Tuesday, November 30, 2010
Monday, November 22, 2010
Great Great News
It was a HUGE day today for us at Audrey's EP appointment! It had been 3 months since our last appointment and I have been practically counting the days until today's appointment because the doctor mentioned last time that we would look at transitioning from medicines every 6 hours to every 8 hours. Upon walking in, the doctor asked us "whats new and exciting?" to which I replied that "this appointment is exciting!" because of the possibility of the change. The midnight and 6am daily medicine intervals along with the two older siblings that seem to also come in our room for some reason nightly is exhausting. He confirmed that we can make that change starting today so I am extremely relieved that we can try to start sleeping once again. Rather than 12-6-12-6 medicine intervals we'll now switch over to three times a day, most likely around the 7-3-11 times.
Along with the great medicine news, they downloaded all of the data from her pacemaker from the past few months of history. Everything looked really good and there was no sign of any tachycardia rhythms. The pacer had kicked in about 5% of the time and they were very very pleased with how she was doing. The medicine and pacemaker combo is really working well for Audrey. They did not change any of the pacemaker settings and we will be going back in 3 months for our next checkup.
The documentary crew came in with the cameras and got some video of Audrey's appointment to go with the video that we took a few weeks ago. Audrey put on a good show and smiled and laughed most of the time. We're not yet sure when that video and documentation will all be compiled and available but we'll make sure to post it when it is.
While there, one of our favorite cardiologists from this whole journey poked his head in to see Audrey. He was the first one we were lucky to see on the day when we were at the perinatologist and were sent immediately over to the cardiologists office. He was the one that discussed with us the initial possibilities and then was the Cardiologist that was there in the room when Audrey was born. We were always very impressed by not only his knowledge and demeanor but the way that he reached out to some doctors well beyond the practice for additional opinions and input on our case. He made a point of going out of his way to come in for some of the weekend ultrasounds while Amanda was stuck in the hospital and seemed to truly take a personal interest in helping us. Seeing him again today made Amanda tear up to think back through it all.
We are grateful that Audrey is doing as well as she is at this point. She is now around 14-15 lbs and seems huge compared to the 5lb she was when we brought her home back in June. She is smiling quite a bit and her big sister and brother love trying to entertain her and make her laugh.
Thank you again to all of friends and family that have helped us throughout.
- Mark
Along with the great medicine news, they downloaded all of the data from her pacemaker from the past few months of history. Everything looked really good and there was no sign of any tachycardia rhythms. The pacer had kicked in about 5% of the time and they were very very pleased with how she was doing. The medicine and pacemaker combo is really working well for Audrey. They did not change any of the pacemaker settings and we will be going back in 3 months for our next checkup.
The documentary crew came in with the cameras and got some video of Audrey's appointment to go with the video that we took a few weeks ago. Audrey put on a good show and smiled and laughed most of the time. We're not yet sure when that video and documentation will all be compiled and available but we'll make sure to post it when it is.
While there, one of our favorite cardiologists from this whole journey poked his head in to see Audrey. He was the first one we were lucky to see on the day when we were at the perinatologist and were sent immediately over to the cardiologists office. He was the one that discussed with us the initial possibilities and then was the Cardiologist that was there in the room when Audrey was born. We were always very impressed by not only his knowledge and demeanor but the way that he reached out to some doctors well beyond the practice for additional opinions and input on our case. He made a point of going out of his way to come in for some of the weekend ultrasounds while Amanda was stuck in the hospital and seemed to truly take a personal interest in helping us. Seeing him again today made Amanda tear up to think back through it all.
We are grateful that Audrey is doing as well as she is at this point. She is now around 14-15 lbs and seems huge compared to the 5lb she was when we brought her home back in June. She is smiling quite a bit and her big sister and brother love trying to entertain her and make her laugh.
Thank you again to all of friends and family that have helped us throughout.
- Mark
Tuesday, October 19, 2010
October Update
It's been a long long while since we have posted an update out here so I'm not sure that anyone is still reading. As I've mentioned in past posts, that is truly because Audrey is doing so well and there really isn't many updates about her condition.
Audrey is now roughly 4 and a half months old and is growing and progressing great. We are always a little confused on whether to consider her 18 weeks old or 13 weeks old due to being 5 weeks early when we gauge where she stands on her development. She has really gotten so much more stable physically, is interacting much more, and is smiling a lot. She is still on the same two medications every 6 hours so sleep is still somewhat dictated by that pattern. She doesn't have the opportunity to truly attempt to sleep through the night because I have to wake her at midnight for meds. Last night we had a malfunction in the routine and I didn't wake up at midnight and Audrey slept right through until her 6am medication time so we know she could do it if able. I'm hoping more than anything that we'll get to transition to 8 hour medication intervals at next months Cardiology appointment.
Amanda took Audrey to the Pediatrician for her 4 month appointment yesterday and it was nothing but good news. She is up to 12 lb and 14 oz and roughly 30 percentile for weight and 35th percentile for height. They were shocked at the jump, especially in height, from her last visit. Her pediatrician commented that her gross motor skills were excellent and she is exactly where a normal 4 month old should be on all fronts. The Pediatrician commented that "we just don't realize what an amazing job the doctors did" to get Audrey to where she is today and how absolutely amazing it is. Despite the shots Audrey had to get and was cranky about all day, it was awesome to get the news that we generally would take for granted.
In past posts I have mentioned the write-up on our crazy story that Children's Healthcare of Atlanta did to use for some advertising/fundraising efforts. They said that the story went over really well and was inspiring when presented in one of their events. A few weeks ago they asked if we would be willing to do some video interviews about the journey also and we definitely said yes we'd love to help however possible. Amanda, Audrey and myself went down to Egleston last week and recorded some video discussions. They also recorded some video with the doctors and nurses we worked with most closely. Not sure how exactly they'll use it all but she mentioned that they are redesigning their website and it is going to be featured on there once that it is complete.
Overall, Audrey is doing excellent. With two older siblings she definitely gets to attend quite a few different events and always goes along for the ride without fussing at all. We feel very fortunate.
- Mark
I know, not the best pic but the only recent one I have on my phone, and kind of funny. I think the flash surprised her.
Audrey is now roughly 4 and a half months old and is growing and progressing great. We are always a little confused on whether to consider her 18 weeks old or 13 weeks old due to being 5 weeks early when we gauge where she stands on her development. She has really gotten so much more stable physically, is interacting much more, and is smiling a lot. She is still on the same two medications every 6 hours so sleep is still somewhat dictated by that pattern. She doesn't have the opportunity to truly attempt to sleep through the night because I have to wake her at midnight for meds. Last night we had a malfunction in the routine and I didn't wake up at midnight and Audrey slept right through until her 6am medication time so we know she could do it if able. I'm hoping more than anything that we'll get to transition to 8 hour medication intervals at next months Cardiology appointment.
Amanda took Audrey to the Pediatrician for her 4 month appointment yesterday and it was nothing but good news. She is up to 12 lb and 14 oz and roughly 30 percentile for weight and 35th percentile for height. They were shocked at the jump, especially in height, from her last visit. Her pediatrician commented that her gross motor skills were excellent and she is exactly where a normal 4 month old should be on all fronts. The Pediatrician commented that "we just don't realize what an amazing job the doctors did" to get Audrey to where she is today and how absolutely amazing it is. Despite the shots Audrey had to get and was cranky about all day, it was awesome to get the news that we generally would take for granted.
In past posts I have mentioned the write-up on our crazy story that Children's Healthcare of Atlanta did to use for some advertising/fundraising efforts. They said that the story went over really well and was inspiring when presented in one of their events. A few weeks ago they asked if we would be willing to do some video interviews about the journey also and we definitely said yes we'd love to help however possible. Amanda, Audrey and myself went down to Egleston last week and recorded some video discussions. They also recorded some video with the doctors and nurses we worked with most closely. Not sure how exactly they'll use it all but she mentioned that they are redesigning their website and it is going to be featured on there once that it is complete.
Overall, Audrey is doing excellent. With two older siblings she definitely gets to attend quite a few different events and always goes along for the ride without fussing at all. We feel very fortunate.
- Mark
I know, not the best pic but the only recent one I have on my phone, and kind of funny. I think the flash surprised her.
Monday, August 30, 2010
Doctor visits
My lack of blog posts definitely indicates a couple things. One, Audrey is thriving and doing very well. Two, we are crazy tired with my work being really busy, school starting back up, and Audrey's sleep patterns that I don't get around to writing on here.
We had a couple of appointments for Audrey last week. She had her 2 month Pediatric appointment which included her getting vaccine shots. She was not happy about those and seemed uncomfortable and inconsolable the remainder of the day. Outside of those shots, the appointment went well and her Pediatrician said that she was doing awesome. She weighed in right around 10lbs and was measuring at about 20% on the height and weight scale for her 10 week age. At her previous appointment she was tiny on the preemie scale and now was 20% on the normal newborn scale. Amanda has made a point of trying to rotate and see each of the doctors in the practice at each visit so that they all get familiar with Audrey and Long QT. She left feeling better after this visit that this Pediatrician seemed very familiar with the condition already and didn't require quite as many condition details.
We followed up the Pediatrician appointment with her EP Cardiology visit on Thursday. We got to sit down to discuss Audrey's DNA test results in more detail. They had given us the overall summary results over the phone but we now had the chance to talk about the details. There was only one well documented write-up on a case with the same gene mutation and condition to refer to. There are other cases but they were just not documented. Based on the DNA results they are almost certain that Audrey is an isolated case and did not have this condition passed from Amanda or myself. Amanda has already been tested for the full spectrum of known possible mutations and did not have any of them. To be positive the next step is to test me only for the same gene that Audrey's condition tested positive for. There is no reason to test the full spectrum now that we know the precise gene to look at. I should get those results back in 3-4 weeks. Based on all of the DNA testing information and the ekg's, they do not suspect either Avery or Ryan of having any form of Long QT which is a huge relief.
After discussing her DNA results they downloaded all of Audrey's heart rhythm information for the past month from her pacer. Last month when we were there the pacer was triggering about half of the time and they reduced the low end of the settings from 120 bpm down to 100 bpm. Her pacemaker had only triggered .2% of the time this month, less than 1% of the time. Along with that there were no signs of any blips of tachycardic beats at any point during the month. We were extremely relieved and the doctors were really felt that the Mexiletine was working greatly for Audrey. Her QT interval had shorted from the initial high 600 milliseconds range down to now being consistently around 460 millseconds which is truly incredible. Our EP repeated that we really are so lucky to have found and treated Audrey's condition when we did. Otherwise her outcome most likely would have been a bad one. Here we are and they predict Audrey to have a really good outlook at this point and even said that with her Type 3 that she can most likely live an active life also. They modified both her Beta blockers and Mexiletine dosages slightly and said that although we will not stop taking the beta blockers completely that we will back off the amount somewhat as she grows into it. The Mexiletine is the medicine that they attribute the most success to. We don't go back to see them for 3 months and at that time they will be changing the dosage from every 6 hours to every 8 hours. Huge! I cannot wait for that. That will allow us to get into a little more normal sleep again so that is something great to look forward to in November.
Avery and Ryan are still loving having Audrey around and want to hold her as much as possible. Audrey goes everywhere with the family and is a trooper. We got the writeup that CHOA did on Audrey's story although we aren't quite sure exactly how they will be using it. They mentioned possibly on their website or some documentation. I will post it here soon.
...Audrey with her giraffe Sophie.
...on our new backyard rock.
We had a couple of appointments for Audrey last week. She had her 2 month Pediatric appointment which included her getting vaccine shots. She was not happy about those and seemed uncomfortable and inconsolable the remainder of the day. Outside of those shots, the appointment went well and her Pediatrician said that she was doing awesome. She weighed in right around 10lbs and was measuring at about 20% on the height and weight scale for her 10 week age. At her previous appointment she was tiny on the preemie scale and now was 20% on the normal newborn scale. Amanda has made a point of trying to rotate and see each of the doctors in the practice at each visit so that they all get familiar with Audrey and Long QT. She left feeling better after this visit that this Pediatrician seemed very familiar with the condition already and didn't require quite as many condition details.
We followed up the Pediatrician appointment with her EP Cardiology visit on Thursday. We got to sit down to discuss Audrey's DNA test results in more detail. They had given us the overall summary results over the phone but we now had the chance to talk about the details. There was only one well documented write-up on a case with the same gene mutation and condition to refer to. There are other cases but they were just not documented. Based on the DNA results they are almost certain that Audrey is an isolated case and did not have this condition passed from Amanda or myself. Amanda has already been tested for the full spectrum of known possible mutations and did not have any of them. To be positive the next step is to test me only for the same gene that Audrey's condition tested positive for. There is no reason to test the full spectrum now that we know the precise gene to look at. I should get those results back in 3-4 weeks. Based on all of the DNA testing information and the ekg's, they do not suspect either Avery or Ryan of having any form of Long QT which is a huge relief.
After discussing her DNA results they downloaded all of Audrey's heart rhythm information for the past month from her pacer. Last month when we were there the pacer was triggering about half of the time and they reduced the low end of the settings from 120 bpm down to 100 bpm. Her pacemaker had only triggered .2% of the time this month, less than 1% of the time. Along with that there were no signs of any blips of tachycardic beats at any point during the month. We were extremely relieved and the doctors were really felt that the Mexiletine was working greatly for Audrey. Her QT interval had shorted from the initial high 600 milliseconds range down to now being consistently around 460 millseconds which is truly incredible. Our EP repeated that we really are so lucky to have found and treated Audrey's condition when we did. Otherwise her outcome most likely would have been a bad one. Here we are and they predict Audrey to have a really good outlook at this point and even said that with her Type 3 that she can most likely live an active life also. They modified both her Beta blockers and Mexiletine dosages slightly and said that although we will not stop taking the beta blockers completely that we will back off the amount somewhat as she grows into it. The Mexiletine is the medicine that they attribute the most success to. We don't go back to see them for 3 months and at that time they will be changing the dosage from every 6 hours to every 8 hours. Huge! I cannot wait for that. That will allow us to get into a little more normal sleep again so that is something great to look forward to in November.
Avery and Ryan are still loving having Audrey around and want to hold her as much as possible. Audrey goes everywhere with the family and is a trooper. We got the writeup that CHOA did on Audrey's story although we aren't quite sure exactly how they will be using it. They mentioned possibly on their website or some documentation. I will post it here soon.
In the meantime here are a few pics...
...asleep.
...Audrey with her giraffe Sophie.
...on our new backyard rock.
- Mark
Saturday, August 14, 2010
Genetic testing results
As you can tell by the lack of recent posts, everything has been going very well. Audrey has been eating and sleeping like a champ lately and is really growing quite a bit. It is hard to believe that she will be 9 weeks old on Monday. The first couple of months have really flown by and we when we hold Audrey now it feels like she has doubled in size from the tiny little 5 pounder that was born on June 14. We still have the midnight and 6 am medicine dosages that we have to wake for but we have recently been letting her go as long as possible in between rather than waking her for a feeding. A couple of times this week she treated us to almost making it the full 6 hours (or really about 5.5 after getting her down from the midnight one).
We had our first intro into what our future will hold with treating any of her illnesses. When holding her one night, she felt a little warm to us. We took her temp a couple of times and it was only in the high 99's but immediately our heads start churning on the possibilities of what that night could hold if it worsens. We pulled out the long list of medications that she can or cannot have because many medications such as antihistamines or some antibiotics actually lengthen the QT interval. Thank goodness Tylenol is safe to take but just to be certain we called the CHOA Cardio 24 hour line just to talk with them about giving it to her if needed. In the first 9 weeks that was really the first time we have had to consider 'The List' but it certainly wont be the last. We will have to make sure our Pediatrician's office has it and is familiar with it anytime they prescribe anything for Audrey.
As indicated by this entry title, we were thrilled to finally get the results back from Audrey's DNA testing this week. All along the dr's have suspected she was most likely Long QT type 2 or type 3 and the test results confirmed that she is positive for type 3 based on the mutation of the SCN5A gene. Type 3 is an abnormality of the sodium ions in her heart cells. It was definitely emotional to finally get this confirmation of her diagnosis. On one hand we were unhappy to hear it was type 3 but on the other hand we were glad it was one of the known gene mutations so that there is some medical history to help guide what treatments will best help Audrey. Type 3 is quite a bit more uncommon than types 1 and 2, I have seen numbers around 5-10% of the diagnosed LQTS cases. Type 3 event triggers tend to be a low heart rate such as when one is sleeping as opposed to some of the other types that could be triggered by sudden loud sounds or events. Luckily Audrey does have the pacer which will always keep her heartrate above whatever the low end settings are.
We have only received the DNA results over the phone and have not met with our Doctors to discuss the details yet. We'll have to see how this impacts the treatment Audrey is receiving because a lot of the articles I read tend to say the beta blockers are not very effective treatment yet the Mexiletine is, which targets the sodium channels. They wanted to keep Audrey on both the beta blockers and Mexiletine until we had test results because we were having good results and we didn't yet know which type to specifically treat. There is a possibility we could back off of the beta blockers but we'll have to see. We meet with our EP doctors once again on the 26th to discuss the details of the DNA results, how Audrey has been doing, and where we go from here.
If anyone is interested in reading up on LQTS and specifically Audrey's type 3 you can find some information at these links...
American Heart Assoc - around LQTS 3 and Sodium channel
I'll try to post some new pictures of Audrey in the next couple days.
- Mark
Tuesday, July 27, 2010
EP checkup
We were looking forward to taking Audrey to her Electro-physiologist appointment down at Egleston today. It's been a full month since we got a true look at how her heart is truly doing. They first weighed her and she was up to 7 lb 7 oz, which was up 12 ounces from last Tuesday's pediatric appointment, just a week ago. That was great news. As I have mentioned in the past, the pacemaker not only paces the heart but it also collects all of the data. Her data looked great! She did not have a single instance of tachycardic heart rate, above the 180 bpm range. The pacemaker was pacing the upper chambers 56% of the time and the other time the heart was recharging and sending the signal on its own all the way through the lower chambers. The doctor was really pleased with the results. Due to her growth and development they have upped her medication dosages to keep up with her size gain and also reduced the lower limit of the pacer to 100 bpm rather than 120. We go back in another month for our next follow-up. It was definitely very positive results and a great feeling.
Childrens Healthcare also asked us if we would be willing to meet with their media department to document our entire story of Audrey. They would like to use it in some variety of fundraising efforts, since they are a non-profit hospital. They said it could entail them coming to our house to take some photos of the whole family. They were not sure what format exactly it would be documented but could be some glossy brochure, website, or something like that. We told them that we absolutely would do anything of that sort as we are extremely appreciative of the care we have been provided throughout.
I know these posts are few and far between these days but that is really because thing are somewhat calm and stable and we love it.
- Mark
Wednesday, July 21, 2010
Growing and Baptism
It's so hard to believe Audrey hit 5 weeks old this past weekend already. Time really flies by when you are in a constant sleep-deprived stupor. Audrey continues to do great and is eating and growing like a champ. Amanda took her to a follow-up at the pediatrician yesterday, 10 days after our last visit, to make sure all was continuing on the right path with her eating and growth. She had put on a whopping 10 ounces in the past days and went from 6pounds 1oz to 6pounds 11oz. We were thrilled as an ounce a day was at the top level of what they described as possible for expected growth. Amanda and I can really tell just holding and looking at her that she is filling out and growing. She is also starting to become more awake and vocal which we find refreshing. Being premature, on medication, and through surgery we felt like all she did was sleep. I think she must be realizing that she's going to have to start making some noise to hang in there with the constant levels of screaming and yelling coming from Avery and Ryan. I never imagined I would welcome the sound of a baby crying but with Audrey it is another feeling of normalcy.
Audrey was baptized at our church, Roswell Methodist, this past Sunday 7/18. We were lucky that one of our good friends had the spot reserved for her own daughter's baptism and let us know before officially giving it up so we could jump on it once she did. We were talking to the preacher beforehand in the Welcome Center area and gave him a recap of Audrey's story. During the ceremony he held her and walked her around the church to introduce her to the congregation. Doing so, he was telling everyone her story and he got a little choked up which caused me to get a little teary-eyed as well. It was certainly one of those moments that we found hard to imagine reaching but there we all were. The ceremony was really nice and Audrey did great.
We're looking forward to going back to the EP doctor's visit on next Tuesday to take a detailed look at how her heart is doing and if there is any changes to be made. They mentioned that there is a good chance we will modify the pacer rate settings to be a little lower as she is growing.
- Mark
Audrey at 5 weeks...
All five of us...
Baptism...
With Audrey's cousin, Katherine...
A big Yawn...
Audrey was baptized at our church, Roswell Methodist, this past Sunday 7/18. We were lucky that one of our good friends had the spot reserved for her own daughter's baptism and let us know before officially giving it up so we could jump on it once she did. We were talking to the preacher beforehand in the Welcome Center area and gave him a recap of Audrey's story. During the ceremony he held her and walked her around the church to introduce her to the congregation. Doing so, he was telling everyone her story and he got a little choked up which caused me to get a little teary-eyed as well. It was certainly one of those moments that we found hard to imagine reaching but there we all were. The ceremony was really nice and Audrey did great.
We're looking forward to going back to the EP doctor's visit on next Tuesday to take a detailed look at how her heart is doing and if there is any changes to be made. They mentioned that there is a good chance we will modify the pacer rate settings to be a little lower as she is growing.
- Mark
Audrey at 5 weeks...
All five of us...
Baptism...
With Audrey's cousin, Katherine...
A big Yawn...
Tuesday, July 13, 2010
Interesting Article about Long QT
Amanda came across this article from the WSJ talking about Long QT risk running in a family and how genetic testing can be beneficial in diagnosing the condition. As I mentioned yesterday, we are still awaiting Audrey's genetic test results and before Audrey was born Amanda's blood was drawn for testing and came back negative for all of the known mutations. Once Audrey's results come back there is a good chance we could have Avery and Ryan and myself tested as well. Having her specific results will narrow down the tests that would need to be done rather than testing for the full spectrum of possibilities on each of us.
The article just mentions Long QT in the broad sense without going into the different types and specific symptoms of each type. The risk and treatments do vary quite a bit through the different types. Nonetheless, the article provides an interesting overview on a specific family being affected by Long QT and provides some high level insight into what we are juggling.
http://online.wsj.com/article/SB10001424052748703283004575363070206768854.html
- Mark
The article just mentions Long QT in the broad sense without going into the different types and specific symptoms of each type. The risk and treatments do vary quite a bit through the different types. Nonetheless, the article provides an interesting overview on a specific family being affected by Long QT and provides some high level insight into what we are juggling.
http://online.wsj.com/article/SB10001424052748703283004575363070206768854.html
- Mark
Monday, July 12, 2010
4 weeks old today!
Our very loyal blog followers have been telling me I am slacking on the blog post updates. I have definitely slowed down in the number of updates and posts but that is really attributed to the fact that we are now home and things have been stable and gone really well with Audrey. We just haven't had much in the way of new developments over the past week, which is really a great thing. We are able to just focus on getting into the swing of the normal newborn baby duties as much as possible.
Amanda did take Audrey to her followup Pediatrician appointment on Friday to see how her weight gain was going. They decided to go ahead and do her 1 month appointment since it was just a few days after that. While at the 1 month appointment, the nurse was running through the normal things such as her bottom being a little pink. It's so hard to feel like that is really an issue to be concerned about at this point. Her weight had increased up to 6lb 1 oz which was good and we feel like we can definitely tell when looking at her and holding her but they want to see a faster rate of weight gain. They want us to feed her more often than the 3 hour intervals we have been doing. Once she starts gaining more weight we'll have to modify the medicine dosages we are currently giving too. Otherwise, they thought she was doing well and were impressed with her 'tone' for her age, which I believe was her muscle and head control. We have our followup with the EP's in two more weeks and we're still waiting on Audrey's DNA testing results to find out her exact type of Long QT.
I can't believe Audrey is already a month old today! This has definitely been one of the more chaotic, emotional, frantic, sleep-deprived months that we have experienced in our lives but as I have mentioned before, we are extremely grateful to be on the positive side of the possible outcomes right now.
Thank you again to everyone for all of the help and support we have gotten. We truly do appreciate it all.
- Mark
Amanda did take Audrey to her followup Pediatrician appointment on Friday to see how her weight gain was going. They decided to go ahead and do her 1 month appointment since it was just a few days after that. While at the 1 month appointment, the nurse was running through the normal things such as her bottom being a little pink. It's so hard to feel like that is really an issue to be concerned about at this point. Her weight had increased up to 6lb 1 oz which was good and we feel like we can definitely tell when looking at her and holding her but they want to see a faster rate of weight gain. They want us to feed her more often than the 3 hour intervals we have been doing. Once she starts gaining more weight we'll have to modify the medicine dosages we are currently giving too. Otherwise, they thought she was doing well and were impressed with her 'tone' for her age, which I believe was her muscle and head control. We have our followup with the EP's in two more weeks and we're still waiting on Audrey's DNA testing results to find out her exact type of Long QT.
I can't believe Audrey is already a month old today! This has definitely been one of the more chaotic, emotional, frantic, sleep-deprived months that we have experienced in our lives but as I have mentioned before, we are extremely grateful to be on the positive side of the possible outcomes right now.
Thank you again to everyone for all of the help and support we have gotten. We truly do appreciate it all.
- Mark
Monday, July 5, 2010
July 4th Weekend
Audrey is doing great and had a good 4th of July weekend at home. She is continuing to eat really well and sleep even better. We are usually waking her every 3 hours to eat except for the 10pm-12am timeframe in which she tends to be wide awake and ravenous. We have adjusted the two medications to be on an identical 4 times-a-day interval to simplify things and started actually mixing it in a bottle to give to her rather than directly into her mouth using a syringe. Being that she is premature and still tiny, the pediatricians wanted us to bring her back this upcoming week to make sure that she is continuing to get enough food and growing. Overall, she is really doing great and tolerating her crazy loud two older siblings perfectly.
We were able to take her to see the Roswell fireworks on the 4th. We had to run it by the EP doctors last week to see what they thought because we had read that loud startling noises are a trigger of arrhythmia's for some types of Long QT. They said they thought it would be OK but once we were there it did make Amanda a little more nervous than she expected and she tried to keep Audrey's ears covered as much as possible.
We still await the results of Audrey's DNA testing to find out what exact type of Long QT she has which will clarify a more precise long term treatment plan. That generally takes about 6-8 weeks so we have probably another month or so.
- Mark
Thursday, July 1, 2010
Followup Appointment recap
We had our followup with both the Surgeons and also with the Electrophysiologists on Wednesday. Surgery group thought all looked great with Audrey's healing. They removed the remaining tape and it really has healed up nicely. There are no stitches, clamps, or anything else remaining there. We are officially done meeting with that group for now until the next time the pacer needs replacement. They have said on average that the battery lasts about 5 years, at which point we will have to replace it with a new unit. They will only need to replace the unit itself at that time and the leads going to the heart will stay in place and be connected to the new pacer so it will be a less invasive procedure then.
The meeting with the EP's was what we were looking forward to so that we could see how her heart was doing. They both did an ekg to measure the rhythm and they collected all the data from the pacemaker about how her heart has done since last week when we left. Audrey's QT interval still measures long on the ekg even with the medication, somewhere in the 500 millisecond range. Anything above 440 milliseconds is considered prolonged. After birth Audrey's interval was up in the high 600's to 700 millisecond range so the medicine has definitely helped to shorten it a good amount. The good news is that the pacemaker helps to keep her rhythm normal despite her long QT interval. We were able to see a lot of the downloaded information from the pacemaker and overall the stats were really good and was about the same as when we left the hospital last week. We were relieved to see that nothing unexpected was occurring that we weren't able to see at home. Her heart was staying in a sinus rhythm right around in the 120-130 range. Things were good enough that we aren't going back for our next followup for 4 weeks. In the meantime we will be able to upload the information from Audrey's pacer through the phone line that they can view.
There was one conflicted feeling I left with. Audrey's case is so high profile and rarely seen that all of the doctor's were involved, some much more than others, but all were aware of it at least. When we are there it's like we are celebrities and they are all so extremely nice and stop by to see us. Everyone from the big group's chief of cardiology down to all of our specific cardiac doctors came by and said Hi. They were really glad to see that both she and us were doing well and one even told us how our story was being told in some fundraiser events with donors. On one hand I have welcomed as many doctors opinions as possible during our journey, especially with it being a rare diagnosis. On the other hand, just as things were starting to feel somewhat better and normal (as much as it can), having all of those doctors come by was just a reminder of how rare Audrey's case is and makes us feel that the odds are not on our side. We left feeling really good and relieved about how Audrey is doing and the care she is getting but just a little conflicted at the same time.
- Mark
The meeting with the EP's was what we were looking forward to so that we could see how her heart was doing. They both did an ekg to measure the rhythm and they collected all the data from the pacemaker about how her heart has done since last week when we left. Audrey's QT interval still measures long on the ekg even with the medication, somewhere in the 500 millisecond range. Anything above 440 milliseconds is considered prolonged. After birth Audrey's interval was up in the high 600's to 700 millisecond range so the medicine has definitely helped to shorten it a good amount. The good news is that the pacemaker helps to keep her rhythm normal despite her long QT interval. We were able to see a lot of the downloaded information from the pacemaker and overall the stats were really good and was about the same as when we left the hospital last week. We were relieved to see that nothing unexpected was occurring that we weren't able to see at home. Her heart was staying in a sinus rhythm right around in the 120-130 range. Things were good enough that we aren't going back for our next followup for 4 weeks. In the meantime we will be able to upload the information from Audrey's pacer through the phone line that they can view.
There was one conflicted feeling I left with. Audrey's case is so high profile and rarely seen that all of the doctor's were involved, some much more than others, but all were aware of it at least. When we are there it's like we are celebrities and they are all so extremely nice and stop by to see us. Everyone from the big group's chief of cardiology down to all of our specific cardiac doctors came by and said Hi. They were really glad to see that both she and us were doing well and one even told us how our story was being told in some fundraiser events with donors. On one hand I have welcomed as many doctors opinions as possible during our journey, especially with it being a rare diagnosis. On the other hand, just as things were starting to feel somewhat better and normal (as much as it can), having all of those doctors come by was just a reminder of how rare Audrey's case is and makes us feel that the odds are not on our side. We left feeling really good and relieved about how Audrey is doing and the care she is getting but just a little conflicted at the same time.
- Mark
Tuesday, June 29, 2010
15 days old
The blog posts have tailed off quite a bit now that we are home and we have been swamped adjusting to the crazy routine. Audrey has been doing great and it hasn't felt like there was much in the way of new updates to write about. She is eating great from the bottle and sleeping very well.
Ryan and Avery continue to be completely in love with her and want to constantly check on her. Ryan will walk up and rub her head and say "little baby Audrey is so cute". Avery is always the helper and wants to hold her or help feed her constantly.
We go back to Egleston on Wednesday for our post-op meeting with the surgeon and also our first followup meeting with the electrophysiologists. We will be meeting with the EP's weekly or biweekly for a while until everyone is comfortable and we see that we can reduce the frequency. It's been really odd to not be able to lookup at a monitor and see her heart rhythm at any second of the day since she got home. Our only view into how her heart is doing right now is through observing her signs such as breathing or coloring or using a stethoscope to listen for ourselves. We haven't seen anything abnormal but it will be good to have her get an ekg again tomorrow. We are supposed to be getting a tool that looks like a little computer mouse that we hold up to her skin where the pacemaker is and it reports all of her heart rhythm data up to a central server that any of the doctors can take a look at. We'll be doing this on regular intervals so they have the data at all times.
I always think back to the discussion I had with the EP on the day we were being discharged and I was trying to ask him about anything and everything I could before we were to have her home without all of the monitoring she had been on for the first couple weeks. I half-jokingly asked him "so what do we need to do?" and his response was "just take her home and love her". There was quite a bit more discussed as well but that basic instruction sticks with us more than many of the others that got lost in the overabundance of information.
- Mark
Ryan and Avery continue to be completely in love with her and want to constantly check on her. Ryan will walk up and rub her head and say "little baby Audrey is so cute". Avery is always the helper and wants to hold her or help feed her constantly.
We go back to Egleston on Wednesday for our post-op meeting with the surgeon and also our first followup meeting with the electrophysiologists. We will be meeting with the EP's weekly or biweekly for a while until everyone is comfortable and we see that we can reduce the frequency. It's been really odd to not be able to lookup at a monitor and see her heart rhythm at any second of the day since she got home. Our only view into how her heart is doing right now is through observing her signs such as breathing or coloring or using a stethoscope to listen for ourselves. We haven't seen anything abnormal but it will be good to have her get an ekg again tomorrow. We are supposed to be getting a tool that looks like a little computer mouse that we hold up to her skin where the pacemaker is and it reports all of her heart rhythm data up to a central server that any of the doctors can take a look at. We'll be doing this on regular intervals so they have the data at all times.
I always think back to the discussion I had with the EP on the day we were being discharged and I was trying to ask him about anything and everything I could before we were to have her home without all of the monitoring she had been on for the first couple weeks. I half-jokingly asked him "so what do we need to do?" and his response was "just take her home and love her". There was quite a bit more discussed as well but that basic instruction sticks with us more than many of the others that got lost in the overabundance of information.
- Mark
Saturday, June 26, 2010
We got Audrey home in the early afternoon on Friday and all has been great. We are still working on how to best schedule the many medication intervals and feedings and I imagine that will get much easier with time but its been a little overwhelming initially. It all started with the pharmacy that delivered the beta-blockers medication to us mislabeling the bottle with instructions to give her a dose many many times greater than what she should be getting. We were able to get it cleared up before giving her the first dose on Friday but not until after calls back to hospital, the pharmacy, and calculations done between the discharge papers, actual prescrip, and bottle label. That was stressful and a quick lesson for us right off the bat to double check everything.
She has done great with everything. She has been eating very well although its a struggle to get her to wake up to eat sometimes. We're not sure how long she would go between feedings on her own but we are trying to feed her every few hours right now.
Avery and Ryan have definitely loved having both Audrey and Mommy back home. They are constantly wanting to check on her, help feed her, and give her kisses on her head. It's a little surreal to actually have the five of us now at home and not have to pack up any bags to head back out to the hospital immediately. We can sit on the couch and catch our breath and relax, somewhat. I was telling Amanda that it almost scares me how normal everything feels with Audrey and that I almost forget about her condition sometimes.
She has done great with everything. She has been eating very well although its a struggle to get her to wake up to eat sometimes. We're not sure how long she would go between feedings on her own but we are trying to feed her every few hours right now.
Avery and Ryan have definitely loved having both Audrey and Mommy back home. They are constantly wanting to check on her, help feed her, and give her kisses on her head. It's a little surreal to actually have the five of us now at home and not have to pack up any bags to head back out to the hospital immediately. We can sit on the couch and catch our breath and relax, somewhat. I was telling Amanda that it almost scares me how normal everything feels with Audrey and that I almost forget about her condition sometimes.
- Mark
Friday, June 25, 2010
Finally!
A day we found hard to imagine ever coming has finally come true. We're taking Audrey home today.
- mark
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Thursday, June 24, 2010
Friday is the big day
Audrey had a great day today. She was fed up with that tube being run down her throat for feeding and meds and has now downed her last 5 bottles and meds fully. She also pulled the NG tube out during her bath and we havent bothered putting it back in so we are hoping she keeps it up. Her heart rhythm was nice and consistent today as well without any issues at all. It was definitely a good feeling that all went well today considering the current plan is for us to take Audrey home tomorrow. We'll meet with the doctors in the morning and make certain all readings are still as expected and if so we'll be loading her up in the carseat that dwarfs her and taking her home. It's very hard to believe this day has finally come after having been in one hospital or another for the past couple months. We will be extremely nervous initially and it's hard to imagine that we'll sleep at all but I'm sure it will get easier over time. We'll have followup appointments with both the Cardiothoracic surgery group and with the EP Cardiology group next week and we're not yet sure of how often after that.
We really can't say enough about how great Childrens Healthcare of Atlanta has been throughout. All of the doctors and nurses and facilities have been excellent.
- Mark
We really can't say enough about how great Childrens Healthcare of Atlanta has been throughout. All of the doctors and nurses and facilities have been excellent.
- Mark
Wednesday, June 23, 2010
9 Days Old
Things have changed quite a bit now that we are in the stepdown unit. As you saw in the pic in the last post, we now have our own private room and are able to hold Audrey, feed her, and change her ourselves rather than the nurses and doctors doing those things for us. She is still sleeping a ton at this point being that she is both premature and also has had surgery that she is still recovering from. It's always a challenge to wake her for feedings every few hours but she is getting progressively better at it and taking more and more from the bottle.
There was some unexpected ventricular beats late last night that resulted in some medication and pacer tweaking this morning and today her rhythm was great all day. It freaked Amanda out quite a bit to see that on the monitor being that they are telling us we are so close to going home. It is so extremely scary to think about the negative possibilities after being under such close watch for so long now. I met with one of the EP (electrophysiologist) doctors today to talk about everything and go through a long list of questions I had jotted down last night. They are the cardiologists specializing in the heart's electrical system and rhythm and are the ones plotting our course of action. He spent a good amount of time talking through things and he was very reassuring that they weren't going to send us home until they felt very good about where things stand. Audrey will forever be in a high risk category with this condition and although it cannot be corrected through surgery, it can be treated through the medication and pacemaker. Unlike so many other illnesses that are widely researched and where there is a large pool of documented cases to gather information from, this condition is extremely rare and there just is not that wealth of knowledge on treating it. Many cases of Long QT are fatal before being recognized in a person so we feel extremely fortunate to have discovered it gotten treatment when we did.
Both kids came up and visited tonight and are extremely sweet and gentle with Audrey. Avery especially looks forward to the day when Audrey comes home. If all continues to go well they are telling us it could be by this weekend.
- Mark
There was some unexpected ventricular beats late last night that resulted in some medication and pacer tweaking this morning and today her rhythm was great all day. It freaked Amanda out quite a bit to see that on the monitor being that they are telling us we are so close to going home. It is so extremely scary to think about the negative possibilities after being under such close watch for so long now. I met with one of the EP (electrophysiologist) doctors today to talk about everything and go through a long list of questions I had jotted down last night. They are the cardiologists specializing in the heart's electrical system and rhythm and are the ones plotting our course of action. He spent a good amount of time talking through things and he was very reassuring that they weren't going to send us home until they felt very good about where things stand. Audrey will forever be in a high risk category with this condition and although it cannot be corrected through surgery, it can be treated through the medication and pacemaker. Unlike so many other illnesses that are widely researched and where there is a large pool of documented cases to gather information from, this condition is extremely rare and there just is not that wealth of knowledge on treating it. Many cases of Long QT are fatal before being recognized in a person so we feel extremely fortunate to have discovered it gotten treatment when we did.
Both kids came up and visited tonight and are extremely sweet and gentle with Audrey. Avery especially looks forward to the day when Audrey comes home. If all continues to go well they are telling us it could be by this weekend.
- Mark
Tuesday, June 22, 2010
8 Days old
Abbreviated post tonight because I am exhausted. I added work back into my mix this week and I need some sleep badly. Audrey did move into her stepdown room today around lunchtime and Amanda has been there with her all afternoon. I am attaching a couple pics Amanda was able to take today. Still getting most of her feedings through the tube. Audrey is doing well overall but its extremely nerve racking to think about bringing her home still and the unknown we will be facing. Every little irregular heart rhythm we see on the monitor freaks us out. Amanda and I will be swapping out in the morning. I'll post more tomorrow.
- Mark
- Mark
Monday, June 21, 2010
Baby got a brand new bed
In yesterday's post I was saying that things seem to move along really slowly and we have to remain patient. When Amanda got here this morning we were shocked how much had changed, for the better for certain. She had the belly button IV and all of the others, except one in her arm, completely removed. They had completely weened her off of the Lidocaine allowing the belly button IV removal, that was the big one. The Lidocaine will be replaced by the Mexiletine starting tomorrow. This was a HUGE step allowing us to sit and hold her in her arms and even feed her some. It was amazing what a big step it felt like to be able to hold her without so many wired intrusions. She still isnt eating much from a bottle so they are still doing that through the tube but she did show signs of improvement on that today also by taking some.
As you can see in the picture below, Audrey got herself a nice new crib also. She is no longer in the heatlamp bed and is keeping her temperature stable on her own pretty well. This is the bed that she will be transitioned over to the stepdown ward in. Tomorrow!! So she'll be moved over to a room that one of us will stay in with her. It's very similar to a post-partum room with a small couch-bed, tv, and bathroom. They'll use a telemetry device to be able to constantly monitor her heart rhythm but its a small mobile device so we'll be able to hold her, carry her around, and she'll be somewhat mobile. Its a small box with a few wires going to stickers that will be placed on her chest, just like an ekg attaches, that transmits to the monitors. Few steps closer to taking Audrey home.
Progress feels great.
- Mark
As you can see in the picture below, Audrey got herself a nice new crib also. She is no longer in the heatlamp bed and is keeping her temperature stable on her own pretty well. This is the bed that she will be transitioned over to the stepdown ward in. Tomorrow!! So she'll be moved over to a room that one of us will stay in with her. It's very similar to a post-partum room with a small couch-bed, tv, and bathroom. They'll use a telemetry device to be able to constantly monitor her heart rhythm but its a small mobile device so we'll be able to hold her, carry her around, and she'll be somewhat mobile. Its a small box with a few wires going to stickers that will be placed on her chest, just like an ekg attaches, that transmits to the monitors. Few steps closer to taking Audrey home.
Progress feels great.
- Mark
Sunday, June 20, 2010
Fathers Day
Not many new details to post on Father's Day. Since yesterday evening the nurses have been trying to feed Audrey bottles but she generally won't wake up to drink them so they have had to feed her through a tube fed down into her throat while she continues sleeping to ensure that she can handle it all fine, keeps it down, and digests it. She has handled that well allowing them to start on the oral beta-blocker medication which will slow the overall heartrate down. This will take a day or two to really take effect. They have also begun taking down the dosage on the lidocaine slightly to start weening her off of that. The doctors will then decide whether we try the beta-blocker/pacemaker combination solely or also add the mexiletine medication as Amanda was taking while in the hospital. Each of the steps we are taking now then requires close monitoring for an amount of time after the change so it feels like the process is all moving so slow but we just have to remain patient.
A big thank you to everyone for all of the support and encouragement.
- Mark
A big thank you to everyone for all of the support and encouragement.
- Mark
Saturday, June 19, 2010
Day 6
After leaving the hospital late Friday night I was very saddened that little Audrey had not yet been able to breathe on her own and get the ventilator off. Amanda woke up around 6am today and called back and spoke with the nurse to see how she did in the overnight breathing test and she was still not quite ready. We dropped Avery and Ryan off and headed back this morning expecting to see her about the same but were ecstatic to walk in and be greeted by the sight of her without it. Audrey made some great strides today in her recovery from the surgery. She is now breathing completely on her own once again and also began to feed once again from a bottle. She was much more active, moving around once again and opening her eyes and looking around. Fully eating and keeping it all down is now priority #1. Once she gets the feedings going smoothly and consistently we'll be able to start transitioning to the oral medications that she needs. She'll be able to transition from the Lidocaine over to the Mexiletine and also begin taking the beta-blockers. Moving over to the oral medications will get the many IV's out of her also and we'll actually get to hold her in our arms.
Amanda spent the whole afternoon at Audrey's side and when I went back to get her I took both Avery and Ryan with me. This would be Ryan's first time seeing his new sister and Avery's second. We were avoiding it while she had the ventilator and all of the other post-surgery connections but since she was able to lose some of those it was definitely a good opportunity. They were both very gentle and were rubbing Audrey's head and touching her little feet. Both kids are handling it so well and really look forward to her coming home one day soon.
I guess I should have captioned the pics in the post yesterday somewhat but the last pic is of a dual-chamber pacemaker like the one implanted in Audrey. It gives you an idea of the size of it and the two leads then go to her atria and ventricle chambers.
- Mark
Amanda spent the whole afternoon at Audrey's side and when I went back to get her I took both Avery and Ryan with me. This would be Ryan's first time seeing his new sister and Avery's second. We were avoiding it while she had the ventilator and all of the other post-surgery connections but since she was able to lose some of those it was definitely a good opportunity. They were both very gentle and were rubbing Audrey's head and touching her little feet. Both kids are handling it so well and really look forward to her coming home one day soon.
I guess I should have captioned the pics in the post yesterday somewhat but the last pic is of a dual-chamber pacemaker like the one implanted in Audrey. It gives you an idea of the size of it and the two leads then go to her atria and ventricle chambers.
- Mark
Friday, June 18, 2010
5 days old
Amanda and I spent a lot of the day today at Audreys side in the CICU with huge hopes of seeing her shed some of the aftermath of the surgery. They told us yesterday that they werent quite sure how long it would take her to shake off the anesthesia and begin to regain activity. They explained that it takes some kids as much as a day or two. Apparently Audrey is on the longer side of that timeframe. She is still very sleepy and still had the full arsenal of IV's, ventilator, and medications going strong. They did a test of her breathing this afternoon but she wasnt ready to breathe on her own without assistance yet. They were able to take out the one chest tube so that was one baby step forward. We had to leave to get Avery and Ryan in the late afternoon without seeing very much change in her condition from the morning.
I went back this evening in hopes that after another test on her breathing they would be able to get her off the ventilator but after trying once again she was still not ready to go on her own. That was heartbreaking for me to see as I cant stand seeing that tube down her throat more than any of the others. The nurse said they will try again around 2am tonight so I am really really hoping that she'll get it going.
Below are a few pics from the past few days...
- Mark
Thursday, June 17, 2010
Huge Day!
Today was full of huge strides for the Kochs. We started by getting Amanda and all of her compiled stuff from 40 days there moved out and into the car. It was a little odd to be going through the whole process of pulling the car up to that curb, pushing the cart full of stuff out, and having the Northside helper push Amanda out in the wheelchair, but not have our baby to take with us also. We were in a such a big rush to get down to Egleston that we didn't get caught up in it though.
We arrived at Egleston around lunchtime and Audrey was still doing really well. In prep for the pacemaker surgery they could not feed her after her first morning feeding at 7 or 8 am. She seemed ravenous and cranky which provided Amanda and I a good opportunity to try and work with her to calm her as much as possible. The surgery was supposed to be around 4:00 but ended up actually not being until around 5:30 which made for a long day of anticipation. Finally they walked us down to the operating room while they wheeled her and then left us in the family waiting room while they pushed her through the doors. It is extremely emotional to see your 4 day old child wheeled into the operating room for surgery. They called us with updates during the procedure and by about 7:30 the surgeon came out and told us they were done and it had gone very well. After a slight wait we were able to go back into the CICU to see her although she was still asleep from the meds and on a ventilator to assist the breathing. As she wakes up tonight they will attempt to get her breathing on her own again and off of the ventilator and eating once again. We were extremely relieved and excited to be over this hump that we figured was coming one day, but just didnt expect it to be this soon. She will now be able to safely take the beta-blockers to help with the elongated QT interval. The pacemaker itself is about the size of a silver dollar and in her abdomen area with two leads running to her heart. The technology is pretty amazing and we saw it in effect right away looking at Audrey's heartrate monitors.
Having a long QT interval is generally an inherited trait. A month ago we sent Amanda's blood away for genetic testing to determine if she had the specific genes associated with long QT also. Some additional huge news that we got today was that Amanda's genetic testing results came back NEGATIVE so we do not need to be concerned about her heart also. Big big relief.
Overall, a great day of progress and the kids were ecstatic to have Mommy back at home tonight to help with bedtime.
- Mark
We arrived at Egleston around lunchtime and Audrey was still doing really well. In prep for the pacemaker surgery they could not feed her after her first morning feeding at 7 or 8 am. She seemed ravenous and cranky which provided Amanda and I a good opportunity to try and work with her to calm her as much as possible. The surgery was supposed to be around 4:00 but ended up actually not being until around 5:30 which made for a long day of anticipation. Finally they walked us down to the operating room while they wheeled her and then left us in the family waiting room while they pushed her through the doors. It is extremely emotional to see your 4 day old child wheeled into the operating room for surgery. They called us with updates during the procedure and by about 7:30 the surgeon came out and told us they were done and it had gone very well. After a slight wait we were able to go back into the CICU to see her although she was still asleep from the meds and on a ventilator to assist the breathing. As she wakes up tonight they will attempt to get her breathing on her own again and off of the ventilator and eating once again. We were extremely relieved and excited to be over this hump that we figured was coming one day, but just didnt expect it to be this soon. She will now be able to safely take the beta-blockers to help with the elongated QT interval. The pacemaker itself is about the size of a silver dollar and in her abdomen area with two leads running to her heart. The technology is pretty amazing and we saw it in effect right away looking at Audrey's heartrate monitors.
Having a long QT interval is generally an inherited trait. A month ago we sent Amanda's blood away for genetic testing to determine if she had the specific genes associated with long QT also. Some additional huge news that we got today was that Amanda's genetic testing results came back NEGATIVE so we do not need to be concerned about her heart also. Big big relief.
Overall, a great day of progress and the kids were ecstatic to have Mommy back at home tonight to help with bedtime.
- Mark
Success
We Just talked to Surgeon after the surgery and all went well. She is recovering and we are now waiting to get to see her again when she gets back settled in the CICU.
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Timeframe
We are currently scheduled for around 4:00 or 4:30 for Audrey's surgery. The timing is all flexible based on the other surgery's so it could be earlier or later also. Audrey looks good and is doing well and we really look forward to getting it underway and over.
We got Amanda officially checked out of Northside and she is here at Egleston as well.
- Mark
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Wednesday, June 16, 2010
Audrey Claire Koch
Yep, thats her name. Done deal. She will no longer be BabyGirl on all of the name tags and documents at Egleston.
Today was a big day in quite a few ways. It started out with Amanda and I agreeing on the name Audrey for her. We were down to a few that we really liked a lot and were having a tough time pulling the trigger on picking one of the three. Amanda finally got me to buy into the notion of looking at the meaning of a name and we loved the meaning behind Audrey being 'Noble Strength'.
When I got there this morning to see how she was doing, she was really just about the same as when I left last night. Her heart was still beating in the 2:1 heart block rhythm and they had gone up on her lidocain level once again. Her blood pressure remained good and she was eating fine. I know I have never gone into any real specifics on this blog and always been relatively vague about what Audrey is facing. That was partly because they couldnt accurately diagnose anything until she was out and they could do an EKG on her heart which was impossible within Amanda. It was also partly because we were always hoping for things to change for the better on their own. The reason she has the 2:1 block rhythm is because she has what is referred to as a Long QT interval in her heart's electrical system caused by abnormal heart cell structures. The QT interval is the time it takes the heart from polarization to repolarization, from when it beats once to charge back up and beat again. This delayed repolarization causes her atria to beat twice before the ventrical is ready to beat. When you look at her heartrate on the monitors it is around 60 because it is only picking up the slower ventricular rate whereas the atria rate is actually beating at twice that speed. Luckily her heart is physically fine so she gets a good squeeze and her blood pressure is remaining fine but the long QT interval makes her predisposed to very fast heart rhythms as we saw early on that landed Amanda at Northside.
I was able to pick Amanda up from Northside and Madeline met us there with Avery so we could all go visit Audrey together. It was super emotional for Amanda to get to see her and the Dr's made an exception to the rule forbidding not being able to hold the baby with the belly button IV and let Amanda hold and feed her. Both Avery and Madeline were able to come in separately also as they only allow two visitors bedside in the CICU at a time. It was awesome for them all to get to see her, touch her, and hold her as I have gotten to the past couple of days.
During Amanda's visit we did talk with the electrophysiologist and and cardiac surgeon and they highly recommended going ahead and inserting a pacemaker to help her rhythm. They really want to treat the Long QT with beta blockers also but with her low heartrate they cannot because it will slow it down further. Adding the pacer will balance out the beta blockers treatment and keep the rhythm moving along, hopefully back at 1:1. We are currently scheduled for the surgery on Thursday afternoon and it will take 24-48 hours recovery there in the CICU. They describe the procedure as being relatively simple and quick and are confident about the benefits we'll see short and long term. The electrophysiologist expressed a lot of confidence that Audrey is going to do well through this surgery and in the long run also.
Amanda will be leaving Northside tomorrow finally but we'll be heading straight over to Egleston to both be there for this surgery. The kids and I ( and Madeline with how much she has been here) are thrilled to get her out of Northside and free again.
I'll try to post some pics tomorrow.
- Mark
Today was a big day in quite a few ways. It started out with Amanda and I agreeing on the name Audrey for her. We were down to a few that we really liked a lot and were having a tough time pulling the trigger on picking one of the three. Amanda finally got me to buy into the notion of looking at the meaning of a name and we loved the meaning behind Audrey being 'Noble Strength'.
When I got there this morning to see how she was doing, she was really just about the same as when I left last night. Her heart was still beating in the 2:1 heart block rhythm and they had gone up on her lidocain level once again. Her blood pressure remained good and she was eating fine. I know I have never gone into any real specifics on this blog and always been relatively vague about what Audrey is facing. That was partly because they couldnt accurately diagnose anything until she was out and they could do an EKG on her heart which was impossible within Amanda. It was also partly because we were always hoping for things to change for the better on their own. The reason she has the 2:1 block rhythm is because she has what is referred to as a Long QT interval in her heart's electrical system caused by abnormal heart cell structures. The QT interval is the time it takes the heart from polarization to repolarization, from when it beats once to charge back up and beat again. This delayed repolarization causes her atria to beat twice before the ventrical is ready to beat. When you look at her heartrate on the monitors it is around 60 because it is only picking up the slower ventricular rate whereas the atria rate is actually beating at twice that speed. Luckily her heart is physically fine so she gets a good squeeze and her blood pressure is remaining fine but the long QT interval makes her predisposed to very fast heart rhythms as we saw early on that landed Amanda at Northside.
I was able to pick Amanda up from Northside and Madeline met us there with Avery so we could all go visit Audrey together. It was super emotional for Amanda to get to see her and the Dr's made an exception to the rule forbidding not being able to hold the baby with the belly button IV and let Amanda hold and feed her. Both Avery and Madeline were able to come in separately also as they only allow two visitors bedside in the CICU at a time. It was awesome for them all to get to see her, touch her, and hold her as I have gotten to the past couple of days.
During Amanda's visit we did talk with the electrophysiologist and and cardiac surgeon and they highly recommended going ahead and inserting a pacemaker to help her rhythm. They really want to treat the Long QT with beta blockers also but with her low heartrate they cannot because it will slow it down further. Adding the pacer will balance out the beta blockers treatment and keep the rhythm moving along, hopefully back at 1:1. We are currently scheduled for the surgery on Thursday afternoon and it will take 24-48 hours recovery there in the CICU. They describe the procedure as being relatively simple and quick and are confident about the benefits we'll see short and long term. The electrophysiologist expressed a lot of confidence that Audrey is going to do well through this surgery and in the long run also.
Amanda will be leaving Northside tomorrow finally but we'll be heading straight over to Egleston to both be there for this surgery. The kids and I ( and Madeline with how much she has been here) are thrilled to get her out of Northside and free again.
I'll try to post some pics tomorrow.
- Mark
Mom and Sister visit
Very excited. On my way to pick up Amanda to bring her back down to Egleston to see the baby and Madeline is bringing Avery down as well. Should be fun.
- Mark
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I didn't have much time for updates today but things are still going pretty well.
Amanda is doing great and got all her IV ports and all removed today. She was able to get up and stretch out some and shuffle around the ward. We're hoping she'll get a pass to take a quick trip over to Egleston with me tomorrow. We're gonna work on the Dr's about that in the morning.
Baby (still choosing between 3 names) is holding pretty steady still. She is doing great overall but today was moreso in the 2:1 heartblock rhythm that we were seeing prior to the sustained tachycardia episode that landed Amanda at Northside for the haul. Still no signs of tach but we'd all love to see her back in a normal rhythm. They decided to take the lidocaine drip back up to yesterdays level and see how she responds. The good news is that her blood pressure is totally fine so despite the abnormal rhythm she is getting plenty of blood flowing from the heart.
I was able to feed her for her first feeding this morning which went well. She has had a few more feedings since then. If she continues to eat and hold it down with no issues then they will look at removing the belly button IV and start administiring mexillitine (drug Amanda took while in hospital) orally rather than the lidocaine IV. This would be especially great because that will allow us to hold her! We are unable to do so now in order to avoid dislodging that IV in the belly button. I also got to see her open her eyes today and changed a diaper as well. Overall, she is doing very well.
Attaching a couple of pics from day 2.
- Mark
Tuesday, June 15, 2010
Day 2
There are no new updates yet today. We both got some much needed sleep last night. Things remain stable for both BGK and Amanda. It was really hard to leave Egleston last night to go get some sleep but she is in great hands there. They have at least one dedicated nurse for each patient, watching only that patient, and sometimes two. She was sleeping calmly when I left last night to come over here to Northside and check on my other patient. Amanda is recovering from the C-section well. They are going to be helping her to get out of bed for the first time today since the procedure. We are hoping she'll be able to get over to Egleston on Wednesday for a quick visit. Some people have indicated they would like to visit Amanda at Northside and she would love to see you all but she is still in recovery mode and waiting until this evening to come see her would help her a lot.
We are still trying to solidify her real name so she won't be called BG forever. We're very close!
Attaching a quick pic that I took of her up close at Egleston. Thank you to everyone for all of the well wishes and positive thoughts and prayers. We definitely appreciate the support more than you know.
- Mark
Monday, June 14, 2010
Egleston
What a day. Both Amanda and I are exhausted at this point from not sleeping much last night and all of the emotional waves we are riding. We feel relieved with where things stand right now.
Baby Koch is settled in very nicely over at Egleston. She has a nice little setup in her pod in the CICU and has been very stable and content. They have continued giving her only the lidocaine through an IV drip thus far and actually reduced the dosage some from the initial starting dosage. She is doing very well and her heart is beating pretty well with the meds. I have heard multiple doctors say today that all has gone smoother and better than expected. From the delivery to the echo of her heart at Egleston, they have been pleased so far. They confirmed again that her heart is structurally great with no issues and the problem is with the electrical system of the heart. That is a big plus that there are no physical structural defects there also to add complexity. We are on a wait and see approach with her currently before doctors make any big decisions on any next steps.
We haven't decided on the name yet but it will be coming very shortly. We've narrowed it to a few.
Attaching a couple pics of her in her bed.
- Mark
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6/14 Birthday
BGK is doing well, is stable and currently being transported over to Egleston. As I mentioned in the previous post, we were relieved and pleasantly surprised that she came out crying. The Pediatric Cardiologist was there for the birth along with the OB, Neonatal Doctor, and many others. Everything was surprisingly calm in the operating room. We were able to get a few pictures and Amanda got to give her a kiss before they wheeled her up to the NICU to take all the measurements, insert the IV, and get her stabilized.
Amanda is now out of the operating recovery room and returned to the room that she has been in for 36 days now. Rather than the post-partum ward she returned to the High Risk pregnancy ward same room that she has been in and knows all the nurses and has all of her stuff moved into. She is very tired now but doing great.
The transport crew just brought BGK by the room so that Amanda could see her and touch her before heading over to the Egleston Childrens healthcare Cardiac Intensive Care Unit. The pediatric cardiologist came along with BGK to the room to talk to us about what he saw while in NICU with her. Said she was doing extremely well initially but then saw some runs of tachycardia and some short runs of 2:1 heart block, the same things that we saw while in Amanda. They went ahead and administered an antiarrhythmic Lidocaine through the IV. Lidocaine is the IV form of one of the medications that Amanda has been taking orally the past month. This seemed to help and over the last hour he only saw a couple blips of tachycardia for a few seconds. He indicated that this first 72 hours will be very telling as the heart rhythm changes quite a bit during this time and then settles in to what it will be longterm. Overall he said she is doing great and is very feisty and active and all signs are great.
I am heading over to Egleston now. Will post more later.
Attaching a picture of Amanda giving her a kiss as they were taking BGK out of the C-section operating room.
- Mark
Doing great
BGK born at 9:22. Came out crying and looked great. She is 19 inches and 5lb 12oz. We had an enormous group of dr's and nurses in the OR. We are in the NICU now stabilizing and getting tests done. More later but Amanda did awesome and all is good thus far...
- Mark
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Sunday, June 13, 2010
It's Go Time
At this morning's echo the perinatologist saw more runs of vt and they would continue for a few seconds or longer. This was more than we had seen anytime recently and concerning enough for the dr to call the on-call cardiologist to come take a look. This along with the measurements estimating BGK's size to be 6lb 1oz convinced the doctors that rather than waiting another week we should go ahead and have her. The risk of anything happening to her inside Amanda now appeared to outweigh the benefit that one more week may gain us. The doctors started putting everything in motion to schedule the Monday 6/14 birth. We were excited to find out that both the OB and Pediatric cardiologist scheduled for Monday were the two that we most want to handle the procedure. We are scheduled for a 9:00 am delivery and BGK will immediately be taken to the NICU here at Northside and once stabilized will be transported over to the Egleston CICU. I will go with BGK while Amanda stays at Northside recovering from the C-section. I have found that many people assume Egleston is the Childrens Healthcare unit here next to Northside but that location is actually Scottish Rite and Egleston is over at Emory.
We are definitely very excited yet also nervous. We are looking forward to moving on to the next step and getting a precise diagnosis on her condition and I am selfishly very excited to get Amanda back to our family.
I'll try to update this blog on BGK's birthday with details.
- Mark
We are definitely very excited yet also nervous. We are looking forward to moving on to the next step and getting a precise diagnosis on her condition and I am selfishly very excited to get Amanda back to our family.
I'll try to update this blog on BGK's birthday with details.
- Mark
35 weeks and 1 day
We found out this morning that tomorrow, Monday 6/14, is going to be the birthday of BGK. We do not yet know the exact timing but should know more exact details later today. I'll post more details later today when we know the specifics.
- Mark
- Mark
Friday, June 11, 2010
Almost 35 weeks...
Amazingly, Amanda will have made it to 35 weeks on Saturday. That's hard to believe when I think back to the circumstances surrounding the trip to the hospital four and a half weeks ago. Amanda hit the one month anniversary in the hospital this past Tuesday and is getting extremely stir-crazy in her cell. I continue trying to remind both her and the kids that her hospital stay is almost complete and they will get their Mom back although our trips will then be made to a different hospital. As I have mentioned in previous posts, we are so ready to move on to the next challenge but we also would love to isolate the challenges to be solely the heart and not complicate things with any others such as the lungs not being ready.
Everything has continued to hold steady the past few days. BGK's heartrate has been solid and beating primarly in normal rhythm and she continues to grow and progress greatly. We are always relieved to see that the the heart arrythmia has not caused any other negative effects that they can see. Although the doctors wont measure the baby's size any more often than every couple weeks, Amanda talked a tech into taking the measurements and BGK measured 5lb 7 oz. We continue trying to ask the doctors about the timeframes and some will not committ to any dates at all but others have told us that 36 weeks is definitely written in our files and discussed in the meetings. We're definitely hoping that holds true and this upcoming week will be Amanda's final one in that hospital room. We are going to try and push them for more details around those specifics this week.
Thank you all for the support.
- Mark
Everything has continued to hold steady the past few days. BGK's heartrate has been solid and beating primarly in normal rhythm and she continues to grow and progress greatly. We are always relieved to see that the the heart arrythmia has not caused any other negative effects that they can see. Although the doctors wont measure the baby's size any more often than every couple weeks, Amanda talked a tech into taking the measurements and BGK measured 5lb 7 oz. We continue trying to ask the doctors about the timeframes and some will not committ to any dates at all but others have told us that 36 weeks is definitely written in our files and discussed in the meetings. We're definitely hoping that holds true and this upcoming week will be Amanda's final one in that hospital room. We are going to try and push them for more details around those specifics this week.
Thank you all for the support.
- Mark
Tuesday, June 8, 2010
34 wks and 3 days
I'm sorry about the lack of updates the past few days. Our status has not really changed since my last post. On Wednesday and Thursday we saw a few blips of tachycardia for just a few seconds but not for very long at all. It wasn't enough to concern the doctors very much. The fluid levels continue to hold steady at around 8-9 cm and BGK is progressing well in size and all of the measurements.
In talking to the perinatologists they want us to make it to 36 weeks and go ahead and schedule to have her then. Saturday was the 34 week mark, so that means we finally have a finish line in sight to Amanda's hospital stay and can move on to our next challenges.
Just when we grasped the fact that there was only 2 more weeks, we went in for the Monday echo and got a little scare. The perinatologist saw more than a few seconds of tachycardia and got concerned enough to call a pediatric cardiologist to take a look. After some discussion they decided to stay the course and not take any action just yet.
Today Amanda got to leave the hospital for the first time in 28 days. We both went over to Egleston to meet with an electro-physiologist and see the CICU there. The hospital and facilities there were really nice and the doctor was extremely informative and helpful. We sat in his office and he answered question after question for an hour and a half. I thought the visit was very insightful and somewhat comforting.
Thank you all for the support.
- Mark
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In talking to the perinatologists they want us to make it to 36 weeks and go ahead and schedule to have her then. Saturday was the 34 week mark, so that means we finally have a finish line in sight to Amanda's hospital stay and can move on to our next challenges.
Just when we grasped the fact that there was only 2 more weeks, we went in for the Monday echo and got a little scare. The perinatologist saw more than a few seconds of tachycardia and got concerned enough to call a pediatric cardiologist to take a look. After some discussion they decided to stay the course and not take any action just yet.
Today Amanda got to leave the hospital for the first time in 28 days. We both went over to Egleston to meet with an electro-physiologist and see the CICU there. The hospital and facilities there were really nice and the doctor was extremely informative and helpful. We sat in his office and he answered question after question for an hour and a half. I thought the visit was very insightful and somewhat comforting.
Thank you all for the support.
- Mark
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Friday, June 4, 2010
Friday Night by the Fountain
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1 day away from 34 weeks
One of the initial goals that the nurse put up on the whiteboard on Amanda's room was to make it to 34 weeks. On Saturday we will hit that milestone and keep on going past it. If you would have asked us on Tuesday or Wednesday of this week when we thought we would have BGK we would have guessed it would be by this weekend. Now it appears that we'll make it at least into next week. It is such a conflicting feeling for us as we are so ready to be done with staying here away from Avery and Ryan and so ready to move onto the next steps but we also realize the next steps will be made easier by staying in here longer. The more time she stays inside then the better she'll be able to handle whatever is in store.
Amanda's amniotic fluid levels have held up around the 8-9cm level the past couple of days. The doctors chose to cut back on one of the medications in case that was negatively affecting the fluid levels. The past couple days during our echocardiograms we have seen a couple blips of ventricular tachycardia that we had not seen in a couple of weeks. Although very short, it was alarming in that we had not seen since our first week here. As a result they have bumped the beta blockers dosage back up to what it was previously. We did not see any VT in today's echo and the fluid was at almost 9 so we're stuck here a little longer.
Some good news came from Amanda's cardiologist today. The monitoring of Amanda's heart has shown great results and has not had any bad effects from the medicines so he has cut out the nonstop monitoring wires she has had on since we arrived. This was a HUGE relief for her to get that off.
Tonight will be dinner and a movie here at the hospital for us with the kids. They are missing Mommy a ton and are very much looking forward to spending a good chunk of time with her today.
- Mark
Amanda's amniotic fluid levels have held up around the 8-9cm level the past couple of days. The doctors chose to cut back on one of the medications in case that was negatively affecting the fluid levels. The past couple days during our echocardiograms we have seen a couple blips of ventricular tachycardia that we had not seen in a couple of weeks. Although very short, it was alarming in that we had not seen since our first week here. As a result they have bumped the beta blockers dosage back up to what it was previously. We did not see any VT in today's echo and the fluid was at almost 9 so we're stuck here a little longer.
Some good news came from Amanda's cardiologist today. The monitoring of Amanda's heart has shown great results and has not had any bad effects from the medicines so he has cut out the nonstop monitoring wires she has had on since we arrived. This was a HUGE relief for her to get that off.
Tonight will be dinner and a movie here at the hospital for us with the kids. They are missing Mommy a ton and are very much looking forward to spending a good chunk of time with her today.
- Mark
Wednesday, June 2, 2010
33 Weeks 4 days
We were very anxious for the daily echo this morning. After yesterday's appointment we were particularly interested in two particular areas, the amniotic fluid level and also the plan that the pediatric cardiologists have mapped out for the birth.
We went in today kind of expecting to see that the fluid level had dropped lower once again but this time it held about the same, somewhere between 6 and 8 cm. That was a little bit of a relief and we are hoping it continues to stay up at least in that range. The longer we can hold out the better at this point and both us and the cardiologist were thinking that this could be the week with the way the fluid level was trending. We'll anxiously wait and see again tomorrow.
As far as the birth plan the pediatric cardiologists are mapping out, that was not a particularly enjoyable discussion. The reality of it all quickly returns when talking about these specifics. The doctors have decided that BGK should be taken over to Egleston shortly after birth to be there for care rather than staying here at Northside. That would prevent the transport having to take place during a crisis mode if one did occur. The plan will be for BGK to be in the NICU (neonatal intensive care unit) here at Northside after birth hopefully until Amanda is back up from her C-section. They could start the process of monitoring and stabilizing here and then after Amanda is awoken and she is able to see her, BGK will definitely be transported over to Egleston sometime shortly after. The big question will be whether she goes to the NICU or the CICU (Cardiac ICU) at Egleston and that wont be known until she is out and we see what the whole picture is with her heart, lungs, and everything else. It sounds like the logistics are going to be crazy with Amanda stuck at Northside recovering while BGK will be over at Egleston and I'll be all over the place trying to be with both and Avery and Ryan too.
We always ask the doctors a ton of questions everyday but so many are purely hypothetical and are unanswerable until we see how things turn out. There are just so many constant details to learn and soak up about the current pregnancy and also future possibilities.
- Mark
We went in today kind of expecting to see that the fluid level had dropped lower once again but this time it held about the same, somewhere between 6 and 8 cm. That was a little bit of a relief and we are hoping it continues to stay up at least in that range. The longer we can hold out the better at this point and both us and the cardiologist were thinking that this could be the week with the way the fluid level was trending. We'll anxiously wait and see again tomorrow.
As far as the birth plan the pediatric cardiologists are mapping out, that was not a particularly enjoyable discussion. The reality of it all quickly returns when talking about these specifics. The doctors have decided that BGK should be taken over to Egleston shortly after birth to be there for care rather than staying here at Northside. That would prevent the transport having to take place during a crisis mode if one did occur. The plan will be for BGK to be in the NICU (neonatal intensive care unit) here at Northside after birth hopefully until Amanda is back up from her C-section. They could start the process of monitoring and stabilizing here and then after Amanda is awoken and she is able to see her, BGK will definitely be transported over to Egleston sometime shortly after. The big question will be whether she goes to the NICU or the CICU (Cardiac ICU) at Egleston and that wont be known until she is out and we see what the whole picture is with her heart, lungs, and everything else. It sounds like the logistics are going to be crazy with Amanda stuck at Northside recovering while BGK will be over at Egleston and I'll be all over the place trying to be with both and Avery and Ryan too.
We always ask the doctors a ton of questions everyday but so many are purely hypothetical and are unanswerable until we see how things turn out. There are just so many constant details to learn and soak up about the current pregnancy and also future possibilities.
- Mark
Tuesday, June 1, 2010
Memorial Day Weekend
It was an uneventful Memorial Day weekend in the hospital. Amanda is still getting over the sting of not getting to go home on Friday and slowly embracing the fact that this is her home until BGK arrives. The good news that came out of Friday's session was that they gave Amanda 'walking priveleges' so she no longer has to be pushed in a wheelchair to the outside fountain or to McDonald's to get the kids a milkshake (those are really the ONLY two places to go). The 33 week mark passed on Saturday so the time is moving along quickly.
The weekend echos are not quite as scheduled. It generally occurs whenever the on-call perinatologist or cardiologist arrives and calls the patients down rather than the weekdays when we generally go down at 7:30 or 8:30 everyday. We did learn today that the reason we didn't get to go home this weekend was not because anything had regressed in BGK, but that the doctor just wasn't comfortable sending us home until everything was perfect. If he isn't comfortable about us being discharged for home then we shouldn't be either.
Results continue to be about the same for BGK's heart rate. She is still holding primarily in a sinus 1:1 rhythm. Within the past few days the doctors have started to more closely monitor the amniotic fluid level around the baby because its on the border of being low. The doctor's are thinking it is most likely due to the medications. They have said that they consider anything above 8cm to be normal and for the past few days Amanda has been teetering right around the bottom of that normal level at 8 or 9 cm. Amanda has been drinking quite a bit more water to try and help the cause but at today's echo the level had dipped down to 6cm, so below that normal range and officially in the 'Low' range. They decided to back off of the beta blockers slightly to see if this helps with the fluid level go back up and we'll be watching closely the next day or two. From talking to multiple doctors it sounds like the fluid dropping below the 5cm mark will = time to make a move. Things were moving along pretty smoothly so we hope this doesn't throw a new wrinkle into plans.
The pediatric cardiologist visited Amanda's room today and it sounds like they are making the gameday plans for who/what/where will happen when its time to have BGK. Whereas things were moving along slowly and relatively smoothly, it appears that this fluid level drop has somewhat alerted them to make sure everything will be in place and ready.
Once again, thank you to everyone for the support. We truly appreciate it.
- Mark
The weekend echos are not quite as scheduled. It generally occurs whenever the on-call perinatologist or cardiologist arrives and calls the patients down rather than the weekdays when we generally go down at 7:30 or 8:30 everyday. We did learn today that the reason we didn't get to go home this weekend was not because anything had regressed in BGK, but that the doctor just wasn't comfortable sending us home until everything was perfect. If he isn't comfortable about us being discharged for home then we shouldn't be either.
Results continue to be about the same for BGK's heart rate. She is still holding primarily in a sinus 1:1 rhythm. Within the past few days the doctors have started to more closely monitor the amniotic fluid level around the baby because its on the border of being low. The doctor's are thinking it is most likely due to the medications. They have said that they consider anything above 8cm to be normal and for the past few days Amanda has been teetering right around the bottom of that normal level at 8 or 9 cm. Amanda has been drinking quite a bit more water to try and help the cause but at today's echo the level had dipped down to 6cm, so below that normal range and officially in the 'Low' range. They decided to back off of the beta blockers slightly to see if this helps with the fluid level go back up and we'll be watching closely the next day or two. From talking to multiple doctors it sounds like the fluid dropping below the 5cm mark will = time to make a move. Things were moving along pretty smoothly so we hope this doesn't throw a new wrinkle into plans.
The pediatric cardiologist visited Amanda's room today and it sounds like they are making the gameday plans for who/what/where will happen when its time to have BGK. Whereas things were moving along slowly and relatively smoothly, it appears that this fluid level drop has somewhat alerted them to make sure everything will be in place and ready.
Once again, thank you to everyone for the support. We truly appreciate it.
- Mark
Friday, May 28, 2010
Stuck
We went into the Friday morning echo with quite a bit of anticipation. On Wednesday the pediatric cardiologist was telling us that they would see how everything looks on Friday and possibly send Amanda back home that day. It has been a full week now of seeing the much improved results consistently. Although we kept telling ourselves not to get too excited until we officially got the word, it was impossible not to be excited about the possibility of being back home.
The perinatologist took a close look at things and said that he would like her to stay in there. Said that although things were very good they werent perfect and he wasnt comfortable sending her away from the daily monitoring and constant care yet. We were definitely crushed after getting our hopes up that it was almost a done deal. Everything that we saw looked exactly the same as the previous week. We believe it was just a difference in opinions between the doctors. The pediatric cardiologist was the one that really put it in our heads on Wednesday but the perinatologist was the one that wasnt quite ready to let us go.
We've just had to remind ourselves that if there is any doubt at all about our ability to maintain things at home then we should settle down and be glad to be there in great care. Easier said than done though. Amanda is at 33 weeks today and he threw out the 36 week number on Friday so we'll see what happens.
-Mark
The perinatologist took a close look at things and said that he would like her to stay in there. Said that although things were very good they werent perfect and he wasnt comfortable sending her away from the daily monitoring and constant care yet. We were definitely crushed after getting our hopes up that it was almost a done deal. Everything that we saw looked exactly the same as the previous week. We believe it was just a difference in opinions between the doctors. The pediatric cardiologist was the one that really put it in our heads on Wednesday but the perinatologist was the one that wasnt quite ready to let us go.
We've just had to remind ourselves that if there is any doubt at all about our ability to maintain things at home then we should settle down and be glad to be there in great care. Easier said than done though. Amanda is at 33 weeks today and he threw out the 36 week number on Friday so we'll see what happens.
-Mark
Wednesday, May 26, 2010
Family testing
-Mark
Memorial Day at home??
