Wednesday, April 11, 2012

Thinking of you

Hey

It's the annoying Aunt again...

I am pretty sure that today 3 years ago we were celebrating your life in your church. I could be a day or 2 off but I just wanted to let you know that I am still thinking of you:)

It is ironic that I was watching "Glee" last night (It's a show about show choir which I am pretty sure you would have been involved in with Mrs. Zedlitz). Anyways, the ironic part...Sue Sylvester the cheerleading coach (which you would have done too to be just like your favorite Aunite) found out she was pregnant with a girl that may have Down's Syndrome. That part in the show made me smile and the reason there were no tears is because to me you would have to be lucky to have a baby with Down's Syndrome just like you. Sue Sylvester hugged one of her cheerleaders, Becky because she also has Down's. Becky told Sue the only advice she had was for Sue to be "Patient!"
Becky and Sue

Popeye always told us that "we wouldn't be very good Doctors, because we didn't have any "Patients." <--Play on words.

Continue to watch over our family and friends!
Benzen will be here before we know it and we know you will be watching :)
We love and Miss you Remington!
Love,
Auntie Ashey

Thursday, March 1, 2012

Birthday Month

Hey Rem's

It's almost your 3rd birthday!! 12 more days... I can't believe it has been 3 years already. There is so much that you know, that we don't know about yet.

When you were in your mommy's belly I was just a young kid back then. I was 20 years old. I know that sounds really old to you, but to me that is young. I had just met this really nice guy who eventually wanted to marry me. I was a junior in college living in BG, (away from all of our family). After you were born I felt like I grew up. I matured into the woman I am today. You helped me become ME! Ross and I were going to give blood for some free ice cream and a free Tshirt when Popeye called me. He had this sound in his voice that I knew something was wrong. I knew he wasn't even supposed to be in the United States at the time so to have him call me was weird. He had told me that your mommy and daddy got some news about you being a very very special baby and that everyone was at your house with them. We hung up and I just looked at Ross and at that point the free ice cream and Tshirt didn't matter to us anymore. We drove home to Swanton to be with family. I never felt so alone living 30 minutes away. I just wanted to be with my brother who had been there for me my entire life.

The next few months were a blur because we just wanted you to get here so badly. Finally, I got the call, "She's a birthday, She's a Beauty, She's a birthday beauty beauty beauty beau...."-your daddy. Which I still have saved on my phone. You were here! Your dad was right- You were a BEAUTY. I was so proud to be your Auntie. I thought about all the things I would teach you and all the things that you would teach me. Because we all know you would teach me more than I could ever teach you.

After you were back at home and what we thought was safe and sound. I went back to school. I then got that dreaded phone call again. Same weary eery voice. I knew it was time for me to pack up my bags again and make that drive up Kellogg road to Swanton. I wrote an email to my professors telling them the story. They all understood and told me not to worry.
When I was in my car driving to the hospital Gabba sue called me. She said, "Ben says to drive carefully and take your time. We'll see you when you get here." I hung up and thought to myself. Why was he thinking of me? Why did he think to have Gabba call me to say that. Your daddy had so much other things to think about and much more important issues to worry about. BUT that is your daddy. You have the best daddy you could have ever picked. He puts others first. He doesn't want people to feel sorry for him. He wants others to be safe so that your auntie can make it to read your final lullaby to you, while your angel friends take you to God's pearly white gates.

Your mommy and daddy are the two of the strongest people I know. They are going not going to be happy when I say this because they do not want sympathy from others. They are not the type of people to do the woe is me which makes me look up to the both of them even more. I don't know anyone else who could have been through what they went through and still love each other the same (even more than they did when they first met). Your mommy and daddy were strong enough to keep the rest of us stable. Which it should have been the other way around. I was ready to be the strong one. I was ready to be on call in the middle of the night just in case your daddy needed to talk or have me come over. But they didn't need me. They were the glue that held us all together. But in reality YOU were the glue. You kept us going. We knew you were watching and we knew we had to spread your wings and words to get others to understand your messages.

