Weaning again

Sofia continues to do great and she's finally weaned back to what she was at on the ventilator before she caught her two colds. She been home almost four weeks now so this is good news! Hopefully she will now be back on aggressively getting off the ventilator.

She's also doing really well in taking more feeds by mouth. She constantly pulls out her feeding tube because it really bothers her but unfortnately we have to put it back each night until she can take all of her feeds by mouth. It is a bit of a catch-22 unfortunately but she is getting better.

Nursing continues to be a struggle. We were down three as of last week. Two new nurses have or will start full shifts soon and one nurse is back, however one nurse will be gone for a while in the hospital. And then incredibly ANOTHER two nurses are off the case for various issues so we are STILL down two nurses or about 4 nights each week, assuming nothing else goes wrong. There are still some nurses in the pipeline so all isn't lost but it seems like we can't catch a break on this.

Weekend Laughs

Grandmommy and Granddaddy came to visit and help out since we were short on nurses. They captured these great pics of Daniel and Sofia laughing. Although you can't hear Sofia's laugh, we know she does when she's happy.

Extreme Nursing

We are down three nurses now.

The replacement nurse didn't work out so we are still down the one from 2 weeks ago. This week one other nurse ended up in the hospital needing surgery. And another nurses's son is in the hospital too.

So this week we're going to cover about 100 hours of time for Sofia (up from 50 last week) and until replacements can get in place it looks like next week will be just as brutal.

There are 2 experienced nurses in the pipeline, and 2 unknown quantities and hopefully the original 2 nurses can recover. Grandma also is away for most of next week so if we none of these nurses work out / return we're going to be at the end of our rope.

Even More Pics of Sofia

Chilling in Her Crib...

On her Exercise Ball!

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In Her Jumperoo! She really can bounce!

Uncle Jim's Visit

Uncle Jim came to visit on Wed on his way back to DC. Sofia went out on the deck for the first time and played with everybody. She had a really good day!

Sofia pulled out her feeding tube

yet again yesterday so we tried to her feed her completely from the bottle when she was hungry and she took 180ml (out of 280ml) which makes it pretty much a success! We had to put the tube back in at night because she needed her meds and to be fed while she was sleeping and she wasn't happy at all about that. She's been sleeping all day so far today and is doing great.

And of course Mommy and Daddy are on nursing duty tonight again.

Here's a slideshow of her without her tube from yesterday.

Any Nurses Out There?

The schedule is still not set and we are not sure if the newly trained nurses will be ready so Mommy and Daddy worked the night shift yesterday and will again tonight and maybe next week.

Sofia is off of her antibiotic and oxygen and will hopefully soon start eating when she wants during the day which should get her off the feeding tube soon.

Sofia doing better!

She's back on room air and had a really good day playing with everybody and smiling a lot yesterday. Here she is enjoying her bouncer and her bumpo. The plan is to try moving her feeding schedule to much closer to as needed to try to get her to eat everything by mouth vs her feeding tube.

Some pictures

From Mother's Day

Big Trip

Sofia went on her first trip back to Yale yesterday. She first saw the pulmonologists and ENT and she is doing well. She still needs to get over her second cold in a row and then we can start weaning her down again. She's still growing a lot which is great! Then she went to see the hearing specialists and they fitted her out for her hearing aids. She was good through the whole trip and didn't cry and is in general doing a lot better today.

Mommy and Daddy were nurses again last night and hopefully this will be it and the agency will be able to fill in the gaps by the end of the week.

Today Sofia has another big day as we are doing her first scheduled trach change and Birth23 is coming for her full workup, after which they will create a plan for her.

A Career in Nursing?

We had to let one of our nurses go and right now there is no redundancy in the schedule so Mommy and Daddy had to take shifts last night and possibly tonight as well. Sofia is still recovering from her cold and isn't 100% so it wasn't that smooth but you have to do what you have to do.

Happy Mother's Day

Daniel and Friends

Daniel hanging with Cookie Monster and Big Bird, and trying out his new high chair!

Bath Time at Home

We wheeled Sofia's vent into the kitchen to do her bath in the sink, just like her brother. Here she is all wrapped up in a towel after enjoying her bath. She is feeling much better, except that the antibiotics are upsetting her tummy. But yesterday, we got many smiles and a happier baby.

Bananas

Daniel tried bananas for the first time yesterday and really liked them. Mommy mixed them into his cereal. We will wait a couple days just to see how his tummy does before repeating them.

Things have settled down at our house with Sofia, and we have improved our trach tie changing method. But it is looking like she has a cold. She is coughing and has a runny nose. So far she hasn't required increased settings or oxygen but we are keeping a close eye with the help of the nurses. No more play dates with Daniel until she is better! Here are a few pics of them together on the day Sofia came home:

911

Yesterday, while changing trach ties (the soft bands that go around Sofia's neck and hold the trach in place), Sofia decanulated herself (meaning her trach came out - which is not unusual since she squirms and fights). Mommy and the nurse put it back in and bagged her but she still wasn't breathing right and was frothing at the mouth. While Daddy and the nurse continued working on Sofia, and switched to the emergency trach, Mommy called 911. The paramedics arrived and Daddy helped direct them since they weren't totally prepared to take care of a baby with a trach. It was a scary situation but Sofia is now fine. After consultation with her pulmonologists and pediatrician, it was decided that she did not need to go to the ER so as to minimize exposure to germs. The pediatrician stopped by the house to see that Sofia was doing fine and today she is happy. Mommy and Daddy are realizing that having Sofia home is great, but it is still a big responsibility and requires the ability to react calmly and quickly when needed. The experience is resulting in more planning and preparation for that just-in-case scenario.