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...
Thursday, April 30, 2009
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...
Tuesday, April 21, 2009
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
The #1 Aunt,
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 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.
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
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.
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
Sunday, April 5, 2009
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,
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
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.
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.
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
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
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.
Thursday, April 2, 2009
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,
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.