Madison has been working really hard to suck her thumb for a while now. She's actually got it in her mouth once or twice and sucked away! It's so cute and part of Matt and I want her to find it because it is so cute when little tiny babies suck their thumb, BUT we know it's not as cute when they get older, AND . . . as everyone says, "You can take away a pacifier, but you can't take away a thumb."
25.7.09
24.7.09
Madison Cooing
Over the last two to three weeks, Madison started cooing. I was so excited when I first heard her do it, because I just couldn't wait for her to start! Since that first little coo, weeks ago, she has started to talk more and more! She really started talking more just before she went into the hospital and when she was in the hospital. She also started smiling a ton more at this time! Since we came home from the hospital, I have been trying to get a good sample on video, but every time I brought out the camera, she would stop, but today, I finally got a good video while my niece Megan was talking to her in her crib. I'm still working on getting some good smiles on video!
22.7.09
Visitors & Ding Dong the TV's Gone!
On Sunday, July 19th, Madison was officially 12 weeks old. We started the day by going to church. This first picture is right before church. Matt sat Madison on the couch so he could pack her diaper bag. I couldn't resist taking a picture with her cute little belly hanging out!
A while after church, Uncle Matt and Aunt Melissa happened to be in Michigan so they stopped by to visit for a bit. Grandma and Grandpa Bertram came over too.
Later in the afternoon Uncle Chad, Aunt Jenny, and cousins Austen and Kennen came to pick up our old TV!! Matt was very sad to see his 65 inch big screen leave, but I was ecstatic to have it out of our living room!!! I even had to take pictures! Don't feel to bad for Matt, we did get a replacement, although it's ONLY 42 inches!
While Jenny, Chad and the boys were visiting Aunt Jenny painted Madison's toenails and Kennen changed her diaper.
A while after church, Uncle Matt and Aunt Melissa happened to be in Michigan so they stopped by to visit for a bit. Grandma and Grandpa Bertram came over too.
Later in the afternoon Uncle Chad, Aunt Jenny, and cousins Austen and Kennen came to pick up our old TV!! Matt was very sad to see his 65 inch big screen leave, but I was ecstatic to have it out of our living room!!! I even had to take pictures! Don't feel to bad for Matt, we did get a replacement, although it's ONLY 42 inches!
While Jenny, Chad and the boys were visiting Aunt Jenny painted Madison's toenails and Kennen changed her diaper.
Three Month Pictures
Here are a few of Madison's three month pictures. She did so great for the photo shoot! If you want to see them all, you can click here to go to my web site. The password is Huber. Thanks to Kelly who helped with the photo shoot!
13.7.09
Heart Update
Today we had our first appointment with the cardiologist since we've been home from the hospital and things are looking good. They did an EKG and a short Echo. Both tests looked good. The EKG showed that she was in sinus or normal rhythm, and her heart function looks like it's almost back to normal according to the echo. The cardiologist put her on a halter monitor for 24 hours to see how often she is in sinus.
Madison seems to be feeling well and is back to her old self, sleeping, eating, smiling and playing! She is getting so big already!
Madison seems to be feeling well and is back to her old self, sleeping, eating, smiling and playing! She is getting so big already!
11.7.09
We're Home
We got home yesterday afternoon around 3:00. Since then it has been pretty uneventful - thank goodness! Matt's Mom, Step-Dad, and Grandma came to visit last night. Unfortunately, Madison was either sleeping, or cranky the majority of the time they were here! We think she had some gas.
At about 5:00 this morning, after I finished feeding Madison, I got a little worried about her heart rate. I woke Matt up and we checked it with our new stethoscope, and it was fine! Whew! I was so worried we were going to end up going back to Mott. Thank goodness for stethoscopes!
This morning it has been so wonderful to sit on the couch as a family in our pajamas! We are so happy to be home!
At about 5:00 this morning, after I finished feeding Madison, I got a little worried about her heart rate. I woke Matt up and we checked it with our new stethoscope, and it was fine! Whew! I was so worried we were going to end up going back to Mott. Thank goodness for stethoscopes!
