Ivy Huning - Celebration of Life and Remembrance

To read Ivy's entire journey please visit her CaringBridge site:

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


On May 3rd, 2021, our lives were forever changed, following the passing of our daughter Ivy Krystle Huning. It brings us much sadness to announce that Ivy's journey has come to an end. Although Ivy is no longer with us here in the physical realm, she will live on forever within the hearts of so many. For seven months, Ivy blessed us with happiness and joy, showing us nothing but love, and receiving that same love from beginning to end. 

We have decided to update our fundraiser, in order to help with the costs of funeral and cemetery arrangements.

To those of you that have donated to us since the start of this fundraiser, thank you. Thank you for your generosity, which allowed for the weight of financial burden to be lifted during an already stressful and difficult time. Your contributions enabled us to focus on Ivy and provide her with the love and care that she so much deserved during her seven months of life. We have held true to our word, using this fundraiser as a means to pay for medical expenses and all associated costs of 5 months in and out of the hospital not covered by insurance. Ivy was able to come home for two months, where she was able to be a "normal" baby, and part of a whole family outside of a hospital room.

Most of all, your contributions gave us the ability to pay for second opinion inquires. These inquiries are not covered by insurance and come at a high price. BUT, because of the second opinion given to us by Texas Children's Hospital, Ivy was granted an additional two months of life. During these two months, Ivy was strong, healthy, pain-free, and filled with joy. Know that she was gifted this because of you. Know that we are forever grateful for this. Your donations were the reason we had the opportunity to spend extra time with our daughter. Thank you so much.


Obituary
Ivy Krystle Huning was born on October 8, 2020, at 9:57am, to parents Zack and Krystle Huning at St. Louis Children’s Hospital. She weighed 3 pounds, 15 ounces, and was 17 1/2 inches long.

Ivy’s family was blessed with seven absolutely wonderful months with Ivy, before her journey came to end on the evening of May 3, 2021. During her life, Ivy brought pure happiness and joy to every person she met. She was deeply loved by her family and caretakers, greeting every person with immediate smiles and talking. Ivy touched the lives of many and will never be forgotten.

“Ivvy/Ivy Girl” will forever remain loved and in the hearts of her parents, her sisters Aydrien and Amelia, her grandparents Matt and Kelly Huning, her grandmother Karen Garris, her aunts and uncles, cousins, friends, and all those who had the pleasure of meeting her.

Please join us in celebrating Ivy's life on the morning of Monday, May 10, 2021. Visitation will be held between 11:00 am - 1:00 pm, followed by the funeral service at 1:00 pm. The visitation and funeral service will be held at Pitman Funeral Home, 1545 Wentzville Pkwy, Wentzville, MO 63385.






*Original Story:

Help support our family while Ivy is treated for Congenital Heart Disease - Aortic Coarctation, Atrial Septal Defect, Pulmonary Vein Stenosis, and Pulmonary Veno-Occlusive Disease. As of this week's hospital stay, Ivy is also battling an infection called Enterococcus, on top of her existing CHD related conditions. We pray that she can recover from this in order to continue her fight against CHD.

Please visit Ivy's main CaringBridge site for details on her entire journey. We have been vigilant in posting as much detail within our updates/journal posts as possible. Most who see this are aware of the situation and Ivy's health. The point of the message below is to answer WHY we are asking for donations and EXPLAIN our situation.


Why we are starting this campaign and asking for financial donation:

1. Medical Bills.
Ivy's prescription medication alone has averaged a monthly out of pocket cost of $1000+. One of Ivy's most important prescriptions is a drug called "Bosentan". This drug costs $11,000 a month due to lack of FDA approval. Various foundations have helped lower that cost for us, but it still remains a financial burden. Ivy has essential been kept alive because of this drug. This doesn't even factor in the costs of oxygen supply tanks/compressor/tubing and medical supplies like her heart monitor equipment, bandaging, etc.

Ivy requires a home healthcare nurse, Occupational and Physical Therapists, and Respiratory Therapy on a weekly basis. Monthly, after insurance, this is costing us $500+ per month.

Numerous other insurance claims have been rejected for coverage in terms of provided services. One example would be second opinion gathering - which costs us thousands of additional dollars out-of-pocket. We continue to fight with insurance on gaining coverage for these rejections, but ultimately many claims will simply not be covered.

The financial burden this has placed on us is stressfully overwhelming.

2. Hospital Stays
Barnes has practically eliminated any funding to parents/guardians of patients for meals. The monthly expenses for eating while staying at the hospital adds up quickly.

The drive back and forth from Wentzville and St. Louis adds up our gas expenses greatly.

3. Employment - (THIS IS POSSIBLY THE MAIN REASON AFTER MEDICAL BILLS)
Krystle and I no doubt have good jobs that we are thankful for, but we have exhausted our savings accounts. Krystle is a contract worker...if she doesn't work, she doesn't get paid. She doesn't have the option of using PTO/Vacation/Sick Time/Etc. due to the nature of her employment contract. Krystle has been unable to work during this time for obvious reasons, on top of maternity leave when Ivy was born.

My (Zack) employment has helped us survive financially to this point, but only with the help of our savings, which has been drained. I have PTO/Vacation/Sick Time/Etc., but even this runs out eventually. There has been, and will be, many days/weeks where we cannot work. We would rather focus on Ivy.

Anyone who knows myself and Krystle, knows that we are proud people who hate asking for handouts, ESPECIALLY financial ones. Starting this campaign is very difficult for us, but we have been told by many that it would only benefit us in a time of actual need. Many have asked for ways to help, and this would truly be the best way right now.

4. Donating to the CICU
Krystle and I have already made it our point, despite the outcome of this situation, to volunteer portions of our time to helping children and families affected by CHD. We would love to see part of these donations go directly to a program such as Mended Little Hearts. We've seen how much even small donations help. Something like a remote control car can give days worth of entertainment to a child staying in the CICU. DVD's are a big one!! Parents here, including us, love having access to board games, they could always use more! Flashlights (good/decent ones, not cheap ones - ask any icu nurse - they use these to check lines and parts on life support machines). Monetary donations can help families pay for things like medical expenses (such as us), and travel expenses for out-of-town families receiving care. Donations help so so much.


We are extremely grateful for the support we've already received in every way. We don't care at all about the size or form that your contributions to us have been received, as every one of them have put a smile on our faces and helped us during this time. We truly strive to return this kindness to all who've been there for us during this time. From the bottom of our hearts - Thank you.