Power outage and more nursing gaps

After having really solid power we had another outage this morning. I guess we should be lucky we've only had two extended outages since Sofia has been back home. Luckily with her on the HME/mist collar all day the impact is less but it is still an extra issue to deal with.

And we're having more nursing gaps. We had to cover Thanksgiving night and the night after (as well as a night earlier that week) and it looks like we may be on again tonight and mon night next week.

I've already complained to the nursing company that they aren't doing their job effectively. Things definitely need to improve.

Happy Thanksgiving

We had a great Thanksgiving weekend with Grandmommy and Granddaddy. Granddaddy took some wonderful pictures of Daniel and Sofia with his new camera. (Here are just a few) They helped take care of Daniel while Mommy and Daddy filled in as nurses on two night shifts. Our free range turkey came out well and we have lots of leftovers to enjoy. Daniel is fussy about what he eats lately but he did try some mashed potatoes and turkey.

Not to be outdone...

by her brother, here's our little girl!

Sofia had a great day yesterday even though it was super long with visits to four doctors and a shot!

She's really, really big now. In fact we think she's just a bit bigger than Daniel...

Daniel in a Pot!

Daniel is inspecting our largest pot for brining the turkey!

Pictures!

Sofia drumming... featuring Truffle





Daniel with Daddy



We also got some huge posters of the kids thanks to Star Rubino who provides the Birth-to-3 services for them. They had a fundraiser where they showed pictures of the kids in their program.

Back home!

Sofia came back home yesterday. She's back on CPAP and we're going to be getting her back to being off the vent all day in a week or so. She's happy and big (almost 17 lbs!) and is glad to be home.

Here's Dad and Daniel playing the drums...



And the weather has been really great so we've been able to go out with the kids. Here's Dad strolling w/ the kids.

RSV or not?

Sofia was really having some problems 4am yesterday, breathing really hard, rolling around very uncomfortably. We thought she might have a GI issue so we took her in to the local hospital. And surprise but they tested her for RSV and she was positive.

So she was transferred to Yale back into the same room she has been in for the last 2 visits.

But then Yale tested her and she was NEGATIVE for RSV.

But she clearly has something as she needed more breath support (back on the ventilator with low settings + oxygen) and was still a bit uncomfortable. So as usual she's going to hang out in the hospital for some time until she recovers or they figure out what is going on.

Beautiful Day

Another great day so we took the kids for another walk with Daddy and Mommy. Grandmommy and Granddaddy also left this morning after spending the weekend with the kids.

Sofia is doing great and is basically now "weaned" off the vent. She's still on the vent at night while sleeping but for all other hours we are taking her out as much as possible so we can catch her up development wise. She continues to gain weight and most days she's doing well with her reflux (and thus happy!) but sometimes like today it is a little tougher.

Our First Walk

It has taken more than a year, but Mommy and the babies took their first walk together in the double stroller. We enjoyed the nice fall day. Usually we use the double stroller to hold Sofia's vent on trips to the doctor but not today. She is off the ventilator for all of her waking hours and only on it at night. Both Daniel and Sofia had fun looking at the leaves and breathing the fresh air.

Halfway

Sofia is at 12 hours of mist trial today yay! Also it looks like her reflux is under control again so we are moving to 24 kcal/oz of Alimentum to give her more calories.