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
Wednesday, July 9, 2008
Settling Into a Routine
Kirsten and I are slowly and happily adjusting to life with our 6 pounder at home. I'm working hard to get into work, get stuff done, and get home in a timely fashion. Kirsten is learning how to juggle Madeleine's doctor appointments with feeding, cleaning, and all of the other tasks associated with being a mom with a child at home.
As far as medical benchmarks are concerned, I've laid out the following goals: (as with all goals, these will be adjusted by doctors and will be delayed if Madeleine gets an infection/setback)
1) Gain weight: This is the most important factor as Madeleine has some ground to make up. Our goal is 1 ounce/day.
2) Resolve breathing issues/remove oxygen: The goal is to get rid of all breathing support by the end of August.
3) Bottle Feed: Madeleine does well at times but struggles to finish full bottles due to problems with reflux. In the short term, this may not improve much for two reasons. First, we're not giving her the best drub for reflux (reglan) as it inhibits weight gain. The second problem is that we're practically force feeding Madeleine every three hours with mega-calorie formula. This formula takes longer to process and therefore, Madeleine is going to have some back up issues as we continue to force it into her. Eventually, once gaining weight isn't so important, we'll likely back off and let her body tell us when she's hungry. This should help resolve the reflux. Realizing that this isn't going to happen any time soon, our goal is to get rid of the feeding tube by September 29.
If all goes according to plan, we'll have all of her medical issues resolved by the end of September and will be ready for the final re-attachment surgery in mid-October. All the while, we'll be pushing her to improve her muscle tone as this is a key issue with kids with Downs. Yup, Coach Bushey is already putting Madeleine through daily exercises.
While we're focused on all of the medical issues/challenges Kirsten and I are also just excited to have fun with Madeleine. Its a delicate balance as we want her to grow and develop appropriately and we know that there are certain things we can do to help this development. At the same time, we sometimes just like propping her between us on the couch and playing with her, or letting her sleep on our chest, or letting her sleep in her swing while we sit and watch... You get the picture.
All in all, we're learning to balance life, Madeleine's medical/development challenges while also just having fun being new parents. It can be a struggle at times but its also pretty cool and we couldn't be happier.
That's all-- hope things are going well for you.
Brent
As far as medical benchmarks are concerned, I've laid out the following goals: (as with all goals, these will be adjusted by doctors and will be delayed if Madeleine gets an infection/setback)
1) Gain weight: This is the most important factor as Madeleine has some ground to make up. Our goal is 1 ounce/day.
2) Resolve breathing issues/remove oxygen: The goal is to get rid of all breathing support by the end of August.
3) Bottle Feed: Madeleine does well at times but struggles to finish full bottles due to problems with reflux. In the short term, this may not improve much for two reasons. First, we're not giving her the best drub for reflux (reglan) as it inhibits weight gain. The second problem is that we're practically force feeding Madeleine every three hours with mega-calorie formula. This formula takes longer to process and therefore, Madeleine is going to have some back up issues as we continue to force it into her. Eventually, once gaining weight isn't so important, we'll likely back off and let her body tell us when she's hungry. This should help resolve the reflux. Realizing that this isn't going to happen any time soon, our goal is to get rid of the feeding tube by September 29.
If all goes according to plan, we'll have all of her medical issues resolved by the end of September and will be ready for the final re-attachment surgery in mid-October. All the while, we'll be pushing her to improve her muscle tone as this is a key issue with kids with Downs. Yup, Coach Bushey is already putting Madeleine through daily exercises.
While we're focused on all of the medical issues/challenges Kirsten and I are also just excited to have fun with Madeleine. Its a delicate balance as we want her to grow and develop appropriately and we know that there are certain things we can do to help this development. At the same time, we sometimes just like propping her between us on the couch and playing with her, or letting her sleep on our chest, or letting her sleep in her swing while we sit and watch... You get the picture.
All in all, we're learning to balance life, Madeleine's medical/development challenges while also just having fun being new parents. It can be a struggle at times but its also pretty cool and we couldn't be happier.
That's all-- hope things are going well for you.
Brent
Monday, July 7, 2008
6 lbs 1 oz
That's right. After much consternation, Madeleine finally cracked the 6 lb level today. Kirsten talked with the doctor and our goal right now is to see one ounce gained every day. Kirsten goes back next Monday, so our target weight is 6 lbs 8 oz. If we can average the ounce/day, Madeleine's surgery to reattach the intestines will occur in early October.
