So we are back on the road of progress. Audra started her feedings again and is tolerating them much better. It turns out her feeding tube was 4 cm too deep. That makes a huge difference for someone so small.
We are still looking at a discharge of either Tuesday or Wednesday, if all goes well. This is so much earlier than anticipated! We were told 2-3 weeks after her surgery if all goes well and we may be out two days short of that two week mark. Needless to say we feel very blessed that so many things have gone our way and that Audra is such a little fighter :)
We also may not have to supplement the milk Audra receives because of the calorie content. They "spun" the milk and determined that it is 27 calories per oz, where the typical milk is only 20. We shall see how things progress.
We really appreciate all the support and prayers we have been receiving. It makes a huge difference. Thank you for all the cards, texts, emails, phone calls, and extra special things that have been sent to us. All are highly appreciated and we are very thankful.
Saturday, March 31, 2012
Friday, March 30, 2012
Roller Coaster
Today has been a roller coaster. We found out that we looking at going home on Tuesday. This is very exciting and scary at the same time. Obviously, this was an up part of the day.
We are currently recovering from the low part of the day that lasted since around noon. Audra was getting milk every three hours and started to get really fussy. We are not talking about a little fussy. We are talking about holding her breath, turning blue fussy. And this came out if no where for us because she had been doing so well overall and with the smaller feedings.
No one had an answer. So finally they did an X-ray on her stomach. It turns out that her feeding tube was placed too deep - past her stomach - and her system couldn't handle the larger feedings. She has a bunch of air in her system that she needs to clear out.
So Audra is going to be taking a pause on her feedings tonight and starting over in the morning. We are very thankful that we were able to identify a cause to her problems and now fix them. We were very scared that the X-ray would show nothing and we would be left scratching our heads as to the problem.
In the scheme of things, this is only a minor setback. We feel blessed that this has been our roughest day because we just have to look around to realize that things could be much worse.
Thank you to everyone for your support and prayers!
We are currently recovering from the low part of the day that lasted since around noon. Audra was getting milk every three hours and started to get really fussy. We are not talking about a little fussy. We are talking about holding her breath, turning blue fussy. And this came out if no where for us because she had been doing so well overall and with the smaller feedings.
No one had an answer. So finally they did an X-ray on her stomach. It turns out that her feeding tube was placed too deep - past her stomach - and her system couldn't handle the larger feedings. She has a bunch of air in her system that she needs to clear out.
So Audra is going to be taking a pause on her feedings tonight and starting over in the morning. We are very thankful that we were able to identify a cause to her problems and now fix them. We were very scared that the X-ray would show nothing and we would be left scratching our heads as to the problem.
In the scheme of things, this is only a minor setback. We feel blessed that this has been our roughest day because we just have to look around to realize that things could be much worse.
Thank you to everyone for your support and prayers!
Thursday, March 29, 2012
We Are in General Care
Today has been a very big day! At first we were told we had a bed in moderate care and then they moved us directly to the general care floor. This is a big step and we are excited & scared both at the same time. And unexpectedly, the cardiologist even mentioned that we might be looking at going home next week! Next week!?!? We cannot believe how blessed we have been and Audra is so strong and tough! We still have a long way to go but things are looking good for now.
The echo that was supposed to be this morning was delayed to this afternoon. But the results were good. Everything looks as expected :) Great news!
Now we are working towards going home - according to the team here. It is a change in mentality from intensive care where the mentality is get you well enough to go to general care. Audra is still building up her feedings and will be able to start drinking some of her milk. She has been pretty active with her paci so we are hoping that she will be nice and strong. One of the perks of the general care floor is that both parents can stay in the room. The nurses also promptly dressed Audra in one of her outfits :)
We also talked to the cardiologist about Audra's next surgery. It is likely to be in August. It is crazy to even try to think that far out since we have just been taking it day by day. Our cardiologist at home will be in charge of determining when Audra is ready.
Our older daughter had a blast with us today and was even happy to give Audra her paci :) What a great big sister!
The echo that was supposed to be this morning was delayed to this afternoon. But the results were good. Everything looks as expected :) Great news!
Now we are working towards going home - according to the team here. It is a change in mentality from intensive care where the mentality is get you well enough to go to general care. Audra is still building up her feedings and will be able to start drinking some of her milk. She has been pretty active with her paci so we are hoping that she will be nice and strong. One of the perks of the general care floor is that both parents can stay in the room. The nurses also promptly dressed Audra in one of her outfits :)
We also talked to the cardiologist about Audra's next surgery. It is likely to be in August. It is crazy to even try to think that far out since we have just been taking it day by day. Our cardiologist at home will be in charge of determining when Audra is ready.
Our older daughter had a blast with us today and was even happy to give Audra her paci :) What a great big sister!
Wednesday, March 28, 2012
Progress
Today Audra made a lot of good progress! She got her chest tube out. She is off her breathing tube (the kind grandmas and grandpas sometimes have) and breathing normal air. Her feedings with her feeding tube are increasing in amount and we are looking towards moving from a continuous feed to larger amounts of milk spaced apart. This is the next step towards oral feedings :) So far, so good for Baby Audra!
