Merry Christmas

Merry Christmas!

We hope you have had a lovely holiday and were able to spend time with loved ones.

October in a Nutshell

October was a great month! Karsie loved seeing pumpkins and fall decorations everywhere. She carried little pumpkins around the house as often as she could get her hands on them!

We enjoyed multiple trips to the pumpkin patches with family as well.

At her October GI appointment, Karsie weighed 22 pounds- a full pound more than the September appointment! We have LOVED not having any leaking, and Karsie enjoys eating that really does satisfy her appetite! She is doing well with her eating. She loves eggs, apples, chicken (nuggets), milk, cheerios, fruit loops, fruit leather, crackers, anything cinnamon flavored, and salmon.

Her surgery post-op appointment went well also. She was given the green light to have tissue expanders placed whenever she is ready for that step. We are thinking that waiting for a few more month's growth might not be a bad idea. We will share when we do end up getting a surgery date.

Karsie had a fun Halloween. She dressed up as Minnie Mouse... and thought the dress-up part was amazing.

She enjoyed twirling in her skirt. We went to the fall celebration at our church and Karsie saw lots of her friends.

Have you ever seen a cuter mouse?

Home From Surgery

Our lack of posting maybe tipped you off to the fact that we are home. Karsie did really well in the hospital once she started eating solids. Her energy and happy attitude came back rather quickly and she was discharged on Saturday. It was supposed to be Friday, but she had a short lived (1 hour), low grade fever... and her surgeon is a stickler for temps.

She is enjoying being out of the hospital... eating... and going for walks/rides to the nearby coffee shop!

And... she is really happy to be able to spend a little extra time with some new stuffie friends (from one of her favorite shows).

No Leaking

Good News! We saw radiology today to see if Karsie's stomach was leaking from the newly placed sutures. If so, there would have been a major surgery done to fix that. It wasn't as simple as going in and putting in an extra stitch. Well, it looks like we don't have to cross that bridge because there wasn't any leaking. Whew. So now Karsie is just working on eating. She is able to eat ice and drink little sips of water for today. Dr. Saenz usually visits us REAL early in the morning while he does his rounds, so we should have a plan tomorrow morning on where we go from there.

Thank you for all your prayers!

Picture Time

Got to take an outing when Sea World came to Children's Hospital for the sick kiddos. Karsie could only handle a little bit and then got pretty tired. She enjoyed the wagon mostly.




Not as scary as Santa, but still not too fun. This guy took an interest in Karsie and was good with her.

Mid-night and Morning Update

Karsie is doing pretty well so far. Our goal is to keep her pain managed and help her heal the internal sutures as best she can. The nurses have been really helpful with that goal. She has been still and calm most of the time!

We had a diaper change yesterday afternoon, but it was dry. We were concerned since she is getting a good deal of IV fluid. The nurses let us know that the orders say that she has 12 hours to urinate before they will use a catheter. Midnight came, and I tried wiping her down with warm water... still nothing. So, around 1:30 she got a new dose of morphine and a catheter (in just long enough to help her eliminate). She did well, and half-way through said, "I go pee pee." We asked if she felt better, and she said, "I feel better." So, hopefully that was the trick to get her to keep going on her own. As of this morning, she still has had a dry diaper- so keep praying for pee.

She slept for about 12 hours last night (off and on), which is better than we had hoped for.

Dr. Saenz came in this morning and said everything looks pretty good. He is trying to be really conservative with her and hope those stitches hold, so she is still not allowed to eat/drink today. He expects to do the barium study tomorrow to check for leakage in her stomach. If that is good, she will get to have liquids. If not, then he will reassess and likely do a second surgery.

This turns out to be a fun day to be at the hospital- Sea World is bringing live penguins to the hospital, and Karsie gets to go see them in a fun little wagon! She is on restricted movement (really light play only), but she is allowed to go down for this special event. I am sure we will be posting pics of that later! In the mean time, Here is a pic of our little Bug

She's Out

It only took an hour, but there are still some concerns. Dr. Saenz came in to do a consult with us after surgery and the first words out of his mouth were "Well, that was tricky." His face was not at all comforting, but it sounds like the surgery went well for what he did.

