Elizabeth Jackson Elizabeth's Heart Journey

First post: Sep 26, 2017 Latest post: Oct 14, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. We have been amazed by the love, comfort and support our friends and family have given us. We are grateful beyond words for this and did not know we needed it so much. While we knew that the road we are traveling would be challenging, we now know how much easier it is surrounded by people who love us and especially love our sweet daughter, Elizabeth. Below is a timeline of sorts describing Elizabeth's congenital heart disease and what happened until her first surgery.  Throughout her journey, Darren or I will be posting updates.  This site will also be used as a journal for Elizabeth which we'll give to her as a keepsake of her heart journey.  Please forgive my poor writing skills and thank you for visiting. - Leslie

On Tuesday, September 5, 2017, Elizabeth Marie Jackson was born at 10:33 A.M. at Vanderbilt University Medical Center via scheduled c-section surgery.   She weighed 8 lbs 2 oz and measured 19 inches long.   The procedure went as expected and we were fine.  After a quick hello and touch on the cheek, Elizabeth was taken to the NICU at Vanderbilt Children's Hospital for evaluation of a heart defect.  Darren went with Elizabeth and I continued recovery.

Elizabeth's heart story begins at 20 weeks in utero where the sonographer noticed several abnormalities.  For the second half of pregnancy, Elizabeth and I were evaluated weekly.   Because of the blessing of knowing prior to delivery, a team consisting of neonatologist, cardiologist, maternal fetal medicine specialist and pediatrician were waiting and prepared for Elizabeth when she was born. 

Immediately after birth, an echocardiogram was done.  This test confirmed Elizabeth's congenital heart disease to be Tetralogy of Fallot (TOF) with Major Aortopulmonary Collateral Arteries (MAPCAs).   Please visit this site for more info https://www.nhlbi.nih.gov/health/health-topics/topics/tof (https://www.nhlbi.nih.gov/health/health-topics/topics/tof.)   This movie also provides some information about the condition and the development of the first surgery.  http://www.imdb.com/title/tt0386792/plotsummary

On Thursday, September 7, a CT scan was done. This test showed that there was blood flow through the pulmonary arteries but very little. The scan also showed a coronary fistula. 

On Monday, September 11, a cardiac catheterization was performed.  We had hoped that the pulmonary valve could have been widened via a balloon from the cath and thus avoid surgery this early in Elizabeth's life.  This was not possible due to the small size of the valve and the muscle nearby it.   The cath also showed several collateral vessels coming from her neck, lungs and gut which made her condition much more complex than previously thought.

On Wednesday, September 12, Elizabeth was baptized by Father Mark Beckman.  It was a beautiful ceremony with just a few attending.  Tracy Warhoover became Elizabeth's godmother.  

On Wednesday, September 13, the cardiac surgeon reviewed Elizabeth's case and decided surgery was the best action.  A shunt would be placed in order to help the pulmonary arteries grow and cause the collaterals to disappear. 

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