Not much to report right now. Madeleine is about the same as she was on Wednesday meaning she's still fighting a cold and they're pretty convinced its just a virus. They have her on oral anti-biotics to prevent a bacterial pneumonia. She's running intermittent fevers and is generally grouchy-- pretty much like anyone else with a bad cold. The difference is that she's still on increased oxygen consumption and that's the factor keeping us from going home. We're hopeful that once she starts to turn the corner, she'll wean quickly from the oxygen and get on out of here. That being said, she hasn't turned the corner yet.
That's all-- nothing too bad just slow and frustrating. We wouldn't expect anything else!
Saturday, February 28, 2009
Wednesday, February 25, 2009
Deja Vu All Over Again
I think the quote above is fitting as I believe that Yogi Berra would appreciate my daughter. She's the only child that can go into the hospital, smiling at anyone who looks at her and yet still ends up getting admitted. Yup, that's right, Madeleine's back at Children's hospital and while Kirsten and I are disappointed, we're not too upset and think it was a wise decision. Madeleine has been fighting a cold since Sunday afternoon. Its nothing too serious-- its just a cold with the requisite fevers, snot, and general crankiness and irritability that characterizes most colds. The difference with Madeleine is that given her diminished lung capacity and propensity for getting really sick really fast, the doctors were concerned that the cold could rapidly progress into a full blown pneumonia.
Despite this concern, most of the data points to quick recovery from the cold and ideally no actual pneumonia. Blood tests are the first indicator of a bacterial infection-- pneumonia is typically a bacterial infection-- and the blood test taken this morning showed no signed of bacteria-- the white blood cell count was normal (6) and there were no new bands forming. (these "bands" can be an indicactor that the body is gearing up to fight a bacterial infection.)
While this was good news, the doctors were still concerned as we've had to increase Madeleine's oxygen support-- she's up from .5 liters to 3 liters-- and they were also somewhat concerned by the X-Ray they took this afternoon. The X-Ray wasn't definitive but it showed the potential for a pneumonia. Given the fact that Madeleine has run fevers intermittently for the last three days coupled with the increased oxygen support and concerning X-Ray and it ended up in a close call that resulted in us admitting Madeleine to the hospital.
In the end, we're hopeful that she won't develop pneumonia and will recover from this cold in the next few days. In the event that she does develop a pneumonia, Madeleine's in the best place to catch it and we'll likely catch the pneumonia in its early stages, thereby making it easier and faster to treat. In summary: this isn't a major step back and ideally won't be a long admission. We just chose the safe route to make sure that Madeleine doesn't develop a really ban pneumonia.
While the hospital admission is quite a downer, we do have good news: Madeleine has put on weight and now weighs 13 lbs 6 oz. Madeleine was released from Children's on January 3rd, weighing just under 10lbs meaning that in less than two months, Madeleine has gained nearly 3.5 lbs. She's still a tiny little thing but she's rapidly approaching the chubby little girl that we're all expecting.
That's all for now. I'll of course do a better job of posting information as we learn more in the hospital. We're hoping to be home soon and have told the doctors that we expect to be eating her birthday cake in our house next Tuesday!
Despite this concern, most of the data points to quick recovery from the cold and ideally no actual pneumonia. Blood tests are the first indicator of a bacterial infection-- pneumonia is typically a bacterial infection-- and the blood test taken this morning showed no signed of bacteria-- the white blood cell count was normal (6) and there were no new bands forming. (these "bands" can be an indicactor that the body is gearing up to fight a bacterial infection.)
While this was good news, the doctors were still concerned as we've had to increase Madeleine's oxygen support-- she's up from .5 liters to 3 liters-- and they were also somewhat concerned by the X-Ray they took this afternoon. The X-Ray wasn't definitive but it showed the potential for a pneumonia. Given the fact that Madeleine has run fevers intermittently for the last three days coupled with the increased oxygen support and concerning X-Ray and it ended up in a close call that resulted in us admitting Madeleine to the hospital.
