February 29th would be 6 months from when our sweet Lily Grace became an angel but that date does not exist.. I always hold the "Lily Grace Challenge" on the 29th of the month, the day of her Angelversary so I had to come up with a solution.. It will happen over 2 days this time- she will be gone for half of a year so this deserves a 2 day challenge! The Lily Grace Challenge will happen on Thursday, February 28th and Friday, March 1, 2013. This marks Lily's 6 month Angelversary.. the day that our sweet baby Lily Grace became an angel. Time just keeps slipping by without Lily... that's very hard.
In honor of Lily's monthly Angelversary, I ask everyone to do something nice for someone else- that is the challenge! Her angelversary is a very hard day for all of us and I am try to turn that day of sadness into more of a positive day (as much as possible).
So I challenge each and every one of you to participate in the Lily Grace Challenge. Please share this..tell your family and friends about it too. I challenge you to do at least one nice thing for someone else and this could be big or small. Just do anything that would help another person- plus you won't expect anything in return and if they want to repay you in any way just tell them that they can repay you by doing something nice for someone else in honor of Lily Grace.. and tell them her story if you want too...
Our Lillian "Lily" Grace was such a wonderful, sweet and perfect baby that left our world way too soon at just 18 days old. I held her as she took her last breath and the whole time she kept one eye looking at me and everyone else until she took her last breath.. hardest day of my life. To help make this time of the month more positive for myself and my family.. I ask you to help me honor Lily and all of her friends in heaven.. please do something nice on the 29th (or in this case the 28th and 1st day of the month)to remember not only Lily Grace but all of our loved ones gone too soon.
Thank you everyone! When you are done with her challenge please post "Done Lily"... that way Lily knows you are done. :) This Lily Grace Challenge will help to honor the memory of our precious Lily Grace on such a sad day for everyone touched by Lily Grace. Spread the word... Thanks everyone!
Written last night on Lily's Facebook page "Never Forget Lily Grace":
Losing my baby..
Six months ago today the Doctors stood around me to say that they were sorry but our Lily Grace.. she wasn't going to survive without machines.. she wasn't going to make it..
There were probably 4-5 doctors/ surgeons standing there as I was sitting... They asked if I wanted to turn her machines off that day or what I wanted to do... (Please know that her doctors were so caring & kind.. I'm forever grateful to all of the staff at Kosair) ❤
I just kept saying.. "No...no.. no.. I can't.. I can't..no..I'm not ready.. "
So they gave us options and one would give her 2 more days & then they would see how her body would respond at that time.. "Yes.. yes.. That's what we want to do..".
They said that it wouldn't make the outcome different but she wasn't in pain & if we agreed that on that Thursday (2 days later).. if they tried to turn machines off & she still couldn't survive.. would we agree that we would turn her machines off & let her pass away after we spend time with her that day.. "Yes.. Yes I said"..
I immediately went to her side and prayed.. and begged.. and prayed.. And pleaded "Lily.. Please prove everyone wrong okay.. You can make it sweet baby.."
Less than 24 hours later sweet Lily started to have bleeding in her stomach & around 4 am that next morning we had the talk with the doctor.. she wasn't in pain because of the medicine but ... sweet Lily wasn't going to make it.. her Dad & I agreed that we wouldn't make Lily wait another day.. as much as we wanted her here.. we couldn't do it.
One phone call was made to family & they started making calls for us.. everyone joined together at Kosair to say our goodbyes to her... 6 months ago tomorrow...
We sang to her, loved on her, kissed her, told her goodbye & to be strong... we would never forget her... God blessed us by making her alert all day.. she held our hands and looked into her eyes..
Around 3:15 pm I told her nurse that I wanted to hold her & that meant... we were ready to turn the machines off...within 15 minutes of Lily being placed in my arms after her machines were turned off she became an angel that day surrounded by 30 family members and friends.. plus the medical staff... and they were sad too... it seemed like the staff loved our Lily too..
At 3:30 pm on August 29, 2012 our Lily Grace became an angel in my arms.. 6 months ago tomorrow.. ❤❤
Please pray for me... my kids.. my family.. and anyone else who loved & lost Lily
Please ❤
©2012 nzaPhotography, LLC | Nicole Zirnheld Aldridge |www.nzaPhotography.com
Written after midnight..early morning Thursday, February 28th on Lily's Facebook page "Never Forget Lily Grace":
Sweet Lily Grace.. Mommy's heart is forever broken because in about 24 hours you left me... us.. our family.. six months ago. Half of a year has passed.. Life is not fair.. I wonder sometimes what I have done to deserve this.. Life has not been fair to me for a few years really but more so within the last 15 months..
