Winter Fun

Well Christmas was just perfect this year!!! Alyssa got lots of presents from Santa and enjoyed every minute of it. Alyssa also enjoys seeing the snow fall and had great fun sledding down the slide a few weeks ago. Here are a few pics.

Check out my Slide Show!

Say Cheese!!!

Today Bob and I took Alyssa and Abby to Chuck E Cheese. They had a great time. Here are some pics. We are getting ready for halloween too. Alyssa is going to be Minnie Mouse.

Edited photo

Playing around with the photo of Alyssa and Lucas

Play Date

Alyssa had a play date with Lucas yesterday. They had great fun playing with the loads of toys that Cheryl has. They even seemed to try and sneak in a kiss! ;-)

School Days!!!

The Classroom

Alyssa loves slides!

The gross motor room

The buggy they use to transport the kids in and out of the school

Alyssa had her first day of toddler school today and it went great! Alyssa is going to school tuesday and wednesday from 10-4. She attends St.Bridgets, but the program is through the county board of MR/DD. They will have OT/PT/speech therapy every week. They also have gym class. Her teacher is a former music therapist and Alyssa seems to like her. Of the seven kids, Alyssa was the only one that did not fall asleep during nap time! I think she is going to be a handful when it comes to that. Most of you know my trouble getting her to nap. ;-) Anyway, also met a few parents that recognized me from the NICU which was kind of fun. Always neat to see our NICU graduates! Looking forward to tomorrow- think I am going to stay just a half a day- we will see. Here are a few pics.

Another Great Weekend

Well this time it was off to Bayshore family campround which is on pymatuning lake. It was a beautiful campground and everyone had a great time. We went swimming, walking, and boating. The kids loved the pool and the lake. Alyssa was so happy all weekend and managed to have fun without Dora or Diego! She just ran, and ran, and ran. The mud puddles were a big hit! We also discovered her new favorite song is "miss mary mack." Here are a few pics of our weekend adventure.

Camping!!!

Well for those of you that don't know, we bought a camper with my sister. We went on our first camping trip this past weekend and had a blast. We went to Mohican which was a nice location. Looking forward to many more weekends of fun. Alyssa is doing great. Doctors appointments start piling up at the end of the month so we have another week or so before that excitement!

Summer Fun

Alyssa continues to do awesome!!! She is having some fun playing outside, swimming, and going on walks. Her incision is healing nicely. She is still good off her oxygen. She is definitely more spunky and full of energy (and trouble!). Thanks for the continued prayers.

Pictures are worth a thousand words!

"I love cartoons"

"He, He, look at me,

life is good,

when you're oxygen free!"

I Think it is Official!!

Well she is still in no oxygen and she is doing awesome. High sats and high spirits this morning. Follow up appointment went well. Again the only thing I can really say is WOW!

Hurray!!!!!

Well so far so good without the oxygen!!!!! I never, never,never expected this. I did think it would help her out, but certainly never thought this much. I still don't believe it! I keep looking down around the couch corners waiting for her to say "stuck, stuck." I can actually pick her up and go downstairs, outside, anywhere we want!!!! I feel like I am in a dream. So my thanks to all of you who prayed and please keep it up. We have a follow up appointment at 1:30 today with surgery. Can you believe it was one week ago already? She acts like nothing even happened. Kids sure are resilient!!!

WOW!!!!!!!

Well we are having an interesting day. While in the hospital Alyssa really needed her oxygen still. We have been weaning since she came home. Today we decided to try her without it, and it has been two hours now that she hasn't needed it!!!!! James and I are just in complete shock!!!! We keep waiting for her sats to drop. We just don't even know how to react. Even if she does need to go back on a small amount this is miraculous. I will keep you all posted. Thank you to everyone who prayed for her lungs along with her heart!!! WOW!!!!!!!!!!!!

Home Sweet Home

Well it is 9:15 pm and Alyssa is sound asleep in her own crib after a super fun bath. She looks awesome and we are really happy to be home so soon. Thank you so so much for all of your prayers. I have to believe Alyssa truly was in a higher powers' hands. I am adding a link to view all of the pictures from her hospital stay and a few from tonight when we got home. Thanks for all the comments and views-it has been fun to read. oh- we weaned Alyssa to 3/4L oxygen and she is doing well in it. Goodnight!
http://www.flickr.com/photos/alyssahayes/sets/72157600930887661

Coming Home!!!

After open-heart surgery, it looks as if this could be the shortest hospital stay ever! We are coming home today (Friday). Alyssa walked around the floor three times with ease and is doing well. Will update later :)

Thursday, July 19th

Alyssa is still doing wonderful. She has been moved out of intensive care and is now on the 6th floor, Room 510. She is taking formula and all I.V.'s have been removed (one of them by Alyssa herself!). Alyssa is awake today and has regained her unfavorable attitude towards doctors and nurses. She is sitting, reading books with mommy and daddy, watching tv, and sleeping. She should be home soon!

