So we've got time. But we did break out our book of Hebrew names to start considering possibilities. Painfully, many name options seemed completely inappropriate, because it seems like 90 percent of Hebrew girls names basically translates to "Joy" which may not accurately describe our current emotions. Most of the rest of the 10 percent seem like synonyms for livestock or produce (ex. Eglah, meaning - and I kid you not - "heifer").
The three that perhaps rang true were: Anina, meaning "Answer my prayer" although I'd have a rough time articulating what I was praying for; Kinnor, which is sort of a translation for "Harp" and is traditionally a male name, perhaps fitting in our unique situation; and Miryam, which not only is a beautiful name we both like, but also has a double meaning of "sea of sorrows" and "wished for child," which eerily echoes some of our feelings about our poor little bean.
It was primarily an uneventful day at the NICU, which meant some time just enjoying Harper's company. Giving her kisses and hoping she wouldn't constantly de-sat while cuddling. She is finally free of her ugly scalp IV and spent the day largely alert and awake, peeking at us more and more. It felt very much, many times, like she was looking at me, but that is likely just my overactive imagination combined with wishful thinking.
Harper also got to spend some time with her Grandma Lin.
Got some more test results back. In no surprise, Harper's androgen and anti-Mullerian hormore levels were very low. Girlie parts - check.
Our efforts to stop Harper's de-sat alarm by re-positioning her were a colossal failure. Her oxygen saturation dipped well into the 80's no matter if she was on her belly, her side, straight up, or snuggled skin to skin with mommy. And no matter what level of oxygen she was on. Yesterday, we tried a dose of Lasix to see if it would help, and her de-satting did decrease a little overnight, but nothing too dramatic.
On the other hand, her sucking ability is moving forward by leaps and bounds. Getting lots of good sucks on my finger, she really seems to crave the taste of breast milk when a pacifier or finger is dipped in it, and sucking seems to actually offer her some comfort when she's fussy. She also let me do her stretching exercises on her little club feet. I find myself rejoicing in these accomplishments swiftly followed by the weight of sadness that such hallmarks are only so exciting in a baby whose future is so up in the air. But I found myself cheering on her amazing strength - she can really hold her head up and has surprisingly strong upper body strength - and comparing her to Shea, who was able to lift his head from day one. Falling in love with my tiny little daughter, even as the burden of being her mom is starting to feel like a claustrophobic chamber I can't escape.
It is too soon to make any clear decisions about Harper's care, when we still are trying to understand what her prognosis really is. But I think my desire to get her out of the NICU and home with her family, come what may, is becoming stronger with every passing day.
Eight days in, there still has not been one without significant crying. I think Shea is starting to sense there's something going on, because he's been a little clingy and temper tantruming, as well as waking up at night, in a way that is not typical for him. Talking with a pediatric psychiatrist/child life specialist about how we talk to Shea about everything going on is on the to do list for this week. Ugh.
Had an enjoyable evening with family and friends, and talked about plans for the weekend - in which I'd like to plant my veggie garden and Lou wants to participate in a charity bike race - and now feel myself hyperventilating a little from the guilt of doing anything else while Harper is alone in the hospital (well, as along as one can be with the bazillions of people there always are roaming about the NICU...)
Hope you're sleeping well tonight, Harper Bean. We'll bring your brother to come visit you tomorrow.
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