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4/8/2016 Latest post:
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
So our Avery is little. She always has been little. At 4 years old, she only weighed 27 lbs. Avery has always had trouble with sleeping and eating, since birth. Her Well Child visits came and went. We started to realize there was not a lot of weight gain…ever. We started supplementing her diet at age 1. After Avery’s 4 year Well Child check in September we continued to grow more concerned about her weight. We scheduled an appointment at the Feeding Clinic at Children’s Hospital in St. Paul. We waited for months to be seen on December 31, 2015. The appointment was super tough but we established a care plan with weekly OT feeding therapy as well as psychology appointments every other week to help Avery establish a better relationship with eating. Avery is super shy and really connected withour OT Therapist, Rhonda and Psychologist, Dr. Amble. We were so lucky she had an instant relationship with them both. These appointments were established to help with the mental part of feeding. We were also referred to the Children’s Sleep Clinic, GI Specialist and an ENT Specialist to see if there was physical reason why Avery wasn’t eating. We first saw the BEST ENT specialist ever, Dr. Malone, and it was discovered that Avery had extremely large tonsils...4+ also referred to as kissing tonsils. We were so excited (who says that right?) but we had a reason for the feeding issues or we thought we did. Avery’s tonsils were so large, Dr. Malone stated that they impacted her eating habits and when she ate it was like eating with the worst cold. We couldn’t believe it, we thought we had our answer. On February 17, 2016 Avery had her tonsils and adenoids removed at Children’s Hospital in St. Paul and it went well. Well enough that we went home that very same day, even though we had planned to stay overnight. Avery ate 2 popsicles after surgery and we couldn’t believe it, we thought we really had just fixed everything! Let’s just say Avery never eats popsicles! Sadly, things changed about 6 hours after surgery, she came down with a fever of 103 and a horrible cough arrived (she must have come down with an illness just prior to surgery )followed by constant vomiting. We visited the ER twice and on February 22nd, we were admitted to Children’s Hospital for severe dehydration. The ER doctor also ordered a chest X-ray for her cough. The chest x-ray came back with no pneumonia which was awesome but they found what they called an incidental. They realized on the x-ray that it appeared Avery’s heart routed the opposite way of a normal person. We stayed in the hospital for a couple of days for fluids and headed home. We then met with cardiologist Dr. Sivanandam at the U of M on February 29th, 2016. They did an ultrasound and she ordered a CT scan. Avery was so brave that she did not need sedation for the CT scan on March 4th, 2016. The nurses even cheered for her. The cardiac CT confirmed that Avery has a complete vascular ring from right-sided aortic arch with aberrant left subclavian artery with a diverticulum of Kommerell (left sided ligamentum arterisum). Yeah we didn’t understand it either. In other words, Avery has a ligament that is completely wrapped around her trachea and esophagus. To be more clear: A vascular ring is a congenital defect in which there is an abnormal formation of the aorta and/orits surrounding blood vessels. The trachea and esophagus are completely encircled and sometimes compressed by a "ring" formed by these vessels, which can lead to breathing and digestive difficulties. The ring is so tight that Dr. Sivanandam indicated that Avery can not even swallow something the size of a pea. We finally figured out why she isn’t eating…. she physically can’t. On April 21st, 2016 Avery had surgery at the U of M Masonic Children’s Hospital to remove the vascular ring. She did amazing and we got home in 5 days from surgery! Please know, this is a long story we tried to condense. The story continues and please be sure to check out journal updates. We have left out a lot and choose not to focus on the past but only focus on the future. We will update this site as often as we can and hopefully type lots of positive news to share with everyone! Thanks for taking the time to read this and caring about Avery. If you leave a message on the site please know we will read each and every one to her! We can’t wait for her to feel better, be able to eat, grow and show the world what is up! She is one tough little girl.