Tilly's Heart to Heart Fund
Mathilda Claire Mueller is five years old. She loves purple, all things sparkly, singing at church, exploring tidepools, Daniel Tiger, playing mermaid in the bath, and most of all her little sister Beatrix. Known to most as Tilly, she has lived valiantly with a complex medical diagnosis since birth.
Tilly was born with five undiagnosed critical congenital heart defects. Her cardiac diagnosis of Tetralogy of Fallot and Pulmonary Atresia is coupled with a chromosomal deletion 22Q11.2 (DiGeorge Syndrome), as well as serious issues with her immune system (Low IgG, which is transient), hypoparathyroid, speech delay, recurrent serious ear infections resulting in tube placements, and developmental delays. She (and we :) spent nearly all of her first eight months living in the Cardiac ICU with many, many complications, stemming from infections from her first cardiac surgery, immune complications, renal failure, heart failure and feeding issues.
Tilly is a FIGHTER. She never gives up, and we thank God for that everyday. We also never give up on her, because we need her. She brings to our lives so much joy and gratitude, we cannot imagine life without her.
On September 25th, 2015 Tilly was admitted to Children's Hospital Los Angeles for heart failure, pneumonia, and both of her ear tubes had also ruptured as a result of ear infections. She was in bad shape. Her team worked out a new med regimen to try to manage the heart failure and the infections, and she has thankfully responded well to the added support. We brought her back home on September 30th.
We hope we can keep her here at home for a few weeks to let her regain her strength and optimize her health overall. She is going to need it. Sometime in the next six weeks or so, we will be handing her off to her surgical team, yet again, for open heart surgery for a pulmonary valve placement. This surgery will likely be complex, even more complex than it normally is, because she is so complex. Her sternum was badly damaged by the infections she had as a baby and we are not fully sure the degree to which it will complicate this next open heart surgery.
We are praying for the best outcome, of course, with this next leg of her miracle filled journey, while trying to visualize and minimize any potential complications.
We are also planning. Planning for long days in ICU and stays away from home for our family so we can be with her every moment we can while she heals. We unfortunately WILL NOT qualify for Ronald McDonald House due to the fact that we live in LA County (even though the commute can be more than 1 1/2 hours sometimes depending on the time of day). We expect lodging to be an expense we cannot fulfill on our own when she is inpatient for the open heart surgery. We also anticipate a loss of wages for Nick, as he does not have an abundance of paid time off to begin with, as he uses his off time frequently to attend appointments for Tilly, just for maintenance visits, and the past week in CV Acute used up a little chunk of what he had accumulated.
So we are coming to all our loved ones who we know have prayed us through the darkest of days, and championed us in the most glorious of times. We are coming to you with humble hearts to ask first for continued and unceasing prayers, and second for any help you can give us to support our fund for all the expenses that we know are soon to come.
We are not new to this. We know just how an event like this can decimate a family's financial foothold. Loss of work hours, travel expenses to and from dr appointments and the hospital, medications that are not covered, copays, copays, and more copays. Lodging expenses to be near the hospital. Meals away from home during her stay for our family. After care and therapy appointments for Tilly WHEN she finally comes home after the open heart surgery.
In her first year of life we sacrificed our financial foothold because things are just that... things. We lost our house, a car, one of our jobs, all savings we had were depleted. It was worth it and we would do it all over again for her because she is worth it. Nowadays life is different for us though. We don't have the same resources we had then to pull from. We have also grown as a family, thankfully, so we have Bea to provide for as well through this. So we are here. And I am having this heart to heart talk with you all because we know we will need help to weather the coming storm. It has never been easy for us to ask for help, but we know we cannot do this alone. We know the Lord has blessed us abundantly with a beautiful support system of prayerful hearts and we are forever grateful for every one of you.
We thank you for your prayers as always, as they carry us. We also thank you with all our hearts for always loving our little family.
Nick, Lisa, Tilly and Bea
