I've recently come in contact with one amazing couple who have endured (and are still enduring) a great deal. I ask that you lift Jenna, Brent, and Baby Avery up that God may heal this child and grant them their deep desire for a very special child. I feel that God made a special connection here between Jenna and I, and hope that He gives her the same peace and strength that he gave me through my experience with my own Avery. Avery, Jenna and Brent's unborn child, has a large cystic hygroma and has been diagnosed with TS. They have also been told she will have heart issues. You can read more about this family and keep up with their journey on their blog: http://www.brentandjennaspears.blogspot.com/.
The link is listed on the CHH sidebar.
Pray, pray, pray!
Friday, February 25, 2011
Sunday, February 20, 2011
Blankets for Batson!
This weekend I had the pleasure of sharing a bit of our story and my testimony with Disciple Now teens at Truitt Memorial Baptist Church. The girls participated in the Cross Healed Heart blanket ministry for Blair E. Batson Children's Hospital. As posted previously, these blankets are given to infant heart patients in PICU and/or expectant mothers carrying babies with CHD that may not have surgery right away. We started with material for 54 blankets, and the group worked so hard, that we completed 50 blankets to take to Batson this week!! A special thanks to Amy Martin for giving me the opportunity to do this, and Truitt Memorial Baptist Church for allowing me to use their facility, as well as donating funds for materials. Like I have said before, God has provided things time and time again to allow me to do this ministry in His honor, and I am so thankful for all the support that has been sent my way lately- it is truly amazing!
We worked at Truitt Memorial from 10:30 A.M. to 3:00 P.M. on Saturday.
Here is the table, set up with all of the materials we needed to make blankets, along with a sign in sheet for my scrapbook.
This is one of my wonderful students at PUE, Victoria Lawrence. Victoria is an ace at making these blankets, and gave up her time on a Saturday (in between soccer games) to come help me with this project. She even makes blankets for me in her spare time at home. She has such a big heart, and I appreciate her so very much! I'd also like to thank her mom, Gena, for encouraging her to help and providing her with transportation- thank you Mrs. Lawrence!!
I gave the simple directions, assisted by my awesome helper, Victoria, and everyone got busy cutting and tying knots!
At the end of the day, we reached our goal of 50 blankets!
John 15:12
“This is my commandment, that you love one another as I have loved you."
Hebrews 13:16
"Do not neglect to do good and to share what you have, for such sacrifices are pleasing to God."
Luke 6:38
"Give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.”
Philippians 2:4
"Let each of you look not only to his own interests, but also to the interests of others."
Monday, February 14, 2011
Prayers for Sydney!
Please keep little Sydney and her family in your prayers, especially during the next few weeks. Sydney will go in Wednesday for another open heart surgery. She has been to the cath lab twice to get her pulmonary arteries ballooned in the last year, with limited success. The plan is to put adult-size stents in both of her pulmonary arteries. These stents will stay there forever, and be adjusted as needed by Dr. Ebeid in the cath lab. Typically, a stent is put in in the cath lab, but these are too big, and would cause permanent damage to Sydney if done that way. The procedure is called the 'Hybrid' procedure, Dr. Ebeid and Dr. Salazar will both be in the OR. Sydney will be place on bypass for this 4-8 hour surgery, but they do not plan on stopping her heart as they did in her previous surgery. They are also going to be looking at her aortic stenosis. This is very common in children that have William's Syndrome. If this problem gets any worse, then Sydney may need a valve replacement. They will also be checking out her arch(first operation)and her ASD(a small hole in the top two ventricles).
Sydney and my Avery seem to have a lot in common, and we were in a very similar place this time last year! Prayer is what makes the difference, so please, PLEASE, PRAY!
Mom and dad will keep updates on their caring bridge page at this link:
http://www.caringbridge.org/visit/sydneymead
Monday, February 7, 2011
CHD Sweethearts!
In honor of CHD Awareness Week and American Heart Month, I wanted to share some of God's miracles with you! Believe me, they have a lot of "heart"- enjoy!!
Mr. Christian
Mr. Ian
Miss Caroline
Mr. Cameron
Mr. C.J.
