Like a flower

Tsvetomira. The name means peaceful flower. When we decided to keep her birth name, we had a number of reasons for doing so, one of which was that we thought the meaning was simply perfect for her. Why do people enjoy flowers? [HINT: it's not because of all the amazing things they do.] It's because they're lovely to have around! They can just sit there, and you're glad they're there.

However, we're noticing another reason why it's an appropriate name: almost every single day since we've had her we've noticed her unfolding - almost like watching a time lapse camera of a flower blooming.

There was the last day in Sofia when I noticed that she'd made a small movement with her arm.

Increasingly over that week we'd also noticed her gaze becoming steadier and longer. She doesn't have ANY of Krassimir's challenges with making eye contact!

As we entered our first few days of our stay at Gillette, we noticed that we could no longer put the little pink cloths Leah had made into her hands, because her hands were so much looser that she could not keep hold of them for very long.

A photo from Daddy's phone on January 31. She's still got the pink cloth, but you can see her fingers loosening!

Or there was this past Friday morning when she lifted her head off the pillow! I could see completely underneath her!

Later that evening, when I returned to the hospital after sharing supper and bedtime at home with Matt and the kids, both her nurse and the charge nurse independently came excitedly over when they each saw me, and told me the good news - they'd seen her straighten both of her legs at the same time!


Tonight I walked in to hear them all excited about her arms - she was moving both of her arms as though she was grabbing for things!


It may not look like much, but for a girl who we knew as motionless, it's rather incredible to see.

Tomorrow is surgery day for this little one. No one we talk to seems particularly concerned. Despite her severe spinal/skeletal deformities, every test of the systems inside (GI tract, lungs, heart) all appear to be correctly formed and doing their job. It's still always a little odd to have any one of our little ones under general anesthesia.

She will be having a g-tube inserted (a tube that goes through her abdomen directly to her stomach. We will still feed her through a tube like we've been doing up to this point, it will just go straight into her stomach instead of having to go through her nose to get there.) The g-tube should be much more comfortable for her than the one in her nose.

There is also a good chance they will be putting in a port. As a little girl who's got a good number of blood draws, and likely hospitalizations in her future, having a port will help prevent her from feeling like she's being used as a pincushion. After a failed attempt at getting a new IV put in last night, I'm all about a port!!

Matt and I have come to the conclusion that we have three goals for this little one's life.
1) that she would know she is loved.
2) that she would be as comfortable as we can make her (without being so medicated that she isn't able to achieve goal #1 to her fullest potential)
3) well, number three we're asking Mira herself to set! She's surprised us in so many ways already, we don't want to box her in.

Both the g-tube and the port fit nicely within our goals for Tsvetomira, and although any surgery is not something to be taken lightly, we are both very optimistic about the benefits for Tsvetomira.

If all goes well, she will be able to go home on Wednesday.

~~~

Some of you have been asking about Matt. He's keeping food down again, and after having me take the Saturday night time shift, we both felt he'd been past it long enough that he could spend the day with Mira and I got to be the one to first take eight children to church, and then to spend the rest of the day until just before bedtime with them. It was good to be home; it will be even better when I can be home with everyone AND my husband and our Mira.