Hello again!

I have not posted in a while, and have heard several requests for an update. Regardless of what you might think I actually do have the time to post, however I have not had the time to process all the changes we have had to undergo as a family. When Anya was in the NICU that was the only focus, and I had a lot of time to think. This is very important, because without adequate thinking/processing time this blog would quickly turn into a run on sentence of expletives, and that is not really appropriate. I have missed writing though and do want everyone to know how we have been doing. Everyone has been so wonderful!

Routine care with Anya hasn’t been too bad actually. She gets fed every three hours and whenever she is open to it I work with her on the bottle. No changes on this really because we have not seen OT or speech here yet. I was worried that Anya would not sleep through the night but that was needless; she sleeps a lot more than I expected. I am guessing she needs more sleep because her small lungs use so much energy to oxygenate her body. We have a continuous feeding pump; it feels like a bit of a cheat. From around midnight to seven AM we set the pump to give her the feedings for that time frame continuously.

Both her pediatrician and the clinic visit went well, all involved were very happy with her development other than weakness in her neck and arms, etc. She is gaining weight well. She is not to be out in large crowds, like church for at least a few months. We will have to screen any visitors for illness until she gets stronger.

Ever since we have been home there has been a comedy of errors. The first weekend was what it was, afterward we felt like we had gotten into a rhythm. Then my back went out, so bad that I couldn’t pick Anya up without extreme pain. Adam stayed home a day and my in-laws helped a lot to get Arwen to school and help me get Anya to her appointments. As soon as that was improving Arwen came down with a nasty cold. We put Anya on a kind of home-style reverse isolation where we kept her in her room and made Arwen stay out. As soon as Typhoid Arwen was better, Adam had to go out of town on business, only gone one night but it was still stressful. He came back tonight, and comparing notes we both feel like we caught Arwen’s cold. Lovely.

Last night, or early this morning, however you look at it was a good example of the insanity. Anya woke up as she often does; usually she cries for a while, passes some gas and falls back to sleep after a lot of rocking. For some reason none of that was working this time.  She seemed to have a lot of junk in the back of her throat that was making her cough, and that really pissed her off.

Children’s ordered us a pulse oximeter to check her oxygen, so I set it up to see how she was doing. At first she was doing great despite throwing a wicked fit, and then she started to drop. I turned up her oxygen to help her recover but it just wasn’t happening. I was trying to use some saline drops in her nose to help that gunk loosen up; but nothing irritates a baby more than putting things up her nose.

Now before we left Dr. Kays had talked about Anya’s anatomy, and how when she cries and bears down it causes less blood flow to her lungs, or something like that. So it was to be expected that she would have occasions where things like this would happen. At five AM, bleary eyed and alone, I forgot this. I had been worried about Anya getting a cold so that is what I jumped to: “She is sick! I am going to have to take her to the ER! Didn’t have even two weeks without being rehospitalized, dammit!” Finally she did settle down a bit, and I went to get a drink and breathe a little. When I came back her sats were better and she looked at me and gave one whiney cry, like “Not you again.”

Well, the feeling was mutual at that point. So I went to bed and left her monitor on. Our house is small and her crib to my bed isn’t even five steps away, so I could hear if anything was wrong, the monitor is set to alarm if she drops too low. I planned on seeing how the next several hours went before deciding if I needed to call one of her doctors. A few hours later she continued to sleep peacefully, and I was able to turn her oxygen down to her baseline with her sats staying good. A little later she woke up and grinned at me like nothing had happened, and has been fine ever since. Troublemaker!

So that is a taste of life at the Eaton household now. I don’t want anyone to worry, this is what it is, and I have confidence that we can see her through this. I just need to write myself notes reminding me of this for five AM freak outs.