the rest of surgery/CHB (this will be a long one)

now that we're over a week out, I really want to get it down while it's still fresh(ish).

I've got to start out by saying that the stay at CHB was like the weirdest hotel stay ever.  We got to know a few people on the floor with us and learn about some of the kids while we were in the CICU. We "went out" for meals mostly or brought food back to our room (once she was on the floor, not in the CICU). Norah especially liked the ham & cheese croissants from Au Bon Pain -- did you know ham is not "age appropriate" for a nearly 10 month old (she IS 10 months old now :) )? I learned that our last day there when I tried to order her a ham & cheese sandwich from room service.

I guess I should start at the beginning.
When we got to see her, she looked great. Yes, she had tubes & wires & there were monitors everywhere, but Norah looked so good. It was a little jarring to see just how good she looked. I guess I was expecting to see her more like after the Ladds, where she didn't look baaaad, but she didn't look good either. She looked so, so good. Her coloring was great, she was mostly comfortably resting (I'll get to that in a second) and we got word that her blood sugar was perfect, on it's own. It did spike a little and she got some insulin, but she fought that and eventually they stopped it for an hour & she brought her glucose levels right back into normal range.
***Did I tell y'all that we oped for a blood sugar/insulin study? Anyway she was in the test group, so she was able to get insulin when her glucose levels spiked after surgery, whereas a typical pedi patient would not. In adults, it's standard practice to give insulin after surgery to correct glucose levels. CHB & several other hospitals are 3+ years into a study to see if pedi patients have the same results as adults (easier/faster healing time)***


She was comfortable, but no longer completely sedated when we got to her. She needed to be sedated until the breathing tube came out, and that had to stay in until the oozing from her chest tube slowed down. She had a lot of oozing and ended up getting a unit of platelets around 6:30 on Wednesday night & then a unit of blood over night. The breathing tube came out a little after 7:30 Thursday morning. Oh, I was talking about the comfort level -- yeah, she didn't seem to be in pain, but she was uncomfortable and I think it was b/c of her position. She still sleeps all curled up in the fetal position most of the time and being stretched out, on her back, unable to roll didn't agree with her. Norah got A LOT of versed & morphine (more versed than morphine) over that first night and finally got to a comfortable spot around 11pm.

That first day, after surgery, there was a couple taking a tour of the CICU and we were asked if we'd allow them to look at Norah. About 2 weeks prior, they'd learned that they were expecting a heart baby (tricuspid atresia) and they were trying to prepare themselves. I was instantly back to being pregnant and hearing that my perfect baby, wasn't perfect. I cried. I cried for people I'd never met & will probably never see again, just b/c I've been in those shoes and I know how terrifying it is and how much you love your baby and how much you want it to be perfect and how afraid of everything you are in the beginning. We let them into Norah's room without hesitation and I pulled myself together.
They asked if she played.
I laughed. All she does is play and torment her sister and get into trouble and bring so much joy to every day. She's such a typical 9 month old that the question caught me off guard. She does everything.
She hugged her belly. He crossed his arms a little tighter and smiled.
I remembered being in their shoes and how hard it was to smile in those days. How hard it was to be excited about the baby when you didn't know what was going to happen to them. To be excited about anything really.
I told them that their baby was perfect. Not the perfect they expected, but perfect in it's own way and as hard as it all is, it gets easier once you get to know your baby and all that makes them their own special perfect.  I also passed along the web address to the babycenter heart board and told her how much of a help it was and continues to be for me while trying to learn all I can about Norah's heart.

with all her monitors & getting some blood - she does the vampire thing wrong.

pulse oximeter (just b/c I posted a pic of it after her Ladds :) )

if you don't donate blood b/c you haven't been asked, consider this my asking you.
 

She made it through that first night without to many problems. She was uncomfortable on her back, we got her settled on her side and she rested for awhile.
Her breathing tube came out a little after 7:30am on the 15th. A bit later her LA & RA lines came out (wires to measure the pressures of the left & right side of her heart), and we waited for her new crib & a her room on the floor to be ready.

