It's Over--We're done!

This will be the last post of this blog.  With social media serving the purpose this blog used to serve, we haven't exactly been good at updating.  However, we have been made aware that our blog is being used by doctors and nurses to show parents what they're in for, so we'll give it some closure.  Literally.  Karsie has just had her closure surgery and is completely done barring any unforeseen complications.

Since our last blog, Karsie has been getting tissue expansion.  She had two small ones put in, but the balloon on her right side somehow slipped under the third layer of muscle tissue and dropped into her abdominal cavity, causing her pain every now and then.  So, we had to take her back to get the one balloon replaced.  The good news with that was that the doctors were able to advance the tissue by putting in a larger balloon and expanding it to look like this:

This is what Karsie's belly looked like the day before her closure surgery.

The plastic surgeon told us at the second expansion surgery (to repair the shifted balloon) that she was close to being ready for closure.  Michelle took Karsie (and our new little boy, Reuben) to San Diego every couple weeks during the fall to expand her balloons until sometime in December.  Then, we were told she was ready for closure.  There was talk that she was not quite ready to close because the surgeons weren't sure she would have enough muscle tissue and skin to cover, but when they took us in the back to tell us how the surgery went, they said they had enough to close and that she did great.  This is what she looked like just after surgery in the ICU next to her old belly:

On our last post, we talked about how frustrating it was that Karsie was in so much longer than we expected.  Turns out, it was a blessing in disguise because by going through that, we knew how her body was going to respond.  We knew we needed to put in a central line.  We knew we needed to keep the NG tube in so she wouldn't develop an ileus.  We knew she needed to have an epidural to keep the narcotic level down, which slows down motility.  So when the big surgery came, she had literally NO complications.  She was only in the hospital for 11 day, and for her, that's "extraordinary" as the doctors said.  The fact that she was bouncing around the day we took her home was amazing, albeit a stress for her parents to keep her resting.

And this is how she looks now, her skin being continually rubbed with ointment (which is why it's so shiny):

The brown at the top is extra skin healing, which the plastic surgeon left in case later on she wants a belly button.  They can apparently just take it from there.

So...this journey started almost exactly 5 years ago to this day, and is finally done.  We're not really sure how to feel yet.  So much of our life and energy has been spent either dealing directly with or in anticipation of this surgical process, and now that it's done, it feels somewhere between relieve and disbelief.  But we appreciate all the prayers and support.  We'll close out with a picture taken on Valentine's Day of our kiddos.  We hope this blog will continue to help out any of you who will go through this process in the future.  It's emotionally draining, but worth every second.  God bless and good luck.

Home At Last

We know it's been a couple days since we last posted, but we've just been so exhausted.

On Tuesday, Dr. Saenz agreed that it was best not to go back to the OR, thank God.  There was a very, very large mixup in communication, of which neither us nor Saenz had anything to do with.  In any case, it was agreed we would see how Karsie could do with solids.  She did very well, practically ordering some of everything on the menu, and like good toddler fashion, picked and grazed on little bits of each (except Cheerios.  She demolished all her Cheerios).

On Wednesday, Dr. Saenz walked in at 8:00 in the morning and said she's good to go as far as he's concerned.  However, since he was only a consult and not the doctor on the actual surgery, he couldn't sign her out.  So, we waited...and waited...and waited and finally at 6:00 p.m. we were discharged, drove back home and got in around midnight.

Karsie has been doing better each day.  She wanted to sleep with us the first night we got back because she was scared, and she's still been in pain, but she has been in better spirits each day.

Now comes the tricky part.  We will be going to San Diego for appointments to expand her expanders, which will make her feel uncomfortable, and in our opinion, will most likely be fairly painful.  She has already suffered a lot of emotional trauma from a surgery that wasn't expected to be as rough as it was, but now we are going to be letting the doctors "hurt" her some more.  We have a pretty tall order to try to explain to her why she is having this done to her without making her feel like her difference (a big tummy) is bad, all the while trying to convince a soon to be 4-year-old that the pain we're putting her through is a good thing.  We've been preparing her for this as best we can, but she now knows the pain that comes with each surgery and procedure, and we are praying that she doesn't lose her fight and will during all of this.

We always knew the physical hurdles we (Karsie) needed to overcome during this process.  We just didn't prepare for, or at least fully understand, the emotional hurdles that were headed our way.

Some More Irritating Developments

Yesterday was the polar opposite of the day before it.

Everything started out well.  She woke up in a decent mood, went to the bathroom, passed more gas, and began to walk.  We played in the art room with paint and a very cool dollhouse.  She didn't put out any more liquid from her NG tube, so it was eventually taken out.  She was put on a modest clear diet (water, juice, jello, popsicles) and she was even happy and energetic enough during the day to dance around her room batting balloons.

