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May 21, 2018 Latest post:
Jun 2, 2018
Our sweet little surprise, baby Maeve, was born about 6 weeks early on March 2. As some of you may already know, she was born with a set of congenital abnormalities called VACTERL association:
-Vertebral, she has an extra set of ribs which won’t affect her at all
-Anal & Cardiac, these two she thankfully does not have
-Tracheoesophageal fistula & Esophageal atresia, she had an abnormal opening between her trachea and esophagus & her esophagus stopped and was not attached to her lower esophagus/stomach. They repaired this during her first surgery.
-Renal, she has only one kidney which seemed fine initially.
-Limb, she has three thumbs. It’s adorable, trust me, but I’ll post a pic so you can see for yourselves. Plastic surgery will fix it eventually.
Her prematurity didn’t have anything to do with these issues but it did mean that at 4 pounds 6 ounces she was too small for surgery and she needed to have IV nutrition called TPN to help her grow bigger and stronger. We had a wonderful experience in the nicu at St Mary’s and she was very spoiled by all the amazing nurses there. Surgery was performed on the 29th of March. It was a success and we said goodbye to all of our nicu friends and went home on the 15th of April.
During her recovery in the nicu her only kidney went into acute failure, probably from some of the pain meds but no one could be sure. Since she left the hospital she has been under the care of a nephrologist who told us that her failure or “injury” is going to be chronic and will need to be watched very closely for the next few years. It needs to outgrow some of the issues or she will need a transplant but he seemed optimistic that this won’t be the case. So we have time to watch her and hope for the best.
At this point we thought we were getting to the end of her medical adventures for now but we were just beginning..