Before getting to Madeleine's updates, Kirsten and I wanted to say a quick thank you to all of the support we received from our last posting. We really are blessed-- not only do we have tremendously supportive friends but our network includes many that have been through similar NICU situations, who are currently NICU nurses, and/or doctors with tremendous insight into Madeleine's issues. Coupled with Kirsten and my background as former Special Education teachers, we know it was no coincidence that a child with special needs and a number of health challenges landed in our lap. If it takes a village to raise a child, our village was specifically designed to raise Madeleine. Thanks for everyone's contributions.
Alright, that's enough sappy talk out of me. Here's the update on Madeleine: The last few days have produced a fair share of drama related to Madeleine's health. On Thursday, Madeleine experienced "dumping" for the first time. As the name connotes, dumping is diagnosed when output into the colostomy bag is larger than 35% of the volume of breastmilk that the baby receives. In other words, if Madeleine is fed 10 cc's every three hours, the doctors and nurses expect to get around 3.5 cc's in the colostomy bag. We were warned that Madeleine would likely struggle with dumping as she approached full feeds and we were pleasantly surprised when she reached full feeds without experiencing any problems. Therefore, the doctors and nurses weren't overly surprised and/or concerned when Madeleine starting having much larger outputs early Thursday morning. When dumping occurs, food travels quickly through the intestines and the larger output results from the bodies inability to absorb nutrients and fluids in an efficient manner. The cause of dumping isn't always clear. Sometimes, dumping can be caused by a virus or GI infection-- the normal term is diarrhea. Other times with an ostomy, dumping can just occur when the GI tract becomes overwhelmed and, lacking an "exit door" to slow things down, the food just dumps out. Regardless of the cause, the immediate concern is dehydration. Madeleine hasn't displayed any problems with dehydration but they hooked up some fluids to her IV and will provide fluids on an as needed basis. Additionally, they backed off on feeding to 20 cc's. The modifications worked well on Thursday as they were able to stop dumping within the first 12 hours.
If that was the only drama involved, Madeleine would be back to full feeds and life would have been much simpler. Of course, simplicity in our life seems to have left with Madeleine's arrival. Early Friday morning, Madeleine began running a fever, started struggling with her breathing, and subsequent blood tests indicated presence of a fairly significant infection. The doctors took the following steps:
- they gave oxygen via nasal canula to stimulate breathing.
- they stopped feeding her breastmilk, providing nutrition through her IV.
- they started a round of general antibiotics
- they gave her tylenol to slow down the fever.
- they gave her a blood transfusion to help her fight infection and distribute oxygen more effectively.
Within 12 hours, Madeleine started looking much better and many of her symptoms were reduced. She stopped running a fever, her color returned (she looked gray on Friday morning), and she began resting much more peacefully. Today, most of her infection numbers are down and the doctors believe that the infection is under control. Once again, they aren't entirely sure where the infection originated. There are two likely sources: her ostomy site and IV as these are the two unnatural ports into her body. At this point, it doesn't make that much difference-- the key is that they get the infection under control allowing her to start feeding and making progress.
In any case, things seem to be going well. We're headed up to the hospital in a bit and I'll try to get more pictures. I'll also try to provide any further medical updates. Right now, we're hopeful that the infection gets under control as the surgeons would still like to operate next Wednesday with the caveat that all signs of infection must be eliminated.
That's all. Thanks again for your support.
Kirsten and Brent
Thursday, May 29, 2008
Wednesday, May 28, 2008
Frustrating progress
Yes-- I typed the title correctly. Before explaining what I mean, I'll be clear: Madeleine is doing great and we're very excited by her surgery scheduled for next week. We just learned that they're increasing her feeds again which is yet another good sign. Right now, there really isn't a negative medical issue facing Madeleine. (Its weird to type that sentence.)
Despite all of the progress, Kirsten and I are both getting a little frustrated/tired/call it what you want with the whole process. We're not unhappy with anything/anyone at Children's and we feel like Madeleine is making tremendous progress. However, seeing how far she's come and seeing how close she is, we're starting to struggle with the following factors:
1) Bottle feeding: this is a short term concern as we know that she'll eventually figure this out. Still, its been a little over a week and we're not seeing much progress. The nurses and doctors are reluctant to push Madeleine too much as their primary goal right now is to see her gain weight and prepare for surgery next week. She can get all of her food via the feeding tube so they're not overly concerned right now with bottle feeding. At the same time, they've indicated all along that Madeleine won't be cleared to come home until she takes all of her food via bottle. Again, we fully expect her to take all of her feeds via bottle but we don't know how long this will take and it is frustrating.
2) We're tired of going to the hospital. Visiting the hospital to see our daughter isn't the way we envisioned being parents and its emotionally draining. We've received tremendous care and have built great relationships with the nurses, doctors, and other advocates at the hospital. Still, we're ready to get her home and start acting like parents.
3) Now that most of Madeleine's major health issues have been/will be addressed, we're starting to focus on the challenges inherent with having a child with Down Syndrome. The more we learn, the more we realize that, for the most part, being a good parent is synonymous with being a good parent for a child with Down's syndrome. At the same time, we'd be lying if we weren't concerned with our daughter's future physical appearance and it is difficult to accept that, to a certain extent, our daughter will have some level of mental retardation. While this is difficult, we're absolutely committed to our daughter's future success and, in many ways, we welcome the challenge of raising a child with special needs. I think right now, its just particularly difficult for us as its finally starting to settle in.
Those are the major factors. After typing them out, I'm hesitant to post as we don't want to be seen as whiinge and/or complaining. If anything, Kirsten and I feel extremely fortunate for all of the blessings we've experienced since Madeleine's birth. My goal in posting this was two-fold: to let you know how we're doing while also trying to sort out the different emotions affecting us. As I said in one of my first blog entries in March, we created this site as a way to provide updates to our supporters while also allowing us to freely express our emotions/concerns/etc. In the long run, we're confident in our ability to address each of the concerns listed above. In the short term, we're frustrated and typing this out helped clarify why.
Thanks-- Have a great day.
Kirsten and Brent
Despite all of the progress, Kirsten and I are both getting a little frustrated/tired/call it what you want with the whole process. We're not unhappy with anything/anyone at Children's and we feel like Madeleine is making tremendous progress. However, seeing how far she's come and seeing how close she is, we're starting to struggle with the following factors:
1) Bottle feeding: this is a short term concern as we know that she'll eventually figure this out. Still, its been a little over a week and we're not seeing much progress. The nurses and doctors are reluctant to push Madeleine too much as their primary goal right now is to see her gain weight and prepare for surgery next week. She can get all of her food via the feeding tube so they're not overly concerned right now with bottle feeding. At the same time, they've indicated all along that Madeleine won't be cleared to come home until she takes all of her food via bottle. Again, we fully expect her to take all of her feeds via bottle but we don't know how long this will take and it is frustrating.
2) We're tired of going to the hospital. Visiting the hospital to see our daughter isn't the way we envisioned being parents and its emotionally draining. We've received tremendous care and have built great relationships with the nurses, doctors, and other advocates at the hospital. Still, we're ready to get her home and start acting like parents.
3) Now that most of Madeleine's major health issues have been/will be addressed, we're starting to focus on the challenges inherent with having a child with Down Syndrome. The more we learn, the more we realize that, for the most part, being a good parent is synonymous with being a good parent for a child with Down's syndrome. At the same time, we'd be lying if we weren't concerned with our daughter's future physical appearance and it is difficult to accept that, to a certain extent, our daughter will have some level of mental retardation. While this is difficult, we're absolutely committed to our daughter's future success and, in many ways, we welcome the challenge of raising a child with special needs. I think right now, its just particularly difficult for us as its finally starting to settle in.
Those are the major factors. After typing them out, I'm hesitant to post as we don't want to be seen as whiinge and/or complaining. If anything, Kirsten and I feel extremely fortunate for all of the blessings we've experienced since Madeleine's birth. My goal in posting this was two-fold: to let you know how we're doing while also trying to sort out the different emotions affecting us. As I said in one of my first blog entries in March, we created this site as a way to provide updates to our supporters while also allowing us to freely express our emotions/concerns/etc. In the long run, we're confident in our ability to address each of the concerns listed above. In the short term, we're frustrated and typing this out helped clarify why.
