news

Iris had a pulmonary check up at the end of July. The visit itself was pretty uneventful, so really, no news is good news. Iris is making progress on coming off the oxygen. She is down to 1/8LPM and is frequently pulling the cannula out of her nose. This is a good sign, because it means she doesn't want the extra help. She puts the cannula back in her nose when she needs it. Last night I asked her to put it in her nose, and she did it pretty easily. She is also at the stage where she is shaking her head, "no," so if she doesn't want it in her nose, she makes it very clear by squirming, flailing her hands, and shaking her head.

As far as her growth goes, it's looking great. The nurse didn't do her weight quite right -- she forgot to account for the diaper Iris was wearing. But basically, everything is looking really good.  Notice that on the length-for-age chart (the last chart) that she is basically off the curve. She is very tall. (I can access these charts from her hospital chart online. They don't make all the doctors' notes available to us online, but the charts are fun to look at.)

Going back to the hospital for our clinic visits is always a surreal experience, and I expect it will be forever. Every time I see the logo and pull in to the parking lot, I have little flashbacks to the weeks we spent in the hospital.

It's a nice logo, right? Playful, hopeful. It has to be because after a (short) while in the hospital, you realize how much pain and sadness lives there, too. Thankfully, we have a lot of hope and the pain and sadness lessens with each day. Even so, it would be very easy to fall into self-pity, especially when worn down due to sleeplessness or other stressors.

The second bit of news I have to share is: I got a job. A full-time job. I'm very excited about the basics of the job, and also about the people I'll be working with. They are letting me start part-time while I get care situated for Iris. Our nanny, who is wonderful, isn't available full-time, and she just finished massage therapy school, so wants to pursue that.

The last several days have been stressful because I have been screening potential nannies and have been looking at in-home childcare options, as well as day care centers. A bit of advice to everyone: Google yourself every once in a while -- it's amazing what I've been able to find out about some of these possible nannies based on their names, location, and sometimes a phone number. It's very easy to decide which ones I don't want to hire after I see what they're talking about on Twitter, for example. My current nanny posts things about accepting yourself for who you are, being helpful to others, and generally inspiring things. She's great.

steroid burst

We met with cardiology and pulmonology today in a 5-hour visit to the hospital clinic. They did an echo, an EKG, and an x-ray. The conclusions: she has very mild septal flattening while off oxygen so she will stay on the oxygen and continue the sildenafil. We can take her of the Lasix. Her oxygen saturation levels are low so she is now up to 1/2 liter instead of a 1/4 liter. The x-ray showed that she had hyper-inflated lungs so she is starting on steroids to address the inflammation. She will have 3-5 days of a ‘steroid burst’ and then we will continue to give her inhaled steroids for 3-6 months. Evan and I are both unhappy about this, particularly Evan. I am hopeful that we can keep this shorter rather than longer but it is important to protect her lungs as much as possible.

She gained weight again - averaging 25 grams/day for the 18 days between clinic visits. She is now 4.95 kg (10.9 lbs). We think of her as a normal-sized baby but she is really still quite skinny.