hope for brooke: catching up...finally

So, it turns out that home life with three munchkins, including one with some very special needs, is a little crazy...and a lot exhausting. Whew! :) But I wouldn't trade it for anything!

Here's a little catch-up...

11/25/13 - As you probably read, we were discharged that day. We actually ended up spending the night at our temporary St. Louis apartment because we left the hospital so late in the afternoon. We had both vehicles packed and ready to head home home on Tuesday. That honestly seems like an eternity ago. We were thrilled to be home for Thanksgiving and enjoyed a very quiet, low-key week at home together.

11/30/13 - After the quiet start to being home, Brooke ended up being readmitted on the following Saturday evening for gradual weight loss and increased emesis (fancy for "vomiting"). That Friday night she was really irritable with every feed. Then John woke up Saturday morning with the stomach flu. Yuck! We thought Brooke might have a touch of that, so I called our nurse practitioner who works closely with our cardiologist. She requested that I go ahead and bring Brooke to St. Louis to be readmitted and watched for a few days. So, with John in bed with the flu and John's dad as my chauffer, off I went with Brooke while his mom stayed here to care for the girls. Thankful for them! By the time we left our house for St. Louis, I wasn't feeling well either. Ugh!

Brooke did all the things they wanted her to while she was admitted the second time around...ate well, vomited little, gained weight, passed all the "tests" (EKGs, echos, labs, etc.). Yay! The nurses encouraged me to keep a little distance and rest as much as possible while she was there since I wasn't feeling well with stomach stuff. I think it was their way of getting rid of me so they could have fun with our little bundle. :) Boy do they LOVE her. Several times I would come in to check on Brooke, and one of the nurses or night cardiology fellows would be holding her. I love that they love her so. :)

12/2/14 - John finally recovered enough to make it to St. Louis, and his dad returned to Savoy. He spent most of his time in St. Louis recovering in bed the first day and half.

12/4/13 - Brooke was discharged (again)! :) We headed back home hoping that we would be here to stay...other than follow-up appointments every other week...and we have been!

12/18/13 - Our first cardiology follow-up back in St. Louis. Brooke checked out well overall. Her blood pressure was a bit high, so they did an echo to be sure everything looked okay with her heart. All looked good. Also met with the dietician to discuss changing Brooke's feeding plan as she hadn't quite gained as much weight as they'd like. Went home with a new plan and feeling good about our check-up.

Between 12/4 and 12/18 and since then... We've had a handful of home nurse visits, had a monthly RSV vaccination, had a visit from a physical therapist, changed Brooke's NG tube (that was fun), had phone consultations with our cardiology NP, changed Brooke's feeding plan twice, gave Brooke her first real bath just a couple of days ago, had a wonderful, quiet Christmas and fun NYE celebration here at home and have THOROUGHLY enjoyed being HOME together for an extended period!

With the most recent changes to Brooke's feeding plan, she is gaining weight better than ever. She is now mostly on a continuous feed (meaning she gets a slow, continuous feed through her NG tube all day and night) other than two small bottles per day. We were disappointed to have to go to this plan as it makes holding her and moving her around during the day much more cumbersome. But, we are thrilled with her weight gain! Our next cardiology follow-up in St. Louis is tomorrow (Thursday, 1/2).

Praises...

God's provision.... gifts, meals, financial blessings... We are SO humbled and grateful for each and every one.
Brooke's good weight gain especially over the past 4-5 days.
Brooke's PT said she is doing all of the physical things a two-month-old should be. Yay!

Prayer requests...

Pray for continued good weight gain for Brooke.
Pray for protection over her and the rest of us especially during this cold and flu season. A cold or the flu for Brooke can easily mean hospitalization. This is why we can have only a few limited visitors...and why anyone who walks through our door can't have been sick (or had a sick family member) in the few days to week prior.
Safe travel to St. Louis and back tomorrow.
Pray for all five of us as we transition into our new normal routine next week when John returns to work, Ab returns to school, etc. It's been SO nice and extremely helpful to have John home a lot this last month or so. And I've loved having my Abby home on break.
Pray for John and I as we figure out how to balance taking even a bit of time for ourselves individually throughout the week. With John returning to a normal work schedule, that balance will naturally become more difficult for both of us. Since we've been advised to keep Brooke at home other than for her appointments, I don't leave the house other than for those appointments and running an occasional errand (which will only happen on the weekends now with John being back to work next week).
Pray for us, too, as we try and balance time with our other two girls.