Today we had a visit from our home care nurse. It was an odd time but it ended up working out. Audra is doing well. All of her stats look good - other than the obvious one. She lost some weight, which we knew. She is still well below 5% weight loss, which is our check point with are cardiologist. When (if?) she gets to 5%, we have to evaluate if we should continue or not. 10% weight loss is the threshold for having to put back in the tube. We are hopeful that we won't get to that point as every day Audra is eating more. She is on track today to have her biggest eating day ever. She also nearly finished her bottle last night for the first time ever. We remain optimistic :)
Get fired up it's (almost) game day! Go Blue!
Friday, August 31, 2012
Thursday, August 30, 2012
Tube Weaning - Day 6
Today was another day of progress for Audra! She had an all time high for both overall oral intake for the day and for one session. This was the good news. And now for the bad news. She still isn't taking as much as we want her to and she had her first weight loss. It was not significant but hopefully we can turn this around! We are proud of the progress that she is making and are hoping and praying that she continues along this path.
I have been emailing with some of the moms that did the same program and have heart babies themselves. One mom is in Ann Arbor and shared her feeding journal. It is nice to have to compare - although every child is different, we know. But it helps to see we are right on the same path that they were on and their baby succeeded :)
I have been emailing with some of the moms that did the same program and have heart babies themselves. One mom is in Ann Arbor and shared her feeding journal. It is nice to have to compare - although every child is different, we know. But it helps to see we are right on the same path that they were on and their baby succeeded :)
Wednesday, August 29, 2012
Tube Weaning - Day 5
Today was Audra's first tube free day! She was in a good mood with her new freedom. Now comes the hard part - eating all on her own. She ate more today orally than she ever has before. That is the bright spot. But this is still not enough. We expect that she will gradually build up over the next week or so. She has her ups and downs and we look forward to making more progress in the small steps that we can.
Tuesday, August 28, 2012
Last Tube Feed (we hope)
Audra just finished what we hope will be her last tube feed!! She took the most she has ever taken from the bottle today but it is still not enough. Now she just needs to pick up the pace.
All went well with our friends' baby's open heart surgery today. She is already starting sprints to come off the ventilator. Good news!
We hope to have good news of our own with Audra's feeds. When she wakes up next out the tube will come! Finally!
All went well with our friends' baby's open heart surgery today. She is already starting sprints to come off the ventilator. Good news!
We hope to have good news of our own with Audra's feeds. When she wakes up next out the tube will come! Finally!
Tube Weaning - Day 4
Today is Day 4 into the tube weaning program and tonight the tube comes out! We are very excited and nervous about this.
We have been receiving great feedback for our net coaching. It is do great to feel like we have a plan and to be trying to do something to get rid of Audra's feeding tube. It seems like we have been living the definition of insanity - doing the same thing and expecting different results. So it is good to be taking steps to move forward.
Overall, Audra is doing well. She still gets frustrated and seems to wait for her belly to magically fill itself. But then she will go and have a good session. She still has a long ways to go but I do feel like we are making small steps in the right direction.
The blood draw yesterday went well and the results were good. Next up is the appointment at UofM to determine if we need to continue on the blood thinner for another 3 months or not. Hopefully NOT!
Also, thoughts and prayers are appreciated today as friends of ours have a little one going in for open heart surgery at UofM.
We have been receiving great feedback for our net coaching. It is do great to feel like we have a plan and to be trying to do something to get rid of Audra's feeding tube. It seems like we have been living the definition of insanity - doing the same thing and expecting different results. So it is good to be taking steps to move forward.
Overall, Audra is doing well. She still gets frustrated and seems to wait for her belly to magically fill itself. But then she will go and have a good session. She still has a long ways to go but I do feel like we are making small steps in the right direction.
The blood draw yesterday went well and the results were good. Next up is the appointment at UofM to determine if we need to continue on the blood thinner for another 3 months or not. Hopefully NOT!
Also, thoughts and prayers are appreciated today as friends of ours have a little one going in for open heart surgery at UofM.
