Since the posting last Saturday, Madeleine has remained stable but has encountered a few bumps. On Sunday morning, the nurses found some residual food in Madeleine's stomach. They were a bit concerned as the residual included some yellow, indicating that Madeleine's intestines could be backing up. This isn't a major concern as the doctors and nurses told us in advance to expect such days. Based on Madeleine's past intestinal issues, the doctos halted Madeleine's feeds and an X-Ray was taken indicating that some areas of the intestines were dilated. With this information, the doctors halted all feeding for Sunday and ordered a new X-Ray for Monday morning.
This morning, the X-Ray indicated that the dilation had decreased- a positive development. Furthermore, Madeleine appears to be doing well-- she's resting very well and is breathing with very little support-- only 2 liters from the nasal canula. (She pulls the canula out frequently and it doesn't seem to affect her much-- the doctors could wean her further but see no need at this time.)
Given the positive X-Ray, the doctors were prepared to begin feeding again but Madeleine's surgeons decided to postpone feeding as they want to ensure that her Ostomy is functioning properly. They have scheduled a procedure this afternoon where they will inject fluid into her intestines with the goal of identifying any potential blockages. They aren't overly concerned about anything-- they just want to make sure that the intestines are functioning properly before they allow feeds to begin again. I'm sitting by the phone waiting for an update and I'll post as soon as something comes in. I hope to report that the test identified nothing and that Madeleine will begin feeding again tonight.
Brent
Monday, March 31, 2008
Saturday, March 29, 2008
3/29 A Good Day
Today was a very uneventful day in the life of Madeleine. In other words, today was a very good day. Joe and Sarah (my twin brother and sister-in-law) flew in last night and we spent the morning with Madeleine. We noticed a marked difference with Madeleine post feeding-- she's very calm and subdued-- and it appears that her energy is focused on digesting. (this is a very good thing). Kirsten, Sarah, and Joe all held her for extended periods today and she seemed extremely content to be held and to be eating again. The doctors and nurses seemed very pleased-- they've weaned her down to 2 mls on a nasal canula (rather low level) and seem content to just continue her feeds and allow her to grow over the next few days. With all of the uncertainty and tension over the past week, the past 48 hours have been very cathartic-- we're just watching Madeleine eat and slowly grow. They took her weight last night and she weighed 1320 grams-- an 80 gram weight gain since last Tuesday. (For those of you more comfortable with the English system, 1320 is approximately 2 lbs 15 oz.) Its dangerous to take too much from this weight gain as it is possible that the nurses held her various cords differently, thereby influencing the scale. Still, it does indicate that Madeleine is trending in the right direction.
In any case, I don't want to get too far ahead as it is a bumpy road in the NICU but today has been a very good day for Madeleine as well as for our extended network of friends. Nancy and Matt Sharai- friends from Flint-- were able to bring their twin boys-- born in late December-- home for the first time. They're still pretty small-- under 5 lbs-- but I'm fairly familiar with twins from the Flint area that weren't hampered long term by their small size. :) Additionally, our good friends Mike and Kim Jackson (yes, we have a friend named Michael Jackson) are the proud parents of healthy twins as Sophia and Calvin Jackson (hope the spelling is correct) were born today. Obviously, the good will directed to us is not only benefitting us-- its spilling over to those close to us.
Okay, that's enough good news for one post. We hope to post continued good news tomorrow.
In any case, I don't want to get too far ahead as it is a bumpy road in the NICU but today has been a very good day for Madeleine as well as for our extended network of friends. Nancy and Matt Sharai- friends from Flint-- were able to bring their twin boys-- born in late December-- home for the first time. They're still pretty small-- under 5 lbs-- but I'm fairly familiar with twins from the Flint area that weren't hampered long term by their small size. :) Additionally, our good friends Mike and Kim Jackson (yes, we have a friend named Michael Jackson) are the proud parents of healthy twins as Sophia and Calvin Jackson (hope the spelling is correct) were born today. Obviously, the good will directed to us is not only benefitting us-- its spilling over to those close to us.
Okay, that's enough good news for one post. We hope to post continued good news tomorrow.
Friday, March 28, 2008
3/28 Feeding has Begun
Before typing this entry, I called to confirm that they have indeed fed Madeleine. This is a definite step forward. I'll echo my earlier comments that we can expect some ups and downs with the feeding but today has been a good day. We met with the doctors this morning and they were encouraged by her X-Ray as it indicated an improved picture in her bowels. Additionally, her lungs appear to have expelled much of the fluid and her heart is showing no signs of straining. This is all very good news.
That's all for now. We're going back to the hospital this evening and should learn some more. The doctors put her on a very slow schedule-- they decided to give 1/2cc (1/8 of a teaspoon) every hour. They may increase this feed after a day to 1cc/hour but only if she demonstrates that she is doing well. (We all know that Bushey's like to eat, so I'm not expecting any major issues.)
That's all for now-- thanks for everyone's concerns. We will continue to post frequently. Thanks,
Brent
PS- See a few new pictures to the right. We've posted a few more on snapfish at: http://www1.snapfish.com/thumbnailshare/AlbumID=186529629/a=13247378_13247378/t_=13247378. We need to create some better albums and once done, we'll post to the blog.
That's all for now. We're going back to the hospital this evening and should learn some more. The doctors put her on a very slow schedule-- they decided to give 1/2cc (1/8 of a teaspoon) every hour. They may increase this feed after a day to 1cc/hour but only if she demonstrates that she is doing well. (We all know that Bushey's like to eat, so I'm not expecting any major issues.)
That's all for now-- thanks for everyone's concerns. We will continue to post frequently. Thanks,
Brent
PS- See a few new pictures to the right. We've posted a few more on snapfish at: http://www1.snapfish.com/thumbnailshare/AlbumID=186529629/a=13247378_13247378/t_=13247378. We need to create some better albums and once done, we'll post to the blog.
Thursday, March 27, 2008
3/27 Ups and Downs
Welcome to the NICU roller coaster-- that's the theme for this post. My apologies for the lack of updates over the last two days. I've been busy at work and when I've had a moment to post, I haven't been entirely clear on what to say. I'll give my summary at the end, but here's the information we've learned over the past few days:
1) Madeleine didn't start feeding last Tuesday contrary to what the last post said. The doctors were prepared to start feeding on Tuesday and the last step was taking an X-Ray. The X-Ray revealed that Madeleine's intestines were "gassy." All intestines should have gas in them but when you looked at an X-Ray, rather than looking evenly filled with gas (like a coiled garden hose), her intestines resembled more closely sausage links. (not a perfect visual but you get the idea.) Yesterday, the doctors determined that it is possible that Madeleine is swallowing air from the nasal canula and simply couldn't pass all of the gas through the intestines. Therefore, they inserted a pump into her stomach to pull the air out of the intestines. An X-Ray this morning will confirm that this worked but our nurse this morning confirmed that her stomach looks less lumpy. If this is the case, it is possible that the pump will be removed and feedings will begin today or tomorrow.
2) The X-Ray this morning should also give us more information about her heart and lungs. As one can expect with Madeleine's heart condition, she is breathing faster than they want. The concern yesterday is that her breathing may be an indicator that the heart is demonstrating signs of failure. (Failure is a scary word but its the word they use to describe her heart. If her heart "fails" it isn't disastrous, she just needs surgery. Make no mistake about it: her heart will fail-- we're just hoping it doesn't occur for at least a few months.) This isn't likely-- based on our discussions with cardiologists-- but the X-Ray this morning should provide a better picture of the heart. Additionally, it will give us a better idea of her lung condition. If the heart is enlarged and/or the lungs are partially filled with liquid, this will lead them to focus more on the heart. On the flip side, Madeleine'e vital signs (heart rate, breathing rate, etc.) appear to be improving and this is an indication that her body is readjusting. Further underscoring the importance of starting feeding, the cardiologists believe that once her feedings begin her body will slow down breathing as it focuses on digestion.
I guess the summary of the past few days (which I've rushed and not explained well) is that Madeleine is in a very frustrating stage. She is making progress and is still ahead of the schedule posted last week but it seems that any procedure that the doctors contemplate must be weighed against the negative side effects. This frustration speaks to the interrelated nature of the human body and the complicated challenges faced by Madeleine. In short, our game plan is simple: keep Madeleine comfortable, get her feeding as soon as she demonstrates she is ready, and over the next two-three weeks, hope that she begins to put on weight. While focusing on this game plan, the doctors will also "worry" about her heart issues and anytime she takes a step back, they'll look to see if the heart is worsening. Obviously, the goal remains that she won't need heart surgery any time soon and we still think its likely that she'll have the intestinal re-attachment surgery and will come home before having heart surgerty 4-6 months from now. However, as we've learned many times over the past few weeks, the best laid plans.... you get the idea. :)
I'll try to post more often-- it is very cathartic and I'm frustrated for not writing the last two days-- but I'll warn everyone that bad news/up and down information is to be expected-- we've been warned that the re-introduction of feeding in babies with NEC is very traumatic (akin to running a marathon for us) and the doctors will let Madeleine's body tell them what to do next. While we expect these ups and downs, we're confident that she's moving in the right direction. Moreover, Kirsten and I are slowly becoming comfortable with the ups and downs (comfortable isn't the right word but gets closer to our sentiment) and we're enjoying our daughter-- despite not gaining weight over the past week, she's developing more and we'll post pictures in the next few days to show this development.
Thanks-- again sorry for the lack of posts. I'll try to update everyone this afternoon/evening with our update from rounds-- we're waiting for the doctors right now. Have a great day!
Brent and Kirsten
1) Madeleine didn't start feeding last Tuesday contrary to what the last post said. The doctors were prepared to start feeding on Tuesday and the last step was taking an X-Ray. The X-Ray revealed that Madeleine's intestines were "gassy." All intestines should have gas in them but when you looked at an X-Ray, rather than looking evenly filled with gas (like a coiled garden hose), her intestines resembled more closely sausage links. (not a perfect visual but you get the idea.) Yesterday, the doctors determined that it is possible that Madeleine is swallowing air from the nasal canula and simply couldn't pass all of the gas through the intestines. Therefore, they inserted a pump into her stomach to pull the air out of the intestines. An X-Ray this morning will confirm that this worked but our nurse this morning confirmed that her stomach looks less lumpy. If this is the case, it is possible that the pump will be removed and feedings will begin today or tomorrow.
2) The X-Ray this morning should also give us more information about her heart and lungs. As one can expect with Madeleine's heart condition, she is breathing faster than they want. The concern yesterday is that her breathing may be an indicator that the heart is demonstrating signs of failure. (Failure is a scary word but its the word they use to describe her heart. If her heart "fails" it isn't disastrous, she just needs surgery. Make no mistake about it: her heart will fail-- we're just hoping it doesn't occur for at least a few months.) This isn't likely-- based on our discussions with cardiologists-- but the X-Ray this morning should provide a better picture of the heart. Additionally, it will give us a better idea of her lung condition. If the heart is enlarged and/or the lungs are partially filled with liquid, this will lead them to focus more on the heart. On the flip side, Madeleine'e vital signs (heart rate, breathing rate, etc.) appear to be improving and this is an indication that her body is readjusting. Further underscoring the importance of starting feeding, the cardiologists believe that once her feedings begin her body will slow down breathing as it focuses on digestion.
I guess the summary of the past few days (which I've rushed and not explained well) is that Madeleine is in a very frustrating stage. She is making progress and is still ahead of the schedule posted last week but it seems that any procedure that the doctors contemplate must be weighed against the negative side effects. This frustration speaks to the interrelated nature of the human body and the complicated challenges faced by Madeleine. In short, our game plan is simple: keep Madeleine comfortable, get her feeding as soon as she demonstrates she is ready, and over the next two-three weeks, hope that she begins to put on weight. While focusing on this game plan, the doctors will also "worry" about her heart issues and anytime she takes a step back, they'll look to see if the heart is worsening. Obviously, the goal remains that she won't need heart surgery any time soon and we still think its likely that she'll have the intestinal re-attachment surgery and will come home before having heart surgerty 4-6 months from now. However, as we've learned many times over the past few weeks, the best laid plans.... you get the idea. :)
I'll try to post more often-- it is very cathartic and I'm frustrated for not writing the last two days-- but I'll warn everyone that bad news/up and down information is to be expected-- we've been warned that the re-introduction of feeding in babies with NEC is very traumatic (akin to running a marathon for us) and the doctors will let Madeleine's body tell them what to do next. While we expect these ups and downs, we're confident that she's moving in the right direction. Moreover, Kirsten and I are slowly becoming comfortable with the ups and downs (comfortable isn't the right word but gets closer to our sentiment) and we're enjoying our daughter-- despite not gaining weight over the past week, she's developing more and we'll post pictures in the next few days to show this development.
Thanks-- again sorry for the lack of posts. I'll try to update everyone this afternoon/evening with our update from rounds-- we're waiting for the doctors right now. Have a great day!
Brent and Kirsten
Tuesday, March 25, 2008
3/25 Feeding Begins
That's the good word from Kirsten at the hospital-- I came into work this morning. Madeleine dind't have the best night-- she is receiving a small amount of oxygen in her nasal canula as she's struggling a bit with her lungs. Despite me being worried, Kirsten said that the doctors and nurses don't see this as a problem and I guess they know more than me (though I'm loathe to admit it.) They all explained that premie babies go up and down and that Madeleine's current struggles are to be expected. Despite knowing this and being told to expect up and down days, I still don't like it.
While the feeding beginning is great news, it does come with a few cautions:
1) Feeding will go extremely slowly-- they're giving her 1 cc (1/4 of 1 teaspoon) to start and don't plan on adding more than 1 cc/day.
2) There is a chance-- albeit a small one-- that NEC can re-occur. There's no way to tell why and no evidence that can suggest any type of likelihood. That being said, its always out there. (Have I mentioned that I don't like NEC?)
In short: Madeleine continues to move forward and that's the best news we can report. We'd like to eliminate some of the worries but every parent I know just keeps smiling when I talk and saying things like "when you stop worrying about one thing, another pops up."
If you're praying today, pray that Madeleiene calms down enough so that I can hold her tonight... That's the best medicine for me.
Brent
PS-- There is an echocardiagram scheduled for this afternoon and Madeleine will also be examined by an opthamologist today or tomorrow-- they didn't have a firm schedule. We'll post the reports as they come in-- the goal is that the exams don't find anything (or anything new.)
While the feeding beginning is great news, it does come with a few cautions:
1) Feeding will go extremely slowly-- they're giving her 1 cc (1/4 of 1 teaspoon) to start and don't plan on adding more than 1 cc/day.
2) There is a chance-- albeit a small one-- that NEC can re-occur. There's no way to tell why and no evidence that can suggest any type of likelihood. That being said, its always out there. (Have I mentioned that I don't like NEC?)
In short: Madeleine continues to move forward and that's the best news we can report. We'd like to eliminate some of the worries but every parent I know just keeps smiling when I talk and saying things like "when you stop worrying about one thing, another pops up."
If you're praying today, pray that Madeleiene calms down enough so that I can hold her tonight... That's the best medicine for me.
Brent
PS-- There is an echocardiagram scheduled for this afternoon and Madeleine will also be examined by an opthamologist today or tomorrow-- they didn't have a firm schedule. We'll post the reports as they come in-- the goal is that the exams don't find anything (or anything new.)
Monday, March 24, 2008
3/24 Update and thoughts on Intestinal issues
We have another good update today—not much different from yesterday but the attending neonatologist, Dr. Baumgart, confirmed everything from the weekend. Dr. Baumgart reiterated that Madeleine continues to beat all of their predictions and this is a great sign. Perhaps the best news is that Dr. Baumgart said, “at this time, I can’t predict anything bad.” We know this is pretty hopeful and we can’t forget all of the challenges for any baby in the NICU but that reinforced our feel good feeling. For the short term, we’re not taking Madeleine out of the isolet today as she’s still a little agitated with all of the changes in her medication and we’re hoping that by tomorrow she’ll be a bit more relaxed when they begin feeding. All in all, today is pretty boring and that’s the way we like it.
Since there’s not much else to report on her current condition, let me take a second to sort out my thoughts on the future impact of missing your large intestines. First, let me encourage everyone with relevant experience to comment on this section—we’re just kinda learning. Here’s what we know about the intestines:
1) The Large intestines main purpose in life is the absorption of water.
2) The small intestines absorb nearly all of the nutrients that the body needs to survive.
3) Many people live without their large intestines. You can’t live without your small intestines.
4) Madeleine has all of her small intestines and none of her large intestines. Additionally, she has her rectum (sorry for all the graphic details) and this will allow her small intestines to be re-attached. Visually, you won't notice anything.
5) The largest struggle that Madeleine faces with the loss of her Large Intestines is dehydration. Over time, her body will learn to absorb water through the small intestines so this issue should decrease over time.
6) As far as diet is concerned, we’ve been told that long-term, there shouldn’t be major changes necessary and we’ll just need to identify any problem foods—shouldn’t be too hard.
That’s about all we know right now. To be certain, it isn’t good that she has lost her large intestines but it doesn’t seem that major to us and we’re basing this opinion on what our doctors have told us and what other friends have mentioned—we’ve learned that a couple of our friends don’t have their large intestines and we never knew. The major tricky part to all of our “knowledge” is that nearly everyone we’ve talked to—including our doctors—has only dealt with adults that are missing their large intestines. We’ve yet to hear about a specific case where an infant is missing the small intestines. We need to push the doctors to identify some cases as I’d like to talk with parents about how they worked with their infant child. After all, if an older kid or an adult is thirsty, it is easy for them to recognize it and drink a glass of water. Madeleine is doing great but she isn’t going to start speaking any time soon…
Okay, I’ve sorted my brain out and I hope it helps answer some of the questions you might have about the impact of not having your large intestines. Again, we appreciate any comments/insight that folks can offer on this topic as it is something we’ll need to begin addressing immediately once Madeleine comes home.
Take care,
Brent & Kirsten
Since there’s not much else to report on her current condition, let me take a second to sort out my thoughts on the future impact of missing your large intestines. First, let me encourage everyone with relevant experience to comment on this section—we’re just kinda learning. Here’s what we know about the intestines:
1) The Large intestines main purpose in life is the absorption of water.
2) The small intestines absorb nearly all of the nutrients that the body needs to survive.
3) Many people live without their large intestines. You can’t live without your small intestines.
4) Madeleine has all of her small intestines and none of her large intestines. Additionally, she has her rectum (sorry for all the graphic details) and this will allow her small intestines to be re-attached. Visually, you won't notice anything.
5) The largest struggle that Madeleine faces with the loss of her Large Intestines is dehydration. Over time, her body will learn to absorb water through the small intestines so this issue should decrease over time.
6) As far as diet is concerned, we’ve been told that long-term, there shouldn’t be major changes necessary and we’ll just need to identify any problem foods—shouldn’t be too hard.
That’s about all we know right now. To be certain, it isn’t good that she has lost her large intestines but it doesn’t seem that major to us and we’re basing this opinion on what our doctors have told us and what other friends have mentioned—we’ve learned that a couple of our friends don’t have their large intestines and we never knew. The major tricky part to all of our “knowledge” is that nearly everyone we’ve talked to—including our doctors—has only dealt with adults that are missing their large intestines. We’ve yet to hear about a specific case where an infant is missing the small intestines. We need to push the doctors to identify some cases as I’d like to talk with parents about how they worked with their infant child. After all, if an older kid or an adult is thirsty, it is easy for them to recognize it and drink a glass of water. Madeleine is doing great but she isn’t going to start speaking any time soon…
Okay, I’ve sorted my brain out and I hope it helps answer some of the questions you might have about the impact of not having your large intestines. Again, we appreciate any comments/insight that folks can offer on this topic as it is something we’ll need to begin addressing immediately once Madeleine comes home.
Take care,
Brent & Kirsten
Second video-- she moves!
I never thought I'd become the annoying father that takes pictures of everything... I was wrong... and I'm not upset.
Madeleine's First Video
See the first video of Madeleine below. I don't think I'll get any Oscars for it (biased voters.) We had a fun day yesterday holding Madeleine but we may have had too much fun. At the end, Madeleine was pretty agitated and our nurse just chalked it up to too many new things in one day. Once back in the isolet, she calmed down and rested all night long. We're on our way to the hospital this morning but wanted to send out this video.
Sunday, March 23, 2008
Easter Blessing
First-- so I don't forget, I've finally gotten more photos uploaded to snapshttp://www1.snapfish.com/thumbnailshare/AlbumID=186529629/a=13247378_13247378/t_=13247378 fish- the new ones are at the bottom of the album. Kirsten and I will do a better job or organizing photos but we got some good ones yesterday (perhaps the best one is at the top of this post.)
Okay, with photos out of the way, let me get to the great news that we received this morning. Madeleine continues to amaze her doctors, nurses, and parents. As a recap from yesterday (sorry for no post-- I was just too tired), she is completely off dopamine (blood pressure) and morphine (pain). Additionally, last night they removed the line from her stomach that was pumping out all of the bile and have added a colostomy bag to her ostomy (the small intestines currently outside of her skin). This is great news because it allows the doctors to monitor how her body processes bile and if Madeleine demonstrates the ability to process bile, the doctors will clear her to feed in 2-3 days!!! Madeleine's last day for antibiotics is tomorrow. Additionally, they've removed the previous nasal canula (called Vapotherm) and have replaced with a lower pressure canula. She still isn't recieving any oxygen and the nurse thinks that the canula will be completely removed in the next few days-- she said Madeleine keeps pulling it out and doesn't appear to need it. Further good news, they hope to remove the arterial line on her foot-- reducing one port of entry for infection. I know this is a lot of new information so let me give you a quick summary: by mid-week of this week, Madeleine should only have one invasive line (her pic line) that will only provide nutrition via IV. She should begin feeding on breast milk at this same time and the only other lines attached should be the normal NICU monitors!
Needless to say, we've already had our best Easter ever-- and we haven't even been to the hospital to hold her yet. Here's the one disclaimer-- she's made such great progress that we're elated but also expecting some setbacks in the next few days. I can't predict what the setback would be but we know from previous experience in the NICU that most progress is tempered with setbacks. Still, we can't help but rejoice today. Please enjoy the pictures, rejoice in Easter, and have a great day-- thanks again for all your support.
Brent and Kirsten
Friday, March 21, 2008
3/21 Dad's Touch
For those reading the blog that know me well, you know that I'm extremely humble and would never brag on myself. You'd also know that I'm lying through my teeth right now.... so just take the next story with a grain of salt.
Kirsten and I showed up this morning and Madeleine was sleeping very peacefully-- it was pretty great to see. We met with the doctors-- it was good and details are below-- and then Kirsten went to go pump (there is a separate room in the NICU for breastpumping.) With Kirsten's exit, the feisty side of Madeleine came out as the nurse changed her diaper. Madeleine doesn't have fully developed lungs yet but she did her best to tell her dad and her nurse how upset she was to be disturbed. Upon finishing the diaper changing, the nurse said that I could hold her and I promptly took her out of the isolet, cords and all. The nurse had a near heart attack as this was my first time holding her at Children's-- she was unaware that I held her a bunch while Madeleine was still at Holy Cross. They typcially prefer to hand the baby to new parents as they are concerned about all of the cords getting ripped off. In any case, when I picked her up, Madeleine was in full fledged scream mode but before I could even sit down, she immediately snuggled up against my chest and began sleeping peacefully. The flustered nurse took one look at the two of us and said "I think you've got this dad thing down."
Alright, enough bragging on me, let me get back to bragging on my daughter and wife. I'll start with my wife. Kirsten is going to kill me for putting this out on the blog, but today, she wore her pre-pregnancy jeans to the NICU. She's feeling really good, looks even better, and continues to be my emotional rock. I've always been amazed by my wife (that's why I married her) but her ability to handle everything that has been thrown at her and to carry me when I'm struggling has taken my love and admiration much higher. Simple put, I'm lucky beyond any measure.
Now to the one that you came onto the blog to read about. Madeleiene continues to have good days. As mentioned previously, she is feisty and alternates between sleeping soundly and kicking and screaming-- all good signs. Here are some specific short-term medical goals: (Remember that all can change at the drop of the hat in the NICU.)
- Morphine drip: They hope to remove by Sunday 3/23. Madeleine is already on the lowest amount they can give her and is doing fine.
- Dopamine: They hope to be done early next week. She's at 6 right now-- once she gets to 5, they'll consider taking her off completely. Goal: next Friday, 3/28.
- Hydrocortisone: This is a steroids shot that they give her to help wean off dopamine. They hope to be done by 3/31.
- Antibiotics: We had the timeframe incorrect. Her last day for antibiotics-- assuming there are no signs of infection-- is Monday, March 24.
- Breathing Nasal Canula-- Madeleine is not getting oxygen, she's only get extra pressure to ensure that she breathes fully. She has been weaned to six (don't know the metric) and they expect to slowly come down. They don't really care when she's done but probably around 3/31.
- Feeding: If the doctors stick to the deadlines listed above, she should be free of all lines except her IV and regular monitors by 3/31. This coincides with the 2 week post-surgery date for feeding to begin. We've been cautioned that feeding will go much slower than it did at Holy Cross. They expect to start with one cc (that's about one tear drop) and will add perhaps a half cc each day. Previously at Holy Cross, they added three cc's every day.
We'll cross our fingers that she meets all of these goals. If not, it isn't that big of a deal-- these goals just help me project out where we're heading and what the next milestones are.
That's pretty much all we know right now and hopefully all that we need to know for the next two weeks. In terms of recovery from surgery, Dr. Baumgart is very happy-- he reiterated that her recovery is unbelievable. With that being said, he did try to temper our expectations. (Temper might not be fair, he just wanted to make sure we understand the challenges in front of us.) Assuming that Madeleine begins feeding on April 1, the doctors will then need to determine what surgery is next-- the intestinal reattachment or the AV channel in the heart. The doctors would prefer to re-attach her intestines and to hold off on the heart until she is at least 4-6 months old and, at this time, that is our game plan. The doctor did say that given Madeleine's quick recovery, all signs currently point to this being likely. With that being said, he cautioned that as Madeleine grows in the next few weeks, her heart may cause issues that hamper her growth and ability to breathe freely. In three weeks (at the ripe age of 6 weeks) the doctor hopes to have enough evidence where he can make plans to schedule the intestinal surgery. If that happens, it will mean that Madeleine is processing food and is putting on weight. If either of these issues fail to occur, then the doctors will re-assess and consider if it is necessary to fix her heart. Again, all signs indicate that her heart is doing well and despite missing the center valve, her heart seems strong and is fully balanced. Still, the doctor cautioned that each heart is unique and the true impact of missing the AV valve cannot be accurately predicted. At six weeks of age, he feels he will have enough data to determine what makes most sense. The ultimate concern is that they don't want to have to schedule both of these surgeries back to back. Both surgeries are major surgeries, especially for anyone Madeleine's size, and we want to make sure that the heart is functioning properly before moving forward with any other surgeries.
