As Lauren reported in her post on Thursday, we were overjoyed when Caili extubated herself and then got switched to CPAP. Seeing her on Thursday was awesome--it was so great to see her free of the big ventilator, and without the tube in her mouth. However, she didn't seem to be loving the CPAP. Lauren was convinced she seemed scared, and I'm inclined to trust her mother's intuition. The CPAP is a bit scary--it consists of a big mask that covered her whole nose, and because she's so small it was right against the corner of her eyes--it took her awhile before she was brave enough to open them again. And it is strapped to her head complete with a big (and not too attractive) head-gear. Anyway, despite seeming a little fearful, she was doing pretty well, and we were hopeful that she'd be able to remain on CPAP, our hope being that in a week or so they'd try progressing her to the next even more mild ventilation option.
On Friday morning, less than 36 hours after they put her on CPAP, they decided that she was doing so well she was ready for that next step, and they moved her to something called high flow nasal cannula, which is a small clear line with two nasal prongs. It's like what they frequently use on adults, except that they push a lot more air, and the air is humidified so as not to dry out her nose. This step forward was a total surprise, and obviously we were, and are, over the moon. She looks so much happier and better, and she's just doing great! We'll try to get new pictures up soon. We are blown away by her progress, and in truth, the doctors even seem to be surprised.
She worried us a bit last night with a higher than normal heart rate and some oxygen saturation (the level of oxygen in her blood) issues, but that was unsurprising given the incredible stress of her room, as it was a nurse short, and the babies all seemed to be having issues at once. The stress that can build in a NICU room is unlike anything I've ever experienced--it's hard to put into words--it takes on a liquid form, and begins to make me feel like I might drown in it. Lauren thinks Caili can sense the stress, and I think she's right--last night sure seems like proof. Fortunately, once Caili finally fell asleep, she had a great night and continued to do incredibly well today.
I got to hold her again this afternoon--and she slept on my chest for what seemed like hours. It was amazing. She's now gone nearly 3 days off the ventilator, and seems to be holding up very well. However, they tell us that babies as small as Cailin sometimes do well for up to a week and then simply run out of energy. After all, she wasn't meant to breathe on her own for another 9 weeks. We're hoping Caili has the strength to keep going, but regardless we're grateful for this respite from the pounding force of mechanical ventilation on her fragile little lungs, no matter how long it lasts.
The big thing that we now have to focus on is growth / weight gain. The stresses of the week caused her to drop back below 2 pounds as of Thursday night, but they weighed her this morning at almost exactly 2 pounds--so she's definitely back on the growing track! And it should be pointed out that she doesn't have all the ventilation tubes weighing her down anymore, which may account for some of the weight loss! Hopefully she'll stay healthy and keep getting bigger and stronger!
One final note--it's strange how the NICU becomes your family, and your heart breaks for your baby's neighbor's pain, and rejoices in their good news--these people that not so long ago were simply pregnant strangers, but are now sharing with you the horrific experience of watching your children fight for their lives, with no control and little ability to help them. One of Caili's neighbors in particular is at a critical stage, so, if you can add little Christopher to your prayers, we would appreciate it.
As always, thank you for your thoughts and prayers, for Caili and for Caili's roommates.
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