Gracie Gledhill passed away last night. She was born last March with Hypoplastic Left Heart Syndrome (HLHS). Gracie had her first surgery, the Norwood, at 4 days old. She was scheduled for her second surgery, the Glenn, on February 12, 2009 but it was determined that her heart was too sick and the surgery would be too risky. Gracie needed a heart transplant to live. A heart became available after only three days and she had a heart transplant on February 22, 2009. Unfortunately, the heart didn't take and she came out of surgery on life support (ECMO). Yesterday she was taken off life support and gradually slipped away.For a short season Gracie influenced a lot of people. My wife and I have shed many tears for this child, her siblings, and parents who we’ve never met personally. But, we share the same doctors, the same hospital, religious beliefs, and corresponded through email. Incidentally, my wife and I have loved the name Gracie and had planned to give that name to a daughter we miscarried (which was our fifth miscarriage).
Anyone who reads the Gledhills journey of ups and downs in dealing with Gracie’s congenital heart disease will feel a closeness or connection with her because all us are dealing in some way or another with life and it’s challenges. Gracie left behind her brothers Max, Taylor, sister Callie, and her mom Michele and dad Tom.
Over the years I have been deeply affected by other sick children I’ve associated with while staying in Primary Children’s Medical Center in Salt Lake City, Utah. It’s heart breaking to know parents who’ve fought to keep their children alive only to see them slowly slip away back into God’s loving arms. And it’s inspiring to witness children who’ve been fortunate to continue their journey in this life. I am one of those. Regardless of the outcome it seems that these lives teach all of us the value of own lives and how fragile we are. We live for a short while but in the end we all go home to that God who gave us life. But, some of us get to go a little earlier than expected.
One of the songs on this blog is by Annie Lennox called Into the West for the film Return of the King: Lord of the Rings Trilogy - Read the inspiring lyrics. Click Here
What a sweet baby girl and what neat parents she has. I have been following their blog since you posted about her. How very hard to lose such a sweet girl.
ReplyDeleteTragic - We cannot help to feel for that family we do not know. What a precious angel! The name Gracie is a beautful name!
ReplyDeleteWhat a gorgeous child. I'm pretty sure I could never go through something like that. Knock-on-wood.
ReplyDeleteThe one upside of the blogging world is the ability to lurk in other people's worlds, thus appreciating your own life or envying their lives. I somehow lurked my way to your blog and was touched to read what you wrote about Gracie. I have followed little Gracie's blog and feel so sad at her passing, along with so many other strangers. I took time to read your blog postings and felt I had to tell you that I experienced such a warm spirit of love as I read it. I hope you're okay that I'm a stranger posting on your blog, but just so you know--this stranger will be praying for you and your family.
ReplyDeleteI found your blog through Sweet Gracie's. My heart was humbled as I read part of your story, enough to bring me to my knees in prayer. I plead with the Lord that He will bless your family! We too have had medical struggle in our family....and it is difficult to overcome the challenging obstacles that arise.
ReplyDeleteYour music is breath taking...sounds as if coming from the heavens. The music touched my heart deeply...and brought comfort for the medical struggles that we are striving to overcome. Where can I find your music on CD??
Please, know that you are in our prayers. We have been touched by many lives these last couple of months of families who have lost loved ones....many of them babies. I am touched by these stories in such a profound spiritual way. I too, will be holding my family closer...kissing their cheeks a little longer and enjoying and living the moment.
our prayers are with you-
Hugs-
Paul:
ReplyDeleteI can't thank you enough for the wonderful post about Gracie and her family. What a great and loving family they are indeed. Gracie touched our lives in ways that are impossible to understand. She was brought into this world for such a short time, but has touched thousands of lives. She was truly a gift.
Gary Mayer
Gracie's Grand Father
i discovered your blog through my friend jed platt almost a year ago. i have been wanting to thank you for some time now. i work at primary childrens hospital as a tech. our unit cares for the heart babies and i often have the privileged of helping the nurses care for them while their families rest. for me, you have provided a voice to all of those beautiful babies and children who can't express themselves through words. i sincerely thank you for this.
ReplyDeletePaul, You are such an amazing writer. What beautiful words you wrote about Gracie. I listened to some of your music which I love. They are going to make great Christmas and thank you presents for all of our heart doctors and nurses. What an inspiration and hope that will be to them here in California!