Thanks-- Have a great day.
Kirsten and Brent
Tuesday, May 27, 2008
Surgery Plans and Continued Progress
Quick update-- Madeleine did very well this weekend but just missed the 2 kilo goal we set for her. As of Sunday night, she weighed 1965 grams (4 lbs 6 oz) but she's doing very well as she's on full feeds. At this point, the only other medicines she is getting is laseks once/day and Zantac to help reduce stomach reflux. Both of these medicines are mixed in with her milk as she is not getting anything intravenously.
With all of this good news in place, we were very pleased to learn today that Madeleine's re-attachment surgery is scheduled for next Wednesday, June 4th. This is expected to be Madeleine's last surgery and we're very excited by the timing. As always, we know that lots of factors can change in the next week but, right now, we're fairly confident that she'll have the final surgery and will be on target for a potential release from the hospital in late June/early July.
That's all-- we hope you enjoyed the Memorial weedend. The weather was great here in DC and Kirsten and I really enjoyed a chance to get outside and relax.
Take care,
Kirsten and Brent
With all of this good news in place, we were very pleased to learn today that Madeleine's re-attachment surgery is scheduled for next Wednesday, June 4th. This is expected to be Madeleine's last surgery and we're very excited by the timing. As always, we know that lots of factors can change in the next week but, right now, we're fairly confident that she'll have the final surgery and will be on target for a potential release from the hospital in late June/early July.
That's all-- we hope you enjoyed the Memorial weedend. The weather was great here in DC and Kirsten and I really enjoyed a chance to get outside and relax.
Take care,
Kirsten and Brent
Friday, May 23, 2008
Same Story
Madeliene continues to do well and is nearing full feeds. By tomorrow afternoon she should reach her full feed potential. She's also slowly improving with bottle feeding-- she took 20cc's of the 28 she's supposed to get this morning. I met with the physical therapist this morning and she's happy with Madeleine's progress. She told us that its going to take a while until she consistently takes all feeds from a bottle so we shouldn't get too frustrated. It helps to hear that from the therapist as part of me expects her to just start bottle feeding all the time.
In any case, that's about all of the changes for right now. Tonight is bath and weigh night so we should have some good pictures and we also hope to report that madeliene has put on more weight. We're aiming to break the 2 kg limit (4lbs 6.5 oz.)
That's all on our front. We'll continue feeding her throughout the weekend and hope to learn more early next week about the potential for surgery. Take care,
Brent
In any case, that's about all of the changes for right now. Tonight is bath and weigh night so we should have some good pictures and we also hope to report that madeliene has put on more weight. We're aiming to break the 2 kg limit (4lbs 6.5 oz.)
That's all on our front. We'll continue feeding her throughout the weekend and hope to learn more early next week about the potential for surgery. Take care,
Brent
Thursday, May 22, 2008
Increased Feeds
The doctors decided yesterday that Madeleine is doing so well that they're increasing feeds by 1 cc ever 6 hours rather than every 12 hours. This means that by Saturday afternoon, she'll reach full feeds of 34cc's every 3 hours. Once this happens, we should be able to report that Madeleine is completely off all medicines and/or other medical support. She'll keep the IV in her arm and will have the regular monitors on her chest and will still have the feeding tube in her nose. However, she'll be processing all of her own food. The news is so good, Kirsten and I are a little scared...
Here's the game plan as it stands right now:
1) Get better at bottle feeding. Coach Dad (that's me) is taking over tomorrow night and I expect to report major progress after the weekend. Yes-- I'm over confident in my abilities but its worked so far, so why stop trying now? Madeleine really likes me right now but her opinion may change after I make her use the bottle for her whole feeds.
2) Surgery: It could happen next week but we're still thinking that the re-attachment surgery will be scheduled for the first week of June. Once Madeleine reaches full feeds, we'll probably ask to talk with the General Surgeons about the proposed course of action. More than likely they'll tell us that they want her to grow for a week on full feeds and then they'll do a contrast study where they insert liquid into the intestines and then take an X-Ray. The fluid shows up really bright in the X-Ray and it allows them to identify any potential problems for surgery. They don't expect to find anything but this is standard procedure before a non-emergency intestinal surgery. We're just excited that she's going to have a surgery that isn't caused by an emergency.
3) Avoiding infection continues to be the most important factor. If we can get through the surgery and recovery period without infection, we'll be well on our way to a speedy recovery.
That's all on the medical front. Thanks again for everyone's support.
Kirsten & Brent
Here's the game plan as it stands right now:
1) Get better at bottle feeding. Coach Dad (that's me) is taking over tomorrow night and I expect to report major progress after the weekend. Yes-- I'm over confident in my abilities but its worked so far, so why stop trying now? Madeleine really likes me right now but her opinion may change after I make her use the bottle for her whole feeds.
2) Surgery: It could happen next week but we're still thinking that the re-attachment surgery will be scheduled for the first week of June. Once Madeleine reaches full feeds, we'll probably ask to talk with the General Surgeons about the proposed course of action. More than likely they'll tell us that they want her to grow for a week on full feeds and then they'll do a contrast study where they insert liquid into the intestines and then take an X-Ray. The fluid shows up really bright in the X-Ray and it allows them to identify any potential problems for surgery. They don't expect to find anything but this is standard procedure before a non-emergency intestinal surgery. We're just excited that she's going to have a surgery that isn't caused by an emergency.
3) Avoiding infection continues to be the most important factor. If we can get through the surgery and recovery period without infection, we'll be well on our way to a speedy recovery.
That's all on the medical front. Thanks again for everyone's support.
Kirsten & Brent
Wednesday, May 21, 2008
Continued Progress and Photos
Okay--
At long last, I've taken some steps to organize all of Madeleine's photos. As you can now see, there are three slide shows on the blog-- one for each month. I'll continue to update the monthly photos. I can't increase the size of the slide shows on the blog but if you want to see the full size photos, you can follow this link: http://picasaweb.google.com/brentbushey. I'll try to add captions when I get some free time at night. (Yeah-- free time.) Also- I've uploaded some of my new favorites along the left side of the blog. Don't worry- if you liked one of the old photos, they're all in one of the three albums (or will be soon). I'll be editing all of the albums and adding new photos as I work to get everything organized. The May photos contain a lot of new pictures-- including pictures of Madeleine without breathing support and feeding from a bottle for the first time. You may be laughing, thinking "what's the big deal?" and I would have totally agreed with you three months ago. Now, I get excited any time I get a different angle to take a picture of Madeleine.
As far as medical updates go, Madeleine is continuing to increase feeds without any signs of trouble. She's feeding from a bottle three times/day and gets the rest of her feeds through the tube in her nose. She isn't taking all of the food from each bottle feeding and whatever is left over gets put down the tube. As she gets better with bottle feeding, they'll increase the frequency of feeds. In terms of other medication, this is the last day for antibiotics and should be near the last day for laseks. By this time next week, our goal is to be rid of all fluids going into Madeleine except for breastmilk. She'll still keep the IV in her arm since they'll need it during surgery but they'll just run a small amount of blood thinner to keep the line from clogging.
In other words, Madeleine is getting to be a pretty boring medical patient and we couldn't be happier. Surgery looks increasingly likely for early June and we expect to know more in a week once she's reached full feeds.
That's all for now-- enjoy the pictures!
Kirsten & Brent
At long last, I've taken some steps to organize all of Madeleine's photos. As you can now see, there are three slide shows on the blog-- one for each month. I'll continue to update the monthly photos. I can't increase the size of the slide shows on the blog but if you want to see the full size photos, you can follow this link: http://picasaweb.google.com/brentbushey. I'll try to add captions when I get some free time at night. (Yeah-- free time.) Also- I've uploaded some of my new favorites along the left side of the blog. Don't worry- if you liked one of the old photos, they're all in one of the three albums (or will be soon). I'll be editing all of the albums and adding new photos as I work to get everything organized. The May photos contain a lot of new pictures-- including pictures of Madeleine without breathing support and feeding from a bottle for the first time. You may be laughing, thinking "what's the big deal?" and I would have totally agreed with you three months ago. Now, I get excited any time I get a different angle to take a picture of Madeleine.