The basics: Karsie's g-tube created a sort of track (tunnel) from her skin to her stomach. The idea is to cut it out and sew up the stomach and the skin separately. The problem with that is that the sutures would rub each other and create a bigger problem.

The problem: Of course there's a problem. What's two years of ups and downs without one more thing to worry about. Dr. Saenz's concern is that he wasn't able to completely sew up the stomach. He thinks he got it for now, but with the swelling and post surgery issues, the integrity of the tissue isn't that great, which would then make a possible leak. We're going to do a contrast study tomorrow or the next day (barium most likely) to see if she is leaking from the inside. If not, our only concern is to get her eating again. If so, we're in for another surgery. This one would be much more invasive and scary. Pray for no leaking!

Other than that, the actual procedure went well. She is out and in recovery. The incision was small(ish) and isn't presenting any immediate problems. She's not yet awake, but she's holding bunny tight and her sats look good.

Thank you for all your thoughts and prayers!

She's In

The anesthesiologist just took Karsie back at about 10am. We made it through registration and pre-op without any problems. Karsie got to play bubbles and watch TV while waiting for the surgeon to come talk to us. Dr. Saenz came in and is still feeling concerned with the amount of space he has to work with. He doesn't want the stomach incision to rub on the skin incision and cause problems. He expects surgery to last 1-2 hours. She did great going back into the OR, and got to watch Dora on the way.

Surgery Plan

Here is the plan for tomorrow (Monday).

We check into the hospital at 7:30am. Karsie will have some surgery prep and lab work.

At about 9:30am Karsie will have surgery. The plan is for the surgeon to remove the track from the g-tube stoma.

We are not sure how long the surgery will actually take. It took about 1.5 hours to place the g-tube and do the fundoplication, so hopefully not much more than that. He did not anticipate her needing to go to the PICU after. However, he did think she would probably need to be in the hospital for a few days after.

We will do our best to keep things updated here. We appreciate all the thoughts and prayers you have been already offering up on our behalf. We are praying for a smooth surgery, quick recovery, rest, and peace for all of us.

SURGERY!

While it's a necessary evil, it's still an evil. Karsie's button hole is not closing up. At all. So, the only option left really is surgery. Dr. Saenz will open her up at the omphalocele site, cut out the track between her stomach and her skin, and then sew them up separately (that's how we understand it). The hope is that she will eat enough to grow on her own.

Ugh! We're sick with worry but hopeful that everything will be fine. Please keep our Miss Karsie in your prayers on Monday morning.

A Plug and an Update

This is probably just the second or third time we've used this blog for publicity, but since Kevin is the one we're publicizing, it may be okay.

During the past year, Kevin wrote a young adult book. Since he's a teacher, he has access to the opinions of middle schoolers. Long story short, he decided to write a book for that age, and it's now finished! At least, he's ready to share it. It's called The Magi.

Because it's so new, he's trying to generate a little buzz around it and obtain a small following so if and when it is published (either by a reputable publisher or on his own) there are people that know about it. So here's how you can help...assuming you haven't already:

1. Go to facebook (Kevin M. Turner) and become his friend.
2. "Like" THE MAGI SERIES (which is a page on his wall)
3. Go to the website www.kevinmturner.com and subscribe (everything's private) to get updates
4. (most importantly) If you know a young adult that would be interested in an adventure/fantasy book...or just likes to read, spread the word and have them check it out on the website. There will be writing samples up periodically.

To get an incentive to do all those things (which looks good for perspective agents), he is releasing chapters a little at a time based on how many people subscribe to the site.

We hope this isn't too out of line....

In Karsie news, she is having quite the up and down time. Her weight continues to maintain (at least it's not dropping) but she's not growing much. She is feeling much better but her gagging has come back. We think it's a result of the constipation setting off a spasm reaction.

We have an appointment soon w/ G.I. which will be scary as she hasn't grown and they said they'd put in an NG tube if she hadn't. However, we really think that they're very understanding and logical, so we have hopes that they will let her have another month. However, surgery is just around the corner, so she doesn't have too much time.

Until later...

