Respite

by Kayte

After the past few days, we really needed these past 24 hours of relative stability. I know we still have setbacks to come, but having a few good days in-between really helps to keep us going.

Max actually got a very good report today. He’s off his antibiotics and decreased on the fentanyl (pain reliever). They’re still giving him lasix (diuretic) to get the fluid out of his lungs and reduce his swelling, and they’re really happy with how much he’s peeing. Also in the output department, he had a huge poop earlier today – the nurse was so excited. They started feeding him at noon, 3ccs every 3 hours. While still not a real “food” amount it’s a big step forward – he hasn’t had breastmilk since before his stomach perforation. He’s up to 3lb 4oz (!) and if he handles the food well will hopefully continue to grow in leaps and bounds. His ventilator settings were way down and he was breathing above the vent, so one of the next big steps will be getting him on the next machine down.

Lola hasn’t changed since last night, which for her is relative good news. She’s still a very sick baby, but at least her vitals aren’t bouncing off the walls. It’s so nice to sit with her without the beeping of the machines. She was still on dopamine for her blood pressure and her billirubin levels were up so back under the disco light. They’re giving her quite a bit of fentanyl so she was super sedated when we were there, but even if drug-induced it’s nice to see her relaxed and calm. The initial markers from the brain fluid draw don’t show any immediate sign of infection so we’re hoping for the best there – it will take a few days to grow the actual cultures to know for sure. If she stays as-is the doctor said we may be looking at a few weeks of just watching and waiting before they make their next move with the reservoir. Right now they’re just hoping she stays stable and gets stronger.

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3 Responses to “Respite”

  1. Grandma Beth says:

    These welcome and sorely needed lulls will change, hopefully soon, from the calm-before-the-storm to the start of smooth sailing. How wonderful that will be! In the meantime, enjoy the lulls, and know that millions are praying and sending positive vibes. Love you so much.

  2. Marco R says:

    Hello Kayte

    i cant not help to get emotional when i see the babys ( maybe because i am a twin also)
    i just wanna tell you to be strong and be positive and with Jehovas (God) help the babys are going to keep getting better and Healthy !!!! you and the babys are always in our prayers …

  3. Helen S says:

    Wow, Max is growing well! And Lola will soon be catching up with her brother – here’s to more stable days and she’ll get there. Hugs to you, Brody and very tiny hugs for the twins.

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