The Journey of Hazel Grace Nelson - #HeartofHazel
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Raised $8,050
Goal $20,000
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“All we can do is give her the best life, be strong and positive, and pray the doctors are able to help her.”
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September 7, 2017

The Story

Minden, IA

Jackie and Brandon Nelson are loving parents of three children whom they absolutely adore. Jacob (6), Cooper (3), and Hazel (2 months) are the loves of their lives. Both Jackie and Brandon live an active lifestyle between full-time jobs, cattle and horse chores on the ranch, and three young, active children. The Nelson family is now facing many challenges with baby Hazel’s health and complications of her progressive disease.

On February 8th, Brandon and Jackie Nelson were set to have their 20 week ultrasound. Due to an ice and snow storm that cancelled school, Brandon surprised Jackie by bringing their sons Jacob and Cooper to the appointment. This moment was extremely heartwarming for the Nelson family as they were about to see their baby for the first time as a family. While the ultrasound technician was taking pictures, Jackie noticed that she kept focusing on the baby’s heart. Soon after, the ultrasound technician brought in a Maternal Fetal Medicine, or high risk, obstetrician who took a closer look at the baby’s heart. He told the family that he suspected a congenital heart defect in the baby. Up to this point, there were no indications of anything being wrong, so this news caused Jackie and Brandon to think how life might be moving forward praying for the best outcome possible for their unborn child not knowing the ensuing journey.

Hazel Grace Nelson entered the world on June 23, 2017. Jackie got to hold Hazel for only a minute or so before the Newborn Intensive Care Unit (NICU) at the University of Nebraska Medical center took her to stabilize her before she was transferred to Children’s Hospital for an immediate heart procedure called Arterial Septostomy.

On July 6, Hazel encountered further complications when she was also diagnosed with Pulmonary Arterial Hypertension. This diagnosis is seen in only .02% of babies with Hazel’s same condition. The chances of someone having Pulmonary Hypertension and TGA are equivalent to getting struck by lightning twice- very rare. Hazel was discharged and is currently on medication every six hours.

Since her discharge, Hazel has had to undergo another heart catheter procedure, as well as a bronchoscopy and CT scan. Unfortunately, at that time, the physicians delivered further bad news to Jackie and Brandon. They were told Hazel is not responding to her current therapy. Her lung pressures are three times their normal size, and doctors are going to aggressively treat Hazel. She is their youngest patient with this diagnosis. She is starting a second medication therapy and it is anticipated she will be placed on IV infusion therapy if she does not respond quickly to the second therapeutic approach.

The Nelson family hopes to raise $20,000 through RedBasket.org to assist with Hazel’s medical bills. Raising these funds would allow the Nelsons to be able to focus on Hazel and her healing journey without the worry of medical bills. While this journey has been difficult for Hazel and her family, they have been blessed with endless support from family, friends, folks who have heard Hazel’s story.

“I know God put her in our arms for a reason, and even though we don’t understand it, we are so proud to be her parents and her brothers are so in love with her. I pray she will outlive us and modern medicine will be on her side,” said Hazel’s mother, Jackie.

By making a tax-deductible donation to baby Hazel’s name, you can help her in her journey to fight this horrible progressive disease. Please consider donating today towards her battle of this disease and share her story today!

