Madeleine continues to improve and we're hopeful that she will be released tomorrow. The pneumonia is close to being resolved and after a week's worth of tests and discussions with doctors, we've settled on the following course of action:
1) The doctors inserted a nasal "J" tube yesterday afternoon. The tube itself is exactly the same as her previous feeding tube but the major difference is that this tube extends through her stomach into her small intestines. We're going to feed Madeleine on a continuous feeding schedule for 16 hours every day and then will bottle feed her with thickened formual up to three times/day. By taking this approach, we hope to eliminate any reflux by bypassing the stomach and by thickening any bottle fed food, we decrease the risk of her aspirating when swallowing. By taking this approach, we hope that Madeleine will put on weight quickly and we believe that this growth will help her body deal with regular feedings once we switch back in a few months.
2) We are going home with a Pulse oximeter (more commonly referred to as a Pulsox.) The pulsox monitors blood saturation levels and is a good indicator of the relative efficiency/effectivness of one's lungs. We don't plan on keeping a monitor on Madeleine all the time-- this would be crazy as it would beep pretty much any time Madeleine moved-- but we will have it so that we can check to see how Madeleine is doing from time-to-time. Most importantly, when we are concerned with her health, Kirsten and I won't stand looking at Madeleine discussing how we think her coloring is and trying to determine if something is wrong. In short: this should help us monitor Madeleine's health and identify any potential problems early on.
Those are the major changes. We're going to work closely with Madeleiene's team of doctors and we're hoping that these changes will allow Madeleine to grow and avoid future pneumonia episodes. We're going to be home this weekend recuperating and we'll try to take pictures and post them. Take care,
Brent and Kirsten
Thursday, August 28, 2008
Tuesday, August 26, 2008
Slow Improvement
Madeleine spent the weekend in the PICU at Children's Hospital and is recovering well from her most recent bout with pneumonia. Given her progress, she was transferred Sunday night from the ICU to the general floor as she completes her recovery.
While we're very pleased with her recovery from pneumonia, we're focused on preventing future problems. There are four factors that play into Madeleine's pneumonia and past hospitalizations:
1) Pulmonary: As with all premature babies, Madeleine's lungs show some signs of prematurity making her more susceptible to infections, primarily pneumonia.
2) Cardiology: While Madeleine has had her major heart surgery, some doctors have expressed concern that her heart isn't performing at 100% and is potentially creating a fluid imbalance in her lungs. This is unlikely but until we rule it out, it is another potential reason for why she has had recurrent pneumonia.
3) GI issues: This is the most likely culprit (or the primary culprit) for the recurrent pneumonia as we believe that Madeleine's pneumonia is linked to micro-aspirations of fluid into her lungs. During Madeleine's previous stay in the hospital, the doctors conducted a swallow test and milk scan to determine if Madeleine was aspirating. The swallow test checks to see if any formula aspirates on the way down the esophagus whereas the milk scan looks to see if the food is refluxed back up from the stomach. Both tests were somewhat inconclusive as they showed potential for aspiration but didn't confirm it.
4) Down syndrome: This is the hardest factor to assess but it likely plays into Madeleine's health issues. Kids with Down syndrome usually get more than their fair share of respiratory infections and the cause isn't entirely clear. In the end, its possible that Madeleine's ability to fight infections is somewhat compromised and we just need to keep this in mind whenever she displays signs of an infection.
Taking all of these factors into account is a complicated business and we're working diligently with our team of doctors to ensure that we consider all aspects in treating and preventing future bouts with pneumonia. During Madeleine's previous two visits to the hospital, she was admitted to the respiratory/pulmonary floor but when she was transferred out of the ICU this time, she was moved to the gernal medicine floor. We were very pleased with this decision as the doctors have taken a much more wholistic approach in treating her pneumonia. To be certain, they're focused on resolving the acute pneumonia issues but they're spending a great deal of time on all of the four factors listed above and we feel much more confident in our ability to address the larger medical issues facing Madeleine in the future.
We don't have a final plan for future care but we've discused making the following changes:
1) Inserting a nasal "J" (NJ) tube. Madeleine currently has a nasal "G" (NG) tube that we use to put formula directly into her stomach. The NJ tube is the same type of tube and is also inserted through her nose but the tube extends past the stomach into the top of the small intestines. By using the NJ tube, it should ensure that Madeleine doesn't reflux and aspirate. If her main problem is aspiration caused by reflux (Kirsten and I believe this to be the case) then we would expect to see major improvement in her respirations (slower breathing and more relaxed in general). We'd also expect to see fairly aggressive weight gain and in theory as Madeleine grows, the valve that separates the stomach from the espophagus should strengthen thereby decreasing reflux in the future.
