I've been spending a lot of time reflecting since Madeleine's birthday and can't believe that I've been a dad for more than a year. In some ways, I can't remember not being a dad-- it just seems natural that Madeleine is my daughter and is never far from my mind (Kirsten would enter "except when you are snoring and her ventilator alarm is going off.) On the other hand, it seems like yesterday that the nurse handed her to me for the first time... Just strange.
Kirsten and I have said countless times how lucky we are and I'm excited to go home to play with Madeleine every night. While Madeleine continues to do great, it is becoming apparent just how many developmental milestones Madeleine needs to clear. I have no doubt that she'll successfully navigate each milestone as they are easy when compared to the surgeries and struggles that she's already conquered. Still, from a parenting perspective its a marathon and its difficult to see the forest for the trees. I can accept that Madeleine will take longer to crawl, walk, eat, etc. but what makes it difficult is that I can't seem to identify any useful milestones and/or schedule that applies to Madeleine. I tried briefly looking over the What to Expect in Baby's first year book and that was so frustrating I almost threw it away. In some ways, Madeleine is quite advanced as she is extremely alert and interacts very well with her surroundings. From a physical standpoint, her hand eye coordination has greatly improved but she still lacks core muscles and strength that is normally found in babies as young as a few months old. In short: she's all over the developmental map and its a bit frustrating as I'm trying to understand how Kirsten and I can best help her develop.
I hope this message doesn't come across with a negative tone-- as I'm writing this I'm starting to understand better some of my frustrations and I'm making mental notes on what I need to do to address these frustrations. I'm absolutely ecstatic that Madeleine is home and is thriving and I'm glad that I can actually be frustrated by Madeleine's slow pace in life-- I would have paid millions just six months ago if you could have shown me the first two paragraphs of this post.
That's all for now. I'll do some more thinking and will post more thoughts and updates when I've cleared up things in my head. I hope you're having a good day.
Wednesday, March 18, 2009
Tuesday, March 17, 2009
Rededication to the Blog
Sorry for such a long absence on posts. I've been reluctant to post as we don't have anything "major" to post. However, I've been reading a few other friends' posts and I'm beginning to realize how cool it is to document the "little milestones" as Madeleine accomplishes them. We're sure to have some major medical issues prop up and I'll address them at some point but today, Dr. Dad is declaring that the blog will be re-focused on documenting Madeleine's small steps and we'll rejoice in this progress. I'm taking a quick break at work, but here's some of the progress she's made in the past few weeks:
- She came down with a cold and got over it! For most kids, that's expected. For Madeleine, this is the first time that she's been sick and hasn't had to go to the hospital. We're pretty excited.
- She is slowly improving her tummy time. Her core body strength is slowly improving-- excrutiatingly slowly but her ability to hold her head up is greatly improving and we're encouraged.
- She continues to roll over from her front to her back but hasn't figured out how to get back. We need to work on this.
- Our Physical therapist is encouraging us to play peek-a-boo with Madeleine. The therapist has noticed that Madeleine doesn't react when she drops a toy. I don't know exactly but I think the concept is called permanance something. (yes, that's a technical term) This is a cognitive step that Madeleine should master soon and our therapist believes that peek-a-boo will help develop this concept. Madeleine seems to enjoy peek-a-boo but she doesn't react in the same manner as others. We'll keep working on it.
That's about it for right now. Kirsten and I will get some pictures up in the next few days so that you can see Madeleine's growth. She's a lot of fun for us and we'll do our best to communicate out her progress.
- She came down with a cold and got over it! For most kids, that's expected. For Madeleine, this is the first time that she's been sick and hasn't had to go to the hospital. We're pretty excited.
- She is slowly improving her tummy time. Her core body strength is slowly improving-- excrutiatingly slowly but her ability to hold her head up is greatly improving and we're encouraged.
- She continues to roll over from her front to her back but hasn't figured out how to get back. We need to work on this.
- Our Physical therapist is encouraging us to play peek-a-boo with Madeleine. The therapist has noticed that Madeleine doesn't react when she drops a toy. I don't know exactly but I think the concept is called permanance something. (yes, that's a technical term) This is a cognitive step that Madeleine should master soon and our therapist believes that peek-a-boo will help develop this concept. Madeleine seems to enjoy peek-a-boo but she doesn't react in the same manner as others. We'll keep working on it.
That's about it for right now. Kirsten and I will get some pictures up in the next few days so that you can see Madeleine's growth. She's a lot of fun for us and we'll do our best to communicate out her progress.
