Its not Bad News Yet

We still don't have concrete answers but things aren't looking as wonderful for Payton as they did in the early days.

Its important to mention that she's still doing extremely well with her breathing and that in itself is one of the biggest hurdles of a CDH baby and we're very fortunate that its no longer an issue with Payton.

Its the 'other stuff' that's proving to be her nemesis.

Her PICC line in her foot definitely 'looks' infected (here's a video of Payton in my arms with a quick peek at her leg) and her leg is very sore.  Payton doesn't cry often but everytime we moved her she cried in pain so her leg is very sore.  They started her on antibiotics so hopefully in a day or 2 she'll be feeling better.  Infections scare us.  Its what caused the loss of our twin boys so we're very weary of infections and we'll be keeping a close eye on this little bundle (and questioning everything along the way - I'm sure the nurse was a bit annoyed with my 20 questions today regarding everything :)

They put in another "PICC" line in her other arm (recall her 1st PICC line initially went into her arm) and after the earlier post they did another 5 x-rays (a total of 9) to try getting it into the right place.  They never told me that she had that many, I overheard a guy from Radiology commenting about it and later hearing him on the phone with the doctor asking why one of the babies had had 9 x-rays...apparently that's a lot because he did mention that she shouldn't have any more. 

They didn't get the PICC line in properly.  Apparently Payton has weird anatomy (like we didn't know) and her veins branch funny so that the PICC line kept veering off course.  Thus, they didn't get it placed where they wanted it but they're hoping it holds for as long as they need it. 

They aren't really calling it a PICC line since its not placed properly so they're calling it a long line or something like that.  She's still able to get her TPN and nutrients with it (and now antibiotics) so hopefully it'll suffice.

On another note, I found out the reason for the dye test request and the reason it wasn't done.  Apparently they suspect a blockage in Payton's bowels.  Thus, surgery wanted to do a dye test on her intestines to map them out to see if they could identify a blockage.  They put the request in and radiology this morning reported back that the test they wanted to do wouldn't provide them with that info (as per the nurse).

Surgery was by her bed later in the day and they didn't mention the test but did mention that they were going to watch her a couple more days and hope that the drainage from her stomach would lessen.  The one surgeon said it could happen on a dime so they would give it a bit more to settle down. 

Again, our nurse shared that they have been making noise about the potential for a blockage and are getting impatient waiting for her stomach to start working.  So it may be that we need to start preparing ourselves for another surgery.  We hope not but we know that if there's a problem, fixing it sooner than later is best for Payton.

On a good note, Payton is now up to 6 ml / hr on her breast milk feeds.  She hasn't pooped in 2 days (but not uncommon for breast fed babies to wait a bit) but still, her feeds are going up so there should be some poop in there somewhere.

Still, she's doing well with not bringing up breast milk (the OJ tube in her stomach is just bringing up bile, but a lot of bile which is why they're concerned her intestines have a blockage) and they are now increasing her feeds but another 1 ml an hour every 8 hours.

So by tomorrow sometime she'll be officially at 1/2 feeds (1/2 being 10ml/hr). Again, its continuous feeds so the next step would be getting it all down at once rather than continuous.

I asked today about when they would start mouth feeding and the doctor said once Payton's at full feeds they may start introducing feeds orally.  So maybe in a couple of days we'll be able to start giving her some milk via a bottle.  I think to some degree it'll depend on how her stomach is working (or not working).

So that in a nut shell was our day.  Here's a few pics from today to show that it wasn't all bad and that despite Payton's busy day we did have some peaceful moments (and Dwayne got in on the cuddle action after I left so she did get some good cuddling today which she more than earned).