Great Day!

I realize I promised last week that we would post more pictures and then never got around to it.... I am very very sorry for letting people down.

Now on to the good stuff:

This morning Brent, Deborah and I made the trek up to Children's hospital for two appointments. I bravely scheduled them 1/2 hour apart from one another (I know not my most brilliant move, but it worked). We met with surgery and the radiology. Let me summarize both appointments.

Surgery: The visit was scheduled as a 3 month follow up to the G-Tube/Nissen surgery to make sure the surgical site was clean and to discuss any challenges we may be having with the new set up. We covered that topic in about 30 seconds and moved on to MY real reason for being at the appointment. Two weeks ago I was in New Orleans for a work conference and while there Brent's parents so graciously offered to help out by coming and taking care of Madeleine so Brent wouldn't be up to his eyeballs in my absence. Of course I obsessively called every 2 hours or so and kept hearing them tell me that her colostomy bag was falling off. I figured it was just that the weren't doing it right ( no offense Kay & Rick) and that once the old pro got back we would get back on track.... Ohhh no. I was wrong. It seems that while I was gone Miss Madeleine decided to start rolling and doing commando moves all over our living room. As you can imagine this is not conducive to keeping a colostomy bag on for any length of time. As a result since the 31st of July we have changed the colostomy bag every single day. To give you some context, under normal circumstances this should only need to be changed every 5 days. To keep it clean- we have had some MONUMENTAL blow outs (think head to toe) since Madeleine has become more active.

So, back to today. Over the past week I have met with or spoken to every one of her specialists to discuss the idea of doing the reattachment surgery ASAP before the Flu/RSV season hits in late October. We had initially thought that we would reconnect in the early spring however the prospect of changing bags every day from now until April was daunting, to say the least.

After staying up much of the night worried about how the conversation would go and how we would have to plead our case on how awful it is to change that stupid bag every day the doctor walked in and said "So I hear you want to do the reconnection soon, great! I'll put you on the schedule in the next few weeks" It seriously could not have been any easier. Actually, I felt cheated out of a good health medical debate, if you must know the truth. We are waiting for the scheduling team to call to put us on the calendar. I know it WON'T be the first two weeks of September b/c her Cardiologist will be on vacation and doesn't want her in the hospital while he is gone. If we could do it tomorrow, I would.

Radiology: We went down to the fluro lab where Madeleine is nearly a rock star from back in the days of her constantly pulling out the NJ tube (this is where we would go to get it put back in). Today we were there for a Modified Barium Swallow (MBS), otherwise known as a Swallow study. Over the past few months we have been introducing food so that we could get her to learn to like having food in her mouth again. We started by playing with it and then slowly we started giving it to her in very small quantities. Last August, when many of the really big problems began, we determined that Madeleine was not able to protect her airway and this lack of protection is why she would get aspiration pneumonia's on a biweekly basis. The Nissen surgery helped us make great strides with the reflux and once she recovered from the surgery the next step was to do the MBS to determine if she was now able to protect her airway. If we could prove that she was able to eat properly we could start advancing mouth feeding. Easy enough, right? Wrong. You can't just expect a child who has not had anything in their mouth for almost exactly a year to say mmmm peaches or yummy pears. So after slowly introducing food and spitting 90% of it out for the past month we determined earlier this week that she was swallowing some of it! Thank god, b/c the appointment was set and I didn't want to reschedule because she wasn't ready.

Today we went in, strapped her in to the chair and gave her barium while they did continuous x-rays to determine whether or not food was going down the right way and she was able to protect her airway. As you can imagine she wasn't a real big fan of the chalky baby food we presented her with, but after prying her jaws open we were able to get some in her mouth and she swallowed it perfectly!!! We moved on to 'thin liquids' aka juice, and she did very well with that as well. Overall, we got an A+. We were given the directive to continue to 'advance feeds' and meet with our GI doc next week to determine our future course of action. I think it is safe to say it will be a very long time until Madeleine gets the majority of her nutrition via her mouth, but the fact that she can have food in her mouth is monumental.

All in all, a fantastic day at the hospital.

As for the rest of the summer we have had quite the whirlwind including a family vacation to the Outer Banks, a get away for Brent and I to New Orleans, a visit from old friends and coming up soon a trip to visit the Michigan clan. Madeleine is on a much more normal schedule with longer naps and an earlier bed time and she plays very hard during the day. She is off the vent 8 hours a day (two 4 hr periods) and we are working towards only being on the vent when she is sleeping.

I cannot say enough how much fun we are having and how the little things remind us of how far we have come. Here are just a few tid bits:

- Madeleine is incredibly tickleish. She laughs with her whole body when you tickle her.

- Diaper changes can be likened to a WWE event

- When we go to the doctor her medicines all fit on one page (this was a victory in my book!)

- She gives hi-five

- She loves blowing bubbles with me

After writing this I need to once again thank Brent for the hundreds of posts over the last 18 months. It is a lot of work that I often took for granted.

