to turn the corner...every time we get good news or someone says shes getting better I try not to get too excited because its always 1 step forward and 20 steps back...I do have to say I was a little excited when she said that--still cautiously optimistic! I was able to go to sleep on a good note.
Jan 7th:
3am phone calls are never a good thing.. They called to tell me she developed another pneumothorax and had to put in another chest tube. Their goal today is to work on bringing down the tidal volume on her vent settings. The epi was turned completely off from 12am-4am but had to be turned back on because she started to desat. It was turned on the lowest it can go though.
Around 5:30pm the surgeon came up and put in another central line...because she has so much edema he wasnt sure if he would be able to put it in but he came out and talked to us and let us know he was able to..but with all the swelling theres a greater risk of infection she he will be checking on it over the next few days.
Got a phone call around 9:30pm from the DR telling us that after the central line they were changing one of her chest tubes to a larger one..In the process of doing that they discovered ANOTHER pneumothorax on the left side so they put in another chest tube...total of 3 so far!!
Jan 8th:
10:30 am-SATs are staying in the low 80s high 70s. Normally they would change the peep on her vent but Dr Boyle feels like thats not helping so they wanted to try and let her recover on her own...so far its not working.
They decided to put her back on the oscillator because its more gentle...but at the same time more aggressive...so it seems like a step back-just hoping she doesnt keep developing these air pockets!! I went back to the RM house to rest...sitting by her bedside listening to the oscillator was exhausting and I couldnt handle it.
On my way back to the hospital after resting the DR called and said they changed the larger chest tube back to the smaller one and saw another pneumothorax...so another chest tube was placed...so far shes got 3 on the right side and 1 on the left.
-Another family meeting was scheduled for Monday..
We went back to see her for about 30 minutes before shift change...
Once we got back to the RM house I lost it, i couldn't stop crying...i felt as though the Dr's lost hope and I had given up. I was so exhausted and i felt so alone. Its so hard not having Ryon with me(and its just as hard on him being away) Even with my mom here and other people coming and going its not the same...The only person I want to be around is him..hes the only one who knows EXACTLY how I feel. We have so much support and everyone is going through this with us but I would rather be alone. Answering question after question from everyone can be even more stressful...I want to update on my time--am I being rude?! I hate that I have to deal with the stresses of having a very ill baby and then on top of that having to try and repeat everything that's going on to everyone constantly... OK now I can breathe a little.
So I ended up not going back to see her after shift change..I was just too emotional and had a migraine from crying...I sent my mom over to give her a kiss from me and tell her that I loved her...I felt so horrible and like a bad mother...I told her I would be back to see her and I didn't go...I needed a break...its such a struggle...I need to be with her but I needed a break--just ended up crying myself to sleep
OK now I'm caught up so I will update day to day...
1.07.2010
Miracles do happen!
Well... sweet lil Bella Renae Blehr made her entrance into this world December 21st and what a rough start she has had into this world since that day! Things were fairly smooth in her first hours of life, however things started to go downhill quite fast. She was taken by ambulance to Winchester, a larger hospital and shortly after arriving there was flown to UVA Children's Hospital. The reason for doing so was they do ECMO, should Bella need to have that. It proved to be a smart move as she ultimately needed that last resort life saving surgery/treatment. She did great on the ECMO and was successfully weaned off the machine. Unfortunately, her body did not repsond like most babies do after coming off ECMO and her body went into distress. I can say in just a few words that this entire ordeal has been a complete nightmare and we have all been distraught over what has occurred. A more detailed journal will follow from Day 1 until now from Maryann. It is difficult to write but it's important.. This will surely be a story to tell later on that miracles really do happen. Coming from the aunt/sister point of view.. I can only sympathize with what Maryann and Ryon are truly feeling. This is just soo unfortunate that something like this happened to their baby. Maryann did everything right throughout her pregnancy and they both live life the right way. Things like this just aren't supposed to happen, especially to my family, and yet it did. I speak for myself, and I'm pretty sure on behalf of Maryann and Ryon that the support they have received has been amazing. It has helped ease the pain, just a little as they battle this emotional rollercoaster. The power of soo many prayers for Bella and the family has been overwhelming. I believe God is watching over Bella, this most precious miracle that has been created. He is healing her, slowly but surely. A message I found says, I must trust in your will and have faith You will answer my prayers on Your time.
