Great Pic of Daniel

Great Picture of Sofia

Xmas Slide Show!

Grandpa went home today after spending Christmas with the kids and Grandmommy and daddy are coming in so we have another round of present opening!

Still no day nurse which makes 4 days in a row and 5 out of 7. Hopefully we'll have someone tomorrow as Mom and Dad are really tired.

All Wrapped Up

Sofia is pitching in for Christmas by wrapping up some gifts... sort of.

And for Xmas this year we have... no nurses Wed-Fri during the day. It has made things extra crazy for mom and dad.

But it will all be worth it.

And here's our Xmas card (in case you didn't get one already!)

Winter Wonderland

We woke up bright and early today to shovel/use the snowblower on the driveway so that our nurse could get out. We probably got 8 to 12 inches.

Daniel had his first encounter with snow. He tried to crawl in it and ended up face first in the snow which of course resulted in a few tears. He enjoyed looking at our winter landscape.

Our tree is up and the kids have been checking it out. Daniel especially likes the presents....

The Latest

Sofia came down with some tracheitis last week and is on antibiotics again. She is just about back to herself today.

Daniel has been giving us trouble going to bed again, and his fussy eating (especially not wanting to touch anything slimy or sticky) prompted us to see an OT who specializes in sensory issues. Daniel cried very hard when he touched the shaving cream. His eating though is beginning to improve. He now picks up rice and will let us feed him just about anything with chopsticks.

Here is a picture of Daniel at the holiday walk in town a couple weekends ago on a cold night....

Getting stronger

Sofia is getting stronger and here she is sitting on her own and playing with her activity table.

We're also trying her on the passy-muir valve which forces her to breathe out through her mouth and nose with mixed success. She can go a few minutes on it but it is pretty uncomfortable for her but it is good to be able to hear her make a few sounds.

Likely though she won't be able to improve much on the valve due to her stenosis.

It's official!

Sofia is larger than Daniel by almost half a pound!

She had been weighing in larger for the past two weeks but we don't trust our scale at home much. However today they both went in to get their second H1N1 shots and the official weigh in was:

Daniel: 17lbs 11oz
Sofia: 18lbs 2oz

Both kids also got their MMR shots so they are both a little fussy tonight.

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.

Happy Halloween!

From Daniel and Sofia featuring Truffle

Nursing

One of nurses had a baby so we're short nurses again. Christie and I have three night shifts this week including tonight and tomorrow night.

Even worse the nursing company knew that she had the baby but didn't notify us so we could've avoided at least one of the shifts.

We're still investigating to figure out what happened but I'm pretty sure it is just incompetence.

H1N1

The adults in the house got their vaccinations today. We're bringing the kids in in a few weeks to get theirs. Sofia just had a checkup and she's doing well except she's still dealing with some pretty bad reflux and some vomiting. Her lungs continue to improve.

Here are some pictures of Daniel with a friend. The kids playing together with Sofia off the vent. And Sofia playing with her doll.

Glasses!

We went to another eye doctor who suggested special glasses for Sofia to try to cure her strabismus. We're giving it a shot rather than trying surgery first. Here she is trying on some glasses. She's also on her HME. She up to about 8 hours a day off the vent and is 16.2 lbs today!

Daniel is doing great too, babbling and crawling all over the place.

Although he hasn't quite gotten the hang of saying "Ma" yet.

Literary

Here is Sofia reading her ladybug book. She is continuing to grow (16 lbs on our scale!) and while we took a little break on mist collar increases as she had some bad reflux. She went to see GI last week and is now also on zantac for her reflux. Things appear to be back to normal now and we are going to be increasing past 3 hrs 2x a day again.

Mist Collar

Sofia is up to 2x 3hr15min. Hopefully tomorrow she will have a good visit w/ GI and we will switch to adding an hour total each day.

I'm Big!

Sofia is now 15 and 1/4 pounds. Yay!

