Things are going really great in our household. I have a new job and am really enjoying myself. Kirsten's always had a great job and she does great at it. We're finally getting some time to work in our yard and Kirsten and I are starting to feel really great about how our house/yard look.
Most importantly, Madeleine's health continues to improve and we're cautiously beginning to think about weaning her from some of her medical devices. FYI-- we meet with our surgeon this Thursday to remove her sutures and make sure that all looks good. We'll likely switch out the existing feeding tube for a more permanent tube and we'll learn how to change the tube on our own at home (just another checklist on our joint MD degree.) We're also meeting with GI on Friday to discuss her feeding schedule and we hope to begin condensing feeds-- the time frame may be slower than we'd like but so long as we see progress, we're not going to complain. We're also meeting with cardiology next week for a check-up and also meeting with our pulmonary doctor where we hope to lay out a schedule for weaning Madeleine from the vent-- at least during the day time. This will be a complicated discussion as cardiology plays into it as does GI. Cardiology wants to make sure that Madeleine gets oxygen as it treats her pulmonary hypertension. GI has a say in the matter because the vent should ease the burden of breathing thereby enabling her weight gain. Since GI is in charge of managing weight gain, they need to consider how many calories per day Madeleine is getting. It all seems a bit complicated for a happy little 15 lb baby but hey, we're used to complicated when it comes to Madeleine.
In short: we couldn't be happier with Madeleine's progress and we have every reason to believe that her health will continue to improve to the point that at some point in the future (still well over a year away) she could be without any tubes/machines/weird medical stuff. I can't begin to tell you how great it is to honestly write that sentence. Given all the struggles we've been through the past 15 months, its a major relief to not worry about those major issues. (we still worry but not at the same level)
While we couldn't be happier with Madeleine's health, I know that I'm beginning to deal with the usual parent issues of "when will she crawl/walk/talk, etc?" It seems silly to worry about such issues-- especially since we know that these milestones will happen, just don't know when. Still, Kirsten and I have backgrounds filled with accomplishments and we're not accustomed to living life with a "wait and see" approach. Instead, we're used to surveying the landscape, setting milestones and then working like crazy to meet our milestones. With Madeleine, we're working like crazy (Madeleine's occupational therapist met with us today and remarked how persistent Madeleine is during her sessions) but we're unable to benchmark against traditional milestones. We've tried comparing Madeleine's development against traditional charts but they just don't work-- Madeleine's health issues are unique enough that she's all over the map. At the end of the day, I know that the milestones don't mean anything-- we know she'll eventually reach them. Still, its difficult not knowing what to expect and when we can expect it. I suspect that this feeling is normal for all parents and I'm being somewhat naive to assume that a healthy kid can be easily mapped against the existing milestone charts... perhaps I just need more experience at this dad thing.
Again, there's no need to be concerned-- I'm just expressing some of the frustrations that have been somewhat needlessly nagging at the back of my head. Despite these frustrations, I can honestly say that 5:00PM is my favorite time of the day as I get to leave my office and go home to an extremely happy and healthy baby girl. Life doesn't get better than that... Have a good one.
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