Another Setback (slightly)

Things have been going well for Karsie. Her eating was up, she was drinking milk. It looked like we were on our way to freedom. However, we think she has had a small bout of constipation (hope you weren't eating dinner) and has had a lot less desire to eat. We're hoping it goes away soon and she picks up her appetite again soon because we're nearing our GI appointment and she hasn't gotten back to her previous weight before the major leaking of the g-tube.

Today has been slightly better, but we still need much more than this.

MILK--It does a Karsie Good!

So this is a risky thing--putting our recent success out into the universe. Hopefully everyone knocks on wood before reading.

For months and months, we have known that if Karsie drank milk the way she drinks water that she would grow like a weed. The problem was, she didn't like milk. RATS!

A few days ago, however, we decided to water down some milk and call it water, which it was...mostly. And she drank it! Since then, we have been slowly increasing the milk to water ratio, and she has taken to it (that is, once she realized that was her option for hydration). At the moment, we are at full volume milk with a few ice cubes in her cup. She likes her ice cubes. Go figure.

The good news about this is that once she gets used to drinking milk like this, we can add supplemental formula to it to give her more calories. We might be seeing the light at the end of the growing tunnel. One day we may have to explain to her why water is actually not white, but for now, she's drinking...and growing!

UPDATE

Thank you all for your patience w/ us the past few months. We've been busy...and gone! But we're back for now. We can't promise the frequent updates that we've given in the past since the end is near w/ Karsie's medical stuff, but we'll try to give information as we feel comfortable.

Quick hits from the beginning of the summer:

We took a trip to Yosemite and Karsie had a blast! She's a good little camper.

Karsie had to be taken into GI in San Diego unplanned due to an enormous amount of granulation tissue, which hasn't gone away....yet! Nothing came of it other than we tried to get rid of it by burning it. Didn't work.

Karsie got to spend a few weeks with her Nana and Papa. There were trips to the zoo, trips to Sea World, trips to the beach (which she hated). She had her second birthday party and a trip to disneyland (which wasn't in San Diego in case you were wondering).

Other medical news: here's a quick narrative of our journey.

Karsie has turned into an eater!!! Well, sort of. She has definitely stepped up her game. So, we were given permission to start weaning her off of her tube feeding with the hope to get down to nothing by the time surgery happens. During the weaning, we have had a bear of a time with her skin around the button. It has been broken down and covered in yeast for a lot of the summer. This has been due to leaking because her button has stretched her skin so much that her stomach liquids would pour out!

Since she was doing so well on her weaning, we decided to cut her feeding altogether and see how she did. She picked up her eating and did well. But then a few days ago her skin finally had enough and her leaking was as if there was nothing plugging her hole leading to her stomach. So, after permission from GI, we removed the button. That was an event! The idea is that the wound will heal on its own, but during the healing process, there's a gaping hole that spills everything that she eats until it closes. It didn't close right away, and it caused a trip to the ER to get Karsie something for pain because the stomach acid burned her broken down skin every time it leaked. Which was every time she took a drink. Which was always because she was so thirsty as everything was coming out. Poor girl! The good news was that it only lasted a day because it has started to close. Our only obstacle now is to get her back to eating like a champ because if she doesn't grow enough by the next GI appointment, they're going to put an NG tube in her nose for feedings. We're not sure how that's going to go with a 2 year old, and we'd rather not find out. But the good news is that she's been eating well. Grow Karsie, grow. No more button!

Back from Summer...News to follow

Thanks for being patient with us. We're public again and will share news asap.

Happy Father's Day

Some daddy-Karsie moments from the last few months...

Sliding at the zoo

March of Dimes- March for Babies

Hiking in the woods

Walking through the snow

Waiting to meet Pooh Bear

Giving flowers to Grandpa Gene

Wishing all the dads a great Father's Day.

And to Kevin, we love you and are so glad you are in our lives!

Love, Michelle and Karsie

Some Encouraging Signs

For those of you that have been able to get on, we apologize for any inconvenience with the blog. If you would do us a favor and post a comment on this blog and let us know you can read it. There are only about 30 or so that are signed up w/ us now, so hopefully since we haven't heard many issues yet (only a couple) that everyone's been able to get on.