Take care, hope to see you soon. Check out a few *hundred* more pictures on our picassa site.

We've taken too many pictures!

According to my mother the 'troops are getting antsy' and we need to post... Fear not- everything is WONDERFUL and that's why we haven't posted. Brent and I are having so much fun we forget to blog. We discussed the need to blog today and then realized that we had too many pictures on our Picasa site and needed to upgrade to a larger account. I guess there is a 24 hr waiting period on posting after you increase your account size. We have so many stories that are much better with pictures, I don't want to tell them without the accompanying pictures. Anyways, tune in tomorrow and we will have a full post outlining the last month of our lives which will give you a better understanding on why we haven't posted. Suffice it to say Brent and I are back to our old ways going a million miles a minute.
I feel like the TLC producers of Jon & Kate ---- what a teaser right?
Take care,

Kirsten

Happy John Henry Days

Wow-- its been a long time since I've posted. I got a call last night from a friend concerned that things might be wrong since I hadn't posted so long. Let me assure you-- it would be hard for life to be better for us. Madeleine continues to progress at a great pace and we're busy being "normal" parents, working hard and playing hard with Madeleine.

In any case, I hope you all have big plans for the holiday weekend as I'm sure you're aware that this weekend is John Henry Days here in Talcott, West Virginia. Kirsten and I decided to make the trek out to our cabin last night with Madeleine. If you're a long time reader of this blog with a good memory, you'll remember that a year ago, we brought Madeleine out here for the big celebration and she was just a few days removed from the NICU. (click here for a link to the post last year.)

I'll try to post a bunch more this weekend as I have lots to update (including pictures_) but here's a quick run-down of accomplishments over the past few weeks:

- Kirsten and I spent a weekend away from Madeleine for our fifth wedding anniversary. (can't believe she's put up with me that long.) The weekend was possible as Kirsten's parents took over parent duty for Saturday and Sunday. They did a great job and while excited about it, they were ecstatic when we showed up on Sunday to take over. Despite Madeleine's great strides, she's still a complicated little girl.
- Madeleine is doing great being weaned from the vent. We're officially at the point where she is off the vent for two three hour periods. While that sounds good in theory, we don't live life by the clock so we're rapidly approaching the point where we have her off the vent when she's awake and happy. When she's tired and/or cranky, we put her back off the vent. By August, we're confident that she'll be off the vent all of the time when she's awake. (We're not far off now.)
- Madeleine is still getting all of her nutrition through her feeding tube but we're giving her daily "tastes" in her mouth. Michiganders reading the blog will be happy to hear that Madeleine is a big fan of Vernors but she doesn't seem to like apple juice much. If you've ever had Vernors, you should be shocked-- I love it but its ginger ale on steroids. We're going to try out a few other flavors this weekend. We don't give her much fluid-- usually just have her lick a clean wash cloth. The goal is to get her comfortable with taste in her mouth.

Okay-- that's all for now. The river is calling my name. Check back later for lots of pictures and hopefully some good updates from John Henry Days.

First Swim

Hey All,

We had a great weekend hanging out at our house working on the yard and walking around with Madeleine without any cords. We're now up to two one-hour periods/day and she is really doing great off the vent. We increase these periods to 90 minutes tomorrow and then to two hours this weekend. Madeleine enjoyed hanging out in the hammock with cousin Liz:

She enjoyed styling her new bathing suit:

She also really enjoyed cooling off in her pool.

I think the best part about the video is that I didn't even think to point out that she didn't have any cords attached-- its already feeling normal.

That's all-- just a normal weekend around the house... Not that anything has ever been normal in our household... We've uploaded a few more pictures to picasa here. Have a great week.

No cords

If I could put into words how happy I am to write the title to the post, you'd be reading for quite a while. Instead, I'll keep it short-- I just held my daughter in my house and she wasn't attached to any cords. This isn't permanent and we still have a long way to go. Still, it was pretty revolutionary and-- we have a short video to prove it. I'll write more later-- tonight is for celebrating. Enjoy!This is KW writing: We looked out windows and went outside and then we looked in the mirror. All by ourselves!!!! Then we checked out the kitchen... Endless places to look!!! It seems so unreal. We have started with 30 min. sprint trials off the vent. Every few days we can increase the duration as long as she handles it well. Goal: By August to be off he vent all day. Speechless.

Going good but...

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.

Sitting up on her own

All,

I'm busy working in the yard but am taking a break to post this video-- it may not look like much, but Madeleine spent nearly an hour today sittin gup on her own. She still needs the boppy around her for her hands but we don't really consider this cheating. Her therapist explained that children with Down's have extremely short limbs and with short arms, it is much harder for her to balance with her hands. The pillow is there so that she doesn't fall all the way over when she uses her arm for balance. Eventually, she'll be strong enough where it won't matter.

As you can see from the video, she is quite enthralled with Baby Einstein as well: