Day Three

Today can be summed up by Kirsten's comment this morning "these are the things that normal families get worked up about at the hospital." As you might be able to tell from the comment, Charlotte is doing fine but has hit her first "speed bump." Kirsten and Charlotte have been working very hard to get nursing down and while I couldn't be prouder of the two of them, Charlotte has lost a little bit of weight (she's down to 6 lbs 7oz) and her bilirubin levels have necessitated that she "go under the lights." Fortunately, the lights come in a handy-dandy blanket format that allows us to keep her in the room and to keep nursing. Here's a picture of our glowing baby:


The good news is that Kirsten continues to work extremely hard on nursing and so far, she hasn't had to supplement with formula. We're not entirely opposed to using formula but if possible, we'd prefer to nurse. Again, its something we're focused on but not really too worried.

We've gotten a ton of comments about Madeleine's photos in the room as its pretty obvious that Madeleine has matured a great deal since my last blog post. (sorry bout that.) In any case, Madeleine is staying at home keeping her nurses and grandparents (Kirsten's parents) extremely busy. We're ecstatic to report that Madeleine is making great progress in her swimming lessons (she started last week) and she's gotten to the point where she begs to be dunked under water. Its hard to imagine that a child that had her trach removed in late May could take to water so enthusiastically. I've been staying at the hospital with Kirsten getting accustomed to Charlotte and her healthy lungs (wow-- big difference) and we're looking forward to Thursday when we go home and start getting settled as a family.

That's all for now-- check out our picasa site here for additional photos of Charlotte. I've also posted photos of Madeleine (and family) from July 4th weekend out on Kirsten's parents boat. Hope you enjoy!

A New Addition

We'd like to take a moment to introduce the newest member of our family: Charlotte Elizabeth Bushey was born on Sunday, July 11th at 9:13am weighing 7lbs 3 oz and 21 inches long. Mom has been a champ throughout and all of my girls are doing pretty great. Here's a picture of the whole family:

That's not a bad looking family, eh? Check out our picasa site here for more pics.

Two Years? Really?

(This was supposed to post last night) Have two years really passed? I remember Madeleine's Birthday vividly including:- Picking Madeleine up for the first time. She was so tiny and I wasn't sure I should pick her up. The NICU doctors had to assure me repeatedly that she was stable before I'd pick her up.- Bringing her over to Kirsten and seeing their eyes meet for the first time. My wife is a natural mother and that first glance made it immediately apparent to me.- Wheeling her down the hallway with the NICU doctors- they let me push the bassinet as they were under staffed- and then signing her into the NICU. I had to ask the admitting nurse for the date and she smiled and said "March 3rd is a date you'll never forget." Boy was she right.- Running frantically back and forth between the post-op room where Kirsten was recovering and the NICU- desperately wanting to be with both my wife and daughter. - Running into my father-in-law in the hallway when dashing back and forth. Steve had somehow slipped past the front desk nurses to see if everyone was okay. (I'd made one frantic call earlier that day telling my in-laws that the baby had to be born emergently and then hung up after giving them the name of the hospital.) I'll never forget Steve's expression when I told him that his daughter and granddaughter were resting peacefully.- Calling my parents to tell them the news. I talked with my mom first and then called my dad. My poor dad was in Northern Michigan driving between towns as he was spending the week judging choirs at choral festivals. My mom had been calling him but the reception in Northern Michigan was so poor that he kept dropping calls and he didn't know if the baby was okay. He was pulled over on the side of the road when I reached him and I was so overcome with emotion that I couldn't get any words out. I remember standing in the visitor's waiting area blubbering and crying, trying to tell him that he had another granddaughter to worry about. It took me forever to get the words out and I can remember everyone in the waiting room staring at me while my dad was screaming through the other end of the line for me to calm down and talk. - I remember going upstairs with Kirsten to her room and making sure that she was settled for the night. I wanted to make sure that she was going to be okay but Kirsten finally told me that I could go back downstairs to see Madeleine as it was painfully obvious that I wanted to get back downstairs ... I kissed Kirsten good night and raced back to the NICU.- I remember finally leaving the hospital sometime after midnight and going over to our good friends' house for take-out Chinese. I hadn't eaten all day and the cold Chinese was just what the Doctor ordered. I was exhausted but could hardly sleep, calling the NICU throughout the night for updates on Madeleine.
I could go on as most reading this blog are well aware that I can talk about Madeleine for hours on end. So, how the heck have two years passed? It's strange because being a dad feels extremely natural to me and I really struggle to think of myself without the label "Dad.". At the same time, has it really been two years? I think of all the challenges Madeleine faced, all of the surgeries, all of the true heroes we met at Holy Cross Hospital and then Children's hospital, all of the milestones that Madeleine has reached (yes, I'm aware that I'm woefully behind in updating you on her progress. Trust me, she's doing great) and all of the amazing moments when I walk into a room and I know that Madeleine's toothy, dimpled grin is for her big old goofy Dad and I guess it really has been two wonderful years... I guess I'm just one heckuva lucky guy. Happy Birthday Madeleine!

