One week and counting!

We had our follow up at Children's Hospital today, and so far we have successfully kept Grace healthy for one week! Here's to many more.

So today was a busy day, and quite frankly one we were nervous about for Grace, with promises of more pokes and prods along with results of how her heart was holding up. The day started out with a consult with lactation regarding Grace's nutritional needs. It turns out your prayers are doing the trick (no surprise) as Grace is gaining an appropriate amount of weight and can continue feeding without us having to weigh her before and after each feed and without me having to pump after each feed. This may seem small, but it was the breast news for me!!

Our next appointment was at the ENT, as a follow up to the hearing test Grace had while she was hospitalized. This was not as much fun for Grace. She quite enjoyed the first appointment, during which her primary job was to eat. This appointment required her to be put in a papoose, which is a euphemism for a straight jacket falsely advertised with a picture of a smiling baby:

However, the actual use of it results in this type of baby:

The purpose of this was purely to keep her from wiggling too much so that the doctor could look in her ears to determine if she could see fluid. As you can tell, Grace hated it, but it was finished before she could get too worked up. It turns out she does have fluid in her ears, and will require surgery in a month or two to place tubes in her ears to help remove the fluid. This will likely be an outpatient procedure, but will require anesthesia, so we'll have to do the surgery at CHOP, where they have a cardiac anesthesia team, who will be familiar with Grace's case. We'll have to do a follow up hearing test where hopefully we'll hear that Grace can hear, and no longer has excuses to ignore us when we're telling her it's bedtime.

But the best news was saved for our final appointment...with the cardiologist. We learned that Grace's heart is running better than ever, and that the mitral valve leak is even less than when we left the hospital last week!  The doctor said "Grace should be at the top of her game right now." We could hear that sentence a few more hundred times. But before Grace could leave, for old times sake, let's hook her up one more time to the EKG machine.

The cardiologist says the rhythm of her heart looks good for someone who had the kind of surgery she had. We'll take that.  He also reduced her medicines, so we're already down from 13 doses/day to 6.  He was quickly becoming our favorite person.  Finally, he said we didn't have to do a blood draw, which is what we had been dreading since the phlebotomy showdown on Friday.  We were so glad not to have to put the Gracer through that again.  

As for Grace's sleep strike, it didn't take long for her to find that the comforting arms of her Daddy were just what she needed. As you can see, Daddy was completely modest about this.  

A successful albeit long day comes to a close in Graceland.