The Latest

Today, Sofia was weaned to room air (21% oxygen) and doing fine. Some days she likes to take her bottles and other days she doesn't. The nurses tried a new pacifier with her but she still wasn't able to hold this one in her mouth. She is on the verge of smiling and Mommy almost caught a smile yesterday.



Now that Daniel is bigger, he's been sporting some more grown up clothes. His reflux is improving, but he still likes to stay awake for a couple hours each night. He rolled over today during tummy time, which was probably completely accidental, but a good step. He was very excited looking at his rainforest gym today.

Sofia improving

Over the last few days Sofia's oxygen has gone down from 30 to 23% which is almost room air (21%). Then they will start weaning her pressure and rate down which is the real stuff. She's doing pretty well. She was a bit more cranky/fiesty than usual but is still taking a lot of her feeds through her bottle and mostly on the regular vs the slow flow nipple. She's still less than a month taking the bottle so it will be at least another month before she'll be all bottle but "luckily" she won't be home for 2 months anyways...

Mommy and Daddy continue along their training to become nurses. We're pretty much all signed off on everything we can be except for trach removal and insertion which can only be done once a week. We're hoping we can start doing our 12-hour stays around President's day which should have us all ready to go for her to be home by April.

Except for setting up home nursing which is, of course, a huge pain due to the high demand for nurses and because she needs 24 hour care.

First Smiles

Today, Daniel looked at Mommy and Grandma and smiled, we think intentionally, for the first time. He has since done it twice more. Hopefully we will be able to catch it on film soon enough to share it with you.

Playtime

Mommy brought Sofia's gym into the hospital. She seemed to enjoy looking up at the toys. She spent some time on her tummy too, which is not as easy with the trach. Tummy time resulted in naptime after a good ten minutes.



Daniel likes to hang out in his aquarium bouncy seat. He is starting to grow out of his newborn outfits now! Here he is hanging out with Daddy this evening.

Sofia on Monday

Mommy and Daddy visited Sofia on Monday. She took 100% of her 9, 12 and 3pm bottles. She is also up to 7.8 lbs!

Even more snow

It snowed yet again yesterday day a few inches and in the evening a few more inches. So once again we were unable to get out to see Sofia. We did have some friends come in and went out for the first time in months to grab some dinner but mostly it was indoor cuddle time with Daniel.



We're heading off this morning to see our little girl!

Improving

Sofia is growing like crazy and is now almost 7.5 pounds! Also her rate and her pressure are both down which is the first down in quite a long time.

We also picked up our new Volvo today, which is a lot like our old Volvo today except it is a year older but has a V8. Net-net a much nicer car, except that it has dark interior but that's ok.

Snow Again

It is snowing again today so Mommy and Grandma are staying with Daniel at home today. He has been eating a lot (sometimes up to 100ml) and his sleeping seems to be improving. He just likes to stay awake right at the time we want to go to bed. Today is bath day and we are now using the real baby tub (no more pink hospital bin to wash him in).

Sofia is doing better, in part due to a blood transfusion on Monday. This slide show is from yesterday's pictures at the hospital. She was so awake and alert, wanting to be held sitting up so that she could take in her surroundings. Her breathing and heart rate are improved. Yesterday, they were able to lower her ventilator settings a bit. Sofia is getting 55ml, in bottles during the daytime, and has been gaining weight. Yesterday, Mommy and Daddy changed her trach all by ourselves, without help from the nurses. We will each have to do it three times before she comes home.

Grandma's Daniel Slideshow

Enjoy...

As an update our team meeting went well. They acknowledged where they failed in communication internally and with us and we've come up with a plan to get daily communication with the attendings. They have also specified the milestones for getting Sofia home.

It is still looking like 3-4 months, especially given recent setbacks. But at least we are more clear on it. Otherwise she's doing ok, but is still a bit tempermental. We think she just needs more cuddle time. She's take about half of each bottle now, with the rest (increased volume as well as she is growing) through her feeding tube.

Daniel had some reflux of his own so is now on pepcid but otherwise is 7 lbs now and the pediatrician is really happy with his growth and development so far.

Oh yes and the car ended up being totaled after all. We'll probably get another XC90. And snow tires.

Update

Daniel is growing, he’s almost 7 pounds now and is sleeping a bit better.  We were thinking he was getting a bit too full or maybe something in Mommy’s milk was keeping him up.  But the last few days have been a bit better with him at least staying asleep for 2 hours or so at a time.  He does seem hungry always though!

 

Sofia is yet again higher on her rate and O2.  Mostly this is due to her gases needing to be better than in the NICU.  It may also be related to her fidgeting and driving herself crazy when she isn’t happy.  She growing, but only slowly (10gm/day) and should be at twice that at least.

 

Today is our big team meeting kickoff.  Right now there are a lot of things on my mind that need to be addressed…

 

Back to work

Daddy went back to work today. It was tougher than it needed to be because Daniel was up all night howling. We think it may be related to overfeeding him or some kind of allergy and will find out soon. Hopefully... Daniel's eyes are doing well and it looks like he is past that at least.

Sofia is up a bit on her rate. Her transition upstairs has been ok but she hasn't really improved in the last month or so. We haven't yet had our team meeting upstairs but we definitely need to get onto a plan as right now it is all very fuzzy and because they move more carefully and deliberately (in general a good thing) it basically means we don't know how long she'll be there or what the expectations are.

The car turned out not to be totaled but of course the insurance company can't get there until Thursday and after that it'll be 2 weeks or so until it is fixed up.

And finally take a look at this pic. I swear it looks like that Sofia has red highlights, of all things!

Ronak and Mere visit Sofia

Here's a pic from this past weekend...