This morning it has been so wonderful to sit on the couch as a family in our pajamas! We are so happy to be home!
10.7.09
We're Going Home!!!!!
We got the official word this morning around 10:30, we are going home! We are so excited, it has been a long road. We have been in the hospital for 9 days. Although, that is minimal to some families who have been here for months, or even a year or more. We will continue to pray for them and for all the children here at Mott. It just doesn't seem fair that children should have to endure such things.
The medicine seems to be working well at keeping her heart rate low. She still has some arrhythmia, but that is okay. We will continue to follow up with our cardiologist and come here sometimes to see the EP. They also suggested buying a stethoscope to check her heart rate occasionally.
Thanks so much for all your support and prayers during this challenging time. We truly believe that the prayers helped in so many ways. God Bless.
The medicine seems to be working well at keeping her heart rate low. She still has some arrhythmia, but that is okay. We will continue to follow up with our cardiologist and come here sometimes to see the EP. They also suggested buying a stethoscope to check her heart rate occasionally.
Thanks so much for all your support and prayers during this challenging time. We truly believe that the prayers helped in so many ways. God Bless.
9.7.09
Thursday, July 9th
Yesterday afternoon we were moved to general care. We were sad to leave all the great nurses at PCTU. They were so great. The great news was little Thomas Kramer is just two doors down!
Well the news is getting better. Madison seems to be responding to the medicine well. Her heart continutes to stay at a good rate the majority of the time. (The highest she really gets is about 160.) She is also in "sinus" or regular rythym the majority of the time. If this continues to happen, she will only need one medication to control her condition. This also means that she is probably coming home tomorrow or Saturday, and it sounds more like tomorrow.
She will have to continue to follow up with a cardiologist on a regular basis to make sure her heart is continuing to well. There is a chance that she will "outgrow" this condition. If she doesn't she may have to have the ablation again in a couple of years. We are going to really pray that she doesn't have to.
Again, thanks for all your kind words and prayers. Please continue to pray for Madison and all the children here at Motts. Especially little Thomas Kramer and for Madison's roomates Taya and Caleb.
Our Madison is such a little trooper.
Well the news is getting better. Madison seems to be responding to the medicine well. Her heart continutes to stay at a good rate the majority of the time. (The highest she really gets is about 160.) She is also in "sinus" or regular rythym the majority of the time. If this continues to happen, she will only need one medication to control her condition. This also means that she is probably coming home tomorrow or Saturday, and it sounds more like tomorrow.
She will have to continue to follow up with a cardiologist on a regular basis to make sure her heart is continuing to well. There is a chance that she will "outgrow" this condition. If she doesn't she may have to have the ablation again in a couple of years. We are going to really pray that she doesn't have to.
Again, thanks for all your kind words and prayers. Please continue to pray for Madison and all the children here at Motts. Especially little Thomas Kramer and for Madison's roomates Taya and Caleb.
Our Madison is such a little trooper.
8.7.09
Disappointing News
After the procedure, we were led to believe that the procedure took care of her condition and the arrhythmia and tachycardia was taken care of, well it looks like that is not the case. It looks like she is still having bouts of arrhythmia, and her heart rate still seems a little high at times. It looks like the procedure was not as successful as they expected or as they had thought. Although, her condition has improved, she has lest arrhythmia and her hear rate is lower than before.
What does this mean? Well the plan is to start her on oral medication, and wait and see. There is a chance she could "outgrow" this or it could fix itself. If it doesn't, she may have to have another ablation in a few years.
It sounds like we are going to be here a few more days to start the oral medication and see how she does, and then send us home. They also want to move us to "the floor" or general care, but a room is not available right now, so we are staying in intensive care until one opens up. She had an EKG this morning, and is getting an ECHO later.
That's all for now. Thank you for all the prayers!!!!
What does this mean? Well the plan is to start her on oral medication, and wait and see. There is a chance she could "outgrow" this or it could fix itself. If it doesn't, she may have to have another ablation in a few years.
