Thursday, July 12, 2012

Day 16: Not only good... Great!

Today was a great day for Lily! Her best day yet :) She was set at the lowest pressure settings on the jet ventilator, so they took her tracheal ventilator out and moved her to the CPAP- and she's tolerating. Seeing her breathe on her own was an amazing feeling... they're miracle breaths.

Still, we have to remind ourselves it's just one day. Tomorrow is another day, and we're still on the NICU roller coaster. There are ups, there are downs - as long as the good/bad day ratio is higher than 1, we're moving forward, and Lily is winning her battle.

Right before they extubated her, the physician told gave us a straightforward talk: this is a step, but it's just a step. It doesn't always work out, and some babies need to get intubated again... "don't be surprised if you walk in and see her back on the ventilator."

They call it "failing the CPAP". Some babies fail within a few hours, some a few days, others after a few weeks. They just get tired of breathing. That said, the doctor also said she's seen "a lot" of babies stay on the CPAP until they can breathe without any assistance. The CPAP mask looks like a sleep apnea mask, fits right over the nose.

On the jet ventilator this afternoon, lily was stat'ing really well in the 90s (no dips) with the ventilator set at 30% oxygen and a PEEP of about 15 cmH2O; PEEP is a measure of the force of the air being pushed into her lungs. The PEEP on the CPAP is much lower (~5), because she is doing the rest of her breathing on her own.

When they switched her to CPAP around 5pm, they initially had to dial up her oxygen to 75-80% to keep her blood oxygen in the 80s... they called it the transition period. We saw a few dips to the 70s, but nothing too bad. I visited her at 8pm, and she was stat'ing well (90s) with about 60% oxygen. We just called to check in (11pm), and she's still tolerating it nicely without de-stat's!

So we have a lot to be positive about today. Seeing Lily breathe on her own gave me a sense of joy that I haven't had in what feels like a lifetime... baby's steps, but this is a great one. Sara's wound is healing, slowly but surely; Addie is still a crazy toddler, so if that's any indication of her mood I'm pretty sure she's happy as ever :)

The blog passed 10,000 views today... amazing! Your prayers and positive vibes are working... each one is a miracle breath! Thank you all for the support and for following Lily's story. I'll be loading up some pictures tomorrow, so check back!

3 comments:

  1. Hallelujah!! That is soooo fantastic. She is one strong little lady. Miracles happen all the time.

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  2. Congrats on your little one. We had twins on 6/26 at 27 weeks that were 1lb11oz and 13.25 inches long. One is on the jet for lung issues, and we have already had three surgeries. Look into SSI abd medicare, that will help with whatever bills and treatments your insurance won't cover. Your hospital social worker should have the info. Best wishes.

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  3. Go, Go Lilly!!! Praying everyday that all steps will be forward steps for Lily! ~Janis

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