Thanks to all that showed up yesterday at Madeleine's "coming out" party. Before I provide further details about Madeleine's development (she's looking great), Kirsten and I want to send out a few thank yous:
- First-- thanks to my sister-in-law Sarah Bushey. While raising three kids under the age of 5, she planned a great party yesterday and worked extremely hard.
- Thanks to everyone else that came out yesterday-- it was great to see so many folks that have been invested in Madeleine's life and various medical challenges. At the end of the night, Kirsten and I were floored by all of the different people we spoke with throughout the day and we're awed by the great people we know. Thanks again.
Okay, with that out of the way, I'll provide an update on Madeleine's medical progress. Our primary focus (and worry) has been on Madeleine's feeding/reflux issues. On its own, reflux isn't that big of a deal-- it is essentially baby heartburn and while painful, its not a major problem. Unfortunately, Madeleine's reflux can cause major problems as at times, she is unable to clear her windpipe. The most important concern is that a blocked wind pipe can lead to aspirations of milk into the lungs but this doesn't seem to be a major problem for Madeleine-- she is good at coughing and keeping fluid out of her lungs. The downside is that at times, her blocked passageway can cause her heart rate to drop to dangerous levels. When we left for Michigan, we thought the reflux was under control but it became worse and Madeleine had a number of bradycardia (low heart rate) episodes. We spoke with Madeleine's doctors and were close to returning to DC when we finally figured out a way to feed Madeleine without causing problems.
Our current approach is to bottle feed Madeleine when she shows interest in the bottle but we don't push her-- usually feed just about 15 minutes. Once that is done, we put the remaining formula into a syringe and hook it up to the feeding tube. We allow the food to flow into her stomach until there is about 20 cc's remaining. (She gets a total of 70 cc's every three hours.) With 20 cc's remaining, we take a ten minute break before feeding Madeleine the remaining formula. This break seems to allow Madeleine's body a chance to process food inside her stomach and has significantly decreased the number of bradycardia incidents-- only once in over 48 hours. We expect to have some more rough spots as Madeleine continues to grow but we feel like we've made a major turning point in her feeding regimen and we're hopeful that this will allow her to grow more effectively. In the long-run, we're convinced that Madeleine's reflux will improve and she'll be able to take all her feeds via bottle. While that is likely months away, right now, we're just happy that Madeleine can eat and grow and we'll worry about those other milestones later on.
Thanks again for everyone's support. I'm actually headed out of town with my dad and Kirsten's dad as we're headed to four baseball stadiums in four days (Cleveland, Detroit, Chicago, and Milwaukee.) Kirsten is going to be in Mid-Michigan and she'll continue to Madeleine tour of various family and friends' homes.
Take care and have a great weekend.
Brent and Kirsten
Friday, July 25, 2008
Tuesday, July 22, 2008
Up in Michigan
I'm pretty sure that's a title of one of Ernest Hemingway's short stories-- don't quote me on it but I think that's true. In any case, it also describes where we are. We finally got on the road yesterday afternoon after Madeleine's milk scan and after changing a flat tire (seriously). After the drama of the past few weeks, we were relieved when the car trip was uneventful.
I'll post more about the medical updates as well as pictures and other thoughts when I have more time. However, I wanted to get a post up so that folks know where we are. Thanks again for everyone's support.
Brent and Kirsten
I'll post more about the medical updates as well as pictures and other thoughts when I have more time. However, I wanted to get a post up so that folks know where we are. Thanks again for everyone's support.
Brent and Kirsten
Sunday, July 20, 2008
Back at Home
Madeleine was released from the hospital today and we're rather confident that we've gotten her breathing/bradycardia issues under control. The doctors still want to conduct a milk scan on Monday morning to be sure that there are no major problems but we think that the changes we've made have solved the immediate issues. To recap, we've made the following changes:
- We're adding rice cereal to thicken the formula when she bottle feeds.
- Reglan has been added to her regimen to help with her reflux.
- We're going to be much more conservative when bottle feeding-- when Madeleine shows that she doesn't want to eat, we're going to use the feeding tube rather than push her too far.
