So Close We Can Almost Taste It

Tomorrow we will get 1 more line (or 2 to be exact since they are 2 in 1) removed from Payton.  A very important one...her PICC line.  She's almost at full feeds (they sped her up for the last 24 hrs to facilitate it) and it means that she will have 1 less line.  The big one to be exact because its the only one left that prevents Payton from coming home.

There are still a number of hurdles we'll need to overcome in the next little while but this is officially the biggest hurdle.  Everything else can stay with her and there's no rush to get anything else off of her.

As far as Payton is concerned, yesterday they closed off her drainage from her stomach and we got to see today how well her stomach is dealing with just processing her own bile.  So far she's done well (plus 3-5ml feeds in the mix) and though she did aspirate 2 times, she's doing so much better than I would have ever expected.

We're still on the 1.5-2 week time frame but its finally becoming more of a reality than a dream.

Odds and Sods

1st a quick update on Payton today. Her skin surrounding her MicKey is looking red and inflamed.  The surgeon doesn't believe its infected (since they almost never get infected) but it is sore and inflammed and they will keep an eye on it and work to keep it dry. 

They have clamped off Payton's drainage tube to see how she tolerates the excess fluid in her stomach - I'll try to update later when we know how she's doing.

There was also a bit of a ray of sunshine.  They are now saying its possible that she could be home in 1.5-2 weeks.  They'll start organizing things we'll need to care for her at home so that we can be good and ready when she is.

In the meantime here are some photos from over the weekend.

Here's what Payton's new scar is looking like.  It looks amazing to how it looked 10 days ago.

A new cuddle position (for the day since Monday we were back on our backs)

The other precious little one after a busy day in the hospital and a special treat from Dad, her two current favourite cartoon characters, Ruby and Max (aside from the Cat in the Hat).

The play room mural - thanks to the VanBibber clan (and Grandma Val) for giving it a fantastic start.  Still needs some work.

Payton's OK

That's what our Primary nurse always says 1st when she calls us to update (and we thank her for it to relieve our worry when we see that the hospital is calling).

Anyway, I've gotten a bit of flack for slacking off on updates of Payton. Not my intention but rest assured its because Payton is ok and things have settled into a slow progressive pattern.

They continue to increase her feeds slowly and she's now at 16 ml/hr.

The great news is her G-tube output has significantly decreased thus her feeds look to be absorbed 100%. We think its likely from the 2nd surgery where they untwisted her stomach along with placing her G-tube and JG-tube.

In other news, the reason we've gotten so behind is because our schedule has gotten busy with activities that take us away from the computer (ie this blog post is via Dwayne's phone).

We've both been cycling, hiking and I'm going to soon start adding running (something I can do with Livy in a short period of time).

Livy continues to advance and we continue to be in awe of how smart she is. If she didn't look like Dwayne I'd question whether the lab made a mistake.

I have a few pictures I want to add but there not on Dwayne's phone so I'll add them later. Rest assured we're keeping busy and trying to sort out a schedule that will hopefully be well established by the time Payton gets home (nurse today said 4 weeks but we're optimistic).
Sent on the TELUS Mobility network with BlackBerry

Open eyes and Fryer Tuck hair cut

There are rules starting today.  No more Fryer Tuck or Klingon jokes (after my title that is)!!!

She's very sensitive about her hair.  I can't believe they didn't just shave her completely and I did have to express my curiousity about why they would choose this particular hair cut - a mullet in the making??  It does sort of suit Dwayne and my life stye (more Dwayne than me but that's another blog post :D).

Alas, I hope unlike her sister her hair grows fast.  By the time she comes home we may reconsider cutting it all - we have a bit of time to make that decision.  Its still nice to have some downey soft locks in the back to touch (nothing softer than new born baby hair).

Payton continues to do well and its been confirmed that we're taking it slow this time.  Her PICC needed to be adjusted just a bit from yesterday but its doing well.

Her feeds have been increased in frequency to every 12 hours (instead of 24) and today I got to do her 3rd oral feed...breastmilk from a bottle which she LOVED and would jerk forward for more every time I moved the bottle away from her (so she could swallow - something she hasn't had much experience doing). 

Its weird to see the milk come up her feeding tube almost immediately but I'm more concerned/glad that she's orally feeding than how much she's processing.

They're going to wait 24 more hours then start giving her milk more frequently via mouth through out the day so still cautiously slow but progress none the less.

Oral Feeds Started Today!!

Payton is a big girl today - she's once again starting oral feeds.  Now, just like before its only 5ml per 12 hours and it'll get drained out of her stomach about as fast as she'll drink it but its great for her learning and stimulating oral feeding for that day down the road when her digestive system can handle eating like a normal baby.

Here she is before she was sent to Radiology this morning.  Very content even with the nose tube.

Here is the dreaded walk - thankfully this one wasn't to surgery and again, hopefully for the last time.

Some much needed cuddle time with a (almost) bare faced baby.  She still has clear tape on her face but she doesn't even notice it (and its hard to see it).

Ok, one nostril is bigger than the other from all the time with a tube in it (as her tough love Daddy said, since she's already signed up for plastic surgery later on, we'll just roll that in as well).

Big stretch and getting comfortable. You can see her PICC line in her bicep on her right.