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Savannah, born 2019 (HLHS:Heterotaxy).jp

Savannah, born 2019

In January 2019 we found out we were having a little girl. That same exciting appointment turned into a devastating appointment rather quickly. We were told our daughters heart only developed halfway and the entire left side was under developed. Along with that they informed us other organs weren’t exactly where they should be. At this time we were given the option to terminate or go to the children’s hospital of Philadelphia. That afternoon I called CHOP and they had us scheduled for the end of the week. 4 short months later she arrived (6 weeks early too) and that’s when her journey began. At just 2 weeks old she underwent her first open heart surgery, called the norwood. Her recovery was not at all what we expected and turned into 110 in the hospital and on ECMO twice. She needed CPR for 46 minutes and was essentially gone. Our amazing Drs saved her and she now relays on a pacemaker but we were finally able to bring her home in sept. December 18, 2019 we went back for our second open heart surgery. As of today 4/24/2020 we are still admitted. This recovery has brought respiratory distress and feeding intolerances. She has been battling oxygen and feeding. She now has a GJtube to eat. We also found out her intestines aren’t perfect and will be having a surgery to correct it. We’re hopeful once we get home this time we won’t have to go back for a long time.

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