The only other bit of news is that there a few new pictures uploaded on the picasa site: http://picasaweb.google.com/brentbushey. My favorite is the one with the madras hat-- this was on our excursion to the National Arboretum. Have a good one.
Brent
The only other bit of news is that there a few new pictures uploaded on the picasa site: http://picasaweb.google.com/brentbushey. My favorite is the one with the madras hat-- this was on our excursion to the National Arboretum. Have a good one.
Brent
Great Weekend
Kirsten and I had a great weekend hanging out with our daughter. It was fantastic to relax with her without having to drive to the hospital. She continues to grow and amaze us with her alertness and her sheer will to keep moving forward despite her small size and medical challenges. We, in turn, have been amazed by her fun demeanor-- she's a natural at peekaboo-- and we're really enjoying the chance to be full time parents.
We've spent most of out time hanging out at home and learning to adjust to having an infant in the house. Our dogs haven't really figured out what is going on-- they take turns staring at her and smelling her and both are a little more protective-- the mailman has been the victim of a number of outbursts so far. We've taken two excursions and that has gone well. Last Friday we took Madeleine up to Kirsten's parents' boat on the Chesapeake north of Baltimore and Madeleine handled everything really well. We were concerned about pushing her too much but she just handled everything in stride. On Sunday, we took Madeleine to the National Arboretum and toured the grounds. (If you've never been, you're missing out-- it is a great place.) Again, Madeleine handled the movement well and we're hoping to continue to get out of the house on a regular basis as it helps keep us sane.
As far as the medical challenges are concerned, we feel like we're making really good progress. Madeleine continues to be on breathing support but at a very low setting and she isn't having any major episodes. We have a monitor that tracks breathing and heart issues and it hasn't gone off for days. When it did go off the first few days, the episodes were minor-- there are varying degrees according to the beeps-- and we're feeling really good about her progress. We visit with the pulmonologist next week on the 17th and we'll find out what the long-term plan is for breathing support. We're thinking that we'll keep the support going for the next few months but hopefully no longer than that. Its not a major issue-- just more of a convenience factor.
The one area that we're a little concerned about is feeding as Madeleine is struggling with some pretty bad reflux, aka baby heartburn. The biggest problem is that the best drug for reflux is Reglan, a drug that increases motility. Unfortunately, the doctors don't want to increase motility as they want food to move as slowly as possible through the gut, thereby enabling her to gain weight as fast as possible. Since she's dealing with reflux at nearly every feeding, bottle feeding isn't going so great. At this point, its not a major issue as we can feed her through her tube but we eventually want to remove the tube. Kirsten is meeting with our pediatrician today and is going to discuss possible solutions. We don't think its a long term problem-- just a short term pain to resolve.
Madeleine's getting weighed today and we're hoping that she cracks the 6 pound limit. Kirsten's also taking her to see the surgeon today and we'll discuss the plan for surgery. We're currently expecting to schedule the surgery once she weighs twelve pounds so we likely have a while until that happens.
Other than that, we're just going to try and enjoy our little girl and watch her grow. I'll post pictures this evening and will keep everyone informed of any progress. Thanks,
Brent
We've spent most of out time hanging out at home and learning to adjust to having an infant in the house. Our dogs haven't really figured out what is going on-- they take turns staring at her and smelling her and both are a little more protective-- the mailman has been the victim of a number of outbursts so far. We've taken two excursions and that has gone well. Last Friday we took Madeleine up to Kirsten's parents' boat on the Chesapeake north of Baltimore and Madeleine handled everything really well. We were concerned about pushing her too much but she just handled everything in stride. On Sunday, we took Madeleine to the National Arboretum and toured the grounds. (If you've never been, you're missing out-- it is a great place.) Again, Madeleine handled the movement well and we're hoping to continue to get out of the house on a regular basis as it helps keep us sane.
As far as the medical challenges are concerned, we feel like we're making really good progress. Madeleine continues to be on breathing support but at a very low setting and she isn't having any major episodes. We have a monitor that tracks breathing and heart issues and it hasn't gone off for days. When it did go off the first few days, the episodes were minor-- there are varying degrees according to the beeps-- and we're feeling really good about her progress. We visit with the pulmonologist next week on the 17th and we'll find out what the long-term plan is for breathing support. We're thinking that we'll keep the support going for the next few months but hopefully no longer than that. Its not a major issue-- just more of a convenience factor.