2) Thickened "PO" feeds: The doctors would still like us to do some feedings by mouth (PO) but given the concern over Madeleine aspirating formula when she swallows, we will need to thicken the formula with rice cereal. We tried this once before and Madeleine wasn't a huge fan. That being said, we didn't work at it too hard and given the importance of avoiding pneumonia, we're open to trying again.
These two changes are the major options that we are considering at this time. The doctors do have a number of other tests scheduled before we're released but these are primarily aimed at ruling out any other potential causes of aspiration and/or susceptibility for infection and we're not expecting any new findings. (We'll see how that statement is revised in the coming days.)
If all goes according to plan, we think we'll be released from the hospital on Wednesday or Thursday at the latest. I'll provide further updates in the next few days as we finalize the changes in Madeleine's care. Thanks again for everyone's support.
Brent
While we're very pleased with her recovery from pneumonia, we're focused on preventing future problems. There are four factors that play into Madeleine's pneumonia and past hospitalizations:
1) Pulmonary: As with all premature babies, Madeleine's lungs show some signs of prematurity making her more susceptible to infections, primarily pneumonia.
2) Cardiology: While Madeleine has had her major heart surgery, some doctors have expressed concern that her heart isn't performing at 100% and is potentially creating a fluid imbalance in her lungs. This is unlikely but until we rule it out, it is another potential reason for why she has had recurrent pneumonia.
3) GI issues: This is the most likely culprit (or the primary culprit) for the recurrent pneumonia as we believe that Madeleine's pneumonia is linked to micro-aspirations of fluid into her lungs. During Madeleine's previous stay in the hospital, the doctors conducted a swallow test and milk scan to determine if Madeleine was aspirating. The swallow test checks to see if any formula aspirates on the way down the esophagus whereas the milk scan looks to see if the food is refluxed back up from the stomach. Both tests were somewhat inconclusive as they showed potential for aspiration but didn't confirm it.
4) Down syndrome: This is the hardest factor to assess but it likely plays into Madeleine's health issues. Kids with Down syndrome usually get more than their fair share of respiratory infections and the cause isn't entirely clear. In the end, its possible that Madeleine's ability to fight infections is somewhat compromised and we just need to keep this in mind whenever she displays signs of an infection.
Taking all of these factors into account is a complicated business and we're working diligently with our team of doctors to ensure that we consider all aspects in treating and preventing future bouts with pneumonia. During Madeleine's previous two visits to the hospital, she was admitted to the respiratory/pulmonary floor but when she was transferred out of the ICU this time, she was moved to the gernal medicine floor. We were very pleased with this decision as the doctors have taken a much more wholistic approach in treating her pneumonia. To be certain, they're focused on resolving the acute pneumonia issues but they're spending a great deal of time on all of the four factors listed above and we feel much more confident in our ability to address the larger medical issues facing Madeleine in the future.
We don't have a final plan for future care but we've discused making the following changes:
1) Inserting a nasal "J" (NJ) tube. Madeleine currently has a nasal "G" (NG) tube that we use to put formula directly into her stomach. The NJ tube is the same type of tube and is also inserted through her nose but the tube extends past the stomach into the top of the small intestines. By using the NJ tube, it should ensure that Madeleine doesn't reflux and aspirate. If her main problem is aspiration caused by reflux (Kirsten and I believe this to be the case) then we would expect to see major improvement in her respirations (slower breathing and more relaxed in general). We'd also expect to see fairly aggressive weight gain and in theory as Madeleine grows, the valve that separates the stomach from the espophagus should strengthen thereby decreasing reflux in the future.
2) Thickened "PO" feeds: The doctors would still like us to do some feedings by mouth (PO) but given the concern over Madeleine aspirating formula when she swallows, we will need to thicken the formula with rice cereal. We tried this once before and Madeleine wasn't a huge fan. That being said, we didn't work at it too hard and given the importance of avoiding pneumonia, we're open to trying again.
These two changes are the major options that we are considering at this time. The doctors do have a number of other tests scheduled before we're released but these are primarily aimed at ruling out any other potential causes of aspiration and/or susceptibility for infection and we're not expecting any new findings. (We'll see how that statement is revised in the coming days.)
