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.
Sunday, August 19, 2012
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.
Sunday, July 29, 2012
6 Weeks Post-Op
Today Audra is 6 weeks post-op from her Hemi! Wow! We never thought we would be saying that in July!! She was scheduled to have her Hemi on August 8. Her pre-op days were scheduled for tomorrow and Wednesday. Things never seem to go as planned these days and we just try to go with it.
It feels so good to have 2 of the 3 required surgeries already in the past at this point. And now Audra is considered to be recovered from her surgery! She no longer seems in pain when she sneezes or coughs and things are settling into our normal.
We are getting back on the schedule with Audra's feeding pathologist so that we can make more progress with her feeding.
Also, we found out today that our pediatrician is on leave for the next few months. Not such a big deal for our older daughter but a pretty big deal for Audra. There are only 2 docs left in the practice - one we met with and doesn't really get that we need some extra help with Audra and the other only works part time. So we are looking for recommendations for a new pediatrician practice, I think.
But for right now we are going to sit back and enjoy the fact that Audra is doing well after two open heart surgeries!
It feels so good to have 2 of the 3 required surgeries already in the past at this point. And now Audra is considered to be recovered from her surgery! She no longer seems in pain when she sneezes or coughs and things are settling into our normal.
We are getting back on the schedule with Audra's feeding pathologist so that we can make more progress with her feeding.
Also, we found out today that our pediatrician is on leave for the next few months. Not such a big deal for our older daughter but a pretty big deal for Audra. There are only 2 docs left in the practice - one we met with and doesn't really get that we need some extra help with Audra and the other only works part time. So we are looking for recommendations for a new pediatrician practice, I think.
But for right now we are going to sit back and enjoy the fact that Audra is doing well after two open heart surgeries!
Thursday, July 26, 2012
Life is Precious
Having a child with a heart defect, I feel like we really do treasure our time and remember that life is precious but there are harsh reminders all around. This morning we found out that my cousin passed away late last night after she went into cardiac arrest during a "routine" surgery. I say "routine" because, as we have learned, any surgery is not to be taken lightly. It is such a shock to our entire family. She will be missed by so many. Please remember to tell those you love that you love them and do not take your time here for granted.
Our precious little Audra is doing well. We switched up what we fortify her milk with and she seems to be doing better with it - finally. She still isn't taking enough orally but she shows some signs of improvement.
She is sleeping better - in her own bassinet, which is actually the same one I slept in :) So things are looking good there.
Thank you for your continued love and support. We couldn't do this without all of you!
Our precious little Audra is doing well. We switched up what we fortify her milk with and she seems to be doing better with it - finally. She still isn't taking enough orally but she shows some signs of improvement.
She is sleeping better - in her own bassinet, which is actually the same one I slept in :) So things are looking good there.
Thank you for your continued love and support. We couldn't do this without all of you!
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