On October 9, 2012 my son-in-law, Bobby, was diagnosed with prostate cancer. Ironically that same afternoon he and my daughter, Tracy, discovered they were going to be parents for the first and almost certainly, the only time. To receive both pieces of news on the same day was surreal.
In January 2013, when Tracy was 4 months pregnant, they were told that their baby had Down's syndrome and would need heart surgery within months of birth as well as surgery on her intestine.
On March 29,2013 Bobby was hospitalized with chest pain and shortness of breath. He was told he would need open heart surgery...his second in 4 years. A little over a week after his surgery, during a routine doctor's visit, Tracy was hospitalized for observation. Two days later, on April 13, after Tracy was diagnosed with preeclampsia doctors performed a C-section delivering Lizzie 2 months early.
Little Lizze weighed in at 2lbs 4ozs and was 14 inches long. After her birth doctors discovered an additional, more serious, heart defect. The team of doctors conferred, weighing all the options, and decided the intestinal surgery was needed first in order for her to be fed. This repair necessitated a tube being inserted into her abdomen by which she is fed and meds are administered. She was not given great odds for survival because of her prematurity/size and the length of time she would need to be anesthetized, but miraculously she came through it.
Since that time she has had 3 open heart surgeries, liver biopsy, 2 bone marrow biopsies, and a tracheotomy. After 311 days in the hospital she finally came home on February 18, 2014. Three weeks later she was again hospitalized with seizures caused by bleeding in her brain from the blood thinners she had been put on. She was hospitalized for 2 weeks and put on anti-seizure medications while they monitored her. While she has overcome so much and beat the odds on several occasions she still has a long way to go. She is currently 15lbs and 23 inches long at almost 1 year of age.
Tracy and Bobby moved in with my husband and me after Lizzie's premature birth to be closer to the hospital. For several months Tracy continued to work but being over an hour away from the hospital and with so many surgeries and procedures Tracy was emotionally torn. Giving it a great deal of thought they decided that Lizzie was more important so Tracy quit her job. This cut their income in half, which then resulted in their losing their home. But being at the hosptial afforded Tracy the chance to learn firsthand from Lizzie's incredible nurses how to care for her many health issues, which proved invaluable for when she came home. To that point Lizzie's doctors were amazed by Tracy and Bobby's level of of medical knowledge regarding Lizzie's care. Apparently parents in similar situations have not fared as well.
Tracy, Bobby, and Lizzie all share the same bedroom with all of Lizzie's life support equipment. Lizzie's home ventilator(which pumps oxygen into her under developed lungs) and her pulse/ox machine(which measures her heart rate and oxygen level) have alarms that go off frequently, resulting in Tracy and Bobby getting less than 2 hours of uninterrupted sleep at a stretch. Also, there are 14 to 16 different meds that Lizzie requires every day which are given every 4 hours.
We have been asked by many, many people (family, friends, and friends of friends) how they can help Lizzie, Tracy, and Bobby. I felt this website would be the easiest way for anyone interested, near or far, to help defray some of the costs of Lizzie's care and their mounting debt.
Short term I'm hoping any donations will help ease some of their financial burden...long term they need a larger vehicle in order to transport Lizzie to her many doctor's visits. It is quite a process that currently requires 3 people to manage all the medical equipment needed for her care (oxygen, ventilator, spare ventilator, backup battery, suction machine, pulse/ox machine, trach care kit, stroller and much more). It would literally be impossible to fit all of this along with Lizzie, Tracy, and Bobby in their current vehicle.
Any donations received will be used in the manner described above...exclusively.
Thank you for taking the time to read some of their story.
DonationsSee top donations
- Stacey marlin
- Darcy Scheerhoorn
- Richard Hallberg
- Amy Smart
- Girl Scout Troop 1403
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