If all goes according to plan, we think we'll be released from the hospital on Wednesday or Thursday at the latest. I'll provide further updates in the next few days as we finalize the changes in Madeleine's care. Thanks again for everyone's support.
Brent
Friday, August 22, 2008
Another Bump In the Road
In my last message I admitted that Kirsten and I were probably setting ourselves for a fall from grace and unfortunately, my fears were confirmed today. Madeleine is being admitted to the hospital today with pneumonia, again. The assumption is that she refluxed and aspirated fluid into her lungs setting her up for infection. This hasn't been confirmed but that's what the doctors suspect. We went to the ER this morning as Madeleine was dependent on higher levels of oxygen and her coloring was very poor. Additionally, she refused to feed from a bottle and was very irritated all day yesterday-- suprisingly, she does not have a fever.
In any case, we don't think the infection is too bad-- probably similar to her last bout with pneumonia and our concern is more on why now. One possible explanation is that Madeleiene out grew her doses for the medicine treating her reflux. Kirsten spoke yesterday with our pediatrician and they increased the amount of Prevasid she gets on a daily basis. Its possible that this change alone will make the difference once the infection is under control. Still, we're going to meet with a GI specialist as well as a cardiologist and pulmonoligist to determine if we need to consider other alternatives to help resolve her reflux. If we don't make any major changes right now, at the very least, we hope to lay out various alternatives in the event that Madeleine continues to struggle with reflux in the future.
In any case, we're obviously disappointed and frustrated right now as we were fairly confident that we'd put the hospital in the rear view mirror for a while. We don't know how long we're going to be in the hospital but think its likely we'll be in through the weekend (getting sick on a Friday is a really bad way to start the weekend) and will probably be released early next week after all of the specialists have a had a chance to examine her and weigh in with their opinions.
That's all for now. I'll try to keep the blog posted though I'll have limited access as I'm likely going to spend the night at the hospital with Madeleine. Thanks again for everyone's support.
Brent
In any case, we don't think the infection is too bad-- probably similar to her last bout with pneumonia and our concern is more on why now. One possible explanation is that Madeleiene out grew her doses for the medicine treating her reflux. Kirsten spoke yesterday with our pediatrician and they increased the amount of Prevasid she gets on a daily basis. Its possible that this change alone will make the difference once the infection is under control. Still, we're going to meet with a GI specialist as well as a cardiologist and pulmonoligist to determine if we need to consider other alternatives to help resolve her reflux. If we don't make any major changes right now, at the very least, we hope to lay out various alternatives in the event that Madeleine continues to struggle with reflux in the future.
In any case, we're obviously disappointed and frustrated right now as we were fairly confident that we'd put the hospital in the rear view mirror for a while. We don't know how long we're going to be in the hospital but think its likely we'll be in through the weekend (getting sick on a Friday is a really bad way to start the weekend) and will probably be released early next week after all of the specialists have a had a chance to examine her and weigh in with their opinions.
That's all for now. I'll try to keep the blog posted though I'll have limited access as I'm likely going to spend the night at the hospital with Madeleine. Thanks again for everyone's support.
Brent
Tuesday, August 19, 2008
7 lbs 11.5 oz!
That's right-- Madeleine gained over 1 oz/day over the past 5 days. Yes-- we're excited and probably running the risk of basing too much on one weigh-in. Still, we're confident that the new feeding routine is working and we think Madeleine is on the fast track for gaining weight (don't we all wish this was a good thing!).
That's all for now. Enjoy the new August pictures-- we need to take more.
Brent
That's all for now. Enjoy the new August pictures-- we need to take more.
Brent
Great Weekend
Madeleine just continues to chug along. I'm really delinquent on posting pictures and will do my best to get new pictures up today/tonight. Additionally, we're hoping that home nursing comes today as we're expecting a pretty major weight gain. Madeleine weighed 7lbs 6 oz last Thursday and we're hoping that she comes close to the goal of 1 oz/day gained. If that's the case, she should weigh in around 7lbs 11oz today.
With the new feeding approach, Madeleine continues to sleep well and she's pretty much in a happy disposition most of the day (except when she gets hungry). She's smiling a lot more, she's perfected the art of sucking her thumb (we have some good pictures), and she's really improving her head control-- she can lift her entire head up when we place her on her belly. These things aren't all that impressive to most-- I know they wouldn't have meant much to me prior to becoming a dad-- but they're major developmental milestones and Kirsten and I are ecstatic with Madeleine's progress. Whenever she clears one "hurdle" we go running for the camera so that we have a record of her progress.