With these three changes, we're pretty confident that it will solve the breathing and heart issues that were affecting Madeleine and led to her admission to the hospital. Assuming that the milk scan doesn't reveal anything major, we're hoping to leave for Michigan after the test tomorrow morning. (the doctors have already cleared us pending the milk scan.)
In short, we're ecstatic and hoping to be in Michigan late tomrrow evening.
- We're adding rice cereal to thicken the formula when she bottle feeds.
- Reglan has been added to her regimen to help with her reflux.
- We're going to be much more conservative when bottle feeding-- when Madeleine shows that she doesn't want to eat, we're going to use the feeding tube rather than push her too far.
With these three changes, we're pretty confident that it will solve the breathing and heart issues that were affecting Madeleine and led to her admission to the hospital. Assuming that the milk scan doesn't reveal anything major, we're hoping to leave for Michigan after the test tomorrow morning. (the doctors have already cleared us pending the milk scan.)
In short, we're ecstatic and hoping to be in Michigan late tomrrow evening.
Friday, July 18, 2008
Sloooooow Progress
(I typed this last night and forgot to post-- thus the references to yesterday)
It was a long and somewhat frustrating day at the hospital today but we did make some progress in determining what is the potential cause of Madeleine's low heart rate (bradycardia) and potential obstructed apnea. (See yesterday's update for medical details that led to Madeleine's admission to the hospital.) Before explaining further, I need to be clear about one issue: Madeleine is doing just fine. She is no different today than she was the past two weeks when we had her home. The only difference is that yesterday at a routine check-up, the pulmonologist downloaded data from Madeleine's monitor and was concerned that Madeleine may be aspirating formula. Since aspiration can lead to serious damage to her lungs, they decided to admit her and to determine what is going wrong.
The doctors have outlined three tests that they want to perform: a swallow test, a milk scan, and a sleep test. The swallow test was conducted today. During this test, Madeleine was fed barium fluid via bottle that is monitored via X-Ray. Essentially, the test looks to see if any aspiration occurs when the food is on the way to the stomach. After about 5 minutes of feeding, the doctor added a thickening agent-- rice cereal-- to the bottle and then monitored Madeleine's swallowing again. We expected to see some form of aspiration but were somewhat surprised to find that Madeleine didn't aspirate. This is somewhat confusing because Madeleine has had no episodes of bradycardia since being admitted to the hospital and the only change has been that Madeleine wasn't fed via bottle yesterday. Instead, the doctors wanted to avoid any potential swallow problems so Madeleine has been fed via her tube. The confusing part is that the milk scan and the sleep test, while potentially illuminating, don't seem logical to identify the problem. After all, she isn't having any problems when she is sleeping and she isn't having problems with food that she isn't ingesting via her mouth as evidenced by the fact that she hasn't had any issues since she's been in the hospital without bottle feeds. There's still a chance that either test could identify factors that contribute to the bradycardia but we're fairly certain that these tests won't identify the primary cause.
While we were confused for a bit, we think we figured it out. The problem with the swallow study is that it only lasts about ten minutes. They're reluctant to go any longer as the radiation that Madeleine is exposed to is fairly significant. However, the majority of Madeleine's bradycardia events occurred after a fairly lengthy feeding episode-- usually 20-30 minutes. Therefore, it makes sense that it didn't show up in the swallow study. In talking further with the speech pathologist, we're fairly convinced that we've been pushing Madeleine too hard to bottle feed and she simply needs some to grow and develop the muscles associated with feeding and swallowing. This reason makes more sense as we watched Madeleine bottle feed with the speech pathologist yesterday and she pointed out how Madeleine dribbles much of her food out the side of her mouth once she starts to show signs of fatigue. Given Madeleine's small size and her Down Syndrome, the theory is that her swallowing muscles become fatigued and if we keep forcing her to bottle feed, her tired muscles may prevent her from swallowing properly and may lead to aspiration.
