This week we are in a holding pattern until we meet with the GI next week. Audra had a small weight gain today, which is good after her two big weight gains last week. She is on the right track.
Our nurse says that it is still premature to think of giving Audra a G tube at this point and when we meet with the GI we can tell her our preference to avoid another surgery.
So this week we are just continuing to do what we have been doing and try to get her to take more from the bottle. She takes about half of what she needs. After that she refuses to eat more. When we continue to put the bottle in her mouth, she lets the milk run out and sometimes makes herself gag and get upset. Obviously not what we want. She is due to eat now and is passed out in her nap nanny. If only she would just wake up to eat here and then go right back to sleep in her nap nanny... We can dream right ;)
Monday, May 14, 2012
Sunday, May 13, 2012
Happy Mothers Day!
All is well here. Audra seems to be taking more on average with her bottle. She has been spitting up some but not enough to be concerned. Just enough to make us worry.
Happy Mothers Day to all the Moms out there - especially our Moms, now mostly known as Grandma and Oma! Having babies of our own really makes us appreciate how much you have done for us! Thank you and we love you! I think you cannot fully appreciate how much your patents do for you and care for you until you have little ones of your own.
We had a great time celebrating our older daughter's birthday yesterday! A great time was had by all :) Thanks to everyone who made it out and we missed those who couldn't be there with us!
All the best!
Happy Mothers Day to all the Moms out there - especially our Moms, now mostly known as Grandma and Oma! Having babies of our own really makes us appreciate how much you have done for us! Thank you and we love you! I think you cannot fully appreciate how much your patents do for you and care for you until you have little ones of your own.
We had a great time celebrating our older daughter's birthday yesterday! A great time was had by all :) Thanks to everyone who made it out and we missed those who couldn't be there with us!
All the best!
Saturday, May 12, 2012
Happy Birthday & Update
Two years ago we were at the hospital about to deliver our first daughter. Oh how things change in two years :) We cannot believe how big our oldest daughter has gotten. We are very excited to celebrate her birthday (after getting some sleep hopefully). She is such a great daughter and sister - she wouldn't be a big sister if she wasn't so wonderful :) We are very blessed!
Today we had our cardiologist appointment for Audra. The good news is that everything looks good, and our cardiologist actually said "great". She said that everything looks best case for HLHS and made me cry in a good way. Audra even gained another ounce! Dr. C is calling over to UofM to schedule our next surgery in the end of July or August. We should receive a call in the next two weeks. I cannot believe that we are already talking about surgery number two! Of course, just because we schedule it doesn't mean the date won't change. But it would be nice to have a date to try to plan for.
And for the not so good news - Dr. C was not happy that Audra still has her feeding tube. She says that we cannot leave it in indefinitely. She mentioned that we may have to consider a g tube, which is a tube that is inserted directly into the stomach by another surgery. It would require another hospital stay. Now at this point it is still just a possibility. We are going to meet with a GI doc in a week from Monday to see if we can help Audra before having to go the g tube route. You gotta do what you gotta do but it sure would be great if we can figure this out!
In response to this threat, my husband got Audra to take an entire bottle!!! This was her FIRST time finishing a bottle. Of course, she followed up this performance with only taking one third of her bottle. Ugh. She does not like to eat when she is tired. Speaking of tired... I am the only one awake... Too excited about celebrating :)
Today we had our cardiologist appointment for Audra. The good news is that everything looks good, and our cardiologist actually said "great". She said that everything looks best case for HLHS and made me cry in a good way. Audra even gained another ounce! Dr. C is calling over to UofM to schedule our next surgery in the end of July or August. We should receive a call in the next two weeks. I cannot believe that we are already talking about surgery number two! Of course, just because we schedule it doesn't mean the date won't change. But it would be nice to have a date to try to plan for.
And for the not so good news - Dr. C was not happy that Audra still has her feeding tube. She says that we cannot leave it in indefinitely. She mentioned that we may have to consider a g tube, which is a tube that is inserted directly into the stomach by another surgery. It would require another hospital stay. Now at this point it is still just a possibility. We are going to meet with a GI doc in a week from Monday to see if we can help Audra before having to go the g tube route. You gotta do what you gotta do but it sure would be great if we can figure this out!
In response to this threat, my husband got Audra to take an entire bottle!!! This was her FIRST time finishing a bottle. Of course, she followed up this performance with only taking one third of her bottle. Ugh. She does not like to eat when she is tired. Speaking of tired... I am the only one awake... Too excited about celebrating :)
Thursday, May 10, 2012
Great Gain
Sometimes, I worry about my posts. Like today for instance. The title of the post is "Great Gain", which describes today. Audra had an awesome weight gain and is now 9 lbs! Yay! We are so happy!! But I do worry that I may jinx our progress. I have often felt like this but we post anyway. This is really in God's hands and not dependent on whether we make a blog posting or not. It is just in our nature to worry about things like this.
Anyway, tomorrow morning is our cardiologist appointment. Hoping and praying for an easy visit and good outcomes!
