Tag Archives: T21

The Thrill Ride that is the last few weeks of a Down syndrome pregnancy

I’ll be 36 weeks soon, and with my other pregnancies, that was about the time I started thinking of the baby as a more concrete than abstract concept, but still didn’t do much to prepare. What an eye-opener this pregnancy has been. For the last two weeks with this pregnancy, the medical routine has been drastically different. At 34 weeks, I started having weekly non stress tests (“NSTs”) at my OB’s office and biophysical profiles (“BPPs”) at my high risk OB’s office. Basically, I spend most of my week in a doctor’s office, trying hard not to fall asleep. It’s amazing how when you’re used to running around all day, if you change abruptly to sitting around all day you can’t seem to keep your eyes open. I feel like the resident octogenarian. The nurses are all, “So how many weeks are you-aaaaaand she’s asleep again.”

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Meeting with the Heart Surgeon/Visit to the CICU

Heyyyyyyyy. Long time no blog. Things have been more or less the same, other than me having a couple break-downs and finally acknowledging to myself that I’m going to have to get some help. Having 2-3 doctors’ appointments a week and having to constantly find care for the girls while I attend the doctors’ appointments proved to be too great a strain. Seeing doctors for this baby girl is starting to seem like a full time job! ┬áSo, finding and interviewing potential nannies it is.

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Pondering all these things in my heart

I’m trying to decide whether it would have been better to be oblivious about Regina’s diagnoses until her birth, or have it the way it played out and fret about everything for 19-ish weeks. I guess this way is better. It might be more overwhelming to have all this dropped on our heads like a ton of bricks on the day of her delivery. I don’t know.

I have responded to the overwhelming feelings of anxiety for her by researching everything I can and joining every group that I find. Which, on the surface, sounds constructive, right? Instead of sitting around worrying, I can get up and do something! But, it hasn’t really proved helpful in practice. Turns out, Down syndrome has such a ridiculously wide spectrum of outcomes, it is impossible to predict where she will fall. Some are born perfectly healthy and can go home immediately, some have mild health issues and need a little time in the NICU, some have several serious health issues and spend months in the NICU. Some are born late, some are premature, some are born right near the due date. There is a higher risk of stillbirth and miscarriage. Some breastfeed straight out of the womb with no problems, some need help figuring out how to breastfeed, some take months to figure out how to breastfeed, some can never breastfeed, some need feeding tubes. I guess you get the idea of why I’m tearing my hair out. How can I possibly prepare with pretty much everything being up in the air?!!

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