Our Journey So Far...

Thought we would share some pictures from Taylor's journey thus far. She has been so brave and we are VERY proud of her!
The NG tube was no fun! Taylor didn't want to close her mouth after they inserted it. Swallowing felt strange because of the tube going down the back of her throat.

Talking to Daddy before heading to surgery.

Her face was SO swollen after surgery. She looked so sad. It took about 36 hours for the swelling to go down completely.

We flipped her the second day so she could watch TV. She was still pretty swollen here - especially her left eye.

Taylor's IV pole is quite full - it looks like a Christmas tree lit up at night.

Our first big smile from Tay - Mr. Jay and Miss Dena visited and helped Taylor with a painting project while she sat in the wheelchair for the first time.

Our favorite nurse so far - Mr. Jeff. Taylor gave him a run for his money and acted as if she didn't like him, but we know she did secretly. He always had a song or dance to go with the moment at hand. We won't have him again until next weekend - bummer!

This picture is dark, but I love it. She is playing on the computer before night night time. We are so thankful Chad had an extra laptop for us to borrow during this time - thanks Chad!

Nanny and Pawpaw Fink and Aunt Linda are on their way for a visit today, so we are very excited. Hopefully we will take a couple more walks today and maybe visit the playroom again.

More later...

Day #2

What a difference a day makes! It has been a good day around here. Getting Taylor up and moving was difficult at first, but things turned around quickly. She sat up on the side of the bed first and then into the wheelchair. She decided to paint while she visited with Mr. Jay and Miss Dena. They were so sweet to come back and visit us before heading back to Lafayette.

She returned to bed and then before we knew it Daddy and Bryce arrived! We were all quite excited to see one another....you could tell that Bryce was kind of confused by everything. I noticed him looking at Taylor with a concerned look on his face. So sweet! They gave each other hugs and kisses right away! :)

Taylor was asking to go for another walk by early afternoon. The goal was for her to walk a few steps to the wheelchair - it took about 13 or so and she protested the whole time. That's our Taylor! So, she made it to the wheelchair and off all 4 of us went for a walk. We spent some time away from our unit and then Taylor asked if she could go to the awesome playroom on the 6th floor. We were so excited that she was feeling that ambitious. We returned to our unit to get our nurse's assistance (she is still on many monitors and such because of the pain pump so it's a little tricky to get too far away). We were able to visit the playroom for a few minutes (they have limited hours on weekends). Taylor did get out of her wheelchair and walked to a table that had cars to play with. These were all such great accomplishments for her today.

We returned to the unit and guess what??? She had her first bowel movement in her diaper! This is a very big deal - we were told that on average this doesn't usually happen until about day 4. This is a very good sign that things are working properly.

She got changed and then we couldn't believe our ears....she wanted to take a walk on the unit. Walk - not ride in the wheelchair! She did GREAT! This was quite a big day for her so we returned to our room and got her comfy in her bed again. She has been watching princess movies (surprising I know) and playing with some new surprises that Miss Holly sent for her. Btw, a huge hit Miss Holly! :) She also wants to go online and play with her Webkinz doggie again, so I need to finish up.

I'm going to try to post pics later so you can see our journey so far. Hopefully I can do that after she falls asleep tonight.

Love to all
More later...

The Day After...

Sorry to post so late....a very busy day. Our biggest issue today was severe leg pain. Kind of threw everyone for a loop. Thoughts were just stiffness and sore from position in surgery and not moving in bed much to blood clots, low potassium, etc. As the day wore on and multiple sets of people came in and out to assess the situation - it was determined that she is just really sore. They encouraged her to sit on the side of the bed, which she did twice. This way her legs could dangle and be in a different position.

By late afternoon we thought we were making headway. She wasn't complaining so much and even let the nurse's asst. put her back to bed without tears and pain complaints. But.....she has been in the exact same position (I think she is afraid to move and is just stiff as a board) again for about 3 hours and is starting to complain. She has had me push her pain pump twice in the past half an hour. I'm working with the nurse on the best plan to keep her moving - I believe we need to be doing range of motion exercises frequently.

They started TPN (her nutrition) today around 6:00. She will receive that around the clock and the bag will be changed daily. She is also getting lipids, antibiotics, her acid reflux med and the pain meds. Her IV pole looks like a Christmas tree with all of the pump lights and such.

The swelling in her face is almost completely gone...she looks like herself today. The left side of her face still had swelling throughout most of today, but is much better tonight.

