HEARTBEATSforRAVEN A Safe Home for Raven!
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RAVEN has been stable and has not been hospitalized since she received her internal pacemaker in April of 2019 and was discharged from the hospital that very month! This is such an incredible answer to prayer!
The UPDATE on December 26, 2020, gives the remarkable progress that Raven has made along with the very complex medical issues that Raven continues to face. Thank you for your continued prayers, love and support through this challenging journey. God is faithful!
RALLY for 3 Year Old Raven as she has her 9th Heart Surgery on April 23, 2019
Raven’s life-giving surgery to give her an internal pacemaker is THIS TUESDAY, April 23rd. Prayerfully there will not be any more complications and Raven will be back home by the end of May. Including the hospital stay in Boston, Raven has been in the hospital almost 4 months this year.
As you fill your vehicle with gas this week, would you consider funding a tank of gas for Ruthie through GoFundMe? Since mid- February Ruthie has put close to 5000 miles on her 11 year old charger driving to the hospital to be with Raven. At over 200,000 miles, her vehicle has needed multiple repairs to make it through this challenging season. At least another month of daily, and sometimes twice daily, travel to Egleston is expected. Mike makes the trip when he is not working, often driving separately to get back home to be with Piper.
Thank you for all you do to help miracle Raven and her family through this challenging season. Please pray for healing, comfort and peace through the coming days and weeks. It is extremely hard for Ruthie and Mike (and her family) to anticipate all the suffering Raven will experience again to get through this next surgery. Additionally, Piper really misses time with her parents and we praise the Lord for those giving her extra TLC.
Other Opportunities to help include the following:
Gift Cards – Visa/Mastercard; Kroger for Gas/Food; Gas Cards; Chick-fil-a and other restaurant cards
Quick UPDATE Since Post Regarding 5th Heart Surgery in Boston
Raven ended up having 3 heart surgeries in Boston in January 2019. After she returned to Atlanta she developed symptoms of infection. On February 13th she had emergency life-saving surgery at Egleston in Atlanta to remove infection throughout her body (that had even spread to her bones). Raven’s pacemaker had to be removed and she was sustained with her own low heartbeat until she received an external pacemaker. She continued antibiotic therapy for 6 weeks.
Now Raven is healthy enough to have another surgery to receive an internal pacemaker. She has been monitored in the cardiac stepdown unit at Egleston for more than 2 months. She has been doing well and encouraging everyone she meets with her adorable and friendly personality. The staff at Egleston is absolutely incredible!
This next surgery is going to be a rough change for Raven until she can get through the recovery. Thank you for your prayers. The Lord continues to sustain Raven each step of this journey! He is faithful!
News about Raven's 5th Heart Surgery from Ruthie . . .
With very heavy hearts. Mike and I want to let everyone know that we found out some hard news on October 11, 2018. Our Sweet Raven will be having her 5th Open Heart Surgery within the next 4 month's.The narrowing of the aorta has gotten worse very quickly. All her images and results are being sent to Boston Children's. We were really praying she would not have to undergo another open heart surgery. Her anatomy is so different the only way to fix the narrowing is to open her back up. Mike, Piper and I are stronger then ever! We will fight with her and for her no matter what. She has proven she can make it through whatever comes her way. As parents our hearts are broken and we know there is a reason for all this. Please pray for us as we figure out details about getting back to Boston. I will keep u all updated! Your love support and prayers mean so much to us!
Raven will be 3 on December 10th! She is learning to talk, walk, and feed herself. Raven is very engaging. She loves to learn and to be around people. She just got a wheelchair which will be so helpful with travel. Raven loves music, Elmo, and Daniel Tiger.
(Ruthie and Mike hope to hear from Boston about the plans and timing for Raven's surgery sometime around November 1st. They expect to need at least $15,000 for travel and another extended stay there. Funds are being facilitated through GoFundMe and also through Intentional Legacy - a non-profit that gives tax deductible receipts. There is a payment button for Intentional Legacy on FaceBook at HeartbeatsForRaven or contact [email redacted] (Elizabeth Pease, Director).
We will update social media and Raven's GoFundMe page as soon as a surgery date is set. Thank you!
Memories of the First Year of Raven's Life and her Full Heart Repair in Boston on December 1, 2016 . . .