Miss Abbygale
Mr. Joshua
Miss Avery
Mr. Cain
Miss Caylen
Miss Sydney
Miss Riley
Mr. Raef
Miss Lauren
Don't forget to keep them in your prayers! ♥
CHD Awareness Facts
February 7-14, 2011 is CHD Awareness Week!
•Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
•Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
•About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
•Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
•The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
•This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
•The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
•Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
•Though research is ongoing, at least 35 defects have now been identified.
•4-8% born with CHD have Hypoplastic Left Heart Syndrome
•4-10% born with CHD have Atrioventricular Septal Defects
•8-11% born with CHD have Coarctation of the Aorta
•9-14% born with CHD have Tetralogy of Fallot
•10-11% born with CHD have Transposition of the Great Arteries
•14-16% born with CHD have Ventricular Septal Defects
•Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
•It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
This information taken from http://www.itsmyheart.org/chd-information/chd-facts/
•Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
•Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
•About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
•Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
•The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
•This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
•The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
•Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
•Though research is ongoing, at least 35 defects have now been identified.
•4-8% born with CHD have Hypoplastic Left Heart Syndrome
•4-10% born with CHD have Atrioventricular Septal Defects
•8-11% born with CHD have Coarctation of the Aorta
•9-14% born with CHD have Tetralogy of Fallot
•10-11% born with CHD have Transposition of the Great Arteries
•14-16% born with CHD have Ventricular Septal Defects
•Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
•It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
This information taken from http://www.itsmyheart.org/chd-information/chd-facts/
Saturday, February 5, 2011
CHH Hair Pins and Clips!
CHH hair pins and clips are now on sale at Private Collection in Madison, MS. Clips are $3 each and proceeds go to heart pillows and blankets for pediatric heart patients at Blair E. Batson Hospital. Their are a variety of styles, with hearts in honor of our heart kids, butterflies in honor of our TS girls, and crosses in honor of the One who looks over them! We hope to have them in a Vicksburg location soon! Thanks for the support!
A very special thank you to Private Collection for helping us out-
visit them today! ♥
You can visit Private Collection at:
101A Village Blvd
Madison, MS 39110
Phone: 601-607-6004
Visit their blog at:
http://www.merchantcircle.com/blogs/Private.Collection.601-607-6004
Tuesday, February 1, 2011
The Amazing Rosanna Mae
In reading one another's stories, we really see how much we all have in common. We go through so many of the same emotions and thoughts while shedding tears of sadness then joy for what we love beyond measure. It reminds me why sharing is so important. We are not alone in facing these trials, not only is God with us, others truly understand what we're going through.
Rosie's Story
At 12 weeks pregnant, in November 2009, I went to my local hospital for a scan. I went on my own as my husband, Alan, and I didn’t think there was much need for him to take the day off work as the 12 week scan just confirms the date usually. With two healthy children, Joshua aged 5 and Matthew aged 4, we were not expecting any problems with this pregnancy.
During the scan, the sonographer was silent. As the minutes ticked by, I knew something was wrong. Various problems ran through my mind but nothing prepared me for the moment when the sonographer turned to me and said that the fetus has a large cyst at the back of the head and neck which means it isn’t likely to survive much longer. I was devastated. I couldn’t believe that something like this was happening to me. I asked if there was any chance for the baby, but was told that I would probably miscarry within a few days as most pregnancies like this end before 13 weeks, but certainly within a few weeks. My options were to terminate the pregnancy or wait for a miscarriage.
As soon as I left the hospital I broke down, I couldn‘t stop crying. I couldn’t believe my baby was going to die. It just didn’t seem real. Once I was home I told my husband, and started searching online for information about the cyst and discovered it was most likely something called a cystic hygroma. On its own, it seemed like the baby might have a small chance of surviving. According to what I read though, a baby with a cystic hygroma often develops fetal hydrops, a condition described as 99 to 100% fatal. My husband and I started praying that the baby didn’t develop hydrops and so would have a chance of surviving. I began to feel hopeful, that maybe things weren’t as desperate as they first appeared.