As far as medical updates go, Madeleine is continuing to increase feeds without any signs of trouble. She's feeding from a bottle three times/day and gets the rest of her feeds through the tube in her nose. She isn't taking all of the food from each bottle feeding and whatever is left over gets put down the tube. As she gets better with bottle feeding, they'll increase the frequency of feeds. In terms of other medication, this is the last day for antibiotics and should be near the last day for laseks. By this time next week, our goal is to be rid of all fluids going into Madeleine except for breastmilk. She'll still keep the IV in her arm since they'll need it during surgery but they'll just run a small amount of blood thinner to keep the line from clogging.
In other words, Madeleine is getting to be a pretty boring medical patient and we couldn't be happier. Surgery looks increasingly likely for early June and we expect to know more in a week once she's reached full feeds.
That's all for now-- enjoy the pictures!
Kirsten & Brent
Tuesday, May 20, 2008
Improved Bottle Feeding
Before I get to the good news, I'll just let you know that I left the camera at the hospital today so no pictures until this evening. I may be a Dad but I'm still forgetful Brent. Kirsten's already told me that I can't take Madeleine on the Metro as she's afraid I'll leave her...
As far as medical news is concerned, Madeleine continues to impress. All of the good stuff that was reported yesterday remains the same. Additionally, I met with an occupational therapist this morning and we made a breakthrough on the bottle feeding. It took us a while but we figured out a few things:
1) Madeleine doesn't have a problem with sucking-- if you've seen the video of her with a pacifier, that's not an issue. She just hasn't developed the coordination to suck and swallow together. By watching her, we learned that as she lays on her back, she sucks and then her eyes get real big. This is her way of saying "Dad, I'm drowning here" and we learned to sit her upright so that she could swallow before laying her back down. Over time, she'll get better at doing the two in tandem but for now, that keeps her from swallowing too much.
2) She also struggles to suck constantly as it is tiring. If you watch closely on the video with the pacifier, you'll see that she sucks about 3-5 times and then she takes a break. With a bottle, the sucking is a slower motion and is more tiring so it is reasonable that she wears out quickly. So, to help her out, I gripped the back of her jaw between my thumb and forefinger and slightly pulled her jaw forward. Again, she'll develop the muscles to do this on her own once she's had more practice. However, given the long time where she hasn't fed as well as the low muscle tone associated with Down's syndrome, she just hasn't developed these muscles yet.
With these two modifications, Madeleine was able to eat the full bottle today and she wasn't even tired at the end. The nurses were quite impressed with Madeleine's improvement and they suggested that I get fitted for a "super-dad" t-shirt soon. Madeleine also said that once she comes home, she'd prefer that I feed her during the daytime while reserving the nighttime feeds for mom. :)
In short-- things are going great. We definitely hope things are going this great for others reading the blog. Take care,
Brent and Kirsten
As far as medical news is concerned, Madeleine continues to impress. All of the good stuff that was reported yesterday remains the same. Additionally, I met with an occupational therapist this morning and we made a breakthrough on the bottle feeding. It took us a while but we figured out a few things:
1) Madeleine doesn't have a problem with sucking-- if you've seen the video of her with a pacifier, that's not an issue. She just hasn't developed the coordination to suck and swallow together. By watching her, we learned that as she lays on her back, she sucks and then her eyes get real big. This is her way of saying "Dad, I'm drowning here" and we learned to sit her upright so that she could swallow before laying her back down. Over time, she'll get better at doing the two in tandem but for now, that keeps her from swallowing too much.
2) She also struggles to suck constantly as it is tiring. If you watch closely on the video with the pacifier, you'll see that she sucks about 3-5 times and then she takes a break. With a bottle, the sucking is a slower motion and is more tiring so it is reasonable that she wears out quickly. So, to help her out, I gripped the back of her jaw between my thumb and forefinger and slightly pulled her jaw forward. Again, she'll develop the muscles to do this on her own once she's had more practice. However, given the long time where she hasn't fed as well as the low muscle tone associated with Down's syndrome, she just hasn't developed these muscles yet.
With these two modifications, Madeleine was able to eat the full bottle today and she wasn't even tired at the end. The nurses were quite impressed with Madeleine's improvement and they suggested that I get fitted for a "super-dad" t-shirt soon. Madeleine also said that once she comes home, she'd prefer that I feed her during the daytime while reserving the nighttime feeds for mom. :)
In short-- things are going great. We definitely hope things are going this great for others reading the blog. Take care,
Brent and Kirsten
Monday, May 19, 2008
Continued Progress Over the Weekend
Madeleine's progress continued over the weekend. Here's a list of bullet points:
- She was taken out of the baby warmer last Friday and placed in a crib. Additionally, we installed a mobile on the crib over the weekend. (Note to future parents: EVERYTHING related to children requires batteries. Start saving now. We'll be investing in rechargeable batteries soon.) Many of the nurses are surprised that she's done so well maintaining her own body temperature. Even so, one of the first nurses Madeleine had, stopped by yesterday and said "Let's see, we fixed the heart and now we're suprised that she's doing well? Seems pretty simple to me..."
- Madeleine was weaned completely off breathing support on Friday evening. The nurses expected this to take a lot longer but before weaning her lower than 2 mls, they just took the canula away and Madeleine's been breathing on her own ever since. The heart comment above applies here as well.
- Feeding continues to increase-- Madeleine is now getting 16cc's every 3 hours. At this pace (they're increasing by 1 cc every 12 hours), she'll be at full feeds (33 ccs every 3 hours) at this time next week. The full feed is determined as a calculation of Madeleine's weight. (as she gets bigger, the feeds get bigger.) Madeleine also continues to bottle feed and will be fed via bottle twice/day. She hasn't figured it all out yet-- sometimes she just plays with the bottle but she's slowly getting it. As anyone who knows me or my family, eating is one of the few things that everyone in my family does well.
- Infection: Its pretty much gone. She is still on a round of antibiotics that end on Wednesday but the blood tests show that the infection is resolved.
- Weight: This is the one area where progress isn't entirely clear. Madeleine was weighed last night and was down about 40 grams to 1800 grams (right about 4 lbs.) We were a little surprised by the weight loss but we think it is a combination of her still being on laseks-- a diuretic related to her heart surgery-- and also being out in a crib for the first time. Between losing water weight and burning calories to maintain her own temperature, Madeleine could have lost a few grams. Nevertheless, we're expecting her to start putting on weight (she already looks heavier to Kirsten and I) and we hope to report soon that she's a chubby little baby.
- General cuteness: I'm convinced she gets cuter each day. I took a bunch of pictures and, true to form, I left the camera in the car. Still, take my word for it-- she's ridiculously cute. (She even has dimples-- haven't gotten a picture yet.) I'll post pictures soon.
Here's the game plan for the next 1-2 weeks: (Hint: It's pretty simple.)
1) Wean her off laseks and antibiotics. These should be gone this week.
2) Continue to increase feeds by 1 cc every 12 hours.
3) Continue to bottle feed.
4) Keep Madeleine happy and fatten her up.
5) Figure out when the intestines should be reattached. Right now, here's the timeframe we're hoping for:
- May 26th: Reach full feeds.
- June 2 (week of): Re-attach intestines.
- End of June: Release from the hospital. (the long recovery time is expected as they'll start all over again weaning off breathing support and reintroducing food.)
It is possible that the surgery will be delayed a few weeks longer as the surgeons may not want to rush reattaching the intestines. Still, we think that once she proves that she can tolerate full feeds, there's no real need to wait much longer than early June. (Note: I won't provide the long explanation but it is possible that she won't reach full feeds as easily as we hope. If this is the case, the timeframe could be delayed a week or two. I won't explain further as we don't think this will happen.)
That's all the news we have right now. The typical disclaimers still apply: Infection can change everything in a heartbeat and our timeframes can be delayed significantly. While this is all true, Kirsten and I are increasingly confident in Madeleine's full recovery from all of her ailments and we're really enjoying the ability to just have fun with our daughter (even if we can't bring her home yet.)
