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!

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!

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 :)