As far as Karsie's progress goes, we're seeing some great signs. First of all, she continues to develop with speech and vocabulary. She is basically a normal kid at her age except her eating and her tummy.

Speaking of eating, we are pleased to see that she has really gotten the hang of it. So much so that we are starting our own make-shift process of weaning her off of the tube food. She was getting about 580 mL of food each day (400 at night and 180 during the day). It seemed to us that the days she didn't get her food at night (usually a mistake or she leaked a ton during the night) that she would be more interested in food during the day. So, we decided to try and slowly decrease her tube food and see what that would do (we did a bunch of research and talked with other parents before we tried).

The good news is that she was taking more to her food. The bad news has been that she still can't quite feed herself enough to sustain her weight. In fact, right now she's not really growing, but she's maintaining her weight. We've gotten down to 425 during the night and nothing during the day and she's still maintaining. Hopefully, she will begin to eat enough for her to grow soon.

The signs we're seeing, however, are positive. She likes lots of different types of food, and she's willing to try them. She is now shoving food into her mouth in bigger chunks. It used to be that she would eat little nibbles here and there, but lately (a few weeks worth) she's been putting handfuls in and working it well.

Hoping that this trend continues...

Memorial Day Vacation

Some of these pictures are a little out of order. We forgot our memory card, so we had to borrow pictures from others.

Uncle Dave made a massive fire to keep everyone warm. It snowed! A ton! Well, a ton for California wimps like us.
Daddy and Karsie go for a walk in the cold. It was beautiful.
Uncle Dave makes it "snow" during a down time. It actually snowed just fine on its own without the help, but it was fun to shake the snow from the tree limbs. Karsie enjoyed doing that later, but we didn't get a picture.
On our way down the mountain we took a picture of Karsie next to a Sequoia tree.
Our first day, we went for a walk and put Karsie in her Kelty carrier during nap time. She was out in less than 5 minutes.
Daddy and Nana and Karsie enjoy our only dry day.
Karsie LOVED the snow... that is when it stopped snowing long enough for us to enjoy it. That and when her parents were brave enough to step away from the fire long enough to take a picture.
Back on our first day, a Turner family picture.

GOING PRIVATE !!!

Friends and Family-

We've decided to make our blog private. We ask that if you would like to still follow our blog and you are friends or family that you email us at karsiegene@gmail.com. Give us your name and how you know us (in case we don't recognize your email address), and we'll give you access to the blog (assuming you check out). In order to have access you will need to have a blogger account, so if you want to follow and don't have an account, you'll need to make one. If you have problems with that, let us know in your email. We're so sorry to make this so inconvenient for our friends and family.

This post will be up for one more week before we go private, so if there's someone you know who has followed the blog and does not check it as regularly as in the past, please let them know.

Thanks.

K&M

Compression Wrapping

Since we've been saying we're doing compression wrapping, we thought we'd give some pictures of what it looks like. We took these pictures right before bed time (Nigh Nigh"t" time).

Karsie's Omphalocele might not be looking a whole lot smaller, but we notice that it's looser, and at times it does look smaller. Skinny little thing!

Right after we wrapped her....and tickled her. The wrap is a basic Ace bandage. We had to purchase tons of them because she keeps leaking on them and some don't hold up to the washing machine. We think we've found a set that works however.

Taking a couple jumps on the bed with her Medusa hair.

And the jumping continued well after dressing change.

You can get a good idea of how her organs are from this view. The bowels get pretty smashed with her bandage and sit fairly flat onto her with her compression wrap. However, her liver is a bit heftier and doesn't really have a place to go, so it protrudes out like you see here.

March for Babies Weekend

Here is a recap of our weekend and the March for Babies!

Getting started!

All the walkers getting started across the bridge... what a neat place to be.

Karsie actually walked a bit of the March for Babies this year! She had such a fun time!!!

When she got tuckered out she rode on Daddy's shoulders.

We took a detour at the end to see the blooming flowers. It was a great day for the walk.

On Sunday we headed to the zoo... Karsie had fun with Grandma going down the slide.

And watched the otters with Nana. It looks like Nana got a little smooch from this one. :)