still trying to figure things out

We thought we’d give you the latest before you head off for the holidays. We continue to try to guess what is going on with little Sophia. Our pulmonologist gave us permission to reduce her inhaler to once a day instead of twice (since we were nervous after reading it wasn’t approved for kids under 4 and could cause growth stunting, etc). Although he seemed to think the medicine was fine, he said we could still try to wean her off. It didn’t seem to make a difference for the first four or five nights, but then the next few nights her breathing became heavy and noisy. We didn’t immediately return to the second set of puffs because she’d had this noisy breathing after getting back from the hospital too and the doctor wasn’t concerned. Eventually, however, we decided it wasn’t temporary and we’d go back to the old schedule. Hopefully, that will start helping soon.

We also went back to her Danny sling (which keeps her upright on her inclined bed). We hadn’t used it since surgery since we didn’t want to irritate her incision. However, she started to get so squirmy that the blanket rolls weren’t holding her in place anymore, and she would slide down or turn sideways while she slept. The sling is much safer. She’s about ready to outgrow it (and is figuring out how to open up the velcro and “free” herself), so pretty soon we are going to have to come up with another strategy.

Thursday night I got up to change her, and she happened to have a messy diaper. She started coughing after I was done, so I grabbed a burp cloth in case she spit up (which she usually does). It was dark and I could barely see but I noticed that the cloth had dark spots on it and panicked for a minute that I had somehow used a poopy cloth to wipe her face! Sad to say, I was momentarily relieved to find it was just blood. However, that realization then led to panic that she’d just spit up blood! So, thankfully the Internet is open at 2AM, and we did a little research. The main page we found said that we didn’t need to go to ER or the doc, but it could be a sign of a ton of scary diseases. So, I waited until the clinic opened at 7:30 to see what the nurse thought, and all she could say was “It’s hard to say as complicated as Sophia is.” When I mentioned it could be connected to the elevated temp/low-grade fever she’s had now for 4 1/2 weeks, the nurse said: “Well, with infants, we usually like them to come in after having a fever for 24 hours.” I explained that we’d been in a few times, and they seemed to have checked for everything. So, she had the doctor call us. She wasn’t concerned, but since we have a weight check/thyroid lab draw scheduled for this afternoon, she said she’d listen to Sophia just to be certain. She said the most likely thing was that Sophia was coughing so hard she broke a blood vessel. We’ll also have to ask her about the fluorescent yellow substance that came out of her stomach tube that morning (much brighter than the bile or meds we occasionally see).

Last night had us guessing again when she woke up three different times wailing. We don’t know if they were night terrors (the first time she didn’t even seem to wake up) or whether it was just gas (there seemed to be some associated noise, and it stopped after we gave her “baby beano”). Hopefully, it was just a fluky thing; I’m not sure what a little baby would have nightmares about.

If all goes well today, Sophia will go to watch her Godsister Siobhan in a play before she heads off to the doctor. Then she’ll kick off the holiday festivities with the annual gathering at Aisling’s house on Sunday, and she’ll get a chance to start opening all the gifts that are piling up under the tree!

At the moment Sophia is mesmerized by her Papa’s hand movements while he does his morning Tai Chi (he has hands too!)


  1. Poor little moppet. šŸ™ Please keep us posted!