In September 2015 Kaylie and Jesse received the news that they were finally going to become parents and they couldn't be happier, this was a day they had been praying for. The first few months were full of excitement and planning for their new arrival, Ava Grace, in May 2016.
At their 20 week ultrasound some abnormalities were noted including a 2 vessel cord and a baby that was much smaller than she should have been at this time. Follow up a week later confirmed that their little girl was only in the 3rd percentile for growth and weight and was diagnosed with symmetrical Intrauterine Growth Restriction (IUGR). IUGR is a condition that prevents a growing fetus from getting the oxygen and nutrients needed to grow properly. After birth the newborns growth and development will depend on the severity and cause of the IUGR. IUGR babies are monitored for growth, development, and blood flow through the umbilical cord frequently throughout pregnancy to determine if they are doing well enough to remain in utero or if they need to be delivered early.
At 29 weeks during another of their growth scans they were told that another abnormality had been noted over the last few weeks of ultrasounds. No stomach bubble had been seen on ultrasound throughout their frequent monitoring. Ava's ultrasounds had been viewed by and discussed with doctors down at Children's hospital in Minneapolis during their monthly conference and they were all in agreement that Ava also has an Esophageal atresia (EA) with possible tracheoesophageal fistula (TEF). This means that her esophagus and stomach do not connect as they are supposed to and there is potentially another connection attaching her esophagus or trachea in a way they are not meant to. There are several different types and severities, all of which require surgical intervention after birth.
The doctors had Kaylie relocate to the cities at 35 weeks gestation to be monitored as closely as possible. She will be out of work while Ava is in the cities and does not qualify for disability to cover this time or qualify for FMLA. They will need to pay monthly to continue their insurance through a cobra plan while Kaylie is out of work. Jesse will have to remain in Cloquet to continue working to pay their monthly bills and will be driving to the cities on the weekends.
Ava was born May 14th at 3lbs 10oz (in the 1st percentile) and went through her first surgery two days later where she had her TEF (a connection from her trachea to her stomach) repaired and a G-tube placed so she could receive nutrition. They were unable to repair her EA at this time as she has a long gap and her esophagus will need to stretch before the repair can be done.
We also learned after birth that Ava has several heart defects that required her to have open heart surgery. At 25 days old Ava had her second major surgery to repair an Arteropulmonary window, aortic hypotrophy and an atrial septal defect.
At 26 days old Ava went back to surgery to close her chest back up.
Her third major surgery will take place in mid August and that will be to hopefully repair her EA. She needs to remain in the hospital until this time to remain on suction so she does not choke on her own secretions. If at the time of surgery the gap is still to long to fix she will be paralyzed and sutures will be placed at each end of her esophagus. Those sutures will come out through her back and slowly tightened each day while Ava is facedown and paralyzed until the two ends of her esophagus meet up and she can have another surgery to attach them.
At this time it is impossible to tell how long she will need to remain in the hospital down in the cities. What we do know is that they are very lucky to live only 2 hours away from such an amazing hospital where Ava will be able to have the surgeries she needs to survive and live a normal life.
Ava has a Go Fund Me account set up to help the family with medical costs and the cost of relocating to the cities for Ava's care. Please be aware that financial tributes made on this site do not go to support Ava. http://www.gofundme.com/avagracew