Wednesday, November 10, 2010

The Next Step

It has been a week since my last post and quite a bit has happened. Aurelia is back in the Cardiac Care Unit (out of ICU), which is great. I was initially nervous about her move back, but she has handled it really well. In fact, I was thrilled that one of our favorite nurses, Laura (who was with Aurelia the day she got moved back to the CICU) was with us again. She was with us for a few days, so that helped to make the transition back to the CCU much easier.

The other good thing about the move back to the CCU is that we are now in a private room. This makes bringing Madison for visits a lot easier. I can close the door to the room and let her play and visit with her sister, without disturbing anyone. We are up on the 6th floor (which is where we've been all along) and we finally have a great view. Maddie loves to look out the window and point out the buses and trucks as they go by on the streets below. She also enjoys sitting in her sister's crib while Aurelia is in the crib too. Usually A is in a bouncy seat, positioned in the crib too. Madison's latest joy is to unswaddle Aurelia and ask whether or not she pooped. It sounds hilarious to hear Maddie say in her high pitched and french-accent sounding voice "she poop?" Maddie insists on giving Aurelia kisses and likes to show her the various teddy bears and other animals in Aurelia's crib. It is very sweet that she can spend some time with her sister and that she seems to be so loving toward her.

Aurelia is back on food and while this is a very slow process, it has been going relatively well. Because she was without food for a full week, they started her back on 3 ml an hour for about 2 1/2 days. After that time passed, they bump up her volumes by 1.5 mls an hour every 12 hours. At one point, they had to stop her feeds because Aurelia was retching a bit. They stopped them for a few hours and then started them back up again and she seems to be tolerating them well. As of 5:30 this morning, she was up to 13 mls an hour. The ultimate goal is 23, so we are getting closer. However, at 5:30, they had to stop her feeds because she is going for another surgery this afternoon.

Yes, you read that right. Another surgery. On Monday night, they were changing the dressing on her PICC line (which has to be done very carefully). There are 2 lines, or lumens, that go into the PICC. When she was on her NEC watch, they were using one of the lumens to deliver her antibiotics. The other line is to deliver her nutritional supplementation. She is no longer getting antibiotics, so she she really only needs one line to get her nutritional supplementation (which she needs until she is back up to her 23 mls an hour of breast milk). Because the second line is not being used, the nurses have to flush the line every 12 hours, just to make sure that it doesn't get clogged, which could be an infection risk. To make a long and frustrating story short, when they were changing the dressing, one of the lines got twisted and is no longer flushable. This is definitely an infection risk. So, she has to go for another surgery and get the PICC line rewired.

My biggest fear right now is that she will have another bad reaction when she comes off of the anesthesia. They are planning on giving her a very mild sedation through her IV, but there is always the possibility that she will need to be intubated. All of her breathing difficulties (and the tracheamalcia) came to fruition just after the last PICC surgery and I'm worried that she'll have trouble again. Once again, I have to have patience and wait and see.

This is the first surgery that Charley won't be here for and I know that it is killing him. In the grand scheme of things, this is a minor surgery. However, I keep thinking about a quote from another heart blog that I read (Adventures of a Funky Heart) where the writer said that the truth of the matter is that for a heart kid, there is no such thing as a minor surgery. Aurelia is such a strong kid and such a fighter. Right now she's pretty upset (wouldn't you be upset if you were just getting back to eating and then they stopped it again!?), so hopefully she will be right back up to her 13 mls after the surgery, which is scheduled for 2:30 today.

The plan for Aurelia, after this PICC business is resolved, is to continue advancing her feeds until she's back up to 23 ml. Once she is there, she will be sent for a milk scan to determine whether or not she has reflux. Then we will decide what type of feeding tube she'll be sent home with (which is exactly what we were planning on doing when the NEC scare occurred, almost 2 weeks ago).

On the home front, it has been 8 weeks since I have been home. Madison too. We miss home, Charley, the cats, and normalcy. We are making the best of it that we can and the Ronald McDonald House has been wonderful. In fact, I spoke this morning to a group of potential donors for the house about our story and what the house has meant to us. I hope that I was able to help them a bit because they have been so wonderful for us.

I'll try to send a quick update once Aurelia comes out of surgery this afternoon. For now, extra prayers and loving thoughts are greatly appreciated!



  1. I was a volunteer for my local RMH for many years. As a house parent there, I never felt anything was "minor," because to a parent it never is. I understand that.
    Charley will be there for the surgery in mind & spirit.
    I wish I could send something more than good wishes & heartfelt vibes..... ~Mary

    (I used to read Charley's blog, Courage)

  2. Ilene in New Milford - prayers and good thoughts are coming your way. Aurelia is such a fighter and it is so sweet to hear about the connection Madison has made with her sister. Stay strong. Love you all, Ilene and Gary