The one area that we're a little concerned about is feeding as Madeleine is struggling with some pretty bad reflux, aka baby heartburn. The biggest problem is that the best drug for reflux is Reglan, a drug that increases motility. Unfortunately, the doctors don't want to increase motility as they want food to move as slowly as possible through the gut, thereby enabling her to gain weight as fast as possible. Since she's dealing with reflux at nearly every feeding, bottle feeding isn't going so great. At this point, its not a major issue as we can feed her through her tube but we eventually want to remove the tube. Kirsten is meeting with our pediatrician today and is going to discuss possible solutions. We don't think its a long term problem-- just a short term pain to resolve.
Madeleine's getting weighed today and we're hoping that she cracks the 6 pound limit. Kirsten's also taking her to see the surgeon today and we'll discuss the plan for surgery. We're currently expecting to schedule the surgery once she weighs twelve pounds so we likely have a while until that happens.
Other than that, we're just going to try and enjoy our little girl and watch her grow. I'll post pictures this evening and will keep everyone informed of any progress. Thanks,
Brent
Thursday, July 3, 2008
New Pictures
Check out the new pics in the slideshow above. You can also see the larger pictures at http://picasaweb.google.com/brentbushey.
We took Madeleine to her first visit at the pediatrician today. The meeting was essentially designed to introduce the two of them and allowed the doctor to set a baseline. Madeleine weighed in at 5 lbs 12 oz. (we're back to the English system-- only hospitals use metric.) Kirsten will take Madeleine back on Monday so that we can track her weight gain. Ideally, we'll see a steady weight gain over the next few months so that we can schedule her re-attachment surgery. The other breakthrough is that the Doctor agreed that we can cut back on night feeding so long as we don't subtract from the daily amount of food needed. Madeleine is supposed to take 400 cc's/day-- at 8 feeds of 50cc's. We'll increase her day time feeds about 5 cc's and that should allow us to skip the 3am feeds. (This all assumes that Madeleine doesn't wake up at 3AM). It will be really great if we can feed her at midnight and then sleep until 6am-- cross your fingers that we're able to do this.
That's all-- have a good day and enjoy the pictures. We'll continue to post as we take more pictures.
We took Madeleine to her first visit at the pediatrician today. The meeting was essentially designed to introduce the two of them and allowed the doctor to set a baseline. Madeleine weighed in at 5 lbs 12 oz. (we're back to the English system-- only hospitals use metric.) Kirsten will take Madeleine back on Monday so that we can track her weight gain. Ideally, we'll see a steady weight gain over the next few months so that we can schedule her re-attachment surgery. The other breakthrough is that the Doctor agreed that we can cut back on night feeding so long as we don't subtract from the daily amount of food needed. Madeleine is supposed to take 400 cc's/day-- at 8 feeds of 50cc's. We'll increase her day time feeds about 5 cc's and that should allow us to skip the 3am feeds. (This all assumes that Madeleine doesn't wake up at 3AM). It will be really great if we can feed her at midnight and then sleep until 6am-- cross your fingers that we're able to do this.
That's all-- have a good day and enjoy the pictures. We'll continue to post as we take more pictures.
A Really Good Night
There is an upside to having a kid in the NICU for four months: When she comes home, she sleeps through the night! Of course, the downside is that you have to wake the child up every three hours to feed them. I'm sure there are dumber things than waking a sleeping baby in the middle of the night, I just can't think of an example right now.
Regardless, Madeleine has been an absolute gem since getting her home yesterday afternoon. The dogs haven't quite figured her out yet or her them but we figure they'll all reach an understanding fairly soon. Madeleine is a big fan of her swing-- we'll never let the batteries run down-- and my first dream came true last night-- Madeleine and I hung out in the hammock in the backyard for about an hour.
We're headed to meet with Madeleine's pediatrician this morning. The meeting is designed to introduce the two of them and we hope to discuss with the doctor basic timeframes for addressing each of Madeleine's medical issues. First and foremost, we want to discuss how we can avoid waking Madeleine in the middle of the night. We may continue the practice for the next few weeks but hope that in the not too distant future, we'll let Madeleine sleep until she wakes up hungry. We still have follow-up meetings scheduled with cardiologists, pulmonologists, and surgeons as they'll all be tracking Madeleine for the next few months. The pediatrician is the generalist that should help coordinate with all of the different specialists. Again, we look forward to the day when we're only meeting with the pediatrician with infrequent visits scheduled with her cardiologist.