Okay, I've definitely written enough for one post. I've gotten tons of questions about the impact of missing the large intestines and I'll try to address that in a post in the near future. (Short answer: it sounds worse that it actually is.) For the time being, Madeleine is doing great and her parents are learning to rejoice in the small victories every day. Today, I held my daughter. Today is a great day.
Have a great weekend and a joyous Easter.
Brent and Kirsten
Kirsten and I showed up this morning and Madeleine was sleeping very peacefully-- it was pretty great to see. We met with the doctors-- it was good and details are below-- and then Kirsten went to go pump (there is a separate room in the NICU for breastpumping.) With Kirsten's exit, the feisty side of Madeleine came out as the nurse changed her diaper. Madeleine doesn't have fully developed lungs yet but she did her best to tell her dad and her nurse how upset she was to be disturbed. Upon finishing the diaper changing, the nurse said that I could hold her and I promptly took her out of the isolet, cords and all. The nurse had a near heart attack as this was my first time holding her at Children's-- she was unaware that I held her a bunch while Madeleine was still at Holy Cross. They typcially prefer to hand the baby to new parents as they are concerned about all of the cords getting ripped off. In any case, when I picked her up, Madeleine was in full fledged scream mode but before I could even sit down, she immediately snuggled up against my chest and began sleeping peacefully. The flustered nurse took one look at the two of us and said "I think you've got this dad thing down."
Alright, enough bragging on me, let me get back to bragging on my daughter and wife. I'll start with my wife. Kirsten is going to kill me for putting this out on the blog, but today, she wore her pre-pregnancy jeans to the NICU. She's feeling really good, looks even better, and continues to be my emotional rock. I've always been amazed by my wife (that's why I married her) but her ability to handle everything that has been thrown at her and to carry me when I'm struggling has taken my love and admiration much higher. Simple put, I'm lucky beyond any measure.
Now to the one that you came onto the blog to read about. Madeleiene continues to have good days. As mentioned previously, she is feisty and alternates between sleeping soundly and kicking and screaming-- all good signs. Here are some specific short-term medical goals: (Remember that all can change at the drop of the hat in the NICU.)
- Morphine drip: They hope to remove by Sunday 3/23. Madeleine is already on the lowest amount they can give her and is doing fine.
- Dopamine: They hope to be done early next week. She's at 6 right now-- once she gets to 5, they'll consider taking her off completely. Goal: next Friday, 3/28.
- Hydrocortisone: This is a steroids shot that they give her to help wean off dopamine. They hope to be done by 3/31.
- Antibiotics: We had the timeframe incorrect. Her last day for antibiotics-- assuming there are no signs of infection-- is Monday, March 24.
- Breathing Nasal Canula-- Madeleine is not getting oxygen, she's only get extra pressure to ensure that she breathes fully. She has been weaned to six (don't know the metric) and they expect to slowly come down. They don't really care when she's done but probably around 3/31.
- Feeding: If the doctors stick to the deadlines listed above, she should be free of all lines except her IV and regular monitors by 3/31. This coincides with the 2 week post-surgery date for feeding to begin. We've been cautioned that feeding will go much slower than it did at Holy Cross. They expect to start with one cc (that's about one tear drop) and will add perhaps a half cc each day. Previously at Holy Cross, they added three cc's every day.
We'll cross our fingers that she meets all of these goals. If not, it isn't that big of a deal-- these goals just help me project out where we're heading and what the next milestones are.
That's pretty much all we know right now and hopefully all that we need to know for the next two weeks. In terms of recovery from surgery, Dr. Baumgart is very happy-- he reiterated that her recovery is unbelievable. With that being said, he did try to temper our expectations. (Temper might not be fair, he just wanted to make sure we understand the challenges in front of us.) Assuming that Madeleine begins feeding on April 1, the doctors will then need to determine what surgery is next-- the intestinal reattachment or the AV channel in the heart. The doctors would prefer to re-attach her intestines and to hold off on the heart until she is at least 4-6 months old and, at this time, that is our game plan. The doctor did say that given Madeleine's quick recovery, all signs currently point to this being likely. With that being said, he cautioned that as Madeleine grows in the next few weeks, her heart may cause issues that hamper her growth and ability to breathe freely. In three weeks (at the ripe age of 6 weeks) the doctor hopes to have enough evidence where he can make plans to schedule the intestinal surgery. If that happens, it will mean that Madeleine is processing food and is putting on weight. If either of these issues fail to occur, then the doctors will re-assess and consider if it is necessary to fix her heart. Again, all signs indicate that her heart is doing well and despite missing the center valve, her heart seems strong and is fully balanced. Still, the doctor cautioned that each heart is unique and the true impact of missing the AV valve cannot be accurately predicted. At six weeks of age, he feels he will have enough data to determine what makes most sense. The ultimate concern is that they don't want to have to schedule both of these surgeries back to back. Both surgeries are major surgeries, especially for anyone Madeleine's size, and we want to make sure that the heart is functioning properly before moving forward with any other surgeries.
Okay, I've definitely written enough for one post. I've gotten tons of questions about the impact of missing the large intestines and I'll try to address that in a post in the near future. (Short answer: it sounds worse that it actually is.) For the time being, Madeleine is doing great and her parents are learning to rejoice in the small victories every day. Today, I held my daughter. Today is a great day.
Have a great weekend and a joyous Easter.
Brent and Kirsten
Thursday, March 20, 2008
3/20 A Kicking Machine
We spent a few hours this morning with Madeleine and she seems back to her normal self. The nurses are back to complaining about her kicking off the various monitors and she's very stable. She does have some breathing assistance via her nose and this is standard protocol for babies when they are extubated. As you might expect, Madeleine doesn't like the canula (sp?) at all and is doing her best to rip it out. The doctors are hoping that she can be slowly weaned off the breathing assistance while the continue weaning from dopamine-- their basic goal is to have these gone by some time next week. After that, we still have 12 more days of antibiotics and they'll then start considering the re-introduction of food. All in all, it looks like a slow but promising recovery road.
That's it-- I'm back at work so I need to get cracking. Have a good day-- more pics later tonight.
Brent
That's it-- I'm back at work so I need to get cracking. Have a good day-- more pics later tonight.
Brent
Wednesday, March 19, 2008
3/19 A Really Good Day
This blog comes with same disclaimer as yesterday-- Madeleiene is still in the NICU and we can expect some difficult days ahead.
With the disclaimer out of the way, the news is even better than yesterday. As of 3PM today, Madeleine is breathing on her own. The doctors were quite sure that she shouldn't be extubated until Friday but when they showed up bedside and saw her trying to pull it out this afternoon while kicking her legs in the air (yes, she's feisty again), they had no choice. The attending neonatologist, Dr. Baumgart, said that Madeleine's recovery from surgery is "unbelievable."
Not a bad day, eh? There's not much else to report except good news. (That's right, there's no bad news in the posting.) There are still no signs of infection, they are slowly weaning Madeleine off dopamine (the blood pressure medicine) and she's back to kicking and ripping off her various monitors (she is Daddy's little girl.)
With this good news, the game plan gets pretty simple for the next few weeks. The first concern is still infection and they'll continue to monitor her blood, temperature, and other vital signs on a regular basis. They're feeding her via her IV for the time being and will do this for atleast 10-12 more days. At that point, they'll consider reintroducing food, but its not going to be a large amount and they will increase feeding very slowly. Translated: we're just hoping for a bunch of boring days in a row with very few tests and/or concerns.
All of the same hurdles remain for Madeleine-- infection, IVH (very unlikely), ROP (probably the scariest issue on the table), and she also has to have surgery down the line to reattach the small intestines to her rectum. They'll continue to monitor her heart, her brain, and pretty much everything else to see if any bad things come up... While all of this is true, these are concerns for another day. Today is truly a joyous day and we know that its possible only through the prayers and support of others. If you're reading this, pat yourself on your back because this is a big step forward and we couldn't have gotten here without you-- THANK YOU! Have a great night.
B&K
With the disclaimer out of the way, the news is even better than yesterday. As of 3PM today, Madeleine is breathing on her own. The doctors were quite sure that she shouldn't be extubated until Friday but when they showed up bedside and saw her trying to pull it out this afternoon while kicking her legs in the air (yes, she's feisty again), they had no choice. The attending neonatologist, Dr. Baumgart, said that Madeleine's recovery from surgery is "unbelievable."
Not a bad day, eh? There's not much else to report except good news. (That's right, there's no bad news in the posting.) There are still no signs of infection, they are slowly weaning Madeleine off dopamine (the blood pressure medicine) and she's back to kicking and ripping off her various monitors (she is Daddy's little girl.)
With this good news, the game plan gets pretty simple for the next few weeks. The first concern is still infection and they'll continue to monitor her blood, temperature, and other vital signs on a regular basis. They're feeding her via her IV for the time being and will do this for atleast 10-12 more days. At that point, they'll consider reintroducing food, but its not going to be a large amount and they will increase feeding very slowly. Translated: we're just hoping for a bunch of boring days in a row with very few tests and/or concerns.
All of the same hurdles remain for Madeleine-- infection, IVH (very unlikely), ROP (probably the scariest issue on the table), and she also has to have surgery down the line to reattach the small intestines to her rectum. They'll continue to monitor her heart, her brain, and pretty much everything else to see if any bad things come up... While all of this is true, these are concerns for another day. Today is truly a joyous day and we know that its possible only through the prayers and support of others. If you're reading this, pat yourself on your back because this is a big step forward and we couldn't have gotten here without you-- THANK YOU! Have a great night.
B&K
Tuesday, March 18, 2008
3/18 Another Good Report
This is a disclaimer for this message: The NICU is a roller coaster ride and we know that difficult days lie ahead.
Okay, with that disclaimer out of the way, we're having a very good day in the NICU. Here's the run down from our meetings with the various doctors and nurses:
1) The heart is indeed doing much better. The cardiologist confirmed this morning that the PDA is closed-- not slightly open-- so this is great news. There is always a chance it could re-open but they think that the surgery caused this the last time. Barring any other surgeries-- and there are none planned in the short term-- we're cautiously optimistic that this won't be an issue. Additionally, the cardiologists at Children's talked with the cardiologists from Holy Cross and they are convinced right now that the clot-- they now call it a thrombis-- is stable and should continue to decrease over time. In a while-- don't know a specific timeframe-- they may suggest aspirin to help it dissolve but right now, they don't think it is a major concern. Of course, Madeleiene will need surgery for her AV canal but we're talking months (probably 4-6 mos at a minimum) until any such surgery would take place. That "phew" sound you heard in the DC area was a collective sigh from Kirsten and myself. Madeleine will have weekly echocardiagrams to monitor to heart issues but right now, we're not expecting anything further.
2) We've passed the 72 hour surgery recovery window and there is no sign of infection. This is great news. Of course, there is always a concern for infection in any NICU child-- any child for that matter-- but right now, the doctors don't see any signs and are very happy. They decided this morning to keep Madeleine on antibiotics for the next 14 days-- just as a precaution given the large surgery-- but they're hoping that these can be discontinued after two more weeks.
3) We discussed with the doctors the process for extubation. At this point, Madeleine is breathing room air (no oxygen) and is breating, for the most part, over the vent meaning that her body is doing more work than the respirator. She is still on dopamine for her blood pressure and given the proximity of surgery, they prefer to wait a day or two more before they extubate. They'll reevaluate this decision tomorrow but right now, we're hoping that she is extubated by Friday. This would be yet another step forward so we're cautiously optimistic.
4) We asked about any further issues with NEC and right now, given Madeleine's strong recovery, they are cautiously optimistic that the NEC is over. We'll know more when we can gauge Madeleine's reaction when she begins feeding but, given the severity of Madeleine's NEC and the importance of keeping her stable, they're not going to reintroduce food for at least two more weeks.
5) The intraventricular hemorraging (IVH-- brain bleeds) are also decreased as the brain scan conducted yesterday showed that the bleed itself has stopped and the benign cyst has decreased in size. At this point, they'll continue to monitor with weekly brain scans but the doctors are cautiously optimistic that she has passed any further concern for IVH.
6) We raised the issue of Retinopathy of Prematurity (ROP-- eye issues with premies) and the doctor explained that this is caused by over-oxygenition for a premature baby. (I was mistaken when I wrote that early introduction of light causes the problem.) Since Madeleine has only received minimal levels of oxygen, the doctors don't believe this will be an issue but all premies are tested for it and Madeleine is scheduled to be tested next Tuesday. The doctor explained that 30% of all premies in the NICU have some form of ROP, with the most severe 5% receiving laser treatments to correct the problem. We're hoping Madeleine, for a change, hangs out in the majority group and we'll find out more next week.