Given the results of the barium test and the outlined theory above, the doctors made the following changes: they've added rice cereal to her formula feeding and have added reglan to her combination of medicines. The rice cereal will slightly thicken her formula making it less likely that Madeleine will aspirate. Additionally, they added reglan to her medicine regimen to see if this helps eliminate Madeleine's reflux. With these two changes, they re-started bottle feeds last night and hope that Madeleine won't have any bradycardia episodes. We'll see how this approach works and then we'll make future plans. Right now, we think its likey that they'll keep Madeleine through the weekend for observation and then Madeleine will undergo the milk scan on Monday. If all goes according to plan, we're thinking that Madeleine will get released after the milk scan on Monday. If this is the case, we're hoping to get on the road for Michigan on Tuesday. Of course, we'll re-evaluate the plan each day and we're not going to do anything that puts Madeleine at risk.
We'll definitely provide an update on Saturday night. Take care,
Brent and Kirsten
It was a long and somewhat frustrating day at the hospital today but we did make some progress in determining what is the potential cause of Madeleine's low heart rate (bradycardia) and potential obstructed apnea. (See yesterday's update for medical details that led to Madeleine's admission to the hospital.) Before explaining further, I need to be clear about one issue: Madeleine is doing just fine. She is no different today than she was the past two weeks when we had her home. The only difference is that yesterday at a routine check-up, the pulmonologist downloaded data from Madeleine's monitor and was concerned that Madeleine may be aspirating formula. Since aspiration can lead to serious damage to her lungs, they decided to admit her and to determine what is going wrong.
The doctors have outlined three tests that they want to perform: a swallow test, a milk scan, and a sleep test. The swallow test was conducted today. During this test, Madeleine was fed barium fluid via bottle that is monitored via X-Ray. Essentially, the test looks to see if any aspiration occurs when the food is on the way to the stomach. After about 5 minutes of feeding, the doctor added a thickening agent-- rice cereal-- to the bottle and then monitored Madeleine's swallowing again. We expected to see some form of aspiration but were somewhat surprised to find that Madeleine didn't aspirate. This is somewhat confusing because Madeleine has had no episodes of bradycardia since being admitted to the hospital and the only change has been that Madeleine wasn't fed via bottle yesterday. Instead, the doctors wanted to avoid any potential swallow problems so Madeleine has been fed via her tube. The confusing part is that the milk scan and the sleep test, while potentially illuminating, don't seem logical to identify the problem. After all, she isn't having any problems when she is sleeping and she isn't having problems with food that she isn't ingesting via her mouth as evidenced by the fact that she hasn't had any issues since she's been in the hospital without bottle feeds. There's still a chance that either test could identify factors that contribute to the bradycardia but we're fairly certain that these tests won't identify the primary cause.
While we were confused for a bit, we think we figured it out. The problem with the swallow study is that it only lasts about ten minutes. They're reluctant to go any longer as the radiation that Madeleine is exposed to is fairly significant. However, the majority of Madeleine's bradycardia events occurred after a fairly lengthy feeding episode-- usually 20-30 minutes. Therefore, it makes sense that it didn't show up in the swallow study. In talking further with the speech pathologist, we're fairly convinced that we've been pushing Madeleine too hard to bottle feed and she simply needs some to grow and develop the muscles associated with feeding and swallowing. This reason makes more sense as we watched Madeleine bottle feed with the speech pathologist yesterday and she pointed out how Madeleine dribbles much of her food out the side of her mouth once she starts to show signs of fatigue. Given Madeleine's small size and her Down Syndrome, the theory is that her swallowing muscles become fatigued and if we keep forcing her to bottle feed, her tired muscles may prevent her from swallowing properly and may lead to aspiration.
Given the results of the barium test and the outlined theory above, the doctors made the following changes: they've added rice cereal to her formula feeding and have added reglan to her combination of medicines. The rice cereal will slightly thicken her formula making it less likely that Madeleine will aspirate. Additionally, they added reglan to her medicine regimen to see if this helps eliminate Madeleine's reflux. With these two changes, they re-started bottle feeds last night and hope that Madeleine won't have any bradycardia episodes. We'll see how this approach works and then we'll make future plans. Right now, we think its likey that they'll keep Madeleine through the weekend for observation and then Madeleine will undergo the milk scan on Monday. If all goes according to plan, we're thinking that Madeleine will get released after the milk scan on Monday. If this is the case, we're hoping to get on the road for Michigan on Tuesday. Of course, we'll re-evaluate the plan each day and we're not going to do anything that puts Madeleine at risk.