That's about it. I plan on continuing to blog dails-- if for no other reason than to keep a record of all the challenges and triumphs that we experience as full time parents. I hope the news isn't quite as dramatic as it has been the past four months but I'll be certain to keeping everyone informed if such drama does arise. If you find your interest waning, I completely understand and would actually be somewhat pleased-- I'd like my daughter to be a bit more boring than she is right now. :)
Thanks again for your support. Kirsten and I are flying high right now and couldn't have gotten here without you. Take care,
Brent and Kirsten
PS-- Sorry for the lack of pics. We have a few cord issues that I hope to resolve this afternoon. I'll get new pictures posted ASAP-- the pictures currently up on the web don't do Madeleine justice-- she's much larger/alert and better looking than any of the current pictures.
Regardless, Madeleine has been an absolute gem since getting her home yesterday afternoon. The dogs haven't quite figured her out yet or her them but we figure they'll all reach an understanding fairly soon. Madeleine is a big fan of her swing-- we'll never let the batteries run down-- and my first dream came true last night-- Madeleine and I hung out in the hammock in the backyard for about an hour.
We're headed to meet with Madeleine's pediatrician this morning. The meeting is designed to introduce the two of them and we hope to discuss with the doctor basic timeframes for addressing each of Madeleine's medical issues. First and foremost, we want to discuss how we can avoid waking Madeleine in the middle of the night. We may continue the practice for the next few weeks but hope that in the not too distant future, we'll let Madeleine sleep until she wakes up hungry. We still have follow-up meetings scheduled with cardiologists, pulmonologists, and surgeons as they'll all be tracking Madeleine for the next few months. The pediatrician is the generalist that should help coordinate with all of the different specialists. Again, we look forward to the day when we're only meeting with the pediatrician with infrequent visits scheduled with her cardiologist.
That's about it. I plan on continuing to blog dails-- if for no other reason than to keep a record of all the challenges and triumphs that we experience as full time parents. I hope the news isn't quite as dramatic as it has been the past four months but I'll be certain to keeping everyone informed if such drama does arise. If you find your interest waning, I completely understand and would actually be somewhat pleased-- I'd like my daughter to be a bit more boring than she is right now. :)
Thanks again for your support. Kirsten and I are flying high right now and couldn't have gotten here without you. Take care,
Brent and Kirsten
PS-- Sorry for the lack of pics. We have a few cord issues that I hope to resolve this afternoon. I'll get new pictures posted ASAP-- the pictures currently up on the web don't do Madeleine justice-- she's much larger/alert and better looking than any of the current pictures.
Wednesday, July 2, 2008
She's Home!
She's home.
- One day shy of four months.
- Four surgeries later.
- Countless trips and/or phone calls to the NICU
- Hours/Days/Weeks of worrying
And you know what-- the last 3 hours have been so great that I'd say its all been worth it. Before I go into the medical details that we're facing and all of the other things swirling through my head, let me get one thing out:
THANK YOU!
That first thank you is to all of the medical professionals that have selflessly helped our daughter survive these first four months and have positioned her to do so well. We've been floored-- absolutely floored-- by the medical care that Madeleine has received. The nurses, nurse practitioners, physician assistants, physicians, respiratory therapists, surgeons-- in short all of the medical personnel have been absolutel amazing and our gratitude simply can't be expressed.
Here's a second one: THANK YOU
That ones for all of the friends, family members, and the ridiculous support network of folks that have called, written, donated, cooked, prayed, and done god knows what else in support of Kirsten and I. Months ago, after we were once again shocked by someone's kindness, Kirsten turned to me and said "How do we know such good people? I don't think we're half this nice." She said it jokingly but the sentiment rang true: we've been constantly humbled by everyone's outpouring of support and we simply don't know what to say other than, thank you.
Okay, with that out of the way, I'll get to the part of the blog that frequent readers have come to knw all too well-- the medical updates. First off, the best piece of news is that Madeleine looks like a normal baby. That may sound weird but after all of the surgeries, wires, and breathing support that Madeleine has been through, its strange for Kirsten and I to think of her as a baby first, not a medical patient. That being said, she's a baby with a few medical issues that we hope to resolve in the coming months. Here's the list:
- Breathing: Madeleine is receiving a small amount of oxygen support-- about 1/2 liter of 100% oxygen. We're not sure how long she'll need the support but we have a meeting with a pulmonologist on July 17th where we'll assess her continued need for breathing assistance. When we're home, Madeleine breathes with the support of a condenser that pulls oxygen from the air. When we want to leave the house, we have oxygen tanks that we can take with us.