That's it for right now. In case you're keeping score at home, there is no bad news for today. Again, its the NICU so we're trying not to get too happy/far ahead of ourselves. At the same time, we kinda enjoy feeling good and today is definitely a feel good day. I'm going to post this blog right now and when I get the camera from Kirsten, I'll try to post some pictures-- we got some good ones today.
Have a great day!
Brent and Kirsten
PS-- We must say thank you to all of you that have been praying, thinking of us, and/or supporting us in other ways. The list is too numerous for me to thank all but I'll send a few specific thank yous: Dawn-- the turkey ziti is delicious and we're looking forward to a few more lunches of it. (the cafeteria food isn't too hot.) Emma-- thanks for knitting the hats. You'll all see the pictures of Madeleine with her new pink hat. Steve, Becky, and Chuck-- you guys were great last Saturday night helping us get through a few difficult hours. Everyone else that has posted-- thanks as well. Your support and friendship continues to humble us.
Okay, with that disclaimer out of the way, we're having a very good day in the NICU. Here's the run down from our meetings with the various doctors and nurses:
1) The heart is indeed doing much better. The cardiologist confirmed this morning that the PDA is closed-- not slightly open-- so this is great news. There is always a chance it could re-open but they think that the surgery caused this the last time. Barring any other surgeries-- and there are none planned in the short term-- we're cautiously optimistic that this won't be an issue. Additionally, the cardiologists at Children's talked with the cardiologists from Holy Cross and they are convinced right now that the clot-- they now call it a thrombis-- is stable and should continue to decrease over time. In a while-- don't know a specific timeframe-- they may suggest aspirin to help it dissolve but right now, they don't think it is a major concern. Of course, Madeleiene will need surgery for her AV canal but we're talking months (probably 4-6 mos at a minimum) until any such surgery would take place. That "phew" sound you heard in the DC area was a collective sigh from Kirsten and myself. Madeleine will have weekly echocardiagrams to monitor to heart issues but right now, we're not expecting anything further.
2) We've passed the 72 hour surgery recovery window and there is no sign of infection. This is great news. Of course, there is always a concern for infection in any NICU child-- any child for that matter-- but right now, the doctors don't see any signs and are very happy. They decided this morning to keep Madeleine on antibiotics for the next 14 days-- just as a precaution given the large surgery-- but they're hoping that these can be discontinued after two more weeks.
3) We discussed with the doctors the process for extubation. At this point, Madeleine is breathing room air (no oxygen) and is breating, for the most part, over the vent meaning that her body is doing more work than the respirator. She is still on dopamine for her blood pressure and given the proximity of surgery, they prefer to wait a day or two more before they extubate. They'll reevaluate this decision tomorrow but right now, we're hoping that she is extubated by Friday. This would be yet another step forward so we're cautiously optimistic.
4) We asked about any further issues with NEC and right now, given Madeleine's strong recovery, they are cautiously optimistic that the NEC is over. We'll know more when we can gauge Madeleine's reaction when she begins feeding but, given the severity of Madeleine's NEC and the importance of keeping her stable, they're not going to reintroduce food for at least two more weeks.
5) The intraventricular hemorraging (IVH-- brain bleeds) are also decreased as the brain scan conducted yesterday showed that the bleed itself has stopped and the benign cyst has decreased in size. At this point, they'll continue to monitor with weekly brain scans but the doctors are cautiously optimistic that she has passed any further concern for IVH.
6) We raised the issue of Retinopathy of Prematurity (ROP-- eye issues with premies) and the doctor explained that this is caused by over-oxygenition for a premature baby. (I was mistaken when I wrote that early introduction of light causes the problem.) Since Madeleine has only received minimal levels of oxygen, the doctors don't believe this will be an issue but all premies are tested for it and Madeleine is scheduled to be tested next Tuesday. The doctor explained that 30% of all premies in the NICU have some form of ROP, with the most severe 5% receiving laser treatments to correct the problem. We're hoping Madeleine, for a change, hangs out in the majority group and we'll find out more next week.
That's it for right now. In case you're keeping score at home, there is no bad news for today. Again, its the NICU so we're trying not to get too happy/far ahead of ourselves. At the same time, we kinda enjoy feeling good and today is definitely a feel good day. I'm going to post this blog right now and when I get the camera from Kirsten, I'll try to post some pictures-- we got some good ones today.
Have a great day!
Brent and Kirsten
PS-- We must say thank you to all of you that have been praying, thinking of us, and/or supporting us in other ways. The list is too numerous for me to thank all but I'll send a few specific thank yous: Dawn-- the turkey ziti is delicious and we're looking forward to a few more lunches of it. (the cafeteria food isn't too hot.) Emma-- thanks for knitting the hats. You'll all see the pictures of Madeleine with her new pink hat. Steve, Becky, and Chuck-- you guys were great last Saturday night helping us get through a few difficult hours. Everyone else that has posted-- thanks as well. Your support and friendship continues to humble us.
Quick morning update
We're getting ready to go to the hospital but wanted to provide a quick update from last night. We learned last night that the PDA (heart duct) is closed. This is great news as we believe that this removes heart surgery from the table at this time. Madeleine will obviously need to have surgery down the road for her AV canal but it is preferable to do this surgery once she has grown. We haven't confirmed this information with the cardiologists but will meet with them this morning to make sure this is correct. While this is good news, it comes with a word of caution: we were warned last week that it is possible for this duct to open and close repeatedly. If it opens again, it is likely that the cardiologists would consider surgery to minimize the risk of the PDA diverting blood away from the gut area. Regardless of the caution we definitely felt great last night and this is a step forward. We hope to report good and/or boring information later today.
Monday, March 17, 2008
Lots of Information
First things first, Madeleine is still resting peacefully and is recovering well from Saturday morning's surgery. That's the best possible news that we could get and we are extremely pleased to see her progress.
With that in mind, we met with a whole host of doctors and nurses today and we learned a great deal. In no particular order, here's my notes from the day:
1) Infection is still the most important concern and the good news is that, at this point, the Doctors don't see any sign of infection. She is resting peacefully, is not running a fever, is not dependent on the respirator (more on that below), and her blood gas tests are still extremely positive. The attending physician, Dr. Baumgart reported that most preemies have acidic blood readings after surgery and it is a good sign that Madeleine doesn't have this issue. She regressed a little with the weaning from Dopamine as the doctors want to ensure that her blood pressure remains high. Their concern is that her blood pressure must remain high to counteract the diversion of blood caused by her AV channel heart defect and the fact that the PDA is open (as of last Saturday's echocardiagram).
2) The doctors are not focused on removing Madeleine from the ventilator for at least the next few days. They reassured us that Madeleine is on an extremely low setting and could be extubated but the Dcotors prefer to keep her extubated to ensure that Madeleine does not have to worry about breathing. Instead, they want her to be relaxed and comfortable and in a few days, they'll begin to consider extubation. At that point, they will also have a better idea on what heart issues must be addressed.
3) Assuming Madeleine comes through surgery without any further complications, the heart is next focus. We learned on Saturday that her PDA (ductus) was reopened and we're hoping that results of today's echocardiagram (it was completed at 3PM) will demonstrate that the ductus is closed again. This would be great so that we wouldn't have to worry about surgery in the near future. If not, we will need to consider surgery as the open PDA diverts blood away from the gut and puts her at risk of not recovering fully. Further complicating matters, a cardiologist today mentioned that they may consider doing the PDA ligation while also surgically repairing Madeleien's AV channel. In relative terms, the PDA ligation is a minor surgery while the AV channel is a major surgery. One would tend to think that Madeleine is too small for major surgery but the other thought is that if we're going to go through heart surgery, why not knock it all out of the park. I'm obviously not learned enough to make this decision but there is a team of cardiologists and surgeons that are meeting this evening to discuss Madeleine's case. We'll most likely get their recommendation tomorrow morning-- apparently, they make a preliminary decision in the evening and then sleep on it before finalizing the decision the next day. (Try that approach with your boss-- "yeah, I've made a decision but first, I need to mull it over for another day.") While the waiting game isn't a lot of fun, we're sure to get the recommendation tomorrow and can move forward. (All of this discussion is moot if the PDA closes itself. It already closed itself once, so lets hope this happens again.)
4) No heart discussion would be complete without mentioning that troublesome clot. We don't know how it is behaving today and the echocardiagram should let us know. Its probably the most serious hurdle facing Madeleine but the doctors can't do much about it. If they go forward with the AV channel surgery, they would likely remove the clot. Barring that option, we can ask if they would ever consider using a blood thinner. Right now, we don't think this is an option but perhaps in a few weeks, they could re-consider.
5) The gut and the heart are the two main concerns right now but there are a few more things that we discussed with the doctors. (You wouldn't expect Madeleine to make it clear and simple, would ya?) With all premies, the doctors are concerned with brain bleeding (the technical term is intraventricular hemorraging or IVH). Madeleine has had limited IVH as reported a long time ago, she had a Grade 1 brain bleed and cyst. Grade 1 is the smallest type of bleed and is considered medically insignificant. Of course, there is always the chance that such a bleed can increase in size and we're awaiting results of a test taken today to determine any changes.
6) Another problem that all premies face is called Retinopathy of Prematurity or ROP. This is caused by the overdevelopment of retina muscles due to the introduction of light at an earlier stage than in full length pregnancies. In most cases, ROP is fully treatable and many premies don't even get ROP. Our experience has been that Madeleine likes to try out all of the tough premie options so we're just trying to see what could next appear as an issue. The doctors aren't looking for ROP yet-- an opthamologist will most likely analyze Madeleine next week. We're really hoping that we don't have to deal with that issue.
7) NEC (I never thought I'd hate an acronym that much) is also still a concern. It is unlikely, but possible, that NEC could re-occur. That would be extremely rare and even worse news so that's all I will say about a full re-occurence. A more possible option is called stricture where a previously damaged intestinal area restricts itself, essentially getting smaller. Any area that becomes restricted would need to be removed, most likely at the same time that her small intestines is re-attached. We're hopeful that this won't be an issue for Madeleine as the surgeon was confident that all NEC affected areas were removed. Still, its something still on the worry table.
That's about all of the worries that we've documented. Short term, the goal remains pretty simple: Madeleine needs a few more boring days to ensure that she fully recovers from surgery. Once that occurs, we'll need to make a decision about the heart and determine if any surgery is warranted. Once that is done, we'll turn our focus to re-introducing food (probably two weeks away) and we'll deal with any of the issues listed above should they arise. One other note: given all the different doctors and specialists that are focused on Madeleine, we're expecting to schedule a team meeting for the end of the week. Such a meeting will be held to ensure that all doctors are in agreement on the appropriate path forward for Madeleine. If surgery is an immediate option, we'll use this meeting to let all doctors lay their opinion out. We expect to rely on the doctor's expertise but, as the parents, we must consent to any surgery and we want to ensure that all are in agreement with the best path forward.
That's all for now. Kirsten and I are feeling more human and we're beginning to make plans for the long haul. We're both starting to figure out when we'll return to work and hope to start making plans that forecast past the next 24 hours. We're not there yet but we'll get there soon. Enjoy the rest of your St. Patrick's Day!
Brent and Kirsten
With that in mind, we met with a whole host of doctors and nurses today and we learned a great deal. In no particular order, here's my notes from the day:
1) Infection is still the most important concern and the good news is that, at this point, the Doctors don't see any sign of infection. She is resting peacefully, is not running a fever, is not dependent on the respirator (more on that below), and her blood gas tests are still extremely positive. The attending physician, Dr. Baumgart reported that most preemies have acidic blood readings after surgery and it is a good sign that Madeleine doesn't have this issue. She regressed a little with the weaning from Dopamine as the doctors want to ensure that her blood pressure remains high. Their concern is that her blood pressure must remain high to counteract the diversion of blood caused by her AV channel heart defect and the fact that the PDA is open (as of last Saturday's echocardiagram).
2) The doctors are not focused on removing Madeleine from the ventilator for at least the next few days. They reassured us that Madeleine is on an extremely low setting and could be extubated but the Dcotors prefer to keep her extubated to ensure that Madeleine does not have to worry about breathing. Instead, they want her to be relaxed and comfortable and in a few days, they'll begin to consider extubation. At that point, they will also have a better idea on what heart issues must be addressed.
3) Assuming Madeleine comes through surgery without any further complications, the heart is next focus. We learned on Saturday that her PDA (ductus) was reopened and we're hoping that results of today's echocardiagram (it was completed at 3PM) will demonstrate that the ductus is closed again. This would be great so that we wouldn't have to worry about surgery in the near future. If not, we will need to consider surgery as the open PDA diverts blood away from the gut and puts her at risk of not recovering fully. Further complicating matters, a cardiologist today mentioned that they may consider doing the PDA ligation while also surgically repairing Madeleien's AV channel. In relative terms, the PDA ligation is a minor surgery while the AV channel is a major surgery. One would tend to think that Madeleine is too small for major surgery but the other thought is that if we're going to go through heart surgery, why not knock it all out of the park. I'm obviously not learned enough to make this decision but there is a team of cardiologists and surgeons that are meeting this evening to discuss Madeleine's case. We'll most likely get their recommendation tomorrow morning-- apparently, they make a preliminary decision in the evening and then sleep on it before finalizing the decision the next day. (Try that approach with your boss-- "yeah, I've made a decision but first, I need to mull it over for another day.") While the waiting game isn't a lot of fun, we're sure to get the recommendation tomorrow and can move forward. (All of this discussion is moot if the PDA closes itself. It already closed itself once, so lets hope this happens again.)