This theory of strength was proven again with your little brother recently. I know you know all about it;) Popeye, Aunt Leigh Leigh, Aunt Lori, Cousin Tyler and myself were all sitting at the very same hospital that you were born and where you left us eating at the cafeteria visiting Bubbe. Popeye tried explaining your little brothers situation to Tyler when Popeye couldn't finish his sentence. Let's see if you can finish it. It went like this; "There are 2 people who are not here right now because they have to be home whom are some of the ........" (strongest people we know). Popeye was right. We all knew it. Through the tears in our eyes in the very same cafeteria you were there. I could feel you in the silence as we all tried keeping our composure. You have changed our lives from a million light years away. Your daddy has always been fascinated with space and atmosphere, now you have your own shining star!

I wanted to share some things with you because I know you check on this blog every so often. I will wish you a happy birthday in a couple days.

Keep shining on us and we will continue to keep you alive in our hearts,
Love you Remi,

Love Auntie Ashie




I think that you are shining in the middle window ---->









<-----You were with me by my heart the entire day!
-My special Angel Flower Girl

Saturday, March 5, 2011

Dear Remi,

I am so so sorry! Not fair. Wish I could know the right things to say or do or feel.

Your Daddy called me to tell me how special you were going to be while I was in a very far away land called Brazil. He and your Mommy were so scared cause they weren’t sure how they could find the right way to raise you and be good parents for you. I flew home right away.

I walked into your house and everyone was so silent. So scared. So afraid. So worried. Your house was filled with a lot of people that loved your Mommy and Daddy to help in any way they could. You see, none of us knew at that time that you were going to change our lives the way you did and that you couldn’t have picked better Parents.

Your Parents spent a month in their closet, crying and praying and thinking about you. When they came out, they told us that after a month of being in the closet their heads were clear. They were going to have a very special baby and they were going to devote their lives to understanding everything they could about your special needs and do whatever they needed to do to raise and support you forever and ever. We were all so proud of your Parents. So proud!
They did just that. They read a lot of very big books. They talked to everyone they could that raised baby’s like you. They went to the Doctor a lot. They were so excited to have you. You became a special celebrity to many people. Some of whom we didn’t even know.

Then after what seemed like a very long time it was time for you come out of your Mommy’s belly. There was so much excitement in the hospital about you, we couldn’t wait to see you, hold you, kiss you, love you. At the same time, we were also still worried. Were your Parents going to be able to give you everything you needed and how could we help? It wasn’t going to be enough for your Mommy and Daddy to simply raise you. Their plan was to do whatever it took to help you love life and excel in your special way. When it was time for all of us to come see you for the first time we raced 100 miles, down the long hall, each one of us trying to be the first one to see you, hold you, kiss you, love you.

There was so much going on that it was hard for me to make sense of everything so some of the moment was sort of foggy. What was easy for me to see was the look in your Mommy and Daddy’s eyes. I was no longer worried about their ability to take care of you. Everything was going to be OK! I was so right but also so wrong. So very right, but so very wrong.

Your parents did take such good care of you. Better than anyone else in the whole wide world!! But I couldn’t have been more wrong about everything being OK. I was soooo wrong and I am so sorry. So SORRY. So Unfair. So wrong.

Your Mommy and Daddy somehow knew how to take care of you. They made sure that all your doctors, nurses, and everyone made sure you were their toppest and most special person to take care of. They listened to all the smart people but made their own decisions about what was best for you. They stayed with you when the sun was up and when the moon came up.

They never left you. Never!! They never gave up on you. Never!! They thought of nothing else but you. Nothing!!

And when your Mommy and Daddy walked down the 100 mile long hallway, holding tightly to each other’s hands, out of the hospital without you, I watched them for a long time from behind until they vanished from my sight. And I sobbed and sobbed liked never before just like I am now as I write this.

You see, we knew you were going to be so very special. We had no idea that this meant something so very different.

