The first three weeks of Harper’s life were in the NICU. She had her TE fistula repaired at 4 days old and had an NG tube placed. Harper was able to go home on March 9th. She went home with an NG tube, oxygen (1/4 of a liter), pulse ox and a feeding pump. We had a checkup appointment on March 21st which ended with us being admitted to the hospital. Long story short, the doctor noticed Harper was having a hard time breathing. After x-rays, ultrasounds and a bunch of tests, the holes in her heart were allowing too much fluid to enter into her lungs. The cardiologists put her on medicine to reduce the amount of fluid flowing in her heart and she improved within 24 hours. They sent us home on March 29th.
Harper turned two months old on April 15th!
Harper had her g tube placed on April 12th and we were sent home two days later. She no longer needs to be on oxygen but we do have a tank with us at all times just be safe. We still use the feeding pump as well as the pulse ox to monitor her oxygen saturation. Harper weighs a little over 7lbs and gets about 2oz of formula every 4 hours. She is still taking medicine for her heart as well as medicine to reduce reflux.
Harper is currently the oldest baby with Trisomy 18 to be seen at her hospital. Her doctors enjoy seeing her (as long as it is on good terms 🙂 ) and they are very optimistic about her health!