In the end, we're hopeful that she won't develop pneumonia and will recover from this cold in the next few days. In the event that she does develop a pneumonia, Madeleine's in the best place to catch it and we'll likely catch the pneumonia in its early stages, thereby making it easier and faster to treat. In summary: this isn't a major step back and ideally won't be a long admission. We just chose the safe route to make sure that Madeleine doesn't develop a really ban pneumonia.
While the hospital admission is quite a downer, we do have good news: Madeleine has put on weight and now weighs 13 lbs 6 oz. Madeleine was released from Children's on January 3rd, weighing just under 10lbs meaning that in less than two months, Madeleine has gained nearly 3.5 lbs. She's still a tiny little thing but she's rapidly approaching the chubby little girl that we're all expecting.
That's all for now. I'll of course do a better job of posting information as we learn more in the hospital. We're hoping to be home soon and have told the doctors that we expect to be eating her birthday cake in our house next Tuesday!
Tuesday, February 24, 2009
Quick Update
Just realized that this post didn't go up yesterday. My apologies. More soon...
Sorry for the lack of updates-- I don't have a good reason. Madeleine was doing great until this past Sunday when she seems to have caught a cold. Its nothing major but she's running a fever and we have to suction a lot more from her trach. She hasn't been as active the last few days and just has looked/acted kinda crummy-- you know, like when you have a cold.
We're hopeful that she'll be able to kick the cold without needing any antibiotics and/or admissions to the hospital. We do have regularly scheduled appointments tomorrow so it will be interesting to see how she does. There's always the chance that they'll choose to admit her to ensure that she gets through the cold but right now, we're hopeful that we can avoid this outcome.
That's all for right now. I'll plan on posting updates tomorrow after we see the doctor. I also have some pictures that we took over the weekend-- will get them up soon.
Sorry for the lack of updates-- I don't have a good reason. Madeleine was doing great until this past Sunday when she seems to have caught a cold. Its nothing major but she's running a fever and we have to suction a lot more from her trach. She hasn't been as active the last few days and just has looked/acted kinda crummy-- you know, like when you have a cold.
We're hopeful that she'll be able to kick the cold without needing any antibiotics and/or admissions to the hospital. We do have regularly scheduled appointments tomorrow so it will be interesting to see how she does. There's always the chance that they'll choose to admit her to ensure that she gets through the cold but right now, we're hopeful that we can avoid this outcome.
That's all for right now. I'll plan on posting updates tomorrow after we see the doctor. I also have some pictures that we took over the weekend-- will get them up soon.
Monday, February 16, 2009
A Very Good Day
Kirsten and I both had work off today for President's Day and, thanks to Kirsten's planning, we spent our first night away from Madeleine when she's been in the house. We felt like little kids last night waiting for the nurse to arrive as we'd pack a bag. We spent the night at a hotel in Downtown DC and then spent the day touring museums like tourists and had a great lunch. We only called the house three times to check on Madeleine which we thought was pretty great.
Perhaps even better than our day away, when we got home tonight, Madeleine amazed us with her continued progress. She continues to grow and is really starting to develop her core body strength. Its weird for us to gauge her progress as she's all over the map. In terms of following with eye sight and responding to stimuli, she's near or ahead of goals for her corrected age of nearly 10 months. She's wearing clothes in the 3-6 months category but her legs are so skinny that they easily fit into newborn clothing-- she's just tall and skinny (kinda like her dad used to be.) From a strength standpoint, she has a lot of work to do but she's making great strides. She continues to improve her ability to roll from back to front-- if she didn't have the trach, she'd roll over easily and even with the trach, she's usually able to roll anyway. From front to back, she's not close yet. During tummy time, she's able to raise her head with her neck muscles but she's not able to push up much with her arms. We're seeing some progress but that's the biggest area for improvement and we hope to post additional improvements soon. We meet weekly with a physical/occupational therapist and she provides great feedback and ideas that we can work on each week-- she comes tomorrow and I'm anxious to hear her thoughts on how we can continue to work on improving her arm/core body strength. The other area that I expect to start seeing improvement is in her leg strength. She's been growing so fast and lengthening out so much that her legs haven't really caught up yet. I expect we'll start to see her legs grow and once her core strength allows, we'll start putting her in "bouncy" seats that will help her develop these faster.
All in all, things are going great. Madeleine has tons of development ahead of her but so long as she remains healthy and Kirsten and I can stay patient, I think we're going to see some remarkable development. That's all for now-- have a good night.
Perhaps even better than our day away, when we got home tonight, Madeleine amazed us with her continued progress. She continues to grow and is really starting to develop her core body strength. Its weird for us to gauge her progress as she's all over the map. In terms of following with eye sight and responding to stimuli, she's near or ahead of goals for her corrected age of nearly 10 months. She's wearing clothes in the 3-6 months category but her legs are so skinny that they easily fit into newborn clothing-- she's just tall and skinny (kinda like her dad used to be.) From a strength standpoint, she has a lot of work to do but she's making great strides. She continues to improve her ability to roll from back to front-- if she didn't have the trach, she'd roll over easily and even with the trach, she's usually able to roll anyway. From front to back, she's not close yet. During tummy time, she's able to raise her head with her neck muscles but she's not able to push up much with her arms. We're seeing some progress but that's the biggest area for improvement and we hope to post additional improvements soon. We meet weekly with a physical/occupational therapist and she provides great feedback and ideas that we can work on each week-- she comes tomorrow and I'm anxious to hear her thoughts on how we can continue to work on improving her arm/core body strength. The other area that I expect to start seeing improvement is in her leg strength. She's been growing so fast and lengthening out so much that her legs haven't really caught up yet. I expect we'll start to see her legs grow and once her core strength allows, we'll start putting her in "bouncy" seats that will help her develop these faster.
All in all, things are going great. Madeleine has tons of development ahead of her but so long as she remains healthy and Kirsten and I can stay patient, I think we're going to see some remarkable development. That's all for now-- have a good night.
Sunday, February 15, 2009
Hey All
Can't believe its been nearly a week since my last post-- I guess time flies when your daughter is healthy. In addition to being healthy, she's plenty spunky as we've been back at the hospital twice in the past few days-- Thursday evening and this Sunday morning-- as Madeleine pulled her feeding tube out both times. It is a pain because we have to go back to the hospital to have the tube replaced but it is somewhat good news that she's as active as she is. We're revising how we're taping the tube to her face and we hope that we won't end back up at the hospital until her next appointment on February 25th.
There was a silver lining to her pulling out the tube as we were able to get a bunch of pictures with no tape on her face-- we tried out a few outfits. Follow this link to see all of the pictures but here is one of our favorites:
There was a silver lining to her pulling out the tube as we were able to get a bunch of pictures with no tape on her face-- we tried out a few outfits. Follow this link to see all of the pictures but here is one of our favorites:
For those interested in seeing Madeleine in a video, here's one of her playing yesterday in her kidcart seat:
That's all for now. Thanks again for your interest.
Wednesday, February 11, 2009
New Weight
Madeleine just weighed in at the pediatricians office and she's at 12lbs 11.5 oz. That's up from 12lbs 2 oz, twelve days ago. So what does that mean? Not too much since it is difficult to compare weights on different scales (especially when the numbers are so small). Still, she's moving in the right direction and we're pleased. We're hoping that she gains 1 oz/day so she's not quite at that goal. Still, we're dealing wtih a limited data set and the most important factor is that we continue to trend in the right direction.
That's all for now-- just wanted to report the continued good news.
That's all for now-- just wanted to report the continued good news.
Monday, February 9, 2009
Good News
All,
We had a nice weekend relaxing at home and even getting a few projects done. (We cleaned out the garage AND filed our taxes yesterday!) The best news though came earlier today when we got the results from Madeleine's blood work last week. You may remember that the previous week, her platelets were elevated and her liver fuctioning test (lft) also showed some concern. The issues aren't fully resolved but all of her numbers decreased significantly with a one week interval and we expect this trend to continue. We'll have further tests done in a few weeks to ensure we don't have any issues but this was really good news.
That's all for now. I'll post more pictures in the coming days... Madeleine just continues to grow.
We had a nice weekend relaxing at home and even getting a few projects done. (We cleaned out the garage AND filed our taxes yesterday!) The best news though came earlier today when we got the results from Madeleine's blood work last week. You may remember that the previous week, her platelets were elevated and her liver fuctioning test (lft) also showed some concern. The issues aren't fully resolved but all of her numbers decreased significantly with a one week interval and we expect this trend to continue. We'll have further tests done in a few weeks to ensure we don't have any issues but this was really good news.
That's all for now. I'll post more pictures in the coming days... Madeleine just continues to grow.
Thursday, February 5, 2009
NICU visitors and fun, normal days
We had some folks over at our house last night as two Physicians Assistants (PAs)-- Lauren and Rebecca-- and one nurse, Clarissa, came over to check out Madeleine's growth. It was great catching up with the three as we spent so many days with them in the NICU at Children's. It was also great to hear their comments about Madeleine's growth. We know she's doing great but it helps to hear from folks who spent a great deal of time with her when she weighed 3 lbs as it reinforces how far we've come. Check out this link for a few pictures (we didn't take many-- guess we got caught up in visiting).
Madeleine's medical stroller also arrived today. The stroller has a few benefits. First, it is designed to promote good posture and actually comes with a rolling seat attachment that allows us to move Madeleine around the house (smaller than the actual stroller). The stroller itself also has a medical poll so when we're out of the house-- typically at doctor's visits, we can easily hang her feeding pump and bag. We were somewhat reluctant to get the stroller as we didn't want a "medical" stroller but it looks pretty good and Madeleine seems to like it:
Madeleine's medical stroller also arrived today. The stroller has a few benefits. First, it is designed to promote good posture and actually comes with a rolling seat attachment that allows us to move Madeleine around the house (smaller than the actual stroller). The stroller itself also has a medical poll so when we're out of the house-- typically at doctor's visits, we can easily hang her feeding pump and bag. We were somewhat reluctant to get the stroller as we didn't want a "medical" stroller but it looks pretty good and Madeleine seems to like it:
(I love that outfit-- wish I could get a coverall made out of sweatpants with a hood in my size.)
We also had our first visit from the county physical and occupational therapist. Kirsten worked with her for a few hours and we learned a lot of tips on how we can ensure that Madeleine develops appropriately. The key now that she's growing is that we want her to develop her muscles and bone structure appropriately. Premature babies as well as babies with Down Syndrome, lack proper muscle tone and that can lead to poor posture and other factors that can impact development. We have a long ways to go but we think that we're headed in the right direction. Therapists will be out every week to monitor Madeleine's progress and to provide additional ideas that we can implement.
Finally, here's a quick video of Madeleine. This was taken over the past weekend so she's grown some since then. Still, its pretty representative of Madeleine's demeanor-- she's a happy and active baby:
That's all for now. Madeleine also went to the hospital today to get blood taken for follow-on labs related to Madeleine's high platelet levels and elevated liver functioning tests. I'll post the results and any next steps once we hear back from the doctors tomorrow.
Tuesday, February 3, 2009
11 mos and 1 month!
Today is a big day for us-- Madeleine is eleven months old and she's been home for one month without a hospital admission. This is twice as long as she's ever been home before and we're ecstatic.
I do have some pictures and a video to post but of course that stuff is at home-- I'll try to post ittonight. In addition to highlighting the big events for today, I also wanted to provide an update from last Friday's doctor appointments. Madeleine had two more appointments on Friday and also had some blood lab work completed. The two doctor's visits were extremely informative as we met with Dr. Bloom from complex care and also met with Dr. Rosenberg in the Genetics/Down Syndrome clinic at Children's. We've been working with Dr. Bloom for quite some time and she's helped us immensely in gathering and synthesizing information from all of Madeleine's doctors. Her specialty is "complex care" and she essentially looks at Madeleine holistically and helps guide her medical path going forward. Madeleine knows her pretty well and despite being extremely tired and over stimulated on Friday, she had a good smile for Dr. Bloom. Dr. Bloom was impressed with Madeleine's growth and she showed us some different growth charts showing that while Madeleine is still small, she's rapidly catching up with the "normal" growth chart. In fact, she's in the 5% growth range for female babies with Down Syndrome. This is the first time Madeleine's ever been in a "normal" weight range and we were pretty glad to see the progress. Assuming Madeleine can keep this growth rate up for a few more months, she should continue to make up ground.
We discussed Madeleine's medical plan for the next 3-6 months and we came up with the following:
1) Sustained growth is still the most important factor. She just needs to stay healthy and to keep on chunking up.
2) In a few months, we will consider options for feeding. The NJ feeding tube isn't a long term option and we will likely consider inserting a feeding tube directly to Madeleine's stomach or intestines. It sounds bad but its more convenient than feeding via the nasal tube. Additionally, if the doctors think it safe to allow food in Madeleine's stomach-- everything now goes directly into the intestines-- we can "bolus" feed Madeleine meaning that she doesn't have to be connected to a feeding pump all of the time. We'll likely go through a battery of tests in a few months that will help determine the best path moving forward. In the long term, all of Madeleine's doctors think that she'll eat normally. However, this is likely months and possibly years away and the feeding tube is the best feeding option.
3) We're not making any changes to the ventilator right now. In a few months, we might consider weaning her off the ventilator for short periods of time during the day. However, the ventilator makes breathing easier for Madeleine thereby enabling her growth. Its a pain but its a necessary pain. Again, we fully expect Madeleine to get rid of the ventilator-- we're just a long way away from that happening.
4) The only bit of frustrating news is that Madeleine's blood work showed some confusing information as her liver levels were slightly elevated and her platelet count was extremely high. We're going to re-test at the end of this week and the hope is that these numbers go down. They don't have an explanation for the heightened levels and the hope is that they'll resolve themselves. (What? You thought Madeleine would have a medical update without some drama?)
All in all, we were very pleased with the plan. We'd obviously like for Madeleine to get off all of her medical support but we're happy to have her home and love watching her grow. So long as she's happy, we can deal with a slower pace.
In addition to meeting with Dr. Bloom, we met with a genticist at Children's. The hospital has a great support network for children with Down's and Dr. Rosenberg leads the practice. He is well renowned in the Down Syndrome community and I was pleased that he spent over two hours discussing her medical history and suggesting other things to consider. Taken as a whole, he was surprised by Madeleine's demeanor and progress. He stressed that Madeleine's Down Syndrome diagnosis is only one aspect of her medical condition and stressed that if Madeleine continues to grow and develop, we can expect her to recover and lead a normal life. In the future, we have the option of attending clinic days at Children's where the doctors will monitor specific medical traits more common in kids with Down's. Additionally, the Down Syndrome clinic provides support and recommendations for additional resources if we need it. We're glad to finally focus on issues related to Down's syndrome as this indicates that Madeleine's larger medical issues are under control.
That's all for now-- thanks again for everyone's support. These last 11 months have been extremely challenging but also absolutely rewarding and we can't thank everyone enough for the tremendous support you've provided. Take care,
Brent and Kirsten
I do have some pictures and a video to post but of course that stuff is at home-- I'll try to post ittonight. In addition to highlighting the big events for today, I also wanted to provide an update from last Friday's doctor appointments. Madeleine had two more appointments on Friday and also had some blood lab work completed. The two doctor's visits were extremely informative as we met with Dr. Bloom from complex care and also met with Dr. Rosenberg in the Genetics/Down Syndrome clinic at Children's. We've been working with Dr. Bloom for quite some time and she's helped us immensely in gathering and synthesizing information from all of Madeleine's doctors. Her specialty is "complex care" and she essentially looks at Madeleine holistically and helps guide her medical path going forward. Madeleine knows her pretty well and despite being extremely tired and over stimulated on Friday, she had a good smile for Dr. Bloom. Dr. Bloom was impressed with Madeleine's growth and she showed us some different growth charts showing that while Madeleine is still small, she's rapidly catching up with the "normal" growth chart. In fact, she's in the 5% growth range for female babies with Down Syndrome. This is the first time Madeleine's ever been in a "normal" weight range and we were pretty glad to see the progress. Assuming Madeleine can keep this growth rate up for a few more months, she should continue to make up ground.
We discussed Madeleine's medical plan for the next 3-6 months and we came up with the following:
1) Sustained growth is still the most important factor. She just needs to stay healthy and to keep on chunking up.
2) In a few months, we will consider options for feeding. The NJ feeding tube isn't a long term option and we will likely consider inserting a feeding tube directly to Madeleine's stomach or intestines. It sounds bad but its more convenient than feeding via the nasal tube. Additionally, if the doctors think it safe to allow food in Madeleine's stomach-- everything now goes directly into the intestines-- we can "bolus" feed Madeleine meaning that she doesn't have to be connected to a feeding pump all of the time. We'll likely go through a battery of tests in a few months that will help determine the best path moving forward. In the long term, all of Madeleine's doctors think that she'll eat normally. However, this is likely months and possibly years away and the feeding tube is the best feeding option.
3) We're not making any changes to the ventilator right now. In a few months, we might consider weaning her off the ventilator for short periods of time during the day. However, the ventilator makes breathing easier for Madeleine thereby enabling her growth. Its a pain but its a necessary pain. Again, we fully expect Madeleine to get rid of the ventilator-- we're just a long way away from that happening.
4) The only bit of frustrating news is that Madeleine's blood work showed some confusing information as her liver levels were slightly elevated and her platelet count was extremely high. We're going to re-test at the end of this week and the hope is that these numbers go down. They don't have an explanation for the heightened levels and the hope is that they'll resolve themselves. (What? You thought Madeleine would have a medical update without some drama?)
All in all, we were very pleased with the plan. We'd obviously like for Madeleine to get off all of her medical support but we're happy to have her home and love watching her grow. So long as she's happy, we can deal with a slower pace.
In addition to meeting with Dr. Bloom, we met with a genticist at Children's. The hospital has a great support network for children with Down's and Dr. Rosenberg leads the practice. He is well renowned in the Down Syndrome community and I was pleased that he spent over two hours discussing her medical history and suggesting other things to consider. Taken as a whole, he was surprised by Madeleine's demeanor and progress. He stressed that Madeleine's Down Syndrome diagnosis is only one aspect of her medical condition and stressed that if Madeleine continues to grow and develop, we can expect her to recover and lead a normal life. In the future, we have the option of attending clinic days at Children's where the doctors will monitor specific medical traits more common in kids with Down's. Additionally, the Down Syndrome clinic provides support and recommendations for additional resources if we need it. We're glad to finally focus on issues related to Down's syndrome as this indicates that Madeleine's larger medical issues are under control.
That's all for now-- thanks again for everyone's support. These last 11 months have been extremely challenging but also absolutely rewarding and we can't thank everyone enough for the tremendous support you've provided. Take care,
Brent and Kirsten
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