Talking Discharge

We had a Care Conference today with Joanna's doctors and nurses to discuss what will need to happen between now and discharge and beyond. She will continue to build her stamina in breast and bottle feeding and her lungs need to grow and mature more to wean her off of the oxygen. They said the next week or two will really tell them a lot about how she is progressing. She actually took a whole bottle for one of her feedings this morning which is awesome. Usually she will take around half and then the rest will be given through the feeding tube. They gave us a lot of information on follow up care for her after she is home. What I've learned is, preemies aren't just treated as preemies until they're due date. They require special care fore several months or even years after that.

It's going to be hard to not blog about Rebecca even when there isn't anything to say other than we miss her. Jessica and I went back to Children's Hospital to the CICU yesterday for the first time. It was a little odd for both of us. For Jessica it was hard to see another family in our room and them not even knowing that our daughter passed away in there just a week ago. For me it was difficult to walk past another room and see another little girl in an adult bed. Overall, we held up pretty well. We were there for a presentation of a donated piece of equipment in Rebecca's name. It was donated by a friend of our families' and his company ICUcare, LLC. This piece of technology will allow videoconferencing over the web so family members can "be there" when they can't actually be there. The staff was really excited to receive this gift and are eager to implement it into their daily use. The display cycles through a picture of Rebecca, a picture of us with Rebecca and a letter that I wrote for the unit that I will post below.

At 28 weeks gestational age my wife Jessica and I delivered twins
girls on March 28, 2010 at University Hospital. Rebecca was diagnosed
in utero with a congenital heart defect so was transferred to
Children's Hospital after birth. Her sister Joanna remained at
University Hospital NICU where she continues to grow. As Rebecca's
parents, Jessica and I rode the ICU roller coaster for 74 days at
Cincinnati Children's Hospital. The first 51 days were in the RCNIC
and the remaining 23 days were spent in the CICU. In that time, we got
to know many wonderful people as they cared for our daughter. Possibly
just as important, we got to know ourselves. What we learned was, no
matter what situation you find yourself in, trust in God and he will
provide you with the strength to carry out whatever plan He has for
you. His plan for us was to show Rebecca Sue love and comfort until
the time that he invited her to be with him June 10, 2010. In just a
few days we found ourselves, by circumstance, being brought closer to
some of the nurses and doctors here than we ever thought possible. As
a firefighter, I sometimes have a difficult job but nothing like what
was displayed in these units. The doctors and nurses here went beyond
themselves to help Rebecca. We were told for several days that only a
miracle of miracles would allow her to live. We held onto that miracle
every day until the end. While they continued their care for Rebecca,
they allowed us the time we needed to accept what was happening. The
dedication you all show to your job lets those watching know it's more
than just a job. Thank you for your compassion, honesty, perseverance
and tenderness. May God continue to use your hands to do his work.

Brandon & Jessica Barnard