Thank you for asking about ways to contribute toward the growing financial needs related to Raven's care. Specific information is available at the very end of this document telling Raven's Story. Raven Nell Raines was born on December 10, 2015, with critical heart defects.Her parents, Ruthie (Estes) and Mike Raines, anticipated an early delivery and Raven was born a strong 7 lbs. and 10 oz. She was transported from Northside-Forsyth Hospital in Cumming, GA, to the Sibley HeartCenter at Children’s Healthcare of Atlanta at Egleston. She has endured three open heart surgeries inthe first 4½ months of her life. On December 16th, Raven had 7 hours of open heart surgery called the Norwood Procedure, the most complex heart surgery that it is done at Egleston. It was expected that Raven would recover and go home in 4 to 6 weeks;return to the hospital in several months for part 2 of the open heart surgery called The Glenn; and then return again at 2 to 3 years old for part 3 called the Fontan. These surgeries would be steps to giving Raven adequate blood flow throughout her body. However, Raven never recovered enough to leave the hospital. She had several setbacks including a “NEC” intestinal infection on 2 or 3 occasions (common with heart babies) that took 10 to 14 days each to overcome. Because Raven’s feedings and acid reflux were a continual challenge, she had a G-tube surgically inserted for feeding directly to the stomach; at the same time her little esophagus was narrowed at the bottom to prevent acid reflux. (Both procedures are reversible.) In addition to heart and digestive issues, a MRI has indicated that Raven’s spinal cord is not fully developed and that she might have other neurological issues. On March 28th,at almost 4 months old and over 14 lbs., Raven had a second open heart surgery.It was hoped that she could have a full heart repair but because of her complicated anatomy, that was not possible. The next option was the Glenn Surgery with plans to do the Fontan Surgery in about a year. The surgeon proceeded with the Glenn surgery as his only other option.. Raven then only had the use of her right ventricle,not both. Late the very next day, March 29th, Raven was rushed to the operating room for an emergency third open heart surgery.Her body was not tolerating the Glenn Surgery and her stats were dropping so rapidly that it was a life threatening situation. The surgical team reversed the Glenn Surgery and then put in a shunt to help with blood flow. This repair should help for several months when Raven will need more surgery. On April 10th Raven was diagnosed with the Rhinovirus with cold and flu symptoms. The virus usually lasts for 2 to 3 weeks and Ruthie and Mike were told that Raven would be in isolation for at least 2 weeks. Raven’s digestive system continued struggle with formula feeds needing to be diluted. The G-tube that had been surgically put in place several weeks ago had become displaced. The G-tube was surgically placed again. Raven continued to need extra oxygen, especially because of the virus. Each day the medical team tests her on a reduced amount of oxygen, trying to wean this dependence. The week of April 11th was miserable for precious Baby Raven and she continued to be a fighter!She has endured so much more suffering than most people endure in a lifetime! Even with all of her physical problems the sweetness of her heart still shines through. There have been long period of times, when Raven could not be held because of all of the medical lines in her little body. But Raven loves the comfort of touch and voices speaking and singing to her. Just one week after the Rhinovirus was diagnosed, Raven was released from isolation status when the virus was gone! As of today, April 23rd,the medical team is talking about when Raven can finally go to the “Step Down”unit – the next step to going home! Raven has lived her entire 5 months in the CICU surrounded by brilliant and loving health professionals. Ruthie and Mike are incredible parents!Ruthie consistently makes two trips to the hospital every day – a 60 mile round trip from where they live in Alpharetta. When Mike is not working he is there to visit little Raven as well. At home they are busy parenting their delightful and healthy daughter Piper who is almost 2 years old. Their commitment and devotion to their little family is apparent and consistently acknowledged by the hospital staff. Raven has developed an incredibly strong bond with Ruthie and Mike and they get the most smiles! The nurses see a marked difference with Raven’s contentment when they are with her. The financial needs surrounding this medical event are staggering! Even with medical bills covered by insurance, there are large expenses surrounding Raven’s care along with loss of income. Mike works as a professional truck driver and mover as often as he can. He does not have job benefits. The financial needs for basic living expenses are overwhelming including gas for two trips a day to the hospital childcare for Piper, rent, and vehicle maintenance. Funding opportunities are at the close of this document about Raven's Story.