Your Mommy and I had a very special talk about you. We were in your kitchen at the counter. She told me that when she prayed for g_d to make you better it never occurred to her that g_d would make you better but in his own way. I have a lot of special talks with your Mommy, but that one was the bestest of all because she was so honest about her feelings and I felt so close to her every since then.

Now 2 years later, your Mommy and Daddy will celebrate your birthday alone and with all of us and they will cry and cry and cry and we will cry and cry and cry a lot cause we can’t stand not having you with us.

And we still don’t know why?

Why?


Love,
PopEye


I love how you’re looking at Mommy in this picture.

Friday, January 7, 2011

Updating

Hey Remi

I haven't posted on here in forever! I just wanted to update you on your auntie's and new uncle's life.

You remember Ross right? Of course you do, he was by your bed sometimes. You may have pulled some strings for us to get engaged. Ross proposed to me October 15th, 2010. Our wedding is October 1, 2011. I hope you can show up in an angel flower girl dress. Don't forget Aaden he can come in an angel ring bear suit!

We also bought our first house. We haven't closed yet, don't you think you can help us out there!? I know you have a plan so I am being patient. Your picture of you on the hospital bed with your daddy's hands in a heart shape will be on our mantel. I see that picture every night before I go to bed. You can stop by anytime, and watch over us. I understand if you are busy watching over your new sister though.

Beyla is a beauty! She looks just like you. It's hard not to see you when looking into her adorable little eyes.

We all miss you Remi and we know you are watching over all of us!
Love you,
Auntie Ashley*

Saturday, March 13, 2010

Remi's 1st Birthday


Today is Remi's first birthday. I can't believe it has been a year already since I got a loud voice mail from my brother, Ben. The voice mail singing, "It's Remi's birthday, she's a beauty, she's a birthday beauty beauty beauty beau..." I have saved this message on my phone for an entire year and still can not find the heart to delete it. I know that since Remi entered this Earth she has influenced numbers of people. She has helped me in more ways than I will ever really know. If you feel comfortable I know that our family would love hearing stories of how you think Remi has helped you. Remember this day not only as Remi's birthday, but as a day that she helped us all.

She will always be remembered.
Love and Miss You Cutie Sweeper
Auntie Ashley

Wednesday, September 23, 2009


We had a very special visitor watching over us the whole time and didn't know it until the end. Ben noticed his daughter's initial on the middle pole just as we finished. She is still writing her letters backwards sometimes. We miss her so much even though she's always near.

Tuesday, June 30, 2009


Dear God

It's me, Ben this time
I am going to need help with this mountain I have to climb

I am going to talk and you are going to listen
Take my daughter to heaven where I know she will glisten

You couldn't have needed her more than I
Why did you take her to the sky

I still had so much more to teach her
I am sure that your reasons are pure

One thing I did teach her is to never give up on me
I can't wait to get to heaven to teach her the alphabet A to Z

You can take her soul but you can't take her pride
She is your little angel now that she has died

How could you do this to any woman or man
I guess it's all a part of your mysterious plan

Was I a bad father, was I a bad dad
Did I take advantage of the time we had

I always knew there was something special about her
Everything happened so fast, it was all a blur

I don't know what song she would have chosen for her father/daughter wedding dance
You took her to heaven before we even got the chance

My heart will never be the same; there will always be a scar
The only remedy now is to look up at her star

I know for a fact she will outshine every star within light years
I can see her wherever she is, even through tears

God, I trust you to take care of her until I get there
There is nobody else I would trust with her care

So, give her a kiss from me and tell her everything will be OK
I will get there in time to laugh and play

By: Remi's Daddy

I'll love you forever.
I'll like you for always.
As long as I'm living, my baby you'll be (Love You Forever by Robert Munsch)

Thursday, May 28, 2009

R Angel Blog

Visit www.rangelremi.blogspot.com to find out more about R Angel.

