All,
If you're just reading our information for the first time see posts below for the whole story. Also, to see photos, please follow the following link: http://www1.snapfish.com/thumbnailshare/AlbumID=186529629/a=13247378_13247378/t_=13247378
Okay-- with that out of the way, let me just lay down a few quick thoughts. First, let me explain this blog. We're starting this blog for the following reasons:
1) We want to communicate with all of our friends and family. If we've learned anything from this experience, its that we have an amazing network of friends and family and-- much to our surprise-- everyone wants to know more information about our situation. We feel blessed by everyone's concern and hope to post information that's helpful and informative.
2) We want to have a record of this time. Despite all of the challenges and difficulties we face, we want to look back on this time and celebrate the birth of our wonderful, beautiful child. This blog provides a great way for us to record many of the different obstacles, challenges, and also successes.
3) This helps Brent process. I've been journaling and talking as much as possible and have learned that writing things out really helps me clear my head and stay even keeled during these difficult times.
With that out of the way, let me provide a few suggestions to those not familiar with blogging:
1) Please refer folks to this site rather than to my email. The goal is to cut down on emailing so that we don't get swamped just responding to emails.
2) Please post your comments to this blog-- we love reading everyone's comments and by posting to the blog, we keep a clean record. If you don't know how to post, please check with one of your tech savvy friends-- once you get the hang of it, you'll find blogging to be very cool and hip-- yes, this is the dorky, IT professional talking right now.
That's all for now. Oh yeah-- you probably want to know how Madeleine is doing so here's the update for all:
For those not familiar (if you already know the early days, feel free to skip below) after being born on Monday, March 3, Madeleine enjoyed a large number of positive days in the NICU. She began eating breastmilk on Tuesday (Kirsten is to be commended) and each day they increased her feedings, starting with 3 cc's and increasing each day by an additional 3 cc's. Madeleine hasn't developed the suck/swallow reflex yet so they have been feeding her via a tube to her stomach. In addition to the breast milk, Madeleine was receiving additional nutrition from an IV that was inserted in her belly button after birth. The original goal of the doctors was to remove this IV by Monday, March 10th and as late as Sunday evening, she was on target to meet this goal.
Then Monday arrived and with it a host of troubling events. In no specific order, the doctors identified the following:
1) They noticed that Madeleine wasn't processing her food late Sunday evening. Prior to feeding her, the nurses attached a syringe to her feeding tube and attempted to suck anything out of her stomach. For the first time, Madeleine had residual food in her stomach on Sunday evenings feedings (scheduled every 3 hours)-- first 4 cc's and then 9 cc's. With the second set of residuals, the doctors immediately stopped feeding her via the stomach tube fearing that Madeleine was suffering from Necrotizing enterocolitis (NEC). This fear was confirmed early Monday morning via X-Ray. The short story of NEC is this: the intestines get inflamed and air gets into the lining of the intestines. It is very painful and can lead to two bad things: infection and perferation of the intestines. Infection is always bad, especially with small babies and perferation is worse as it requires pretty serious surgery. To date-- the doctors haven't identified either. Madeleine is on three different antibiotics and is also being X-Ray'd every 8 hours to ensure the NEC isn't progressing. Its been a roller coaster since Monday morning with her condition taking a downturn early Tuesday morning but right now, the doctors see trends of improvement and are hopeful that this will continue. Hear's the thing we've learned about NEC: doctors and medical practitioners hate it because it is utterly unpredictable. They can monitor it and administer drugs to contain the worst parts but for the most part, they're forced to sit and wait for results, just like the rest of us.
2) While NEC is bad enough by itself, Madeleine appears to have a penchant for drama... Additional drama was identified on Monday morning when our head doctor Dr. Lotze ordered a heart scan.
