July 16, 2013

day 6. [ups and downs]

I knew it was coming. Ruthe's been doing so well, taking big steps forward. We were due for a bad day and some backward steps.

This morning was actually really good. I got to the hospital right after the shift-change at 8 because I wanted to be there when the cardiologist made their rounds. Ruthe was just hangin' out. Her numbers all looked good and she was breathing well. She had started to look pretty jaundiced yesterday, so I was surprised they didn't have her under any lights yet, but the nurse said she'd probably start them later.

Oompa Loompa baby.

With her bink - first and only time holding it in herself!

Everything went really well until around 10:30, when Ruthe started to throw a little bit of a fit and got her heart rate way up high. She was under the lights and was getting pretty warm, so I think she was just really mad about all that. And she didn't like the mask on her eyes either. She kept trying to scratch at it. I tried to get her calmed down a little, but the nurse decided we should sedate her so she could rest. So she stayed pretty calm until I left around 1pm.

All snuggled, with a fresh diaper and wonky blankets รก la momma!

I got a little bored watching her sleep...

 As I was leaving, there was a nurse setting-up to put in Ruthe's PICC line. She said they'd call me if there were any problems.

The PICC line is in her left [bottom] foot.

At about 3-3:30 I got a call from one of the doctors in the NICU who told me Ruthe had gone into a little bit of distress during the PICC placement and they'd had to put her on some respiratory assistance.  All I could really think was, "My poor baby girl, I should have stayed at the hospital with you!"  When John got home from work I had him call the hospital back to hear what the doctor had to say, since I didn't really understand very much when he was talking to me.  John's a lot better at talking with doctors and nurses.  He thinks of questions much faster.  I usually have to process things for about twenty minutes before I realize what I don't understand or what else I'm curious about.  So when John got off the phone he told me that Ruthe was still doing OK, but if she didn't get much better very soon, or got any worse, they'd have to intubate her again.

We really hate intubation.  It's the worst.  Mostly because it means I can't hold my baby girl, but also because we don't get to hear her cry.  And, lucky us, the doctors called back at about 6pm telling us they'd had to re-intubate.  But they had some more news:

Ruthe has a cleft palate.

She must think she's sooooo sneaky... hiding that from us for five whole days.  Well, someday I'll hide something from her for five days and we'll see how she likes it!

When John and I went to visit her tonight she was still under the jaundice lights, which means there's a mask over her eyes.  The breathing tube is taped onto her upper lip, and since she can't suck on a binky anymore she's chosen to suck on her bottom lip.  You pretty much can't see any of her face.  It make me a little sad to see her like that, but I know all of those things are necessary to keep her healthy.  John really hates the mask over her eyes.  He thinks it makes her look like a WWII burn victim.

This is how she looked tonight.  Nice and relaxed!

John gave her a really sweet blessing, which was maybe more for me than for her.  She started to move around a little during it, kicking her legs and waving her arms.  [Yes, my eyes were open, you really think I'm going to close my eyes for more than a millisecond around my baby?!]  At first I thought she was getting distressed and kept glancing at the monitors, but then I realized she probably just recognized John's voice and was responding, like she always would when I was pregnant and he talked to her.  It was a really sweet moment that we got to share as a family, and one that I'll always treasure.  I'm so grateful for the priesthood that John holds, and that we've been sealed together as a family for eternity.  I can't imagine having to be without John or Ruthe for even a moment, but I know that if we are separated during this life we'll have forever to make up for the lost time.

All-in-all, today could have been worse.  Every day could be worse.  It's not really that fun waking up in the morning with no idea how things will be once I get to the hospital.  [I guess I could call and ask, but I really prefer to look at Ruthe while anyone's telling me anything about her.]

I feel like we're living in Willy Wonka's glass elevator, that can take you any direction you choose - only we don't get to choose.  All we can do is pray and hope that tomorrow it will take us to a better place than we're at today.

[Or it could keep us right where we are, I'd be fine with that, too.]


  1. Sorry for the bad day syd, but you all will get through this soon! In a few months when Ruthe is climbing all over you and getting into everything, all this will be a faint memory. Love you and so many thoughts and prayers being sent your way!

  2. My heart breaks for you Sydney and John. I will be praying for your sweet angel!