Natalie's Story - Battling SDS

Our sweet Natalie Elise has spent most of her life in the hospital due to complications from Shwachman-Diamond Syndrome. It's been an incredibly long journey full of both miracles and heartaches!

...A Timeline of Our Journey...
July 18, 2014: Natalie is born and admitted to Akron General Special Care Nursery.
August 15, 2014: She needs a blood transfusion and must be transferred to Akron Children's.
September 17, 2014: She has surgery to place a g-tube, a more permanent feeding tube.
September 2014: Natalie now requires 1/8 L of oxygen 24/7.
September 29, 2014: NICU discharge!!!
October 7, 2014: Oxygen needs are increased and we stay overnight at ACH.
October 13, 2104: At a pediatrician well visit, we discover her oxygen levels are not good. As she struggles more, we're sent by ambulance to ACH.
October 13-20, 2014: We're admitted to ACH. Things look very concerning. We first discuss the possibility of needing rib expansion surgery and/or a tracheostomy.
October 20, 2014: We transfer to Nationwide Children's Hospital in Columbus, where there's a center for thoracic insufficiency.
October 23, 2014: Natalie looks stable and well and we're discharged.
December 6, 2014: A consult to GI leads to the discovery of pancreatic insufficiency.
December 23, 2014: Natalie is admitted to ACH for the night with bronchiolitis.
December 25, 2014: We wake up and call an ambulance due to Natalie's respiratory distress. She's admitted to the PICU and intubated almost right away.
December 26, 2014: Natalie arrests and is given CPR.
December 27, 2014: She worsens very quickly. She now has pneumonia and very unstable vitals. Her blood counts come back at almost zero. She's placed on an oscillator and we discuss a possible need for a transfer if Natalie needs ECMO. We also are asked to think about our preferences in case she starts to pass. The attending tells us he suspects Shwachman-Diamond Syndrome.
January 9, 2015: She's transitioned back to the regular ventilator but we're unable to wean settings. A chest CT shows some necrotic lung.  We realize that a trach is most likely necessary.
January 26, 2015: Natalie has surgery for a trach, med port, and has her first bone marrow biopsy. Genetic testing comes back positive for SDS.
February 13, 2015: Natalie's paralyzed and sedated for a week due to a trach infection and lung inflammation.
March 2, 2015; She arrests during a trach change and is given CPR.
March 4, 2015: Surgery for g-tube removal, because it won't stop leaking.
April 1, 2015: Natalie spikes a high fever and her behavior is very off. She gets a head CT and a spinal tap, but nothing is found.
May 4, 2015: Due to a trach infection, she must be paralyzed and sedated for 6 days.
May 10, 2015: Natalie is finally 5 kg (the state minimum for home vents)!
May 20, 2015: More struggles with lung inflammation, steroids are given again.
June 25, 2015: Natalie spikes a fever and develops a positive blood culture from her port.
July 6, 2015: We transfer to Children's Hospital of Philadelphia for VEPTR surgery.
July 21, 2015: Another positive blood culture from her port. It's removed in surgery the next day.
July 30, 2015: The first  of many, many VEPTR surgeries with Dr. Campbell at CHOP
August 1, 2015: Natalie codes due to trach malfunction.
August 6, 2015: Finally on the home vent!
August 13, 2015: Transfer back to ACH
August 20, 2015: Surgery for GJ tube
September 9, 2015: After 257 days in the PICU, Natalie comes HOME!!!!

We don't know what will be written in the next chapter of Natalie's story, but we know that God has big plans and great purpose for her life. Natalie's journey has caused us to appreciate every single day and every memory we make with her. She has inspired us to look at others, especially those who are "different," with more empathy, while at the same time giving us the courage to stop caring what the world sees as perfect and normal. She is a beautiful baby with a beautiful spirit and we are so proud to be her parents.

Your donation of any size will help contribute to Natalie's mounting medical bills and great amount of medical supplies, help our family manage lengthy hospital stays and regular travels to CHOP, and help our family adjust to one income.  Thank you for your support, from the bottom of our hearts!

With Love,
Kyle and Lauren

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Learn more about Shwachman-Diamond Syndrome

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Organizer

Lauren Livengood 
Organizer
Stow, OH
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