Monday, August 27, 2012
Tube Weaning - Day 3
Day 2 was another good day with Audra eating more orally than on day 1 and the most she has ever taken! At her 9 pm feed, you can tell she is worn out from the day and falls asleep shortly into her tube feed. She is only getting tune feeds at 9 pm and 3 am. Tonight we are skipping the 3 am feed. And then the 9 pm feed will go and the tube will come out.
This morning she is hungry but isn't interested in eating. Hopefully this improves quickly.
We have another blood draw this morning too. Hopefully this will be her last one for this clot! We have an appointment at UofM on September 10 to look to see if her clot is dissolved. Depending on how everything looks determines if we get to stop her blood thinner and the accompanying blood draws or have to continue them both for 3 more months.
This morning she is hungry but isn't interested in eating. Hopefully this improves quickly.
We have another blood draw this morning too. Hopefully this will be her last one for this clot! We have an appointment at UofM on September 10 to look to see if her clot is dissolved. Depending on how everything looks determines if we get to stop her blood thinner and the accompanying blood draws or have to continue them both for 3 more months.
Sunday, August 26, 2012
Tube Weaning - Day 2
Yesterday was successful in small steps. Audra took more than she ever has orally and we only used the tube twice! Those were for the night feedings and we are most concerned with those.
Audra took more orally than her basal needs, which is awesome. And she is generally interested in eating when we are trying to feed her. Hopefully this continues. Trying to feed a hungry baby who does not want to eat is very frustrating. The tube supplements put us pretty close to what she would typically get in a day with a couple of throw-ups (glamorous, I know).
So far so good today. She has taken more than this time yesterday. We are not supposed to focus on the numbers but we have to keep close track of them, which makes it hard not the focus on them. We are supposed to focus on how she is eating - only feeding her when she is interested and stopping at her first sign of disinterest. Her weight was slightly above her starting weight from yesterday!
We still have a long way to go but things are going well! The next step is to drop the 3 am tube feed. Audra rarely wakes up for this feed so we are pretty nervous how it will affect the rest of her eating. Only time will tell.
Audra took more orally than her basal needs, which is awesome. And she is generally interested in eating when we are trying to feed her. Hopefully this continues. Trying to feed a hungry baby who does not want to eat is very frustrating. The tube supplements put us pretty close to what she would typically get in a day with a couple of throw-ups (glamorous, I know).
So far so good today. She has taken more than this time yesterday. We are not supposed to focus on the numbers but we have to keep close track of them, which makes it hard not the focus on them. We are supposed to focus on how she is eating - only feeding her when she is interested and stopping at her first sign of disinterest. Her weight was slightly above her starting weight from yesterday!
We still have a long way to go but things are going well! The next step is to drop the 3 am tube feed. Audra rarely wakes up for this feed so we are pretty nervous how it will affect the rest of her eating. Only time will tell.
Saturday, August 25, 2012
Tube Weaning - Day 1
We are starting tube weaning today. It came about rather quickly. We found out on Thursday that our claim to insurance was not submitted as urgent. So it had to be resubmitted and we will not get a decision until Monday. We also found out that we could pay out if pocket and get reimbursed if insurance covers it. We had said all along that we would do it even if insurance doesn't cover it so we signed up.
Yesterday we got set up into the net coaching portal where we keep the feeding charts, communications, videos and such. We made a video and uploaded it early this morning. We got feedback from the Frau Professor Doctor (that is what a female doctor who is a professor is called in German) and we have already cut down her tube feed this morning. Here we go! Come on Audra! You can do this!!!
Today Audra rolled over for the first time. Maybe she was just so excited about starting the tube weaning?!? Okay, I doubt it. But we are very glad she is rolling over. Another reason to get rid of the tube!
Yesterday we got set up into the net coaching portal where we keep the feeding charts, communications, videos and such. We made a video and uploaded it early this morning. We got feedback from the Frau Professor Doctor (that is what a female doctor who is a professor is called in German) and we have already cut down her tube feed this morning. Here we go! Come on Audra! You can do this!!!