Thanks again to everyone for your support.
Brent & Kirsten
- She was taken out of the baby warmer last Friday and placed in a crib. Additionally, we installed a mobile on the crib over the weekend. (Note to future parents: EVERYTHING related to children requires batteries. Start saving now. We'll be investing in rechargeable batteries soon.) Many of the nurses are surprised that she's done so well maintaining her own body temperature. Even so, one of the first nurses Madeleine had, stopped by yesterday and said "Let's see, we fixed the heart and now we're suprised that she's doing well? Seems pretty simple to me..."
- Madeleine was weaned completely off breathing support on Friday evening. The nurses expected this to take a lot longer but before weaning her lower than 2 mls, they just took the canula away and Madeleine's been breathing on her own ever since. The heart comment above applies here as well.
- Feeding continues to increase-- Madeleine is now getting 16cc's every 3 hours. At this pace (they're increasing by 1 cc every 12 hours), she'll be at full feeds (33 ccs every 3 hours) at this time next week. The full feed is determined as a calculation of Madeleine's weight. (as she gets bigger, the feeds get bigger.) Madeleine also continues to bottle feed and will be fed via bottle twice/day. She hasn't figured it all out yet-- sometimes she just plays with the bottle but she's slowly getting it. As anyone who knows me or my family, eating is one of the few things that everyone in my family does well.
- Infection: Its pretty much gone. She is still on a round of antibiotics that end on Wednesday but the blood tests show that the infection is resolved.
- Weight: This is the one area where progress isn't entirely clear. Madeleine was weighed last night and was down about 40 grams to 1800 grams (right about 4 lbs.) We were a little surprised by the weight loss but we think it is a combination of her still being on laseks-- a diuretic related to her heart surgery-- and also being out in a crib for the first time. Between losing water weight and burning calories to maintain her own temperature, Madeleine could have lost a few grams. Nevertheless, we're expecting her to start putting on weight (she already looks heavier to Kirsten and I) and we hope to report soon that she's a chubby little baby.
- General cuteness: I'm convinced she gets cuter each day. I took a bunch of pictures and, true to form, I left the camera in the car. Still, take my word for it-- she's ridiculously cute. (She even has dimples-- haven't gotten a picture yet.) I'll post pictures soon.
Here's the game plan for the next 1-2 weeks: (Hint: It's pretty simple.)
1) Wean her off laseks and antibiotics. These should be gone this week.
2) Continue to increase feeds by 1 cc every 12 hours.
3) Continue to bottle feed.
4) Keep Madeleine happy and fatten her up.
5) Figure out when the intestines should be reattached. Right now, here's the timeframe we're hoping for:
- May 26th: Reach full feeds.
- June 2 (week of): Re-attach intestines.
- End of June: Release from the hospital. (the long recovery time is expected as they'll start all over again weaning off breathing support and reintroducing food.)
It is possible that the surgery will be delayed a few weeks longer as the surgeons may not want to rush reattaching the intestines. Still, we think that once she proves that she can tolerate full feeds, there's no real need to wait much longer than early June. (Note: I won't provide the long explanation but it is possible that she won't reach full feeds as easily as we hope. If this is the case, the timeframe could be delayed a week or two. I won't explain further as we don't think this will happen.)
That's all the news we have right now. The typical disclaimers still apply: Infection can change everything in a heartbeat and our timeframes can be delayed significantly. While this is all true, Kirsten and I are increasingly confident in Madeleine's full recovery from all of her ailments and we're really enjoying the ability to just have fun with our daughter (even if we can't bring her home yet.)
Thanks again to everyone for your support.
Brent & Kirsten
Friday, May 16, 2008
Much Better News
Madeleine's lab work came back this morning and her infection is on the retreat. She's still on antibiotics and her numbers are still elevated, but everything came down significantly since yesterday. Additionally, we had a major milestone last night as Madeleine fed from a bottle for the first time. It was pretty cool to watch-- Kirsten inserted the bottle and Madeleine sucked on it like a pacifier and then paused for a moment with a look like "what the heck, this thing feeds me?" and then she sucked it down and fell immediately to sleep. It was just a small amount and we expect some ups and downs but the plan for now is to practice with the bottle once/day and gradually increase it. In addition to feeding, the cardiac surgeons decided to remove the heart "leads" as they decided that the risk of infection outweighed the very small chance that Madeleine will have heart arrythmia issues. So... to recap, feeding is going great, the infection is going away, and Madeleine has two less things sticking her. All in all, things are going very well. We're hoping for a steady increase of food over the weekend, continued resolution of the infection, slow wean from the nasal canula (down to 2 mls), and not much else.
Have a good one.
Have a good one.
Thursday, May 15, 2008
Video from 5/14
In this clip, Madeleine performs all of her own stunts with the pacifier. She had requested a body double for some of the shots but noone small enough was available. As you can see, she doesn't look like she has an infection despite the tests indicating otherwise...
Confusing Day
Today's been a very weird day for us as Madeleine's body is sending mixed signals. Clinically, Madeleine is doing very well. She continues to eat very well (we're up to 9cc's every three hours) and she is resting well. We spoke with the nurse about an hour ago and the nurse said that she can set her clock by Madeleine's cries as she has learned to expect her food every three hours (this is going to be an issue when she comes home.) The only other times she cries are when her pacifier falls out (she's a pacifier addict) and when one of the IV's starts beeping-- she doesn't like the high pitched noise. Other than that, she's usually sleeping or just looking around.
While all of this is really good news, the lab results from this morning indicate that Madeleine's infection is getting worse as her CRP and white blood counts are all elevated rather significantly. The doctors don't believe that there is an infection related to the heart or the ostomy site and they're a little stymied to pinpoint what is going on. They've sent off cultures and hope that something will grow in the cultures that would provide further evidence. (Don't hold your breath-- its common for nothing to grow in the cultures.) In any case, the assumption right now is that one of Madeleine's lines is infected-- she currently has an IV in her arm and has the two leads going to the heart. The IV has been in longer so that's more than likely the culprit. The doctors haven't pulled the IV as this is providing her nutrition and there isn't an easy substitute if that IV needs to be removed.
In short, we're trying to learn more while also not trying to get too frustrated with the situation. From a medical standpoint, the only change for Madeleine is that she is receiving two anti-biotics to help the infection. Everything else remains the same and our hope is that we'll see the infection drop off in the next few days.
That's all for now. Thanks again for the support.
Brent and Kirsten
While all of this is really good news, the lab results from this morning indicate that Madeleine's infection is getting worse as her CRP and white blood counts are all elevated rather significantly. The doctors don't believe that there is an infection related to the heart or the ostomy site and they're a little stymied to pinpoint what is going on. They've sent off cultures and hope that something will grow in the cultures that would provide further evidence. (Don't hold your breath-- its common for nothing to grow in the cultures.) In any case, the assumption right now is that one of Madeleine's lines is infected-- she currently has an IV in her arm and has the two leads going to the heart. The IV has been in longer so that's more than likely the culprit. The doctors haven't pulled the IV as this is providing her nutrition and there isn't an easy substitute if that IV needs to be removed.
In short, we're trying to learn more while also not trying to get too frustrated with the situation. From a medical standpoint, the only change for Madeleine is that she is receiving two anti-biotics to help the infection. Everything else remains the same and our hope is that we'll see the infection drop off in the next few days.
That's all for now. Thanks again for the support.
Brent and Kirsten
Wednesday, May 14, 2008
Not So Fast
I knew I shouldn't put up a post saying that things should get boring. Kirsten is at the hospital and just called to say that the doctors think Madeleine has a slight infection. There was some concern about an infection last night-- Madeleine had a slight temperature-- so the nurse sent off a blood test (CBC) to see if any numbers were out of whack. Madeleine's numbers came back slightly elevated but she appeared relaxed so there wasn't a huge area of concern. Still, they sent off one more test-- a CRP-- and it also came back elevated, indicating that Madeleine is fighting an infection. With this information, they are going to start Madeleine on 7 days worth of antibiotics. No one seems too excited (not including Dad) about this issue and we're all hoping that it won't affect the overall plan. Unless Madeleine shows further signs of infection, the feeding plan will continue as previously planned and we'll just hope to see her blood work come back clear in a few days.
