Sunday, February 16, 2014

#9 - Journal Entry from December 25, 2010

Jason and I spent some time with Bryer in the wee hours of the morning.  It makes me want to cry to tell her 'Merry Christmas.'  A baby's first Christmas should not be like this.  She did open her eyes to little slits this morning though!  It didn't last long and her poor little eyes are still so swollen, but she made her eyelids raise just enough to count it for her first waking up!  It wasn't the sweet strengthening of 'my eyes meet her eyes' moment I was hoping for, but I will take any bit of reaction from her, especially it being Christmas morning!  She went right back to sleep and my mom came to sit with her while we headed over to Jason's parents for when our kids woke up.  I'm still not comfortable leaving her with just the doctors and nurses to watch her.  They are strangers to me - and to her, so I am so thankful for those that sacrifice their time and sit with her when Jason and I leave.  I hate to think of it as a blessing, but my mom has been off work after a surgery she had.  The timing has been perfect for her role to just go and sit - a way for her to help while she is also recovering herself.  I am so thankful for that specific timing and circumstances of things.   

I touched Bryer softly to tell her good-bye before we left.  I snuggled my shirt near her face so she could have my scent with her.  I hugged my mom and then walked down the hall holding Jason's hand, just sobbing.  I told him, "No one should ever have to leave their baby on Christmas morning."  How can my heart be in two places at once?  Our older kids are big enough to remember Christmas and need us there, but Bryer is so fragile right now it's hard to pull myself away from her.  I feel so physically  and emotionally torn each time I leave either place.  Still in the back of my mind is always the thought that law enforcement could cut us off from either place at any time. 

We got there in time to wake the kids up and see their excitement for their Santa gifts - including an outdoor basketball hoop that our 2 older boys wanted and flashlights that our 2 younger ones hoped for.  I am so thankful for Jason's family pulling lots of loose ends together - the stockings, the Santa letter, and making the drive to our house to get the things I already bought.  The kids laughed at the letter Santa left for them.  They read that Hunter's practical joke of salt under the frosting was actually a treat for Rudolf - like a salt lick for him to munch on while Santa went to work.  Again, there are no pictures of our morning.  I soaked it all in with kids on my lap opening presents, filling up my spiritual cup with just being in the moment and not worrying about the camera.  I probably wouldn't have been able to see the lens through my tears anyway.  Jason and I received a letter from a family member, sending us to look for a hidden envelope in the house.  It contained money for us to help pay for attorney's fees.  I am so touched by all the little details that have been accounted for.  It's not the amount of money that makes me tender, but the thoughtfulness of all those around us.  It makes me wonder what I have done to be so blessed in the middle of all this heartache. 

By late morning, Jason's siblings and their families showed up.  His brother and wife had a baby boy just a month before Bryer.  When they walked in I asked to hold him, something I have not been able to do with Bryer for a week.  My arms ached for my own baby and my nephew was the closest thing.  When I asked to hold him, I wasn't prepared for the flood of emotion his little 3 month old body would have over me.  I held that baby boy and bawled as I swayed back and forth with him, my shoulders shaking with my sobs.  He filled a need in my heart so deep and so great, it was an answer to prayer to fill my arms.  Did God plan to send my nephew and Bryer to our family, so close in age, for this purpose?  Did He know I would need another baby to fill the hole in my heart, even if it only brought relief for a short time?  That relief was needed so badly for me emotionally and I felt temporarily consoled holding him.  It brought a new wave of assurance for me to continue to be strong.  Such a sweet little blessing exposed in that tiny baby boy! 

As all Jason's siblings and families arrived, my mom called from the hospital to tell us the doctor took Bryer's breathing tube out!  It's another Christmas miracle!  She had been weaning down nicely, but I didn't expect to have them take it completely out already.  I have so many mixed emotions since we weren't there at the hospital to see her progress through that, especially after waiting so long for even a little breakthrough.  Just because I wasn't there, doesn't mean I don't want her to progress.  Like I said, my heart aches to be in both places at once. 

