Last night the nurses backed off even more. We pretty much took care of everything on our own. We administered all of the medications. We set up the pump and fed Brady. We even modified the feeding amounts as the night progressed.
They want Brady to take 760 ml over the course of the day. We can give him 480 ml of that during the night through the J-tube (40 ml per hours for 12 hours). That leaves us with 280 ml we need to try to bottle feed him during the day. If he won't take that much, we can always bolus the amount through his G-tube. It's really a low-stress environment for feeding.
Brady took his full amount during the day. He also woke up a few times during the night and cried. We fed him a bottle during those times. We then started reducing the amounts he needed over the night (from 40 to 36 to 32 ml per hour). After Brady's last bottle feed during the night, we were able to disconnect him from the feeding machine completely one hour before we had planned.
We think this is how it will work while Brady is home. We'll continue to try to feed him as much as we can. If that volume increases, we'll be able to reduce the assistance in the evenings. Obviously the goal is to get him to 100% bottle feeding in the future.
We were in our room today when the doctors made their rounds. We ended up having the same neonatologist today who was at Fairview Ridges the night Brady was born. I still remember vividly having a conversation with him about an hour after Brady's birth and asking him if Brady was going to live.
Today, the doctor said he is amazed at Brady's progress. He said Brady has far exceeded his expectations of him at this point.
We still don't know what the future holds for Brady. We really won't know for several years as we wait for developmental milestones.
We will meet with our pediatrician next week and they will take over the care of Brady. Because of Brady's birth history, our school district will send someone to our home to do preventative occupational therapy. We will also be referred to Gillette Children's Hospital. We have learned that they are the best place around for working with children with brain injuries like Brady.
We were officially discharged from the hospital at 11:00 a.m. Ava and Casey were so excited to see their little brother. Casey ran cars and trucks all over his body. Ava just wanted to hold him and stroke his skin. Brady couldn't take his eyes off of both of them.
It was hard today to say goodbye to the doctors, nurses and therapists. We were so blessed to have such talented people care for our son.
We can't say enough about how much we appreciate what our parents have done for us over the past 39 days. They have basically dropped everything to become full-time parents again. Ava and Casey have treasured their time with the grandparents, and Ali and I are so thankful of the time we were able to spend at the hospital.
We also want to thank all of our family and friends for their continuous support and love. We truly have felt uplifted by all of the message and prayers. We know that Brady was surrounded by constant prayer. It continues to make him stronger every day.
It felt a little strange to pile three kids in the back of our vehicle. We went to the 4:00 Easter service at Hosanna! and then out to eat with family. We feel so blessed to have Brady home for Easter. It's going to be a fantastic weekend.
The last song at the service today was called "Beautiful Things". I was holding Brady in my arms and the music was perfect. Brady has been through so much pain, he is being made new, and it's a beautiful thing. Happy Easter!
With love,
Tyler, Ali, Ava, Casey and Brady
No comments:
Post a Comment