We've talked to several people who have told us they've missed the daily updates of Brady. We'll try to continue writing journal entries at least once a week or whenever any major changes or milestones occur.
The last week has been a blur, but we've also been able to settle into a sense of normalcy for our family. I went back to teaching, coaching track full time, and started a new quarter teaching online college classes. It's so nice to have the entire family in one location at night when the days are busy.
Ava went to school this week and has settled into her new role as big sister and helper. It's hard to keep her hands off of him. She loves to rub his head, give him kisses and hold him.
Ali saw Dr. Meshcke on Wednesday. The doctor said her wound is looking very good and gave her clearance to start exercising again. The nurses and doctors were all excited to see Ali, Casey and Brady.
Casey has settled back into his role as a momma's boy. He's surprisingly gentle and sweet around Brady. He asks to give him kisses and always comes to check whenever he's crying. He was excited to show off Brady to his classmates at ECFE on Thursday.
Brady saw his pediatrician on Wednesday. Dr. Tim said he was receiving updates about Brady since his birth and was excited to finally meet him. He was very impressed with his progress so far and didn't make any changes to his current treatment. He wants to see him again in two weeks.
I've been teaching for 15 years and I never knew that the local school district provides services for babies like Brady. Two people are coming to our house on Tuesday to do an evaluation of Brady and then develop a treatment plan they will do with Brady (and teach Ali) at our house.
A home care nurse will also be coming on Tuesday. They are providing all of our feeding equipment. We think they'll check on Brady, make sure we have enough supplies, and also ensure we're feeling good about everything.
Ali has been playing phone tag with the people at Gillette Children's Hospital. We will eventually have a doctor appointment with them to evaluate Brady and provide occupational therapy as needed.
Brady will also be returning to the U of M a couple of times in the next couple of weeks. The surgeon wants to check the progress of his G-J tube. They also want to do a follow up swallow study.
The biggest news over the past week is the Brady has really been eating well. The plan is to have him take 760 ml each day. We're supposed to feed him through his G-J tube 480 ml at night (12 hours of 40 ml) and then bottle feed him the rest during the day (280 ml).
Yesterday Brady took 540 ml by bottle and we were able to disconnect him from his feeding equipment four hours early. We're going to do the same tonight. In the hospital Brady was stuck around 40% of his consumption by bottle. The past couple of days he's been around 60-70% by bottle.
He's also had a couple of individual feedings over 110 ml, which was the goal amount we could never reach in the hospital. Ali and I are being careful not to push the feedings too much. We still want it to be enjoyable for Brady.
There still are some signs of reflux at times, but he's much more relaxed and comfortable when he eats. It seems like the reflux medicine is helping, and the thicker milk also is preventing aspiration. He does sometimes throw his food back up, but that seems to be improving as well.
Ali is still getting up every 3-4 hours to pump. We also need to wake up every four hours to refill the milk on Brady's pump. Brady has been sleeping very well. He usually falls asleep around 9:00 p.m. and will sleep until 4 or 5 in the morning. I usually feed him a bottle at that time and he'll fall back asleep until 9:00 a.m.
He has been very alert for large stretches during the day. He really enjoys looking at faces and is showing a lot of signs of normal behavior. He is moving his eyes and head to follow sounds and faces. His neck muscles are extremely strong and he really enjoys tummy time. He's starting to coo and make faces to communicate. He's also beginning to bring his hands to his face and grasp objects. All of those "normal" behaviors are wonderful to see, and we'll learn more about his development as we meet with occupational therapists in the next few weeks.
It's quite the ordeal to get Brady ready for bed. We need to clean his G-J wound, change his diaper and dress him, put splints on his hands, give him medicine through the J-tube, warm milk and fill up his feeding bag, prime the tubing, warm his bottle milk and add thickener, program his feeding pump, feed him his bottle (sit him up, tilt him down, burp, lift the chin, squeeze the cheeks, repeat), strap him into his Danny sling, etc. It's a process that takes Ali and me more than one half hour working together (and then we still have the other two other kids to put down).
At one point tonight Brady was on the changing table and crying. Ali was getting medicine ready, and I was mixing Brady's bottle. Ava was holding down the button to prime the feeding pump tubing. I looked over and Casey climbed up on the changing table and placed a pacifier into Brady's mouth to calm him down. It was such a cool moment to see the whole family working together for our newest addition.
We're so blessed to have Brady home, and we hope he continues to improve. We can't thank you enough for all of the messages and prayers.
With love,
Tyler, Ali, Ava, Casey and Brady
No comments:
Post a Comment