Joy

We have had a very good last day and a half. Maggie has been doing exceptionally well. Yesterday morning at 4:00am, they turned off all of Maggie's narcotics (sedation drugs). Around 8:00am, the drugs had worn off enough for her to know that she had a tube in her throat and her natural reaction was to gag/vomit. Because she began to vomit, they decided not to wait until after rounds, but instead to do it during rounds. Thus the reason for the earlier extubation-- she was ready.

Once they extubated Maggie, they put her on a high-flow air canula around her nose. She was given high settings for this-- 10 liters of oxygen at 100%. Throughout the day they continued to lower her settings as her oxygen saturation was at 100%. As Andy said yesterday, she continued to vomit after extubation, their thought being her throat had been irritated by the tube sitting there for so long. Once she was given Zofran (anti-nausea drug) she settled down and we haven't had problems since.

As far as her lung health is concerned, they transferred Maggie from the high-flow to the regular oxygen this afternoon. This morning they were able to wean her down to 5 liters at 50% on the high-flow. When they changed her to the regular oxygen this afternoon, they moved her to 3 liters. Just a note, that before Maggie was intubated, she was on 5 liters in Dayton. In the last 3 hours or so they have been able to wean Maggie's liters to 1. One! It is amazing to us that she seems to be requiring such little assistance. And her saturation is still between 98-100%. It is hard to believe that just 48 hours ago she was on a ventilator and now she is on 1 liter. We hope that Maggie continues to do so well with her lung functioning.

Maggie has been very weak and shaky. In some ways, it feels like we have a 30 pound newborn (versus the 10 pounder we had at birth). Her shakiness is due to her withdrawal from the heavy narcotics. She of course is very weak since she has been laying in bed the last 6 weeks. As we held her yesterday, it was very awkward as Maggie couldn't support herself at all and it seemed as though she couldn't get comfortable. We enjoyed holding our baby in our arms after not being able to do so for 6 weeks, but since those few moments, we have kept her in bed to recover.

Maggie's behavior has been so cute. She has picked up right from where she left off. The day she was intubated, Maggie was NPO (nothing by mouth) all day in preparation for her bronch. She asked for juice all day and we had to pretend to call the lunch ladies and ask for them (but they never showed up!). The day before she was extubated, she was quite awake, and the first thing she mouthed to me (she still couldn't talk) was "juice." She hadn't forgotten after 6 weeks.

As Maggie has become more aware in the last week, she has also been pointing to things and we couldn't figure out what she wanted. Yesterday, she finally was able to verbalize what she has been wanting. There was a water bottle on the windowsill that Maggie pointed out yesterday and said "wa-wa." I asked her how she thought we could get the water. Her response, "Andy." I guess she hasn't lost the habit of calling her daddy by his first name, as well as what he is best known for-- the gopher. She has called for him several times in the last day to do something for her. It's very endearing (hopefully Andy thinks so too).

Maggie's new favorite thing to do is to suck water from a sponge that they use to clean her teeth. She had been requesting for water from the time she was extubated and they didn't want her to have anything by mouth yesterday in case she needed to be re-intubated. The nurse allowed her a couple of sponge dips into the water and she sucked away. Today she has been given the okay for clear liquids and so we have allowed her to dip the sponge by herself (though shaky) and she will hold it in her mouth for quite awhile. I have heard of other children who have had an oral aversion after being intubated, but thankfully I think we will not have to worry about this.

So our last day and a half have consisted of keeping Maggie comfortable and entertaining her. She has watched many of her favorite movies and shows in the last day and the excitement that she shows is precious. Last night she commentated through all of Backyardigans. Though she is still very hoarse, she tries to use her voice and still experiments with it some.

We are so happy to have our baby girl back. She is such a joy. Andy said back when Maggie was first intubated and when we thought we had lost her, that we would appreciate her so much more after all of this (we had no idea it would be 6 weeks). I told him, there is no way we could appreciate her more than we already have. She is loved beyond belief from both her mommy and daddy. We thank God for our precious miracle.