4) No heart discussion would be complete without mentioning that troublesome clot. We don't know how it is behaving today and the echocardiagram should let us know. Its probably the most serious hurdle facing Madeleine but the doctors can't do much about it. If they go forward with the AV channel surgery, they would likely remove the clot. Barring that option, we can ask if they would ever consider using a blood thinner. Right now, we don't think this is an option but perhaps in a few weeks, they could re-consider.
5) The gut and the heart are the two main concerns right now but there are a few more things that we discussed with the doctors. (You wouldn't expect Madeleine to make it clear and simple, would ya?) With all premies, the doctors are concerned with brain bleeding (the technical term is intraventricular hemorraging or IVH). Madeleine has had limited IVH as reported a long time ago, she had a Grade 1 brain bleed and cyst. Grade 1 is the smallest type of bleed and is considered medically insignificant. Of course, there is always the chance that such a bleed can increase in size and we're awaiting results of a test taken today to determine any changes.
6) Another problem that all premies face is called Retinopathy of Prematurity or ROP. This is caused by the overdevelopment of retina muscles due to the introduction of light at an earlier stage than in full length pregnancies. In most cases, ROP is fully treatable and many premies don't even get ROP. Our experience has been that Madeleine likes to try out all of the tough premie options so we're just trying to see what could next appear as an issue. The doctors aren't looking for ROP yet-- an opthamologist will most likely analyze Madeleine next week. We're really hoping that we don't have to deal with that issue.
7) NEC (I never thought I'd hate an acronym that much) is also still a concern. It is unlikely, but possible, that NEC could re-occur. That would be extremely rare and even worse news so that's all I will say about a full re-occurence. A more possible option is called stricture where a previously damaged intestinal area restricts itself, essentially getting smaller. Any area that becomes restricted would need to be removed, most likely at the same time that her small intestines is re-attached. We're hopeful that this won't be an issue for Madeleine as the surgeon was confident that all NEC affected areas were removed. Still, its something still on the worry table.
That's about all of the worries that we've documented. Short term, the goal remains pretty simple: Madeleine needs a few more boring days to ensure that she fully recovers from surgery. Once that occurs, we'll need to make a decision about the heart and determine if any surgery is warranted. Once that is done, we'll turn our focus to re-introducing food (probably two weeks away) and we'll deal with any of the issues listed above should they arise. One other note: given all the different doctors and specialists that are focused on Madeleine, we're expecting to schedule a team meeting for the end of the week. Such a meeting will be held to ensure that all doctors are in agreement on the appropriate path forward for Madeleine. If surgery is an immediate option, we'll use this meeting to let all doctors lay their opinion out. We expect to rely on the doctor's expertise but, as the parents, we must consent to any surgery and we want to ensure that all are in agreement with the best path forward.
That's all for now. Kirsten and I are feeling more human and we're beginning to make plans for the long haul. We're both starting to figure out when we'll return to work and hope to start making plans that forecast past the next 24 hours. We're not there yet but we'll get there soon. Enjoy the rest of your St. Patrick's Day!
Brent and Kirsten
Sunday, March 16, 2008
A Splendidly Boring Afternoon
We just returned from hanging out bedside with Madeleine this afternoon. As we hoped, it was an uneventful visit. Madeleine is ready to be extubated (the respirator can be removed at any time) and all of her vital signs are strong-- a great indication that there is no serious infection. We didn't meet with any doctors today-- we had the option but decided that there aren't any decisions to make right now. Instead, we're prepared to meet with a whole host of doctors, surgeons, cardiologists and others starting tomorrow morning. At that point, we'll be nearing the end of her critical phase and ideally can turn our focus to the heart issues and can begin discussions of re-introducing food (still at least a week away).
We'll keep you informed of any changes but we're crossing our fingers that our boring afternoon extends into the evening and night... Take care,
B&K
We'll keep you informed of any changes but we're crossing our fingers that our boring afternoon extends into the evening and night... Take care,
B&K
3/16 Everyone's Stable Today
Sorry for the lack of an update yesterday afternoon-- we were exhausted. Things are going much better today. We visited the hospital yesterday afternoon and were extremely impressed by the nurses at Children's. When we left yesterday at 6 in the morning, Madeleine was very pale (to be expected after surgery) and she just didn't look right. When we got there in the afternoon, they had her wrapped up and her color had already returned. In addition, they added a bunny beany baby to sleep next to her (preparation for sleeping with our dog Grady) and the nurse also glued a ribbon to her head (surgical glue-- she was sick of everyone calling her a boy.) Kirsten and I spent over an hour talking with the nurse and at the end of the discussion, she put Kirsten to work, taking Madeleine's temperature, changing her diaper and rubbing her body with lotion-- between the morphine drip and lotion, Madeleine was in hospital spa heaven.
The nurse laid out the game plan for the next few days: first and foremost, they want to avoid infection and are monitoring her constantly for any signs (no signs as of 10:30 this morning.) They consider Madeleine to be in a critical state until 72 hours post surgery so we're not out of the woods yet (but the first 24 hours is the most important, so we do feel a little better...) The other focus is on slowly weaning Madeleine off of the blood pressure medicine (dopamine) and eventually to take her off of the respirator. They weaned her quite a bit yesterday on the dopamine and she is breathing room air through the respirator. At this point, they're mostly stopping the weaning process until we clear the next 48 hours. So, we're essentially back to the same game plan of hoping for a boring few days. Let's hope this works better the second time around.
There is one other piece of data that we'll be following over the next few days-- the heart. Remember back to Friday's post (I can't believe it has only been two days) and the cardiologists were very happy to report that the PDA (duct) was closed and the clot appeared to be decreasing in size. Yesterday, the cardiologist at Children's feared that the PDA was reopened-- this wasn't completely surprising as they explained that the amount of fluid exchange during surgery may have temporarily opened the duct. At this point, they're just going to monitor for the next few days since Madeleine isn't stable enough for surgery. We're obviously hoping that the duct closes on its own but we are happy that if necessary, there is a great surgical team on site at Children's that can address this issue. The other heart issue is the clot-- the previous echo cardiagrams did not travel from Holy Cross with Madeleine so the cardiologists could not confirm that the clot has changed in size. We're hoping it continues to decrease in size and the next few days should help us confirm this hope.
A final quick note about us: sorry if I scared anyone yesterday with my post-- I had a tough day yesterday and I definitely leaned on Kirsten post-surgery. In any case, we spent last night with some good friends and it really helped to act like a normal human being for a few hours. (that is, as normal as I can get) We also slept for about 12 hours-- both Kirsten and I didn't believe the alarm clock this morning-- and we're feeling much better today. We're as confident as ever that Madeleine's going to conquer all of her challenges and we're slowly learning that while taking each day one at a time, this is going to be a marathon adventure. There are definitely going to be some long days but between Madeleiene's resiliency and the tremendous support of family and friends, we're feeling really good. Have a relaxing end to the weekend and keep us in your thoughts and prayers.
Brent and Kirsten
The nurse laid out the game plan for the next few days: first and foremost, they want to avoid infection and are monitoring her constantly for any signs (no signs as of 10:30 this morning.) They consider Madeleine to be in a critical state until 72 hours post surgery so we're not out of the woods yet (but the first 24 hours is the most important, so we do feel a little better...) The other focus is on slowly weaning Madeleine off of the blood pressure medicine (dopamine) and eventually to take her off of the respirator. They weaned her quite a bit yesterday on the dopamine and she is breathing room air through the respirator. At this point, they're mostly stopping the weaning process until we clear the next 48 hours. So, we're essentially back to the same game plan of hoping for a boring few days. Let's hope this works better the second time around.
There is one other piece of data that we'll be following over the next few days-- the heart. Remember back to Friday's post (I can't believe it has only been two days) and the cardiologists were very happy to report that the PDA (duct) was closed and the clot appeared to be decreasing in size. Yesterday, the cardiologist at Children's feared that the PDA was reopened-- this wasn't completely surprising as they explained that the amount of fluid exchange during surgery may have temporarily opened the duct. At this point, they're just going to monitor for the next few days since Madeleine isn't stable enough for surgery. We're obviously hoping that the duct closes on its own but we are happy that if necessary, there is a great surgical team on site at Children's that can address this issue. The other heart issue is the clot-- the previous echo cardiagrams did not travel from Holy Cross with Madeleine so the cardiologists could not confirm that the clot has changed in size. We're hoping it continues to decrease in size and the next few days should help us confirm this hope.
A final quick note about us: sorry if I scared anyone yesterday with my post-- I had a tough day yesterday and I definitely leaned on Kirsten post-surgery. In any case, we spent last night with some good friends and it really helped to act like a normal human being for a few hours. (that is, as normal as I can get) We also slept for about 12 hours-- both Kirsten and I didn't believe the alarm clock this morning-- and we're feeling much better today. We're as confident as ever that Madeleine's going to conquer all of her challenges and we're slowly learning that while taking each day one at a time, this is going to be a marathon adventure. There are definitely going to be some long days but between Madeleiene's resiliency and the tremendous support of family and friends, we're feeling really good. Have a relaxing end to the weekend and keep us in your thoughts and prayers.
Brent and Kirsten
Saturday, March 15, 2008
3/15 Successful Surgery
I thought about titling this entry "Beware the Ides of March" but thought the chosen title was more appropriate. Yes-- you're reading that right. Madeleine was transferred last night to Children's Hospital in DC as Dr. Lotze at Holy Cross was convinced that surgery was a likely option and she didn't want to delay the transfer any further. Make no mistake about it: this decision likely saved Madeleine's life and is yet another blessing we've received. Kirsten and I showed up at Children's around 10:30 last night and were told that we shouldn't expect much changes in Madeleine's care over the weekend as the doctors intended to monitor her condition to determine when surgery should be conducted. At a little past Midnight, we were getting ready to go home for sleep when the attending surgeon, Dr. Chahine, stopped by to examine Madeleine and to review her X-Rays. Much to our surprise, Dr. Chahine told us that he wanted to operate immediately. He explained that it was an extremely complicated decision and while he respected the previous decisions to hold off on surgery, he feared that waiting provided few benefits-- he was convinced that at least a small portion of the intestines was damaged beyond repair-- and the negative side of waiting posed a huge risk of infection. Kirsten and I were initially skeptical of this decision but after a lengthy discussion, Dr. Chahine convinced us that his argument made sense. He essentially argued that Madeleine was as stable as she was going to get last night and that while waiting might have allowed them to learn more and better prepare for surgery, he couldn't predict a tipping point where a potential infection and/or heart issues would make the intestinal surgery more risky and/or impossible. Faced with these choices, we agreed with Dr. Chahine's decision to operate last night.
This was the second lucky decision of the night as the surgery revealed that Madeleine's entire lower intestines were damaged beyond repair and needed to be removed immediately. This removal sounds (and is) pretty major and honestly, we're still trying to determine the long-term impacts of this removal. While there is no doubt that this presents future challenges, we're convinced that Dr. Chahine saved Madeleine's life last night and we can't help feeling extremely lucky.
In any case, we just wanted to get a note out to everyone so that you're up to date. We should let you know that while Madeleine is stable right now, this surgery poses a large infection risk and we've been warned that for the next 48-72 hours, Madeleine will be in a critical state. We're confident in her ability to recover but know this is a going to be a very lengthy recovery-- the initial diagnosis is that she'll be hospitalized in the NICU through June or July. They don't know if this is accurate but they wanted us to be prepared for the months ahead. On a brighter note, the doctor was absolutely convinced that
I'm sure many will ask how we're doing, so let me address that question before signing off. Madeleine is doing as well as can be expected-- the nurses have already begun describing her as "feisty" without her prompting. (seriously) Kirsten is a rock-- she absolutely amazes me. I won't lie about my condition-- this new dad is having some serious emotional issues-- I held up okay through surgery but I'm near a nervous breakdown right now... this dad stuff isn't near as easy as TV portrays it.
Have a good day-- please enjoy the weather and keep our little girl in your thoughts and prayers....
B & K
This was the second lucky decision of the night as the surgery revealed that Madeleine's entire lower intestines were damaged beyond repair and needed to be removed immediately. This removal sounds (and is) pretty major and honestly, we're still trying to determine the long-term impacts of this removal. While there is no doubt that this presents future challenges, we're convinced that Dr. Chahine saved Madeleine's life last night and we can't help feeling extremely lucky.
In any case, we just wanted to get a note out to everyone so that you're up to date. We should let you know that while Madeleine is stable right now, this surgery poses a large infection risk and we've been warned that for the next 48-72 hours, Madeleine will be in a critical state. We're confident in her ability to recover but know this is a going to be a very lengthy recovery-- the initial diagnosis is that she'll be hospitalized in the NICU through June or July. They don't know if this is accurate but they wanted us to be prepared for the months ahead. On a brighter note, the doctor was absolutely convinced that
I'm sure many will ask how we're doing, so let me address that question before signing off. Madeleine is doing as well as can be expected-- the nurses have already begun describing her as "feisty" without her prompting. (seriously) Kirsten is a rock-- she absolutely amazes me. I won't lie about my condition-- this new dad is having some serious emotional issues-- I held up okay through surgery but I'm near a nervous breakdown right now... this dad stuff isn't near as easy as TV portrays it.