Great news! We had visitors today! Pastor Terry, Polly and the family came for a visit this afternoon. They brought Taylor more goodies - which she loved! Taylor fell asleep toward the end of their visit so I was able to sneak to the cafeteria with them for a quick bite of supper. While we were finishing up....we had another surprise. Miss Dena and Mr. Jay from our church arrived! I was so thrilled and so was Miss Taylor! Miss Dena is a very special friend to Taylor and now they are colon buddies. Miss Dena had a large portion of her colon removed recently due to cancer...she will be starting treatments within the next couple of weeks also. She is an extra special friend and now the share an extra special bond. If you could please add this wonderful lady to your prayer list we would sure appreciate it.

Thank you all once again for all of the love and prayers...they are getting us thru every minute, hour, day and we can feel each and every one of them.

Taylor is finally sleeping, but she is moaning some so I should go and talk to the nurse and a different position. I just don't think she is comfortable. Then off to bed....hopefully without too many interruptions tonight. We'll see...I think that is wishful thinking :)

Big day tomorrow - Daddy and Bryce are coming. I cannot wait to get my arms around that little man of mine!

Love to all!
More later...

Resting Comfortably

Taylor has been getting plenty of rest since arriving back in her room. They have her on a pain pump, which really helps to keep her comfortable. She wakes every so often, but falls right back to sleep.

She has been talking in her sleep - saying some pretty funny things. The first thing she said was "Bryce...be quiet I'm trying to sing my ABC song!" :) How cute is that?! She also keeps mentioning Aladdin a lot (she did watch the movie last night come to think of it).

One thing I was not prepared for is how swollen her face is. They perform the surgery with her on her tummy, bottom in the air and face down. With all of the IV fluids - gravity took over and now her face is very swollen. I've been told this should go away by tomorrow.

Daddy and Nanny Austin headed for Lafayette around 4:00, so they should be getting home soon. Neal will work tomorrow. He and Bryce will return on Saturday, if all is going well with Taylor. I will be so happy to see my little man. Taylor and I miss him so much.

I wanted to take a quick minute and thank everyone for the care packages before we left and the deliveries at the hospital. Taylor knows she is LOVED!

Thank you all for the continued prayers....please keep praying for her continued recovery.

More later...

Surgery - 3rd hour and they're done!

We are so thankful to report that Taylor is out of surgery - *only* 3 hours! Praise the Lord! The surgeon informed us they removed 43 cm of her colon. She did well and we are waiting to be called back to recovery to be by her side.

We were also informed that she will have nothing by mouth for 10 days (not 5 like we were originally told - pray, pray, pray about this.....what a long time!)

Thank you again for the prayers....they have definitely helped us thru this morning. Please continue to pray for Taylor. Specific prayer requests - pain can be controlled easily, she will tolerate the TPN (nutrition) and time to FLY so she won't notice that she is not eating or drinking for 10 days!!

Thank you all!
More later...

Surgery - the 1st hour

Taylor had a very rough night so by the time they were ready to take her to the OR she didn't even have enough energy to protest. She quietly looked at us and was wheeled away.

The nurse called from the OR around 9:00 to let us know that she went to sleep just fine and they were officially starting the surgery. This surgery is estimated to last 4 - 6 hours.....a very long wait for Mommy and Daddy.

Thank you for all of your love and prayers. We feel them...trust me....we feel them.

Neal corrected the problem with the laptop, so hopefully I will be updating often.

More later...

Tough Day!

Hi Everyone,

This is Kristin updating for Lori. I just got off the phone with her and it seems that Taylor's first day in the hospital was pretty tough. She got the Picc line inserted first thing, which isn't fun. Thankfully, they got it in with the first attempt. The line will assist her with IV fluids and TPN nutrition over the next several days.

After the Picc line she had an NG tube inserted, this is a naso-gastric tube that goes through the nose and into the stomach, this is how she is getting the medication tonight to help do the "clean out" before surgery. Taylor was pretty wiped out after all of that, but Lori says that she is fighting sleep and watching Little Mermaid II for the 101st time tonight! :-)

Surgery is scheduled for tomorrow (Thursday) at 7:45am. During rounds this evening the surgeon told Lori that the surgery will last somewhere between 4-6 hours! One of us will try to update again tomorrow.

Lori also wanted me to share their room number. They are in A4 South, Room 53. Hopefully they will have their computer up and running tomorrow.

Please keep Taylor in your prayers tomorrow for a swift and painless recovery. Pray for Lori and Neal, it's never easy to hand your child over to a surgeon. And finally, please pray for Jesus to guide the surgeon's hands and heal our Tay!

