What a Day!?!

So when I started writing this post, it was quiet at our house after a hectic day filled with running around to Audra's cardiologist appointment, tons of work meetings and a parenting group meeting. Now I write with the "gentle" purr of our generator running in the background because we lost power a few hours ago. It wouldn't be much of an issue if we didn't have about three months of milk stored in our deep freezer. Luckily my husband lives by the motto "be prepared" and he was ready to spring into action. We are expected to have power back in the morning. But for now we are running with our high capacity generator. What a great husband and dad :)

On to the rest of the post... We are getting to our new normal and finding our routine now that I am back to work. So far, so good with plenty of bumps :)

We had our first post Hemi visit with Audra's cardiologist. She said that Audra looked "great" cardiovascularly and has gained a nice amount of weight even though we are low on the calorie side for her milk. The doc expects Audra's oxygen saturation levels to continue to increase a bit more and is still concerned (as are we) with Audra's feeds. We are going to go back to the GI soon and get back to our feeding therapy. We may also see an ENT because her voice seems a bit raspy. We will keep our ears tuned into that to see if we need to schedule that appointment. Never a dull moment.

UPDATE: I never updated to say that power did come back on after 47 hours! Thank goodness for the generator!

Huge Thank Yous

Tonight we want to say THANK YOU to Grandma and Grandpa who basically dropped everything on a Monday afternoon and came to us for a much longer than expected stay. They have been such a huge help taking care of (and spoiling) our older daughter. They brought her over to see us while we were at the hospital and took her back home to keep her sort of in her routine. We could not have done this without you guys (for either of the first two surgeries) and we will miss you until we get to see you again soon.

Also a big thanks to our nanny who helped out all the time these past few months and is always giving us kind words of encouragement and wisdom. We could not have found someone better to watch our precious daughters :)

Life at home is starting to settle into a routine. We had our first visit from our home care nurse and I am getting ready to go back to work. Audra is doing well although we are not sure if she is gaining weight on her unfortified milk and in our first attempt to give her some that was fortified with a gentle formula, she did not do very well. We will see how it goes with our next attempts. On a positive note, she is picking up steam on her bottle feeds. She still has a way to go but is doing much better.

Discharged!!!

We have just been discharged but we are waiting on a delivery of our medical supplies. The sooner we get that, the sooner we can leave! We are so ready to get home although both my husband and Audra are snoozing :)

Thanks for all the love, prayers and support you all have provided over these past months! It really means so much to us. Here is to finding our new normal!

Always Tomorrow

We are starting to feel like Annie since we hear tomorrow all the time. It looks like Audra won't get to go home until Saturday. Hopefully this stays the case and we do not have any issues that further prolong her stay. We are all ready to go.

Getting Close

We are getting close to being discharged and going home! Yay! We are still hopeful for tomorrow. Audra is doing better with her feeds and is gaining a small amount of weight. For some unknown reason she is not tolerating the fortified milk that is the same as she had pre op. So right now she is just getting straight breast milk and we have a gentle formula that we may fortify her milk with later if needed.

The other concern is still her blood pressure. It has only come down a bit with her medicine and they will increase her dose. We need to get the right amount before we leave because we do not want her blood pressure to bottom out after we are already home. Hopefully this amount today does the trick and we are good to go tomorrow. We shall see.

Audra loves going for stroller rides all over the hospital. We are looking forward to our usual visit from her big sister, grandma and grandpa to get out of the room :)

Still Working Towards Home

Audra's tests yesterday all went well - echo, EKG and chest x-ray. Her cardio function all looks good. The unexpected news is that Audra's right diaphragm has regained function. Such good news.

Two things are now keeping us here. The first one is her feeds. Audra has been struggling to keep them down and is not gaining weight. We are working on this as well as getting her to take the bottle again. She wants little to do with it. We have to get her back to drinking fortified milk (we took her off to see if things clear up) and regularly keep it down.

The second thing -that is a new development- is her higher blood pressure. It has been borderline high and they are finally deciding to give her some medicine to lower it. They have to monitor her blood pressure frequently as she starts getting the medicine and for a few more days. So it looks like we will be here until Thursday or Friday at the earliest.

Audra has been generally happy other than when she is getting messed with. She is quick with a smile and loves going on stroller rides. Even after she pukes on you she will give you a huge smile that melts your heart. She isn't connected to any machines or anything so we are free to take her around. She may join her sister for a short time at the Game Day Experience, which is the playground our older daughter loves so much. We shall see how the afternoon goes.

General Care

We moved today to the general care floor. This is a step in the right direction. We are working on feeds with Audra as she is still struggling with taking her milk orally and throwing up a lot.

In the morning we have the tests that Audra needs to be cleared to go home. So we are on the right path. It feels good to finally be out of intensive care.