Happy Mother's Day :)

We're home!  It took FOREVER to get through discharge, but Seraph is home and everyone is sooooooo much happier now!

 Look - drinking from a bottle!!  I still can't believe it.  Can't wait to show her therapist tomorrow :)

 Peekaboo!

 The kids visited gma's house (they can't stop talking about the trampoline) while we picked up Seraph.  We barely fit into the van with everyone.

 Taking the girls' new wagon out for it's first drive!  The girls LOVED it.  The loved that they were facing each other, and loved seeing the neighborhood.  Strong Bear came with us and loved pulling the wagon. Then some neighbors gave us cake!  Really yummy fantastic cake - chocolate with raspberry frosting...it was nummy!

On the way home with the cake, I asked Bear if we should share or eat it all ourselves.  "SHARE!!!" - What a sweetie :)  (Don't tell him I called that...he thinks only girls can be called 'sweetie'.)

We're home!

A little bit longer...

Seraph was soooo happy today :)  Beautiful Rabbit and I visited (with Rabbit's newly inherited camera).  Seraph gave us lots of smiles and sometimes ignored us to play with cool toys.  Later she got sleepy and wanted mommy to hold her.  She fell asleep but I accidentally woke her up when I put her down in the crib.  Uh oh!  That made her mad and tired and wary.  The nurse saved me by giving Seraph a bottle of Pedialyte.  We gave her kisses and left.  She only cared about her bottle.  She didn't even look at me when I left.

I'm loving this new bottle thing.  Seraph is really comforted by the bottle.  She's taking 1/2 of her feeds orally now...and the other half via IV.  She only gets meds thru her g-tube atm.  They're working up to full feeds slowly.   The new goal for coming home is Saturday...ish.

Le sigh.

Update on Seraph

They restarted food to her tummy today.  She's getting diluted Pedialyte thru her G-tube.  20ml/hour. Yesterday they had to give her a folley so they could distinguish between the stool and the urine in her diaper.  They had to put a brace on her leg so she wouldn't pull out the folley.  She hated being less mobile.

They just took the folley out.  She's only had one bad diaper today.  If she tolerates getting fluids to her tummy today, they'll try feeding her formula tomorrow.  If everything goes perfectly, she might be able to come home late Thursday :)

She likes chomping on stethoscopes so much, that someone found her a play-doctor kit. 

Yesterday when I visited, she started screaming as soon as she saw me.  She had sooooo much to tell me.  She wanted me to hold her and would NOT do anything but scream unless I held her.  She was soooo tired.  She prefers to sleep flat, but wouldn't let me put her down to take a nap.  I think she was scared that if she fell asleep, I wouldn't be there when she woke up.  Smart girl.  I finally rocked her to sleep.  

and, yes, knowing she'd be out for several hours, I put her down in her crib.  She didn't even stir.  She was THAT tired.  Her daddy is with her right now.

Out of the PICU

The transfered Seraph out of the PICU.  She is still very sick, but they feel like she's stable enough to be out of the ICU.  They haven't voiced any concerns about her heart so far.  They just put her back on her diuretics (the meds that make her pee off extra fluids).  They haven't started her formula yet.  She's still having diarrhea.

The silver lining in this whole thing is that she's discovered an instinct to drink Pedialyte from a bottle.  She drinks the whole 2 ounces (that's all they're allowing her to have orally) in just a few minutes.  This is a HUGE step forward.  Before this she wasn't taking anything orally.

Her team is doing everything they can to protect that new-found drinking instinct.  Hopefully she'll come home drinking her daytime feeds from a bottle :)

I'm off to see her - please keep her in your prayers.
xoxo

I can't stand being away from--esp when she's hurting.  It's a mom thing.  Hard wired into my brain.


They just put in a picc-line.  Her primary doctor and I have come to an agreement concerning the way her care will proceed.  They took the IVs out.  Yesterday she had both hands taped up and couldn't hold anything.  Also, they were drawing blood every 4 hours (pokes!).

They're worried about her kidneys.  Her diarrhea has calmed down and she has started peeing again.  Her stats are returning to normal.  These are good things.  She's headed in the right direction.  I think she'll be away for a week.

Serah in the PICU

Monday Angel caught a stomach bug.  She shared it with the rest of the family.  We tried to keep Seraph isolated but she'd already caught it.  Then we tried to keep her hydrated with extra Pedialyte.  But she had more output than we could safely rehydrate at home.

We did keep her hydrated enough that we were able to drive to the hospital ourselves instead of taking an ambulance.

She's unhappy.  She's already lost her first IV.  The second IV isn't working very well.  So, they've already put in a third IV.  Both hands are all taped up.

She's going to be OK...but her mommy is sad.  I don't want to leave her here.  ...and she doesn't want me to go.  :(

Please keep her in your prayers.  Pray that she'll rehydrate soon and that she won't catch anything while she's here.  Thank you.