Today Audra rolled over for the first time. Maybe she was just so excited about starting the tube weaning?!? Okay, I doubt it. But we are very glad she is rolling over. Another reason to get rid of the tube!
Sunday, August 19, 2012
Five Months Old & Cardio Visit
Audra is already five months old! Wow! Time has gone by quickly but we have packed a lot into these five months. And she is doing well. She is in the 10-25% for both weight and length. It is all too common for cardio babies to be off the charts (on the bottom). So we are very happy with her growth.
Today was a crazy day and we had a good appointment with our cardiologist. Audra's heart function looks really good, which is music to our ears. Dr. C thought that Audra clinically looks great and loved her rolls :) We got to cut down on some of her meds, which is always a good thing. And we don't go back for THREE months. Wow! That is so exciting and scary at the same time.
Next up is feeding. We are waiting to see if the feeding program is covered by our insurance. The decision should come soon (tomorrow we hope). Then we can decide how to move forward. Overall, Audra has been taking more of her bottle. She even did well with her number 2 nipple today. She still doesn't take all that she needs, especially at night. So we will see what we have in store for us with the feeding program.
All the best! Until next time.
Today was a crazy day and we had a good appointment with our cardiologist. Audra's heart function looks really good, which is music to our ears. Dr. C thought that Audra clinically looks great and loved her rolls :) We got to cut down on some of her meds, which is always a good thing. And we don't go back for THREE months. Wow! That is so exciting and scary at the same time.
Next up is feeding. We are waiting to see if the feeding program is covered by our insurance. The decision should come soon (tomorrow we hope). Then we can decide how to move forward. Overall, Audra has been taking more of her bottle. She even did well with her number 2 nipple today. She still doesn't take all that she needs, especially at night. So we will see what we have in store for us with the feeding program.
All the best! Until next time.
Friday, August 17, 2012
Tube weaning
We will soon be starting a feeding tune weaning program! We are so excited and nervous at the same time :)
It is a net coaching program so all of our support is online and it is based out of Austria. The website to check it out is at: notube.com.
Today we talked to our cardiologist and got her official approval. It was helpful that she knew the cardiologist of one of the other heart moms that I have been emailing with about the program. We discussed everything that we need to be looking for. This is the first time we feel like we are getting some support for this feeding issue. We have had so much support for all of the cardio issues and then we are left to deal with this major feeding issue. The only support we have been given on it is to get a G tube. We want to give Audra the opportunity to be able to eat on her own before we do that. So here we are at the program.
We are hoping to start next week but we shall see. Audra has been doing well. She is taking more of her milk orally, which is encouraging. I hope once she figures out this hunger thing, she will take off in eating.
Happy Dream Cruise Weekend :)
It is a net coaching program so all of our support is online and it is based out of Austria. The website to check it out is at: notube.com.
Today we talked to our cardiologist and got her official approval. It was helpful that she knew the cardiologist of one of the other heart moms that I have been emailing with about the program. We discussed everything that we need to be looking for. This is the first time we feel like we are getting some support for this feeding issue. We have had so much support for all of the cardio issues and then we are left to deal with this major feeding issue. The only support we have been given on it is to get a G tube. We want to give Audra the opportunity to be able to eat on her own before we do that. So here we are at the program.
We are hoping to start next week but we shall see. Audra has been doing well. She is taking more of her milk orally, which is encouraging. I hope once she figures out this hunger thing, she will take off in eating.
Happy Dream Cruise Weekend :)
Tuesday, August 14, 2012
More Details
As you may have read below, I have been concerned that Audra is developing congestive heart failure. It wasn't a large concern or anything that was sending us running to the hospital. But it was enough to make me worry and question every little thing. Some may call it paranoid. I prefer observant :)
Well it turns out that for now, all is well. Audra is growing so well and really making up for lost time. Her lungs sound clear, which is obviously very important. Her oxygen saturation levels have been climbing as our cardiologist has predicted. Her blood pressure is lower than before. And she had another good weight gain. All good things. So perhaps I need to relax a little. Easier said than done.