The best news regarding the infection is that no one believes it is related to the heart as the incision is healing great. Instead, it is much more likely that the ostomy site is responsible for the infection-- that's a common problem with colostomy bags-- and they'll hope that the antibiotics helps resolve it without further complications.
That's all for now... Kirsten and I continue to keep our guard up as it seems whenever we let it down, we run into another issue... have a good one.
Brent
The best news regarding the infection is that no one believes it is related to the heart as the incision is healing great. Instead, it is much more likely that the ostomy site is responsible for the infection-- that's a common problem with colostomy bags-- and they'll hope that the antibiotics helps resolve it without further complications.
That's all for now... Kirsten and I continue to keep our guard up as it seems whenever we let it down, we run into another issue... have a good one.
Brent
"Things Should Slow Down For a Bit"
Sorry for the lack of posts for the past two days-- I've been busy at work and home and haven"t had time to post. The short update is that Madeleine is doing very well-- the quote in the Title of this post was taken from our conversation with the attending NICU doctor. At this point, Madeleine is fairly well recovered from heart surgery and the doctors don't have many immediate goals for her other than the following:
- Finish weaning off breathing support: Madeleine is still on vapo-therm, a high flow nasal canula but is no longer receiving oxygen (only room air) and should continue to wean for the next week or so. They're not weaning any further today (she is on 4 mls of flow) as she shows some signs of being tired and they don't want to push her too far.
- Feeding: Madeleine is currently receiving 6 cc's of breastmilk every 3 hours and this will increase by 1 cc every 12 hours until she reaches full feeds (around 25 cc/feed). She's currently being fed by a tube but she will begin bottle feeding-- starting once/day and increasing as she gets better at it. The doctors like to wait until the nasal canula is reduced to 2 mls before starting the bottle feeding.
- Weight gain: Madeleine weighed 1820 grams (around 4 lbs) last night and the doctors hope to see close to 20g/day gained. This may be a little too aggressive given Madeleine's heart and intestinal issues but that's the goal.
That's it. At some point, we'll begin thinking about the re-attachment surgery but we have a few weeks before they would even begin trying to schedule the surgery. Typically, the surgeons like to wait 6 weeks following the last intestinal surgery but given Madeleine's past struggles, they may wait a bit longer. The six week period falls on June 3, so it is possible that surgery will be scheduled for early to mid-June. Still, at this time, its too early to project with any level of certainty. Our goal to get her home is still July 1 and that looks like it could be possible (give or take a few weeks).
That's all for now. My camera is charged and I plan on taking a bunch of pictures at the hospital tonight. I"ll try to post some new ones ASAP.
Thanks again for the support.
Brent
- Finish weaning off breathing support: Madeleine is still on vapo-therm, a high flow nasal canula but is no longer receiving oxygen (only room air) and should continue to wean for the next week or so. They're not weaning any further today (she is on 4 mls of flow) as she shows some signs of being tired and they don't want to push her too far.
- Feeding: Madeleine is currently receiving 6 cc's of breastmilk every 3 hours and this will increase by 1 cc every 12 hours until she reaches full feeds (around 25 cc/feed). She's currently being fed by a tube but she will begin bottle feeding-- starting once/day and increasing as she gets better at it. The doctors like to wait until the nasal canula is reduced to 2 mls before starting the bottle feeding.
- Weight gain: Madeleine weighed 1820 grams (around 4 lbs) last night and the doctors hope to see close to 20g/day gained. This may be a little too aggressive given Madeleine's heart and intestinal issues but that's the goal.
That's it. At some point, we'll begin thinking about the re-attachment surgery but we have a few weeks before they would even begin trying to schedule the surgery. Typically, the surgeons like to wait 6 weeks following the last intestinal surgery but given Madeleine's past struggles, they may wait a bit longer. The six week period falls on June 3, so it is possible that surgery will be scheduled for early to mid-June. Still, at this time, its too early to project with any level of certainty. Our goal to get her home is still July 1 and that looks like it could be possible (give or take a few weeks).
That's all for now. My camera is charged and I plan on taking a bunch of pictures at the hospital tonight. I"ll try to post some new ones ASAP.
Thanks again for the support.
Brent
Monday, May 12, 2008
A So-So Weekend
First off-- thanks to all that sent Mother's Day wishes to Kirsten. It was a unique Mother's Day as one doesn't expect to have to visit their child in the hospital on Mother's Day. Still, we had a nice day hanging out with Madeleine.
In terms of Madeleine's health progress, this past weekend was largely treading water. We're a little frustrated with the slow progress and I think that Madeleine's quick recovery from surgery led us to believe that she was ready to take off. As we continue to learn in the NICU, progress is a roller coaster and we're sliding just a little bit. Still, there's nothing serious to report-- there's no infection to speak of-- so we're confident that the past few days are a mere speed bump. Here are the specifics:
- Madeleine is still on a relatively high nasal canula setting-- 6 mls and around 40% oxygen. An X-Ray on Saturday revealed that Madeleine's right lung was partially collapsed and they increased the flow a bit to help "blow it back up." Sunday revealed some progress and we haven't heard anything further yet today. We spoke with one of the cardiac surgery fellows as well as the attending doctor and they reassured us that this is common for patients after the AV canal surgery, especially with children with Down Syndrome. The nurses hope to slowly wean over the next few days as the lung issue resolves itself.
- Feeding: Madeleine's feeds were increased to 2 cc's every 3 hours and we're hopeful that the feeds will begin to increase a little more rapidly. Its possible (likely?) that they'll be hesitant to increase feeds until the lung issues are resolved. Additionally, we've been warned that as feeds increase, they may have to go up and down as Madeleine's gut gets used to feeding again. So far, they haven't seen any signs of residuals (inability to process food) or the converse-- dumping-- where the food just passes through the gut without digestion. If either condition arises, we'll figure it out.
- Future surgery-- we raised the issue of when the gut would be reattached and got the standard response of "it depends." We have a family meeting scheduled for tomorrow afternoon so we'll push a bit more. The basic thought that was expressed yesterday is that if Madeleiene's feeding increases as we hope in the next 1-2 weeks, and if she starts gaining weight, the surgery would likely be scheduled around the first of June. Additionally, Madeleine would have to dodge any infections and other complications. Since we know how up and down the NICU can be, we know that a June 1 timeframe is tenuous at best but it at least gives us something to shoot for.
That's all for now. I'll get a report from Madeleine's nurse around noon and I'll relate anything that's groundbreaking. Enjoy the Monday-- we're just hoping it stops raining in DC.
Kirsten and Brent
In terms of Madeleine's health progress, this past weekend was largely treading water. We're a little frustrated with the slow progress and I think that Madeleine's quick recovery from surgery led us to believe that she was ready to take off. As we continue to learn in the NICU, progress is a roller coaster and we're sliding just a little bit. Still, there's nothing serious to report-- there's no infection to speak of-- so we're confident that the past few days are a mere speed bump. Here are the specifics:
- Madeleine is still on a relatively high nasal canula setting-- 6 mls and around 40% oxygen. An X-Ray on Saturday revealed that Madeleine's right lung was partially collapsed and they increased the flow a bit to help "blow it back up." Sunday revealed some progress and we haven't heard anything further yet today. We spoke with one of the cardiac surgery fellows as well as the attending doctor and they reassured us that this is common for patients after the AV canal surgery, especially with children with Down Syndrome. The nurses hope to slowly wean over the next few days as the lung issue resolves itself.
- Feeding: Madeleine's feeds were increased to 2 cc's every 3 hours and we're hopeful that the feeds will begin to increase a little more rapidly. Its possible (likely?) that they'll be hesitant to increase feeds until the lung issues are resolved. Additionally, we've been warned that as feeds increase, they may have to go up and down as Madeleine's gut gets used to feeding again. So far, they haven't seen any signs of residuals (inability to process food) or the converse-- dumping-- where the food just passes through the gut without digestion. If either condition arises, we'll figure it out.