We'll definitely provide an update on Saturday night. Take care,
Brent and Kirsten
Thursday, July 17, 2008
Not Such a Good Day
Today was planned for our big trip to Michigan. We packed the car to the gills as we expected to be in Michigan and West Virginia for the next two weeks. With two dogs and a little girl with lots of medical issues, it was a crowning feat for me to get everything in the car. We whisked Madeleine into the car for her first appointment with the pulmonary clinic at Children's hospital. Given Madeleine's continued improvements, we expected a short doctor's appointment and then we were heading back home to pick up the dogs and get on the road to Michigan.
Of course, the best laid plans of men and mice....
We met with the pulmonologist this morning and they downloaded data from the monitor that Madeleine wears. The monitor tracks three things:
- Fast heartrate (tachycardia)
- Slow heartrate (bradycardia)
- Slow breathing (apnea)
We haven't had any alarms for fast heartrate so that wasn't an issue. However, we've had alarms for both apnea and bradycardia. We've spoken with our pediatrician as well as with Madeleine's cardiologist and they weren't overly concerned-- often the machine has false readings and since Madeleine appears to be improving, they weren't too concerned. The pulmonologist had the benefit of downloading the data from the machine and she told us that the apnea episodes logged by the machine were inconsequential and of no concern. However, the bradycardia events demonstrated a great deal of concern. To be clear, Madeleine's heart never went exceedingly low but by looking at the heart output (the squiggly lines), the pulmonologist could see that her breathing dropped significantly prior to the bradycardia events. This was confusing to us at first because the machine didn't show problems with apnea but we learned that there are two types of apnea. In premature infants, "central" apnea is common. This type of apnea occurs when a baby's nervous system is immature and the baby simply forgets to breathe for an extended period of time. Adult apnea-- the kind where you snore really loud-- is considered to be "obstructed" apnea because something blocks the breathing canal and prevents one from breathing. (snoring is just a partially obstructed breathing canal.) Madeleine's machine only monitors central apnea as it is designed to monitor Madeleine's chest movements. In obstructed apnea, the chest continues to move as the body is trying to breathe but is unable due to an obstruction.
I apologize for the lengthy description but I think it helps understand what is going on with Madeleine (at least it helps me to explain it in this manner.) The question that remains is what is causing the obstruction? The immediate concern is that Madeleine is aspirating formula into her lungs, thereby blocking the breathing passage and potentially damaging her lungs. Its unlikely that any major damage has occured to this point but given the potential for further damage, the doctors recommended admitting Madeleine into the hospital today so that further tests can be conducted. In other words-- I'm typing this from my house and Madeleine is back in the hospital.
We're obviously disappointed by this development as we were really looking forward to showing Madeleine off in the Midwest. Furthermore, we felt like we were beyond major medical issues-- at least in the short term-- and today has been rather difficult for Kirsten and I. (It was particularly difficult leaving the hospital without Madeleine.) While we are disappointed by this setback, we're also hopeful that by identifying the obstruction and addressing the situation, Madeleine will be able to breathe slower (she's always breathed faster than the doctors like) and will be able to eat more effectively. Both of these developments would decrease the amount of calories her body is consuming and should help her to gain weight and develop more effectively. In other words, we're hopeful that the short-term pain of postponing our trip to Michigan and admitting her to the hospital enables us to turn another corner in Madeleine's development.
In terms of next steps, Madeleine is going to go through a number of tests tomorrow--- today was spent admitting Madeleine and getting a baseline for how she is performing. There are three specific tests that the doctors want Madeleine to undergo:
1) Swallow test (aka MBS): This test is conducted by a speech therapist. The therapist will feed Madleeine barium and will watch to see how Madeleine is swallowing. At the same time, a machine will follow the barium as it goes down to see if any of it aspirates into the lungs.
2) Milk Scan: In this test, they will mark formula(don't know what they use) and will feed it through her feeding tube. They will watch the milk on a monitor and will see if reflux causes it to move into the esophagus and possibly into her lungs. Additionally, they'll check to see how long the milk remains in her stomach and if anything else fishy is going on.