Our phone call with the cardiologist had good news and bad news. I will start with the bad news first so if you are a good news first kind of person, then skip to the next paragraph and come back after reading it. So the bad news is that the lab ran the WRONG test on Audra's blood from Monday. She has to get blood draws to check her levels of her blood thinner because of that clot from the line in her leg back in June. We go to the cancer center because they are usually very good at drawing her blood - we had issues at the regular lab. Audra is a hard poke as they say. It is just awful. Anyway, we have had to go back one other time but we are just so upset this time. I spent a very good amount of time on the phone expressing our displeasure with the situation. I told them perhaps we should just go over to Mott if they are so incompetent We are just beside ourselves that she has to get this draw again. And who is to say it will be done properly? Well, our cardiologist has assured us she will do everything she can. The head of the lab called to apologize and gave me her cell phone number. When we went for the draw, the head nurse from our cardio office went with us. She sat with us while we waited to be called and got impatient as we usually do. The nurse discussed the procedure with the lab nurses. Basically the nurse from Monday (who was not around thank goodness) read the order wrong and just entered it wrong. We confirmed about 100 times the proper test. The nurse then did an awesome job with the draw. Then they gave Audra a teddy bear, some flowers and a Meijer gift card. It doesn't make it any better but at least they tried to do something. Her levels look good and we are set for another two weeks. September cannot get here fast enough as that is when we have our follow-up at UofM on the clot.
Now the good news. Our cardiologist has given us the preliminary green light to do the online tube weaning program for Audra. We are so excited. It is a net coaching program that is 3-4 weeks and will get her off of her dependency of her feeding tube. It basically reduces the amount we give her through the tube so that she gets hungrier and eats more. We have just registered for it and now have to do the medical evaluation.
We have been in contact with two other heart moms who have gone through the program, which is so great. One even goes to UofM for her child's treatment. Anyway, once we get more details on the feeding plan we will be able to figure out our plan. But for now we continue to improve :)
Thanks for the support!
Well it turns out that for now, all is well. Audra is growing so well and really making up for lost time. Her lungs sound clear, which is obviously very important. Her oxygen saturation levels have been climbing as our cardiologist has predicted. Her blood pressure is lower than before. And she had another good weight gain. All good things. So perhaps I need to relax a little. Easier said than done.
Our phone call with the cardiologist had good news and bad news. I will start with the bad news first so if you are a good news first kind of person, then skip to the next paragraph and come back after reading it. So the bad news is that the lab ran the WRONG test on Audra's blood from Monday. She has to get blood draws to check her levels of her blood thinner because of that clot from the line in her leg back in June. We go to the cancer center because they are usually very good at drawing her blood - we had issues at the regular lab. Audra is a hard poke as they say. It is just awful. Anyway, we have had to go back one other time but we are just so upset this time. I spent a very good amount of time on the phone expressing our displeasure with the situation. I told them perhaps we should just go over to Mott if they are so incompetent We are just beside ourselves that she has to get this draw again. And who is to say it will be done properly? Well, our cardiologist has assured us she will do everything she can. The head of the lab called to apologize and gave me her cell phone number. When we went for the draw, the head nurse from our cardio office went with us. She sat with us while we waited to be called and got impatient as we usually do. The nurse discussed the procedure with the lab nurses. Basically the nurse from Monday (who was not around thank goodness) read the order wrong and just entered it wrong. We confirmed about 100 times the proper test. The nurse then did an awesome job with the draw. Then they gave Audra a teddy bear, some flowers and a Meijer gift card. It doesn't make it any better but at least they tried to do something. Her levels look good and we are set for another two weeks. September cannot get here fast enough as that is when we have our follow-up at UofM on the clot.
Now the good news. Our cardiologist has given us the preliminary green light to do the online tube weaning program for Audra. We are so excited. It is a net coaching program that is 3-4 weeks and will get her off of her dependency of her feeding tube. It basically reduces the amount we give her through the tube so that she gets hungrier and eats more. We have just registered for it and now have to do the medical evaluation.
