bubble baby’s back on the boob juice

Sophia had a pretty good night, but each time she coughed, she would let out a really loud wail.  I’m sure it hurt her incision to cough, and like our nurse said, she isn’t able to hold her stomach to lessen the pain.  Guess it is a good thing we don’t have to worry about making her giggle while it’s healing.  

 

We finally got permission to give her Pedialyte this afternoon (we’d been told earlier that the adult cardio-vascular surgeon who was covering for peds might not want to authorize it since he didn’t normally work with babies).  It was administered through a continuous drip at 1/6 ounce per hour.  Since Grandma was holding her, the nurse safety pinned part of the tube to Grandma’s jacket to allow gravity to move the food down into Sophia’s G-tube.  While she was pinning it up near Grandma’s nose, the nurse explained matter-of-factly that the syringe she attached to the end of the tube would allow for gas to escape (venting).  I think Grandma was a little unsure what she got herself into, but luckily, Sophia doesn’t have smelly gas (yet)!  The first time she “burped,” we were all really surprised by the loud noise.  I made her ”burp” again later just by lifting her legs during her exercises–this is going to be interesting…

 

At the start of the afternoon shift, Sophia had a temperature of 101.8.  She had been squirmy, but since she was already on Tylenol, we didn’t think she had a fever.  It was gone by the time her next dose of Tylenol was due, so we really hope she isn’t getting sick again.  They did do a blood culture, so we’ll see if anything shows up on that.  

 

At 8:45 tonight, Sophia got to start having her fortified breast milk again (also at the rate of 1/6 ounce/hour).  She’ll be able to increase it by 1/6 ounce every 6 hours, until she gets to the 2/3 ounce she was at before surgery.  This should take a day, provided everything goes well.  

 

When the team was in this morning for rounds, they talked with us about precautions for when we go home.  Because Sophia’s lungs are compromised and she’s so small, even the smallest amount of mucus can really cause her a problem.  Until she gets bigger and her body can tolerate illnesses better, we have to be extremely careful that she doesn’t get a cold.  The doctor said we for sure couldn’t take her to a ball game (which was an unfortunate example since we’d like to take her to Karen’s birthday celebration at the Saints game this weekend), but could maybe take her out to eat if she sat right next to us and there weren’t a lot of people there (which made me wonder where else she’d sit).  He also said the movies would be okay with her right next to us–but I’m not sure that we could take a baby to the movies anyway and again had me wondering where else she would be.  He reiterated the prohibition on exposure to young kids and said we had to tell sick adults to drive by and wave.  Other than that, we just need to practice good hand washing.  I guess this means we’ll be going for lots of walks this summer (away from crowds) and be homebodies, which Sophia will appreciate since it will save her from her car seat.  It’s a bummer we won’t be able to bring her places to introduce her to people and expose her to new things; it feels like she’ll have to kind of live in a bubble.  Hopefully, she’ll grow up fast and be out of the woods soon.  

Tomorrow starts our 10th week of this adventure–more later…