It sounds like we are going to be here a few more days to start the oral medication and see how she does, and then send us home. They also want to move us to "the floor" or general care, but a room is not available right now, so we are staying in intensive care until one opens up. She had an EKG this morning, and is getting an ECHO later.
That's all for now. Thank you for all the prayers!!!!
7.7.09
Another Update
The doctor just came in to give us another update about the procedure. Madison is still doing very well, and they think they finally got it, but they keep the line in and under anethsia to retest to make sure it is completely gone. They have done this twice already.
The doctor also said, it is not PJRT, like they thought, but instead it is AET, or Artrial Ectopic Tachacardia. For info about this, including a video, click here.
The doctor also said, it is not PJRT, like they thought, but instead it is AET, or Artrial Ectopic Tachacardia. For info about this, including a video, click here.
Update on the Procedure
The nurse just came in and gave us an update! She is doing very well!!! They found the spot and are almost done! Keep praying! We know they are being answered.
Pray, Pray, and Pray Some More!
Today is the day Madison has her ablation. It is scheduled for sometime between noon and two. (Sounds like cable repair man hours huh?) As expected we are very nervous. The procedure is done often, but rarely done in a baby as young as Madison. There will be two electrophysiologists doing the procedure, plus a fellow. If all goes well, they are talking about sending her to "the floor" after her procedure, which is general care.
Another challenge we have this morning is that she ate last at 5:30, and cannot eat again until surgery. This is going to make for a long morning.
We are so grateful for all the prayers already sent our way. Please continue to pray for our little Madison, especially this afternoon.
Another challenge we have this morning is that she ate last at 5:30, and cannot eat again until surgery. This is going to make for a long morning.
We are so grateful for all the prayers already sent our way. Please continue to pray for our little Madison, especially this afternoon.
6.7.09
Monday, July 6th
Yesterday there was discussion about trying a new medication on Madison. They decided not to do this because they didn't think it would work, and they didn't think it would be good for her heart. So the decision is to have the ablation procedure. We haven't got any official word about when the procedure is going to happen, but right now, it looks like tomorrow afternoon.
Today, she has been doing well. She will be having a procedure done today to try to fix her central line. Right now she is able to get medicine in it, but they are unable to draw blood from it, so they are going to try to fix it. They will be putting her under some light sedation to do it. This isn't a very fun procedure, so please say an extra prayer for Madison this afternoon.
That is all for now, Madison continues to be in the PCTU, (pediatric cardio intensive care). I know you are all praying, please continue, especially for tomorrow's procedure.
The picture below is one that dad took on July 4th, our last day at Sparrow, when Madison was getting one of her many EKG's.
Today, she has been doing well. She will be having a procedure done today to try to fix her central line. Right now she is able to get medicine in it, but they are unable to draw blood from it, so they are going to try to fix it. They will be putting her under some light sedation to do it. This isn't a very fun procedure, so please say an extra prayer for Madison this afternoon.
That is all for now, Madison continues to be in the PCTU, (pediatric cardio intensive care). I know you are all praying, please continue, especially for tomorrow's procedure.
The picture below is one that dad took on July 4th, our last day at Sparrow, when Madison was getting one of her many EKG's.
5.7.09
Sunday, July 5th
Last night, we were transferred to Mott Children's Hospital in Ann Arbor. Madison rode in the ambulance and I was able to ride in the ambulance also, but I had to ride in the front. We were very worried about how Madison would do since she hates car seats, but she did fine.
Shortly after we got to Mott, we felt very relieved. Everyone there was ready for her and had plans and tests ready. They immediately did a chest x-ray, and some blood tests. They took her off oxygen, and just let her sleep through the night, so they could look over her information and make more of a plan. The electrophysiologist also came in to take a look at her.
Since she is in the intensive care, we could not stay with her in the room because there is no place to sleep, so we had to leave for the night. This was a concern and a relief. We didn't want to leave her for the night, but she basically had her own nurse that was going to stay in the room with her who would do feedings and comfort her if she was upset. We knew she was in good hands, so we went to stay at a hotel for the evening. It was really nice to get a good nights sleep in a real bed.