On a down note, we are getting kicked out of the In-house Ronald McDonald House and there is no room across the street at the real House. The In-house is supposed to only be short term and the real House across the street is for longer stays. We have not made it off the wait list in a week. So we have decided that I will stay in the room with Audra and my husband will travel back home. He is going back to work next week so this will be a good transition, I guess. If this doesn't work out we will get a hotel close by. We shall see.
We are looking forward to Audra's echo in the morning in a nervous way. Please continue to keep her in your thoughts and prayers. She is so strong and courageous!
On a down note, we are getting kicked out of the In-house Ronald McDonald House and there is no room across the street at the real House. The In-house is supposed to only be short term and the real House across the street is for longer stays. We have not made it off the wait list in a week. So we have decided that I will stay in the room with Audra and my husband will travel back home. He is going back to work next week so this will be a good transition, I guess. If this doesn't work out we will get a hotel close by. We shall see.
We are looking forward to Audra's echo in the morning in a nervous way. Please continue to keep her in your thoughts and prayers. She is so strong and courageous!
Fussy Night
So Audra had a fussy night last night but nothing major happened. She had her first blow-out diaper. Her dressing came off her chest and there is a bit of puss in two spots. But they do not think it is infected, which is good news. We will keep our eye on it. As if there isn't something we are keeping our eye on. Overall she is still going really well.
Today Audra will get her chest tube out. The chest tube allows for drainage from her chest. There is very little to drain now so we are ready to take it out. Another step in the right direction but we have to keep a close eye on her (as always, right).
We have the orders in to move to moderate care but there are only 6 beds in moderate care and there are 2 kids ahead of us to move. So they said we will stay here and what usually happens is that by the time a bed opens up, we will be ready to move to the general care floor for cardiology. We shall see but for now we are staying put.
Also one of the nurses told us about Rockabye Baby, which are albums of rock music made into lullabies. How did we not know about this before?!? So Audra (and Mama and Papa too) have been rocking out lullaby style :) And we even had a gift card from our Aunt to buy them with. Check it out on iTunes if you haven't heard them.
Today Audra will get her chest tube out. The chest tube allows for drainage from her chest. There is very little to drain now so we are ready to take it out. Another step in the right direction but we have to keep a close eye on her (as always, right).
We have the orders in to move to moderate care but there are only 6 beds in moderate care and there are 2 kids ahead of us to move. So they said we will stay here and what usually happens is that by the time a bed opens up, we will be ready to move to the general care floor for cardiology. We shall see but for now we are staying put.
Also one of the nurses told us about Rockabye Baby, which are albums of rock music made into lullabies. How did we not know about this before?!? So Audra (and Mama and Papa too) have been rocking out lullaby style :) And we even had a gift card from our Aunt to buy them with. Check it out on iTunes if you haven't heard them.
Tuesday, March 27, 2012
Another Good Day
We had another uneventful day, which is always great. Dr. Bove stopped by and said that Audra is a "star" and "very strong"!! We told him that her name means noble strength and he said it is fitting :)
Audra has tolerated her feedings well and is up to 5 mL per hour. She is getting weened off most of her iv meds and is taking a few meds in her feeding tube now instead.
Audra had an echo this morning. Her heart function looks as expected, which is good. We will have a repeat echo on Thursday to make sure everything still looks good. Clinically, she is doing very well as all of her numbers are right in target.
We are still looking at moving to moderate care tomorrow. This is exciting but scary! We have had one nurse for Audra this entire time and in moderate care, it is 4 patients per nurse. This will be a big change but she shouldn't need as much direct attention. Thus, the moderate care. But it is still scary nonetheless.
Her chest dressings will get removed tonight at bath time. We are looking forward to that although not to hearing Audra cry as the nurse removes the sticky portion of the bandage :( Sorry baby!
We enjoyed some nice family time today! Thank you to everyone for your continued support and prayers!
Audra has tolerated her feedings well and is up to 5 mL per hour. She is getting weened off most of her iv meds and is taking a few meds in her feeding tube now instead.
Audra had an echo this morning. Her heart function looks as expected, which is good. We will have a repeat echo on Thursday to make sure everything still looks good. Clinically, she is doing very well as all of her numbers are right in target.
We are still looking at moving to moderate care tomorrow. This is exciting but scary! We have had one nurse for Audra this entire time and in moderate care, it is 4 patients per nurse. This will be a big change but she shouldn't need as much direct attention. Thus, the moderate care. But it is still scary nonetheless.
Her chest dressings will get removed tonight at bath time. We are looking forward to that although not to hearing Audra cry as the nurse removes the sticky portion of the bandage :( Sorry baby!
We enjoyed some nice family time today! Thank you to everyone for your continued support and prayers!
First Feeding
Audra had her first feeding late last night! This is an important step because parts of her digestive system can lose functionality if she is not digesting the food right. We learned how to place the feeding tube, which Audra did not like - sorry baby! But once the tube was in place and the breast milk was delivered, she was doing fine.
We are looking forward to seeing her chest today as her dressings come off! They didn't have to use any stitches in the very top layer if her chest, so the scar should heal very nicely. They will use the same scar for her future surgeries as well so how it looks now really doesn't matter. But they said she has good skin that heals well :)
We are looking forward to seeing her chest today as her dressings come off! They didn't have to use any stitches in the very top layer if her chest, so the scar should heal very nicely. They will use the same scar for her future surgeries as well so how it looks now really doesn't matter. But they said she has good skin that heals well :)
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