- Future surgery-- we raised the issue of when the gut would be reattached and got the standard response of "it depends." We have a family meeting scheduled for tomorrow afternoon so we'll push a bit more. The basic thought that was expressed yesterday is that if Madeleiene's feeding increases as we hope in the next 1-2 weeks, and if she starts gaining weight, the surgery would likely be scheduled around the first of June. Additionally, Madeleine would have to dodge any infections and other complications. Since we know how up and down the NICU can be, we know that a June 1 timeframe is tenuous at best but it at least gives us something to shoot for.
That's all for now. I'll get a report from Madeleine's nurse around noon and I'll relate anything that's groundbreaking. Enjoy the Monday-- we're just hoping it stops raining in DC.
Kirsten and Brent
Friday, May 9, 2008
Quick bragging on my daughter
I'm leaving the office right now to visit my daughter in the NICU. That's right, you read that correctly. She's already been released from the Cardiac unit. I'm a proud papa!
Extubation and Continued Good News
Madeleine is off the vent and is doing great. Here are the details:
- She is breathing on a nasal canula with a relatively high flow (6 mls). They started her back at 100% oxygen but have already reduced to 60% and will go down to 40% soon. They'll continue to wean throughout the day with the eventual goal of eliminating all breathing support. (We're probably weeks away from removal of all support.
- The ostomy is working well-- she is getting output into the bag (a lot of output after surgery) and is now stooling (one of my favorite hospital words) as she is feeding on small amounts of breastmilk.
- They've removed morphine from Madeleine and will give her Tylenol 3/Oxy Contin via her NG tube (feeding tube). I'm not sure how long they'll continue the pain medication-- probably for a few days.
- They weaned off a heart medicine-- I forget the name-- and she is doing great.
Next Steps include:
- Removal of the last cardiac monitor-- there is one wire remaining inside her heart. This will likely be removed by tomorrow.
- Weaning from breathing support.
- Slow increase in feeds.
- Continued weaning from Laseks-- a diuretic administered after surgery.
- Transfer back to the NICU-- she is still in the Cardiac ICU. This could occur as early as Saturday.
Once Madeleine is back in the NICU and has established regular feeds while weaning off breathing support, we'll sit down with her doctors to determine her path moving forward. In order to come home, the benchmarks are still the same: She must be off all medical support, must be able to maintain her own temperature, and must be able to feed on her own from a bottle. Once we've met these three benchmarks-- or at least have a general idea of when these three could be met, we'll have to determine when it is best to re-attach her intestines. It is possible that we could bring Madeleine home with the colostomy bag and then would return when the doctors are more comfortable re-attaching. It is also possible that we'd schedule the surgery while she is still in the NICU. Generally, the surgery is scheduled 6 weeks after the last gut surgery. If they stick with this timeframe, Madeleine would have surgery around June 1.
In any case, those are all issues for another day/time. Today is a day to smile and celebrate! Thanks for your support.
Brent and Kirsten
- She is breathing on a nasal canula with a relatively high flow (6 mls). They started her back at 100% oxygen but have already reduced to 60% and will go down to 40% soon. They'll continue to wean throughout the day with the eventual goal of eliminating all breathing support. (We're probably weeks away from removal of all support.
- The ostomy is working well-- she is getting output into the bag (a lot of output after surgery) and is now stooling (one of my favorite hospital words) as she is feeding on small amounts of breastmilk.
- They've removed morphine from Madeleine and will give her Tylenol 3/Oxy Contin via her NG tube (feeding tube). I'm not sure how long they'll continue the pain medication-- probably for a few days.
- They weaned off a heart medicine-- I forget the name-- and she is doing great.
Next Steps include:
- Removal of the last cardiac monitor-- there is one wire remaining inside her heart. This will likely be removed by tomorrow.
- Weaning from breathing support.
- Slow increase in feeds.
- Continued weaning from Laseks-- a diuretic administered after surgery.
- Transfer back to the NICU-- she is still in the Cardiac ICU. This could occur as early as Saturday.
Once Madeleine is back in the NICU and has established regular feeds while weaning off breathing support, we'll sit down with her doctors to determine her path moving forward. In order to come home, the benchmarks are still the same: She must be off all medical support, must be able to maintain her own temperature, and must be able to feed on her own from a bottle. Once we've met these three benchmarks-- or at least have a general idea of when these three could be met, we'll have to determine when it is best to re-attach her intestines. It is possible that we could bring Madeleine home with the colostomy bag and then would return when the doctors are more comfortable re-attaching. It is also possible that we'd schedule the surgery while she is still in the NICU. Generally, the surgery is scheduled 6 weeks after the last gut surgery. If they stick with this timeframe, Madeleine would have surgery around June 1.
In any case, those are all issues for another day/time. Today is a day to smile and celebrate! Thanks for your support.
Brent and Kirsten
Thursday, May 8, 2008
Still Going Strong
This picture was taken this morning and should give you a good indication that Madeleine is doing very well. You can see in the photo that Madeleine is still intubated. The doctors were hopeful that they could remove the tube yesterday but were concerned enough by her afternoon X-Ray to delay until today. The X-Ray has already come back today and Madeleine could be extubated as early as this afternoon. (There's a small chance it could get delayed until tomorrow but this isn't a concern-- she should be off soon enough.)
Here's the game plan for today:
1) Extubate: This could occur as early as noon today.
2) Feed: The doctors will begin feeding with breastmilk 6 hours after extubation. Most likely, she'll be fed this evening.
3) Removal of surgical wires. Madeleine has one pacing wire remaining in her heart and the doctors expect to remove it.
If we meet these three milestones today, it would be a GREAT day and Madeleine would be close to returning to the NICU. Over the next week, the remaining goals would include the following:
1) Slowly increase feeding to reach Madeleine's full caloric intake.
2) Slow weaning from the nasal canula. (The breathing tube will be replaced from the canula.)
3) Removal of the arterial line. This will be removed once the doctors are convinced that she won't need additional breathing support. (As early as Friday).
4) Return to the NICU-- could occur on Friday but also possible to be delayed until next Monday.
There is one disclaimer to this entire message: Every date/timeframe is subject to immediate change and slowing down isn't necessarily bad. The largest concern remains infection and that will be the biggest thing that the doctors worry about throughout the next few days and weekend. If we can make it through the weekend without an infection, we're probably close to out of the woods and can begin focusing on other worries.
One of the questions that I've been asked is "With the heart fixed, is it reasonable to expect to see a faster recovery?" Our answer is a firm "Maybe." Long-term, the heart surgery will allow Madeleine to grow and we're expecting great results. (We'll know more about the surgery's effectiveness when they do an echocardiagram next week.) In the short-term, it is possible that Madeleine's body will struggle with the new heart and the doctors refer to this as a "breaking in period." The analogy that I've used (and haven't shared with the doctors) is an alcoholic that quits drinking and starts eating healthy food. Obviously, this will improve the person's health in the long-run but the first few weeks can be very difficult. Its still too early to know if Madeleine is going to struggle with the heart (though all signs indicate she is doing great) so while we fully expect a full turn-around and long-term success, we can't predict when she'll begin to thrive and grow.
That's all for now. We hope that our next post will report that Madeleine has been extubated and is prepared to begin feeding. Thanks again for everyone's support. Kirsten and I are beginning to breathe a little easier and its feeling good. Take care,
Kirsten and Brent
PS- Check out the new pics on the side of the blog as well.
Wednesday, May 7, 2008
Cautiously Going Great
Sorry for the lack of updates yesterday (especially to the grandparents). Kirsten and I just emotionally crashed yesterday-- in a good way-- and didn't realize many folks were as concerned. (Of course, you weren't getting the good updates from the hospital.)
Before I get into all of the nitty-gritty details, allow me one sports metaphor. (If you know me, you know how odd it is that this is my first extended sports metaphor on the blog.) Kirsten and I feel like coaches of an underdog football team playing the number one team in the nation. Our team (Madeleine) has just played a perfect first half-- we simply couldn't have played any better. While the coach of any such team is ecstatic at the first half, they are also extremely cautious to celebrate and/or relax because they know how devastating one play in the second half can be. If I extrapolate this admittedly simplistic metaphor, Madeleine's playing her guts out and simply couldn't have had a better first 24 hours and we're ecstatic. We're not expecting any Hail Mary's from the other side but we're definitely keeping our heads down and worrying about every last detail.