Wednesday, May 6, 2009

"R" Angel

Today Ben & I got to deliver our very first "R" Angel basket of goodies to the hospital. Unfortunately, we delivered it to one of my best friends, Hillary. She had a daughter on Sunday morning, Molly, and she was admitted to the NICU for immature lungs and fluid on her lungs. Hillary was discharged yesterday, but Molly is going to be in the NICU for at least another week. So, we took Hillary and her husband, Chad, a basket full of bottled waters, juices, snacks, microwavable meals, soups, candy, gum, and lots more goodies to eat while staying at the hospital. Please keep them all in your prayers! It was a great feeling to be able to help out a family trying to live out of the hospital like we had to for weeks - thanks to "R" Angel! We plan to make a website for "R" Angel soon where we can keep everyone updated on what we are doing with the money that was donated. For now, we will just keep everyone updated here.

Thursday, April 30, 2009

Letter from Heaven


We got this email from my sister Jackie shortly after my little Remsicle (as I liked to call her) went to Heaven. I love reading it b/c it brings me some comfort. It was read at Remi's funeral but it was suggested that I share it with those of you who couldn't be there. So, here it is. - Amy

I guess remi wanted to write a letter to her mom and dad. she woke me up at 2am, hours after her arrival in heaven, and here's what flowed onto my paper...
Hi Mom and Dad. What a crazy tug-of-war this has been - God pulling me to come up here and the two of you so desperately wanting me to stay down there with you. It was so hard leaving the two of you - seeing how much you love me, how committed you were to me despite the challenges I would have had. The way you held me, comforted me, and took care of me was more than any baby could ever ask for...and what's up with the rest of the family and all those friends :)?! I can't believe how they all gathered and waited and doted over me for the last few weeks! and after that "arrival party" at my birth, with all those cameras flashing, I wasn't sure if I was supposed to be a rock star or an angel! Well, I don't need to tell you the answer to that question. Please don't be too sad about me having to leave. You know, I was always meant to be one of God's very special angels. You can't imagine how wonderful it is up here. Upon my arrival, God gave me the most glorious hug - I felt so safe, so peaceful, so loved, so special. And you know, God wants you to know that it takes two very special people to make a special angel like me. He says "thank you" for what you have done. Well, like they say - back to work. I'm going to be very busy watching over all of you. I love you, and I'll see you again someday soon - but not too soon! There are a lot of wonderful things in store for you.
Love you so much,
Your Remsicle

Tuesday, April 21, 2009

Letter to Ellen Degeneres

Hello Ellen

Although, I am not the one who is having my first child I have a story about a true angel.  My Brother and Sister-in-law were pregnant with a baby girl.  The family could not be happier. We found out early November that the baby girl, Remington, was diagnosed with Down Syndrome. Even though this news could be devastating we were excited and could not wait to meet her.  We finally got to meet Remi on March 13, 2009.  The delivery could not have gone better.  She was beautiful and was our little angel right from the beginning.  However, we did not really know how much of an angel she actually was.  Remi was only home 3 days when Ben & Amy (Remi’s parents) realized something was wrong with her color. It was determined that she had jaundice and had to be hospitalized. Further testing indicated that she had a rare disease called Hirschsprung's. Surgery to correct this was on Thursday, March 26. They cut off the very lower part of her colon up to the healthy area and reattached. She came out of surgery and it was called a big success. However, it wasn't. Soon after, she began swelling and blood was pooling in her body, second surgery occurred the next day. It was determined that she got sepsis and DIC.  They cut off more of her colon and reattached again. She came out of surgery with a stoma and her swelling was so bad they could not close her incision. Remi was in the hospital for a long time, which means the rest of the family was right there waiting for her to get better.  However, Remi did not get better.  Remi turned into an Angel on April 6, 2009.  Now that Remi is our families’ guardian angel, her parents are using this experience to help others.  Ben and Amy have started a small fund in Remi’s name called “R” Angel.  They plan to use the money to take meals up to the hospital for families of children who are in Pediatric Intensive Care Unit (PICU), and baskets of supplies they may need, such as shampoo/conditioner/soap/etc. We were so grateful for people bringing us these things when we were staying at the hospital, but we noticed that no one else seemed to have the amazing friends and family that we did and they didn't have the support that we had. So, we want to try and give them that support. We also want to get involved with the Down Syndrome Association of Greater Toledo and work with them to help families of children with Down syndrome as well. This is why I am coming to you, Ellen.  We would really appreciate your help in getting “R” Angel really started and helping out the families with sick children.  Please help us in any way you can.  For more information you can log onto Remi’s blog that we started while she was in the hospital.  RemingtonRemer.blogspot.com

