Calling it a New Name

After talking to the head surgeon today I've decided we're going to give Payton's feeding tubes a new description.  We're no longer referring to them as 'surgery'.

The description given as to how they place the adominal feeding tubes include a needle that goes into the stomach and then into the intestines.  The hole is then stretched and a coiled tube is then fed down into the small intestines for placing.

I've decided that this doesn't sound like surgery at all so we're not going to label it as such.  I don't have a name for it but if anyone has any suggestions I'm all ears.

Payton was a dream today.  Her feedings have been slowed as she gets closer to her full continuous feeds.  She has also gained a bit of weight (yesterday she had lost a bit but I contributed it to her stomach bleed and temporary halted feedings).

Still, I was very surprised to see that she weight over 8 lbs now (8 lbs 2 oz to be exact - recall she weighed 6 lbs 13 oz at birth).  As a baby who's been mostly fed via IV (and hasn't yet hit her full feeds yet with a stomach that is expelling most of those feeds) we're pretty happy about her gain. 

While holding her she did fuss a bit and it was nice to think that as a healthy baby she would fuss also.  So I ensured that her tubes/lines weren't pulling and that her PICC hand wasn't bent funny and then I just did typical baby soothing gestures to calm her.  These seemed to work just fine.  She didn't have any gagging so I was content to let her fuss just a little because babies do fuss and as a baby, she should be allowed to fuss.

Grandma Val was there and held her for a bit.  It was the 1st time I was able to interact with her on that level (rather than her propped up in her crib).  I was able to put my face in front of hers and she could track my movements back and forth.  I played with her hands and moved them in front of her face so she could feel the sensations while looking at them. 

Finally we did some leg movements.  One of the things that's been in the back of my mind is that Payton's digestive track is really scrambled.  Even a healthy non CDH baby has bowel issues and gassy tummies and when they do, relief can be had by moving their little legs up and down.  I was curious with the fact that with Payton, she never has that because she's always in her crib (or held very tenaciously with copious wires/tubes coming out of her) that she doesn't get 'played with'. 

So today I moved her legs up and down, back and forth and let her push off of my hands if she wanted to.  I think she liked it. It's going to be our exercises every day now even if I don't have a helper to hold her for me so I can be on the same level as her (she sits high in her crib so I'm always looking sideways at her).

On another note, her foot IV is gone (yay, one less wire).  That was the line they put in after she had her stomach bleed and now they're giving her the medicine for her tummy orally so the line came out.  Yesterday I counted 12 tubes/lines into her but today, while driving home I could only remember 9 of them off the top of my head... so I'm sure I'm missing something but for now I like the idea of only 9 to go so we'll rely on that for now.

Oh, and before I forget.  Meeting with the head surgeon, he mentioned her feeding tubes could be placed as early as Thursday but they would let me know.  He also mentioned (contrary to what the surgeon said yesterday) that they would only insert one tube into her intestines and they would move the drainage tube into her nose (so not clearing her face and back of the throat like the other surgeon said).

So there you have it, even this far out with Payton's care we're still recieving mixed information but we still have a plan and it seems like a decent one.

Here's a couple photos of Payton...her hat today that I finally had a chance to try putting on (didn't work too well but better than trying while she's in her crib).

I had to include a comparison between Payton and Olivia and how similar they look.  Here is a picture of Olivia at 3 weeks (close to the age Payton is now).

Cozy cuddling with mom.

Wide Eyed.

Here's a hat I've been just waiting and waiting to put on.