(Allow me a quick aside-- Madeleine's doctors and nurses are simply the greatest human beings I've ever met. If you know a NICU nurse, please hug them and thank them for us. They are doing God's work and deserve to be commended each every day. Kirsten and I feel blessed and simply don't know how to thank them. I'll most likely provide glowing updates on individual doctors and nurses in the days ahead but I'll give them the best compliment I can right now: I don't like it one bit that Madeleine isn't sleeping under our roof right now but I am sleeping well in the belief that the best people I've ever met, our taking care of my daughter. Even better-- rather than just focus on our daughter and all the other children in the NICU, the doctors and nurses are extremely concerned about our well being and are just nice people. They work long hours doing extremely difficult chores and all the while, they're nice to everyone-- they're simply saints and we can't thank them enough.)
Okay-- sorry for that aside but it needed to be said, now back to the medical update. Dr. Lotze ordered a scan of the heart and her worries were confirmed-- the heart is leaking blood from a condition called Patent ductus arteriosus (PDA). This duct is typically open while the baby is in utero and is closed after birth. The PDA, by itself, isn't a huge problem but it can cause other issues, like NEC, and needs to be addressed. The problem it presents is that it diverts blood away from important areas of the body (like the intestines) and can prevent Madeleine from reparing these areas. Here's the good news about PDA-- the body can repair it on its own and if that doesn't happen, surgery is an option and is, relatively speaking, minor. As of right now, Dr. Lotze assumes that the PDA will need to be corrected via surgery but is hoping that an electrocardiogram (EKG or echo) scheduled for Wednesday morning will show signs of improvement. If not, and the NEC shows signs of improvement/stability, they will consider surgery for Wednesday afternoon or Thursday. The scary side is that, if the NEC isn't stable, one cause could be the heart but Dr. Lotze doesn't want to have to operate if the NEC poses a stability risk. Its a potentially scary scenario-- we know the potential cause of the NEC but the NEC itself poses a risk to solving the cause. Note: I'm providing worse case scenarios here-- please don't get too freaked out-- the Doctors are confident that each of these issues will be resolved in a positive manner.
3) This is the scariest news but before telling, I'll say that it is already resolved and is not a problem. With the end already known, the doctors also identified a clot that had formed on the end of the IV line and posed a serious threat to the heart. Typically, such a clot can be eliminated via blood thinners or a surgical procedure. However, given Madeleine's bleeding in the intestines and her small size, the doctors didn't think either option was feasible. Instead, they felt the best solutions was simply to pull the line and hope that the clot would pass through the heart without any problems. While this procedure was conducted, we chose to go to lunch and pray while hoping that our phone didn't ring. It didn't and with 36 hours passed since the line was removed, we can be quite confident that the clot is no longer an issue.
That's the scary update, here's the gameplan for tomorrow. (I'm going to keep it short since I'm tired.)
1) The nurses are monitoring Madeleine's blood throughout the night. For most of Tuesday, Madeleine received platelet transfusions and they're hoping this stops as a potential sign that the intestinal bleeding is nearing an end. (as of press time, her blood is stable and looks good-- a great sign.)
2) The nurses are continuing to X-Ray her intestines every 8 hours to monitor the NEC. The last one was done at 9PM and showed no negative signs-- potentially slight improvements.
3) Brent and Kirsten are going to sleep as much as possible, pray, and thank each and every one of their multitude of blessings.
In the morning, they will conduct the next EKG and will determine a course of action for addressing the NEC and PDA. As we see it, there are three options:
1) Best case: The NEC and PDA show signs of improvement and no surgeries are performed. The doctors stay the course and Madeleine begins regular feedings again some time next week.
2) Next Best case (Brent's gut says most likely): The NEC shows signs of improvement/stabilization and a surgery is scheduled for late Wednesday or Thursday morning to address the PDA.
3) Worst case: The NEC gets worse and Madeleine is moved to children's hospital for intestinal surgery. This would be a negative development but isn't awful-- the doctors seem great and believe they can handle it. Still, we're hoping this doesn't occur.
In any case, if you're still reading, thanks for your dedication. We're praying, crossing our fingers, and-- most of all-- enjoying our daughter as much as possible and fully expect to report better news tomorrow night. Thanks all.