Thank you,

The #1 Aunt,

Ashley Remer

PS…I already talked to Oprah and Dr. Phil and they are on board with this story, but I wanted you to be the one presenting our story.  (just kidding) 

Wednesday, April 15, 2009

Thank You


Thank you all for your comments and words of encouragement. Thank you to those who attended the funeral, donated to "R" Angel, and sent gifts and cards. We really appreciate everything. It's been very hard, but we are dealing with everything the best we know how. We don't understand why this happened, but we will continue to pray for strength through it all. We know this is God's plan, but it's still hard to understand. We know she will never be forgotten and we hope to keep her spirit alive through "R" Angel. We plan to use the money to take meals up to the hospital for families of children in the hospital and baskets of supplies they may need, such as shampoo/conditioner/soap/etc. We were so grateful for people bringing us these things when we were staying at the hospital, but we noticed that no one else seemed to have the amazing friends and family that we did and they didn't have the support that we had. So, we want to try and give them that support. We also want to get involved with the Down Syndrome Association of Greater Toledo and work with them to help families of children with Down syndrome as well. Thanks again to everyone! Please feel free to make a comment just so we know that you are still reading this blog.

Good Morrow,
Ben & Amy

P.S. We thought Remi looked like an angel when we took this picture. Little did we know, she was an angel!

Wednesday, April 8, 2009

Remi's Obit


REMER
Remington Lyn

Remington (Remi) Lyn Remer, God’s little angel, passed away in her parents’ arms Monday afternoon, April 6, 2009. She was born March 13, 2009 in Toledo, Ohio to her loving parents, Ben and Amy (Schimming) Remer of Swanton, Ohio.
Left to cherish her memory are her grandparents, Ron and Patti Schimming and Mike and Sue Remer; her great-grandparents, Bernadette Kaminski and the late Zigmund Kaminski, the late Woodrow and Loretta Schimming, Bob and Connie Terry, and Sandy and Marvin Remer; her aunts and uncles, Tarie and Bill Simile, Jackie and Phil Stankiewicz, Michelle and Nathan Bowe, Lori and Joe Bolyard, Leigh and Adam Pancoast, and Ashley Remer; and her cousins, Sydnie and AJ Simile, Sophia and Tessa Stankiewicz, Isaiah and Landon Bolyard, and Hudson Pancoast; and her loving friends.

Friends and family may gather Saturday, April 11th at Faith Evangelical Lutheran Church, 200 Dodge St. in Swanton, where a memorial service will be held at 10:30 a.m.

A memorial fund, “R” Angel, has been created in memory of Remi. Proceeds will be used to help families of children with Down syndrome as well as families of sick children that spend many days in the hospital. In lieu of flowers, donations may be made to this fund at National City Bank in Swanton, 110 W. Airport Hwy.

Online expressions of sympathy may be made at www.weigelfuneralhomes.com.

