Wednesday, March 27, 2013

The New "Normal"

Tatum Update:  Tatum overall had a good day.  It started out fine, her regular 4:30 am wake up time.  I do not know where she got it in her head that this is when the day should begin, but she does and so we just go with it, because what Tatum wants Tatum gets:)  We worked through the routine and then she usually goes for about a two hour nap so I can go on warp speed and straighten the house and get some things done before she and Hilary wake up again.  She took a little longer than normal getting back to sleep, turkey.  Then she was pretty happy when she woke up.  I was able to talk Hilary into the sort of matching outfit so I could take a cute picture, miracle!  The day was off to a good start.  So good that I decided that we would go run some errands.
 My mom is here so I could leave her in the car with the girls while we went to a few stores and other errands.  We got to Pleasant Grove and Tatum started cranking a little.  She does not love her car seat.  The more she cried, you guessed it, the more the secretions multiplied.  I could hear her gurgling.  I pulled over and gave her a quick suction then we carried on to Provo.  We did a quick errand there.  I decided to stop off at my doctors office so that they could hear her because she sounded horrible.  I wanted them to see what I meant by SECRETIONS!  When I walked in the receptionist was like "Wow Tatum, you don't sound so good".  We got to a room and she sounded horrible and her sats were at 83.  I got her on the table and suctioned her out really good and by the time the doctor came in she was at 95.  So they really didn't get to hear what she sounded like.  Grrrr.  They really didn't have a solution either.  I think this is part of our new normal, I thought.  No one will want to sit by me at lunch when they hear us suction our sweet delicate princess.  Oh boy.  By the time we were done with our visit her breathing sounded better than mine!  We went home and I started making dinner in various stages. (That's right, I said I was making DINNER, all by myself)  Tatum was pretty cranky this evening, just not quite herself.  I hope this is not her new normal.  She did seem to have pretty consistent ticking today, so hopefully it will mellow out tomorrow so she can feel better.   As the evening progressed, I felt a wicked headache coming on.  The kind that makes you feel like you are going to throw up.  It is still just killing.  I imagine there are lots of days that Tatum has a total headache from seizing all day.  Poor little thing.
I just finished reading Stephanie Nielsen's book, she is the lady that is from Provo and her and her husband were in a plane crash and she was burned over 80 percent of her body.  It is an excellent book.  I felt like I related with her in some way.  I do not compare my trial to hers in any way.  Hers seems so much harder.  I just loved the way that she missed the mundane things of motherhood that we all complain about like doing laundry, cleaning, tying little people shoes and making dinner.   She talks about how she wished that she could do those things herself, but instead she had to watch her husband try and do everything for such a long time.  I feel like I am incapable of doing so many things that I used to do, but I am trying to be OK with it.  One day I will be able to do everything again, and I won't want to be able to, is that clear as mud?  I just know that our time with Tater bug is short and as hard as it is to watch her struggle I just don't want to move past this new normal into the worse new normal that lies ahead.  Today when I was getting her dressed and I realized that I had a little dress for Hilary that kind of matched I remembered a discussion that I had with Halea a month or so before Tatum was born about how I was going to have to really hold back and not buy all of these cute matching outfits for the two of them.  It makes my heart hurt to know that Hilary won't have that little sister to match outfits with.  I think that my raging headache is getting the best of me.  I better try and get some sleep while my alarm clock is sleeping too:)

1 comment:

  1. Cute outfits! I can tell that Tatum has grown a little since you guys started the feeding tube. It is such a blessing she is having time to learn and grow here and be nurtured by all the love you guys have for her. Glad your docs are working closely with you to help through all the medical side of it, too.