JaLia didn't get much of a nap Sunday. Just as I got her to sleep the surgeon came and took out the pacemaker wires. The nurses had tried earlier without much success and Jesse was fit to be tied ! The boys had a good visit with her and then Jesse took them back home. I gave her a big dinner and a sponge bath and fresh sheets. She sucked down a bottle and I hope she slept well all night. This morning I started to load up my car and I put the car seat back in, I sure hope that doesn't jinks anything. Then as I was walking across campus I saw 1 GINKO leaf on the sidewalk. I didn't see a single ginko tree or any other ginko leaves. I'm sure that was kismet....... If everything looks good with bodily functions, they will release us today!!

Holding her own

They took the chest tube and the groin IV out of JaLia this morning but couldn't get the sutures out for the pace maker so we are waiting for the surgeon to come and do it. Of course she just fell asleep so he'll likely come now ;0) We just need to wait for the return of "normal bodily functions" and see if she has a clear chest x-ray tomorrow and we hope we can go home. She is on little if any other meds and is eating just fine. They are not happy that her blood pressure is high but then she freaks out crying every time they try to take it so go figure!!!

We're moving on up

JaLia was doing so well Friday night that they could of moved her out of ICU but they didn't have an empty bed at the Heart center. Today she continued to eat, play and wean off from her pain meds. They removed her oxygen tube and the heavy arm cuff that protected her IV and she didn't bother anything. She has some jumper wires hooked up to her heart in case they would need to hook up a pacemaker and they have a chest tube sewed in to provide drainage. They are moving her up to the heart center tonight and hopefully they will continue to disconnect her from all the foreign matter. She has been happy and played all day, just two days out of surgery!!! I spent the day with the boys doing household chores and we made brownies, cookies and cupcakes to take up with us tomorrow.

Chica is chipper

JaLia is doing great. They have decreased her pain meds and she is awake enough to be pissed off. They have removed most of her IV's and she is drinking. We will try to give her some food soon and they may let her out of ICU tonight!! Ok so the banana yogurt wasn't a great choice but the girl likes her waffles. Jesse is here visiting and has volunteered to try out the new Temperpedic mattress at the RMH and let me go home and get some real sleep ~haha After many sleepless nights, too much caffeine and sugar and too little solid food, I went home for a needed break and a home cooked meal of Wal-mart rotisserie chicken ;0) I wasn't feeling well and it was great to be home again.

She's OUT

After the 12:49 summons to come down and speak to the Dr. I waited another 40minutes and then smiling nurse came by to say it everything was fine, JaLia was in ICU and I should wait at least 30-40 minutes more to see the Dr. and then they would be ready for me to see her. I told her if he was busy I could just go see my daughter but she wanted me to wait. Luckily he popped in a few minutes later, "everything went fine" he said. I went down to grab more coffee and lunch and 25 minutes later went to the Ped ICU to find her. The nurses wouldn't let me in so the janitor did ~haha They weren't ready for me and tried to kick me out but Dr Schamberger was with her. He said her pressure was back to normal levels and he was very happy. She is off the ventilator and woke up fine from the anastesia. I'm going to see her now.

Still waiting.....

So the surgery waiting area is a small area where all the families sit around and a nurse walks thru every hour, on the hour to give updates. It creates a tension...waiting for that time to get closer. Waiting for the smiling nurse to come through just so she can say "everything is going fine" and then walk away. Watching the smiling doctors come through with their coffee cups in hand. How many cups of coffee should a doctor drink in a day?? Watching them tell the other families how everything went great, or worse watching other families cry and being happy that it isn't you....and then feeling bad about that. I couldn't stand to sit THERE so I went down to the Ronald McD lounge. Nice atmosphere but then I'm partial to mission......very calming. They have COFFEE, food and very comfy chairs. 12:00 update Everything is fine. The doctor is ready for me now.....gotta go.