Friday, March 6, 2009
Birthday Pictures
Greetings! It's Kirsten! I am new to this whole blogging thing, and I'll probably get in trouble for posting on Brent's blog... I'll take the risk to post some really cute pictures.
We celebrated as planned Madeleine's 1st birthday on Tuesday with our friends Becky & Steve. As you can imagine it was a wild and crazy party with the required hats, singing, cake and ice cream. Madeleine had a full day before the party started and we think she still wasn't 100% on Tuesday, but none the less she had a great night, with a few bouts of crying. Here are some pictures of the big evening..... http://picasaweb.google.com/brentbushey/March2009#
The rest of the week has been fairly quiet, with one trip to the hospital for you guessed it - pulling out her feeding tube... I tried to work my charm on the docs to convince them she needs a more permanent feeding tube placed, to no avail. They said she had to be 25+ pounds before we will place the 'peg'. Until then, I think the radiology department will get to know us VERY well.
Brent's 'up norf'' this weekend, ice fishing (I cannot honestly think of something I would like to do less) and Madeleine and I are catching up on our chick flicks and bonding as mother and daughter.
Ok, I think I have taken enough creative freedom.... I promise to not make a habit of posting!
Thanks as always for everything.
Kirsten
PS - I think I'll regret the plaid pants 30 years from now when I see these pictures at a wedding reception or anniversary party!
Tuesday, March 3, 2009
A Very Happy Birthday
Madeleine came home last night and is having a great birthday- she slept all night and woke up at 6AM raring and ready to go. Kirsten and I are ecstatic and grateful beyond words. When we look back on the past year, we're floored by all that we've learned and grateful for all of the blessings we've received. Most of all, we're just glad to be parents to a wonderful little girl.
Our plans for tonight are pretty simple. We can't have a ton of folks around as we don't want to risk an infection. Therefore, we're staying home and good friends are coming over for take out Chinese. Yes- its strange but it fits as this was my meal last year after the emergency birth- friends and family purchased it for me and it was awaiting me when I finally left the hospital. This year is much better as I get to share it with the same friends and the two ladies in my life. For dessert, my sister-in-law has mailed a cake- she's a baking savant- and I'm sure we'll have Madeleine smash up a piece of it. She can't eat it but I think she deserves the right to get sticky.
We'll take a bunch of pictures and I promise to post them ASAP. In the meantime, thanks again for everyone's support. I've said it many times and it bears mentioning again- we are humbled by everyone's support and caring throughout Madeleine's struggles and we hope to celebrate today and future milestones with you. Have a great day!
Our plans for tonight are pretty simple. We can't have a ton of folks around as we don't want to risk an infection. Therefore, we're staying home and good friends are coming over for take out Chinese. Yes- its strange but it fits as this was my meal last year after the emergency birth- friends and family purchased it for me and it was awaiting me when I finally left the hospital. This year is much better as I get to share it with the same friends and the two ladies in my life. For dessert, my sister-in-law has mailed a cake- she's a baking savant- and I'm sure we'll have Madeleine smash up a piece of it. She can't eat it but I think she deserves the right to get sticky.
We'll take a bunch of pictures and I promise to post them ASAP. In the meantime, thanks again for everyone's support. I've said it many times and it bears mentioning again- we are humbled by everyone's support and caring throughout Madeleine's struggles and we hope to celebrate today and future milestones with you. Have a great day!
Monday, March 2, 2009
Recovery going well
Madeleine should be coming home today as she seems to be getting over her cold. Yesterday she was weaned back to her home settings on the ventilator and the goal was for her to have a stable 24 hours. We've reached that goal and the only remaining hurdle is that we have to clear out the paperwork and can't take any steps backward. She isn't fully over the cold as she is still running low temperatures but yesterday she started acting like herself-- smiling at everyone and was very active so we're hopeful that the temps will subisde soon.
That's all for now. Her birthday is tomorrow and we're ecstatic to be celebrating it at home. Can't believe its been nearly a year....
Brent
That's all for now. Her birthday is tomorrow and we're ecstatic to be celebrating it at home. Can't believe its been nearly a year....
Brent
Saturday, February 28, 2009
Quick Update from Children's
Not much to report right now. Madeleine is about the same as she was on Wednesday meaning she's still fighting a cold and they're pretty convinced its just a virus. They have her on oral anti-biotics to prevent a bacterial pneumonia. She's running intermittent fevers and is generally grouchy-- pretty much like anyone else with a bad cold. The difference is that she's still on increased oxygen consumption and that's the factor keeping us from going home. We're hopeful that once she starts to turn the corner, she'll wean quickly from the oxygen and get on out of here. That being said, she hasn't turned the corner yet.