Since my last post things have almost been boring here but that is a good thing. Our results have continued the same great trend since last Friday with each day's echo continuing to show consistent progress. BGK's heart rate continues to beat at primarily a normal 1:1 sinus rhythym with no sign of any negative impacts at all. She is continuing to progress normally so we're loving seeing the medicines help and being more boring these days.
With all of the continued good news, the doctors have been mentioning to Amanda the possibility of getting to go home maybe by this weekend. They want to watch results through Friday and if all continues that will have been a full week of consistently stable heart rate. Although this sounds GREAT it is also slightly scary after having been under a microscope for a few weeks. We'll see what happens but it would be great for all of us to have Amanda back at home. Being at home would still require Amanda to take the meds on regular intervals, lay around quite a bit, and go see the perinatologist and cardiologist everyday or two. Laying low could prove to be quite a challenge for her but I'll be watching her closely and making sure to remind her often to relax.
I'll keep you updated.
-Mark
With all of the continued good news, the doctors have been mentioning to Amanda the possibility of getting to go home maybe by this weekend. They want to watch results through Friday and if all continues that will have been a full week of consistently stable heart rate. Although this sounds GREAT it is also slightly scary after having been under a microscope for a few weeks. We'll see what happens but it would be great for all of us to have Amanda back at home. Being at home would still require Amanda to take the meds on regular intervals, lay around quite a bit, and go see the perinatologist and cardiologist everyday or two. Laying low could prove to be quite a challenge for her but I'll be watching her closely and making sure to remind her often to relax.
I'll keep you updated.
-Mark
Sunday, May 23, 2010
Wow!!
In my last post on Friday I mentioned that we were so excited to see the progress being made with Baby Girl Koch's (BGK's) heart rate. We have been afraid to get too excited until we saw more than one day's progress in fear that the next day could hold a setback. We have had two more echo's since then, on Saturday and Sunday, and they have both been even better. BGK's heart rate has been almost full sinus rhythm (aka "normal") both days! There have been no instances of tachycardia and only occasional times of 2:1 but mostly 1:1 rhythm. That makes 3 straight days of huge improvement, and enough for me to be extremely excited and encouraged!
Amanda is doing great and handling being here at the hospital in stride. She had me bring in the laptop and printer so she could handle some work and has been attending some of the hospitals educational sessions such as Moms 2 Moms and a class on C-sections. Amazingly, for as much as Amanda doesn't like Carly's dog hair at home, she has really enjoyed the Happy Tails dog visits both weeks. There was a lab that came in from the same breeder that Carly is from and jumped right up on the bed as you can see in the pic above.
Thank you all for the love and support. It is greatly appreciated.
-Mark
Friday, May 21, 2010
Progress!!!
So its been a few days since I last sent out an update on our status here at the hospital. Since Monday it has been pretty much status quo for a few days. Amanda has been taken the beta blockers while also taking both oral and iv magnesium doses to keep her magnesium level up above 2.0. I am so glad we have each other to discuss everything going on becuase we have to constantly remind each other of priorities. I find myself getting so wrapped up in 'project' of research and possible corrective actions that I sometimes lose sight of the fact that it is my little baby girl's life that we are working so hard for.
Going to our daily fetal echo appointment each morning we are full of anticipation to see how she (baby) is responding to the medicine. We are always a little fearful that things could have gotten worse overnight and always extremely hopeful that things could have improved. The first few days of the week the echo continued to show pretty much the same thing. Baby's heart was much improved from early last week but still continues to jump up into the high rate for a few beats every so often. I try to remind myself to be happy that there have been no other adverse reactions to the irregular heart beat occurring, but always a little bummed that we arent seeing the remaining blips of tachycardia go away.
On Wednesday the doctors all decided that we should try and new medication in addition to the beta blockers and magnesium. It is called mexiletine and is an anti-arrhythmic that works by targeting the sodium channels. We were a little concerned initially because many of the doctors did not have experience with this medication, especially for the purposes of a fetus. After talking to them and understanding the risks/benefits we decided to go with their recommendation. They informed us it would take a few days to full kick in and see the expected results.
At todays echo ultrasound the pediatric cardiologist and perinatologist did not see one instance of the tachycardic heart rate. They saw mostly sinus rhythm (normal) with some AV block 2:1 rhythm mixed in but no tachycardia. The heart size all looks good and there is no sign of any fluid buildup indicating any sort of failure. It was by far the best day yet and we were extremely excited to see some progress. At the same time, we are hesitant to get too excited about it but it certainly felt good to see positive improvements. We will be extemely anxious to see if these results can continue.
On another note, we celebrated our 9th wedding anniversary here at the hospital on Wednesday. Avery and I picked up some sushi and brought it to Amanda's room and the hospital got us an anniversary cake too. Thank you to all that sent the very nice cards, emails, and messages.
-Mark
Going to our daily fetal echo appointment each morning we are full of anticipation to see how she (baby) is responding to the medicine. We are always a little fearful that things could have gotten worse overnight and always extremely hopeful that things could have improved. The first few days of the week the echo continued to show pretty much the same thing. Baby's heart was much improved from early last week but still continues to jump up into the high rate for a few beats every so often. I try to remind myself to be happy that there have been no other adverse reactions to the irregular heart beat occurring, but always a little bummed that we arent seeing the remaining blips of tachycardia go away.
On Wednesday the doctors all decided that we should try and new medication in addition to the beta blockers and magnesium. It is called mexiletine and is an anti-arrhythmic that works by targeting the sodium channels. We were a little concerned initially because many of the doctors did not have experience with this medication, especially for the purposes of a fetus. After talking to them and understanding the risks/benefits we decided to go with their recommendation. They informed us it would take a few days to full kick in and see the expected results.
At todays echo ultrasound the pediatric cardiologist and perinatologist did not see one instance of the tachycardic heart rate. They saw mostly sinus rhythm (normal) with some AV block 2:1 rhythm mixed in but no tachycardia. The heart size all looks good and there is no sign of any fluid buildup indicating any sort of failure. It was by far the best day yet and we were extremely excited to see some progress. At the same time, we are hesitant to get too excited about it but it certainly felt good to see positive improvements. We will be extemely anxious to see if these results can continue.
On another note, we celebrated our 9th wedding anniversary here at the hospital on Wednesday. Avery and I picked up some sushi and brought it to Amanda's room and the hospital got us an anniversary cake too. Thank you to all that sent the very nice cards, emails, and messages.
-Mark
Monday, May 17, 2010
Straight to the Hospital...
So when we got to the hospital they were ready for us and one of the nurses in the ‘High Risk Perinatal Ward’ greeted us with “Lets Rock and Roll!” as she got us shuffled into our room. The first thing Amanda noticed on her whiteboard was the list of activities to remind patients of things they can do to pass the long periods of time here. These were activities such as Happy Tails Dog visits on Fridays, Movies, Computer usage, Moms 2 Mom, etc. Amanda’s first response was “uh oh, this is a long term room” fearing that this could be a longer visit than a day or two.
They started treating us with beta blockers to try and reduce the baby’s heart rate as well as a two part steroid shot used to strengthen the baby’s lungs in case we were to have to deliver the baby sometime early. They have been giving the beta blockers in a smaller dosage more often in order to monitor the effects on Amanda’s heart as well and provide the ability to back off it if there are any negative effects on her heart rate. She has been given these beta blockers every four hours since then. They have also been giving her intravenous and oral dosages of magnesium to raise her levels.
While here we have been very with the daily ultrasounds and meetings with the perinatologists, pediatric cardiologists, ob-gyns, and pediatric cardiologists. It is a very strange feeling when each doctor that we speak with tells us that they are very familiar with our case and that there has been quite a few big conversations discussing it among the groups.
We will have been here a full week tomorrow. The positive news is that we have not seen the baby’s heart rate in that sustained tachycardia rate since last Tuesday. The heart rate is beating primarily in that 2:1 mode once again but does still continue to jump up into the 200+ range for a few beats every so often and then returns back down.
For the time being they want Amanda to stay here in the hospital to closely monitor the status. We will continue the path of trying to keep the baby’s heart rate as stable as possible in order to make certain it stays in Amanda as long as possible.
They started treating us with beta blockers to try and reduce the baby’s heart rate as well as a two part steroid shot used to strengthen the baby’s lungs in case we were to have to deliver the baby sometime early. They have been giving the beta blockers in a smaller dosage more often in order to monitor the effects on Amanda’s heart as well and provide the ability to back off it if there are any negative effects on her heart rate. She has been given these beta blockers every four hours since then. They have also been giving her intravenous and oral dosages of magnesium to raise her levels.
While here we have been very with the daily ultrasounds and meetings with the perinatologists, pediatric cardiologists, ob-gyns, and pediatric cardiologists. It is a very strange feeling when each doctor that we speak with tells us that they are very familiar with our case and that there has been quite a few big conversations discussing it among the groups.
We will have been here a full week tomorrow. The positive news is that we have not seen the baby’s heart rate in that sustained tachycardia rate since last Tuesday. The heart rate is beating primarily in that 2:1 mode once again but does still continue to jump up into the 200+ range for a few beats every so often and then returns back down.
For the time being they want Amanda to stay here in the hospital to closely monitor the status. We will continue the path of trying to keep the baby’s heart rate as stable as possible in order to make certain it stays in Amanda as long as possible.
Sunday, May 16, 2010
Background....
So, I have decided to create this blog to provide updates on the status of Amanda and our little girl baby #3. We have been emailing out updates to individuals and groups and this should help us to provide the updates. Please still feel free to contact us.
For anyone that isn't aware of the details around our current standing I will attempt to summarize. Around five weeks ago Amanda went in for a routine perinatal doctor checkup. At that time the Doctor recognized an irregular heartbeat that he thought deserved some further inspection by the cardiologist. He sent Amanda to give blood and then directly over to the pediatric cardiologist to look into it further. They found that our baby's heart had what they call 2:1 AV heartblock. This is a condition where the heart's upper chambers (atria) are beating two times to each one beat of the lower chambers (ventricles). The atria rate was holding steady at around the normal 130 range and the ventricle range was operating at about a rate of 70. In the majority of cases where the doctors see this it is due to an auto-immune disorder in the mother causing the deterioration in the baby's heartrate. Amanda has tested negative for these auto-immune disorders both times so that is now ruled out. We were to continue with weekly perinatal doctor appointments and pediatric cardiologist appointments every few weeks to monitor the baby's heart.
Amanda and I would look so forward to our weekly appointments to see what was going on because we have been so worried. During the week between appointments, outside of the baby moving around so much, we were left to only wonder what was going on. The heart was holding steady in that 2:1 AV block every week until this past Tuesday May 11th. When we went to our weekly perinatologist visit the baby's heart rate was beating very fast, between 230-280, and holding up in that range constantly. It was a very scary sight to see on the ultrasound. The ultrasound machines are unreal as you can clearly see each chamber of the heart working. On this day the heart just looked like it was going crazy. The good news is that we have found out a baby in utero can actually withstand a heart in tachycardia (very fast rhythm over 200 bpm) for weeks. He had us go to the hospital right away so we could continue to be monitored and medicine administered to try to stabilize the baby's heartrate.
At that point we had no idea if we would only be there a couple of days, weeks, or even if we would have to do an emergency c-section that day. I will follow up with the week's progression in my next post.
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