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
❤ Heart Awareness Month ❤ Meet our February 26th Heart Warrior Oakley. Son to Lauren Powell. Oakley’s story as told by his Mommy: Oakley was born September 20, 2012. The day we were being discharged from the hospital the pediatrician heard a murmur. At one week old, we took Oakley for an echocardiogram, and he was diagnosed with an Atrial Septal Defect (ASD) and Ventricular Septal Defect (VSD). A hole in the wall between the two upper collecting chambers (ASD) or between the two bottom pumping chambers (VSD). We were told the holes were small and would most likely close on their own and not cause any problems.
On October 8, 2012 I took Oakley to the pediatrician. He had stopped eating well over the weekend, and would cry every time I tried to wake him up. He had displayed other symptoms prior to this: high respiratory rate, sweating, being lethargic. My husband and I talked to the on call doctors at the hospital over the weekend, but didn’t seem to put it all together. The pediatrician checked him over; he had lost weight since the week before. I knew this was not good news. His first thought was maybe my milk supply was too low (although this didn’t make any sense, because Oakley had gained about 12 ounces in his first week being home). Finally, it was decided we would take Oakley to the small, local hospital and get him admitted for dehydration and run tests to see what was causing it. Before we left the pediatrician’s office he decided to check Oakley’s pulse ox. As the numbers popped up I saw the 93% (the average person would be closer to 100%).
When we got to the hospital they began running multiple tests on Oakley. Blood, urine, stool, and a chest x-ray were all done. After the pediatrician’s office closed, he came over to the hospital to check out Oakley’s results. This was when we got the scariest news of our lives.
Oakley’s heart was severely enlarged and he was in heart failure. I don’t even remember everything that the pediatrician said. I just remember interrupting him and saying “IS MY BABY GOING TO BE OKAY?!” He told me he wasn’t sure, but that he would definitely have to be transferred to a bigger hospital. Oakley was med-flighted by helicopter, and I was able to fly with him. Upon our arrival to Mercy Hospital Springfield, Oakley was immediately intubated. Once we were finally able to talk to the cardiologist he told us that he suspected a “coarctation of the aortic arch.” (Coarctation of the aorta is a narrowing of the aorta, the main blood vessel carrying oxygen-rich blood from the left ventricle of the heart to all of the organs of the body.) They wanted to wait until morning to get a clearer echo since his heart was so enlarged.
The next evening we decided to transfer Oakley to St. Louis Children’s Hospital. The cardiologists in Springfield were not 100% sure if he had the coarctation or not. Even if he did, they were unable to actually perform surgery at this hospital. By Wednesday morning (October 10th) Oakley was being prepped for surgery at STL Children’s. His surgery went well, though we did find out that he also has a bicuspid aortic valve. (A bicuspid aortic valve is an aortic valve that only has two leaflets, instead of three. The aortic valve regulates blood flow from the heart into the aorta, the major blood vessel that brings blood to the body.)
Oakley is now 5 months old and doing very well, with the exception of slow weight gain. He just had a cardiologist follow up on February 12. His ASD and VSD are closing, and his coarc repair is great. His bicuspid aortic valve is okay for now. Oakley was cleared from follow ups until September.
❤ Heart Awareness Month ❤ Meet our next February 26th Heart Warrior Ethan. Son to Erica Butler Thomas.
Ethan’s story as told by his Mommy:
On February 5, 2012 I was getting ready to take Ethan to his 2 month checkup and noticed he was breathing rapidly and just looked like he was in distress. I immediately called 911 and he was taken to the local hospital as a precaution. I was told over and over that Ethan "looked good", but as his mother, I felt it in my soul that something was wrong.
I dismissed doctor after doctor until someone would listen and take my concern seriously. An echocardiogram was done on his heart and a major heart defect was discovered. Ethan had a severe coarctation of the aorta and a bicuspid valve. An aortic coarctation is a narrowing of part of the aorta (the major artery leading out of the heart). Bicuspid valve: The aortic valve is a one-way valve between the heart and the aorta, the main artery from the heart that distributes oxygen-rich blood to the body. Normally, the aortic valve has three small flaps or leaflets that open widely and close securely to regulate blood flow, allowing blood to flow from the heart to the aorta and preventing blood from flowing backwards into the heart. Ethan's coarctation was so severe that he was immediately medically transported to Texas Children's Hospital in Houston.
Upon arrival, emergency surgery was scheduled for the following morning because he was having heart failure. Ethan's gifted surgical team (Dr. Heinle at Texas Children's Hospital) was able to make the repair to the aorta, but as of today, his heart is not getting stronger. Doctors are running additional test later in the week to see if he suffered a heart attack at some point and if the heart is damaged beyond repair.
It has been discovered that Ethan has a condition called Left ventricular non-compaction (LVNC) as well as an abnormal heart rhythm (long QT line). Left ventricular non-compaction (LVNC) is a rare genetic disease of the heart muscle. Compaction is a process that occurs during the development of the heart when a baby is in the womb. If this process is not complete, the inside of the heart muscle (the one in contact with the blood) will look spongy or “trabeculated”. Normally, it is smooth. Originally, non-compaction was diagnosed very rarely. It seemed to be associated with dangerous heart rhythms and, often, severe weakness of the heart muscle.
As of today we are researching, learning and trying to figure out the world of CHD.
-------------------------------------------------
I asked his Mom Erica if they knew anything about his heart before the day of his 2 month checkup and she said no.. absolutely nothing. They even did a level 2 ultrasound when she was pregnant and it wasn’t caught.
Please show Ethan some love and support by visiting and liking his Facebook page:https://www.facebook.com/ethansspecialheart
**I had one extra heart story to share this month and I decided to share Ethan as the second February 26th heart baby because my son (Lily’s oldest brother).. his name is Ethan and today is his 11th birthday. We will be praying for baby Ethan today and until he gets better!!