Okay, with the coach in me satisfied, here are the nitty-gritty details:
1) We spoke with Dr. Jonas in the afternoon a few hours after surgery and he reiterated that all of the negative surgical issues had been avoided. They're honestly too long to list out so just take our word for it-- surgery went great.
2) Madeleine has hardly needed blood pressure support. After her previous three surgeries, this was a major problem as the doctors administered "pressers" to keep her blood pressure at a stable level. This time around, they tried giving her dopamine-- a common presser-- but had to stop as her blood pressure was too high. This is great news and bodes well for her recovery.
3) Madeliene-- as expected-- has been intubated (on a ventilator) since the surgery and has been reliant on high levels of oxygen. This was somewhat surprising to us as this has not been an issue following the past three surgeries. However, the doctors and nurses assured us that this is common following a bypass surgery. Furthermore, we learned that Madeleine has done great this morning and the doctors/nurses think that she could be extubated as early as this afternoon. This is REALLY great news as we expected her to be intubated for many more days.
4) Infection: This is the major hurdle left for Madeleine and it isn't likely to be an issue in the next few days. Dr. Jonas explained that his concern for infection isn't in the first few days. Instead, he is concerned about the proximity of the ostomy site to the heart incision and the potential for infection in 4-5 days. While this is a cause for concern, even if she does get an infection, it shouldn't be in the "potentially fatal" category. Instead, it would more than likely just slow down Madeleine's recovery. We can't explain how nice it is to hear a doctor say (and I'm paraphrasing) "Something bad might happen but if it does, it wouldn't be life threatening."
Those are the major issues we're facing right now and we hope that you can see how great everything is going while appreciating how scary this situation is. Kirsten and I are feeling good and we're admittedly reserving some of this good-will until we feel completely out of the woods. Rest assured, we're confident that we will be celebrating in the not too distant future and, if you know us well, you know we won't hold our emotions in check for long.
Kirsten just brought up one other point worth mentioning. For the heart surgery, Madeleine was transferred out of the NICU to the Cardiac ICU (CICU) and we're struggling with some communication challenges. We're not unhappy with the CICU folks at all and we feel like they're doing a great job. However, we know pretty much everyone in the NICU at Children's and the relationships we established allowed us to communicate more effectively. (The NICU folks are also a little more touchy-feely-- as one might expect.) The CICU folks have been great at answering all of our questions-- and we ask a lot of them-- but we're still learning who can best provide answers to specific questions and we're learning how to read the various nurses assigned to Madeleine.
That's all for now. We're headed up to the hospital right now so that we can meet with Madeleine's doctors and-- hopefully-- witness Madeleine's extubation. Keep your prayers coming and your fingers crossed.
Kirsten and Brent
Before I get into all of the nitty-gritty details, allow me one sports metaphor. (If you know me, you know how odd it is that this is my first extended sports metaphor on the blog.) Kirsten and I feel like coaches of an underdog football team playing the number one team in the nation. Our team (Madeleine) has just played a perfect first half-- we simply couldn't have played any better. While the coach of any such team is ecstatic at the first half, they are also extremely cautious to celebrate and/or relax because they know how devastating one play in the second half can be. If I extrapolate this admittedly simplistic metaphor, Madeleine's playing her guts out and simply couldn't have had a better first 24 hours and we're ecstatic. We're not expecting any Hail Mary's from the other side but we're definitely keeping our heads down and worrying about every last detail.
Okay, with the coach in me satisfied, here are the nitty-gritty details:
1) We spoke with Dr. Jonas in the afternoon a few hours after surgery and he reiterated that all of the negative surgical issues had been avoided. They're honestly too long to list out so just take our word for it-- surgery went great.
2) Madeleine has hardly needed blood pressure support. After her previous three surgeries, this was a major problem as the doctors administered "pressers" to keep her blood pressure at a stable level. This time around, they tried giving her dopamine-- a common presser-- but had to stop as her blood pressure was too high. This is great news and bodes well for her recovery.
3) Madeliene-- as expected-- has been intubated (on a ventilator) since the surgery and has been reliant on high levels of oxygen. This was somewhat surprising to us as this has not been an issue following the past three surgeries. However, the doctors and nurses assured us that this is common following a bypass surgery. Furthermore, we learned that Madeleine has done great this morning and the doctors/nurses think that she could be extubated as early as this afternoon. This is REALLY great news as we expected her to be intubated for many more days.
4) Infection: This is the major hurdle left for Madeleine and it isn't likely to be an issue in the next few days. Dr. Jonas explained that his concern for infection isn't in the first few days. Instead, he is concerned about the proximity of the ostomy site to the heart incision and the potential for infection in 4-5 days. While this is a cause for concern, even if she does get an infection, it shouldn't be in the "potentially fatal" category. Instead, it would more than likely just slow down Madeleine's recovery. We can't explain how nice it is to hear a doctor say (and I'm paraphrasing) "Something bad might happen but if it does, it wouldn't be life threatening."
Those are the major issues we're facing right now and we hope that you can see how great everything is going while appreciating how scary this situation is. Kirsten and I are feeling good and we're admittedly reserving some of this good-will until we feel completely out of the woods. Rest assured, we're confident that we will be celebrating in the not too distant future and, if you know us well, you know we won't hold our emotions in check for long.
Kirsten just brought up one other point worth mentioning. For the heart surgery, Madeleine was transferred out of the NICU to the Cardiac ICU (CICU) and we're struggling with some communication challenges. We're not unhappy with the CICU folks at all and we feel like they're doing a great job. However, we know pretty much everyone in the NICU at Children's and the relationships we established allowed us to communicate more effectively. (The NICU folks are also a little more touchy-feely-- as one might expect.) The CICU folks have been great at answering all of our questions-- and we ask a lot of them-- but we're still learning who can best provide answers to specific questions and we're learning how to read the various nurses assigned to Madeleine.
That's all for now. We're headed up to the hospital right now so that we can meet with Madeleine's doctors and-- hopefully-- witness Madeleine's extubation. Keep your prayers coming and your fingers crossed.
Kirsten and Brent
Tuesday, May 6, 2008
Successful Surgery
We just finished speaking with the surgeon and he was very pleased with the surgery. We were warned about many possible complications and, at this point, we've avoided all of them. I'm typing on my blackberry right now so I'll wait until later to provide all the gory details. The main concern for the next 24 hours is keeping her free of infection and maintaining blood pressure. Taht's all for now. Kirsten and I are cautiously elated by this out come and we're trying to relax a little bit. Thanks to everyone for your support and prayers.
Brent and Kirsten
Brent and Kirsten
Monday, May 5, 2008
Surgery Tomorrow Morning (Tuesday)
Yes, you read that correctly. Madeleine is scheduled for heart surgery tomorrow morning at 7:30AM. We were fairly surprised by this news but we learned that Dr. Jonas-- the top heart surgeon in the area-- has an opening in his schedule tomorrow and then is booked for two weeks. (He is going out of town on Wednesday and his following week is bookd up.) After weighing the pros and cons we decided that there is very little, if any, benefit for waiting for surgery-- Madeleine's weight has actually decreased slightly the past week-- a clear indication that heart surgery is necessary-- and by waiting, we really couldn't expect to se any appreciable gain. On the flip side, by waiting, we also run the risk of Madeleine getting an infection and delaying surgery further.
Taking all of this into account, this was a fairly easy decision to make. Make no mistake about it: this is major surgery and with it, there come some serious riks. However, we feel confident that Madeleine will come through surgery stronger than ever and we look forward to providing a positive response tomorrow night. With that being said, we've been told that the first 24 hours post-surgery are often times more difficult than the surgery itself.
In short: we're nervous about the surgery and all of the potential challenges but confident in Madeleine's ultimate success and future health. Please keep Madeleine in your thoughts/prayers tomorrow. Thanks again for your support.
