Doc Appointment

Today Lily had her first cardiologist appointment since her surgery. Dr. Nicholas was very pleased with how everything has gone. He said he is very happy about her weight gain and how she looks. we go back in 3 months and from there we will gauge how often we need to return for cardiologist appt.'s. Lily goes back to daycare tomorrow and is really looking forward to playing with her friends again. She loves daycare and has shown tremendous progress both socially and physically. She is curious about so many things and is learning from the other children.

Thats it for now, I am tired after a long day in Northern Illinois. Hopefully I will be back at home soon to be with the fam.

Our new baby

I am not sure if there was a switch at the hospital or what but we have a new baby. We're still calling her Lily, but she resembles nothing of our former child except they look a lot alike. The new Lily has gained over a lb since right before the surgery. She eats like Kobayashi and she drinks like a fish. Tara and I have strapped shoes on her a lot lately and she is really doing a heck of a job standing on her own. The biggest difference we notice is that her endurance has increased 2-fold. Depending on who you ask this is not always a good thing...haha. Especially in the middle of the night.

You could say life has returned to normal here at the Owen house. Fall is upon us and with the Park being so close we take lots of walks. Lily and Dad went to the zoo last week and had a picnic out at the lake. Lily loved the Tortoises. Many times they would get into staring contests that would last for minutes. I think the Tortoises met their match.

Monday we go to the cardiologist to get a final checkup. Keep your fingers crossed that we will get taken off our medicines.

More updates after monday...

we r at home!

We are so glad to be back you can't imagine. We got into the car and Lily instantly started smiling. She was so happy to see her car seat. She slept the entire ride back from STL. The childresn hospital is nice, but we have no intention on going back anytime soon. Thank you everyone for your thoughts, gifts, prayers, and well wishes.

Best news yet...

We are getting out of here! Tomorrow at around 9 am we are headed home. Probably in time to meet the remains of Hurricane Ike. We want to thank everyone for their prayers. we are out 2 days ahead of the proposed schedule.

Tara and I are exhausted and have no concept of time. Lily is pretty re-arranged as well, nights are days and visa versa. hopefully it won't take a real long time to re-adjust.

We can't wait for the 4 of us to be sitting in the living room of our home again. (4 including Allie-Thanks grandma and Grandpa Owen and Uncle Ross for watching Allie while we were gone)

We ask that people hold off on visiting for a little while. We understand you want to see Lily, but she is still recovering and adjusting and her feeding schedule and most importantly her exposure to germs or lack there of is paramount. We promise in time everyone will get their fill of Lil.

Thanks again!

****when we get home I will upload all the pics we have been taking since her surgery.

She's Back....Almost

Today Lily had a big morning. First, Tara stayed with her last night. She decided to stay up late and slept for about two hours. So at 12:30 AM, she wanted to play. They were up about 1.5 hours and then she went back to sleep. She then woke up at 3:30. Our nurse Jenny put her in the wagon and she sat out with the night nurses while Tara got some sleep. She was scheduled for a blood draw, echocardiogram, EKG and chest xray. Those went better than they did on Tuesday. We changed her dressing for her incision and gave her the medicine (of the hour). Right now, her and Jared are sleeping. Later today, we get the results of the tests and if they are good we go home tomorrow! Jared said that we will be travelng in some nasty weather-of course when we probably will be traveling home with a post heart surgery 15 month old. Should be fun!!
She is sitting up in bed now palying with toys. She is eating and today on the xray table she rolled onto her belly. She wasn't quite sure about that after she did it though. Things are progressing better than we thought. Today we are going to try to make her nap early and give her a sponge bath. Her hair finally has most of the tangles out but lots of medicine in it, making it a sticky mess. Hopefully, this will help her sleep better tonight to rest up for her arrival home!

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

noon update

Lily made it through the repair! However she is still opened up because they are doing an echocardiogram to make sure none of the repairs they made are leaking. Pending they don't find any problems with the repair and all valves are in working order, we can be, for lack of a better word, put back together. Please keep your prayers rolling as we still have a few hurdles to jump.

10:45 update

Lil is doing wonderful. The repair of her heart has begun. Her lungs and heart are currently on a bypass machine so they can do the repair. Not sure when the next update is going to be, but we are told another echocardiogram is going to be done while her chest is open so they can make sure the repair went smoothly. I think that process takes a little bit of time. We'll let you know more when we hear something.

new update as of 9:45

surgery nurse just came in to our waiting room and told us that her anesthesia went well and all her lines are in and they are getting ready to start the actual surgery. 1st hurdle is over.

The nurse said she was a happy baby in the Operating room.

I think we are gonna take a walk. we are supposed to get the next update at 10:45. For now we are watching re-runs of Frasier.

morning of surgery

What a morning. We were up at 5:00AM to shower and get ready. we thought the walk from our hotel to the hospital would take around 20 minutes but it was only 5 minutes. Parkway Hotel is very nice for anyone ever planning a trip to the Childrens Hospital. Once we arrived at the hospital we checked in and were taken to the same day surgery center where we were given our private waiting room, its very nice. Lily and mom and I played for about a half an hour in there until we were called to surgery prep. Lil was smiling for all the doctors and we have been told many times her smile makes everyones day. The doctors came by the surgery prep room at about 8:00 am to escort Lily and Tara and I to the operating room doors. One could never imagine how tough it is to hand over your child to the care of the surgeons. Lily was a champ and didn't make a peep. In fact she fell asleep in the arms of one of the surgery nurses after mom carefully handed her over.

Thats about all we have for now, I think Tara and I are getting ready to go get some coffee and some food. Lily's grandparents are here with ,helping us as needed. We will let you know more when we hear something.

Here are some photos of Lil in the prep room

Huge day, but not as big as tomorrow

Well we arrived to St. Louis at around 9:30 Am today. Our first doctors appt was at 10Am and it didn't stop there. One after another we had 2 echocardiograms, blood tests, an EKG, oxygen tests, and many consultations with anesthesiologists and cardiologists. All of which assured us that this is routine in their world, but yet the surgery is still very risky. Surgery is set for 8:15AM tomorrow. we have to arrive at the hospital at 6:45 am to prep. Surgery should take around 4 hours. In other words when you are driving into work Lily will be entering surgery. By the time you leave for lunch she will be going into recovery.

Lily has been great to say the least. A few cries here and there but it is expected when people are poking you with needles. We are in our hotel room now, getting ready to go eat at a local STL restaurant in the neighborhood. here are some pictures I took today.

Getting an echocardiogram

We hope Lily's week ends better than Tom's

thanks for your prayers!

Care Pages address

we will be using carepages.com to keep everyone informed of Lil's surgery.

Click here to view

http://www.carepages.com/carepages/LilyHeartSurgery

The blog will also have periodic updates as well, if you do not wish to register with carepages.com