surrender

Early this morning, I packed up and drove back over to the PICU. Rosemary got admitted last night for an infection in her Central line. While she has slept most of the day, I have been catching up on some knitting.

Over the past week at home, she's been growing and has been happy, but late last night I knew something wasn't right. She wasn't herself so we decided after several conversations with doctors to bring her back in. As of now, we don't know how long we will be here. All the while, I'm learning more and more what it means to surrender . . .

autumn light

Coming through the kitchen this afternoon and seeing the table lit up with sunlight stopped me in my tracks to take a breath and then turn to search for my camera. The rhythm of our days has really picked up. Even with being home after 18 days at the hospital with Rosemary, my daily schedule is slam packed with taking care of her needs. I need more moments like these, to be able to soak in something simple and beautiful around me. Here's to looking for some simple and beautiful things to lighten and brighten my soul each day.

Feeds

This little girl . . . oh my, she is full of surprises (and she's probably thinking the same about us, ya know!) I can hardly keep up with the fast pace of all the changes around here (yes, we're still in the PICU). We are increasing her feedings in her g-tube because, well, she is tolerating everything so nicely so far. She just took her first 15 cc orally, horray! So I've been busy writing notes up on the white board in our room, charting cc's per hour, trying to wrap my still somewhat baby-brain around all the math, conversions with her weight and ounces she is consuming!!

Now she's back to sleep, tummy full, and happily dreaming girly dreams!!

new gadgets

At the hospital, we sometimes have to be a little more creative at stimulating our babies. We’ve had some visits with OT and PT during our recent now 11+ day hospital stay. Together, we decided that Rosemary could benefit from a little mobile stimulation. So we strung a line over her bed between two hanging poles and hung a Stim mobile that was ordered from Live and Learn. We hung it this morning and she has enjoyed staring up at it all day, along with listening to the classical music playing from the local NPR station on our laptop. It does a mama good knowing that her baby is getting some good neurological stimulation even in the hospital!

She is recovering well from her Nissen and G-tube surgery yesterday. She is being fed today with her G-tube – currently at 10cc/hr and is tolerating it well so far. So things are looking up! pa-dum-pum

today I'm . . .

Sitting and waiting, and knitting, and blogging, thinking and praying for my little girl.

Rosemary is currently having Nissen surgery addressing her reflux.

we're still here

Hello all . . . we're still at the hospital taking care of Rosemary. She is doing much much better. No apnea episodes in over 24 hours! That makes me so happy!!! When we're in the middle of a clump of these episodes it sometimes feels like they will never stop. They seem to stop however when she reaches certain levels of seizure meds, so we're thinking they are seizure caused or related as well as enhanced possibly by her reflux. We still don't know for sure. She will be undergoing a Nissan surgery next week for her reflux which will eliminate one of the variables from these spells. We're hoping she will never have another "blue" spell ever again!

She has been sleeping a lot today and hopefully won't keep us up all night. Good-night all and have a safe weekend!!

we're back . . .

in the hospital, that is! Rosemary turned blue again on Sunday afternoon. She's had a rough couple of days, but she is doing MUCH better today!! Her seizure medication levels got low, and I believe (we still don't know for sure) that these apnea spells, where she turns blue, are seizure related. There still is a Reflux piece to this puzzle that we're still sorting out which we are trying to get resolved (meaning surgery) as soon as it is safe to do so. This little Bug-a-Boo is a fighter and tells us so well when she needs something.

our Halloween ~

Early afternoon, we brought the pumpkins into the kitchen. The kids picked out and drew their faces for their pumpkin, they were gutted and the carving began . . .

















. . . and a fun Halloween night was had by all!!