Well I can’t believe it’s been three weeks with Ellie! She is the most precious little nugget you ever did see.
On Monday, we went to Vanderbilt Children’s hospital to meet with the genetics specialists and learn more about what we can do to help our sweet Ellie girl. While there, we were encouraged to go ahead and admit her, so we could meet with multiple specialists in one stay. For two full days we met with what felt like 100 different doctors, nurses, and specialty experts.
After a chest x-ray, echocardiogram, swallow test, blood work, and being watched by multiple experts... it is believed Ellie has a combination of central apnea and a slight obstruction caused by the general “floppiness” of her airways. These issues are common for Trisomy 18 babies.
We also found that she had a tiny hole between her atria, and a slightly larger one between her ventricles. It is not believed that these are contributing to her current oxygen issues. However, the hole between ventricles may present issues later as she grows bigger. Only time will tell.
We’ve put Ellie on an NG tube to give her passive nutrition. It appeared that over the last few days, she had burned more calories than she had gained by bottles and nursing. Thankfully, the swallow tests confirmed she is capable of safely accepting bottles and nursing, so that is still something we can do for taste and comfort as we lean on the NG tube for primary calorie intake. We hope this will help satisfy her and get some meat on her bones soon.
She is a little miracle who surprises us every day. Thank you for your continued prayers for our family as we navigate this new and very different season. Thank you also for your support through our GoFundMe site, Mealtrain, and those who dropped off bags and boxes of preemie clothes and diapers at our door the last few weeks! The generosity of family, friends, neighbors, and even total strangers has been tremendous.
Big shout-out to the team at Vandy Children’s. They were very kind, attentive, and thoughtful of our whole family. Even Emma got presents from them! 🥰