Recovering Peacefully

It was a long and sleepy day which was good for recovery! Alyssa is still doing great and is proving to us all just how incredibly strong she really is. Thanks again for the outpouring of hearfelt prayers and well-wishes- it makes these days so much brighter! Looking forward to seeing you all.

Wednesday, July 18th

Alyssa is doing well today. I just got done holding her for the first time since her operation. She is back in her baseline O2 of 1L. Her catheter and one of her chest tubes is out. If all goes well, she will be transferred to step-down tomorrow. She pointed to some animals in a book but has mostly been sleeping. She's doing wonderful! We couldn't be happier with her progress so far.

8:15 pm Last Update for the Night

Ok- one last update before we try to get some rest. Alyssa remains in stable condition. After an "Alyssatude" attempt at getting up in bed, she was given extra doses of Morphine and Ativan. She is now resting peacefully. She remains on 2L Oxygen. She looks beautiful and we are optimistic for a speedy recovery. Thank you for all your prayers and comments as they truly made this whole experience easier. Alyssa says thank you too :) I will post again tomorrow, possibly with pictures.

1:30 pm

Well we just got to see her. The surgery went well. She was on nitric oxide during the surgery but she did great. She is currently extubated in 2L oxygen. When she woke up in the PICU the nurses said she was pointing at her breathing tube and they knew they better get it out before she did it herself!!! They then gave her some morphine so she is pretty sleepy but she did open her eyes and try to cry a little. We just left cause her xray shows a small pneumothorax (air in her chest) so they have to put in another chest tube. This is pretty routine although still scary. Hopefully she will continue to breathe well. She really looks awesome. I expected her to look a lot worse. Tonight the goal is to keep her calm and comfortable. I will continue with the updates. Hopefully sleep for us is in the near future. ok- thanks for the continued prayers.

12:45pm

Just got our visitor passes that say she is in the PICU bed 13. No other update but the secretary said she will be coming for us shortly to see her.

11:20 am

Just got another update. Alyssa is off bypass and the repair is complete!!!!!
Wow- tears finally coming. I have wondered how I haven't lost it yet. I have just had a sense of confidence that I didn't expect. Anyway, she is not closed up yet. They are doing another echo right now and then I expect they will close her. Nurse practitioner expects she should be in PICU and able to have visitors about 1:00pm. Not sure whether they will be able to get her extubated or not. They have nitric oxide set up in OR in case her pulmonary hypertension flares up but so far so good, so say prayers that they can quickly get her off the vent. ok- stay in touch.

10:15 am

Alyssa is now on bypass and everything is going fine. Dr. Hennein is beginning the repair. Should be updated in another hour.

9:10 am

Martha just came out to tell us everything is going fine and Dr. Hennein is about to start the surgery in five minutes.

9:00 am

Alyssa went back about 7:45 am and we are waiting for our first update. They gave her some intranasal versed before they took her back so she wasnt crying or anything when the nurse took her. The first hour is intubating, puttting lines in, etc.. and we are waiting for them to come out and tell us all is well so far.

Another Change

Ok- so when I saw Rainbow on the caller ID I instantly got ready to explode. Fortunately this time the change was ok. Her surgery is now first case of the day so we have to be there at 6:15am and they expect to take her in for surgery about 7:30am. Surgery expected to be about four hours long.

ONE MORE DAY TILL THE BIG DAY!

I can't begin to thank everyone for their concern. We had a beautiful weekend and today we are getting ready for tomorrow. I think we need a moving company to transport everything we want to take to the hospital!!! We have a few things that are a must, and that includes her stuffed bull. Andrea Mann (one of her pediatricians) gave her the bull last year as she fought her way out of PICU. Then there is the Saint pin with a lucky clover and the St.Therese relic from Ann Fuchs (a friend I work with). Her Angel of Courage from Aunt Holly is also a must take item. Of course we have to take the big screen tv with twenty Dora and Diego videos as well. Ha, Ha, just joking on that last one. Well I will update the page tomorrow during her surgery, so please check back here for updates.

Testing, Testing, Testing

So....It was a very long day at the hospital but everything went well. Alyssa was suprisingly pleasant despite her dislike for doctors. We toured the hospital(although we're hardly strangers to the place) and Alyssa had blood tests, x-rays, etc.... We talked extensively about the surgery and what to expect before, during, and after. The average patient has a 5-7 day hospital stay. While Alyssa may require slighly longer than that, we are hopeful that it will be a relatively short stay. Finally, we feel confident that everything will go well and our little angel's heart will be successfully repaired!

Bumped Again

Just want to let you all know that Alyssa's surgery has been bumped yet again!!! She is now scheduled for Tuesday, July 17th due to a scheduling conflict at Rainbow's. She will have surgery at noon. Today is her preadmission testing, so I will update everyone later. Thanks for the comments, thoughts, and continued prayers.

A Few Days Away....

Alyssa has preadmission testing Thursday. Please keep us in your prayers.