you hold her, I’ll catch the urine

Sophia hardly slept at all again last night.  Every time she came close to drifting off, either the nurse, aide, or lab tech would come in for something and wake her up.  She didn’t seem to be in pain; she just didn’t sleep.  She also didn’t sleep that much during the day today, so we’re not sure if this is a thyroid issue or just an adjustment to having been on sedatives after surgery.  Either way it would be a lot easier if she didn’t need me to hold her pacifier in her mouth while she tried to sleep!  


Sophia continued to tolerate her feeds today.  She is now up to her continuous feeds goal rate of 2/3 ounce/hour,.  We expect that they’ll speed it up tomorrow and  then give her breaks, so it will be more like the experience when she was bottle feeding.  Once this gets stabilized, we can find out whether we can start giving her a bottle of thickened milk again.


She had another mild fever over night, so they wanted to do a urine culture in case she got a urinary tract infection from being catheterized during surgery.  I explained the difficulty we had last time getting her sample, so they asked us to catch her pee again (that’s me above standing guard).  We thought we had a good plan, waiting until she got her diuretic Lasix, but it still took us close to two hours of holding a specimen cup between her legs.  Sophia’s neurologist stopped by on his way home and was amused at us sitting there underneath the clothes line that her feeding tube attaches to, holding a specimen cup in her diaper.  We also tried holding her upright over the cup, but that didn’t work either.  Papa finally made her pee when he started pressing on her bladder–guess you could say he squeezed it out of her.  Funny how she could be dry for two hours when you want her to go; let’s hope she’s able to hold it like that when potty training.


A nurse stopped in and asked if we would mind if another couple whose son needed a G-tube came and met Sophia and talked to us about the procedure. He’s almost exactly the same age as Sophia and has been here since birth (he started turning blue when he was being discharged on Easter).  After his heart surgery, he was intubated (with a breathing tube) for five weeks, so he has not been able to eat by mouth at all.  Even though none of this has been easy and there are still many challenges ahead, we are reminded every day just how much worse things could be.


Hopefully someone from Cardiovascular Thoracic Surgery (CVTS as they are referred to around these parts) will finally stop in tomorrow and we can find out what they plan to do about sending us home.