We have been in contact with two other heart moms who have gone through the program, which is so great. One even goes to UofM for her child's treatment. Anyway, once we get more details on the feeding plan we will be able to figure out our plan. But for now we continue to improve :)
Thanks for the support!
Good Nurse Visit
Just a quick update to let you know that our visit with our home care nurse this morning went well. Audra is doing well and our nurse thinks that Audra was just warm.
Now we are waiting for a call back from our cardiologist to get her approval for the feeding program. We talked to her yesterday and she wanted to review the material and get back to us. Looking forward to speaking with her. We will update again soon with more details about the feeding program and everything in general.
Thank you for your continued support. It is really helpful when we have these times of extra concern and just in general :)
Now we are waiting for a call back from our cardiologist to get her approval for the feeding program. We talked to her yesterday and she wanted to review the material and get back to us. Looking forward to speaking with her. We will update again soon with more details about the feeding program and everything in general.
Thank you for your continued support. It is really helpful when we have these times of extra concern and just in general :)
Saturday, August 11, 2012
August 8th & Tonight
August 8th was not what we thought it would be back in May and early June. At that time, of course, we were scheduled to have Audra's Hemi on the 8th. But as you know, we got this out of the way in June. So August 8th came and went like any other day.
It was actually a rather hectic day including our older daughter getting herself out of her crib. But we did not have to get over to Mott early in the morning and even better, we are not there now. We are very thankful to have this behind us.
We have been working on feedings with Audra and she seems to be improving overall. We are looking into a tube weaning program that will help us through Audra's dependency on her feeding tube. We hope to get the thumbs up from our cardiologist. We hope to talk with her on Monday.
Tonight there is a bit of unease in our house. We are always "keeping on eye" on this or that but tonight Audra had a flag that is really making me worry while my husband tries to keep me calm. She was sweaty when he went to put her down. This can be one of the symptoms of congestive heart failure. But it could just be that she was just hot while she was being held. We took her temp and it isn't high now. She has gained a fair amount of weight over the past few weeks, which if it is fluid retention is another symptom. But she is not showing signs of retaining fluid and our home care nurse even mentioned that fact on Tuesday. Audra just seems to be growing well. Her breathing is normal, which is very important and another symptom it she had an increased breathing rate. And there are not any other symptoms either.
Congestive heart failure is when the heart can no longer pump enough blood to the body. We are always supposed to be on the lookout for any symptoms. It builds gradually and the first steps to treat it are with medicines. We will talk to our cardiologist on Monday to see what she thinks. Audra is already getting her blood drawn on Monday so maybe the doc will add another test that gives us some more info. Then again, maybe I am worrying over nothing and it is just hot in here. Ugh. I hate worrying.
It was actually a rather hectic day including our older daughter getting herself out of her crib. But we did not have to get over to Mott early in the morning and even better, we are not there now. We are very thankful to have this behind us.
We have been working on feedings with Audra and she seems to be improving overall. We are looking into a tube weaning program that will help us through Audra's dependency on her feeding tube. We hope to get the thumbs up from our cardiologist. We hope to talk with her on Monday.
Tonight there is a bit of unease in our house. We are always "keeping on eye" on this or that but tonight Audra had a flag that is really making me worry while my husband tries to keep me calm. She was sweaty when he went to put her down. This can be one of the symptoms of congestive heart failure. But it could just be that she was just hot while she was being held. We took her temp and it isn't high now. She has gained a fair amount of weight over the past few weeks, which if it is fluid retention is another symptom. But she is not showing signs of retaining fluid and our home care nurse even mentioned that fact on Tuesday. Audra just seems to be growing well. Her breathing is normal, which is very important and another symptom it she had an increased breathing rate. And there are not any other symptoms either.
Congestive heart failure is when the heart can no longer pump enough blood to the body. We are always supposed to be on the lookout for any symptoms. It builds gradually and the first steps to treat it are with medicines. We will talk to our cardiologist on Monday to see what she thinks. Audra is already getting her blood drawn on Monday so maybe the doc will add another test that gives us some more info. Then again, maybe I am worrying over nothing and it is just hot in here. Ugh. I hate worrying.
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