3) Sleep test: In this test, they will monitor Madeleine to see if any obstructions occur when she is sleeping. (They do this type of a test on adults to determine if they have apnea. I know because I've spent the night in a sleep clinic and I have apnea.) They can also see if there are other factors-- possibly her feeding tube-- that could be causing the obstruction.
With these three tests, the doctors can determine the best course of action. There's no way of knowing right now, but the doctors have hinted that the most likely cause is that small amounts of formula are aspirating into the lungs. If that's the case, the cure could be as simple as putting a thickening agent into her formula. Of course, there are tons of other issues that could be causing problems and we won't know more until the tests are conducted. The best news is that, regardless the cause, the doctors were adamant throughout the day that each problem can be addressed and that this should not be a long term problem. (It could take months to finally resolve but we can resolve.)
So-- the game plan for tomorrow is as follows:
- The milk scan and swallow test are scheduled for tomorrow morning (hopefully). If that happens, we'll have results tomorrow afternoon.
- The sleep scan will take longer to schedule and its possible that we'll take Madeleine home and do the sleep scan on an out patient basis. The scheduling of the sleep scan will largely depend on the results of the first two tests.
- Depending on the results, it is possible that Madeleine will be released as early as Friday morning. If this happens, the doctors have indicated that we're just as capable of addressing Madeleine's medical needs in Michigan as we are in DC and Madeleine could make her MidWest debut as early as Sunday afternoon. That being said, we may not get released that early and Madeleine could be in the hospital for the better portion of next week.
We hope to know a great deal more about the situation tomorrow afternoon and we'll provide a blog update as we learn this information. Thanks again for everyone's support. Let's just hope this is a minor bump in the road....
Brent and Kirsten
Of course, the best laid plans of men and mice....
We met with the pulmonologist this morning and they downloaded data from the monitor that Madeleine wears. The monitor tracks three things:
- Fast heartrate (tachycardia)
- Slow heartrate (bradycardia)
- Slow breathing (apnea)
We haven't had any alarms for fast heartrate so that wasn't an issue. However, we've had alarms for both apnea and bradycardia. We've spoken with our pediatrician as well as with Madeleine's cardiologist and they weren't overly concerned-- often the machine has false readings and since Madeleine appears to be improving, they weren't too concerned. The pulmonologist had the benefit of downloading the data from the machine and she told us that the apnea episodes logged by the machine were inconsequential and of no concern. However, the bradycardia events demonstrated a great deal of concern. To be clear, Madeleine's heart never went exceedingly low but by looking at the heart output (the squiggly lines), the pulmonologist could see that her breathing dropped significantly prior to the bradycardia events. This was confusing to us at first because the machine didn't show problems with apnea but we learned that there are two types of apnea. In premature infants, "central" apnea is common. This type of apnea occurs when a baby's nervous system is immature and the baby simply forgets to breathe for an extended period of time. Adult apnea-- the kind where you snore really loud-- is considered to be "obstructed" apnea because something blocks the breathing canal and prevents one from breathing. (snoring is just a partially obstructed breathing canal.) Madeleine's machine only monitors central apnea as it is designed to monitor Madeleine's chest movements. In obstructed apnea, the chest continues to move as the body is trying to breathe but is unable due to an obstruction.
I apologize for the lengthy description but I think it helps understand what is going on with Madeleine (at least it helps me to explain it in this manner.) The question that remains is what is causing the obstruction? The immediate concern is that Madeleine is aspirating formula into her lungs, thereby blocking the breathing passage and potentially damaging her lungs. Its unlikely that any major damage has occured to this point but given the potential for further damage, the doctors recommended admitting Madeleine into the hospital today so that further tests can be conducted. In other words-- I'm typing this from my house and Madeleine is back in the hospital.
We're obviously disappointed by this development as we were really looking forward to showing Madeleine off in the Midwest. Furthermore, we felt like we were beyond major medical issues-- at least in the short term-- and today has been rather difficult for Kirsten and I. (It was particularly difficult leaving the hospital without Madeleine.) While we are disappointed by this setback, we're also hopeful that by identifying the obstruction and addressing the situation, Madeleine will be able to breathe slower (she's always breathed faster than the doctors like) and will be able to eat more effectively. Both of these developments would decrease the amount of calories her body is consuming and should help her to gain weight and develop more effectively. In other words, we're hopeful that the short-term pain of postponing our trip to Michigan and admitting her to the hospital enables us to turn another corner in Madeleine's development.
