In my book, all heart moms are heros. They advocate for their child when they are newborns and continue to do so throughout their lives.
In Lorelei's life, I believe she has at least 3 heros.
1. Dr. Luke Bonnett, Chapin Pediatrics
He heard a murmur in her heart the morning after she was born and he decided that if it was still there the next morning he was going to get an ECHO just to make sure nothing was going on. Well, obviously, he still heard the murmur and we got an ECHO done. The ECHO showed her heart defect. I thank God everyday for this man since he heard the murmur and saved my child's life.
2. Dr. Osbourne Shuler, University Pediatrics Cardiology
He was on call the weekend that Lo was born and he came in to explain to us what her defect was and what was going to happen. I love the compassion he has for his patients and their parents. He always explains everything that is needed but also makes sure that you don't miss a thing in your child's life. I know that God sent him our way to be Lo's doctor.
3. Dr. Scott Bradley, MUSC Children's Hospital
Our daughter's surgeon that has saved her life twice! He is a great surgeon. He takes his time with his patients and makes sure that all is done well! I know that God works through him to save children!
Lorelei has other heros in her life like the nurses at Chapin Pediatrics (Karen, Candi, Tina and Tara), even though they give her shots :O), the nurses and ECHO techs at University Pediatrics Cardiology, even though she gives them a hard time EVERY time we are in there, and the nurses, occupational therapists, respitory therapists, fellows, child life specialists and anyone else who came in contact with Lo at MUSC. We thank you from the bottom of our hearts for taking care of Lorelei the way you do!
Sunday, February 7, 2010
Friday, February 5, 2010
Our Heart Journey Thus Far
April 20, 2008
The nurses were trying to help me nurse, Lo wasn't latching on, we had visitors and then the phone call came from Dr. Bonnett. All I really remember about it is that he said there was a problem with her heart and the Pediatric Cardiologist would be coming to talk to us about it. The nurses came in and whisked her off to the NICU.
Those few hours after we met with Dr. Shuler before she was flown to MUSC were the longest ever. When John and I got up to see her in the NICU I wasn't prepared. She was fussy and had lines coming out of her bellybutton and we couldn't hold her. The flight crew had just gotten there and were getting ready to take her in her little incubator and fly her away. (I'm getting teary just writing this.)
That night I called down to the PCICU at MUSC and they told me she was fine. I could hardly sleep and couldn't wait to get out of the hospital. I broke free the next morning and John and I, my mom and her friend drove down to Charleston to see Lo. She was in her little bed and we couldn't do anything. She had IVs and lines and was swaddled. She wouldn't take a paci, only if it had sugar water on it. John's parents started driving down to SC that morning and got into Charleston at 10pm that night. John took them over to see her. It was sad that the first time they saw their granddaughter was in PCICU. They stayed with us that week while we waited for a surgery day.
April 24, 2008
Surgery day. We were able to hold her again before she went to surgery. It was so good to have her in my arms. Then I had to watch them wheel her away to surgery. Her anesthesiology nurse looked like Meredith Grey from Grey's Anatomy so I thought she was ok. :O)
She did well through surgery and moved up to 7C. We learned all about our new baby and how to feed, diaper, bath, etc. Finally May 1, we were able to come home.
We saw her pediatrician, and her cardiologist and saw her cardiologist every 3 months. She did well throughout the year. December was rough and we were in the hospital for RSV and then after Christmas she had the stomach bug.
June 2009
Dr. Shuler, her cardiologist, thought that she might need a sedated ECHO to check out the function of her heart. We went down to MUSC July 9 to have it done. They decided that she would have to have another surgery because her aortic valve was not growing very much and she had some extra tissue that needed to be cut out. We were worried that she would have to have something called the Ross Procedure but they didn't have to do that. The surgeon would have to go and cut out the extra tissue.
September 21, 2009
Lorelei's second surgery. My mom and John's parents were there again and again she came through just fine. We went in to see her the next day and she was still intubated but trying to wake up. She would cough with no sound and I had to leave the room at that point. It was terrible. Finally the extubated her and John's mom held her most of that day. She was very uncomfortable and I think we finally realized that she was cold. She spent the week in PCICU because there was no room available on 7C. We were discharged from PCICU that Friday, so all in all we spent 5 days there, much shorter then the first time.
She is continuing to do well and we will go to Dr. Shuler Feb 17 for her next appointment. They will still continue to monitor her valve and make sure the growth isn't growing back. If her valve doesn't grow or the tissue grows back she will probably have to have the Ross Procedure.
She still has night terrors and hasn't slept through the night since her surgery. We have tried really hard to just let her cry it out but sometimes its just heart wrenching. I am sure there will be more ups and downs with her heart but for right now we are looking up, but we are still praying for others that are awaiting surgery or might need surgery in the near future.
We didn't know that our child had a heart defect when she was born and there are many people that had the same thing happen but they went home and their children had to be brought back to the hospital before they knew what was going on. This is why we need to raise money for CHD research. If we could save one more family from having to go through this heartbreak, it would be worth it.
The nurses were trying to help me nurse, Lo wasn't latching on, we had visitors and then the phone call came from Dr. Bonnett. All I really remember about it is that he said there was a problem with her heart and the Pediatric Cardiologist would be coming to talk to us about it. The nurses came in and whisked her off to the NICU.
Those few hours after we met with Dr. Shuler before she was flown to MUSC were the longest ever. When John and I got up to see her in the NICU I wasn't prepared. She was fussy and had lines coming out of her bellybutton and we couldn't hold her. The flight crew had just gotten there and were getting ready to take her in her little incubator and fly her away. (I'm getting teary just writing this.)
That night I called down to the PCICU at MUSC and they told me she was fine. I could hardly sleep and couldn't wait to get out of the hospital. I broke free the next morning and John and I, my mom and her friend drove down to Charleston to see Lo. She was in her little bed and we couldn't do anything. She had IVs and lines and was swaddled. She wouldn't take a paci, only if it had sugar water on it. John's parents started driving down to SC that morning and got into Charleston at 10pm that night. John took them over to see her. It was sad that the first time they saw their granddaughter was in PCICU. They stayed with us that week while we waited for a surgery day.
April 24, 2008
Surgery day. We were able to hold her again before she went to surgery. It was so good to have her in my arms. Then I had to watch them wheel her away to surgery. Her anesthesiology nurse looked like Meredith Grey from Grey's Anatomy so I thought she was ok. :O)
She did well through surgery and moved up to 7C. We learned all about our new baby and how to feed, diaper, bath, etc. Finally May 1, we were able to come home.
We saw her pediatrician, and her cardiologist and saw her cardiologist every 3 months. She did well throughout the year. December was rough and we were in the hospital for RSV and then after Christmas she had the stomach bug.
June 2009
Dr. Shuler, her cardiologist, thought that she might need a sedated ECHO to check out the function of her heart. We went down to MUSC July 9 to have it done. They decided that she would have to have another surgery because her aortic valve was not growing very much and she had some extra tissue that needed to be cut out. We were worried that she would have to have something called the Ross Procedure but they didn't have to do that. The surgeon would have to go and cut out the extra tissue.
September 21, 2009
Lorelei's second surgery. My mom and John's parents were there again and again she came through just fine. We went in to see her the next day and she was still intubated but trying to wake up. She would cough with no sound and I had to leave the room at that point. It was terrible. Finally the extubated her and John's mom held her most of that day. She was very uncomfortable and I think we finally realized that she was cold. She spent the week in PCICU because there was no room available on 7C. We were discharged from PCICU that Friday, so all in all we spent 5 days there, much shorter then the first time.
She is continuing to do well and we will go to Dr. Shuler Feb 17 for her next appointment. They will still continue to monitor her valve and make sure the growth isn't growing back. If her valve doesn't grow or the tissue grows back she will probably have to have the Ross Procedure.
She still has night terrors and hasn't slept through the night since her surgery. We have tried really hard to just let her cry it out but sometimes its just heart wrenching. I am sure there will be more ups and downs with her heart but for right now we are looking up, but we are still praying for others that are awaiting surgery or might need surgery in the near future.
We didn't know that our child had a heart defect when she was born and there are many people that had the same thing happen but they went home and their children had to be brought back to the hospital before they knew what was going on. This is why we need to raise money for CHD research. If we could save one more family from having to go through this heartbreak, it would be worth it.
Tomorrow
I am very excited to blog about tomorrow's events. I probably won't blog until Sunday because I have to be at Fatz at 6:45am! Oh tiredness! Then I will come home to turn around and go to Columbia for the conference, so we probably won't be home until 6 at the earliest! LONG DAY!
Breakfast and CHD Conference
Tomorrow is going to be a big day! We are doing the breakfast at Fatz Cafe to raise money for CHD Research, tickets are still available and even if you don't get tickets you can still come out tomorrow! Then we are going to the first CHD Conference with our Palmetto Hearts pals! John and I are really looking forward to this!
By the way, in the new picture at the top, Lo is saying "Cheese" and yes she has a PAID sticker on her from Bi-Lo, even though she's not really paid off yet :O)!
By the way, in the new picture at the top, Lo is saying "Cheese" and yes she has a PAID sticker on her from Bi-Lo, even though she's not really paid off yet :O)!
Wednesday, February 3, 2010
Heart Buddies
Lorelei and Derrick. Lo giving D a hug. When he would get fussy, she would pat him like a dog to make him feel better. She tried people, she tried.
Lorelei telling D that he is a Dr. now.
She let him use her stethescope, since she knows that he knows how to use it.
Derrick is our friends' Justin and Shannon's little boy. He has HLHS, Dextrocardia, Transposition of the Great Arteries, VSD among other things. He just had his second surgery and is recovering well. Lorelei is still trying to get the concept of 'gentle'.