But I don't wanna go to sleep

We've started a new routine this week with Madeleine of reading in the chair next to her bed and then putting her down immediately after reading. (we usually finish with Goodnight Moon-- that's such a great book.) In the past we've read some nights and others we've just spent time playing or rocking until she falls asleep. It is nice to have her fall asleep against you (okay-- its better than nice, its really awesome) but Madeleine is getting to the point that she can fight off sleep for hours and all that ends up doing is throwing everyone's routine off.

In any case, we finished reading tonight and I laid her down in her crib. Prior to reading, I had changed her diaper with her lying in the crib. I can't remember if I've mentioned but due to Madeleine's lack of a large intestines, her stool (still my favorite parent word) is rather watery and requires a strict policy of Ilex paste (a thick paste) against her skin and then a second layer of vaseline to cover the Ilex paste. (Yes, we go through a LOT of vaseline every week... I've gotten some strange stares at the drug store.)

In any case, I was cleaning in the kitchen and heard Madeleine banging around in her crib-- when she doesn't want to go to sleep, she sits up and usually plays with the suction machine or any other cord that she can get her hand on. I planned on giving her a few minutes in the dark before I went back in to lay her down when all of a sudden, I heard her crying frantically. I immediately went into the room as Madeleine rarely crys and when I turned on the light, her face shone back at me. I didn't think to take a picture but it became immediately clear that she had taken the top off the vaseleine tub that I'd left in the crib and had smeared vaseline all over her face. She wasn't very happy when I rubbed it off but that wore off as soon as I stopped scrubbing. I laid her back down once she calmed down and she fell asleep almost immediately. Too funny.

I will say this much-- her skin felt extremely soft when I rubbed her cheek before walking out. I'll let you know if her skin is soft and radiant tomorrow morning. Who knows? Perhaps she'll start a new fad... Have a good night.

Madeleine's Development and Our Basement

About a month ago... you know, right about when we stopped blogging for a while... we decided that it was high time to take back our living room from toy clutter. We'd been tripping around Madeleine's toys for quite some time when we finally realized that we had a whole finished basement that we were just using to collect boxes and other clutter. We realized that by failing to use the basement, we weren't only denying ourselves and our visitors a chance to enjoy a relaxing time in our living room but we were also limiting Madeleine's development.

That may sound a bit drastic but let me explain. Madeleine, like her father, is extremely distractable and extremely social. Additionally, with Down Syndrome, Madeleine's impaired cognitive level makes it more important that she focus on specific tasks. (Note: Children with Down Syndrome can have drastically varying IQs ranging from slightly mentally retarded to more severe and at this point we really don't know Madeleine's IQ or cognitive functioning level. Regardless, all children's with DS have some level of mental retardation. Recognizing thsi fact, Kirsten and I are determined to provide the best opportunities for Madeleine so that she can maximize her cognitive ability.) When we kept her toys in the living room, it was common for the television to be on making it difficult for her to focus on toys and/or specific tasks. Even when the television wasn't on, the clutter caused by the large number of toys and limited space made it hard to keep the visual diarrhea from distracting her. We're blessed with the option of using our basement for play space and we decided to lay out colored interlocking sponge tiles in the basement to provide a colorful and lively environment that is also comfortable for Madeleine as well as ourselves and nurses that work with Madeleine. Here's one picture of the basement and others are posted here:

I've provided details with the pictures in Picasa but as you can see from this picture, the basement tiles look really great-- our nurses have asked if we plan to open a daycare... answer: yes, a daycare for Madeleine and only Madeleine. We're slowly working with our nurses to figure out how we can best use this space to further Madeleine's physical and cognitive development and, oh yeah, have some fun too!

That's all for tonight-- just thought I'd give some quick details on one of our major projects. We have lots more to update-- will post it in the coming days.

The Difference A Year Makes

Yup-- we had a pretty special Christmas yesterday. We've posted more pictures of Christmas morning (as well as the rest of Decmeber) here. As you'll see from the pictures, we spent yesterday in our house with Kirsten's parents. Santa was very good to Madeleine and we have some action photos with the wrapping paper. Madeleine didn't fully grasp the notion of unwrapping gifts. We expected her to tear into the wrapping paper much as she does with our newspaper every week but instead, she was very delicate with the paper and didn't really rip and tear. We spent the rest of the day napping, cooking, and playing board games.

I'll post more about all of Madeleine's medical progress later but in the meantime, we hope you enjoy the pics. Merry Christmas!

Vindication

All,

I will be the first to admit that sometimes I get fixated on things- particularly when it comes to Madeleine. I get completely wrapped around the axle and cannot stop thinking about whatever the problem is until I come to resolution. People who work with me experience it 1st hand daily (sorry). Anyways, rarely are there articles in the newspaper backing up my assertions so CLEARLY as this one.... I couldn't let the opportunity pass.

This was in today's Post Express - a free publication given to Metro riders. The text which you cannot read in the image states that the incidents of Flu peaked on October 26th... A mere week after we were discharged. I TOLD YOU IT WAS BAD!

Anyways, Brent would like me to add this footnote - I am not a lunatic ** at least in this instance**.

All is good here - We converted the basement to a daycare center, although there is no way I'll be putting out a shingle. It's a daycare center for one. We'll post pictures when it's complete. Those who have seen it are very impressed.

Take care,