We requested & got a "can't-get-out" crib b/c we know what she does at home and we didn't know what to expect while there. Norah liked being able to maneuver a little without the breathing tube and was able to drink some juice which she really, really enjoyed!
Day 2 was pretty uneventful, except for when Norah saw Jordan on the computer. I had the brilliant idea to set up skype on the netbook & asked my parents to get it too. Yeah. Norah climbed over me, the arm of the chair and across the netbook to get her sister. I had no idea how to stop her & honetly don't know how I got her down. oops.

after she rearranged her crib to her liking before leaving the CICU

resting comfortably

Day 3, Friday the 16th, had us up bright & early for x-ray. Her film was clear :)
Her chest tube came out that morning. Yeah, it wasn't fun. I felt so bad helping to hold her down for it, but was glad to get her up right afterward. I made all sorts of promises to her, like that I'd let her sleep how ever she wanted when we got back to her crib, in a sad attempt to make her feel better. She peed all over the treatment table. I wrapped her in a hospital towel (which, she loves. ALWAYS. She LOVES hospital towels, the kid is weird) and let her cuddle into it on the walk back to her room. Then, I let her nap, on her side, as long as she wanted. She kept waking to glare at me (I swear she would have flipped her shiznit had I repositioned her & thrown my promises right back at me) and then would snuggle in harder on her side and sleep. She took a good 2 hour nap.
Then... it was time for her sedated echo. Crap. I KNEW she was scheduled for it and I still let her sleep right up until 20 minutes before. On the plus side, she didn't fight the sedation and slept peacefully through the echo. I kinda played the she's so tired angle and asked that her post chest tube x-ray be taken while in the cath lab. I don't think the nurse in the cath lab liked me much after that, but she called upstairs & got it cleared so Norah got her x-ray while she slept. She woke up about .4 seconds after it was done & we went back up to her room for the night.

sans chest tube. pieced that I'm taking more pictures.

Saturday she let us all know what she was thinking. She was mostly mobile, and since I wouldn't let her crawl around on the floor, she had to cruise her crib. She tried climbing it, eating it, opening it - you name it, she attempted it. She was eating real food now and there was no stopping her. I managed to get a high chair for her and just seeing it made her want food. The girl was packing it away!
She got her pace wires out on Saturday with Mumma AND Daddy in the room. I think it made Daddy a little ill. He has no problem seeing other people in rough conditions, but seeing his baby girl doesn't agree with him (he's probably disabled pics while reading this post on his phone). And, Nick, I know you're not happy that I just shared that with the interwebz, but it's my blog, so there!
Norah really was a champ through it all. I forgot to order her dinner though, so she got a special ham & cheese croissant from Au Bon Pain, which she devoured. She ate a lot of food from ABP on Saturday & Sunday since we popped in while we wandered the hospital and got little pastry snacks.
Norah also decided to be a wild animal that night. She was crazy chasing me around the crib and just laughing so hard.

I see you!

I touched a button on the camera before you realized it!

hahahahahaha I'm a silly baby!

it's WAY past my bedtime, but the crib tastes good.

And Sunday, September 18th, we went home!
She had her last iv taken out. We took a quick trip to x-ray early in the morning after a horrible night sleep (hmmm, maybe b/c someone played until an hour & a half after they should have been asleep & THEN they were up for almost 2 hours in the middle of the night), and wandered around for awhile waiting to get the official word that we could leave.

HEY! I remember this game from last night! COOL!

Mumma, again with the camera?! Just play with me or I'll eat this crib again.

FIX MY FEET!  put the camera down &  help me, lady!

seriously?! You couldn't pack up before getting me ready to go?!

Yes, Mother, we're home.
PUT DOWN THE CAMERA AND UNLOCK THE DOOR. 

Actually, they were both really happy to be home and J kept giving N her doll & then passing her her own Princess Movie doll and telling her she loved her. It was really cute and sweet. Umm, yeah, they both wanted into the house, not to deal with me taking pictures on the front step.

 

oh, and one more, just in case Nick didn't really turn the pictures off when he got around to reading this:

right after surgery, she held her Daddy's hand. She is Daddy's little girl :)