Lydia got her first taste of real food this week. Granted it did not travel to her tummy in my dream fashion, but she seemed to enjoy a few tastes of frozen sweet potatoes and a couple licks of a watermelon jolly rancher wrapped in gauze given by her occupational therapist before it came out her spit fistula. I’m sure she’ll have the only baby book that lists jolly rancher as a first food.
A couple pics of our little sweet potato lips in her retro goose dress circa 1980 (this fall’s latest fashion trend) After Lydia’s fairly easy week with (fortunately) very little excitement, she had to go and give us a scare this weekend. She had been running fevers starting Saturday, on Sunday she had some arrhythmia issues which were attributed to a high potassium and then that night became very listless and had an all round bad night. We got a 4AM call early today to come in which is never a comforting call as the hospital never just calls to tell you how cute your child is in the middle of the night. I showed up about 4:30 and Lydia had settled out after giving everyone a blood pressure scare and just looking pretty awful and seeming to be unresponsive. She got placed back on an epinephrine drip and more IV antibiotics. On the positive side, she is responding well to the antibiotics and they have almost weaned the epi off tonight. After rubbing her head for about 30 minutes, she woke up, gave a grin and started sucking on her mouth sponges. Her doctor stared at her with his jaw open and said how when they called us she didn’t even flinch when he put in another IV line. I tried to tell her that I was more than happy to come visit and give her water sponges, but I’d really appreciate if she could not request it so urgently in the wee hours of the morning. And I tried to further convince her if she’d just be willing to move in with us, it would be much easier for me to stumble into her room to give her said water sponges just anytime. We’re not sure where the source of infection is, but my suspicion still lies with the esophagus as it seems to be our root of all evil. We had started feeding her into her stomach last week instead of solely into her jejunum but had to stop due to the formula leaking around the site and now I’m wondering if she doesn’t have a tiny leak in the lower end of her esophagus that could be causing the current problems. They may do an esophagram later this week to see, but in the meantime, we just rejoice that tonight is much, much better than last night and are praying for a more calm and stable week ahead. I think Lydia her us saying the D word (discharge) and wanted to make sure everyone was still paying close attention to her.
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