- Feeding: During the daytime, Madeleine is taking most of her food via bottle with some exceptions. At nighttime, Madeleine doesn't usually wake up so we use the feeding tube to ensure that she gets enough food to continue growing. We're not sure how long we'll continue with this arrangement but we'll work with our pediatrician to determine a feeding plan. We hope that within a month, we'll be able to feed Madeleine when she wants to feed-- rather than on the militaristic feeding of every three hours. Ideally, she'll get to the point where she eats enough during the day where we won't need to wake her up at night with supplemental feeds.
- Future surgery: We'll meet monthly with a GI surgeon and will track Madeleine's weight gain. Our goal is to get Madeleine to 5 kgs (12 lbs) before the surgery. We've been told this may take up to 5 months to happen.
- Medicines: Madeleine is still taking a diuretic once daily to help with fluid issues related to her heart/lungs. She's also taking two nebulizers to help her breathing and one medicine to limit problems with reflux.
Taken together, Madeleine still faces a number of medical challenges but we think the worst is behind us and we're hoping that we're able to resolve most of the issues in the next few months. That's pretty much all we have to update right now. I'll get some pictures up in the next few days-- we've been really negligent about posting. In the meantime, just trust me that my daughter looks great-- the nurses loved the polka dot dress that we chose to bring her home in-- and know that Kirsten and I are absolutely ecstatic about the opportunity to have our daughter home.
Thanks again,
Brent and Kirsten
- One day shy of four months.
- Four surgeries later.
- Countless trips and/or phone calls to the NICU
- Hours/Days/Weeks of worrying
And you know what-- the last 3 hours have been so great that I'd say its all been worth it. Before I go into the medical details that we're facing and all of the other things swirling through my head, let me get one thing out:
THANK YOU!
That first thank you is to all of the medical professionals that have selflessly helped our daughter survive these first four months and have positioned her to do so well. We've been floored-- absolutely floored-- by the medical care that Madeleine has received. The nurses, nurse practitioners, physician assistants, physicians, respiratory therapists, surgeons-- in short all of the medical personnel have been absolutel amazing and our gratitude simply can't be expressed.
Here's a second one: THANK YOU
That ones for all of the friends, family members, and the ridiculous support network of folks that have called, written, donated, cooked, prayed, and done god knows what else in support of Kirsten and I. Months ago, after we were once again shocked by someone's kindness, Kirsten turned to me and said "How do we know such good people? I don't think we're half this nice." She said it jokingly but the sentiment rang true: we've been constantly humbled by everyone's outpouring of support and we simply don't know what to say other than, thank you.
Okay, with that out of the way, I'll get to the part of the blog that frequent readers have come to knw all too well-- the medical updates. First off, the best piece of news is that Madeleine looks like a normal baby. That may sound weird but after all of the surgeries, wires, and breathing support that Madeleine has been through, its strange for Kirsten and I to think of her as a baby first, not a medical patient. That being said, she's a baby with a few medical issues that we hope to resolve in the coming months. Here's the list:
- Breathing: Madeleine is receiving a small amount of oxygen support-- about 1/2 liter of 100% oxygen. We're not sure how long she'll need the support but we have a meeting with a pulmonologist on July 17th where we'll assess her continued need for breathing assistance. When we're home, Madeleine breathes with the support of a condenser that pulls oxygen from the air. When we want to leave the house, we have oxygen tanks that we can take with us.
- Feeding: During the daytime, Madeleine is taking most of her food via bottle with some exceptions. At nighttime, Madeleine doesn't usually wake up so we use the feeding tube to ensure that she gets enough food to continue growing. We're not sure how long we'll continue with this arrangement but we'll work with our pediatrician to determine a feeding plan. We hope that within a month, we'll be able to feed Madeleine when she wants to feed-- rather than on the militaristic feeding of every three hours. Ideally, she'll get to the point where she eats enough during the day where we won't need to wake her up at night with supplemental feeds.
- Future surgery: We'll meet monthly with a GI surgeon and will track Madeleine's weight gain. Our goal is to get Madeleine to 5 kgs (12 lbs) before the surgery. We've been told this may take up to 5 months to happen.