A couple of days later, we stopped by the local hospital to pick up my notes for a trip to a bigger hospital where a CVS test would be carried out. On those notes was the diagnosis -cystic hygroma measuring 17.5mm observed on scan, fetal hydrops also present. I broke down again. I just couldn’t believe it. We had spent all weekend praying that the baby didn’t develop hydrops, but it was too late. The baby was already hydropic, we just hadn’t been told about it. To make matters worse, the CVS couldn’t be carried out because the baby was in front of the placenta. The consultant at the hospital said it was not likely that the baby would last much longer, and told us that there was less than a 5% chance of survival. At this point I felt there was no hope for the baby, and I was sure that I wouldn’t be pregnant for much longer.
Despite expectations, two weeks later the baby was still alive, so we returned to the hospital for an amniocentesis. By now, the cystic hygroma had grown to over 22mm, and she was severely hydropic with fluid built up in the chest, abdomen, limbs and under the skin all over the body
The day before Christmas Eve, we found out that the baby had Turner Syndrome. We were pleased with this news, it meant we were having a little girl and after finding Rosie Foster’s website which shares stories of other babies who have survived after a similar prenatal diagnosis to our baby we knew the baby DID have a chance of surviving. After this we had fortnightly scans to check if the baby was still alive, and to see what condition she was in.
At 20 weeks, a scan showed her heart beating away still. A joyful moment! Reaching the half way mark felt like a great achievement. Although, new problems presented themselves including an echogenic bowel which later resolved, a mass of tissue in the hygroma (which had now grown to 65mm) thought to be from fluid leaking from the spine or brain but which also resolved itself and a low level of amniotic fluid which persisted.
At 22 and 28 weeks, we returned to the consultant who diagnosed the baby with a heart problem, co-arctation of the aorta. We were told that she would need a heart operation when she was a few days old to correct it. After that, our consultant appointments were transferred to a larger hospital which had the facilities to deal with heart problems. At the same time, we received the good news that the baby no longer had fetal hydrops! The fluid in the chest and abdomen had resolved itself with only the fluid under the skin remaining!
At 38 weeks, on the 26th May 2010, I was given a c-section because the baby was breech. The sound of her crying was just amazing, I couldn’t believe she was really here and I could hear her! She was rushed away to the special care unit and then later on to the children’s hospital. The diagnosis of Turner Syndrome was confirmed, and we were informed that she also had a cleft palate. However, three scans of her heart showed that while her heart was abnormally structured, the co-arctation of the aorta was no longer present and she did not require heart surgery! After nine days, she was discharged from hospital and we took her home. I can’t even describe how amazing it was to walk out of that hospital with my little girl, alive and well!
We have named her Rosanna Mae, Rosie for short.
At four months old, Rosie had to have heart surgery because the structure of her heart, which hadn’t been expected to cause problems, was affecting her breathing. She has right aortic arch with retro oesophageal continuation. While preparing for this surgery, the consultant discovered another heart problem, where some blood vessels from the lungs are pushing blood the wrong way, into the vessels returning from the brain (I think! I don’t know the name of the condition and information given about it has been a little sketchy). It was decided to go ahead with the planned surgery, and she will return for open heart surgery to correct the newly discovered problem in a few years.
This month (at eight months old) Rosie will be having her cleft palate repaired, which will hopefully improve her feeding ability which at present is very limited.
Rosie is a healthy happy little girl, who gives us great joy and happiness and we are so grateful to God that Rosie survived. She has developmental delays, and a few small problems such as impaired hearing and difficulty gaining weight, but it is nothing serious and we are very proud of her our precious little girl.
By: Laura Dawson
Rosie's Story
At 12 weeks pregnant, in November 2009, I went to my local hospital for a scan. I went on my own as my husband, Alan, and I didn’t think there was much need for him to take the day off work as the 12 week scan just confirms the date usually. With two healthy children, Joshua aged 5 and Matthew aged 4, we were not expecting any problems with this pregnancy.
During the scan, the sonographer was silent. As the minutes ticked by, I knew something was wrong. Various problems ran through my mind but nothing prepared me for the moment when the sonographer turned to me and said that the fetus has a large cyst at the back of the head and neck which means it isn’t likely to survive much longer. I was devastated. I couldn’t believe that something like this was happening to me. I asked if there was any chance for the baby, but was told that I would probably miscarry within a few days as most pregnancies like this end before 13 weeks, but certainly within a few weeks. My options were to terminate the pregnancy or wait for a miscarriage.
