Bittersweet (more sweet than bitter) Update

As you might be able to tell from the title, we're not bringing Madeleine home today. While this is somewhat disappointing, we're actually encouraged by this turn of events. We met with the doctors last Thursday to plan out Madeleine's discharge plans and learned that Madeleine wasn't quite ready to be discharged. The first reason was that antibiotics were scheduled to run through Sunday meaning the earliest they would discharge would be this Wednesday. On Wednesday, Madeleine would be technically cleared to leave the ICU but the doctors were split on Madeleine's next step.

In short, all of the doctors wanted to find a medium step in between home and the ICU. At the hospital, there are no other options as all patients on a vent must be in an ICU according to hospital policy. Recognizing this reality, the only other option is a rehab facility. Kirsten and I were at first opposed to a rehab facility as we didn't want to go somewhere without a clear medical rationale as well as clear objectives for release. Some of the doctors-- while preferring a step-down facility-- preferred to default to the parents' preference and sided with us against other doctors who clearly preferred a rehab hospital. In the end, the meeting concluded at an impasse where the doctors agreed that the final decision lay with Kirsten and I regarding next steps. Since the doctors didn't agree on the path moving forward, they essentially left the ball in our court.

Kirsten and I were obviously frustrated and confused and we took last Thursday night and Friday morning to consider our options. We're obviously anxious to get Madeleine into our home but we're also reluctant to rush her home and then simply end back up in the ICU. (Been there, done that.) Here's the part that really confused us: despite all of the contrary medical opinions we heard, Madeleine looks absolutely fantastic. She has gained steady weight for the past two weeks and is now over 9 lbs (4.1 kilos). Additionally, over the past week she's made huge strides with her muscle strength and has recouped most of the head control and muscle functioning that she had prior to this last hospitaliziation. Over the weekend, Madeleine was able to follow along with Kirsten reading a book and she's back to wooing staff as they walk by her room. (seriously, many nurses and doctors have stopped as they're amazed by her rapid progress.) In short: Madeleine has made outstanding gains in the past week and we don't want to slow down this momentum.

We're fairly confident that Madeleine can continue these gains at home but we've decided to default to the Rehab facility for a few weeks. We made this decision for medical as well as lifestyle decisions. On the medical front, Madeleine's weight gain and other vitals will be monitored more closely in the rehab facility. At the facility, they will take regular X-Rays to ensure her lungs remain clear and they'll also check her blood work to ensure that her electrolytes remain stable outside of the ICU. There's no reason to believe that any of these issues will be problematic but we're essentially at the point where we want to do everything we can to prevent any additional setbacks. At the same time, Kirsten and I have turned our attention to a longstanding project: remodeling our kitchen. We originally planned on starting construction in our kitchen the week of March 3rd to overhaul our kitchen in advance of Madeleine's expected arrival in May. As you likely know, Madeleine was born on March 3rd and our garage has been filled with construction supplies and appliances ever since. Recognizing that Madeleine should come home and stay home when she finally gets home, we want to complete the construction in advance of her arrival. As Kirsten put it "The doctors won't let us the leave the house for 4 months once Madeleine leaves so we might as well install a kitchen that we like." I have to hand it to her-- she's more succinct than me. The next few weeks promise to be challenging for all. Madeleine is going to be pushed more than she's ever been pushed before as we expect her to continue to make progress and to make up for time lost. On our end, Kirsten and I are working like crazy to coordinate all of the contractors and we've even roped My Uncle Mike back for this new project. (You'd think he'd learn not to answer our calls!) We're a little concerned about the short timeframe for completing the kitchen but it sure feels nice to be back to our normal hectic lifestyle-- we've been treading water way too long.

In any case, the plan is to transfer Madeleine to the Hospital Services for Children (HSC) sometime this week-- we're waiting for a bed to open up. From a medical and lifestyle stance, this move won't change life for Madeleine or for us. HSC is located about a half mile from Children's (closer to our home) and HSC is run by Children's so Madeleine's primary doctors won't change-- just the nursing staff. Madeleine is going to be moved into the "premie express" floor where they only deal with babies that are considered to be "feeders and growers." There will be 6 babies and 3 nurses in the room at all times, so Madeleine should receive constant care. They do OT and PT on a daily basis and Kirsten and I will fill in as needed/possible. Our plan is to finish the kitchen and get Madeleine home by December 1 with the caveat that Madeleine has no additional setbacks (and we get the construction done.) We're expecting Madeleine to pack on atleast another pound and honestly hope that she comes home close to weighing 11 lbs. If she can pack on the weight, we'll finally believe that she's a true Bushey. :)

That's about it on the Madeleine front. I'm extremely remiss in posting pictures (as are the grandparents) but I'll try to get them up tomorrow-- the federal government is off for Veteran's Day. That's all on our end-- thanks for checking in.

Brent and Kirsten