This morning when we arrived at the hospital Madison was sleeping. We were told that she hadn't eaten since 4:00 a.m. because they had to do a procedure that required her not to eat. When she woke up, she was HUNGRY!!! We spent about two hours trying to keep her settled until they could start the procedure. Thank goodness for sugar water!
Finally, the electrophysiologist came in to do the procedure. The procedure entailed taking a probe and putting it down her nose and throat. This probe enabled them to get some more information about her heart. This procedure also allowed them to give her an electric current that could possibly take her out of STV.
This gave them some good information. It also took her out of STV for a moment, but she went right back into it. This allowed them to diagnose her with PJRT. Which is Persistent Junctional Reciprocating Tachycardia. Which is a form of STV.
Here is the plan for Madison. Within the next hour, they are going to perform an echocardiogram on her to get more information about the functionality of her heart. If her heart functionality is adequate they are going to try a new medicine to try to break the PJRT. The doctor is not very optimistic about the new medicine working.
If the new medicine does not work, or if they are unable to try the new medicine, they are going to do a procedure called ablation. (For more info about ablation, click here.) This procedure is performed under general anesthesia and has risks, but considering she is in such good health, the risks are less. This procedure will likely be done on Wednesday, if they try the medication and it doesn't work. If they are unable try the new medication, they may do it earlier. She will be able to go home a day after the ablation and would not need any further treatment.
Whew, I guess that is all. We are SOOO happy that we came here! We feel like Madison is well taken care of and everyone here is SOOOO wonderful.
Shortly after we got to Mott, we felt very relieved. Everyone there was ready for her and had plans and tests ready. They immediately did a chest x-ray, and some blood tests. They took her off oxygen, and just let her sleep through the night, so they could look over her information and make more of a plan. The electrophysiologist also came in to take a look at her.
Since she is in the intensive care, we could not stay with her in the room because there is no place to sleep, so we had to leave for the night. This was a concern and a relief. We didn't want to leave her for the night, but she basically had her own nurse that was going to stay in the room with her who would do feedings and comfort her if she was upset. We knew she was in good hands, so we went to stay at a hotel for the evening. It was really nice to get a good nights sleep in a real bed.
This morning when we arrived at the hospital Madison was sleeping. We were told that she hadn't eaten since 4:00 a.m. because they had to do a procedure that required her not to eat. When she woke up, she was HUNGRY!!! We spent about two hours trying to keep her settled until they could start the procedure. Thank goodness for sugar water!
Finally, the electrophysiologist came in to do the procedure. The procedure entailed taking a probe and putting it down her nose and throat. This probe enabled them to get some more information about her heart. This procedure also allowed them to give her an electric current that could possibly take her out of STV.
This gave them some good information. It also took her out of STV for a moment, but she went right back into it. This allowed them to diagnose her with PJRT. Which is Persistent Junctional Reciprocating Tachycardia. Which is a form of STV.
Here is the plan for Madison. Within the next hour, they are going to perform an echocardiogram on her to get more information about the functionality of her heart. If her heart functionality is adequate they are going to try a new medicine to try to break the PJRT. The doctor is not very optimistic about the new medicine working.
If the new medicine does not work, or if they are unable to try the new medicine, they are going to do a procedure called ablation. (For more info about ablation, click here.) This procedure is performed under general anesthesia and has risks, but considering she is in such good health, the risks are less. This procedure will likely be done on Wednesday, if they try the medication and it doesn't work. If they are unable try the new medication, they may do it earlier. She will be able to go home a day after the ablation and would not need any further treatment.
Whew, I guess that is all. We are SOOO happy that we came here! We feel like Madison is well taken care of and everyone here is SOOOO wonderful.
4.7.09
Heading to Mott
Lots has happened since my last post. I'll try my best to remember everything.
I'll start with last night. We spoke with one of the cardiologists and the head physician discussing Madison's progress. They both felt that keeping her out of STV was most important and that she was out of STV. The cardiologist really felt that her elevated heart rate was because her heart needed time to repair itself. After talking with both doctors we felt much better. Her heart rate was significantly down all last night also.
