Today is a day we have been waiting a long while for as Audra officially weighs more now than I did when I was born. She is a big baby weighing in at 10 lbs, 8 oz today. Her oxygen saturation levels and blood pressures were all in the normal ranges and everything sounded good.
We are off to the speech and feeding pathologist in a bit and tomorrow we have appointments with our cardiologist and GI. Never a dull moment. Audra is calling :)
Tuesday, June 5, 2012
Friday, May 25, 2012
Weight gain :)
So we are trying not to get too excited but Audra had another great weight gain! She is almost up 2 lbs from her discharge weight. It makes having the feeding tube easier to stomach (pun intended) because she is doing so well with her weight. As the weight comes, so does strength and hopefully she will be able to take her full bottle.
Audra's blood pressure and oxygen saturation levels looked good even though she hated having her blood pressure taken on her arm. We can usually calm her down pretty quickly but when that blood pressure cuff goes on her arm, she freaks out and only taking it off helps. Poor girl.
We are looking forward to some days of no appointments! Hooray! We are also sort of just waiting for something (bad) to happen. It sounds so awful to say but since things are really settling down and going well, we worry. Well, we have decided to (try) not worry so much about her weight since she is having such great weight gains. We shall see about that.
I go back to work in just two weeks. That gives me more than enough to worry about despite having the best possible care for our daughters arranged.
Audra's blood pressure and oxygen saturation levels looked good even though she hated having her blood pressure taken on her arm. We can usually calm her down pretty quickly but when that blood pressure cuff goes on her arm, she freaks out and only taking it off helps. Poor girl.
We are looking forward to some days of no appointments! Hooray! We are also sort of just waiting for something (bad) to happen. It sounds so awful to say but since things are really settling down and going well, we worry. Well, we have decided to (try) not worry so much about her weight since she is having such great weight gains. We shall see about that.
I go back to work in just two weeks. That gives me more than enough to worry about despite having the best possible care for our daughters arranged.
Wednesday, May 23, 2012
Feeding Eval
So this morning we had our evaluation with a speech and feeding pathologist. Audra spit up in her car seat before we even got out the door so we weren't off to a good start. Then I may have panicked a bit when we got to the waiting room that opened to the medical center lobby and had kids running all around. I asked for a private room to keep her from the germs. It seemed that I was the first person to ever do this by their reaction but they quickly found a room for me. Then I found that I brought the second copy of the paperwork that I didn't fill out, rather than the completed first copy. Ugh. And to top it off, our therapist said she only had an hour for our two hour appointment. Not a good start.
But we overcame these issues and went through Audra's history. Then Audra had to eat. It was past time for her to eat but she wasn't really into it. Ugh. Not a very good evaluation but the therapist was able to spend longer than just the hour she stated she had.
We went go over some things we can do with Audra to try to help her improve her feeds. The therapist thinks that Audra tires out before she can finish her bottle and that she should be gaining strength. So we have to try the tips she gave us and will go back in two weeks. While it stinks to have a feeding tube, at least we do not have to fight with her to get the nutrition she needs. Also, we need to follow-up with our GI because the therapist wasn't sure we needed the swallow study and we do not want to have to do extra procedures if we do not have to.
Tomorrow we only have our home care nurse coming, which will be so nice after all these other appointments. But we have to get Audra's blood pressure, which is already increasing my blood pressure :( We just hope all of her numbers come back in the right ranges and that we continue to have a weight gain.
All the best!
But we overcame these issues and went through Audra's history. Then Audra had to eat. It was past time for her to eat but she wasn't really into it. Ugh. Not a very good evaluation but the therapist was able to spend longer than just the hour she stated she had.
We went go over some things we can do with Audra to try to help her improve her feeds. The therapist thinks that Audra tires out before she can finish her bottle and that she should be gaining strength. So we have to try the tips she gave us and will go back in two weeks. While it stinks to have a feeding tube, at least we do not have to fight with her to get the nutrition she needs. Also, we need to follow-up with our GI because the therapist wasn't sure we needed the swallow study and we do not want to have to do extra procedures if we do not have to.
Tomorrow we only have our home care nurse coming, which will be so nice after all these other appointments. But we have to get Audra's blood pressure, which is already increasing my blood pressure :( We just hope all of her numbers come back in the right ranges and that we continue to have a weight gain.
All the best!
Tuesday, May 22, 2012
August 8th
We are scheduled for Audra's second surgery on August 8th. I am so excited and scared at the same time.
This morning when we were at our pediatrician's office with the nurse, my phone rang. Of course, I could not answer it but it was UofM calling to schedule our surgery and pre-op work. As soon as the nurse left the room, I checked my voicemail, having seen that it was the general UofM phone number. I quickly called back, while waiting for our doctor. I had more than enough time to call back and get all the details. And I even had enough time to call my husband and mom to share the news. I probably could have made a post too with the extra time we had waiting but Audra wanted a little more attention :)
We are getting some pre-op work done on August 1st and a catheterization on August 2nd. These are all outpatient procedures and we will drive back and forth these days. Then the next big surgery is August 8th. We had wanted to do the catheterization the day before surgery but Dr. Bove requested it a week before, and of course, we will do what he prefers. It seems so surreal to have our next date for surgery. It is 12 weeks away but will be here before we know it.
In other good news, Audra had another good weight gain. She is maintaining her growth curve and is staying on the charts which are pretty big accomplishments for a heart baby. We are so proud of her. She has worked really hard to get to this point. She did okay with her shots. She stayed mad at me for a bit but then fell asleep on the way home. She did well the rest of the day too.
