Fabulous Friday!!

We had a great first day home. Sean did not disturb us until 10 when it was time to head to pick V up from church camp with her friend Morgan. She was so excited and surprised when I met her at the church. She was expecting us to still be in Charleston, I think she underestimated her little sister. V and I ran to Wally World to do some fat free shopping so Abby could have something to eat. We were delighted to find some yummy things to eat: cheese slices, yogurt, sour cream (she loves to eat it by the spoonful) some cottage cheese and lots of fresh fruits and veggies. I found myself looking a labels in a new way. I am one of those yep looks good let's get it shoppers. I never look at labels but WOW we really need to pay attention to the amount of fat we have been eating. I am looking at this 6 week no fat thing as a chance for us all to get a little more healthier. I was just cooking some dinner (tacos) and Jacob came in and said "Yuck...fat free tacos." We had a little discussion that aside from the cheese and sour cream everything was the same as "fat-in tacos." Boy was that a relief to him.
Abby has bounded back amazingly well. Today we stopped off at Nana and Papa's and she showed them her zipper.(code for incision)She was so proud of it. While I shopped on-line for V's textbooks she ate some of Papa's pickles. She may not be related to him by blood but the do share an amazing love of pickles. Once we got home she played outside in the yard with Owen and ran up and down the driveway a few times. I kept telling her to slow down but she had a freedom about her like never before. Not one did she say she was tired or appear out of breath. She just amazes me. My walking, talking miracle girl :)

Wheels!!!!

Abby Grace slept until after 10 this morning just before rounds happened. She was still wiping the sleep from her eyes when the team came bouncing into our room. After a bit of listening and looking they announced that tubes were coming out and we were going home TODAY!! Woohoo :) :)
So tubes came out around 11, had our x-ray and echo and we were cleared to leave. We made our way over to the pharmacy where we waited for almost an hour for her meds which Bryna had tubed over 2 hours earlier.

Nurses Note: We had Bryna when we were here for Ab's first heart surgery and let me just say she is fantastic. She is so sweet and calming with Ab. She is having a baby boy in September and she is going to be an incredible mom :D She won't be here when we are back down here in December for a few days when we have dental surgery but we were so happy she was here this time. All of the nurses here are super. They truly have a heart for what they do. Caroline, Tara, Lindsey, Rachel, Ms. Sandra, Mrs. Mary and all the other nurses were just wonderful :) Funny story...the other day I ran down stairs to grab a sandwich and left Ab up in the room eating her noodles. I returned to hear her carrying on a conversation with one of the nurses at the station in the remote. I told her if you need anything just press the button, well apparently she just needed to talk :)

Anyway, we went to the playroom to return the menagerie is toys we had borrowed and for Ab to have one last date with the doll house. Then we returned to the room for one more meal of noodles, ketchup and hotdogs. Bet she won't touch another hotdog for weeks. Now we sit playing Cooties, watching Enchanted (for the 10th time) waiting for our wheels to arrive to take us home. It is going to be so great to sleep in our own beds tonight and just be back with our family.




We don't have many limitations right now just a few not so great ones:
No swimming for 2 weeks in the pool. (lake, ocean, stream 12 weeks)
No soaking in the tub for 2 weeks.
No bouncing on the trampoline for 6 weeks.
No school for 6 weeks.
* And the kicker and worst one of all.. No fat diet til September 9!!!
That last one will be the hardest one to deal with. Luckily we can do some pasta. She is actually allowed 10g of fat a day but I guess Chick-fil-a and McD's are out for a while :( I was looking at options and really it should not be too hard to do but just have to start reading labels on stuff.

I will post an update in a few days. Thanks to everyone who has been praying for Abby Grace and offering encouragement and support!

Wordless Wednesday (Our humble abode)

103.3

Way to high for an ox sat and way to high for a fever too but that was the case last night!


Abby had a great Monday even walking to the elevators and playroom. She ate wonderfully, colored, painted, played doll house and then it hit. We got our vitals done around 10 or so and she was HOT!! Nurse Tara and Ms. Mary immediately called in the resident. They took her chest bandages off and looked at her chest. It was a bit red but nothing too alarming. They went ahead and drew blood and sent it off for a culture, ordered an x-ray and gave her some antibiotics. A little after midnight we finally drifted off to sleep.
This morning she woke up in a "Crabby Abby." Did not want to eat any breakfast at all. Unfortunately since we had a fever last night we could not leave the room to go to the playroom. So we spent the morning in here coloring and watching movies. After lunch Dr. Bradley and Mrs. Cathy signed off on getting her mid-line tube out and neck line out. That was rough but once they were out she was thrilled.