So, I was able to go visit December 31st-January 4th. I was able to see Bella in her more peaceful moments- at least in the first day or so when she was fairly stable. Of course I also saw the more unstable times when her sat's dropped. Pretty scary when that happens! Her color looked good the first few days, though towards the end she was a little on the pink side. I was a little fightened when she had one her episodes, and it seemed just about every doctor in there came over to help get her back to normal levels. It was a little reassuring when the doctor came over to talk with Maryann telling her not to be alarmed with all the commotion. How can you not feel that way though! It seemed the time I was there Bella was pretty stable during the day and when evening came she had her episodes and spiraled downward. She is on every medication she can possibly be on, so it's a mystery as to why she is not getting better. Doctors seemed to be stuck in the mode of keeping her stable more than anything, and not having the best of luck with weaning her off of any of the numerous medications. I think I did fairly well handling my emotions, for Bella's sake anyways. I was told beforehand that she likes peace and quiet and too much stimulation would send her numbers down. Didn't want that by any means! The day nurses were really great and felt at ease talking with them about everything. Even though they were on the realistic side, not sugar coating any of the news, they said it in a personable way. The night nurses on the other hand I was NOT fond of at all. It was soo difficult to see Bella this way, being soo heavily sedated and on life support. In spite of all the tubes, she is just soo preicous and sweet looking. She has beautiful black hair.. like Maryann and I had when we were born. Poor thing had to have a hair cut already since they had to put a tube in her head.. I kept having the urge to cover her in that sweet baby smelling lotion as her skin was dry. but her body is super senstive to touch so that will wait until my next visit.. She'll be better by then, right?? The night before I left Bella was baptized. It was a tearjerker for all of us! We know that this was just an added measure of healing for Bella!
As of yesterday January 6th we were given a glimpse of hope as Bella had a good day. Of course we all remain hopeful, and faithful and believe there is a happy ending for Bella and her parents. It will be a long time before she can go home I do think, but that is ok! We will remain patient as the doctors work to heal her completely. We/I thank everyone for their donations that have come in, but most of all your continued prayers and support. They sure have helped! The days have been pretty foggy since day one- but I think now that is being lifted little by little and we can envision the bright sunny days that will follow, and an even brighter future for Bella. Keep praying!
Love, Tammy (Bella's awesome aunt who will spoil her rotten.. and get to give her back to mommy and daddy afterwards :))
So, I was able to go visit December 31st-January 4th. I was able to see Bella in her more peaceful moments- at least in the first day or so when she was fairly stable. Of course I also saw the more unstable times when her sat's dropped. Pretty scary when that happens! Her color looked good the first few days, though towards the end she was a little on the pink side. I was a little fightened when she had one her episodes, and it seemed just about every doctor in there came over to help get her back to normal levels. It was a little reassuring when the doctor came over to talk with Maryann telling her not to be alarmed with all the commotion. How can you not feel that way though! It seemed the time I was there Bella was pretty stable during the day and when evening came she had her episodes and spiraled downward. She is on every medication she can possibly be on, so it's a mystery as to why she is not getting better. Doctors seemed to be stuck in the mode of keeping her stable more than anything, and not having the best of luck with weaning her off of any of the numerous medications. I think I did fairly well handling my emotions, for Bella's sake anyways. I was told beforehand that she likes peace and quiet and too much stimulation would send her numbers down. Didn't want that by any means! The day nurses were really great and felt at ease talking with them about everything. Even though they were on the realistic side, not sugar coating any of the news, they said it in a personable way. The night nurses on the other hand I was NOT fond of at all. It was soo difficult to see Bella this way, being soo heavily sedated and on life support. In spite of all the tubes, she is just soo preicous and sweet looking. She has beautiful black hair.. like Maryann and I had when we were born. Poor thing had to have a hair cut already since they had to put a tube in her head.. I kept having the urge to cover her in that sweet baby smelling lotion as her skin was dry. but her body is super senstive to touch so that will wait until my next visit.. She'll be better by then, right?? The night before I left Bella was baptized. It was a tearjerker for all of us! We know that this was just an added measure of healing for Bella!
As of yesterday January 6th we were given a glimpse of hope as Bella had a good day. Of course we all remain hopeful, and faithful and believe there is a happy ending for Bella and her parents. It will be a long time before she can go home I do think, but that is ok! We will remain patient as the doctors work to heal her completely. We/I thank everyone for their donations that have come in, but most of all your continued prayers and support. They sure have helped! The days have been pretty foggy since day one- but I think now that is being lifted little by little and we can envision the bright sunny days that will follow, and an even brighter future for Bella. Keep praying!
Love, Tammy (Bella's awesome aunt who will spoil her rotten.. and get to give her back to mommy and daddy afterwards :))
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