Tomorrow we have a feeding evaluation. Hopefully we will be able to time her feeding so she will eat at the appointment. We are still waiting to schedule the swallow study.
Thanks for checking in!!!
This morning when we were at our pediatrician's office with the nurse, my phone rang. Of course, I could not answer it but it was UofM calling to schedule our surgery and pre-op work. As soon as the nurse left the room, I checked my voicemail, having seen that it was the general UofM phone number. I quickly called back, while waiting for our doctor. I had more than enough time to call back and get all the details. And I even had enough time to call my husband and mom to share the news. I probably could have made a post too with the extra time we had waiting but Audra wanted a little more attention :)
We are getting some pre-op work done on August 1st and a catheterization on August 2nd. These are all outpatient procedures and we will drive back and forth these days. Then the next big surgery is August 8th. We had wanted to do the catheterization the day before surgery but Dr. Bove requested it a week before, and of course, we will do what he prefers. It seems so surreal to have our next date for surgery. It is 12 weeks away but will be here before we know it.
In other good news, Audra had another good weight gain. She is maintaining her growth curve and is staying on the charts which are pretty big accomplishments for a heart baby. We are so proud of her. She has worked really hard to get to this point. She did okay with her shots. She stayed mad at me for a bit but then fell asleep on the way home. She did well the rest of the day too.
Tomorrow we have a feeding evaluation. Hopefully we will be able to time her feeding so she will eat at the appointment. We are still waiting to schedule the swallow study.
Thanks for checking in!!!
Monday, May 21, 2012
FAQs
So we have gotten some more recent FAQs that we want to pass along answers to. Again, if you see a question you asked here, don't feel bad. We just want to share the info :)
Q: When will I get to meet Audra?
A: Not for a while still. If Audra gets sick, even just a small cold, we have to take her to the emergency room. Once she has her second surgery, she may be able to meet some more family and friends but even then she won't be going out too much. Thanks for understanding.
Q:
Q: When will I get to meet Audra?
A: Not for a while still. If Audra gets sick, even just a small cold, we have to take her to the emergency room. Once she has her second surgery, she may be able to meet some more family and friends but even then she won't be going out too much. Thanks for understanding.
Q:
More Evaluations
So we had our appointment with our GI today. The short of it is that she wants to have Audra work with a few specialists on her feeding before we get a g tube put into her stomach. Also, we adjusted her reflux medicine, which already seems to be helping.
The long of it is that we are scheduling an appointment for a swallow study that will evaluate and show how she is swallowing to make sure there are not some issues there. We also have an appointment with a speech and feeding pathologist - she called on her day off after our GI called her about Audra. That makes me happy. She will do an evaluation and then we will work with her going forward for therapy. Hopefully this is more fruitful than with the home care OT. Our GI says that she has had good luck with her cardiac patients, so we are hopeful. The GI wants to give Audra until at least her next surgery (which we are waiting to hear the date) to try to improve her feeding. Depending on how she is doing then, we may consider the g tube that is put directly into her stomach. It is going to take some hard work but hopefully we can get Audra to drink the calories she needs (that continue to increase) through the bottle.
So we have more appointments and more evaluations ahead of us but we feel that we are on the right track. The good news is that Audra is doing well and gaining weight so we are a bit more flexible with our options.
Time to get some things done while both girls sleep :) or not... Baby is awake before I can even put her down.
The long of it is that we are scheduling an appointment for a swallow study that will evaluate and show how she is swallowing to make sure there are not some issues there. We also have an appointment with a speech and feeding pathologist - she called on her day off after our GI called her about Audra. That makes me happy. She will do an evaluation and then we will work with her going forward for therapy. Hopefully this is more fruitful than with the home care OT. Our GI says that she has had good luck with her cardiac patients, so we are hopeful. The GI wants to give Audra until at least her next surgery (which we are waiting to hear the date) to try to improve her feeding. Depending on how she is doing then, we may consider the g tube that is put directly into her stomach. It is going to take some hard work but hopefully we can get Audra to drink the calories she needs (that continue to increase) through the bottle.
So we have more appointments and more evaluations ahead of us but we feel that we are on the right track. The good news is that Audra is doing well and gaining weight so we are a bit more flexible with our options.
Time to get some things done while both girls sleep :) or not... Baby is awake before I can even put her down.
Saturday, May 19, 2012
Two Months Old!
Audra is two months old! She is such a strong little girl and we are so proud of her. She has been through more in her time here than most. And she still has a long way to go.
We are excited to meet with the GI tomorrow to deal with the feeding issues. Audra continues to struggle with her feedings, taking only about half of what she needs. Also, her reflux is still an issue that we need to deal with. The good news is that she still had a small weight gain.
Also, we go to Audra's ped on Tuesday for her two month appointment. She will get immunizations, which is of course good and bad for the many obvious reasons.
Time is flying and we are still waiting to hear from UofM about the next surgery. We will keep you posted. Thank you do very much for taking the time to read this. It really helps when we talk to people that we do not have to go through the general ideas. So thank you :)
We are excited to meet with the GI tomorrow to deal with the feeding issues. Audra continues to struggle with her feedings, taking only about half of what she needs. Also, her reflux is still an issue that we need to deal with. The good news is that she still had a small weight gain.
Also, we go to Audra's ped on Tuesday for her two month appointment. She will get immunizations, which is of course good and bad for the many obvious reasons.
Time is flying and we are still waiting to hear from UofM about the next surgery. We will keep you posted. Thank you do very much for taking the time to read this. It really helps when we talk to people that we do not have to go through the general ideas. So thank you :)
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