In the afternoon we went back to the hospital to be with Bryer.  There was a wonderful family there serving a hot meal.  They lost their little girl years ago, about the same time of year.  As a family tradition they serve food to others that spend their Christmas at the hospital.  It was so nice to visit with them and feel their sincerity and service.  As we ate, I had a substantial thought, "Someday I want to be that person for someone else." 

A few hours later I got a text from Mandy - the one growing her faith by praying for our family.  Her nephew, about Bryer's age, was being admitted to this same hospital.  The baby had come down with a bad case of croup.  As soon as I got the room number from Mandy I went to visit with her sister, the mom of this baby.  God sent me someone who appreciated a short visit, a hug, and to offer my prayers for their family.  Right there in the middle of my own trial - to the same hospital, not far from where Bryer was staying, God knew I would feel better by serving.  He didn't wait for my trial to pass or get easier.  He allowed me to serve and provided the exact way to make it possible.  My spirits were lifted and I felt I did some good in the world today.  In another element, Mandy's text said she wished she could be there with her sister.  Mandy couldn't get there in time, but God could use me.  I don't know that I did as much good for that family as they did for me, just by allowing me to be there.  It feels good to be an instrument in the Lord's hands.  Somehow I feel that this is only the beginning of experiences maybe I could be a part of. 

This afternoon the nurses were lightly touching each of Bryer's arms and legs to see if she would respond...  and she did!  She hasn't opened her eyes again since this morning, but her little extremities will pull back from the tickle they give her.  I'm so impressed with this little fighter we have on our hands and feel so blessed to be her Mom.  She has responded more to voices and singing today too - noted with a slight heart rate change and by watching the EEG monitor for brain activity.  She is doing great breathing on her own... one more thing checked off the list of the things the doctors said may be a struggle.  She is surpassing all their expectations one by one.  She is still on 2 seizure meds and under the warmer to make sure she can maintain her own body temperature.  That's one of those things I wouldn't even think of as one of our body's responsibilities, but her tiny frame is working so hard that we don't want her to waste energy trying to keep herself warm on top of everything else.  They rotate her body from side lying to her back, and then to her other side.  They are very careful when moving her - for the physical touch aspect, as well as trying not to bother all the monitors she's hooked up to.  They have used a floppy, multicolored stuffed animal frog to prop her arm over as she lays on her side, or under a knee while she's on her back - however they situate her and make her look comfortable.  She is surrounded by cards and pictures taped to her bed. 

Another big step for her was the introduction of my breast milk!  She's been getting the essential nutrients from a solution the doctors said would be easier on her body and not require so much energy from her digestive system.  My breast milk is now being pumped through the feeding tube through her nose into her tummy.  It's there and it's something of mine I can give her to help her be strong.  When our touch and voices have to be so soft, it's comforting to know that full fledged, best-of-the-best, 100% home grown breast milk is now flowing through her digestive system and carrying all those nutrients to her other body systems.  There's no holding back in that department.  As healing as it may be to her body, it's also very healing for me to know that her body is accepting the power of it.  I've been side by side with Bryer through this - pumping all hours of the night, in the car, near her bedside, wherever I can find a discrete place with a plug-in, just hoping that she would get to a point to be able to accept this only gift that I can give her, storing it up in the freezer for the right time.  Now I know that all that effort is now where it was intended. 

Our attorney has informed us that when Child Protective Services (CPS) is called in, they have 3 days to hold what they call a Shelter Care Hearing, to see if there is a significant reason for the children to be in the system.  With the Christmas holiday and the weekend it will be longer than 3 days.  We are scheduled to go to court for the hearing on the 27th.  I realize that nothing has changed from what we would normally be doing - the 4 older kids are with Jason's parents and we are able to stay by Bryer's side.  That is a huge blessing and a tender mercy straight from God!  But, the fact that our kids are considered in foster care is very unsettling.  We can't take them anywhere or be alone with them, which feels like we've been violated.  At anytime, CPS could take away the 'visitation' we have with our kids for whatever reason.  I'm ready for our hearing, but I am not looking forward to making the trip back home 2 hours away and be away from Bryer all day long.  So far I have been torn between 2 places - Bryer's hospital room and our other kids.  Now I will be torn between 3. 

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