Updates (2) Updates (2)
Crushing - 10/19/2017 Update |

Hazel Update from Jackie Nelson (mom): Today we had an appointment with Childrens Cardiology just to double check her pressures with an echo, and make sure there wasn't more then just a cold going on, hoping we would be told the echo looks better because of the new drug Bosenten that she is on. As I drove in to Children's today, the 15 year anniversary of my brother's death, I looked up at the big tall glass hospital and couldn't help but feel so much emotion. I lost my brother in this hospital 15 years ago, and now, they are taking care of our sick baby girl. We are so lucky to have them out our back door and I'm thankful for them, but I don't think I'll ever have a warm fuzzy feeling coming here. Hazel had some more very unfortunate news. Her lung pressures are 150/50 and a normal babies are 25/10. She is in a very bad place and is being admitted to the pediatric intensive care unit. She be undergoing surgery tomorrow to have a central line placed to begin IV therapy, that will follow her for the rest of her life. She is also not growing like they want her to, but has gained some weight since her last appointment. Our hearts are crushed, but I guess we're use to getting them stomped on. Her cardiologist, Dr. Fletcher, is going to treat this disease called pulmonary hypertension aggressively. He has reached out to colleagues in Denver, Houston, and St. Louis and has mentioned lung transplantation. But with transplantation, you trade one illness for another. Survival rate in lung transplantation in the 1st 6 years is only 50%. It's not a cure. I've never felt some numb. Hazel will not be at her benefit this weekend, but she wants to thank everyone who is coming and has donated and made this all possible for her. We are so fortunate to have you all in our lives. With everything so hectic I have not been able to get written thank you's to everyone, and my list of people to thank keeps getting longer. I apologize for the not getting them sent out but know that our appreciation to you all is overflowing. Hazel's condition is rare, and it's a trail and error to try and help her. She will never recover from this, but we hope we can slow the progression and she can sustain a life with quality. I hope my brother is watching over her and can talk God into a miracle. Please pray for her. Love and thanks to all. #heartofhazel

Read More > < Read Less
A Note from Hazel's Mom - 08/29/2017 |

Hazel is out of surgery and our hearts are crushed.





She indeed has pulmonary arterial hypertension and the heart cath confirmed the





fears from her previous echos. Hazel's heart cath





showed the mean pressures in her lungs are 3 times what they should be. This





causes her right ventricle in her heart to work overtime, and the muscle to





continue to enlarge. She did not respond to increasing her dosage of





sildenafil, and showed almost no change when testing her with oxygen and nitric





oxide. The next step is to start a medication called bosentan, which helps to





decrease pulmonary resistance. This medication is very hard to get approved





from insurance companies due to it being very expensive. We hope to have it in





7 to 10 days but Dr. Fletcher, Hazel's cardiologist said it could take longer.





She will have to undergo testing of her liver monthly to monitor effects that





this drug can cause. If this does not work, the next step will be IV therapies.





Dr. Fletcher is a very straight forward doctor. He told us we are not at a good





point, so he wants to be very aggressive with her therapies. She also has





malacia of the trachea which is where one side of her trachea is not as open as





it should be. Because of this they want to do a sleep study to make sure she is





getting enough oxygen while sleeping. Babies with heart defects are 8 and





1,000, and of those babies, 1% have transposition of the great vessels, and of





those babies, .02% have pulmonary arterial hypertension. This is so rare and





and so few babies have it. They do not know the cause if this, but classify





this as World Health Organization, Group I, caused from her congenital heart





defect. 







We are starting from square one. We were to scared to ask her survival





rate. We know this is a very scary disease and if we cannot find a therapy that





works, it could be devastating. I don't want to think about devastation. All we





can do is give her the best life, be strong and positive, and pray the doctors





are able to help her. I want her life to be normal. I want her to be able to





walk, go to school, learn to drive, ride horses of course, go to prom, have a





boyfriend, go to college, get married, have kids, and most importantly, be





happy and have a quality of life like anyone else. We will give her so much





love. We have a very long road ahead, and I am scared how we will be able to





juggle work, 2 other kids, and all the doctor appointments she is going to





have. I know we will find a way. I want to thank everyone for their continued





thoughts and prayers. I know so many family and friends are following Hazel's





journey and hurting right along with us. Thank you for loving her and





supporting us.







I know God put her in our arms for a reason, and





even though we don't understand it, we are so proud to be her parents and her





brothers are so in love with her. I pray she will out lives us and modern





medicine will be on her side.

Read More > < Read Less

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