Your Dads best friend unexpectedly passed away 3 years ago in January 2010.
I got pregnant after having a Mirena IUD for four years (it was in the right place and it was like being struck by lighting my doctors said..) and I lost that baby shortly after they removed the IUD and then had to have surgery for Ovarian Cysts that I never had before that pregnancy... that was August 2010
A really sweet woman.. my Grandma Ruth Pifer suddenly got brain tumors and passed away around Christmas 2012 (I was able to tell her about how I was pregnant with you before she passed away).
Family things that I won't discuss on here but for the good and the bad.. things have changed and my heart is broken..
I started college for my Master's and that started the day after your Dad's best friend passed away.. it seems like things have went down hill from there really..
then my sweet Lily.. you.. I found out that I was pregnant with you on December 9, 2012.. that you were a baby girl with a sick, sick heart on March 30, 2012.. then amnio tests, genetic tests, appointment after appointment, diagnosis change after diagnosis change (not for your heart but for your chromosome conditions), told low survival rates then they became high.. then low.. then high.. I had to prepare myself for the worse and hope for the best.. I prayed and hoped for the best.. but things haven't been working in my favor for awhile now...
My sweet Lily Grace you were born on August 11, 2012 and sadly.. you left me when I was holding you on August 29, 2012.. you left me 6 months ago this week..
Can you please send some good luck my way.. some less stress.. and please tell God that I have always heard that he will not give me more than I can handle.. I don't think I can handle any more.. like zero.. please let him know.
When you were in the hospital and you crashed twice in front of my eyes.. I said to God "If this is a test.. please.. I fail.. no more tests please.."...
Your dog Jasmine (one of our pugs) got really, really sick and almost died while you were in the hospital, right after you crashed the first time. The doggy doctor didn't know if she would make it but she has.. She is still on a lot of medicine and we are grateful that was able to stay here with us... you would have loved Jasmine and she would have loved you..
Now your Daddy's taxes are being reviewed and who knows.. audited.. who knows.. there are other things going on in our family that I can't discuss on here either.. I just don't think my heart can handle one more thing..
We are selling our house now and moving sometime this March. We put our house up for sale last year because we needed a bigger house because we were having you!! Then within two weeks of listing our house, we found out you were sick, your heart was sick! The house inspection on our current house went great but I don't know how well everything is working at our new house.. Regardless we are moving out of this house because it is really sold.. I just wanted to move on to the next chapter in our life.. to plant a memorial area for you and make a beautiful memorial inside our new house for you..maybe even a hairbow/ craft area so I can make many more hairbows for the sweet babies at the hospital.. I just wanted this house stuff to go smooth but it is not... ugh.. We are 2 weeks in to a 45 day closing window and I need this to work out because we have to move out of this house now.. no matter what.. what are we going to do if things don't work out for this new house??...ugh..
You being born was such a blessing and I am so glad to have met you, had you, spent time with you, and loved on you... I just need time to grieve with no more things happening in our life right now..
You and your siblings have given me the best days in my life.. you gave me the best 18 days plus the time you grew safely in my belly.. I used to beg you to come back to me but I know that can't happen... I will love you forever and always and I have worked hard to make sure people won't forget you or your friends in heaven... Please heal my heart.. it is forever shattered...
P.S. Oh and Lily.. Tell Walt Disney in heaven to send some Disney magic my way.. some good luck.. some happy days.. :) I always wanted to take you to Disney World which you kind of went because I was about 6 weeks pregnant with you on our last trip.. now you have probably met Walt Disney himself.. ♥ say hi for me.. and please talk to God for me ♥
I love you sweet angel...
Mommy ♥
"I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be."
One more thing..do you remember this song that I sang to you:http://www.youtube.com/watch?v=ito5ELbyyxs
Written Monday, February 25th on Lily's Facebook page "Never Forget Lily Grace".
Goodnight my sweet angel Lily Grace. Mommy has been having a hard time recently and missing you more than ever. You will be gone from my arms, my touch, and my kisses for 6 months this week. It's not fair.. I miss you so much and my heart hurts because you are gone from this physical world.
I guess you know that I'm having a hard time because I had to pull the car over when I was driving tonight because I was crying so hard. I know you are always with me so I know you were there...