Have a good day-- please enjoy the weather and keep our little girl in your thoughts and prayers....
B & K
Friday, March 14, 2008
3/14 Better Afternoon
Note-- the time stamp is incorrect on this post-- please see below for the most recent post. I've corrected this problem so it won't come up again.
We don't have an update on the intestines and right now, that's a good thing. The Doctors are able to monitor three signs for trouble: how does she look? How is her bllod doing? And what does the X-Ray show? The first two have not changed in the past few days and that is good news. They've moved the X-Rays back to every 12 hours so the next one is later this evening. Ideally the pics will show some improvement but as long as they show no danger signs, the Doctors are content to let Madeleine take care of the issues without surgery.
We did get some good news: the EKG showed that the PDA is still small and may actually be completely sealed. That is good news as it ensures that blood is diverted to Madeleine's intestinal repair. Even better, the EKG showed that the clot has decreased slightly in size. The doctors are cautiously optimistic that this trend will continue and Madeleine's body will slowly dissolve and absorb the clot.
So... The consensus here is that we're not out of the woods, especially with the NEC issues, but we're moving in the right direction.
Brent
We don't have an update on the intestines and right now, that's a good thing. The Doctors are able to monitor three signs for trouble: how does she look? How is her bllod doing? And what does the X-Ray show? The first two have not changed in the past few days and that is good news. They've moved the X-Rays back to every 12 hours so the next one is later this evening. Ideally the pics will show some improvement but as long as they show no danger signs, the Doctors are content to let Madeleine take care of the issues without surgery.
We did get some good news: the EKG showed that the PDA is still small and may actually be completely sealed. That is good news as it ensures that blood is diverted to Madeleine's intestinal repair. Even better, the EKG showed that the clot has decreased slightly in size. The doctors are cautiously optimistic that this trend will continue and Madeleine's body will slowly dissolve and absorb the clot.
So... The consensus here is that we're not out of the woods, especially with the NEC issues, but we're moving in the right direction.
Brent
3/14 Evening-- Change of Plans... Again
After further discussion, the doctors have decided to move Madeleine to Children's Hospital in DC. The lead neonatologist, Dr. Lotze, was concerned by the fact that Madeleine continues to burn through platelets and feels that surgery is likely. Given this decision, we've all agreed that it is best to transfer Madeleine as they are unable to conduct this surgery at the Holy Cross facility. We're of mixed emotions right now-- we obviously would prefer to avoid the surgery and we're bummed to be leaving Holy Cross-- they've treated us great. At the same time, it didn't make sense to wait around at Holy Cross any longer given the strong possibility of conducting the surgery.
We are concerned about the surgery but we were reassured that while this is a major surgery, we have plenty of reasons to be hopeful should it be conducted. As we've stated many times, Madeleine continues to be feisty and is much more stable at this point in the week than she was a few days ago. Furthermore, the good news about the heart and clot-- posted earlier today-- leads us to believe that if she has to have surgery, now is the best time.
In any case, we wanted to let everyone know what's going on (that is, everyone that's checking our blog on a Friday night.) We'll try to provide updates tomorrow but know that anything can happen. There's a possibility that the surgeon will decide to operate tonight. On the other hand, the doctors may choose to wait a few days and its all together possible that Madeleine won't have the surgery. In other words, the only thing that is certain is, you guessed it, uncertainty.
Thanks again to everyone that has supported us throughout the past few weeks. We can't say thank you enough. Have a great night.
B&K
We are concerned about the surgery but we were reassured that while this is a major surgery, we have plenty of reasons to be hopeful should it be conducted. As we've stated many times, Madeleine continues to be feisty and is much more stable at this point in the week than she was a few days ago. Furthermore, the good news about the heart and clot-- posted earlier today-- leads us to believe that if she has to have surgery, now is the best time.
In any case, we wanted to let everyone know what's going on (that is, everyone that's checking our blog on a Friday night.) We'll try to provide updates tomorrow but know that anything can happen. There's a possibility that the surgeon will decide to operate tonight. On the other hand, the doctors may choose to wait a few days and its all together possible that Madeleine won't have the surgery. In other words, the only thing that is certain is, you guessed it, uncertainty.
Thanks again to everyone that has supported us throughout the past few weeks. We can't say thank you enough. Have a great night.
B&K
3/14 No Road Trip... Yet
Just a quick post to keep everyone updated. We were told this morning to expect that Madeleine would be transferred to Children's Hospital in DC for surgery on her intestines. The doctors were frustrated that they hadn't seen any change-- nothing is getting worse but they still don't see much change in the X-Rays. Still, they told us that the ultimate decision rests with the surgeon. We just finished meeting with the surgeon and she doesn't feel that surgery is necessary... yet. She explained that with NEC, there are three groups of patients. Some get NEC and once the doctors treat it, they improved quickly. The second group gets NEC and it progresses quickly to the point of needing surgery-- this usually happens within 1-2 days. Our dramatic little girl falls into the third category-- the smallest group-- that improves to the point where surgery isn't quickly needed but where she doesn't fully recuperate. At this point, we're prepared for anything. It is entirely possible that Madeleine will improve on her own and won't need surgery. At the same time, they will monitor her very closely and if she shows any signs of distress-- negative readings in her blood (acidic or poor gasses), discoloring on her belly, or any signs of perferation in the X-Rays, they will immediately ship her for surgery. Sounds like a fun weekend, eh? We'll keep you posted as information comes in. As always, no news is good news. Have a good Friday.
Brent and Kirsten
Brent and Kirsten
Thursday, March 13, 2008
3/13 Afternoon update: Boring wasn't in the cards
Hey all,
Little Madeleine doesn't seem to like the idea of us getting comfortable... not a good sign for the teenage years. We didn't learn bad news today but we learned some new news that may be a sign of concern tomorrow. The head doctor, Dr. Lotze, was out this afternoon and we met with another doctor, Dr. Kessler. Dr. Kessler was actually responsible for diagnosing Madeleine's NEC early Monday morning so she was well aware of the different issues facing Madeleine. She actually showed us the X-Rays that have been taken over the past few days and she noted that the last three X-Rays look almost identical. I'll do my best to explain how they looked: First, let's create a mental image. Think of the anatomy picture on the wall of your 7th grade science class-- in that picture the large intestines were all symettrical and wrapped nice and neatly inside the abdomen. In Madeleine's X-Rays, the large intestines on her left side are enlarged and much more lumpy (yes, that's a technical term) than normal. The inflammation is caused by air in the intestines and a clear sign of improvement would be for the gas to move through the bowels in the different X-Rays. (Yes, passing gas is actually a good thing.) Unfortunately, Ms. Madeleine doesn't seem to be able to pass gas (to think, she's my child?). We're hoping that the evening X-Rays and morning show some signs of movement. If not, we're meeting with the surgeon sometime tomorrow-- we don't know her schedule-- and the doctors will begin to discuss other options. One possible solution is to insert a drain to allow the air to escape in the hope that once the air is removed, Madeleine will be able to repair the inflamed area and continue her road to recovery. Surgery is the other less desirable option and there's always the option of just sitting and waiting for something to happen!
In short-- there's nothing bad to report but some potential signs of difficulty down the road. The truly frustrating part of all this NEC stuff is that the doctors are as confused/frustrated as we are. Dr. Kessler was certain to point out that NEC can change dramatically at any point-- good or bad-- and there really is no way to gauge it. Fun, eh?
In any case, we're going to have some fun tonight and we'll hope for the best. This computer isn't going to be turned on again tonight so don't try to read into the lack of any responses. Have a good one and expect more (good) news tomorrow morning.
Brent
Little Madeleine doesn't seem to like the idea of us getting comfortable... not a good sign for the teenage years. We didn't learn bad news today but we learned some new news that may be a sign of concern tomorrow. The head doctor, Dr. Lotze, was out this afternoon and we met with another doctor, Dr. Kessler. Dr. Kessler was actually responsible for diagnosing Madeleine's NEC early Monday morning so she was well aware of the different issues facing Madeleine. She actually showed us the X-Rays that have been taken over the past few days and she noted that the last three X-Rays look almost identical. I'll do my best to explain how they looked: First, let's create a mental image. Think of the anatomy picture on the wall of your 7th grade science class-- in that picture the large intestines were all symettrical and wrapped nice and neatly inside the abdomen. In Madeleine's X-Rays, the large intestines on her left side are enlarged and much more lumpy (yes, that's a technical term) than normal. The inflammation is caused by air in the intestines and a clear sign of improvement would be for the gas to move through the bowels in the different X-Rays. (Yes, passing gas is actually a good thing.) Unfortunately, Ms. Madeleine doesn't seem to be able to pass gas (to think, she's my child?). We're hoping that the evening X-Rays and morning show some signs of movement. If not, we're meeting with the surgeon sometime tomorrow-- we don't know her schedule-- and the doctors will begin to discuss other options. One possible solution is to insert a drain to allow the air to escape in the hope that once the air is removed, Madeleine will be able to repair the inflamed area and continue her road to recovery. Surgery is the other less desirable option and there's always the option of just sitting and waiting for something to happen!
In short-- there's nothing bad to report but some potential signs of difficulty down the road. The truly frustrating part of all this NEC stuff is that the doctors are as confused/frustrated as we are. Dr. Kessler was certain to point out that NEC can change dramatically at any point-- good or bad-- and there really is no way to gauge it. Fun, eh?
In any case, we're going to have some fun tonight and we'll hope for the best. This computer isn't going to be turned on again tonight so don't try to read into the lack of any responses. Have a good one and expect more (good) news tomorrow morning.
Brent
3/13 Midday Update
All-- the hospital doesn't have wireless but Kirsten has an aircard for her computer and it allows me to provide another good update. As was stated last night, the goal for Thursday is that we're bored to tears. We're not quite bored but not far off. We just finished meeting with the head doctor-- Dr. Lotze and learned that Madeleine has had a near event-less 12 hours. She is resting and comfortable and the last two blood tests and X-Rays (they are scheduled every 8 hours) have shown slight improvements in nearly every category. The one area of slight concern is that Madeleine continues to need platelets. This is an indication that her body is still working hard to repair something but the doctors aren't overly concerned. The more troubling signs including infection and stress levels are simply not apparent and that is great news. One theory is that Madeleine's X-Rays continue to indicate that the lower left side of her intestines is still inflamed and the platelets may be attributed to ongoing repairs in that area. The doctor has told us a number of times that she is a worrier, and she's focused right now on that area. Her hope is that the next few X-Rays will show a decrease in inflammation in this area and this decrease will coincide with a decreased need for platelets. Other than that, we're not expecting much of an update the rest of the day as they simply want Madeleine to rest. They have another EKG scheduled for tomorrow morning and the NEC surgeon will also stop by tomorrow. In other words, if you don't see another update from me, assume the best. Have a great day.
Brent
Brent
Wednesday, March 12, 2008
3/12 Update: A Good Day!
All-- We have good news to report today but before getting to the details, allow me a few administrative details:
1) The hospital doesn't have wireless access for the public so don't expect many posts during the day. Don't worry-- I've already stopped by the customer service office to laud the NICU unit and also suggest that they consider offering wireless support. (yes-- I offered to help install.)
2) If you don't know how to leave a comment on this blog, here are some basic directions. At the bottom of each post, it always says "X comments." Click on the comments and then on the right hand side, you can type a comment. It asks for a google account but if you don't have an account, you can scroll down and check the anonymous button. We just ask you leave your name in the text so we know who's commenting.
Okay, with those details out of the way, here's the update from today-- it's mostly good news. I'll provide the details in the order we learned them.
1) As was stated last night, there was an EKG scheduled for this morning to analyze the PDA (leaky heart duct) and the doctors reported very good news: the duct is much smaller than Monday and is nearly closed. At this time, it doesn't require any type of surgery. (For those keeping score at home-- this was the best scenario laid out in last night's post.) We spoke with the cardiologist later in the day and he was quite pleased by this development. In fact, he told us that prior to stopping by Madeleine's apartment (some call it an isolet), he called the heart surgeon to cancel the surgery scheduled for Thursday (3/13) morning. He did warn us that while the heart duct is nearly closed now, it is fairly common for children with Down's Syndrome to struggle with closing it completely. In some instances, the baby can close the duct where in others, it can reach this stage and stay this way indefinitely. In some other cases, it can even open back up. The good news is that as long as the duct doesn't increase in size, they can wait to close it completely until the more major heart surgery is sheduled down the road (approximately 4-6 months).
2) While the cardiologist reported great news in regard to the PDA, he didn't have all good news. Instead, he identified the same blood clot that was noticed a few days ago. It was hoped that Madeleine had absorbed the clot two days ago when her IV was removed. Instead, it appears that the clot is in the same location and is about the same size as it was last Monday. At this point, the doctors don't know what is going to happen with it. The worst possibility is that the clot could still break free and wreak havoc. Another negative option is that the clot poses a potential risk for infection. Given this risk, they are monitoring Madeleine's blood very closely and at this point, they see no signs of infection. (we pray it stays this way.) The best possibility is that Madeleine's body begin absorbing this clot and we see it slowly disappear. If you're going to pray-- this isn't a bad option to focus on. At this point, there aren't many medical options as the doctors feel it is still too risky to consider blood thinners and she is too fragile for any surgical options.