Kirsten and Brent
If you're just reading our information for the first time see posts below for the whole story. Also, to see photos, please follow the following link: http://www1.snapfish.com/thumbnailshare/AlbumID=186529629/a=13247378_13247378/t_=13247378
Okay-- with that out of the way, let me just lay down a few quick thoughts. First, let me explain this blog. We're starting this blog for the following reasons:
1) We want to communicate with all of our friends and family. If we've learned anything from this experience, its that we have an amazing network of friends and family and-- much to our surprise-- everyone wants to know more information about our situation. We feel blessed by everyone's concern and hope to post information that's helpful and informative.
2) We want to have a record of this time. Despite all of the challenges and difficulties we face, we want to look back on this time and celebrate the birth of our wonderful, beautiful child. This blog provides a great way for us to record many of the different obstacles, challenges, and also successes.
3) This helps Brent process. I've been journaling and talking as much as possible and have learned that writing things out really helps me clear my head and stay even keeled during these difficult times.
With that out of the way, let me provide a few suggestions to those not familiar with blogging:
1) Please refer folks to this site rather than to my email. The goal is to cut down on emailing so that we don't get swamped just responding to emails.
2) Please post your comments to this blog-- we love reading everyone's comments and by posting to the blog, we keep a clean record. If you don't know how to post, please check with one of your tech savvy friends-- once you get the hang of it, you'll find blogging to be very cool and hip-- yes, this is the dorky, IT professional talking right now.
That's all for now. Oh yeah-- you probably want to know how Madeleine is doing so here's the update for all:
For those not familiar (if you already know the early days, feel free to skip below) after being born on Monday, March 3, Madeleine enjoyed a large number of positive days in the NICU. She began eating breastmilk on Tuesday (Kirsten is to be commended) and each day they increased her feedings, starting with 3 cc's and increasing each day by an additional 3 cc's. Madeleine hasn't developed the suck/swallow reflex yet so they have been feeding her via a tube to her stomach. In addition to the breast milk, Madeleine was receiving additional nutrition from an IV that was inserted in her belly button after birth. The original goal of the doctors was to remove this IV by Monday, March 10th and as late as Sunday evening, she was on target to meet this goal.
Then Monday arrived and with it a host of troubling events. In no specific order, the doctors identified the following:
1) They noticed that Madeleine wasn't processing her food late Sunday evening. Prior to feeding her, the nurses attached a syringe to her feeding tube and attempted to suck anything out of her stomach. For the first time, Madeleine had residual food in her stomach on Sunday evenings feedings (scheduled every 3 hours)-- first 4 cc's and then 9 cc's. With the second set of residuals, the doctors immediately stopped feeding her via the stomach tube fearing that Madeleine was suffering from Necrotizing enterocolitis (NEC). This fear was confirmed early Monday morning via X-Ray. The short story of NEC is this: the intestines get inflamed and air gets into the lining of the intestines. It is very painful and can lead to two bad things: infection and perferation of the intestines. Infection is always bad, especially with small babies and perferation is worse as it requires pretty serious surgery. To date-- the doctors haven't identified either. Madeleine is on three different antibiotics and is also being X-Ray'd every 8 hours to ensure the NEC isn't progressing. Its been a roller coaster since Monday morning with her condition taking a downturn early Tuesday morning but right now, the doctors see trends of improvement and are hopeful that this will continue. Hear's the thing we've learned about NEC: doctors and medical practitioners hate it because it is utterly unpredictable. They can monitor it and administer drugs to contain the worst parts but for the most part, they're forced to sit and wait for results, just like the rest of us.
2) While NEC is bad enough by itself, Madeleine appears to have a penchant for drama... Additional drama was identified on Monday morning when our head doctor Dr. Lotze ordered a heart scan.