In terms of next steps, Madeleine is going to go through a number of tests tomorrow--- today was spent admitting Madeleine and getting a baseline for how she is performing. There are three specific tests that the doctors want Madeleine to undergo:
1) Swallow test (aka MBS): This test is conducted by a speech therapist. The therapist will feed Madleeine barium and will watch to see how Madeleine is swallowing. At the same time, a machine will follow the barium as it goes down to see if any of it aspirates into the lungs.
2) Milk Scan: In this test, they will mark formula(don't know what they use) and will feed it through her feeding tube. They will watch the milk on a monitor and will see if reflux causes it to move into the esophagus and possibly into her lungs. Additionally, they'll check to see how long the milk remains in her stomach and if anything else fishy is going on.
3) Sleep test: In this test, they will monitor Madeleine to see if any obstructions occur when she is sleeping. (They do this type of a test on adults to determine if they have apnea. I know because I've spent the night in a sleep clinic and I have apnea.) They can also see if there are other factors-- possibly her feeding tube-- that could be causing the obstruction.
With these three tests, the doctors can determine the best course of action. There's no way of knowing right now, but the doctors have hinted that the most likely cause is that small amounts of formula are aspirating into the lungs. If that's the case, the cure could be as simple as putting a thickening agent into her formula. Of course, there are tons of other issues that could be causing problems and we won't know more until the tests are conducted. The best news is that, regardless the cause, the doctors were adamant throughout the day that each problem can be addressed and that this should not be a long term problem. (It could take months to finally resolve but we can resolve.)
So-- the game plan for tomorrow is as follows:
- The milk scan and swallow test are scheduled for tomorrow morning (hopefully). If that happens, we'll have results tomorrow afternoon.
- The sleep scan will take longer to schedule and its possible that we'll take Madeleine home and do the sleep scan on an out patient basis. The scheduling of the sleep scan will largely depend on the results of the first two tests.
- Depending on the results, it is possible that Madeleine will be released as early as Friday morning. If this happens, the doctors have indicated that we're just as capable of addressing Madeleine's medical needs in Michigan as we are in DC and Madeleine could make her MidWest debut as early as Sunday afternoon. That being said, we may not get released that early and Madeleine could be in the hospital for the better portion of next week.
We hope to know a great deal more about the situation tomorrow afternoon and we'll provide a blog update as we learn this information. Thanks again for everyone's support. Let's just hope this is a minor bump in the road....
Brent and Kirsten
Monday, July 14, 2008
A Great Weekend
Sorry for the lack of posts-- we've been busy and I haven't made time to write a blog. Madeleine is sleeping right now and I'm not all that interested in the All Star Game, strangely enough. In any case, I wanted to post a few quick thoughts and provide updates from our weekend. First-- the updates.
We spent the weekend out in West Virginia at our cabin celebrating the ever-famous "John Henry Days." (As an aside, our cabin is located in Talcott, West Virginia and claims to be the "Home of the John Henry legend.") I ran in a four mile race and finished second in the women's category-- didn't do so hot in my own gender but hey-- I'm just getting running again. Madeleine, on the other hand was a rockstar throughout the weekend. The roadtrip didn't seem to bother her much-- she loves the carseat and was great on both trips to and from the cabin. Our neighbors in West Virginia were very excited to meet her-- many of them are frequent blog visitors-- and Madeleine seemed to handle all of the attention quite well. We can't say enough nice things about our neighbors in West Virginia-- they kept an eye on our place for the past four months when we were preoccupied with Madeleine and it was really great to see them and to show off our little girl. Visiting the cabin was really special for Kirsten and I-- we really enjoy getting away from the city but it was a bit far for us to travel when Madeleine was hospitalized. When we opened the door with Madeleine with us, it drove home how far we've come and how lucky we truly are.