video

"R" Angel


Where do I start? People ask me how I am feeling. I always just say "ok". I think my true feelings are out of most people's realm of feelings and should never have to even try to understand what losing a baby/child is like . I feel like I have lost the battle and the war. When I know that's not true. I lost the battle but won the war. I will have eternal happiness with Remi in Heaven. That's how I like to think of it. At 25 years old I have had to make some decisions that no one should ever have to make. I know my little girl and wife were both suffering, I was suffering. The doctors told us that Remi would declare herself for the better or worse. On Monday April 6 we woke up and Remi had yet another infection on her diaper area. We also had a new nurse that wasn't too emotionally attached to Remi. I could see all the signs right when I walked in that PICU room that morning, I got queasy. I was right, things started happining - O2 levels started dropping, blood pressure dropped, she was letting the ventilator do all the breathing, and more. She was basicaly maxed out on medication and the doctor said that she didn't want to give her very much more. Her body had declared itself, and I want to be clear, she did not give up. At that point Amy and I had to make the biggest decision of our lives. We chose to let her go peacefully to Heaven right from our arms and not some hospital bed.
Amy and I are dealing well. My new saying is that we are doing as well and we can or should be.
Stay tuned for the meaning of "R" Angel

Good Morrow,
Ben

Sunday, April 5, 2009

4-5-09


Today we had another meeting of the minds. I had every doctor present their case on their specialty. As you can imagine the heart doctor blamed the kidneys and the kidney doctor blamed the heart. We have many vicious cycles that make one huge vicious cycle. When the meeting was over it was apparent that dialysis was not the option for us. The answer to your question why is...dialysis will not cure the kidney, they may not be able to get a big enough dialysis needle into her swollen body, if they did get that big of a needle into her artery it would take to much blood from the closest limb and she would lose that limb, the transport alone could kill her, and many more reasons. So as parents we had to weigh all the negatives with little to no positives and it was an easy decision.
On more positive notes. She has been weened off of the Nitric Oxide she was requiring to breath and aid in blood flow. She is also not requiring as much extra Oxygen from the ventilator. She is not requiring as many breaths per minute from the ventilator. Her color looks better. Her major vital signs look good. Like I said, I don't know what is keeping her with us. If she were to pass away I guarantee you it was not Remi giving up, failing, or quiting. It's the simple fact that no one can overcome God's will and he is giving Remi his all right now.
Keep the thoughts and prayers coming. Remember also, that there are a lot of sick people in the PICU with us and around the world. Now when I pray I always remember to be thankful for every second I have with Remi and anything else good. I felt I was only asking God to cure Remi and not thanking him for things.
I am going to try to leave you all with a song that is helping me through this like the last post with "Hey there Delilah. Todays is R Kelly's "Worlds Greatest" from the Ali soundtrack. All that know me know that I am a huge Muhammed Ali fan and those who didn't know, know now. Everything that is in that song I am or I feel.
Nephrology is the study of the kidney and that's what we are waiting for. So I think I am going to call the readers of this blog my "Nephrollowers"

Good Morrow Nephrollowers,
Ben

The Potty Dance

Since we are waiting for pee pee. I thought it fit to share the Potty Dance for everyone to do like a rain dance.

http://www.youtube.com/watch?v=DacxAfN_T-Y

Copy and paste this link into your address bar above. If that doesn't work go to youtube.com and type Potty Dance into the search bar.

Saturday, April 4, 2009

4-4-09


Well, what can I say that Popeye and Grandma Suemom haven't said already. Not much really changed today. We do have a new PICU doctor and the cardiologist and Nephrologist are back from vacation. So we are now trying some new "techniques". Most are just messing with the levels of medicines Remi is already getting. If these techniques do not work we may need to get dialysis in Cincy. We did have a problem this morning. Remi is getting so swollen that her IV's are almost like being forced out of her body. She used to have 2 central IV lines and 1 artery line. We lost the 1 art line. They say it served its purpose and was no longer needed. I think they just say that when things don't go as planned.
I can't even tell each and every one of you how much you all mean to us. What all of you are doing is above and beyond any expectations. I love reading everybody's comments. It takes our minds away from our troubles, even if it's just for a second. It's amazing how far and wide that this blog has followers. Not just Ohio and Michigan but Florida, California, Washington, Texas, and many more. Again, I am so proud to be Remi's daddy. Think of it this way, if you helped raise me, teach me, coached me, cut my hair, or are a family member or friend (whether you want to admit it or not) you can be rest assured I have passed that on to Remi. Or as much as I could in 3 weeks. With that said, you can all be proud.
Keep up the thoughts and prayers. They do not fall on deaf ears. By the way, the above picture is Remi in our front window when we tried to clear up her jaundice with good old home remedy sunlight.
Lastly, I think a couple lines from the Plain White T's song "Hey there Delilah" are so true for Remi. They are.....Delilah(Remi) I can promise you that by the time we get through, the world will never ever be the same. And, your to blame.

