Sunny Days

       After watching her heart function through weekly echocardiograms & blood work, the Doctors wanted a cardiac catheterization so they could get a better idea of what Sunny's heart was up to. Both the squeeze & relaxation of  her heart were not as efficient as they once had been, and there isn't a clear indication as to why. The catheterization was able to give them numbers, and showed higher pressures. After taking the results to the Dr on service this week & the cardiac surgeon, they decided it best to start her on a medication that should help with the flexibility of her heart. This medication can mess with the rhythm and her blood pressure, so they only administer the drug in the CICU so they are able to keep a closer eye on her.  It feels somber, and like we're taking a step back. But I don't think it is. Her health is, and probably always will be, an ebb & flow. The doctors are just moving in step with her needs - not a step back i...

  Sunny is THREE MONTHS OLDDDD  (well, technically tomorrow...but STILL)!!!!!!!!!!!!!!!! She's already made so many friends over here in 2B. She's gone through so much in her life, and yet is still such a delight. She's got several nurses and a few nurse practitioners in the palm of her 6-fingered hand. One nurse stops in regularly to say when she's not tasked to Sunny for the day, another brought her a Care Bear PEZ dispenser because of the sunshine on its belly. As her parents, it's always so incredible seeing Sunny so well loved. This week they tried a different blood pressure medication. They eased into it and continue to slowly increase the dose while watching her kidney function because of her narrow renal arteries. So far so good, and their goal is to take her off some of the other BP meds she's currently on.  They're still not sure why the squeeze of her heart isn't as good as it was a month ago. It's not declining rapidly, but it's also ...

  Happy Valentines Day! Sunny got a warm bath that almost put her to sleep. Then she got a massage & workout with Physical Therapy that knocked her out completely! Sunny girl has been pretty stable lately. They're keeping an eye on her right ventricle as it showed in her echocardiogram that it wasn't expanding & contracting as much as it had been.  But all the blood work markers are indicating that her heart is trending in a good direction. We're wondering if it was a result of the funky breaths the old ventilator was giving her, but the Dr's aren't sure if that would do it.   This week, she's been working on getting off drugs! We're alllllllllmost at the end of it - they've gotten to the lowest dose, so now they start spreading the doses out further & further apart. She's not ignorant to the fact that they're giving her less. Withdrawal to babies looks like puking/gaging, hiccups, sneezing, yawning & general fussiness. All of whi...

       This week was a little rough for Miss Sunny Buns:/  Monday, she grew noticeably more irritable at times and her breathing & blood oxygen saturation were not as they recently have been. The team was quick to run tests & do imaging to check off any of the scarier possibilities - all came back unalarming. They tested some mucous to check if she was coming down with something, but that also came back normal. One nurse mentioned that it's possible she could still be coming down with something, but they just tested too early. It was also suggested that it could just be her sensitivity to the morphine wean? But either way, they're continuing to keep a close eye on her.  Tuesday, she was just very very off.  Luckily, we had a nurse who'd had Sunny last week and was able to see the difference alongside us.  Sunny's stats were just off, she was irritable/wouldn't settle for long, & her breathing was just different. Tuesday late afternoon,...