Thursday, May 19, 2016


It's a good thing I like GBMC, because we sure spend a lot of time there. Three days in a row this week, no less than two and a half hours each. We're also extremely grateful for the folks I work with who have provided meals to us this week. I haven't had to cook all week, and with as tired as I've been and as much as we've had going on, it's been an incredibly huge (and yummy!) help. 

Yesterday was our appointment with the cleft surgeon. We liked him; he didn't tell us a whole lot we didn't know already, but he also didn't sugarcoat things, which I appreciated. He couldn't tell us anything more about the cleft; he said that it's too difficult to tell for certain how severe it is until the baby is born. Sometimes they are smaller than they appear; sometimes they are larger. He also showed us some pictures of kids he has operated on, which helps give us a better idea of what to expect.

The speech pathologist will visit us in the hospital soon after the baby is born to do a feeding assessment and help us figure out which bottle will be best (though if the baby has only a cleft lip, we may not need to do anything differently for feeding). The surgeon will also visit us before we're discharged, and we'll have our first in-office visit within a week of the baby's birth. We can expect the lip surgery to take place when the baby is three months old, and baby will spend one night in the hospital afterwards. If the palate is affected, the surgery to repair it is usually around the baby's first birthday.

While there, we also got to talk to the coordinator of the cleft team, who I had spoken with on the phone when I first called for the appointments and who told me she is also a breast cancer survivor--10 years this fall! She said they have an FU Cancer party each year on the anniversary of her surgery. I like her.

Today was the first non-stress test for the baby. I wasn't sure what to expect going into it, so I was a little anxious. It turned out to be for nothing. I laid on an uncomfortable, paper-covered exam bed, pulled up my shirt, had a couple of sensors attached to my belly, and sat there for just under an hour while the sensors recorded baby's heart rate and movements. They take the baby's baseline heart rate and then want to see the baby's heart rate accelerate with movement. The baby was moving quite a bit (thanks to my late lunch, eaten on the way to the hospital), and actually kicked hard enough to dislodge the sensor a couple of times. I ended up having to push it down to hold it in place to get the last recording they needed. It was pretty cool to hear the kicks and punches at the same time I felt them.

We then walked across the hospital to the OB's office, where we had a quick ultrasound and got to watch baby practice breathing (super cool!) and more movements. My appointment with the doctor was pretty quick; he did tell us it would be fine to travel an hour and a half away to Chestertown at the beginning of June for Kevin's college reunion weekend (where he's planning to perform in the drama alumni improv show) but that he wouldn't recommend a visit to the cottage, five hours away in rural Pennsylvania, over Memorial Day weekend. I'd suspected as much.

Tomorrow is Taxol Day Two and my first genetics appointment. I'm not quite sure what to expect for that appointment either, besides having blood drawn and then waiting three-ish weeks to find out if I have any of the genetic markers which may impact surgery decisions.

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