I just want to know why.. Why did you leave me? I'm not mad at you.. I just love you so much and I'll never understand why you are gone..
Hugs, kisses, and lots of love from earth.. Love your Mommy ❤❤
*I mean no disrespect but please don't try to explain why Lily is gone.. I'm having a hard time with her 6th month Angelversary.. I know she's in Heaven with God but for a grieving Mom- at least this grieving Mom.. That doesn't always make me feel better.. In my heart.. the best place for her to be is in MY arms.. selfish or not.. That's how I feel & maybe one day I'll feel differently but not yet... God will tell me one day why he took her and until then.. I'll never know*
❤Meet our February 28th Heart Angel Treston Samuel Hinchey Oropeza ❤ Son to April and Josh Oropeza. Treston’s story as told by his Mommy:
Treston Samuel Hinchey Oropeza, Born on November 24, 2009 and Passed Away on January 28, 2010.
Treston was born to Josh and I on Nov 24, 2009 a beautiful 9lb 2oz baby boy... Perfectly healthy and happy!! He is our forth born- two sisters and one big brother who were absolutely crazy about the idea of having a little brother. I remember all Danny talked about was watching football with him and putting his shoes on.. (not so sure what the shoe thing was about but pretty sweet to us). Life was so wonderful, our marriage was perfect our family felt so right!! It’s so hard to explain but things had never seemed so right in life! We were so excited to take him home and we did so on thanksgiving day.
Things were perfect, we settled in well with our new sweet bundle of precious joy. His health continued to be wonderful and at eight weeks old I had to travel out of town for mandatory yearly training in Boston KY. So since I nursed him, he had to travel with me. My husband had gotten laid off from work so he and the three small children went with me while our oldest stayed with my parents being she was the only one in school at the time.
Things were great.. we were on a mini paid vacation-Danny 3 and Ashlynn almost 4 were having a blast. Treston began to become congested and just kept getting worse so on Thursday of that week, my husband took him to ER. They tested him for everything and told him it was just head congestion so to continue as we had been doing with the humidifier and bulb syringe and he should clear up..
We returned home for the weekend only to have to go back the next Monday. In the meantime, Treston seemed to be clearing up while at home but as soon as we returned to the hotel it was back just as bad. Other than that all was well. UNTIL Thursday Jan 28, 2010 at 11:10 when I received a call and it was josh saying “get here now the baby has stopped breathing”.
My wonderful life as I knew it was falling to pieces and I couldn't control it. I arrived at the hotel where my husband was waiting with the other two children as the ambulance had carried our son to the hospital. We arrived at the hospital where I ran to the ambulance entrance and the EMT let me right in. They then took us into the room where he was and walked up to the side of the bed my knees buckled. They were doing CPR and for what seemed like forever but in reality..not so long at all.
They tried only to tell us they were so sorry and at 11:47am the time of death was called for our sweet son. We had to endure a very hard cruel death investigation.. although the detective was very, very sweet. In the end it was SIDS like a thief in the night. it came and stole our sweet baby right from our arms..
**So sorry for your loss April and Josh.. To all of Lily’s readers.. this next part is why Treston is a special, special honorary Heart Angel to me..”
From Treston’s Mom: In our tragedy though we decided that we wanted to give the gift of life to someone else's child so that at Christmas or their birthdays… they weren't crying as we do. We donated Treston's heart valves and would have given more if we were able!!!! I am telling our story so that it might help raise awareness for heart defects and to say how proud I am to know that two children and their families are celebrating each day together. Thank you for taking your time to read our story.. we love and miss our sweet Treston so much!!!
❤ Heart Awareness Month ❤ Meet our next February 28th Heart Warrior Lillian Sophia Smith. She has a Mommy, Daddy, big sister Christine and big brother Emmit!
Lillian’s story as told by her Mommy:
Lillian Sophia Smith was born July 24, 2012. She was 37 weeks and 4 lbs 6 ozs. We found out at our 20 week ultrasound about her heart condition called Hypoplastic Left Heart Syndrome (HLHS).
We knew what was ahead for us. The day after she was born, we were transferred to Boston Children’s hospital because the surgeon at our hospital was concerned about operating on her, due to her small size.
We spent 4 weeks there and had a very successful Norwood (first surgery that babies with HLHS receive usually within the first 10 days of life- my Lily had her Norwood surgery at around 5 days old).
