Miracle Dan: 2nd cardiology visit

Monday, February 21, 2011

2nd cardiology visit

We had our 2nd echocardiogram on Friday the 18th. Good news, they told us he does not have Pulmonary Atresia! They were able to see his pulmonary artery. It is just really really small/skinny. They were also able to see 1 of the 4 pulmonary veins, and they think that there is a good chance of the other ones being there since there is one there. The AVSD is still there, and he will still require surgery when he is born. They are still pretty sure he has heterotaxy syndrome as well. We won't know if he has a spleen until he is born and is looked over by a gastrointestinal doctor. It is really hard to find any positive information on heterotaxy, theres just not a lot out there since it is so rare. :(

2 comments:

JamieFebruary 22, 2011 at 8:30 PM
Sounds like you got some good news and I'm sure there is more to come as time goes on! :D
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The INCREDIBLE Pettit'sMarch 5, 2011 at 10:02 PM
Lindsay- I am Brytten a fellow heart mom and president of IHH. I will try to follow your blog, but please contact me when he comes if I don't contact you, we would love to bring you a care bag to the hospital and meet you in person. Please feel free to friend me on facebook and also Intermountain Healing Hearts. Please let me know what I or the group can do for you.
Heart Hugs-Brytten Pettit
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Our Angel~Daniel Mark Jones

Daniel was born on April 14th, 2011. He returned home to his Father in Heaven on May 19th, 2011. We found out at our 20 week appt that Daniel had a special heart. When Dan was born we found out that his heart defects were a little more complex that expected. He was born with Heterotaxy, AVSD, Obstructed TAPVR, severe pulmonary stenosis, branch pulmonary stenosis, and an enlarged midline liver. We were planning on starting a series of 3 surgeries when he was born, but 2 hours after birth we learned he would no longer be a candidate for surgery. He was not expected to live more than 5 minutes off of the machines, but he hung on and made his Mommy and Daddy very proud for 5 amazing weeks. When Daniel was 2 weeks old, we attempted a catheterization procedure and balloon valvuloplasty to tried and balloon open a pulmonary artery to get him better oxygen flow but it was unsuccessful. He recovered quickly and we enjoyed his company for another 3 awesome weeks. This is an account of some of the amazing memories we have of our sweet Daniel. Mommy misses you honey, and I think about you every day!!!

Daniel's Obituary

"An angel in the book of life wrote down our baby's birth and whispered as she closed the book, 'Too Beautiful for Earth.’” - author unknown Our handsome, miracle, baby boy, Daniel Mark Jones returned home peacefully to the arms of his Father in Heaven on May 19, 2011. He was in the company of his loving parents, Tyler and Lindsay Jones, and close family as he closed his eyes and moved on to the next life. Dan was born April 14, 2011 with a special heart. His five minute life expectancy turned into five miraculous weeks. Dan blessed the lives of his family, friends and total strangers. His life story has touched so many and his memories will live on inside each of the hearts he touched. His strength, courage, and bravery will forever inspire us all as we travel through life's challenges. Dan loved being held and spent most of his life in the arms of loved ones. Dan spent many nights in the arms of his amazing, loving grandparents, Mark and Karen Jones and Pama and Daniel Wynn. He loved going on walks in his stroller, watching soccer with his dad, and spending long hours in his mommy's arms as she cuddled and kissed him. Dan was adored by his aunts and uncle, Daylan and Rilee Jones, Shirley Cussimanio (Susu), and Chelsie and Nash Montoya. Dan is now in the company of loving great grandparents, Lyle and Lorraine Wynn, Robert and Carol Tingen, and Charles "Toy" Atwood. He will be missed by remaining great grandparents, Jill Abrahams Jones, Gayle Atwood and William and Jackie Jones. Special thanks to U of U hospital, Primary Children's Medical Center, Rocky Mountain Hospice, Miles of Memories Photography, Lindquist’s Mortuary, and all who selflessly served, prayed, supported, and loved us. A celebration of Dan's life will be held Tuesday May 24, 2011 at 2 pm at Pheasant Run Ward Chapel (5080 S 3100 W, Roy, UT) All who wish to bid Dan farewell can do so Monday from 6 to 8 pm at Roy Lindquist’s Mortuary (3333 W 5600 S, Roy, UT) Donations can be made to the Miracle Dan Fund at America First Credit Union (Account#9046764) We love you Miracle Dan, and we will think about and miss you everyday until we once again hold you in our arms. - Love Mommy and Daddy