- Medicines: Madeleine is still taking a diuretic once daily to help with fluid issues related to her heart/lungs. She's also taking two nebulizers to help her breathing and one medicine to limit problems with reflux.
Taken together, Madeleine still faces a number of medical challenges but we think the worst is behind us and we're hoping that we're able to resolve most of the issues in the next few months. That's pretty much all we have to update right now. I'll get some pictures up in the next few days-- we've been really negligent about posting. In the meantime, just trust me that my daughter looks great-- the nurses loved the polka dot dress that we chose to bring her home in-- and know that Kirsten and I are absolutely ecstatic about the opportunity to have our daughter home.
Thanks again,
Brent and Kirsten
Tuesday, July 1, 2008
Still on Target
I typed this post yesterday but I guess it didn't go up correctly.
Remember the guy at the end of the first Star Wars movie that just keeps saying "Stay on target" to Luke Skywalker? That's how I feel today. There's not much going on except monitoring her feeding, breathing, and getting us ready to go home. Medical supplies should be delivered to the house today and Kirsten is picking up all of her medical supplies. Our neighbor and friend Julia is going to the hospital with Kirsten. Julia is a former ICU nurse and has graciously offered to be on call in case we need any help-- the only downside to bringing Madeleine home on a holiday weekend is the lack of home nursing for support. (Our other neighborhood nurse friend Becky is out of town this week as she was married this past weekend to some guy named Steve.)
In any case, we're meeting with Madeleine's pediatrician on Thursday for the first time and we'll discuss the following issues:
1) How long should we expect Madeleine to need oxygen/breathing support? We know its unlikely we'll get a concrete answer but it always helps to have a target date.
2) Feeding plan: We'll discuss how we should approach daytime and nighttime feeds with Madeleine.
3) Plan for stoma/reattachment surgery: The target weight is 5 kilos (about 12 lbs). We want to establishe target weight gain goals so that we can track Madeleine's progress.
4) Medicines: Madeleine is coming home on Prevasid (for reflux), Laseks replacement (diuretic-- can't remember the specific name), and two different nebulizers for breathing support. We want to determine how long they want Madeleine to continue taking this medicine.
That's pretty much it. As you can probably tell, we're extremely excited about the chance to bring Madeleine home. We know there will be many difficult days/hours in the coming weeks but we're definitely looking forward to being Madeleine's primary care givers-- its the piece of parenting that we've been missing. We know that we have one more surgery/stay in the hospital ahead of us but when we compare that with what we've been through, we're hopeful that's just one small bump in an increasingly smoother ride.
Thanks again for everyone's support. Its going to be an exciting day tomorrow.
Brent and Kirsten
Remember the guy at the end of the first Star Wars movie that just keeps saying "Stay on target" to Luke Skywalker? That's how I feel today. There's not much going on except monitoring her feeding, breathing, and getting us ready to go home. Medical supplies should be delivered to the house today and Kirsten is picking up all of her medical supplies. Our neighbor and friend Julia is going to the hospital with Kirsten. Julia is a former ICU nurse and has graciously offered to be on call in case we need any help-- the only downside to bringing Madeleine home on a holiday weekend is the lack of home nursing for support. (Our other neighborhood nurse friend Becky is out of town this week as she was married this past weekend to some guy named Steve.)
In any case, we're meeting with Madeleine's pediatrician on Thursday for the first time and we'll discuss the following issues:
1) How long should we expect Madeleine to need oxygen/breathing support? We know its unlikely we'll get a concrete answer but it always helps to have a target date.
2) Feeding plan: We'll discuss how we should approach daytime and nighttime feeds with Madeleine.
3) Plan for stoma/reattachment surgery: The target weight is 5 kilos (about 12 lbs). We want to establishe target weight gain goals so that we can track Madeleine's progress.
4) Medicines: Madeleine is coming home on Prevasid (for reflux), Laseks replacement (diuretic-- can't remember the specific name), and two different nebulizers for breathing support. We want to determine how long they want Madeleine to continue taking this medicine.
That's pretty much it. As you can probably tell, we're extremely excited about the chance to bring Madeleine home. We know there will be many difficult days/hours in the coming weeks but we're definitely looking forward to being Madeleine's primary care givers-- its the piece of parenting that we've been missing. We know that we have one more surgery/stay in the hospital ahead of us but when we compare that with what we've been through, we're hopeful that's just one small bump in an increasingly smoother ride.
Thanks again for everyone's support. Its going to be an exciting day tomorrow.
Brent and Kirsten
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