August 21, 2013

ketchup. [day 39 to day 42.]

Ketchup is delicious.  Even if you spell it "catsup".  It's just the best.  John doesn't think so, he's a mustard kind of person.  Ketchup is also awesome because it doubles as fake blood...  fake blood you can dip your fries in!

It's late, can you tell?

Anyway, the last several days have all blended together in my head, so none of this is going to be chronological and it's really just going to be the highlights.

My brother Tyler came to see Ruthe.  My mom may have bribed him with dinner, but he still came and held Ruthe for a quite a while.  She was asleep, and after too long so was his arm!  That happened to me today, too.  Ruthe's big ol' head has a way of finding your nerves and pinching them juuust right!


Ruthe is such a well-behaved baby.  Really.  She hardly ever fusses.  And when she does, her binky will calm her right down.  If she's mad about needing her diaper changed, she'll tell you about it until you're done and she's clean and that's it.  If she doesn't want to be swaddled she'll wriggle herself out of it.  If she thinks you're boring or too loud or anything isn't exactly how she wants it she'll just fall asleep.  [Or fake sleeping until all her demands have been met.]  She's so well-behaved, in fact, that the nurses rarely check on her.  They do their "cares" every three hours when she eats. They take her temperature, change her diaper, give her any meds she's scheduled for, and sometimes measure her girth or listen to her chest and belly.  But that's really it.  Sometimes when I go in to visit her I'll be there for an hour before I even see a nurse.  One side of my brain tells me that's a good thing - because the nurses aren't expecting Ruthe to need any other medical care other than what's scheduled and normal.  The other side of my brain is screaming, "Why are you not right here next to my baby at all times watching her like a hawk in case of an emergency??!' 

After Ruthe's swallow-study, the speech therapists decided that they need to be the only ones giving her a bottle everyday.  And then I heard that either them or the nurses could do it.  And then the nurse told me it was only speech therapy.  And then the speech therapist said she thought the nurses were still doing it on the days they couldn't.  Long story short, Ruthe missed three days of bottle-feeds and I was one confused and upset mess of emotions.  Obviously I want Ruthe to learn to eat from a bottle.  And obviously I want a trained professional to be the one teaching her.  My vote was always for speech therapy to come in everyday and work with Ruthe.  I feel like that's more consistent than anything else, and will help her get the hang of feeding herself.  [It's also a little bit because I spent twenty minutes watching one of the nurses trying to figure out how to assemble and use the special-needs bottle they prescribed Ruthe, and that just seemed a little wrong.]

Once a week they change out the feeding tube in Ruthe's nose.  So the other night, maybe Monday, the nurse took out her old tube and replaced it with a new one.  Ruthe HATED that.  I'm sure it's uncomfortable in the first place, but the nurse didn't really listen when I said she has a cleft palate until he saw the tube curled up in Ruthe's mouth.  The second try didn't even get it past her nose.  Finally, after listening to her cry [and I mean really cry with tears and a red face and everything] for what felt like hours the tube was in, all the way, and the nurse could start her feed.  Well, when I got to the hospital the very next day, Ruthe's feeding tube was going in her mouth.  Ummm... why?  Well, because the day-shift nurse knows that when a baby has a nasal cannula the standard procedure is to NOT put anything else in the baby's nose, to keep it from getting crowded or blocked or whatever.  So she took the tube back out of Ruthe's nose and stuck it down her throat through her mouth.  I was so confused, again.  Thankfully I wasn't there while they were doing that again, because I probably would have just unhooked everything and taken Ruthe straight out of that dang hospital once and for all.  I just couldn't comprehend why the nurse would think it was a good idea to put Ruthe through that kind of torture twice in twelve hours.  And, talking to other nurses and doctors about it, I learned that if speech therapy is concerned that having the tube in her mouth will cause even more problems with her eating from a bottle and swallowing, they'll move it back to her nose.

The hospital has implemented a new security-system for visitors.  In theory, it's a great system and I'm really happy with it.  In practice, I have to stand in line for thirty minutes to get a visitor's badge.  Standing in line isn't really the problem... it's standing in line behind so many unprepared people visiting moms and healthy babies that get to go home in a few days that really irks me.  The security guards ask for a valid ID and the patient's last name and visitor's code.  The ID is no problem, the last name is easy-peasy, the dang security code is where we hit the snag.  My personal opinion is that if you don't know the code you should have to step aside and call the patient yourself to get it, so the next person in line can get through.  Nope.  The security guard looks up the patient's room number and calls up to ask them specifically if the visitors are welcome.  And then takes their picture and scans their ID.  It kills me.  I have the least amount of patience standing in that line.  And I've been asked by more people if I speak Spanish [and can explain the process to them] in the last three days than ever before in my life. 

I realize that all of those things are complaints.  But this was a very complain-y week for me so far.  I finally hit that wall where I'm sick of the hospital and I feel like no one's doing anything and I'm sure I could take better care of Ruthe myself at home anyway and I just really really need things to be happening faster.  It doesn't help that John isn't here, either.  I just couldn't find anything positive about Ruthe being in the hospital.  I asked John last night, in tears, why I couldn't just bring her home now with a little oxygen while she sleeps and her feeding tube for me to feed her with, and take her to the hospital once a day for an appointment with speech therapy.

There's a sign by her bed that has a checklist that needs to be completed before a baby can go home.
 Ruthe's looks like this:                                         The one in my head looks like this:
     [X] I am in a crib.                                                [X] I am in a crib.
     [   ] I am gaining weight.                                       [fatty] I am gaining weight.
     [   ] I have passed my car-seat test.                      [sure] I have passed my car-seat test.
     [   ] I passed the hearing screening.                       [whatever] I passed the hearing screening.
     [   ] My family is ready for me.                              [YES!] My family is ready for me.

She hasn't actually had the hearing screening or car-seat test yet, but whatever.  I don't care if she can hear me and her twelve pound head will fit safely in a car-seat, I just want to snuggle her.

But now I have my own checklist and here's how it's going...
     [X] Ruthe's nurses check on her as often as necessary, and they do respond whenever her monitors alert them of a potentially risky situation.
     [X] Ruthe is on the daily schedule for speech therapy to try bottle-feeding, and I can call to check the time of that appointment so I can be present to watch and learn.
     [X] Ruthe isn't going to remember how horrible the feeding tube is, and the doctors and nurses know best how to deal with a baby that needs special considerations.
     [X] Crazy people are much less likely to get past the new security-system to come in and injure or steal my baby.  Also, it's better people-watching.
     [X] The doctors are always there to answer my questions and listen to my concerns, but Ruthe's health care is their ultimate priority whether I understand their processes or not.

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