Still no room in the stepdown area. But they moved her to another area in the ICU, and left her O2 tubes off once we got there.

3:30 pm – She ate another 1.5 oz (what she’s supposed to) and a nurse came over to discuss her care once Emma gets home. She also removed Emma’s incision tape.

5:30 pm – A room is finally open in the stepdown area, and she’ll be moving over there in an hour. So Miriam will be sleeping with her in the hospital tonight. And, the doctor says he doesn’t see any reason she can’t go home tomorrow! So we’ll see, but this might be her last night in the hospital!!

10:30 pm – Well, after a four hour wait in the hospital, Emma is NOT moving out of her ICU room (due to an emergency room patient), but everybody is still saying she’s scheduled for discharge tomorrow. The paperwork is even all filled out, just waiting for a date and signature.

They’ll be keeping her in the hospital until they’re sure she’s gaining weight normally – sounds like it’ll be at least another 4 or 5 days.

I think as soon as she’s feeding well they’ll be moving her out of ICU – maybe this afternoon or tomorrow (just a guess)?

10:00 am – Miriam just called from the hospital. She said Emma looks really good. She even cries normally now! We’ll probably get tired of that pretty soon, but for now it’s great to hear her being loud like a normal, healthy baby.

They’re weaning her off the blood pressure medicine now, and will try to start feeding her this afternoon. If all goes well, they’ll be moving her out of the ICU tomorrow!

2:30 pm – First feeding: 11:00 am. She had 2 oz, and wanted more! They’ll be feeding her every three hours now.

The nurse says she’s really loud when she’s crying now! We haven’t been in at the right time to hear it yet (still 10 minutes/hour), but Miriam says the gurgles and squeaks are gone.

6:30 pm – Miriam feed Emma a bottle at 5:00 today. She’s really doing good. She had her last dose of morphine this morning, so now she’s on Tylenol when she needs it. Very content to sleep and eat.

At 10:30 this morning, Emma’s ventilator tube was removed. She apparently didn’t feel like breathing directly afterwards, so they gave her some medicine, and she’s now doing fine.

Now that she has the tube out, she can make noises, but Miriam says she’s not crying – just making her little noises. They’re giving her some medicine for her sore throat – that tube must not have been very comfortable.

This is the first step to releasing her from ICU down to a normal room. She’ll still need her chest drainage tubes removed and feeding started before that will happen. Even then, she’ll probably be in the hospital for another week or so.

The nurse says that Emma actually started waking up in the night, but the doctor wants her to have lots of rest, so they upped her meds and she went back to sleep. In the morning, her electrolyte level was low and her kidneys weren’t doing as well as they’d like, so they put her on dialysis and added electrolytes via IV. Didn’t last long though, she recovered nicely and was soon back off that machine.

We meet back at the hospital at 12:00, and Dad says goodbye, and leaves for Siloam Springs. By now her sleepy meds have been pulled down, and she’ll move around if you touch her. She’ll even open an eye if she’s jostled as things are adjusted. So Miriam and I grab lunch and then head back to the apartment to rest a bit (and I start this page).

Back at the hospital at 5:30, the nurse informs us that Emma is now breathing on her own! The ventilator is still there to help, and just in case she has trouble, but her lungs are doing the work. She was also a lot more active while we were there. It was nice to see her moving around a bit more, but it was also hard because she’s obviously not comfortable and not happy. We visit again at 6:30, and then go out for dinner while the shift change happens from 7:00-8:00 (no visiting during this time).

At 8:30 the night nurse (Brandi) says everything is going well. They have pulled back her morphine to continue moving her to being on her own, which has something to do with why she wasn’t as happy last time. Fortunately, there’s some other medications Brandi is able to give Emma, so she’s much quieter this time.

Everything seems to be on schedule to completely detach the ventilator tomorrow morning. If that goes according to plan, she may even start re-learning how to eat tomorrow evening! Supposedly that’s a pretty big deal, it can be hard to get them to start again.

So here we are at 9:30 back at the apartment for the night – Miriam will be going back in the morning while I try to catch up on some work.

More news tomorrow…

. . . and it turns out we are supposed to come this early just so the hospital can get started on their preparations. So after an hour and a half of “Get Fuzzy” comics, the nurses come in and announce that it’s time to go!

After a lot of waiting, it all happens very quickly. The nurse scoops Emma up, leads us to the Family Waiting Room (a private waiting room for during sugery), and tells us to say bye-bye for the operation. And then she’s gone, with a promise from the nurse to come back every hour and tell us how things are going.

Hour 1: We settle down for the wait, mostly reading books. We were told that preparation takes several hours, so it’d be awhile before the actaull operation. Then a head pops in-an hour has already passed, and she’s sleeping nicely, hooked up to alll the needles and tubes she needs (past one of the minor risk points), and they’re about to start the operation! Seems to be going well . . .

Hour 2: More waiting. Dad and I start browsing through house polans, and Miriam is reading some more “Get Fuzzy.” Again, it doesn’t seem like another hour, and the nurse is back, telling us that the hole is patched (bringing a sample of the material-looks and feels like cotton), and that they are evaluating the miss-routed veins now. And Emma’s doing fine!

Hour 3: The cards come out and we start a round of Threes. Mid-way through we decide to grab some lunch, so Dad and I run down to the hospital cafeteria, get some sandwiches, and come back. The nurse returns and tells us that Emma is finished with the main part of the operation, and is already off the heart/lung machine.

Hour 4: More waiting until finally, around 12:00, we’re told Emma is now resting in the ICU, and we can visit! The surgeon comes in and tells us that everything went well. The patch was first put on over one of her valves and had to be moved (tiny heart to be working in!), but they got it fixed no problem. The two veins that are incorrectly running from the lungs out and then back to the lungs were too high and too small to be fixed, so that was not done. She may be ok, or she may need another operation at 4-6 years old – definately not a big problem like the hole. After closing things back up and getting her heart going again, they checked the heart again, and the hole is closed! There’s still a very small hole left, but he said that usually heals on its own in 3-6 months.

First Visit: Emma is still on a ventilator (lung machine) and has needles and tubes all over for nutrition, morphine, sleepy medicine, drawing off excess fluids, etc. She’ll stay on the ventilator and sleeping at least through the night. She has her own private nurse, and is doing well.

We visited her a couple of times (10 minutes per hour maximum allowed), and she’s sleeping soundly (not that she has much of a choice).

Dad takes us out to eat for dinner, then we head back to check on her after the nurse shift change at 8:00 pm. She’s doing fine, so we leave our numbers with the nurse, and head back to the apartment for the night.

Next, we meet with the cardiologist, the anesthisiologist, and the surgeon. They are friendly, and they talk us through what they’ll be doing and what to expect.

The Surgeon is very quiet and serious. He tells us the surgery will last about 4 hours total, about 1-1.5 hours on a heart/lung machine, and that there is a 2-3% risk of major problems. This is a common surgery for them.

We’re done by 2:00, and go back to the apartment to rest.

Kyle and Laura Rogers are in town for their daughter’s eye surgery, so they come over for supper around 6:00pm. My dad arrives about 7 o’clock-he wants to be here for the surgery tomorrow.

Emma had a good ride down in her car seat, sleeping most of the way. Upon arrival, the key under the mat at our apartment was missing, but we eventually got in. Miriam found a great deal on the itnernet-a fully furnished 2-bedroom apartment for $60/night, and turns out it’s a really nice place-just like those appartments across from WalMart in Siloam Springs, but a little fancier (balconies and a golf course).