Our journey started at our 20 week ultrasound where we were told our daughter had CDH. We were absolutely devastated. We immediately did some research and learned all we could about CDH. We were trying to save money knowing that it would be tight financially traveling back and forth to Boston. We also knew my husband would have to take unpaid leave when she was born.
Unexpectedly I went into labor at 31 weeks. I was transported by ambulance from Maine to Boston where they were able to stop my labor. I was discharged but was unable to go home due to the high risk. My husband and I got a hotel room just out of town that ran about a thousand a week. As you can imagine this really ate into our savings.
We were told by a social worker about the Incredible Teddy Foundation. We discovered that they could help us financially with our housing. The Foundation generously made a grant towards our hotel expenses. I don’t know what we would have done without them; this gift alleviated the financial stress, helped us to focus on Oona’s diagnosis, and allowed me to concentrate on staying healthy.
I went into labor at 36 weeks. I had Oona Rose on July 17th. She had a difficult start, her future seemed bleak, but Oona fought through many challenges. She overcame 16 days on ECMO, a repair surgery, an infection which resulted in sepsis, a stroke, a fractured femur and spinal fracture, and an obstruction which resulted in another surgical procedure. She has an ileostomy and G-tube. She had clots which resulted in lovenox shots twice a day. Her incision from surgery split open which required a wound vac and packing. She has had two chest tubes, two belly drains with one pic line, and one central line under her clavicle that came out three times. She had to withdraw from major sedation and pain medication. I could go on and on.
It has not been an easy road and yet she has overcome so much. During all this the Incredible Teddy Foundation gave us a grant that we used to pay our mortgage and our oil bill. This was an amazing act of kindness. We can never thank them enough for relieving some of our financial burden. We are still recovering financially; without them it would have been much worse.
Oona Rose came home February 22nd after 189 days in the hospital. Her story inspires me and I am proud to say the Incredible Teddy Foundation was part of it.