Fresh Air

Yesterday, Karsie was on 75% Elecare and 25% pedialyte... and she did very well. So this morning she went to 100% Elecare. So far she is doing very well with it. However, it will not surprise us if she has another set back. We have had the chance to hear from some other mom's of omphalocele babies (Moo's) and they have said that tummy bugs take their kiddo's a long time to get over as well. It is all about trial and error and letting the body get back into the swing of digesting food. This made us feel much better.

Since Bug was feeling good and the weather was great, we headed to the zoo to do some walking around and animal watching. Karsie loves to look at the greenery and I love to watch the animals... so it is a mutual good time! And since the rain had passed and the sun was out, there were lots of animals out and active. It was a great day to be there!

A personal favorite... but I forgot to take Sophie's picture with her family!

In honor of my brother... the UCI Grad.

This was a special treat... the mama koala with her 11 month old joey!

Bright eyes!

Does this remind anyone else of the book Verdi? Not quite the same snake... but close!

This guy was coming over to say "hello" to Karsie! She didn't care much.

As many times as I have been to the zoo, I had never seen anything in this exhibit... but today I saw both these Glass Lizards (who have no apparent legs/feet) and the other inhabitants.

Never smile at a crocodile....

Karsie did enjoy watching the otters... there is a glass water viewing area and she could see them swimming about... she really was amused by that!

It was just that kind of a day!

Rough Night

At around 4:00 a.m. Karsie stopped handling her feeding. We had to stop her food and give her about an hour and a half break. We've been feeding her pedialyte and will start introducing her food back into it here slowly. We called the hospital and they said we did the right thing. What this means is we're going to have to split up for the week and keep Karsie here just in case she needs an IV. It was rough for Karsie but rough for us emotionally too. This roller coaster ride didn't end in the NICU (but we wish it would have). The good news is that she has been happy and tolerating her food since we vented and fed her pedialyte.

Photos from Karsie's 4th Hospital Stay (She's Home Now)

Here are a few photos. We didn't take a ton of pictures, so these are all within a few days, but we got some.

This is our only Bakersfield photo. She got to ride in an ambulance from here to San Diego. They strapped her into a gurney and she rode in her car seat. That was a very long night.
Karsie didn't like a lot of things about this trip, but she especially didn't like the cast that they put on her left arm to keep her from pulling out her IV lines.
We put this picture up for all our friends that watch How I Met Your Mother. We don't watch it hardly at all, but we did see the episode where Barney doesn't take a bad picture. Karsie is very much is like that. Just before we snapped this, she was SCREAMING her head off. Just as we clicked she looked up and made this face. Priceless.
Here's a more realistic photo of Karsie's feelings about the hospital stay.
Karsie had a pretty nasty tumble onto the side rail of the hospital bed. We had to put up the picture of her goose egg. It looked pretty bad for like 10 minutes. Then it went away quickly. Kids are resilient.
Later in the week, Karsie started to feel better and take pictures like these.
Discharge day. Karsie was obviously feeling well enough to tackle Mom's burrito during her morning read.

She's home now and doing fairly well considering. They sent us home on continuous feed, so it's our job to start condensing again. We didn't ever get to go to our other two appointments that were supposed to be this week, but we got the one surgical appointment down, even though it didn't produce the best of news. Oh well, we know what it's like to wait. Thank you for all the prayers and support.

Getting There

Karsie had a decent night last night. She was again put on half volume formula and half volume Pedialyte for the entire night. For the most part she handled it very well. There were a few fusses and grunts and a questionable awakening which turned out to be just a real grumpy girl that needed Tylenol, but the rest of the night went well.

Today the doctor came in and said they were going to go up to full strength formula again and watch her for five hours. That will put us around 2:00. Once that is finished if she is tolerating it we believe she will be discharged. It looks like the bug is leaving her body. Hopefully for good. So far it's been 7 days, and it has infected at least 5 people that we know of (excluding Karsie). We have yet to see what damage it has done to Karsie's weight. We've been able to notice a weakness in her muscle strength and we think we notice a smaller bulk in her, but hopefully that will come back soon.

To 2:00...