3) Okay, enough bad news, here's some other good news: the NEC (intestinal inflammation) appears to be decreasing and the doctors believe that this trend should continue. They cautioned that with NEC, anything is possible, but they've seen an improving trend for almost 24 hours and they're hoping that Madeleine has turned the corner. This was probably the best news of the day because this indicates that Madeleine is fighting back and could well be on her way to recovery.
So overall-- this was a very good day for our little girl. With that being said, the doctors were sure to stress that she is by no means out of the woods and when she clears these hurdles, there are still plenty more challenges that lie ahead. Still, we're feeling pretty right now and we think its fair to celebrate our small victories.
The game plan at this point is pretty simple: hope that the NEC continues to improve over the next 48 hours and also hope for the best with the PDA and clot in the heart. The next EKG is scheduled for Friday morning and the intestinal surgeon doesn't plan on seeing Madeleine until Friday (assuming nothing happens tomorrow). Therefore, we have a simple goal for Thursday: we want a boring day with as few doctors involved as possible. :)
In any case, I hope things are going well for everyone out there. We can't stress how much we appreciate everyone's support. We'll keep blogging as we learn more information and look forward to many more positive entries. Have a great night!
B & K
1) The hospital doesn't have wireless access for the public so don't expect many posts during the day. Don't worry-- I've already stopped by the customer service office to laud the NICU unit and also suggest that they consider offering wireless support. (yes-- I offered to help install.)
2) If you don't know how to leave a comment on this blog, here are some basic directions. At the bottom of each post, it always says "X comments." Click on the comments and then on the right hand side, you can type a comment. It asks for a google account but if you don't have an account, you can scroll down and check the anonymous button. We just ask you leave your name in the text so we know who's commenting.
Okay, with those details out of the way, here's the update from today-- it's mostly good news. I'll provide the details in the order we learned them.
1) As was stated last night, there was an EKG scheduled for this morning to analyze the PDA (leaky heart duct) and the doctors reported very good news: the duct is much smaller than Monday and is nearly closed. At this time, it doesn't require any type of surgery. (For those keeping score at home-- this was the best scenario laid out in last night's post.) We spoke with the cardiologist later in the day and he was quite pleased by this development. In fact, he told us that prior to stopping by Madeleine's apartment (some call it an isolet), he called the heart surgeon to cancel the surgery scheduled for Thursday (3/13) morning. He did warn us that while the heart duct is nearly closed now, it is fairly common for children with Down's Syndrome to struggle with closing it completely. In some instances, the baby can close the duct where in others, it can reach this stage and stay this way indefinitely. In some other cases, it can even open back up. The good news is that as long as the duct doesn't increase in size, they can wait to close it completely until the more major heart surgery is sheduled down the road (approximately 4-6 months).
2) While the cardiologist reported great news in regard to the PDA, he didn't have all good news. Instead, he identified the same blood clot that was noticed a few days ago. It was hoped that Madeleine had absorbed the clot two days ago when her IV was removed. Instead, it appears that the clot is in the same location and is about the same size as it was last Monday. At this point, the doctors don't know what is going to happen with it. The worst possibility is that the clot could still break free and wreak havoc. Another negative option is that the clot poses a potential risk for infection. Given this risk, they are monitoring Madeleine's blood very closely and at this point, they see no signs of infection. (we pray it stays this way.) The best possibility is that Madeleine's body begin absorbing this clot and we see it slowly disappear. If you're going to pray-- this isn't a bad option to focus on. At this point, there aren't many medical options as the doctors feel it is still too risky to consider blood thinners and she is too fragile for any surgical options.
3) Okay, enough bad news, here's some other good news: the NEC (intestinal inflammation) appears to be decreasing and the doctors believe that this trend should continue. They cautioned that with NEC, anything is possible, but they've seen an improving trend for almost 24 hours and they're hoping that Madeleine has turned the corner. This was probably the best news of the day because this indicates that Madeleine is fighting back and could well be on her way to recovery.
So overall-- this was a very good day for our little girl. With that being said, the doctors were sure to stress that she is by no means out of the woods and when she clears these hurdles, there are still plenty more challenges that lie ahead. Still, we're feeling pretty right now and we think its fair to celebrate our small victories.
The game plan at this point is pretty simple: hope that the NEC continues to improve over the next 48 hours and also hope for the best with the PDA and clot in the heart. The next EKG is scheduled for Friday morning and the intestinal surgeon doesn't plan on seeing Madeleine until Friday (assuming nothing happens tomorrow). Therefore, we have a simple goal for Thursday: we want a boring day with as few doctors involved as possible. :)
In any case, I hope things are going well for everyone out there. We can't stress how much we appreciate everyone's support. We'll keep blogging as we learn more information and look forward to many more positive entries. Have a great night!
B & K
3/12 Morning update
Good morning all-- after last night's long blogs, I wanted to provide a quick update this morning. First-- I just changed the blog to allow you to leave anonymous posts as it is easier and quicker if you don't have a google account. (by all means, open a google account-- you're welcome Matt Ghering-- but don't do it on our accord) Still, if you choose this option, please write your name in the post so that we know who's leaving messages. We just want to make it as easy as possible for you to comment.
Okay, onto Madeleine. So far so good this morning. The nurses saw some signs of the NEC improving or at least stabilizing so that's a good thing. They are awaiting additional X-Rays and blood updates this morning to confirm that the night was indeed stable and potentially getting better. Additionally, the neonatologist -- Dr. Lotze-- is meeting with a cardiologist this morning. They are going to conduct an EKG and will determine a course of action for the PDA (heart duct issue.) That's all for right now-- we'll know more definite information later this afternoon.
One note from Kirsten-- we don't recommend googling any of this stuff-- its all pretty scary. If you do, please don't tell us. We're relying on our doctors to give us the pertinent information. Sometimes, especially in this Information Age, too much information is definitely bad.
Have a great day.
Kirsten and Brent
Okay, onto Madeleine. So far so good this morning. The nurses saw some signs of the NEC improving or at least stabilizing so that's a good thing. They are awaiting additional X-Rays and blood updates this morning to confirm that the night was indeed stable and potentially getting better. Additionally, the neonatologist -- Dr. Lotze-- is meeting with a cardiologist this morning. They are going to conduct an EKG and will determine a course of action for the PDA (heart duct issue.) That's all for right now-- we'll know more definite information later this afternoon.
One note from Kirsten-- we don't recommend googling any of this stuff-- its all pretty scary. If you do, please don't tell us. We're relying on our doctors to give us the pertinent information. Sometimes, especially in this Information Age, too much information is definitely bad.
Have a great day.
Kirsten and Brent
Your Offers of Support
All-- I've received a number of emails offering support and Kirsten and I can't thank every one enough-- the outpouring of concern is truly humbling. At the same time, I want to let you know that our family is keeping us fat and happy right now. In the next few weeks, we expect this support/feeding to taper off and we'll gladly accept food (can anyone think of a time where Brent missed a meal?) Right now, we're focused on Madeleine and have a full freezer to keep us fed. Thanks again for the offers-- we'll reach out soon. Read below for an update on Madeleine, etc.
Brent
Brent
Tuesday, March 11, 2008
March 11 update
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
Celebration Email
After the original email, we went to the doctor's office on Monday afternoon to conduct the amniocentesis. The short story is that the test was conducted, Madeleine didn't respond well and the doctor said these fateful words "there's no easy way to say this-- you're going to deliver today." Kirsten was put in a wheelchair and little over an hour later, Kirsten and I named our daughter (while Kirsten was still lying on the operating table). Here's the email announcement sent out on March 7, 2007:
All,
I know many of you have been receiving word from various members of our families regarding the status of our little girl Madeleine Eva, the baby formerly known as “Pat” but Brent and I want to send out a status update and some pictures to begin the celebration of the newest (and littlest) member of our family.
It was eight days ago when Brent and I walked into my doctors office that we began to have in inkling that our seemingly easy and run of the mill pregnancy was rapidly turning into anything but run of the mill. Since then we have met with countless specialists in neonatal care, genetics and fetal/maternal medicine. All were amazingly smart and humble as they helped us navigate the tricky waters of a potentially devastating diagnosis. Without rehashing all of the details (we’ll torture you with them in person), we are happy to report two whole days of no new news and the doctors have told us that we should be out of the woods with any other significant diagnoses. Brent and I looked at each other yesterday and realized that this was the first time in a week that our worlds had not been turned on their heads and how odd it was to just have a “normal” day.
Enough about us, let’s get to the good stuff. Madeleine as you may know, was born at a lean 2lbs 9oz. She is a little over 15 inches long, so as you can imagine she is a bit of a string bean. She has a full head of blonde hair and blue eyes. Her little feet seem huge for her body and she is using them as a means to torture all of her nurses as she kicks all of her monitors off day and night. At 31 weeks she does not yet have the ability to suck/swallow so she is being fed by a tube in her mouth. She also has a tube in her belly button so they can provide her with additional nutrition and/or medicine. The doctors are eager to increase the volume of food she receives through her mouth so that the port in her belly can be removed as soon as possible. As benchmarks go in the NICU, this is the first one we are looking forward to hitting. Everyone seems to be smitten with her because one of the primary reasons we had to deliver her early is because she was lethargic and too sleepy in the womb. Now on the outside world the only word used to describe her is ‘feisty’.
In addition to being feisty, the doctors have provided additional confirmation/diagnoses concerning her health. First, they confirmed the AV valve deficiency identified in utero (the valve is missing) and this will require surgery. While this is a serious heart surgery, the cardiologists and other doctors are not focusing on the heart at this time. Instead, given Madeleine’s health, they prefer to let her grow and in a month we will begin to make surgical plans. Further reassuring, the doctors have identified a number of top surgeons in the DC area and have also stated that despite missing the valve, the heart is perfectly shaped (atypical with hearts missing the AV valve) and very strong. The doctors also confirmed earlier this week that Madeleine has Down Syndrome. This was somewhat surprising to the doctors as Madeleine doesn’t display many of the typical Down’s characteristics. While the news was surprising and initially difficult, we are ecstatic at her overall health and firmly believe that this is yet another blessing provided to us.
I will be heading home today while Madeleine will be in the NICU for many weeks if not months to come. While I am a bit sad that our trip home from the hospital is not what I once envisioned, I am thrilled to know that she is getting top notch care and I am eager to spend my days and nights at her bedside watching her grow. Obviously they won’t give us a date of when she will be coming home, however they told us a good rule of thumb is that healthy preemies usually go home on or a little before their due date. Thus, we are thinking she should be home in mid-April/early May if all goes well. Until then, Brent and I will be finishing the nursery and getting ready for our new lives.
Attached are some pictures of the first few days (actually-- see this link: http://www1.snapfish.com/thumbnailshare/AlbumID=186529629/a=13247378_13247378/t_=13247378). She has a bit of jaundice so they put her under lights called bilirubin lights. In order to protect her eyes they put on little sunglasses, thus the laying on the beach look. She HATES the glasses and tears them off or turns them around on her head whenever the nurses aren’t looking. It is tough to capture how tiny she is or have any perspective on the proportion of her little body.
Finally, we want to say thank you to each and every one of you for all the support and love you have sent our way over the past week. Thanks for listening to us when we were scared and listening to us when we have been gushing about how wonderful things have turned out. There is no way Brent and I could have survived the past week without the incredible support of family and friends. We look forward to having each and every one of you in the next chapter of our lives and are eager for Madeleine to woo you the way she has us.
Love,
Kirsten & Brent
All,
I know many of you have been receiving word from various members of our families regarding the status of our little girl Madeleine Eva, the baby formerly known as “Pat” but Brent and I want to send out a status update and some pictures to begin the celebration of the newest (and littlest) member of our family.
It was eight days ago when Brent and I walked into my doctors office that we began to have in inkling that our seemingly easy and run of the mill pregnancy was rapidly turning into anything but run of the mill. Since then we have met with countless specialists in neonatal care, genetics and fetal/maternal medicine. All were amazingly smart and humble as they helped us navigate the tricky waters of a potentially devastating diagnosis. Without rehashing all of the details (we’ll torture you with them in person), we are happy to report two whole days of no new news and the doctors have told us that we should be out of the woods with any other significant diagnoses. Brent and I looked at each other yesterday and realized that this was the first time in a week that our worlds had not been turned on their heads and how odd it was to just have a “normal” day.
Enough about us, let’s get to the good stuff. Madeleine as you may know, was born at a lean 2lbs 9oz. She is a little over 15 inches long, so as you can imagine she is a bit of a string bean. She has a full head of blonde hair and blue eyes. Her little feet seem huge for her body and she is using them as a means to torture all of her nurses as she kicks all of her monitors off day and night. At 31 weeks she does not yet have the ability to suck/swallow so she is being fed by a tube in her mouth. She also has a tube in her belly button so they can provide her with additional nutrition and/or medicine. The doctors are eager to increase the volume of food she receives through her mouth so that the port in her belly can be removed as soon as possible. As benchmarks go in the NICU, this is the first one we are looking forward to hitting. Everyone seems to be smitten with her because one of the primary reasons we had to deliver her early is because she was lethargic and too sleepy in the womb. Now on the outside world the only word used to describe her is ‘feisty’.