Mist collar trials

Sofia is doing well on trials, she's on 2x 1hr today and we're hoping tomorrow we can be back on an aggressive weaning plan to get her off the vent. We took her on her first tour of the house on Mon since we were able to put her just on an HME for a little while without the vent.

GI wise, she did vomit this morning but otherwise has been very happy. We're bringing her back in on Thurs to check up on her tummy and g-tube.

Daniel is doing well on his sleep training but has been very fussy as he is teething again.

Update

Sofia is back on her mist collar trials and is up to 30min 2x a day and is doing fine. Hopefully on Mon we can get back on the full weaning program. She's also started to eat a little bit of solid food. Here she is in her bib at the kitchen table. Everyone is eating dinner together now.



Daddy and Daniel are ready for college basketball season!



And here's Daniel posing again. We're training him to sleep through the night and it was bumpy to start but is definitely working now. He's got much more energy during the day when he gets a good night's sleep!

Standing Tall

Daniel spends most of his busy time these days crawling around the house and pulling himself up to stand on just about anything - the jumperoo, the tv stand, the couch, the hearth, the windowsill...

Daniel Watches Jeopardy

There's been lots of Sofia updates so here's Daniel a few weeks back watching his favorite show.

Sofia is home again!

And happier than ever! She's back on CPAP w/ her new meds. She's not taking her bottles by mouth though so we'll be working on that over the next week and hopefully after that she'll be back on off the vent trials.

Daniel still has a runny nose but otherwise is pretty happy too and has figured out how to make all of his various (and pretty loud) toys work!

Hospital Pics

Some pictures of Sofia in the hospital.

During her gastric emptying test...


Feeling good enough to play...

Getting Better!

It looks like the new drugs are working and Sofia was really happy for Mommy today as well as doing much better. They are putting her back on somewhat more standard feeds and hopefully will start to wean her back to her vent settings tomorrow. Hopefully we'll have her back by the weekend.

More tests

Sofia had another test today where they checked to see how quickly she was processing food and it turns out she has a delay in moving food through her bowels. This could be what has been causing her to have bad episodes. Her chest x-ray came back clean as well.

So the Drs are giving her some new drugs to help move her bowels and hopefully this will resolve the issue. It is very likely she also had or still has some kind of virus which is making the situation worse (if only because Daniel and Mom have it too) so she's still on additional respiratory support and drugs.

We're hoping she's over the hump and will be home in a few days.

Staying the weekend

Sofia likes it so much she's staying the weekend in the hospital. Well actually she was doing really great yesterday (even though she decannulated herself yet again and needed to be resuscitated) but today she took a turn for the worse again. She's still doing much better than when we took her to the hospital but to be safe the Drs are putting her on some antibiotics and will try again to wean her back down to CPAP and the proper feeds before she comes home, target Mon.

Back in the hospital

Again.

We brought Sofia in yesterday early morning as she was retracting (breathing very hard w/ her tummy) with a very high heart rate and in general extremely unhappy and unlike herself. Of course all tests results and scans were negative but the thinking is she may have some virus that is causing her distress. She's back on ventilator support and on steroids and is tolerating her standard food again and appears to be on the mend.

The docs want to keep her for another day to make sure she is doing better before target releasing her tomorrow.

Mist collar trial!

Sofia started today on her mist trials, 15 minutes 2x a day off of the vent. She's doing one as I write this and is doing great, absolutely no issues!

We're on track to get her off the vent soon but due to her stenosis she'll be on the trach until next Spring at least.

In Memory of Raymond

We have decided to plant something each year around the triplet's birthday in memory of Raymond. This year we chose a pinky winky - a type of hydrangea that blooms this time each year. We will watch it grow as Daniel and Sofia grow too.

Happy Birthday!

The kids finally had their party with lots and lots of presents! Sofia is eating a lot, almost like she doesn't need her g-tube. Now she just needs to put on some weight!