Good Morrow,
Ben

Remi was only home 3 days when Ben & Amy realized something was wrong with her color. It was determined that she had jaundice and had to be hospitalized. Further testing indicated that she had a rare disease called Hirschsprung's. http://en.wikipedia.org/wiki/Hirschprung Surgery to correct this was on Thursday, March 26. They cut off the very lower part of her colon up to the healthy area and reattahced.


She came out of surgery and it was called a big success. However, it wasn't. Soon after, she began swelling and blood was pooling in her body. Second surgery occured the next day. It was determined that she got sepsis http://en.wikipedia.org/wiki/Sepsis and DIC http://en.wikipedia.org/wiki/Disseminated_intravascular_coagulation. They cut off more of her colon and reattached again. She came out of surgery with a stoma http://en.wikipedia.org/wiki/Stoma_(medicine) and her swelling was so bad they could not close her incision.


We are now on day 9 since surgery with no urine output. She is bloated to at least twice her normal size and weight due to third spacing of fluids, http://en.wikipedia.org/wiki/Third_spacing_of_fluids. She is on a ventilator and 4 IV poles each with 4 bags of fluids and medicine keeping her alive until her kidney's kick in. Still waiting.

As of this morning the pediatric nephrologist now back from vacation has made minor adjustments in her treatment to again try to get some urine output. They will watch her over this weekend and re-assess the situation on Monday to determine next steps. 1 option would be to move her to another hospital where they may be able to perform dialysis. This would get the fluid out her body and potentially allow them to fix a heart problem called PDA
http://en.wikipedia.org/wiki/Patent_ductus_arteriosus. With the PDA fixed there is more likelyhood that her kidney's would get the adequate blood supply and then begin to function.
Moving Remi is a last ditch effort or "Hail Mary" http://en.wikipedia.org/wiki/Hail_mary. She may not survive the trip. If she does, she may not survive the procedure, etc... She is a fighter though and we continue to hope and pray for a miracle.

Sue and I want everyone to know that Ben & Amy review this blog many times a day and truly take comfort and strength from your comments.


And so we wait and pray...



Popeye and Grandma SueMom

Captains Log: 4/4/09


Can you...

Listen to her heartbeat
and not just melt?

See her smile
and tell us she's not an angel?

Stare into her beautiful eyes
and not drift away?

Feel her skin
and not dream of the woman she will become?

Hold her in your arms
and ever doubt there's a God?

Smell her cheeks
and not instantly fall in love?

Look at her
and tell us she's not perfect?

Ask for anything more?

We didn't think so.

Author: Ben Remer

Friday, April 3, 2009

4-3-09


We made it past Amy's birthday. We cannot get any answers from any doctors. The only thing they can tell us is that she is a fighter, it's a miracle she is alive, & they wish they could make miracles happen. Its gotten to the point now when a doctor comes into our room we can put words into their mouths. We know they are going to say there is nothing we can do but wait and see. Amy and I went on a rampage yesterday and demanded face to face meetings with any and everyone that has anything to do with Remi's care. If they could not be here in person we demanded they be paged and call us back. Some how we got it. We got every face to face and everyone returned our call. They may not have been happy with us, but we did get more answers. We were sick of getting answers third person. We also needed and need objective opinions. We are in totally uncharted territory and no one knows what to do. The people in charge of her care want to keep on doing what they have been doing for the past 7 days since surgery. We said "no" we want to come up with alternative methods. We have tried magnet therapy, dipping Remi's hand in warm water, and running the faucet. We need her kidneys to start up and start to make urine. A nephrologist will be coming in tomorrow. You may be asking yourself why he hasn't come earlier. Well he was on vacation for the last 2 weeks. When we needed a cardiologist he was on vacation. There is a theme there. We are no turning away opinions. We also want to talk to anyone that may be able to shed light on our baby girl's situation.
Well....Good Morrow
Ben

Thursday, April 2, 2009

Others Thoughts


I have gotten some notes, letters, poems, and prayers sent to me so I thought I would share them for everyone to read. Please post anything you think will be helpful to any of us...