Anyway, tomorrow morning is our cardiologist appointment. Hoping and praying for an easy visit and good outcomes!
Wednesday, May 9, 2012
Just Another Update
As I type this, Audra is sleeping in my right hand and our older daughter is off on a play date. Things are settling into our normal. I am happy to report that there is nothing really to report :)
Audra had another great weight gain on Monday and tomorrow we will hope the trend continues! Then we have an appointment with our cardiologist on Friday. I am excited to make sure that everything on the inside looks as good as everything on the outside. At the same time, it is scary because sometimes everything from the outside can appear to be fine and there may be issues. Also, we MAY discuss when her next surgery should be. The current target is 4-6 months, which would be July-September. The surgery schedule is often fuller in the summer because of children having their elective surgeries. And also, we learned that the new fellows start in July. So perhaps September isn't so bad ;) Please keep Audra in your prayers :)
Audra had another great weight gain on Monday and tomorrow we will hope the trend continues! Then we have an appointment with our cardiologist on Friday. I am excited to make sure that everything on the inside looks as good as everything on the outside. At the same time, it is scary because sometimes everything from the outside can appear to be fine and there may be issues. Also, we MAY discuss when her next surgery should be. The current target is 4-6 months, which would be July-September. The surgery schedule is often fuller in the summer because of children having their elective surgeries. And also, we learned that the new fellows start in July. So perhaps September isn't so bad ;) Please keep Audra in your prayers :)
Sunday, May 6, 2012
Quiet Morning
Today has gotten off to a quiet start. Everyone is still sleeping. Audra slept in her nap nanny sleeper (a big piece of foam carved out for a comfy place to sleep) for a lot of the night. My husband spoiled me and didn't wake me up for her middle of the night feeding (one of the benefits of pumping and bottle feeding). Yes, he is the best ever! I love him very much!!!
On this quiet morning, I found an article that is about an 18 year old HLHS survivor that is interesting and inspiring. I love that he wants to be a pediatric cardiologist. I have often wondered if our daughters will be inspired to go in this direction. How awesome would it be for kids to have a doctor or nurse with the same rare heart condition?!? Anyway, his course of treatment has been much different than Audra's. He was six weeks old - Audra's age - when they first found his condition. It is amazing that he survived that long without any intervention! He is strong! And they travel to UofM for care. I would guess that Dr. Bove is his surgeon. Here is the link (you have to copy and paste as I cannot make it clickable in my mobile app):
http://www.postcrescent.com/article/20120505/APC020509/305050141/Menasha-s-Rhode-overcomes-seven-heart-surgeries
Have a good one!
On this quiet morning, I found an article that is about an 18 year old HLHS survivor that is interesting and inspiring. I love that he wants to be a pediatric cardiologist. I have often wondered if our daughters will be inspired to go in this direction. How awesome would it be for kids to have a doctor or nurse with the same rare heart condition?!? Anyway, his course of treatment has been much different than Audra's. He was six weeks old - Audra's age - when they first found his condition. It is amazing that he survived that long without any intervention! He is strong! And they travel to UofM for care. I would guess that Dr. Bove is his surgeon. Here is the link (you have to copy and paste as I cannot make it clickable in my mobile app):
http://www.postcrescent.com/article/20120505/APC020509/305050141/Menasha-s-Rhode-overcomes-seven-heart-surgeries
Have a good one!
Thursday, May 3, 2012
Gaining Again!
After three straight weigh-ins (a week and a half) at the exact same weight (ugh) we have a weight gain! Yay! It feels like we may finally have this eating thing figured out for the moment. It is a relief and we hope that this gain continues! Our nurse told me not to weigh her this weekend to keep the pressure off. We shall see about that ;)
Audra is doing much better with a bottle as we have stepped up our efforts to give her a bottle on a regular schedule. We are hoping that she will be able to take the entire amount she needs to get per feed from the bottle. Then we could get rid of her feeding tube for good - hopefully sooner rather than later. Audra likes to pull out her feeding tube. She is so quick! She has done it twice now and putting it back in is routine. We just have to remind ourselves that this is only short term.
Today the family enjoyed the weather (before the storm) and went for a nice walk. Audra enjoyed the fresh air and our older daughter enjoyed picking up sticks as usual :)
And we still have to say thank you for your continued support. We cannot say enough how much your kind words and actions help!
Audra is doing much better with a bottle as we have stepped up our efforts to give her a bottle on a regular schedule. We are hoping that she will be able to take the entire amount she needs to get per feed from the bottle. Then we could get rid of her feeding tube for good - hopefully sooner rather than later. Audra likes to pull out her feeding tube. She is so quick! She has done it twice now and putting it back in is routine. We just have to remind ourselves that this is only short term.
Today the family enjoyed the weather (before the storm) and went for a nice walk. Audra enjoyed the fresh air and our older daughter enjoyed picking up sticks as usual :)
And we still have to say thank you for your continued support. We cannot say enough how much your kind words and actions help!
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