We're here

Yesterday was a long day.....we were suppose to be at Riley by 11am. After checking in and giving more blood they sent us off to lunch. Then we waited around and they decided she needed more chest x-rays. Then we waited some more. About 3:30 the OR nurse came in, then around 4:00 an anesthesiologist, and then the Surgeon showed up before 5:00 for a quick How-dee-do. The Ronald McDonald House, (RMH) told me they were full and there was no way I would get a room that night. I called around and found a place and as I was driving into the hotel parking lot I heard my phone buzz. I had left it on vibrate while JaLia was napping!!!!!!!! RMH called and said they had a room !?!?!!! So I called the hotel and asked if I could cancel, it was 6:10 but she said no problem. I whipped around and drove back to the RMH. Really nice, large facility, different group bring in dinner everynight but they have 2 kitchens with plenty of storage space for your own food if you want to cook for your family. It's very inexpensive and quiet but you share a bathroom with 1 other room and no TV or food in your room !! good-bye chocolate - NOT JaLia got a late dinner, a antibacterial bath and a big warm bottle. I put her down late for bed and she went right to sleep. I got about 5 hours on top of the 5 the night before but I feel good. We had to be at Riley at 6am this morning. Got her checked in and they gave her a dose of lala juice. Boy was she funny, I tried to get some pictures but video would have been better. They just whisked her off and told me that anesthesiology would have her the first hour and then the Doc would take 3-4 hours. So she should be done around 11:30?? They will keep her sedated for awhile so the body can do it's thing. She might even be sedated over night!

Operation date set

What is this thing??

She loves to watch it float.

Blowing kisses

I took JaLia to the dentist yesterday for her pre-op check. The dentist was amazed at how nice her teeth were and she got a clean bill of health. I will be driving up to Riley tomorrow for her pre-op preparations and then hopefully stay the night for her 6am visit to the OR on Thursday. We don't know what time the surgery is till tomorrow so I won't be able to post it but please keep her in your prayers. I will be staying at the Ronald McDonald house if they have a room available and hopefully she'll be out in like 4 days !!!!!!!1

2 weeks home

So after 36 hours I was feeling human again. JaLia has had difficulty getting to bed at night. I tried to move back her bed time by 2 hours each night. She slept fine at the hotel and they told me, complete dark and no night light. Here she just screamed till you picked her up. I was afraid to move her to the bedroom because the boys needed to sleep for school. We finally just left the light on in her room and she made it thru the night just fine. After 2 good days she caught a low fever with no other symptoms that I could see so I thought I had just pushed her too much and she was "checking out" of these strange new things happening to her. She'd perk right up and eat with gusto so I let her sleep and didn't think to take her to the Dr............................. She either bites her lip at night or just rubs her nose on the sheet too much but she has been waking up with a bloody face and I had to get darker sheets. She also has a terrible habit of wiping her nose with her sleeves which helps contribute to the raw chapped face..................................................... Wednesday we went for our visit to Riley. She does have a large hole which will need repair. I have to talk with the Dr tonight and see when they can get her in. He is thinking about 3 weeks. ******ooh he just called and they want her next week so I can stay on my original plan. She will stay in the hospital anywhere from 4-10 days and then need 2 weeks to recover. On top of that she does have an ear infection. We put her on antibiotics and she perked right up. Her vaccination record looked good but I've heard those are often falsified or just a weak dosage that really needs to be redone................................ She refuses to drink American formula so they said it was best to revert to the bottle and see if that helps. She sucks down water all day so i feel good about that. I've been giving her fortified cereals cause I knew kids don't get enough iron but I didn't know that gummy vitamins don't have iron in them so i need to switch those. I suck at transitioning kids from baby food to people food so i need to work on her variety. So far everything has been mush. She could feed herself, I need to get over the clean up issue ~hahaah Her only dislikes so far have been french toast and grilled cheese. I'm really careful not to give her alot of things that she could eat but have gobs of preservatives,sodium and other chemicals that she is not used too.