In addition to being feisty, the doctors have provided additional confirmation/diagnoses concerning her health. First, they confirmed the AV valve deficiency identified in utero (the valve is missing) and this will require surgery. While this is a serious heart surgery, the cardiologists and other doctors are not focusing on the heart at this time. Instead, given Madeleine’s health, they prefer to let her grow and in a month we will begin to make surgical plans. Further reassuring, the doctors have identified a number of top surgeons in the DC area and have also stated that despite missing the valve, the heart is perfectly shaped (atypical with hearts missing the AV valve) and very strong. The doctors also confirmed earlier this week that Madeleine has Down Syndrome. This was somewhat surprising to the doctors as Madeleine doesn’t display many of the typical Down’s characteristics. While the news was surprising and initially difficult, we are ecstatic at her overall health and firmly believe that this is yet another blessing provided to us.
I will be heading home today while Madeleine will be in the NICU for many weeks if not months to come. While I am a bit sad that our trip home from the hospital is not what I once envisioned, I am thrilled to know that she is getting top notch care and I am eager to spend my days and nights at her bedside watching her grow. Obviously they won’t give us a date of when she will be coming home, however they told us a good rule of thumb is that healthy preemies usually go home on or a little before their due date. Thus, we are thinking she should be home in mid-April/early May if all goes well. Until then, Brent and I will be finishing the nursery and getting ready for our new lives.
Attached are some pictures of the first few days (actually-- see this link: http://www1.snapfish.com/thumbnailshare/AlbumID=186529629/a=13247378_13247378/t_=13247378). She has a bit of jaundice so they put her under lights called bilirubin lights. In order to protect her eyes they put on little sunglasses, thus the laying on the beach look. She HATES the glasses and tears them off or turns them around on her head whenever the nurses aren’t looking. It is tough to capture how tiny she is or have any perspective on the proportion of her little body.
Finally, we want to say thank you to each and every one of you for all the support and love you have sent our way over the past week. Thanks for listening to us when we were scared and listening to us when we have been gushing about how wonderful things have turned out. There is no way Brent and I could have survived the past week without the incredible support of family and friends. We look forward to having each and every one of you in the next chapter of our lives and are eager for Madeleine to woo you the way she has us.
Love,
Kirsten & Brent
Original Status
Most will be familiar with this post, but we're re-posting so that everyone knows how this story begins: (originally sent out on March 3, 2008)
Dear Family and Friends,
As you may or may not know, we learned some difficult news last week concerning our baby and pregnancy. We will begin from the very beginning so bear with us should you have already received some of this information. Brent and I went in for a routine exploratory sonogram on Thursday morning at my primary Maternity doctor’s office. At a visit two weeks prior I had expressed a concern about the fact that I was gaining hardly any weight. At that point my Doctor wasn’t terribly concerned but did think that a sonogram would be a good idea to double check the baby’s growth. The Sonogram on Thursday showed a perfectly symmetrical baby that was about 3.5 weeks behind where it should be growth wise. At that point the doctor suggested we see a specialist immediately who has much more comprehensive technology to help us identify why the baby was not growing at the rate it should be. In our final consultation he said that this is a yellow flag, more than likely something we could handle with a watchful eye. He simply wanted more information to be able to have a handle on the whole picture.
Friday morning, the specialist that determined that the baby was actually only 2.5 weeks behind growth wise and while still concerning, much less so than a baby who was nearing a month behind growth. She also identified three potential areas of concern:
- Weak amniotic flow through the umbilical chord
o Many women’s amniotic sack begins to show signs of nutrient deficiently in the later weeks of the third trimester which while concerning, if presented at 37-38 weeks generally not a concern because the baby has almost everything it needs to survive outside the womb
o My amniotic sac showing signs of depletion is a bit early but very manageable with continuous monitoring of fetal growth and stress levels. As long as baby shows positive growth signs from nutrients received in the womb it can stay in the womb. The moment we see negative trending or stagnant growth, the conversation becomes when the doctors want to take the baby out so they can spur growth in the outside world.
o While the baby could survive at this point, the doctors continue to talk about the most positive outcome would be if the baby could stay in until the 34th to 36th week.
o In order to prepare for the possibility of an early birth I spent the weekend at Sibley hospital receiving steroid shots to give a boost to lung development.
- Heart Valve Defect
o Much of the day on Friday was focused on looking at the heart of the baby. The specialist sent us downstairs to a childhood cardiac specialist who did a 2 hour consultation with us regarding the heart situation. There is an AV Valve defect that is in the congenital heart disease family. It sounds much worse than it actually probably is. There are two little flaps in the baby’s heart that are missing. According to the doctor the treatment for a baby in this situation is a normal birth and then at about 3 -4 months of age the child would go in for heart surgery to install the necessary flaps in order for long term survival. Prior to surgery we would probably see a baby that struggles a bit more to breathe and would need a bit more supervision. However from what we were told the surgery was very low risk and the child would recover from it in 5 -7 days. The doctor said that the baby would probably never be a world class athlete but it would not keep them from being on sports teams.
- Clenched hands
o A baby with a chromosomal disorder is unable to open their hands. Our baby had been poked and prodded for 3 hours prior to them trying to see open hands and thus it was completely balled up in the fetal position not willing to show any body parts. She wasn’t concerned that she didn’t see it, but she said that if we were able to see a full high five hand, it would mean we were out of the dark. On a side note, all of my friends who have children report they have never seen a high five hand on a sonogram and not cause for total alarm.
Prior to going to the heart specialist the doctor’s stance was that if we were able to rule out the heart issue we simply had a small baby with a weak amniotic sack that could be observed and then birthed when it was determined to be not doing so well within the womb.
Unfortunately, we were not able to rule out the heart issue and thus it brings some much larger questions into play- is this a chromosomal issue? Are the causes genetic in base?
The specialist seems to believe that we are trending towards a chromosomal issue – particularly 2 fatal issues called Trisomy 13 and Trisomy 18. Essentially there are three chromosomes instead of two of the 13th chromosome or the 18th chromosome. These types of abnormalities would have been formed from conception and would be present in every cell division since conception. There is a bit of cause for us to be up beat about this not being our diagnosis as from what we have been told babies who have this disorder tend to show serious organ issues that stem well beyond the scope of the heart. Generally kidney and liver deficiencies would also be evidenced by abnormalities in head growth. We have seen nothing other than the heart issues. Babies with this disorder rarely live outside of the womb for more than 24 -72 hours and according to our doctors, no great measures are taken to saving babies with this condition because it is universally deemed to be unethical to implement lifesaving measures on a child in such a condition.
An amniocentesis can definitively determine whether or not our baby has these two chromosomal issues and we have elected to move forward with this testing. We have requested that the testing be conducted ASAP and hope that we can get in today or tomorrow as this will allow us to know more information before the end of the week.
While we wait for the test and results, we want stress a few important points. First, we’re struggling mightily but we are moving forward, focused on the many hopeful outcomes. Second, while we are obviously disappointed in the news to date, this information makes us realize how blessed we are with support from friends and family—this support CANNOT be overstated and we’re eternally grateful. We’ve already heard from a number of you and I know that we have countless others that stand ready to help as requested. Right now, there is little that can be done save keeping us in your thoughts, prayers, and be ready to listen to one of us drone on should we reach out. Assuming we receive positive results from the amniocentesis, we will have two major challenges that we won’t hesitate to ask for support. First, our nursery isn’t finished so we’ll be working on that as quickly as possible. Second, since I will be on bed rest, Brent is concerned about his ability to entertain me for up to two months. No doubt, we’ll be scheduling dinners and other in-house events to keep us from driving each other bonkers and we hope you’ll have a chance to join us. (We’re still keeping our humor intact.J)
In sum, we’ll do our best to keep you updated as we learn more information and we thank you for your support.
Sincerely,
Brent and Kirsten
Dear Family and Friends,
As you may or may not know, we learned some difficult news last week concerning our baby and pregnancy. We will begin from the very beginning so bear with us should you have already received some of this information. Brent and I went in for a routine exploratory sonogram on Thursday morning at my primary Maternity doctor’s office. At a visit two weeks prior I had expressed a concern about the fact that I was gaining hardly any weight. At that point my Doctor wasn’t terribly concerned but did think that a sonogram would be a good idea to double check the baby’s growth. The Sonogram on Thursday showed a perfectly symmetrical baby that was about 3.5 weeks behind where it should be growth wise. At that point the doctor suggested we see a specialist immediately who has much more comprehensive technology to help us identify why the baby was not growing at the rate it should be. In our final consultation he said that this is a yellow flag, more than likely something we could handle with a watchful eye. He simply wanted more information to be able to have a handle on the whole picture.
Friday morning, the specialist that determined that the baby was actually only 2.5 weeks behind growth wise and while still concerning, much less so than a baby who was nearing a month behind growth. She also identified three potential areas of concern:
- Weak amniotic flow through the umbilical chord
o Many women’s amniotic sack begins to show signs of nutrient deficiently in the later weeks of the third trimester which while concerning, if presented at 37-38 weeks generally not a concern because the baby has almost everything it needs to survive outside the womb
o My amniotic sac showing signs of depletion is a bit early but very manageable with continuous monitoring of fetal growth and stress levels. As long as baby shows positive growth signs from nutrients received in the womb it can stay in the womb. The moment we see negative trending or stagnant growth, the conversation becomes when the doctors want to take the baby out so they can spur growth in the outside world.
o While the baby could survive at this point, the doctors continue to talk about the most positive outcome would be if the baby could stay in until the 34th to 36th week.
o In order to prepare for the possibility of an early birth I spent the weekend at Sibley hospital receiving steroid shots to give a boost to lung development.
- Heart Valve Defect
o Much of the day on Friday was focused on looking at the heart of the baby. The specialist sent us downstairs to a childhood cardiac specialist who did a 2 hour consultation with us regarding the heart situation. There is an AV Valve defect that is in the congenital heart disease family. It sounds much worse than it actually probably is. There are two little flaps in the baby’s heart that are missing. According to the doctor the treatment for a baby in this situation is a normal birth and then at about 3 -4 months of age the child would go in for heart surgery to install the necessary flaps in order for long term survival. Prior to surgery we would probably see a baby that struggles a bit more to breathe and would need a bit more supervision. However from what we were told the surgery was very low risk and the child would recover from it in 5 -7 days. The doctor said that the baby would probably never be a world class athlete but it would not keep them from being on sports teams.
- Clenched hands
o A baby with a chromosomal disorder is unable to open their hands. Our baby had been poked and prodded for 3 hours prior to them trying to see open hands and thus it was completely balled up in the fetal position not willing to show any body parts. She wasn’t concerned that she didn’t see it, but she said that if we were able to see a full high five hand, it would mean we were out of the dark. On a side note, all of my friends who have children report they have never seen a high five hand on a sonogram and not cause for total alarm.
Prior to going to the heart specialist the doctor’s stance was that if we were able to rule out the heart issue we simply had a small baby with a weak amniotic sack that could be observed and then birthed when it was determined to be not doing so well within the womb.
Unfortunately, we were not able to rule out the heart issue and thus it brings some much larger questions into play- is this a chromosomal issue? Are the causes genetic in base?
The specialist seems to believe that we are trending towards a chromosomal issue – particularly 2 fatal issues called Trisomy 13 and Trisomy 18. Essentially there are three chromosomes instead of two of the 13th chromosome or the 18th chromosome. These types of abnormalities would have been formed from conception and would be present in every cell division since conception. There is a bit of cause for us to be up beat about this not being our diagnosis as from what we have been told babies who have this disorder tend to show serious organ issues that stem well beyond the scope of the heart. Generally kidney and liver deficiencies would also be evidenced by abnormalities in head growth. We have seen nothing other than the heart issues. Babies with this disorder rarely live outside of the womb for more than 24 -72 hours and according to our doctors, no great measures are taken to saving babies with this condition because it is universally deemed to be unethical to implement lifesaving measures on a child in such a condition.
An amniocentesis can definitively determine whether or not our baby has these two chromosomal issues and we have elected to move forward with this testing. We have requested that the testing be conducted ASAP and hope that we can get in today or tomorrow as this will allow us to know more information before the end of the week.
While we wait for the test and results, we want stress a few important points. First, we’re struggling mightily but we are moving forward, focused on the many hopeful outcomes. Second, while we are obviously disappointed in the news to date, this information makes us realize how blessed we are with support from friends and family—this support CANNOT be overstated and we’re eternally grateful. We’ve already heard from a number of you and I know that we have countless others that stand ready to help as requested. Right now, there is little that can be done save keeping us in your thoughts, prayers, and be ready to listen to one of us drone on should we reach out. Assuming we receive positive results from the amniocentesis, we will have two major challenges that we won’t hesitate to ask for support. First, our nursery isn’t finished so we’ll be working on that as quickly as possible. Second, since I will be on bed rest, Brent is concerned about his ability to entertain me for up to two months. No doubt, we’ll be scheduling dinners and other in-house events to keep us from driving each other bonkers and we hope you’ll have a chance to join us. (We’re still keeping our humor intact.J)
In sum, we’ll do our best to keep you updated as we learn more information and we thank you for your support.
Sincerely,
Brent and Kirsten
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