Brent and Kirsten
Taking all of this into account, this was a fairly easy decision to make. Make no mistake about it: this is major surgery and with it, there come some serious riks. However, we feel confident that Madeleine will come through surgery stronger than ever and we look forward to providing a positive response tomorrow night. With that being said, we've been told that the first 24 hours post-surgery are often times more difficult than the surgery itself.
In short: we're nervous about the surgery and all of the potential challenges but confident in Madeleine's ultimate success and future health. Please keep Madeleine in your thoughts/prayers tomorrow. Thanks again for your support.
Brent and Kirsten
A Great Weekend
I haven't thrown the "great" word around much but this weekend definitely qualifies. Kirsten and I were able to get away for the weekend as we left Saturday morning for Ocean City and had a relaxing weekend of staring at and listening to the ocean and reading. More importantly, while we were relaxing, Madeleine was steadily improving and Kirsten's parents were working like dervishes on our house-- Steve mowed the lawn while Carol weeded all of our borders. When they werent' working, they were up playing with Madeleine and had a great weekend.
In terms of Madeleine's health, things are going quite well. She continued feeding on breastmilk and the doctors increased her feeds twice. First, they increased her frequency to 2 cc's every three hours and then increased to 3 cc's/feed. Throughout, Madeleine continues to process the food well and the ostomy appears to be working very well. We're not sure how much more they are going to push her to feed as they want her to be eating but don't want to push her too much before surgery. As far as her heart surgery is concerned, we hope to find out tonight when the surgery will be scheduled. We've been to expect that Madeleine will be transferred to the Cardiac ICU (CICU) tomorrow and surgery could be as early as Thursday. We'll update the blog with the date as soon as we have more information.
That's all for now. Thanks for checking in with us.
Brent and Kirsten
In terms of Madeleine's health, things are going quite well. She continued feeding on breastmilk and the doctors increased her feeds twice. First, they increased her frequency to 2 cc's every three hours and then increased to 3 cc's/feed. Throughout, Madeleine continues to process the food well and the ostomy appears to be working very well. We're not sure how much more they are going to push her to feed as they want her to be eating but don't want to push her too much before surgery. As far as her heart surgery is concerned, we hope to find out tonight when the surgery will be scheduled. We've been to expect that Madeleine will be transferred to the Cardiac ICU (CICU) tomorrow and surgery could be as early as Thursday. We'll update the blog with the date as soon as we have more information.
That's all for now. Thanks for checking in with us.
Brent and Kirsten
Friday, May 2, 2008
Friday update
Not much has changed with Madeleine-- she was resting calmly this morning when I visited with her and she's taken a liking (make that an infatuation) with her pacifier. (pics will be posted later) Whenever the pacifier fell out (frequently), she voiced her disapproval. Suffice it to say: the nurses are spoiling my daughter right now.
Other than that, we're just hoping for a very boring weekend. Madeleine continues to feed on the pedia-lite and the doctors may consider introducing breastmilk some time over the weekend. Other than that, we're not expecting any other changes as the goal is to keep Madeleine calm and healthy in advance of the heart surgery. We'll find out on Monday evening when the surgery will occur-- as early as next Thursday/Friday or early the following week.
Kirsten and I are going to take a short break from the hospital-- we're headed to Ocean City tomorrow morning for a day at the beach and a night at a hotel. Carol and Steve (Kirsten's parents) are taking over hospital duties for the weekend and also have the joy of taking care of our two monsters, Grady and Savannah. :) We'll be back in full parent mode on Sunday night for bath time and I'll post pictures and ideally a movie on Monday morning. (To help out with your "case of the Mondays.")
That's all. Have a safe and enjoyable weekend.
B & K
Other than that, we're just hoping for a very boring weekend. Madeleine continues to feed on the pedia-lite and the doctors may consider introducing breastmilk some time over the weekend. Other than that, we're not expecting any other changes as the goal is to keep Madeleine calm and healthy in advance of the heart surgery. We'll find out on Monday evening when the surgery will occur-- as early as next Thursday/Friday or early the following week.
Kirsten and I are going to take a short break from the hospital-- we're headed to Ocean City tomorrow morning for a day at the beach and a night at a hotel. Carol and Steve (Kirsten's parents) are taking over hospital duties for the weekend and also have the joy of taking care of our two monsters, Grady and Savannah. :) We'll be back in full parent mode on Sunday night for bath time and I'll post pictures and ideally a movie on Monday morning. (To help out with your "case of the Mondays.")
That's all. Have a safe and enjoyable weekend.
B & K
Thursday, May 1, 2008
2nd Opinion on the Heart
Kirsten and I spoke earlier with another cardiologist regarding Madeleine's heart and other health challenges. We specifically chose the doctor that first diagnosed Madeleine's condition (in utero) for three reasons: first, he saw Madeleine in utero and in her first week of life and was familiar with her heart condition. Second, he hasn't been involved since Madeleine was transferred to Children's so while he's informed on her condition, he's impartal when it comes to her current care plan. Finally, he came across as extremely conservative when we first discussed plans for surgery and, if anyone would express reservations about the plan for surgery in the next 1-2 weeks, we'd expect him to take such a stance.
With all of this in mind, Dr. Telep listened to our story and then unequivocally agreed with the plan for surgery. He explained that while it is ideal to wait for a child to grow before operating on the heart, Madeleine's limited growth demonstrates the need for surgery. Additionally, he agreed that, once fixed, her repaired heart will help her deal with her GI issues and should also improve her overall development and growth.
Kirsten and I were relieved to know that, while Madeleine's care plan isn't ideal, we feel like surgery is the best course of action and we're doing everything we can to advocate on our behalf. We're still scared by the surgery, but we've always known she needed it and we are excited for the days when we are worried about her other health challenges.
That's all for now. Have a great night.
With all of this in mind, Dr. Telep listened to our story and then unequivocally agreed with the plan for surgery. He explained that while it is ideal to wait for a child to grow before operating on the heart, Madeleine's limited growth demonstrates the need for surgery. Additionally, he agreed that, once fixed, her repaired heart will help her deal with her GI issues and should also improve her overall development and growth.
Kirsten and I were relieved to know that, while Madeleine's care plan isn't ideal, we feel like surgery is the best course of action and we're doing everything we can to advocate on our behalf. We're still scared by the surgery, but we've always known she needed it and we are excited for the days when we are worried about her other health challenges.
That's all for now. Have a great night.
quick update
There's not much change today with Madeleine's medical status. She battled some high heart rates and breathing issues last night and its not entirely clear why. Its probably a combination of her coming off the morphine, being uncomfortable, and struggling with her heart issue. Regardless, after receiving a small amount of morphine this morning at 4AM, she has rested peacefully all day and is breathing at a very low rate. She is on a higher canula setting (they actually switched her to the vapo-therm canula) but this isn't cause for concern-- they're just keeping her comfortable. Additionally, the doctors started feeding yesterday afternoon with a very small amount of pedia-lite-- essentially water with electrolytes. They decided to use Pedia-lite instead of formula or breast milk as they wanted to see how she reacted. After a day of feeding, she appears to be doing well and the doctors are just taking a very slow approach to feeding. They will get a new X-Ray each day and will continue to assess before switching to feeding with breast milk. As stated yesterday, they are in no rush as their goal is "do no harm" right now.
In terms of heart surgery, we're still planning to have surgery in the next few weeks and expect to hear about the exact date for surgery on Monday. While we await this date, we have contacted an external cardiologist to get a second opinion regarding the planned surgery. We don't disagree with the planned course of action. Instead, we just want to make sure that this makes sense as we weigh this very difficult decision.
That's all as far as medical updates are concerned. Here's just a few more specific thank you's and comments:
- Thanks to Mary Kay Rau and Liz Singley for joinging us on the March this past weekend. They braved the nasty weather and we are really appreciative.
- Congratulations to the Kessel family-- our neighbors in West Virginia. Judy had successful back surgery next weekend. FYI-- our goal is to take Madeleine to John Henry Days as our late "Kick-off to summer."
- Thanks again to everyone else for all of your support. We can't say this enough-- your support humbles us and we're eternally grateful.
Have a great day,
Brent and Kirsten
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