The UPDATE on December 26, 2020, gives the remarkable progress that Raven has made along with the very complex medical issues that Raven continues to face. Thank you for your continued prayers, love and support through this challenging journey. God is faithful!
RALLY for 3 Year Old Raven as she has her 9th Heart Surgery on April 23, 2019
Raven’s life-giving surgery to give her an internal pacemaker is THIS TUESDAY, April 23rd. Prayerfully there will not be any more complications and Raven will be back home by the end of May. Including the hospital stay in Boston, Raven has been in the hospital almost 4 months this year.
As you fill your vehicle with gas this week, would you consider funding a tank of gas for Ruthie through GoFundMe? Since mid- February Ruthie has put close to 5000 miles on her 11 year old charger driving to the hospital to be with Raven. At over 200,000 miles, her vehicle has needed multiple repairs to make it through this challenging season. At least another month of daily, and sometimes twice daily, travel to Egleston is expected. Mike makes the trip when he is not working, often driving separately to get back home to be with Piper.
Thank you for all you do to help miracle Raven and her family through this challenging season. Please pray for healing, comfort and peace through the coming days and weeks. It is extremely hard for Ruthie and Mike (and her family) to anticipate all the suffering Raven will experience again to get through this next surgery. Additionally, Piper really misses time with her parents and we praise the Lord for those giving her extra TLC.
Other Opportunities to help include the following:
Gift Cards – Visa/Mastercard; Kroger for Gas/Food; Gas Cards; Chick-fil-a and other restaurant cards
Quick UPDATE Since Post Regarding 5th Heart Surgery in Boston
Raven ended up having 3 heart surgeries in Boston in January 2019. After she returned to Atlanta she developed symptoms of infection. On February 13th she had emergency life-saving surgery at Egleston in Atlanta to remove infection throughout her body (that had even spread to her bones). Raven’s pacemaker had to be removed and she was sustained with her own low heartbeat until she received an external pacemaker. She continued antibiotic therapy for 6 weeks.
Now Raven is healthy enough to have another surgery to receive an internal pacemaker. She has been monitored in the cardiac stepdown unit at Egleston for more than 2 months. She has been doing well and encouraging everyone she meets with her adorable and friendly personality. The staff at Egleston is absolutely incredible!
This next surgery is going to be a rough change for Raven until she can get through the recovery. Thank you for your prayers. The Lord continues to sustain Raven each step of this journey! He is faithful!
News about Raven's 5th Heart Surgery from Ruthie . . .
With very heavy hearts. Mike and I want to let everyone know that we found out some hard news on October 11, 2018. Our Sweet Raven will be having her 5th Open Heart Surgery within the next 4 month's.The narrowing of the aorta has gotten worse very quickly. All her images and results are being sent to Boston Children's. We were really praying she would not have to undergo another open heart surgery. Her anatomy is so different the only way to fix the narrowing is to open her back up. Mike, Piper and I are stronger then ever! We will fight with her and for her no matter what. She has proven she can make it through whatever comes her way. As parents our hearts are broken and we know there is a reason for all this. Please pray for us as we figure out details about getting back to Boston. I will keep u all updated! Your love support and prayers mean so much to us!
Raven will be 3 on December 10th! She is learning to talk, walk, and feed herself. Raven is very engaging. She loves to learn and to be around people. She just got a wheelchair which will be so helpful with travel. Raven loves music, Elmo, and Daniel Tiger.
(Ruthie and Mike hope to hear from Boston about the plans and timing for Raven's surgery sometime around November 1st. They expect to need at least $15,000 for travel and another extended stay there. Funds are being facilitated through GoFundMe and also through Intentional Legacy - a non-profit that gives tax deductible receipts. There is a payment button for Intentional Legacy on FaceBook at HeartbeatsForRaven or contact [email redacted] (Elizabeth Pease, Director).
We will update social media and Raven's GoFundMe page as soon as a surgery date is set. Thank you!
Memories of the First Year of Raven's Life and her Full Heart Repair in Boston on December 1, 2016 . . .
