It Snot Getting Better

It was a long week and longer weekend, but AE held up like a trooper. We've moved to Zyrtec to Claritin and now have the Singulair, but the new combo still doesn't solve AE's problems. With two air purifiers and closing off the rooms to the dogs, nothing seems to be helping. What HAS been a savior is the deep suctioning machine. Like her father, she sleeps great at night when all the clogging fluids recede to the back of the sinuses. But once she's awake and moving, they come spilling down and they are so thick she can get rid of them on her own. She gets emptied first thing in the morning with the deep suctioning, and then salined all day. We have to add another deep suction 1-2 times each day, depending on how well she's doing. But by late afternoon, she seems to be getting through it. But there are times when she really struggles. I'm convinced that if we had a deep suctioning machine before, Amelia would not have been hospitalized in March. But allergies are unforeseeable.

The funny thing is, AE's main problems, her lungs and hypertension, aren't causing her difficulties right now. It's this darn mucus thing. If that would just go away, I can't tell you how happy AE would be (and how much more rest Xina and I would get). It truly has been an all day battle every day Xina has been fighting, and so we constantly have her on her pulsox monitor and are overly paranoid about the noises coming from her nose and chest. It just goes to show you that a common baby problem can send a preemie over the top.

She also ran a fever Saturday, so that didn't help matters. We actually had to go up on her flow to 1.5Lpm for a little while. But the rest of the time, when she is semi-clear, she stays at 3/4Lpms, and we have had her down to 1/2Lpms (but that was nixed when the fever disclosed itself). Her lungs are ready for the 1/2LPMs, but whatever allergy/nose/throat thing she has going on won't allow it yet.

Her therapies are coming along. Xina and therapist Amelia have Amelia drinking water - actually, she laps it up more than drinks, as she still doesn't like stuff to be poured into her mouth. Therapist Amelia also wants baby Amelia to have another swallow test done, even though the throat doctor didn't think it was necessary 2 weeks ago. The therapist thinks that something may be not right in her swallowing, and that's the reason AE remains clogged in her throat with mucus and chokes on certain things. So her esophagus may be clear, and the paralyzed vocal chord has been ruled out as a culprit, but something else may not be working right.

PT is going fine, AE is getting stronger, but PT Mike doesn't think AE will be crawling be Xmas, so that was a little disappointing to hear. Some of that may be on Xina and I for not doing PT exercises, I guess, but we try to incorporate (and by "we" I mean Xina) into her regular play and daily routine. I don't know.

Throughout it all - her clogginess, her fever, reflux that hit and the mucous realated barfing - Amelia remains the happiest girl I've ever seen... not that I've been around babies on any regular basis before. But she still has yet to throw a fit or get upset, she always wants to be involved, is always looking at the talkers and wants interaction. She hates the suctioning tube in her nose (and as a test, I tried it out on myself.. and I couldn't stand it - I got more upset about it than she did) but as soon as the tube is out of her nose, she starts smiling again like nothing ever happened. So either she's just happy by nature or she inherited her mother's (self admitted) bad short term memory. She's rolling well now, and she actually went from stomach to back to stomach yesterday for the first time. She loves 70's rap (Xina thought it would be funny to pull out some Sugar Hill gang and the like... and AE likes the beat.) And she's learned some moves that she repeats to make herself happy (like any other infant) - clacking two toys together, batting her feet on her drum, kisses (licks, actually) on mommy's cheek, and rolling off my tummy or the couch as Xina or I catch her.

We're still debating on a full time nurse. Now that we have the suction machine, Xina seems to be able to get AE working fine. But every once in a while it would be nice to have a second pair of hands or take a break... but certainly not for 20 or 40hrs a week. So we are still uncertain what the future plan will be on that front.

That's the update... I'm sure Xina will lots of cute pictures later.