In terms of development, Madeleine seems to change appearance every day and she's making many strides health wise. First, she's doing much better with her bottle feeding. We switched to a new bottle this weekend and that seems to have made a big difference. Today, Madeleine took all but one complete feed from the bottle and she took over two-thirds of the only incomplete bottle. We're hoping that this trend continues so that we can consider removing the feeding tube though that's still likely weeks away. Kirsten took Madeleine to the pediatrician on Monday and we were a little disappointed that she hadn't gained any weight since her visit last week. We're a little skeptical as she looks much larger to us and its totally possible that the previous weight was inaccurate. Overall, Madeleine has gained about .5 ounce every day that she's been home-- not quite the weight gain that we're hoping for but it is trending in the right direction and we're hopeful that as she improves with bottle feeding, the weight gain will increase. Madeleine's breathing issues also seem to be resolving themselves as she's had very few episodes as registered by the apnea monitor she wears. We meet with the pulmonologist on Thursday and we'll determine the path moving forward regarding her continued use of breathing support (oxygen) and medicines (nebulizers-- similar to asthma medicine).
In terms of plans for the coming weeks, we're planning to travel to Michigan on Thursday so that the Bushey clan and associated folks have a chance to visit with Madeleine. We'll spend about a week and a half in Michigan and then plan on going back to our cabin for a four day respite before returning to the DC area on August 3rd. (I'm taking a few weeks off work.) A side benefit of Madeleine's stay in the NICU is that she's accustomed to being around a large number of people. This experience will serve her well as there will be plenty of folks interested in seeing Madeleine. If you are in Michigan, please see the updated note to the left. I hope to provide a link to an evite tomorrow so that we can gauge the number of folks able to attend next Thursday.
Before I wrap up, I wanted to highlight one other posting on the left entitled "Running for Madeleine." Kirsten and I were honored/humbled/shocked and a whole bunch of other emotions when two of Madeleine's Physician Assistants-- Rebecca and Lauren-- mentioned that they are running the Chicago Marathon and would like to fundraise in Madeleine's honor. Kirsten and I have been absolutely humbled by the outpouring of support and inspiration that we've witnessed since Madeleine's birth but this offer truly floored us and we'd like to ask that you consider donating to this worthy cause. We know that folks enjoy purchasing clothes and gifts for Madeleine and while they're greatly appreciated, we ask that you consider making a donation to this group in lieu of a gift. I know its not the same as seeing Madeleine in the cute outfit (and trust me, we've gotten some cute outfits as gifts) but its a truly special way that we hope you'll consider giving back. We've already raised a great deal of money via the blog for the March of Dimes' "March for Babies" and we hope that Rebecca and Lauren's "Team Madeleine" will have similar success. Regardless, Kirsten and I can't thank them nearly enough. In addition to this outstanding gesture, these two were steadfast advocates for Madeleine throughout her time in the NICU and they were 100% supportive of Kirsten and I throughout our emotional outbursts and endless questions. Simply put, Lauren and Rebecca are special folks and we can't thank them enough for their work in the NICU as well as for their offer to fundraise.
That's all for now. Thanks again for your support and interest in our daughter.
Kirsten and Brent
We spent the weekend out in West Virginia at our cabin celebrating the ever-famous "John Henry Days." (As an aside, our cabin is located in Talcott, West Virginia and claims to be the "Home of the John Henry legend.") I ran in a four mile race and finished second in the women's category-- didn't do so hot in my own gender but hey-- I'm just getting running again. Madeleine, on the other hand was a rockstar throughout the weekend. The roadtrip didn't seem to bother her much-- she loves the carseat and was great on both trips to and from the cabin. Our neighbors in West Virginia were very excited to meet her-- many of them are frequent blog visitors-- and Madeleine seemed to handle all of the attention quite well. We can't say enough nice things about our neighbors in West Virginia-- they kept an eye on our place for the past four months when we were preoccupied with Madeleine and it was really great to see them and to show off our little girl. Visiting the cabin was really special for Kirsten and I-- we really enjoy getting away from the city but it was a bit far for us to travel when Madeleine was hospitalized. When we opened the door with Madeleine with us, it drove home how far we've come and how lucky we truly are.