This morning, her heart rate was elevated again and she went into STV. They started to treat it by increasing the dose of the medicine she was currently on and called in the cardiologist. This was a cardiologist we have not yet seen, but he is in the same practice as the other two we have worked with. He came in, and after only a short time, reported that she was NOT out of STV like we thought. In fact, he said with the heart rates as high as they have been, it's likely she has been in STV the majority of the time.
This was surprising and alarming to Matt and I. On one hand, we felt better because we felt like he knew what he was talking about and that he had a plan, but on the other hand, we were very frustrated to be misinformed all this time.
We had been considering going to Mott hospital in Ann Arbor, but really was struggling with the decision. We wanted what is best for Madison. After this incident and some thinking and prayers, we decided to ask to be transfered to Mott.
Since that decision around noon, her heart rate has stayed elevated and it appears she is still in STV, even though she is at the highest dose of medicine.
We feel it is time to go. We are waiting for word from U of M to find out if there is a bed available and when. We are hoping to be transferred today. Madison will ride in an ambulance with me and a transport nurse. Matt will follow with our vehicle.
Please pray for a safe transfer and for some answers to get Madison home and healthy!
I'll start with last night. We spoke with one of the cardiologists and the head physician discussing Madison's progress. They both felt that keeping her out of STV was most important and that she was out of STV. The cardiologist really felt that her elevated heart rate was because her heart needed time to repair itself. After talking with both doctors we felt much better. Her heart rate was significantly down all last night also.
This morning, her heart rate was elevated again and she went into STV. They started to treat it by increasing the dose of the medicine she was currently on and called in the cardiologist. This was a cardiologist we have not yet seen, but he is in the same practice as the other two we have worked with. He came in, and after only a short time, reported that she was NOT out of STV like we thought. In fact, he said with the heart rates as high as they have been, it's likely she has been in STV the majority of the time.
This was surprising and alarming to Matt and I. On one hand, we felt better because we felt like he knew what he was talking about and that he had a plan, but on the other hand, we were very frustrated to be misinformed all this time.
We had been considering going to Mott hospital in Ann Arbor, but really was struggling with the decision. We wanted what is best for Madison. After this incident and some thinking and prayers, we decided to ask to be transfered to Mott.
Since that decision around noon, her heart rate has stayed elevated and it appears she is still in STV, even though she is at the highest dose of medicine.
We feel it is time to go. We are waiting for word from U of M to find out if there is a bed available and when. We are hoping to be transferred today. Madison will ride in an ambulance with me and a transport nurse. Matt will follow with our vehicle.
Please pray for a safe transfer and for some answers to get Madison home and healthy!
3.7.09
Friday, July 3rd
At about four this morning, Madison went back into STV. We thought this might happen after one of the medicines they gave her wore off. They tried one medicine twice and then resorted back to the medicine they took her off. That medicine worked and after a short while, she was back out of STV. They are going to keep her on this medication because they have found that it seems to work best, even though they still are wondering if and how it is effecting her thyroid.
Last night, they weren't able to draw blood out of the central line they put in her groin. Luckily this morning, they were able to fix the line, but not without some pain and tears, but it's better than having to poke her everytime they need blood. (And they take blood A LOT!)
They are still running various tests and now she has to have a blood transfusion because her hemoglobin is low. They are still trying to figure out exactly why her heart rate is elevated.
Pray for answers!
Last night, they weren't able to draw blood out of the central line they put in her groin. Luckily this morning, they were able to fix the line, but not without some pain and tears, but it's better than having to poke her everytime they need blood. (And they take blood A LOT!)
They are still running various tests and now she has to have a blood transfusion because her hemoglobin is low. They are still trying to figure out exactly why her heart rate is elevated.
Pray for answers!
2.7.09
Update on Madison
It's 9:30 on Thursday, July 2nd. I can't sleep even though I have had very little sleep within the past 3 days, so I thought I would type a quick update.