Thank you for asking about ways to contribute toward the growing financial needs related to Raven's care. Specific information is available at the very end of this document telling Raven's Story. Raven Nell Raines was born on December 10, 2015, with critical heart defects.Her parents, Ruthie (Estes) and Mike Raines, anticipated an early delivery and Raven was born a strong 7 lbs. and 10 oz. She was transported from Northside-Forsyth Hospital in Cumming, GA, to the Sibley HeartCenter at Children’s Healthcare of Atlanta at Egleston. She has endured three open heart surgeries inthe first 4½ months of her life. On December 16th, Raven had 7 hours of open heart surgery called the Norwood Procedure, the most complex heart surgery that it is done at Egleston. It was expected that Raven would recover and go home in 4 to 6 weeks;return to the hospital in several months for part 2 of the open heart surgery called The Glenn; and then return again at 2 to 3 years old for part 3 called the Fontan. These surgeries would be steps to giving Raven adequate blood flow throughout her body. However, Raven never recovered enough to leave the hospital. She had several setbacks including a “NEC” intestinal infection on 2 or 3 occasions (common with heart babies) that took 10 to 14 days each to overcome. Because Raven’s feedings and acid reflux were a continual challenge, she had a G-tube surgically inserted for feeding directly to the stomach; at the same time her little esophagus was narrowed at the bottom to prevent acid reflux. (Both procedures are reversible.) In addition to heart and digestive issues, a MRI has indicated that Raven’s spinal cord is not fully developed and that she might have other neurological issues. On March 28th,at almost 4 months old and over 14 lbs., Raven had a second open heart surgery.It was hoped that she could have a full heart repair but because of her complicated anatomy, that was not possible. The next option was the Glenn Surgery with plans to do the Fontan Surgery in about a year. The surgeon proceeded with the Glenn surgery as his only other option.. Raven then only had the use of her right ventricle,not both. Late the very next day, March 29th, Raven was rushed to the operating room for an emergency third open heart surgery.Her body was not tolerating the Glenn Surgery and her stats were dropping so rapidly that it was a life threatening situation. The surgical team reversed the Glenn Surgery and then put in a shunt to help with blood flow. This repair should help for several months when Raven will need more surgery. On April 10th Raven was diagnosed with the Rhinovirus with cold and flu symptoms. The virus usually lasts for 2 to 3 weeks and Ruthie and Mike were told that Raven would be in isolation for at least 2 weeks. Raven’s digestive system continued struggle with formula feeds needing to be diluted. The G-tube that had been surgically put in place several weeks ago had become displaced. The G-tube was surgically placed again. Raven continued to need extra oxygen, especially because of the virus. Each day the medical team tests her on a reduced amount of oxygen, trying to wean this dependence. The week of April 11th was miserable for precious Baby Raven and she continued to be a fighter!She has endured so much more suffering than most people endure in a lifetime! Even with all of her physical problems the sweetness of her heart still shines through. There have been long period of times, when Raven could not be held because of all of the medical lines in her little body. But Raven loves the comfort of touch and voices speaking and singing to her. Just one week after the Rhinovirus was diagnosed, Raven was released from isolation status when the virus was gone! As of today, April 23rd,the medical team is talking about when Raven can finally go to the “Step Down”unit – the next step to going home! Raven has lived her entire 5 months in the CICU surrounded by brilliant and loving health professionals. Ruthie and Mike are incredible parents!Ruthie consistently makes two trips to the hospital every day – a 60 mile round trip from where they live in Alpharetta. When Mike is not working he is there to visit little Raven as well. At home they are busy parenting their delightful and healthy daughter Piper who is almost 2 years old. Their commitment and devotion to their little family is apparent and consistently acknowledged by the hospital staff. Raven has developed an incredibly strong bond with Ruthie and Mike and they get the most smiles! The nurses see a marked difference with Raven’s contentment when they are with her. The financial needs surrounding this medical event are staggering! Even with medical bills covered by insurance, there are large expenses surrounding Raven’s care along with loss of income. Mike works as a professional truck driver and mover as often as he can. He does not have job benefits. The financial needs for basic living expenses are overwhelming including gas for two trips a day to the hospital childcare for Piper, rent, and vehicle maintenance. Funding opportunities are at the close of this document about Raven's Story.
Organizer
Loveourlilfamily Raines Estes
Organizer
Alpharetta, GA