I write this to you because I want you to know that everyone around you can see just how strong you are. You may have always been that big bad Ben Remer to me, the one who could hit anyone on that football field, the one that could take down anyone on that wrestling mat. Looking back on those times I thought you may have been one of the toughest people I knew. Well I was right and it isn't those touchdowns and pins that now makes me realize it. It is the past 7 months, and the past 2 weeks that really makes me look up to you. I know for as long as you live you will continue to show the world how strong you are. I want you and Amy to know that whatever you need I am here by your side, whether it be a date night to get away, or in the near future, just some time to catch up on some sleep. I know you promise to be the best dad you can be, and knowing you, you will keep that promise. Sorry I didn't put any rhyming words in there, I will leave that to you.
Love you both,
Betsy

Amy's Birthday


Today is Amy's Birthday. Remi is a fighter. She has more heart and strength than anyone I have ever met in my life. I am very proud to be her daddy. I draw all my strength from a 2 and a half week old. She has beaten all the odds. The doctor told me today that she has a 1% chance to live and I was happy, because she lives to beat these types of odds. I hope all of you get to meet her some day. She has changed my life and everyone around her, and for that matter people who aren't even around her. I always used to wonder if my life has impacted any ones around me. Some would say yes some would say no. If I would have passed away in high school or college would they shut the school down the day of my funeral. Well, Remi has accomplished my goal for myself in 2 weeks. I think she has impacted more people than Amy and I put together in 2 very short weeks. I am the proudest dad that ever existed. As long as she keeps fighting for me, I will keep fighting for her. I truly think God offered Remi eternal happiness in heaven with him a couple of days ago. She stared God down and said "No", I am going to stay and fight. I have stared people down and got what I wanted but I have never looked God in the face and told him to take his golden offer and post pone it until I was ready.
I told my boss this morning that I thought hell would look a little different that it does. I thought it was full of fire, heat, and bad people. Well my hell is my daughter fighting for her life and there is nothing I can do about it. My hell is full of loving people offering any and every tangible gift possible when that can't help us. My hell is the thought of my daughter passing away very soon and maybe even on her mommies birthday.
So, Keep praying we appreciate it. It does not go unnoticed and is very helpful. Well, I will keep everyone posted but I think thats enough to digest for a little while.

Wednesday, April 1, 2009

Remi update April 1 Midnight


Remi's kidney's have not kicked in yet after surgey last Thursday and Friday to try to correct a problem in her little colon. Ben and Amy are in her room with her day and night. She has support from many family members and friends who visit very regular. She was only home 3 days and then back to the hospital. She is in very critical condition but already baffled some the most experienced Pediatric Cardiologists and Surgeons with her ability to fight through this. Dr's believe if her kidney's would begin to function she could begin her recovery. Her blood count and blood gasses are OK. Her heart and lungs remain strong.

In her short time with us she has already made a big difference in our lives. So today's assignment is to help us pray for pee...

Popeye (Grandpa Mike) Ask Ashley how I got that name.









Precious Remington

Remington Remer was born on March 13, 2009 at 9:41 a.m.. Weighing approximately six pounds, Little Remi brought an enormous amount joy to the Remer family. Remi continues to fight to stabilize her blood count and normalize her breathing. All of your prayers and well wishes are appreciated more than you know. The Reemer family will do their best to keep everyone informed via this blog site. Please post your thoughts and comments to help keep Amy and Ben's spirits high.