Madison continues to have a high heart rate. The SVT seems to have subsided and she has not had new prolonged episodes of it. They are still trying to figure out why she has the elevated heart rate. Some signs point to hyperthyroidism, but that seems to be a debate among a few of the doctors.
They are also playing with different medications. They took her off one today that may possibly put her back into SVT, but so far so good.
Keep Praying!!!
Madison continues to have a high heart rate. The SVT seems to have subsided and she has not had new prolonged episodes of it. They are still trying to figure out why she has the elevated heart rate. Some signs point to hyperthyroidism, but that seems to be a debate among a few of the doctors.
They are also playing with different medications. They took her off one today that may possibly put her back into SVT, but so far so good.
Keep Praying!!!
Madison's Health
On Tuesday, June 30th, we took Madison to her 8 week check up. While we were there her Pediatrician checked her heart rate and noticed it was elevated to 200. (The highest it really should be is 180) He ordered a chest x-ray, an EKG, and an ultrasound of her heart. The x-ray we were able to get done that day. The EKG and ultrasound had to be done the following day.
On Wednesday, July 1st at 3:15 we took Madison to the Children's Heart Center to get her EKG and ultrasound done. After a few minutes of testing they called the pediatric cardiologist back to the office to look over the results because of numerous concerns they had, one being that her heart rate was up to 240. The pediatric cardiologist came very quickly, explained to us that Madison had SVT, and sent us immediately to the Pediatric Intensive Care Unit (PICU).
When we got to the PICU, they began working on her immediately to try to get her out of SVT. If I understand correctly, SVT is basically when the electrical impulses in her heart aren't working correctly, causing her heart to beat "incorrectly". For more on SVT, click here.
They immediately started an IV line in her groin to administer medicine which is supposed to quickly trigger her out of SVT. Getting the IV line in proved to be very challenging and it took them a while. (It seemed like 1/2 hour but I'm not sure.) After they got the IV line in, they were able to administer the medication to stop the SVT. It worked for a minute, but then she went right back into SVT.
They then tried the same medication again, and then the same thing happened. Since then they have tried I believe three different medications.
The good news is that it looks like she is finally out of SVT, but her heart rate is still too high. They discovered that she has an elevated thyroid and thinks that may be the cause of her elevated heart rate. They are bringing in an endocrinologist and the neonatal team to help figure out why her thyroid is elevated.
Right now she is still showing lots of very positive signs, including the fact that she is very alert, she is eating well, her urine output is great, and many other tests have proved to have positive results.
It looks like we will not be going home anytime soon. Please pray for our Madison Rose. She's our little fighter.
On Wednesday, July 1st at 3:15 we took Madison to the Children's Heart Center to get her EKG and ultrasound done. After a few minutes of testing they called the pediatric cardiologist back to the office to look over the results because of numerous concerns they had, one being that her heart rate was up to 240. The pediatric cardiologist came very quickly, explained to us that Madison had SVT, and sent us immediately to the Pediatric Intensive Care Unit (PICU).
When we got to the PICU, they began working on her immediately to try to get her out of SVT. If I understand correctly, SVT is basically when the electrical impulses in her heart aren't working correctly, causing her heart to beat "incorrectly". For more on SVT, click here.
They immediately started an IV line in her groin to administer medicine which is supposed to quickly trigger her out of SVT. Getting the IV line in proved to be very challenging and it took them a while. (It seemed like 1/2 hour but I'm not sure.) After they got the IV line in, they were able to administer the medication to stop the SVT. It worked for a minute, but then she went right back into SVT.
They then tried the same medication again, and then the same thing happened. Since then they have tried I believe three different medications.
The good news is that it looks like she is finally out of SVT, but her heart rate is still too high. They discovered that she has an elevated thyroid and thinks that may be the cause of her elevated heart rate. They are bringing in an endocrinologist and the neonatal team to help figure out why her thyroid is elevated.
Right now she is still showing lots of very positive signs, including the fact that she is very alert, she is eating well, her urine output is great, and many other tests have proved to have positive results.
It looks like we will not be going home anytime soon. Please pray for our Madison Rose. She's our little fighter.
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