ReplyDeleteHi Paul, I found your blog through Gracie's-in fact. I just want to let you know she actually was born March of 2008-she would have been 1 year old on the 20th. I'm a heart mama myself-my own March 08 baby Luna has single ventricle and dextro.
ReplyDeleteI've been enjoying your blog-and I really liked what you posted about heart palpitations. I've been having some myself and was able to sort of self-diagnos through your list.
Thanks for blogging about Gracie-girl. What a sweet, sweet angel-and what courageous parents. There are hundreds, if not thousands of people saying "Good night Gracie".
Peace,
Sabrina
ps-come visit our blog sometime...my little Luna is truly a miracle-completely healthy and vibrant-despite living with rare CHD.
Hi Paul, My name is Hilary Cook. My son Daxton had a heart transplant September 10, 2008. It has been such an amazing journey, we have learned things and met people we never would have met without this journey. I almost positive I have seen you at the hospital next time I will introduce myself. I have been listening to your music on Gracies blog, so beautiful and peaceful. I plan on buying all of your cds, asap. We will most definatly will be praying for you and your sweet family. Thank you for your inspiring words. Much love, Hilary Cook
ReplyDeleteHi Paul,
ReplyDeleteMy husband, Aaron Knox had a heart transplant 4 years ago on Feb 28, 2005. He had the LVAD for 18 months prior to transplant. Had 5 false alarm waiting for his heart and just before he received the gift of life 21 days to the day, he was hospitalized at Toronto General Hospital in Toronto, Ontario, Canada. His Lvad when into failure has has to go on the Pneumantic Vad pump. Aaron was diagnosed with a cardiomyopathy back in april 2003 and soon was listed for a heart. In Aug 03, the medications was no longer effective and the reason he received the LVAD a bridge to transplant. Dr. Rao was the surgeon who performed the LVAD and his transplant. Dr. ViV Rao's mentor was Mehamid Oz from New york. He's the one that taught aaron's surgeon how to insert the LVAD. Aaron climbed a mountain 1 year after his transplant. I remember at the time waiting for his heart how precious time is. Fast forward 3 years. We finally get pregnant for a little baby girl only to find out that she had several congenital heart defect such as ebstein's anamoly, tetralogy of fallot with pulmonary stenosis and hypoplastic veins and multiple vsds ( 2 large and many many little ones that it wasnt possible to keep count). We know that eventually she will need to be listed for transplant but so far so good. We were told that her condition wasnt not related to her father's heart condition as his was due to a viral infection but Aaron always had a heart murmur growing up..difficult to say. I just wanted to say I love what you have done with your web page. You have a very beautiful family and have such a great musical talent.We will pray for you and hope you can receive the gift of life when the time is right!!
Thank you for your sweet post. I am a friend of Michele Gledhill's and was blessed to know Gracie and follow her short journey here on earth. Michele told me about you and your blog and I am so grateful to now read about your inspiring journey. Although I had heard of you, I had not heard your music. Now I cannot get enough of it. Thank you for sharing your talents! And thank you also for introducing us to the song "Gracie" by Ben Folds. It could not be more perfect, and will always have special meaning for those who knew and loved Gracie Gledhill.
ReplyDeleteI will continue to follow your blog and your own heart journey. You and your sweet family will be in my prayers each day.
Hello, my name is Millie and my son Colin is four and was born with HLHS. He's had four open heart surgeries, the last being the Fontan. I have followed Gracies s journey also and it just breaks my heart that she passed. I found your blog through someone with my support group. You are an ispiration to all of the heart moms and dads out there. I will continue to follow your blog and pray for you and your family.
ReplyDeleteGod bless,
Millie and Colin-HLHS
Paul, I'm one of Gracie's grandmas, and I thank you for your sweet comments about our Gracie girl. Our last days with her were precious gifts, and listening to your music at her bedside comforted our hearts and souls. Your kindness has touched the hearts of our whole family and countless others. Please know that our thoughts and prayers are with you as you await your transplant. Your family is beautiful; we pray for blessings on all of you. Thank you so very much. Sincerely, Arlene Snow
ReplyDeleteHi Paul. A blogger friend of mine from SLC told me about the article in the Deseret News this morning. I didn't find the article whe was talking about but I did find the one from Oct.
ReplyDeleteI had a heart transplant at the UofU Sept 16, 2007. I read a lot of your posts and I am sorry for all of the suffering you have gone through. I sure do hope you get the real call soon.
