Pee like the Wind!

Nettie Maude needs to pee, and we need everyone who reads this to do a little rain dance to help make the floodgates open. Overall, she's recovering well, and though she's holding a lot of fluid, the nurses and doctors assure us this is within the range of "normal" for kids following heart surgery. But still, they really want her to pee; that's her only job for the night.

This photo is from yesterday, Nettie actually has a few less tubes and wires in her at this point, but we wanted everyone to have a visual that explains why we were too exhausted to post an update yesterday. Today has been a good day, both Julie and I are in good spirits, but yesterday was pretty hard, regardless of doctors' assurances that all was fine. Fortunately, we've been alternating in our freak-outs, so one of us has always been there to comfort the other.

This other photo is of all the equipment in her room. Nettie is hooked up to a breathing machine, though by now she is initiating most of her own breaths (except when they have to give her muscle relaxants to take tubes out, etc). Yesterday she was also hooked up to an external pacemaker, though she's been off of that for most of the day today. Other good news is that they've just now started to feed her the breast milk Julie has been pumping since her birth. The hospitals have been amazing about this, they've saved Julie's nutrient-rich pre-milk (colostrum) and milk, and will feed it to Nettie in the order it was produced so she gets all the good stuff in the sequence mother nature intended.

There were four scary things about yesterday: the geneticist, the pacemaker, the breathing machine, and the insurance. The geneticist - post-surgery Nettie has been holding a lot of fluid, and the doctor's noticed that much of it is in the back of her neck. That can be a sign for some genetic disorders, but usually it is accompanied by other signs that Nettie doesn't have. The doctors said on a scale of 1 to 10, 10 being the most worried, they were somewhere between a 0 and 1. Since there are genetic specialist on staff, however, they called one over. This pushed Julie over the edge a bit. We had been dealing with these issues since the pregnancy was first red-flagged back in the spring. Our doctor in DC performed an CVS; the test determined that Nettie did not have down-syndrome or other major genetic disorders. After the stress of those tests, we declined a "micro-array", a test that looks for minor genetic disorders. Our dr in DC described the CVS as examining the structure of the genetic skyscraper, and the micro-array as looking for missing individual floors (her analogy, not mine). We had to wait until this morning to meet with the genetic specialist here in Boston, and while she did order a micro-array (which takes a few weeks for results), she said she really wasn't worried about Nettie. Her heart condition appears to be an isolated abnormality, which means that if we had other children, they would likely not have a heart condition. That made us both feel better.

In regards to the pacemaker and the breathing machine, they both just overwhelmed me yesterday. Periodically the doctors would take the pacemaker off, and the "electricity" in her heart wasn't sending the right signals. They told me this usually corrected itself, as it has by today, but for some reason it just got to me. Nettie would have been fine even if she did have had to have a pacemaker for the rest of her life (a possibility we knew about before the surgery), but still, dad can be a delicate flower. And I don't know what it was about the breathing machine, perhaps it was baggage from my childhood asthma, but it got to me too. Anyway, no pacemaker now, and they're weaning her off the breathing machine fine.

As far as the insurance, if any of you reading this are even remotely considering voting for Romney, please call me, and let's have a long conversation. WHY DON'T WE HAVE A SINGLE PAYER-SYSTEM! To add insult to injury, Julie and I have had to spend hours trying to decipher the would be greek legalese of our insurance policies to figure out which of our plans will be best for Nettie. We talked with a financial counselor, we've been on the phone with both plans; you think you understand something, then someone tells you the complete opposite. You just want to poke your eyes out. And then you hear some damn Canadian talk about how they just have to walk into a hospital and walk out. Now, I know, we're at the best hospital for childhood cardiac surgery in the world, and it's in the U.S. system, and I'm wrestling with this fact too. But contrary to what Adam Smith would have you believe, I don't think these doctors are doing it for the money. In fact, if you even ask them about insurance, they say, I have no idea about any of that stuff, go ask one of the counselors. Also, one of the cardio-baby stories on Boston's Children's website is from a mother from Iceland, and her government paid for her to fly to Boston and covered all the costs. I'm going off on tangets, apologies. End of the story is I think we finally figured it out, and Nettie should have decent insurance.

taken right before her 1week bday today

To end on a light note, Julie and I have been sleeping at home the past two nights. At home last night Julie ate an ice cream sandwich, which she had been really into during late pregnancy. Afterwards in bed, she said to me "you know, I think it was Nettie that really liked the ice cream sandwiches; that ice cream sandwich just didn't taste as good as they did while I was pregnant." Nettie, once you're home with us, and old enough to eat ice cream sandwiches, you can have as many ice cream sandwiches as you'd like.