(Allow me a quick aside-- Madeleine's doctors and nurses are simply the greatest human beings I've ever met. If you know a NICU nurse, please hug them and thank them for us. They are doing God's work and deserve to be commended each every day. Kirsten and I feel blessed and simply don't know how to thank them. I'll most likely provide glowing updates on individual doctors and nurses in the days ahead but I'll give them the best compliment I can right now: I don't like it one bit that Madeleine isn't sleeping under our roof right now but I am sleeping well in the belief that the best people I've ever met, our taking care of my daughter. Even better-- rather than just focus on our daughter and all the other children in the NICU, the doctors and nurses are extremely concerned about our well being and are just nice people. They work long hours doing extremely difficult chores and all the while, they're nice to everyone-- they're simply saints and we can't thank them enough.)
Okay-- sorry for that aside but it needed to be said, now back to the medical update. Dr. Lotze ordered a scan of the heart and her worries were confirmed-- the heart is leaking blood from a condition called Patent ductus arteriosus (PDA). This duct is typically open while the baby is in utero and is closed after birth. The PDA, by itself, isn't a huge problem but it can cause other issues, like NEC, and needs to be addressed. The problem it presents is that it diverts blood away from important areas of the body (like the intestines) and can prevent Madeleine from reparing these areas. Here's the good news about PDA-- the body can repair it on its own and if that doesn't happen, surgery is an option and is, relatively speaking, minor. As of right now, Dr. Lotze assumes that the PDA will need to be corrected via surgery but is hoping that an electrocardiogram (EKG or echo) scheduled for Wednesday morning will show signs of improvement. If not, and the NEC shows signs of improvement/stability, they will consider surgery for Wednesday afternoon or Thursday. The scary side is that, if the NEC isn't stable, one cause could be the heart but Dr. Lotze doesn't want to have to operate if the NEC poses a stability risk. Its a potentially scary scenario-- we know the potential cause of the NEC but the NEC itself poses a risk to solving the cause. Note: I'm providing worse case scenarios here-- please don't get too freaked out-- the Doctors are confident that each of these issues will be resolved in a positive manner.
3) This is the scariest news but before telling, I'll say that it is already resolved and is not a problem. With the end already known, the doctors also identified a clot that had formed on the end of the IV line and posed a serious threat to the heart. Typically, such a clot can be eliminated via blood thinners or a surgical procedure. However, given Madeleine's bleeding in the intestines and her small size, the doctors didn't think either option was feasible. Instead, they felt the best solutions was simply to pull the line and hope that the clot would pass through the heart without any problems. While this procedure was conducted, we chose to go to lunch and pray while hoping that our phone didn't ring. It didn't and with 36 hours passed since the line was removed, we can be quite confident that the clot is no longer an issue.
That's the scary update, here's the gameplan for tomorrow. (I'm going to keep it short since I'm tired.)
1) The nurses are monitoring Madeleine's blood throughout the night. For most of Tuesday, Madeleine received platelet transfusions and they're hoping this stops as a potential sign that the intestinal bleeding is nearing an end. (as of press time, her blood is stable and looks good-- a great sign.)
2) The nurses are continuing to X-Ray her intestines every 8 hours to monitor the NEC. The last one was done at 9PM and showed no negative signs-- potentially slight improvements.
3) Brent and Kirsten are going to sleep as much as possible, pray, and thank each and every one of their multitude of blessings.
In the morning, they will conduct the next EKG and will determine a course of action for addressing the NEC and PDA. As we see it, there are three options:
1) Best case: The NEC and PDA show signs of improvement and no surgeries are performed. The doctors stay the course and Madeleine begins regular feedings again some time next week.
2) Next Best case (Brent's gut says most likely): The NEC shows signs of improvement/stabilization and a surgery is scheduled for late Wednesday or Thursday morning to address the PDA.
3) Worst case: The NEC gets worse and Madeleine is moved to children's hospital for intestinal surgery. This would be a negative development but isn't awful-- the doctors seem great and believe they can handle it. Still, we're hoping this doesn't occur.
In any case, if you're still reading, thanks for your dedication. We're praying, crossing our fingers, and-- most of all-- enjoying our daughter as much as possible and fully expect to report better news tomorrow night. Thanks all.
Kirsten and Brent
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