Then, we noticed her central line was leaking.  Of all the freak things to happen, this one is completely strange (although when you're talking about a kid who has a defect affecting every 1 in 10,000, strange becomes normal).  So, after two different surgeries to put in the central line to begin with (one of which prompting the surgeon to say he's only experienced having to put in the line again every two years or so...again...of course it would happen to Karsie), it's still not working.

So at this point, Karsie has been sustaining herself on the clear diet she was put on and taking oral medication.  The good news is that she's doing an "okay" job of it.  (Okay means she is not drinking enough to be well hydrated...just hydrated...which hopefully is good enough until she can gain more strength by eating).  The bad news is, we're kind of at the mercy of our surgeon.  Due to some horrible communication yesterday, we're not exactly sure what he wants to do or what he even knows about since he wasn't at the hospital.  We hope he will let Karsie try to sustain herself and take out the line (as it's useless anyway) in the process.  Then, it's up to her.  However, we don't know what he's going to say.  We just don't want her to go through another trip to the OR.

Ugh.

A Rough Day but a Promising Night

Karsie had the worst day since being in the hospital this stay, and it can all be blamed on her shoddy veins.  Her bowels had softened a bit during the night, which was a praise.  She was more comfortable and looked as good as we've seen her.  Then, her IV blew.  After 5 attempts at resticking the IV back in (outch!) the team decided to go with a more permanent solution.  They took her into the OR for a procedure to put in a central line.  That is, they make a small incision just below her neck and run a line through a vein into her heart.  They did this and then sent her back to her room.  Then, they came back and said after looking at an x-ray that the line took a wrong turn and went up into her neck instead of her heart.  So, back to the OR Karsie went and redid the procedure.  Three times in the OR in 3 days is not fun.

However, during all of that, she began to pass gas (we've never been so happy for farts) which meant her bowels were waking up.  Throughout the evening, the swelling in her omphalocele has decreased significantly and she is feeling much better.  She was able to walk a few steps and take a ride in her wagon around the Med/Surg unit.  At this point, we're hopeful to be done soon.  Her bowels have deflated, they should be working properly soon, which means she will be allowed to eat and drink soon, which will give her energy, causing her to be able to move around and walk more, which increases motility in her bowels, and it keeps going from there.  That's the hope.  Here's to a good night.

Pictures

Here are some pictures from this hospital stay:

One of the few times she's been awake...for just a couple seconds.  NG tube inserted to deflate the gas in her bowels.

Not feeling well at all.  But resting.

First night.  Not feeling well.

Waiting to wake up.

Brave girl walking back to surgery with the nurse.

Getting dressed for surgery.

Hours before surgery.  She's only allowed jello and water.

Even More Woods

Things have not been going well for our little bug.  Last night, she spent most of the night retching, so much so that she had a few bloody retches (obviously this was a freaky thing, but the doctor said that it was from the intubation tube irritating her esophagus, and it was later confirmed as it went away).  On top of that, her bowels became distended again, causing the doctors to suggest giving her an NG tube to suck away the gases from her bowels.  Therefore, we are stuck in the hospital until things settle down.  Then, she needs to eat and drink, which she doesn't want to do because she's gagging, which is caused by the gases.  So, hopefully, things will start improving afterwards.  But a 4-year-old with a new NG...sigh.

A Rough Time

Karsie's surgery went well, but her recovery is not so fun.  I guess if you told any normal person that the doctors were going to make two incisions in her sides, separate her rectis and obliques, put in a plastic balloon on each side, fill it up a bit, then sew her up, that normal person would say "ouch".  However, for some reason, we were led to believe it was not that invasive of a surgery (most likely because it didn't mess with vital organs).  While that may be true, recovery from it is far from easy.

Karsie had a very rough night and has been in quite a bit of pain.  We spent all night trying to manage it well, but she's still very much in pain.  We'll be here at least another night, and we're hoping not to have neighbors again tonight.  It's hard to recover when two three-year-olds keep waking each other up.

Hopefully she'll get to come home tomorrow.

She's out...

Thank goodness we didn't have to wait as long as we did last time we did this. Last time they put us in a small room and we waited over an hour for the surgeon to talk to us. This ti,e it took about two minutes

Karsie did well and she is sleeping off her anesthesia. We're waiting for her to wake up so we can give her her Popsicles (her pre-promised treat for after surgery....that and enough Disney movies to make her daddy go crazy). Thank you for all the thoughts and prayers.

She's in....

It's hard to type on this iPad so ill make it short for those of you waiting for an update. She went in at about 2:50 and we've been told it takes about two hours. Hopefully we'll have some news soon but at the moment we are just waiting. Karsie was very brave and walked in all my herself with the nurse.

Time to Start Up Again

Well...it's time to dust off the old blog.

