New Room, New things

Today, Lily got into her new room. She is sharing her room with a little guy that had heart surgery on Monday and is only 9 days old. He is tiny. She has been in and out of sleep today. She has had periods of fussiness and Jared and I can tell she is uncomfortable in some way. She is being given tylenol now for pain. She is getting it about every 3.5 hours. We sat her up in bed, this is the first since she went into surgery. She was not happy and wanted to be held her favorite way. We tried that and it didn't work becuase it put pressure on her incision and little holes where she got some things removed today. Our nurse, Alexis, who has been super nice all day and leaves at 7:30 for the weekend :( suggested we take her for a ride in the wagon. It was an alligator wagon and we laid her down in it and made circles on the floor. (Most of the floor is ICU and we couldn't go in those areas). We are going to try to sit her up in it later. She needs to be able to do normal activities upon being discharged. Her doc, Dr. Huddleston, came around at about 5 pm today and said that she will get a echocardiogram (not her fav) and a chest xray tomorrow and if things look good she will be discharged on Sunday. Good Thing!! She already has an appointment with her ped doc on Monday for a follow up! The worst part for her parents are the sleeping accomodations, when its our shift sleeping in her room and seeing her uncomfortable. PS: We think she may be getting a tooth on top of all this!!
Take care and thanks for all the prayers! They are working so far.

Awesome news!

Man Tuesday feels like a million years ago. In case you didn't know thats when we arrived here. Currently, Lily is amazing everyone as she progresses as double speed. We were just put into our new room for her to finish her stay here at Childrens Hospital. She is in Room 4 in 7 West. This room is a little more comfortable for everyone, especially Lily who has now had most of her tubes and everything removed. Just a few basic IV lines are in to administer drugs as needed. The best news of all is that we thought we were going to be here through Tuesday but it sounds like she may be released as early as Sunday, with a possibility of tomorrow if all things continue to go well. Pictures will be coming soon as she is our smiley happy baby again.

The Owen's

last night

Last night after dinner, Tara walked back over to see Lily as she was still awake. She was fussing earlier so they gave her some morphine. She was calm when Tara got there and they read books, watched part of her DVD and sat together. We are thankful this hotel is so close and connected by a crosswalk. Hopefully, today she gets moved to her room and Tara and I will be on shifts for staying with her in the night. She will get to move if she didn't require the temp pacemaker during the night and this morning. She didn't need at all yesterday afternoon. She gave us some smiles and laughs yesterday too. Tara and I learned how to change her dressing and saw her incision. We weren't sure we wanted to be a part of that so early, but the nurses advised us we will be doing it by ourselves soon. It actually looked great. I think there were probably about 15, without counting them.

We will update any new news today!

almost out of the CICU

Lily is progressing nicely. Her temporary pacemaker has been removed and she is pretty much self sustaining at this point. SHe has a super strong antibiotic that is killing any germ that comes within a 10 ft radius of her. I just left her room to come into the waiting room to write this blog and she was sleeping as she gets ready for game #3 of the cards vs cubs. I think I am gonna grab a six pack of pedialite and her and I are gonna sit there and watch the game just like we were at home. Don't know when we are going home yet, but it looks like it could be sooner than we expected due to the speedy recovery.

Lets hope the rest of the process goes as well as the day after surgery. She has her signalong Lily that her cousin Jocelyn got for her and her new teddy bear from the Lincoln land down syndrome society to keep her amused as she sees out the next few days.

lunch update

Lily is awake and back to her old self(with the exception she is not allowed to roll over, crawl, clap, or dance) She woke this morning a happy baby and was hungry immediately. She has sucked down 3 bottles of pedialite and some yogurt and applesauce. Grandma Owen arrived to the hospital today and she walked in to greet Lil and Lily gave her the first post surgery smile. Since then Tara and I have been trying to get her to smile for us and have had no luck. She just wants us to feed her. Which we are more than happy to do...

Other than that, Lily is doin great in her recovery. we hope to move on to a permanent room soon, but don't want to rush her. She is still hooked up to a pace maker because her body is getting used to her new heart system. The nurses here have been better than fantastic. We have a library of books to read to Lily and all the toys we could ever imagine. She is watching Wheel of Fortune and The Price is Right just like she did at home. (She loves the sound of the wheels spinning) I need to get off the blog now so I can go back in and feed Lily her lunch. Mashed potatoes...


By the way, when folks ask what it is that you can do for us, Tara and I have expressed interest in meeting Albert Pujols before getting a gift of front row seats at tonights cub cards game. Our friend John said he is setting it up now, so if you would like to help him we would appreciate it.

Thanks in advance,

The Owen's

Day after surgery

Lily had a wild night. The breathing tube came out early last evening and she had the temporary pacemaker removed indefinitely. I say indefinitely because it was used off and on throughout the night as her body gets used to its new heart. She was running a bit of a temperature so tylenol was given to her as well as morphine as it was starting to become evident she was dealing with a small amount of post surgery discomfort. Her fever got up to 101.1 but sometimes this happens post surgery as your body fights off infection or bacteria.

Mom and I are doing great. We discovered that the Hill neighborhood here in St. Louis is only a short drive away. Charlie Gitto's is the best italian restaurant in the world. Only comparable to "The Rosebud" in little italy on Chicago's southside. The only problem is the Hills convenience. Soon Tara and I may have cardiac issues as well. HA!

Today we are looking to leave the recovery room in Cardiac Intensive Care and move to our own room. When this happens we will be able to hang out with Lily a little more comfortably. We'll keep you posted on how that goes.

Also, Tara, Lily, and I want to wish Uncle Ross a happy 23rd birthday.

PRAYERS ANSWERED

Surgery is complete! Lily did great. She has a breathing tube in and a pacemaker attached just to bring her body up to speed but those are temporary. We get to see her in a soon as 1 hour, so we are going to go get something to eat and see our baby. Thank you everyone for your prayers. The main part of her surgery is over, but we still need to wear off the effects of her anesthetic and see how her body responds.

Thanks again

Love the Owens