Friday, June 3, 2016

Cleft Team Visit and Taxol #4

I love GMBC, honest true I do. But I'm getting pretty tired of it. Four days this week, and the shortest (by far) visit was 40 minutes.

Tuesday: non-stress test and ultrasound

Wednesday: blood work for chemo (has to be done on Wednesdays)

Thursday: cleft team prenatal appointment, non-stress test, growth ultrasound, regular OB exam

Friday: chemo

I talked with my OB yesterday and the oncology nurse today about stopping work. As hard as I've tried, and as much as I'd like to finish out the school year, I've realized it just isn't feasible. Round 3 of Taxol was a lot harder on me than the previous rounds, and the effects are lingering longer and more noticeably each week. My blood sugar has been wacky several days this week, and starting off the day with low blood sugar leaves a hangover effect that tends to wipe me out even on a good day. This means I've been late getting in to work a few times, after waiting for it to stabilize and to feel safe driving. On top of that, I have leave early at least twice a week - I'm only there for four days as it is - and all those times when I'm feeling too puny to see a kid when I've scheduled them (which seems to happen at least twice a day), and it turns out I'm just not able to do my job effectively anymore.
My OB said, 'of course! I'm surprised you made it this far' when I asked about the possibility of going out on leave early. He suggested that I go through oncology though, since they often have to fight for benefits to start at 38 weeks, and I'm looking to start at 36. He also said that the cumulative effects from the chemo are what is making it so much more difficult for me to maintain any stamina, so I don't even feel guilty (not that I would...necessarily).

My oncology nurse today printed the forms for me (since I was super S-M-R-T and left the ones I'd had prepared in the back of my car, which we did not take to the hospital today) and sent them over to the person who completes them. I should have them back by Monday, and they're going to write me out effective Tuesday. I decided that would give me one more day to transition/prepare the rest of my clients, box up my office for the summer months, and wrap up any little items I have left. I'm considering asking my supervisor about working from home for a few more days, as he had a couple of projects I could work on that don't require seeing kids, but I'm not sure how that will play into the disability benefits or if it would unnecessarily complicate things.

The cleft team appointment was helpful. It gave us an idea of what to expect for our first appointment with Baby B, which will be in August at their next cleft team day, and we got our questions about feeding answered, as much as we could without knowing the severity of the cleft anyway.

The genetic counselor said that we'll meet with the genetics doctor at our first visit with baby and that she will do an exam looking for subtle markers that could be indicative of a chromosomal and/or genetic defect that may have caused the cleft. She'll also do a brief exam on both Kevin and me, since sometimes they can be seen inside the mouths of parents (interesting, huh?). Then she'll let us know whether she thinks genetic testing would be appropriate for us and we can decide what we want to do.

The speech/feeding pathologist told us about the types of bottles that they have found to work the best for cleft palate babies. Cleft lip only babies typically don't have trouble feeding, but cleft palate babies almost always do. There are two pathologists on the cleft team, and one of them will meet with us when the baby is born to help us figure out what we need. If the baby is born after her work hours, we'll see her once she gets in. We will finger feed (using a syringe) if needed until she is able to meet us.

The audiologist came in to explain the two hearing screenings that every baby born at the hospital receives before discharge and which our child will have as well. We will have more hearing screenings over time, especially if there's a cleft palate, since that can affect a child's hearing.

We asked to talk with the dietician as well, since we will have donated breast milk (thanks to two of my brother-in-law's incredibly generous cousins, Saunders and Elizabeth!) for somewhere around 5-6 weeks. She recommended feeding the breast milk exclusively for the first six weeks (or as long as we can), and she's going to look to see if there's any literature about what is best after that period if we continue to have some breast milk available to us.

I'm sure we will have an overload of information at our August appointment, so it was nice to see how the process will work and have a better idea of what to expect. Plus, as is always true at GBMC, everyone was excellent and friendly and above-and-beyond helpful.

Chemo today was uneventful; my labs were good, I got my egg salad sandwich from the excellent volunteer, Alan, and we were finished and headed home by 1:30, orange cream slush in hand (take that, low blood sugar! Don't worry. It was a small one, and I didn't drink it all.). Debbie and I passed on Phase 10 in lieu of cross stitching; she had a project she's trying to finish for the cross stitch shop where she works a couple of days a week, and she brought me a small (easy) project to work on as well. It's a little pillow you can hang on a door knob that says "Baby Sleeping" with a simple little flower design. It's only the second project I've worked on since meeting the Brotzmans, and it was on a linen fabric rather than the Aida I used before. It turns out linen is much more difficult than the larger and more even Aida, so I didn't get much done. Nonetheless, it was fun to be crafty again. I have done very little crafting since getting pregnant, since my hands and wrists are so cranky. I still want to make the baby a couple of things; I really should get on it.

Baby will be here in three weeks. THREE! Holy moly. I'm so excited. Also, it's time to go wash some baby clothes and linens so we can have them ready.

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