August 7, 2013

days 27 and 28.

Ruthe is ALMOST too boring to keep posting about her every day. That, and I'm getting lazy.

Yesterday the speech therapist came to evaluate Ruthe's feeding skills. They tried feeding her with a regular bottle, and with a special-needs bottle for babies with a weak suck. Ruthe just can't quite figure out what the bottle is for. I'm sure if she knew how wonderful eating can be she would totally get on it! But as it is, she just can't suck well enough to get any milk out of the bottle, and then she has no idea that she needs to swallow the milk she does get. The therapist showed me how to squish her cheeks together while she's sucking to help her get better suction, so I try to do that every now and then with her binky. They're going to keep working with her, just once a day for now, to strengthen her mouth. This is really our only obstacle before taking her home, so I'm just a little antsy, but she can take her sweet time if she needs to. In can wait until she's ready. :)

Her surgeon also came in last night to take out her RA line. That was the IV going into her heart. She had been sound asleep for four hours (I know because that's how long we waited for the surgeon to get here.) so when the anesthesiologist came in to give Ruthe a little sleepy-juice we thought how perfect, she'll never even know what happened. Um... no. Ruthe woke up just as we were leaving and stayed WIDE AWAKE through the entire thing. It only lasted about three minutes, but apparently she was up and screaming at the doctor the whole time.

I don't blame her. They had to stop her feed at two o'clock, because they wanted her to have an empty stomach for the procedure at four. It didn't happen until seven-thirty.  I'd scream through a procedure if I woke up that hungry, too!  And the nurse didn't get her next feed started until after eight.  Poor girl.

Today was nice and boring.  I went over in the morning and got to hold her for a nice long time.  The cardiologist did an echo to check out the bands and stent.  Everything looked good.  She was a little fussy at the beginning of it, but then she tooted [a lot] and was a peach for the rest of the time.

I asked one of the neonatologists that are in charge in the NICU if there are any specific questions I should ask when trying to pick Ruthe's pediatrician.  The insurance company sent me a booklet of in-network providers and the pediatrician list is five pages long...  Dr. Ramsay told me to make sure the pediatrician feels comfortable treating a baby with CHD, a cleft palate, and diGeorge Syndrome.  I think it's ridiculous that Ruthe even needs a regular pediatrician.  She'll be seeing her cardiologists at least every couple weeks for a while, she'll have physical and speech therapy, she needs to see an immunologist for evaluations and tests, and at some point we'll have to find someone to look at and correct her cleft palate.  Surely one of those doctors could handle her shots and measurements.  It's like they all want me to go crazy!

My parents went to the hospital this evening.  Yesterday was the first time my dad held Ruthe, and my mom took a picture of the momentous occasion... and she apparently doesn't know how to use my dad's phone because the picture came out as a blurred view of his head.  So tonight was take-two.


Someday we'll have her at home, and all our pictures won't be in those funky yellow parkas.


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