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2 volunteers named Sam & Summer stopped by to pamper her a bit by painting her toe nails beautiful bright pink. She loved them so much they left her the bottle and I later painted her fingers, my fingers and my toes too. She was so excited and wanted to show everyone that we matched. Sam was a high school student here in SC that wanted to start a volunteer project here at MUSC last year she decided to start "Sam's Special Spa" she comes in once a week and paints the toes or fingers of little girls in the hospital. So sweet of her to volunteer a day to brighten the day of these little patients. Her mother is in charge of the happy cart here which is a cart that comes around on Thursdays and the kids get to pick a toy to keep. Last week when it came by Abby Grace was asleep so I picked a princess pillow for her, she loved it.



Dr Bradley stopped by before heading out on a much deserved vacation. I tell you what that man is a miracle worker here on Earth. He is so nice and gentle with children and has a great bedside manner. I will never forget our first meeting with him in April 2008 when he told us he'd have to operate on her ASAP. I just get tears in my eyes thinking about what might have been had we not come to MUSC. He is such a special man and will always hold a special place in our hearts. To think that he actually held her heart in his hands amazes me. He truly is using his God given talents to perform miracles here on Earth. Thanks Dr B!!!

Fluid levels have dropped a lot and we are still on track for going home by this weekend. We sure are ready to get back to the family especially since my sister and her family will be down from Toronto for a few weeks.

Thank you all for your continued prayers and support.

Sunday Snapshot

Rainbows

After every good summer storm I love to look for rainbows in the sky. Well today was our rainbow day. Abby Grace woke up in a fantastic mood. She did however once again throw up her morning meds because there was just too much going in to her little empty tummy. She we got her all cleaned up changed her bed and played barbies as we waited for the rest of the family to arrive. One great thing about being @ MUSC is that there is so much to see and do in Charleston. While we were playing Barbies Sean and the crew headed over to the Yorktown Battleship. The boys had a great time checking everything out. Unfortunately though I had the camera at the hospital so there are no pictures of their adventure.
They finally arrived at the hospital a bit after lunchtime but we had to wait until 2 to go to the Child-Life playroom. Let me tell you once we got there we did not want to leave. It is only opened from 10-12 and 2-4 on the weekends and we sooo wished it were opened longer. Everyone had a great time.

Abby talked V in to playing barbies and play house.


Sean and Jacob enjoyed some pool and then of course some video games.



I think Owen thought he was in toy Heaven. He played with dinosaurs, cars, castles, pirates and even tried his little hand a playing pool.




After our fun play date we decided to leave Abby at the hospital for a bit and go downtown for dinner. You know you can only enjoy hospital food for so long and then ugh. It was great to get out for a bit and I knew she was in great hands with our nurses B and L. We ended up going to T-B*nz and even ventured out on a carriage ride through historical Charleston. It was something I have always wanted to do but never have done before. Owen was very excited :)It was really interesting to hear about the history and see some beautiful sights. I was gone a bit longer than I had hoped and Abby let me know she was not at all happy with me when I returned. Huge tears filled her eyes and she started to cry. She refused to talk to me for almost an hour. I offered her the treat I brought her but she just nodded no. We finally got back on speaking terms when I offered to do a craft with her. Then things were fine. We have decorated her room with all sorts of pictures, paintings and projects. It looks so happy. In fact yesterday she said, "Momma I kinda like this place." That was something I never thought she'd say.
We are so lucky to be able to be this close to a great heart hospital for children. And we are so blessed to be the family HE chose for Abby Grace. She is our little miracle and we stand in awe of all that HE has done in her life over the past 4 years.

The storm finally passed

Been working on this for 2 days:

Thursday: We are currently still in the eye of the storm thanks to a little drug called T*radol. Within minutes of getting it Abby was peaceful once more. After lunch we loaded her up with all her attachments and took a much needed trip to the playroom where she painted a beautiful picture of me and a rainbow and played with the dollhouse. She had a great time getting out of our room and could not wait to go back on Friday.





