Thursday, March 28, 2013


In 2 days we are leaving for Florida vacation with a bunch of awesome Vinje's, to celebrate the marriage of Olaf + Stacey!  ♥   It will be great and we are all very excited.

Everything with Cecilia has been great.  She is gaining weight perfectly at the moment, her o2 saturations are running 88%...she has been drinking slightly more formula than her daily requirement, and we have not used the Gtube in 3 days!!  ♥  Life is feeling pretty great.

She still can not sit, but we work everyday.  I feel like it will be before 10 months for sure.  Cecilia turns 9 months old tomorrow.

There is not much to talk about when everything is going so great!

Cecilia was sick earlier this month.  It was scary and stressful for us, and you will see why as I am posting pictures.  Cecilia doesnt get a lot of oxygen to her body as you probably grasped that part of her condition by now.  She first started showing signs of being sick Tuesday evening.  She vomited about 3 times, and had severe diarrhea, but she did not have a fever.  The following day we saw her Cardiologist in the afternoon for an echo and check-up.  He said that she looked good.  I dont know what changed from then and the next morning.  But when we woke up Cecilia was very cyanotic and looked so sick because she was dehydrated.  We stopped giving her formula at this time and just gave her Pedialyte.  After an hour or so she still felt terrible, but she looked so much more stable.  The nurse came for her weekly visit the next day and we called cardiology on call to let them know of her severe weight loss.  The next day we had to take her in to see the Pediatrician and he said she was fine enough to continue riding out the virus at home.  It was terrible watching her feel the way she was.  Now that winter is over hopefully she will go a long time without being sick.

ugh breaks my heart seeing her sick!

no more purple hands.  Thanking the Lord for Pedialyte and for the Gtube this day<3

All Better ♥

Cecilia has been teething for a couple of months...and still nothing...maybe soon

I'm sure I will write a blog sometime after Florida, but before the Heart walk on April 20th.  However, lack of updates is usually a good thing because it means we are all happy and doing fantastic! ♥

Monday, March 18, 2013

Oral feeds

So I havent been able to update because we've been sick, and then I spent all weekend re-arranging bedrooms...but quickly I want to brag that Cecilia is back to drinking bottles!  She gets 12 hr continuous, but will keep adjusting that as she intakes more volume orally.  <3   I think it clicked when she was dehydrated.  But as soon as she was better she refused the bottle again...until we ditched this yucky formula and switched back to Sim sensitive.  Im glad this happened before they go up on calories.  Right now she is on 24 calorie per ounce.  I suspect they will make us go back up to 27 cal per ounce when we have our GI check up because Cecilia is not growing.  Ok, anyway, I have a bigger update with pics  coming as soon as I have a moment to upload pictures to my computer and type it out.  But for now, just know I am so happy to see this baby improve.  Today we work on sitting.  The home PT therapist will be here any minute to work with Cecilia.