#11 - Journal Entry from December 28, 2010

Today was the day I've been waiting for.  I got to hold my baby girl!  They have moved her out of intensive care and she now has her own room in the regular pediatric unit.  There is a comfy rocking chair next to her hospital bed and one of those uncomfortable chair/beds on the other side.  It's not home, but it's one step closer!  She snuggled in and melted right into my arms like she had never left.  I can't describe the feeling with only a pen and paper.  My heart is full and complete again.  I can't help but think that the scent of my shirt by her for the past week has helped tide her over until she could really feel that close to me.  She feels like a big newborn in my arms, swaddled in blankets.  She still has her feeding tube and a couple monitors just for precautionary reasons, but other than that she is cord-free!  No warmer above her bed.  No breathing tube.  No EEG probes attached to her head.  In fact, they have been replaced by a pink bow, which kind of goes with her painted toe nails hanging out of her blanket with one of the monitors on.  She is a tiny ball of huge miracles!  We taped her picture back up on her new bed.  The one with our themed quote on it... 

"We are not human beings having a spiritual experience. 

We are spiritual beings having a human experience." 

With this move to the new unit I will be sleeping in the same room as her since she doesn't have her one-on-one nurse anymore.  If we need something one of the nurses from the nurses station outside her door will come in to help.  That's a big shift from having her own nurse right outside her sliding glass door watching her so closely.  It's comforting for me to have more time with Bryer and respond to her as my instincts tell me instead of relying on a nurse or doctor to tell me what she needs.  I've been forced to put my 'mother's intuition' on the back burner for long enough.   

Bryer had her suck and swallow study done today.  I was able to carry her down to where they do the x-ray.  It's the first place I have walked with her in over a week.  It's such a good feeling to just go for a normal little walk.  Who knew that would feel so great?! 

The hospital therapist put Bryer in a chair that held her propped up.  It looked like such an un-natural way for her first bottle feeding, but I understood the purpose.  They had a bottle full of barium so they could watch the liquid moving on the x-ray as she sucked.  My mom and I stood in another room to watch the monitors.  The doctors had told the nurse they didn't think she would pass.  There's a lot to concentrate on with the suck, swallow, and breathing synchronized all at the same time.  They fully expected her to aspirate into her lungs, which could cause issues with breathing or pneumonia later if it is left unchecked.  I was reminded that as we sat around the table of doctors a week ago they said there was a chance she could be in a very compromised state the rest of her life, including the possibly of a feeding tube.  Obviously they don't know what a miracle baby we have because she passed her test wonderfully!  Her mouth did get tired quickly and then she just bit on the nipple, but she kept a good rhythm of suck, swallow, breath.  One more big step for my sweet baby girl!  The occupational therapist came in today and showed me some way to stretch out her mouth so we can slowly begin to feed her with a bottle.  She is still taking my breast milk through her feeding tube so it's taking a lot of my time to pump and then hold her and rock her since it doesn't all happen at the same time.  Someday soon...  Someday soon... 

Here's a side view of her sucking on the barium bottle (the black in the upper left)

Jason and I are still using the sleep room to keep our things and for the occasional night that Jason stays at the hospital.  Now that Bryer is making such great improvements he's able to spend more time with our 4 older kids.  It's such a blessing for his job to be as flexible as it has been.  I don't know how else he could have taken almost a week and a half off work on such short notice.  His business partner has been a great support for our family and has encouraged Jason to just come back as he feels our family is ready.  I am thankful to have a husband that takes care of that side of things while I care for Bryer and her recovery. 

Always in our minds is what happened that Sunday when I found Bryer not breathing.  My time and internet use is limited since Bryer is getting more interactive with us now.  The internet seems to be inundated with articles and reading on false claims of Shaken Baby Syndrome.  Our extended families have started doing research also.  I don't understand it all, but I've started making a list of other possibilities.  It makes me sick to my stomach as I read about all these other sad stories, so I can only handle a little at a time.  I don't even like to say or write the words Shaken Baby Syndrome, so from now on I will just call it SBS.  You'd think that in a hospital full of doctors I could ask questions of what I am finding, but it's scary to me to even talk to them.  I already know what they think.  They are not interested in the truth or helping me find the cause.  They feel they already have, and may fully use it against me.  In our state criminal charges can be filed anytime within 5 years of the alleged crime.  We have also learned that a case with Health and Welfare is completely separate from a criminal case.  They could choose to file criminal charges on me at anytime. 

Today I passed by a TV on my way to the bathroom.  I caught a glimpse of a guy's mug shot with the newscaster reporting on the allegations.  I looked at the guy's picture long enough to see his long oily hair, rough skin, tattooed neck, and a couple facial piercings.  I try to be non-judgmental, but sometimes thoughts come before I realize I'm judging.  For the first time, the thought entered my mind while seeing someone like this on the news, "What if he's not really guilty?"