Friday:Today has been great with the exception of some vomiting brought on by all the meds she is on. We had some visitors as Tory, Emma and MeMa stopped by to visit. Abby was so excited to see them. They even brought her a little panda named Bamboo. The afternoon was spent coloring and watching TV in our room waiting for our other special visitors to arrive. Finally around 9 PM Daddy, V, Jacob and Owen arrived. She was happy to see them all. I answered a few questions that the boys had about her tubes and everything them they spent time talking to both of us before they made a quick exit around 10 when the second half of the hurricane arrived. The T*radol had finally run through and she was done as well. She cried in pain just as she had on Thursday morning and it was just as awful to watch. Lucky for us Nurse S got her all calmed down and we took a look. Her left tube was draining a lot so much that it was leaking around the incision. The Fellow and the Resident came in and checked her over. Prescribed something to help her rest and then Nurse S got her all bandaged up again and ready for bed. She was so good at calming her down and talking her through the pain. We were so lucky to have her. She slept pretty good throughout the night. She got her oxy and tylen*l as scheduled and woke up pretty happy this morning.

The calm before the storm

Well we have enjoyed about 36 hours of calmness but early this morning a huge storm hit. Now I love a good storm: a little bit of thunder maybe some pretty lightening, maybe a little bit of rain too. However, this storm was like a huge hurricane, Hurricane Abby. She slept well til about 8 AM then the pain, tears and screaming started. Nothing we did could soothe her. Of course I just wanted to scoop her up and cuddle with her (not possible with all the tubes) So instead I just sat with her and rubbed her little legs (when she wasn't kicking me with them) and wiped away her big crocodile tears. It was really odd because it came in spells kind of like the bands of a hurricane. One minute the was screaming "My tummy hurts a lot" and the next her eyes were closed and she was just whimpering quietly. It almost brought me to tears to see her in so much excruciating pain. Thank goodness there is a calming eye in every hurricane because at the moment that is what we are in. She is resting and purring. I don't know how long this peaceful period will last but I'll just enjoy it while I can. I love watching her sleep :)

Wordless Wednesday

Quick update:

This little monkey amazes me :) She is pretty alert this afternoon going as far as to ask to get out of bed to which we all quickly replied, not yet. She is eating and drinking a bit: grits, a boiled egg, some oranges and orange juice. Right now she is sitting up in the bed watching movies. Last night she told her nurse she wanted to watch princess movies so this morning that is what they found for her and her favorite, Arielle!!! She has melted the hearts of everyone who has been in her presence. MUSC is a teaching hospital so all of the students just smile and giggle as she waves at them and wants to know their names. Besides the 3 tubes, 2 IV's and various other things attached to her little body you'd never know she had surgery yesterday. I love how she explained it to a med student today, "The doctor unzipped me, fixed my heart and zipped it back up" isn't it amazing how her little mind works. Such a complex surgery but she put it so simply. Boy do I just love this little girl!!!

94%

Surgery is over and little miss Abby Grace is resting comfortably in the PCICU here at MUSC. The surgeon was totally pleased with how everything went. She is satting at 94% right now and her little bitty toes and fingers are PINK for the first time in her life. She has been opening her eyes and responding by nodding her head and blinking her eyes. They have her arms restrained in case she wakes up more and tries to pull anything out. (which given half a chance she'd manage to do)
I will update either update tonight or tomorrow with a few pics:)
Thank you all for your thoughts and prayers and words of encouragement!!!

The longest pre-op in history

We reported to MUSC for our pre-op at 9 AM sharp only to wait, and wait and wait. We did all the routine stuff: EKG, Echo, X-rays, lab work. That was all done by 1:00 the time we were supposed to be done with our appointment. Then we waited and waited and waited for all of the doctors to come by for their consult. We met everyone and anyone who may be working with Abby Grace during surgery. She was a trooper lifting her shirt to show everyone her zipper on her chest, breathing in and out like she was a pro and generally being a social butterfly with the entire day surgery team. The childlife specialist was there to entertain her while the doctors each explained to us their role in the surgery. Ms. Betsy was so sweet trying to find butterflies for Abby to color and found a cool sand art fish that we worked on. We had a good day but there were a few tears shed because Abby was just through with the whole thing, after 8 hours wouldn't you be too






Surgery is scheduled tomorrow morning. We have to be at MUSC at 5:30 AM. They plan to take her back at 6:30 and surgery should begin around 7:30. Dr. Bradley said to expect 6-8 hours of surgery and most likely a 2 week stay in the hospital.

We really appreciate all of your prayers for us in the coming days and weeks ahead. I will update tomorrow after surgery is complete.

A little bit of fun before surgery

I think we were a bit crazy when we decided to take a day trip to Car*winds on the SC/NC border this week. We have not had a chance to take a vacation this summer so this was it. We had a great time despite the heat. I will let the pictures speak for themselves.

MOOO!!!

We enjoyed our free dinner for National Cow Appreciation Day at CFA. These were the only 2 who dressed up, along with me, so they got the benefit of free dinner and a little playtime in the playroom.