As for me, I was a lot luckier than you have been. I had a massive heart attack when I was 36 caused by a artery disection. I did pretty well for 12 years and then things started going down hill. I was listed when I was 50 and got my new heart only six weeks later. I have a rare blood type so I started on top of the list.
I'm doing ok now. We're still working out some issues. Mostly medication related. I have a lot of pain in my feet and legs. But soon, I hope to be back at work (it's been 4 years since I was able to work).
It was great to meet you and read about your life. You are in my prayers; I do pray for you that you will get "the call" soon.
Blessings,
Christine
Paul, We too loved this post about sweet Gracie. I was able to read the article in the Deseret Morning News this morning and loved it! Way to go raising awareness for other CHD's! If you are at Primary's for testing in the next few weeks, please stop by the PICU and visit. Grant will be arriving in less than 2 weeks (possibly sooner since it appears I am having some late pregnancy complications!). We will be there for some time and would love to visit. Our prayers continue to be with you.
ReplyDeleteAlli and Kyle Hicken
parents of baby Grant-HLHS
Paul,
ReplyDeleteGreat story in the paper. Thank You for taking the time and the ENERGY (I am sure that you don't have much) to share your story. Kaidence and I will forever be spreading awareness for Organ Donation. It's the least that we can do. We do this in hopes that people like you and others can get their second chance at life.
We continue to pray for you.
What a beautiful post about the amazing Gracie!
ReplyDeleteYou're such a great writer and I am enjoying your songs. Owen just LOVES them!
We're always praying for you and your family. You're heart will come soon!
Did you have the highly sensitized antibody issue as well??? This seems to be Owen's biggest obstacle! Just another hill to climb and prove that we can handle the challenge! :)
Andrea
Paul -
ReplyDeleteIt was an honor to meet you and your wife at Gracie's funeral. Your music filled the room with an amazing spirit that we will always remember. Thank you for sharing your talent and for honoring Gracie in that way. I have also had the pleasure of learning some of your piano music as I was your backup pianist in case you received your heart this week. What a blessing it was for me and my family to have your music in our home as I was frantically learning it in case I was needed. You are a gifted composer and your music is beautiful! We will keep you in our prayers and truly hope the Lord blesses you and your family in every way possible.
Sincerely,
Natalie and Alan Peterson
I was just invited to the benefit concert and looked at your blog and thought I would comment here. You probably won't remember me, but I was a student body officer at Snow when you were a student body officer in college. I remember sitting around the piano at a lodge (Sundance I think)and you played the song "Choppin Broccoli" on the piano. I have loved your music since then. I am touched by what you are going through and the positive outlook you have on life. My heart breaks for you losing five babies. I had my 4th miscarriage a year ago and it hurts. I hope that you can get some answers about why that is happening. I was lucky enough to hear about a blood disorder called antiphospholipid antibody syndrome (APS) and asked my doctor to test me for it. He did and I have it. This has helped in knowing possible reasons for my miscarriages. This may be something worth looking into. Anyway, I just wanted to let you know that we will pray for you and your family and we are hoping to attend the benefit concert. Thanks for your great music and inspiration.
ReplyDeletePaul,
ReplyDeleteI was saddened that I didn't get a chance to meet you at Gracie's funeral. I am her aunt that was honored to be on the program with you. You did such a wonderful job! You have such an amazing talent. Thank you for sharing it with us! Thank you for caring about our little Gracie. It makes her passing a little easier to know that she was loved by so many and will never be forgotten.
We had so many people praying for Gracie, now our prayers will be directed towards you getting you a new heart!
I hope to have the chance to meet you someday.
Stephanie
Paul,
ReplyDeleteI am a neighbor of the Gledhills and I fell in love with sweet Gracie girl too. I absolutely loved listening to you play the piano at Gracie's funeral. You have an amazing gift and I know that it meant more than anything to the Gledhills to have you on the program. You are an inspiration! Thank you so much! I hope and pray that you may receive a new heart and that all will go well and you can continue to bless others through your inspiring music and testimony in the Lord Jesus Chris.
Stephanie Adair
Hey Paul, I went to Olympus High School about the same time as you, but I spent many girls camps with Lynette. I was glad to find your story through our many common friends, I wish you the best. I posted the concert info on my blog, tell Lynette hello.
ReplyDeleteHi Paul -
ReplyDeleteI love your blog...your candor and your humor and your testimony. Thanks for sharing! We're praying for you and for your beautiful family. We all need your hands and your heart!
Cori Connors