As soon as I left the hospital I broke down, I couldn‘t stop crying. I couldn’t believe my baby was going to die. It just didn’t seem real. Once I was home I told my husband, and started searching online for information about the cyst and discovered it was most likely something called a cystic hygroma. On its own, it seemed like the baby might have a small chance of surviving. According to what I read though, a baby with a cystic hygroma often develops fetal hydrops, a condition described as 99 to 100% fatal. My husband and I started praying that the baby didn’t develop hydrops and so would have a chance of surviving. I began to feel hopeful, that maybe things weren’t as desperate as they first appeared.
A couple of days later, we stopped by the local hospital to pick up my notes for a trip to a bigger hospital where a CVS test would be carried out. On those notes was the diagnosis -cystic hygroma measuring 17.5mm observed on scan, fetal hydrops also present. I broke down again. I just couldn’t believe it. We had spent all weekend praying that the baby didn’t develop hydrops, but it was too late. The baby was already hydropic, we just hadn’t been told about it. To make matters worse, the CVS couldn’t be carried out because the baby was in front of the placenta. The consultant at the hospital said it was not likely that the baby would last much longer, and told us that there was less than a 5% chance of survival. At this point I felt there was no hope for the baby, and I was sure that I wouldn’t be pregnant for much longer.
Despite expectations, two weeks later the baby was still alive, so we returned to the hospital for an amniocentesis. By now, the cystic hygroma had grown to over 22mm, and she was severely hydropic with fluid built up in the chest, abdomen, limbs and under the skin all over the body
The day before Christmas Eve, we found out that the baby had Turner Syndrome. We were pleased with this news, it meant we were having a little girl and after finding Rosie Foster’s website which shares stories of other babies who have survived after a similar prenatal diagnosis to our baby we knew the baby DID have a chance of surviving. After this we had fortnightly scans to check if the baby was still alive, and to see what condition she was in.
At 20 weeks, a scan showed her heart beating away still. A joyful moment! Reaching the half way mark felt like a great achievement. Although, new problems presented themselves including an echogenic bowel which later resolved, a mass of tissue in the hygroma (which had now grown to 65mm) thought to be from fluid leaking from the spine or brain but which also resolved itself and a low level of amniotic fluid which persisted.
At 22 and 28 weeks, we returned to the consultant who diagnosed the baby with a heart problem, co-arctation of the aorta. We were told that she would need a heart operation when she was a few days old to correct it. After that, our consultant appointments were transferred to a larger hospital which had the facilities to deal with heart problems. At the same time, we received the good news that the baby no longer had fetal hydrops! The fluid in the chest and abdomen had resolved itself with only the fluid under the skin remaining!
At 38 weeks, on the 26th May 2010, I was given a c-section because the baby was breech. The sound of her crying was just amazing, I couldn’t believe she was really here and I could hear her! She was rushed away to the special care unit and then later on to the children’s hospital. The diagnosis of Turner Syndrome was confirmed, and we were informed that she also had a cleft palate. However, three scans of her heart showed that while her heart was abnormally structured, the co-arctation of the aorta was no longer present and she did not require heart surgery! After nine days, she was discharged from hospital and we took her home. I can’t even describe how amazing it was to walk out of that hospital with my little girl, alive and well!
We have named her Rosanna Mae, Rosie for short.
At four months old, Rosie had to have heart surgery because the structure of her heart, which hadn’t been expected to cause problems, was affecting her breathing. She has right aortic arch with retro oesophageal continuation. While preparing for this surgery, the consultant discovered another heart problem, where some blood vessels from the lungs are pushing blood the wrong way, into the vessels returning from the brain (I think! I don’t know the name of the condition and information given about it has been a little sketchy). It was decided to go ahead with the planned surgery, and she will return for open heart surgery to correct the newly discovered problem in a few years.
This month (at eight months old) Rosie will be having her cleft palate repaired, which will hopefully improve her feeding ability which at present is very limited.
Rosie is a healthy happy little girl, who gives us great joy and happiness and we are so grateful to God that Rosie survived. She has developmental delays, and a few small problems such as impaired hearing and difficulty gaining weight, but it is nothing serious and we are very proud of her our precious little girl.
By: Laura Dawson
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