We transferred back to our home hospital for 3 weeks to work on feedings. She had a g-tube placed and was sent home on September 11, 2012. We spent two great months at home. Then on December 12, 2012 we were admitted to our hospital for failure to thrive.
She had a cath and was put on oxygen full time due to Lilly not being able to keep her sats up. We stayed December 12th thru January 28th basically growing and thriving until we transferred back to Boston Children’s Hospital.
She had her Glenn on January 30, 2013 (2nd surgery that babies with HLHS typically receive on average around 4-6 months old). This was a successful surgery but 3 days later, she went into respiratory arrest.
Then 3 days after that… she had a large seizure so we did a CT scan and found that she suffered a stroke on the whole left side of her brain. We are now doing recovery from everything, she is doing great.
We are looking forward to going home soon. You can see more of her story at https://www.facebook.com/LilliansHeartJourney
**My Lily Grace was really Lillian Grace but we called her Lily too.. like this beautiful Lillian also called Lilly! My Lily also had HLHS like this sweet Lilly does.. please visit her page, show her some love, and send some prayers their way!!
❤Meet our February 27th Heart Angel Liam Kent Sugar ❤ Son to Chris and Angie Sugar. Story as told by his Mommy: Liam Kent Sugar born on August 27th 2012 at 9:57am, the son of Chris and Angie Sugar.
At our 20 week ultrasound Liam was diagnosed with a very rare congenital heart defect. Hetertaxy, where his heart formed in reverse position to a normal heart, Along with this he had Dextracardia, Total Anomalous Pulmonary Vein, Pulmonary Stenosis, and only had two functioning chambers.
Liam was brought into this earth via c-section, weighing 6.6lbs and 18 1/2 inches long. after a 2-D echo to confirm final details of his functioning heart, and a Baptism into the Kingdom of God, he was sent into his first of many surgeries.
Liam meaning strong-willed warrior and Kent as in Clark Kent (superman) are the best words to describe our sweet prince. Liam showed admirable strength for such a little boy
He fought hard for 78 amazing days, until The Lord called him to heaven at 6:59pm on the 12th of November 2012. Liam got his wings while in the arms of his mommy and daddy and surrounded by those who loved him dearly.
He is and always will be our angel in heaven watching over us. Chris and I are blessed to have had him in our lives. We have memories of him that no one could ever take away. Such a strong little boy that taught so many, even people that never even met him, the true meaning of life, and love. Also bringing so many back to prayer and reminding all of us what is important in our lives. All the sadness that Chris and I and our family and friends have endured with the loss of Liam was worth it. He was worth it. He is our angel, our miracle, our superhero.
Our journey from the beginning can be followed at polandsugars@blogspot.com.
I shared this story on Lily's Facebook page (Never Forget Lily Grace) and her parents were okay with me sharing it there so I want to share it here: this sweet baby needs prayers!! I have not talked to her parents but there life has to be so hectic right now.. please, please pray for this heart baby!! They had no idea that she had a heart problem until she was 4 months old (must have been right after this picture was taken) and now she needs a heart transplant to live... how scary!!! More testing needs to be done on babies.. more screening could save more babies or at least give them more of a fighting chance!!!
http://www.sbsun.com/news/ci_22659833/untitled
Here is part of their story from that link:
"When Rick and Charity Arnold were eagerly awaiting the birth of their first child last year, they had a whole cheering section of family and friends also waiting to meet little Paisley Mae.
While everyone commented on how perfect the tiny girl was, the Apple Valley twenty-something couple noticed their daughter seemed to have a persistent cough and wheeze.
"They took her to her pediatrician and were told it was nothing to worry about," said Darrell Feuerhahn, Rick Arnold's friend and a fellow San Bernardino County firefighter working out of Hesperia. "Being paramedics, we knew something wasn't right."
On Valentine's Day, during Paisley's four-month check-up, the young parents insisted the physician take notice of Paisley's symptoms.
That's when the parents learned something was wrong with their little girl, said Feuerhahn.
After being taken to Loma Linda University Children Hospital, the Arnolds learned Paisley had an enlarged heart.
"It was a hard thing for them," Feuerhahn said.
Paisley, the smiling 4-month-old, was born without a left coronary artery, which led to the enlarged heart, doctors told the family.
"This isn't something that can be fixed surgically," Feuerhahn said. "She needs a heart transplant."
Please visit her page and pray for this sweet baby and her family!!! https://www.facebook.com/ChangeOfHeartForPaisleyMae