Yes, it has been almost a year since we last posted anything.  We've always wanted to use the blog as updates on Karsie's omphalocele progress, and since there hasn't been anything medical to talk about lately, we've left it alone.

Karsie has had such a great year.  She is growing and eating (still not as much as the doctors would like, but she's going at her own pace).  She is happy and really bright.  We can't believe there was ever a time the doctors thought she might have serious brain damage.  That has definitely been an answer to prayer.

She's almost four now, and it has been easy to forget there's still lots to do for her to fix her omphalocele.  And that starts up again today.  Karsie will begin the process of closing this afternoon.  She is scheduled to have her tissue expanders put into her flanks/obliques/whatever her side muscles are, today.  The way it's been explained to us is that they will filet her muscle tissue on her sides and insert small balloon-like expanders (similar to breast implants).  Then, over the next few months, they will slowly increase the size of the expanders with saline.  Finally, when she looks like she has three omphaloceles (here real one and two large filled balloons on her sides), they will attempt to close her.  Most likely she will have another round of that in a year or two depending on how everything goes.

So, this afternoon, if you happen to read the blog that's been silent for a year, pray for Karsie's tissue expander surgery.  There was a time when these two parents were much more used to telling our daughter goodbye as the surgeons took her away.  Now, we've had years to have her to ourselves, and this is again a very scary process.  Thank you all.

Kevin and Michelle

Spring Fun

 We have had a lovely spring.  We enjoyed some time away... and had a few doctor's appointments as well.  We saw the GI docs and they said Karsie was growing... "on the Karsie curve."  She is still small and below the growth curve, but she is growing.  They helped us figure out a good option for antacid to give her since she has started to have more reflux.  They encouraged us to slather all Karsie's food with butter and to use heavy cream or half-and-half in place of milk with her foods.  

 We also met with the plastic surgeon.  We were anticipating scheduling her surgery, but the doctor thinks Karsie is just too small for the surgery to be worth the pain and stress to Karsie's body.  She really needs to grow a lot.  So, we still wait.  I am guessing it will be a couple years before she is long enough in the torso.  The goal had previously been to have everything finished by kindergarten.  I think that is just not totally realistic at this point.  Karsie is too petite.  While we were surprised by this news (since we were planning for a summer surgery), we feel good about this plan.

 Karsie had such a fun time at the beach.  She loved playing in the sand.  She did not love the water, and was especially upset when a surprise wave got her wet up to her waist.  

 We also took a trip out to the flower fields.  Some of my favorite pictures of Karsie as an 8 month old are from the flower field.  Karsie had an especially fun time this year because she could run around and play with all the flowers.

 She is also really into smelling the flowers.  Any time there are flowers around, she likes to pause and smell them.  

 We had a lovely Easter with family.  We enjoyed the time away and had a nice time with both sides of the family.

 Karsie had a fun time hunting for eggs with some friends.  She looks like she is ready for diggin' clams!  She really understood the concept this year of finding the eggs and putting them in her basket.  She thought that was super fun!

Hope you have had a wonderful spring!!

We Are Still Around

We have not, in fact, fallen off the face of the planet! We are still around.

I realized it has been a full three months since our last post, and while not too much has happened around here, Karsie has continued to grow and thrive.

We spent a lovely holiday visiting family and enjoying time off. Karsie loved the idea of Christmas and we embraced both the holy side and the Santa side. She loved playing with her nativity set and talking about the key players. She would sing to Baby Jesus. She also named the wise men. We had Sarah, Muck, and Puck. She enjoyed having her elf, Happy, hide in a new spot each night as well. And, of course, on Christmas morning, she loved having presents... and she was spoiled! Lots of gifts from friends and family to play with.

Karsie has been doing a great job eating and growing. She has discovered, and fallen in love with popcorn! She especially likes flavored popcorn. She also loves hot dogs, chicken, quinoa, tater tots, EGGS, carbs in all forms- especially potato chips and french fries, and cookies.

She is a little jumping bean! She loves to jump... a past-time she learned from her Papa and has perfected in honor of Peppa Pig. Yo Gabba Gabba has been replaced by the British pig (we are quite happy with this transition)! She has also discovered a few classic Disney animated features. She loves Little Mermaid ("yittew nermaid"), Beauty and the Beast, and Tangled. She also loves Toy Story and Monster's Inc. Most of which she was introduced to during a nasty bout of the stomach flu that held our whole family (plus visiting Grandma and Auntie Mandy) hostage.

Karsie loves to do "paints" and "chalking" at home. She is anxious for summer so she can go in the "swimming water" too. She is so much fun to be around, and though she has moments of being two and three-quarters, she is typically a joyful little girl. She cracks us up all the time with the things she says and her little personality.

Happy Spring!

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!