That's all-- nothing too bad just slow and frustrating. We wouldn't expect anything else!
That's all-- nothing too bad just slow and frustrating. We wouldn't expect anything else!
Wednesday, February 25, 2009
Deja Vu All Over Again
I think the quote above is fitting as I believe that Yogi Berra would appreciate my daughter. She's the only child that can go into the hospital, smiling at anyone who looks at her and yet still ends up getting admitted. Yup, that's right, Madeleine's back at Children's hospital and while Kirsten and I are disappointed, we're not too upset and think it was a wise decision. Madeleine has been fighting a cold since Sunday afternoon. Its nothing too serious-- its just a cold with the requisite fevers, snot, and general crankiness and irritability that characterizes most colds. The difference with Madeleine is that given her diminished lung capacity and propensity for getting really sick really fast, the doctors were concerned that the cold could rapidly progress into a full blown pneumonia.
Despite this concern, most of the data points to quick recovery from the cold and ideally no actual pneumonia. Blood tests are the first indicator of a bacterial infection-- pneumonia is typically a bacterial infection-- and the blood test taken this morning showed no signed of bacteria-- the white blood cell count was normal (6) and there were no new bands forming. (these "bands" can be an indicactor that the body is gearing up to fight a bacterial infection.)
While this was good news, the doctors were still concerned as we've had to increase Madeleine's oxygen support-- she's up from .5 liters to 3 liters-- and they were also somewhat concerned by the X-Ray they took this afternoon. The X-Ray wasn't definitive but it showed the potential for a pneumonia. Given the fact that Madeleine has run fevers intermittently for the last three days coupled with the increased oxygen support and concerning X-Ray and it ended up in a close call that resulted in us admitting Madeleine to the hospital.
In the end, we're hopeful that she won't develop pneumonia and will recover from this cold in the next few days. In the event that she does develop a pneumonia, Madeleine's in the best place to catch it and we'll likely catch the pneumonia in its early stages, thereby making it easier and faster to treat. In summary: this isn't a major step back and ideally won't be a long admission. We just chose the safe route to make sure that Madeleine doesn't develop a really ban pneumonia.
While the hospital admission is quite a downer, we do have good news: Madeleine has put on weight and now weighs 13 lbs 6 oz. Madeleine was released from Children's on January 3rd, weighing just under 10lbs meaning that in less than two months, Madeleine has gained nearly 3.5 lbs. She's still a tiny little thing but she's rapidly approaching the chubby little girl that we're all expecting.
That's all for now. I'll of course do a better job of posting information as we learn more in the hospital. We're hoping to be home soon and have told the doctors that we expect to be eating her birthday cake in our house next Tuesday!
Despite this concern, most of the data points to quick recovery from the cold and ideally no actual pneumonia. Blood tests are the first indicator of a bacterial infection-- pneumonia is typically a bacterial infection-- and the blood test taken this morning showed no signed of bacteria-- the white blood cell count was normal (6) and there were no new bands forming. (these "bands" can be an indicactor that the body is gearing up to fight a bacterial infection.)
While this was good news, the doctors were still concerned as we've had to increase Madeleine's oxygen support-- she's up from .5 liters to 3 liters-- and they were also somewhat concerned by the X-Ray they took this afternoon. The X-Ray wasn't definitive but it showed the potential for a pneumonia. Given the fact that Madeleine has run fevers intermittently for the last three days coupled with the increased oxygen support and concerning X-Ray and it ended up in a close call that resulted in us admitting Madeleine to the hospital.
In the end, we're hopeful that she won't develop pneumonia and will recover from this cold in the next few days. In the event that she does develop a pneumonia, Madeleine's in the best place to catch it and we'll likely catch the pneumonia in its early stages, thereby making it easier and faster to treat. In summary: this isn't a major step back and ideally won't be a long admission. We just chose the safe route to make sure that Madeleine doesn't develop a really ban pneumonia.
While the hospital admission is quite a downer, we do have good news: Madeleine has put on weight and now weighs 13 lbs 6 oz. Madeleine was released from Children's on January 3rd, weighing just under 10lbs meaning that in less than two months, Madeleine has gained nearly 3.5 lbs. She's still a tiny little thing but she's rapidly approaching the chubby little girl that we're all expecting.
That's all for now. I'll of course do a better job of posting information as we learn more in the hospital. We're hoping to be home soon and have told the doctors that we expect to be eating her birthday cake in our house next Tuesday!
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