About this fundraiser:

Sept 2021:
Luella had her 2nd Pulminary Banding on Sept 20th, 2021. She did amazingly well this time. Her heart was so much stronger and accepted the challenge of its tightening with much more grace than the first procedure. She recovered within just a few days. We are so very grateful for our blessings and having our little healthy girl back home so quickly. We pray that in just 6-9 months, we can go back for her last procedure for her Double Switch surgery. We will update you all as the time nears.
Thanks for all your prayers and support!
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November 2020 -
Luellas Story:
Luella Jean, our sweet little baby girl, was born with a very rare and complex heart condition, Congenitally Corrected Transposition of the Great Arteries (CCTGA).

CCTGA, is a rare heart defect in which the two lower ventricles and their attached valves are reversed. The great arteries are also reversed – which is why the “plumbing” of her heart works and she’s been able to survive thus far without prior interventions.

The weaker ventricle which would normally pump blood to your lungs, is pumping to her body. Therefore, that ventricle is getting tired and weaker. There is also the body’s weakest valve—the tricuspid valve—serving as your mitral valve, which is overcompensating, and is now moderately leaking.

It was discovered in utero at her 20-week scan, and we were faced with a very hard reality that she would enter this world with a broken heart. We were transferred to the Mother Baby Center for the remaining of my pregnancy, and her ‘birth team’ had guessed that she would be a NICU baby in the ICU until she was deemed healthy enough to go home. Boy was everyone wrong - Luella had other plans! She came out crying loudly, colorfully pink skin, kicking, screaming, and thriving with perfect oxygen levels – the NICU team was stunned. She passed all her tests, and her heart was pumping wonderfully.

Since she was born in January 2018 – we have been monitoring her heart at Minneapolis Children’s Heart Clinic every 3-6 months, and she has been on medications for the last year to help keep her heart stronger. But, with each passing Echocardiogram, her heart is showing signs of failure.

It is time to be proactive and proceed with her only option for correction which is called the Double Switch Surgery. This is a complicated and scary procedure, that only a few surgeons have enough experience with.

Luella will undergo 2-4 open heart surgeries in the next few years to prepare her heart for this major operation, which we started in November 2020. She is in great hands as we’ve chosen Dr. Frank Hanley of Stanford University, Lucille Packard Children’s Hospital, in California.

Dr. Hanley has developed a CCTGA Program over the last 15 years and is very highly regarded and respected for his Double Switch surgery experience. This surgery does not guarantee a lifetime of a healthy heart. Since the Double Switch surgery is so rare, there is very little data or long-term statistics to reassure us that she will be ok. Luella may need a heart transplant yet in her lifetime.

Every day we pray, and we are so very thankful that we are the parents of this beautiful, curly haired, spunky little girl. She’s a lover, hugs and snuggles are her favorite, she loves to dance and sing, she ADORES her big brother Logan, she aims to please, and melts everyone’s hearts with her precious smile.

God chose our family, to care for her, and we remain optimistic that she will live a full, healthy and happy life! She proved to be a warrior during her birth, and she will continue to be a fierce fighter through her CHD journey!

Zachary, Emily, Logan and Luella Pieper

https://www.caringbridge.org/visit/luellapieper

Your donations will help pay for:

• CCGTA Medical Costs
• Travel Expenses
• Supplement lost income to care for Luella