September 13, 2013

doctors and therapists and specialists. (oh my!)

Having Ruthe home is just fantastic!!  Even on limited sleep.  We've gone on four successful outings so far, and each time I'm just amazed by how well she does!  But I guess anyone who had only ever seen white hospital walls would be fascinated by the outside world.  Really she just sleeps in her car seat.  haha!

I already posted about her big first outing.  The next day she had an appointment with the pediatrician that we went to all by ourselves!  I was a little nervous, but she did SO well.  She was cold in the exam room and made me hold her the whole time (except for a couple videos and a quick picture!) or else she'd scream her head off.  Her pediatrician is super nice!  He's familiar with diGeorge Syndrome and made me feel really comfortable that he's going to keep a sharp eye on Ruthe's blood tests so we can catch any developing issues before they start causing problems.  Our visit was so quick (not in a bad way) and I was stuffed with so much information that I completely forgot to ask for her height and weight percentiles... She weighs 10 pounds even, and is 22-and-a-half inches long (give or take, she was kinda squirmy).  We go back in two weeks, so I'll be sure to ask then!! 

After the doctor, we came home to rest, snuggle, eat, and clean-up.  Then we ran over to Walmart with my mom to get a few things that we realized were missing from our pile of baby things.  Like a monitor.  I still haven't used it, but I like knowing I have the option.  Ruthe slept through petty much all of the Walmart experience.  And it was the first time I felt really stressed about having her around so many people.  Probably because I don't like being around that many people myself... 

I also ran into GNC to get one of their blender ball mixing cups for Ruthe's formula.  Since she's on a higher calorie diet, I have to mix more than the normal amount of powder and it gets pretty chunky.  So to save myself the hassle of shaking my brains out (although it was probably a good arm work-out) I got the blender ball.  Let me tell you, it has worked wonders!!  I realize that I just sound lazy, and I know it really only saves me about a minute of time, but I would have tried anything to make mixing her formula easier.  Speaking of formula... this girl has been home a total of four and a half days and she has already gone through one and a half cans of formula.  I think she eats too much...  Just look at her cheeks!!

This morning, Ruthe and I went on solo adventure #2, to her physical therapy appointment.  Since she spent so much time in the NICU, and because healing from her heart surgery kind of limited her range of motion, she needs therapy to help stretch her muscles all the right directions.  The therapist showed me how to exercise Ruthe's legs, help her work on controlling her big ol' head, start getting used to being in an upright sitting position, and putting her hands together up by her face so she learns that they belong to her.  It sounds like a lot, but it's really all things I can do during a diaper change, or while we're just sitting on the couch relaxing, or skyping John.  There's not really a set amount of time we need to spend on anything yet, but as she gets older, and they can determine where she really needs the most help, our guidelines will be much more specific.

Over the next few weeks Ruthe will have appointments with all her specialists.  She'll see cardiology and they'll start thinking about when her next surgery will be (probably in the next month or so).  She'll see her gastroenterologist and pediatric surgeon to get her "mickey button" so we don't have to have the tube open or dangling from her body all the time.  She has to follow-up with a geneticist and immunologist for her diGeorge Syndrome.  And there are at least two that I'm forgetting... it's a long list :/  But I'm really so grateful to have the list already made for me, with notes on when she needs her next appointments.  The hospital really did everything they could to prepare me for bringing her home, and I'm so glad they did!  I would be a lost cause otherwise!!

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