In terms of development, Madeleine seems to change appearance every day and she's making many strides health wise. First, she's doing much better with her bottle feeding. We switched to a new bottle this weekend and that seems to have made a big difference. Today, Madeleine took all but one complete feed from the bottle and she took over two-thirds of the only incomplete bottle. We're hoping that this trend continues so that we can consider removing the feeding tube though that's still likely weeks away. Kirsten took Madeleine to the pediatrician on Monday and we were a little disappointed that she hadn't gained any weight since her visit last week. We're a little skeptical as she looks much larger to us and its totally possible that the previous weight was inaccurate. Overall, Madeleine has gained about .5 ounce every day that she's been home-- not quite the weight gain that we're hoping for but it is trending in the right direction and we're hopeful that as she improves with bottle feeding, the weight gain will increase. Madeleine's breathing issues also seem to be resolving themselves as she's had very few episodes as registered by the apnea monitor she wears. We meet with the pulmonologist on Thursday and we'll determine the path moving forward regarding her continued use of breathing support (oxygen) and medicines (nebulizers-- similar to asthma medicine).
In terms of plans for the coming weeks, we're planning to travel to Michigan on Thursday so that the Bushey clan and associated folks have a chance to visit with Madeleine. We'll spend about a week and a half in Michigan and then plan on going back to our cabin for a four day respite before returning to the DC area on August 3rd. (I'm taking a few weeks off work.) A side benefit of Madeleine's stay in the NICU is that she's accustomed to being around a large number of people. This experience will serve her well as there will be plenty of folks interested in seeing Madeleine. If you are in Michigan, please see the updated note to the left. I hope to provide a link to an evite tomorrow so that we can gauge the number of folks able to attend next Thursday.
Before I wrap up, I wanted to highlight one other posting on the left entitled "Running for Madeleine." Kirsten and I were honored/humbled/shocked and a whole bunch of other emotions when two of Madeleine's Physician Assistants-- Rebecca and Lauren-- mentioned that they are running the Chicago Marathon and would like to fundraise in Madeleine's honor. Kirsten and I have been absolutely humbled by the outpouring of support and inspiration that we've witnessed since Madeleine's birth but this offer truly floored us and we'd like to ask that you consider donating to this worthy cause. We know that folks enjoy purchasing clothes and gifts for Madeleine and while they're greatly appreciated, we ask that you consider making a donation to this group in lieu of a gift. I know its not the same as seeing Madeleine in the cute outfit (and trust me, we've gotten some cute outfits as gifts) but its a truly special way that we hope you'll consider giving back. We've already raised a great deal of money via the blog for the March of Dimes' "March for Babies" and we hope that Rebecca and Lauren's "Team Madeleine" will have similar success. Regardless, Kirsten and I can't thank them nearly enough. In addition to this outstanding gesture, these two were steadfast advocates for Madeleine throughout her time in the NICU and they were 100% supportive of Kirsten and I throughout our emotional outbursts and endless questions. Simply put, Lauren and Rebecca are special folks and we can't thank them enough for their work in the NICU as well as for their offer to fundraise.
That's all for now. Thanks again for your support and interest in our daughter.
Kirsten and Brent
Friday, July 11, 2008
Happy John Henry Days
I know that the Fourth was just last weekend but I'm sure everyone has big plans to celebrate John Henry Days this weekend, right? In case you don't know, Kirsten and I own a cabin in Talcott, WV-- Home of the John Henry Legend-- and this is the big weekend. After much debate, we're headed out there tonight for a relaxing weekend. We'll take tons of pictures and I'll post early next week.
As far as updates, there's not much more to post. Madeleine is doing very well-- we'll get a weight update on Monday and then will find out more about her lungs/breathing support next Thursday. We also have a cardiologist appointment on Wednesday. She continues to do well and is slowly improving with bottle feeding. Other than that, Kirsten and I are enjoying the ability to settle into a "normal" routine-- albeit with less sleep and more cords than we first imagined.
That's all-- have a great weekend.
Brent and Kirsten
As far as updates, there's not much more to post. Madeleine is doing very well-- we'll get a weight update on Monday and then will find out more about her lungs/breathing support next Thursday. We also have a cardiologist appointment on Wednesday. She continues to do well and is slowly improving with bottle feeding. Other than that, Kirsten and I are enjoying the ability to settle into a "normal" routine-- albeit with less sleep and more cords than we first imagined.
That's all-- have a great weekend.
Brent and Kirsten
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