XO
Kristin

Curve balls

Yes, life has thrown us some curve balls this past couple of weeks. My goal is to finish with

Taylor's birthday party pics and then get you updated on our trip to Cincinnati and what

we found out about Taylor's bowel situation.

Here are the fun pics from her 4th birthday party...what a great way to end her birthday week.

Taylor had a Little Mermaid "Under the Sea" party - so she had to have her picture taken with Ariel!

Our good friend Addy at the party - isn't she so cute! Wish I would have gotten a picture of the girls together.

Taylor and Ellie
One of Taylor's favorite gifts - a Little Mermaid nightgown from Carolyn, Charlene and Chuck. If it is clean...she has it on!

Taylor's best friend Kelsey - this is another favorite gift....I think we have watched it about 40 times already...

Our sweet birthday girl.
Blowing out the candles! She did a great job!
Taylor and her buddy Clayton.
Bryce hanging out and watching all of the birthday chaos! :)
A great way to end the day....Bryce reading Taylor a bedtime story (or at least trying)...I just LOVE this picture!

Okay, now onto the not so fun stuff. We just returned from spending the week in Cincinnati having tests and meeting with the Colorectal Team. The good news is she is finally cleaned out on a daily basis, but it has taken 8-9 squares of ex-lax a day and 4 T of pectin. Obviously this is not acceptable, so she is a prime candidate for a surgery to re-section her colon. After having daily x-rays and seeing exactly how her bowels move...they know what section is causing the trouble. They will remove this area (about 15% of her colon) and reconnect it. This new area of colon will have to be "retrained" to learn how to move stool through her. She will be on TPN (a liquid nutrition that she will receive thru a PICC line) for about 5 days and then they will start slowing introducing foods to see how her body tolerates it.

She will be admitted next Wednesday for pre-op and the surgery will be Thursday. They expect us to be in approximately 7 to 10 days just depending on how everything goes. The top Colorectal Doctor in the WORLD will be performing her surgery. People fly in from every where for this man to treat their children and doctors come from many countries to study under him. We are so thankful to live only 3 hours away from such awesome medical care.

Please join us in prayer that all of the details will come together - especially making arrangements for Bryce while Daddy is at work. Neal will come down the day of the surgery and a couple of other days, but he will need to work the rest of the time. This will be a very difficult time for everyone in our family. Being apart will be hard all the way around.

I believe I will have computer access at the hospital, so I will do my best to update the blog and my facebook page often.

Thanks for your prayers.

More later...

Fishing, Park & Picnic

On with the celebration of Taylor's birthday week. She could just not wait to get out and use that new pole Daddy bought for her. Well, if you are going to go fishing you need worms...so off they went to dig in the backyard.

Bryce needed to check this out!

That looks like just about enough.

Taylor is ready to go with her new pole and bucket of worms!

Fishing with Daddy is the best way to spend the afternoon!

Time to play at the park - she fished for about 45 minutes (which I think is pretty good when you are 4 years old).
Bryce loved climbing up the steps and making Mommy very nervous.
Taylor looking cute in her sunglasses.
We finished the evening with a picnic (I didn't get a pic though). A great evening!

More later...

Birthday Blessings

To start off Taylor's birthday week we had a special visit from one of her very favorite Sunday School teachers. Miss Dena brought Taylor wonderful surprises including a pop bead kit, my first dress up doll and a homemade bracelet. Taylor loved it all - she played with the doll right away and we created jewelry the next morning when brother was napping :) This will be a great craft to take with us on our trip to Cincinnati for some crafting fun.

Taylor turned 4 on the 14th of April. What a fun day she had. First off - it was a school day, so she got to celebrate with all of her friends with chocolate ice cream cups (she chose what to take). We love, love, love her school and she thinks her teachers are pretty special.

Miss Linda, Miss Robyn and Taylor.

After school we had a small family celebration at home with Mommy, Daddy, Bryce and Nanny Austin. She could have whatever she wanted for supper so she chose pizza. We had pizza, salad and fruit salad and the most exciting part was Taylor getting to use the "special day" plate for the first time (this is a plate I created for the kids to use on a special day - like their birthdays, when they get good grades, memorize a memory verse for church, get caught doing a good deed, etc.)

And of course there was cake!

And presents.....she received a new fishing pole from Daddy. She was SO excited and could not wait to go fishing. She also received clothes and money from Nanny Austin. Last, but not least Mommy and Daddy gave her bunches of Disney princesses.

What a fun birthday - now she only had to wait 4 more days until her party.

More later...