That's all on our end. We don't have any plans set for the weekend-- we'd love to go out to our cabin in West Virginia but we're a little leery of making any major changes with Madeleine as we're really enjoying her progress right now. I guess there is something to be said for slowing down life every once in a while. :)
Thanks again for everyone's interest and support.
Brent and Kirsten
With the new feeding approach, Madeleine continues to sleep well and she's pretty much in a happy disposition most of the day (except when she gets hungry). She's smiling a lot more, she's perfected the art of sucking her thumb (we have some good pictures), and she's really improving her head control-- she can lift her entire head up when we place her on her belly. These things aren't all that impressive to most-- I know they wouldn't have meant much to me prior to becoming a dad-- but they're major developmental milestones and Kirsten and I are ecstatic with Madeleine's progress. Whenever she clears one "hurdle" we go running for the camera so that we have a record of her progress.
That's all on our end. We don't have any plans set for the weekend-- we'd love to go out to our cabin in West Virginia but we're a little leery of making any major changes with Madeleine as we're really enjoying her progress right now. I guess there is something to be said for slowing down life every once in a while. :)
Thanks again for everyone's interest and support.
Brent and Kirsten
Thursday, August 14, 2008
Still Going Strong
Madeleine has had a really good week. The change in feeding seems to be making a huge difference as her breathing appears to be slowing down and she's also improving at bottle feeding. She actually gets hungry during the day and we've learned that hungry babies are not happy babies. On the flip side, she's still sleeping through the night once we hook her up to the pump. All in all, its just a pretty boring, straightforward week.
Madeleiene's appointments on Monday went great-- the pediatrician and surgeon are both pleased with her progress. The best sign of progress is that we don't have another doctor's appointment until August 28th. That's an eternity for Madeleine. We're hopeful that in the next two weeks, we'll see significant weight gain. At that point, we'll have a better idea of the date for her re-attachment surgery-- we're still a long ways off-- and can also start to think about possible modifications to her care. Our goal remains to be cord free (no oxygen, feeding tube, monitors, etc) by Christmas and we think this is still possible.
In any case, we have more pictures and I'll try to post sometime tonight or over the weekend. Thanks again for everyone's support.
Brent
Madeleiene's appointments on Monday went great-- the pediatrician and surgeon are both pleased with her progress. The best sign of progress is that we don't have another doctor's appointment until August 28th. That's an eternity for Madeleine. We're hopeful that in the next two weeks, we'll see significant weight gain. At that point, we'll have a better idea of the date for her re-attachment surgery-- we're still a long ways off-- and can also start to think about possible modifications to her care. Our goal remains to be cord free (no oxygen, feeding tube, monitors, etc) by Christmas and we think this is still possible.
In any case, we have more pictures and I'll try to post sometime tonight or over the weekend. Thanks again for everyone's support.
Brent
Monday, August 11, 2008
A Very Good Weekend
Sorry for not updating the blog over the weekend. Madeleine was finally released late on Friday night-- we're not sure why it took them so long on Friday. Regardless, we had a very good weekend and we feel like we're making some fairly significant progress with Madeleine. The change in feeding approach has really seemed to help reduce the amount of reflux and associated negative events that have plagued Madeleine since her release from the hospital. By reducing the amount of food that we give her at any one time, she doesn't struggle too much during the day. Additionally, since we're not making her full, she is getting hungry during the day and she's getting much better at bottle feeding-- at most feeds she's taking well over 40cc's-- over double her standard amount prior to the change. One final benefit of this new approach is that when we feed her via the pump, she gets a steady amount of food for 12 hours and she sleeps through most of this period. We do have to get up two times each night to change her and add additional food to the pump (formula can only sit out for four hours, so you have to add extra formula every four hours) but Madeleine generally sleeps right through these different events. If she does wake up, its usually only one eye and she usually has a sleepy/drowsy look that says, "I'm fat and happy right now!"
That's pretty much the update on our homefront right now. Kirsten and Madeleine have appointments today with the pediatrician and the surgeon-- just standard check-ups and we hope that we can continue to report good news. Thanks,
Brent
That's pretty much the update on our homefront right now. Kirsten and Madeleine have appointments today with the pediatrician and the surgeon-- just standard check-ups and we hope that we can continue to report good news. Thanks,
Brent
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