Prayers are needed for our friend Zeb. He is another Heart Buddy of Lo's that is going to have to have surgery ASAP. He is going to have to have the Ross Procedure, which is what Lo is going to have to have if her valve doesn't grow or the obstruction grows back. Please pray for his family as the knew it was a possibility but they weren't expecting it to be THIS fast!
Tuesday, February 2, 2010
Birthdays and Anniversaries for February!
John, Lorelei and I want to wish a very Happy Birthday to those who are having birthdays this month!
HAPPY BIRTHDAY to:
Beth Wilson (John's Aunt)
Jennifer Ford (John's Cousin)
Dylan Wilson (John's Cousin's son)
Rick Wilson (John's Uncle)
Scott Risher (John's Cousin's Husband)
Joe Wilson (John's Uncle)
Honey Socci (my Dad's Fiance)
Jenny Loysen (my Cousin)
Jewel Hanson (John's Cousin)
and
Asher DeMatteo (John's Cousin's son)
HAPPY ANNIVERSARY to:
Paul and Joan Wilson (John's Uncle and Aunt)
and
Tom and Jeanne Friedel (John's Parents) ~ Congratulations on 34 years of marriage!
Stay tuned because this month I am going to bring you through our Heart Journey so far (since it is National Heart Month) and highlighting places, people, events and websites that have helped us or joined us on our journey. I will introduce you to people and blogs that have become our friends and some that I just read about! I am excited to take you through this journey that has become our 'normal'.
Leaving you with some statistics that I took from the American Heart Association's website:
3,531 people in the United States died from congenital cardiovascular defects in 2005. At least 15 types of cardiovascular defects are recognized, with many additional anatomic variations.
HAPPY BIRTHDAY to:
Beth Wilson (John's Aunt)
Jennifer Ford (John's Cousin)
Dylan Wilson (John's Cousin's son)
Rick Wilson (John's Uncle)
Scott Risher (John's Cousin's Husband)
Joe Wilson (John's Uncle)
Honey Socci (my Dad's Fiance)
Jenny Loysen (my Cousin)
Jewel Hanson (John's Cousin)
and
Asher DeMatteo (John's Cousin's son)
HAPPY ANNIVERSARY to:
Paul and Joan Wilson (John's Uncle and Aunt)
and
Tom and Jeanne Friedel (John's Parents) ~ Congratulations on 34 years of marriage!
Stay tuned because this month I am going to bring you through our Heart Journey so far (since it is National Heart Month) and highlighting places, people, events and websites that have helped us or joined us on our journey. I will introduce you to people and blogs that have become our friends and some that I just read about! I am excited to take you through this journey that has become our 'normal'.
Leaving you with some statistics that I took from the American Heart Association's website:
3,531 people in the United States died from congenital cardiovascular defects in 2005. At least 15 types of cardiovascular defects are recognized, with many additional anatomic variations.
- Thousands of babies are born each year with cardiovascular defects. Of these,
- 4–10 percent have atrioventricular septal defects.
- 8–11 percent have coarctation of the aorta.
- 9–14 percent have tetralogy of Fallot.
- 10–11 percent have transposition of the great arteries.
- 14–16 percent have ventricular (ven-TRIK'u-ler) septal defects.
- 4–8 percent have hypoplastic left heart syndrome.
- About 650,000 to 1,300,000 people in the United States with cardiovascular defects are alive today.
- 2006 death rates per 100,000 adults for congenital cardiovascular defects were 1.3 for white males, 1.7 for black males, 1.0 for white females and 1.3 for black females.
- Infant death rates (under 1 year) are 36.5 per 100,000 white infants and 52.5 per 100,000 black infants.
- From 1996 to 2006 death rates for congenital cardiovascular defects declined 33.3 percent, while the actual number of deaths declined 26.7 percent.
Monday, February 1, 2010
February
Along with Valentine's Day, the Super Bowl, the Daytona 500 and Mardi Gras/Fat Tuesday/Ash Wednesday do you know what else February is known for???
IT'S NATIONAL HEART MONTH!
February 5 is National Wear Red Day and February 7-14 is National Congenital Heart Defect Awareness Week!
This month we are going to be throwing a breakfast at Fatz Cafe in Irmo on Broad River Rd to help raise money for research! Email me at jessaro77@yahoo.com if you need tickets or just want to donate :O)
Also, John and I will be attending the first ever CHD Conference. We are so excited about hearing from great speakers and seeing people we haven't seen in a while! No kiddies allowed, so adult time it is!
I will leave you with this little fact, 1 in 85 children are born with some sort of heart defect!
IT'S NATIONAL HEART MONTH!
February 5 is National Wear Red Day and February 7-14 is National Congenital Heart Defect Awareness Week!
This month we are going to be throwing a breakfast at Fatz Cafe in Irmo on Broad River Rd to help raise money for research! Email me at jessaro77@yahoo.com if you need tickets or just want to donate :O)
Also, John and I will be attending the first ever CHD Conference. We are so excited about hearing from great speakers and seeing people we haven't seen in a while! No kiddies allowed, so adult time it is!
I will leave you with this little fact, 1 in 85 children are born with some sort of heart defect!
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