Four Little Ladybugs

Ava had a good day while we were with her. She seemed fairly comfortable and looked OK, however her heart rate was really high. That usually has to do with her positioning, or temperature. She got a massage and repositioned and seemed to settle down a bit. We were happy about that. We really wanted to hold her and didn't want to if her heart rate was so high. We were only able to stay for part of the day (9:30am-4:00pm) today. So Allan was the one who got a turn holding our sweetie. (OK, she is sweet, but is still a little salty).

It's been rough around our house for the last 24 hours. Alexa is having more issues with her asthma than normal. She was up last night from 1:30am-5:00am. This wouldn't have been too bad except I was up making "Ava Bracelets" and lost track of time. I just crawled into bed at 1am. At some point Elaina woke up and then Emily did too.

Despite exhausting all the tricks in our "Asthma Arsenal" Alexa did not respond like she usually does. Our pediatrician came through and called in a prescription for an oral steroid. This seemed to do the trick. We are just so grateful for that. Tonight was birthday party for a special friend at an inflatable party place. They so needed to do that. While I was up holding Alexa on the couch last night I just kept asking God to allow her to go.

I spent the night wondering if we were going to walk into a baby who has taken a turn for the worse. I was worried about Alexa and leaving her in that condition, knowing an ER visit was soon to be on deck if something didn't give. I was so concerned, as we have successfully managed all asthma flare ups and stayed out of the ER. I could sense that she was scared of the prospect of needing the care of a physician and Emily was so worried about her sister.

The steroid did the trick and off the the party they went under Daddy's watchful eye. They were given a strict warning that Daddy may make them take breaks and lay low for a bit. The report is that no one so much as coughed. I am using plural here as Emily was beginning to show signs of starting down the same path.

I stayed home with Elaina and had time with just her. She now has a fever and a runny nose, so I just held her and she watched her favorite shows in my lap. We even shared dinner. During her bath I made a duck noise (I'm multi-talented). She told me that her pediatrician makes that sound. I don't remember the last time she saw him, it's been a couple months, but he makes that sound when he looks in her ears. She then told me that he takes good care of her, "because I don't like those tubes in my nose." I asked her who has tubes, she said, "Ava". I asked her if they hurt her or if she is managing OK. She said, "She managing OK." I then asked her if they helped her or hurt her. She told me they helped her. Later I asked her if her ears were broken. She told me no. I then told her that she is big and strong.

So we tucked three borderline not feeling well little bugs into bed tonight. Two were coughing, but have stopped. I hope I get to sleep tonight, I am so emotionally drained and now physically tired as well. I am always wondering if today will be the second saddest day of my life and what choices we are faced with making. Today, I was fully prepared for it to be "the" day. Ava decided to peer open one eye (for the first time in 2 days) and respond to us with smiles and pleasant faces.

I struggle with how to bridge the ever growing gap between the medical team and us. Today not one physician came to chat with us. We are invited to participate in morning rounds, something that we have never wanted to do, but I am thinking that it is now necessary. I do not like the notion that they are thinking all that is happening to Ava is "progression of the disease" and that they are just waiting for us to give "the word". We know that this is progression of HER disease and we would like someone to think about ways that will help her be more comfortable.

We feel like God is asking us to "wait". So we are. We don't know why, but we do. I am trying to stay in each moment and not think down the road. When I look down the road I find I am focusing on my agenda and not relying on God's Holy agenda for us.