And Again

Karsie had a real rough night last night. After a while on full feeds she started to have the same symptoms that made us bring her in with the swelling of the bowels and leaking G-Tube site, retching, and irritability. The thought is that she is like a balloon where there's too much substance than there is room, and her virus is keeping her bowel from working properly so when she fills up she bursts at all ends. So they stopped her feeding for a while and we're trying it again today. We're going up by 5 mLs every 3 hours now instead of 2 to give Karsie a chance to adapt and hope that the virus is dying enough for her bowel to start to work again.

Plastic Surgeon

So Dr. Gosman came by and looked at Karsie. For what it's worth, we love her too! Not only is she a wonderful surgeon by credential (because we haven't experienced her work firsthand yet) she really took the time to talk with us about Karsie and such. She was really impressed with how much she has grown. However, it still looks like Karsie is too small for the expanders any time soon. The space between her hip bone and the bottom of the rib cage is too small for anything yet, so we are to schedule another appointment in about 6 months for her to look her over. Even then might be too soon. We also learned that this will probably be a staged surgery where they put in small expanders for a few months, then bigger ones, then bigger ones, and so on and so forth until they feel she's big enough to handle the closure surgery. So we keep on keeping on.

Update (4-8)

Karsie has been feeling much better lately. They have her on pain medication, which has helped tremendously, and she seems to be fighting off the bug as her gut is less swollen and is actually really soft. Right now they have her on 10 mL of pedialyte per hour and they will increase her 5 mL every other hour until she reaches 26 or so. They they will start to introduce her formula back into her feeding. If our math is right that should put us into early tomorrow morning assuming she handles all of it. Also, there is talk of changing her formula a bit. That probably won't do much to Karsie, but our insurance provider will be much happier.

We did have to cancel all of Karsie's appointments today, but there is hope still. When we called to get a hold of the plastic surgeon, it sounded like it was possible she might stop by at some point today if she has time. Who knows if that's going to happen, but her secretary seemed to think it was a better than average chance. If she can't we'll just have to reschedule, which would be a bummer since we're ready to get this show on the road.

Blech!

So there's not much to report from yesterday except that Kevin and Michelle are very sick along with Karsie. They have tried to give Karsie pedialyte and she hasn't really tolerated it. She has taken some orally, but most of the time she doesn't want any. Based on our illness, that makes total sense as we have not wanted to eat at all. It looks like we're going to have to just wait this out until her bug is gone. We know we're doing the right thing by staying away, but we can't help but feel like bad parents for not being with her during this time. It looks like our appointments that we've been anxiously waiting for are not going to happen tomorrow as scheduled. Hopefully we can reschedule soon.

Bug's Bug

To give a quick update (as neither Kevin or Michelle have been in much today)...
Karsie is okay. She is still in the hospital and the surgeon says her case is not surgical! It would appear she has a major stomach bug... some kind of flu perhaps. She is being reintroduced to foods (pedialyte) and she will be increased as long as she tolerates the food. We have been so blessed by our families/friends who have been in the hospital all day with Karsie.
Last night, Michelle was sent to her parents house around 2am because she was super tired and not feeling well. Lo and behold, she is sick. It would seem that she probably has whatever Karsie has (same symptoms). She has therefore been banished from the hospital. There is a chance she has something different... and even if not, it would be terrible to pass this along to other patients as well.
This morning, Kevin was relieved by Nana to go get some rest, and upon waking up from his nap, he is also sick. His symptoms are slightly less than Michelle and Karsie's, so we are unsure if it is the same sickness.
Karsie is being so generous with her bug... she is learning sharing so early! We are hopeful this is a short-lived sickness... as it is terrible! Poor Bug.
We will continue to post updates...

Update (4-6)

So it's just after 2:00 a.m. and we're sitting in an emergency room. Albeit a different emergency room. Karsie was having a rough night as stated before. You know when you just know that something's not right with your kid? That's what was happening. Sunday right after her second nap she was really fussy and was obviously not feeling well. She was having a hard time with the feeding and gagging a lot more than normal. She seemed to perk up during the night so we didn't think much of it until morning. At about 4:00 a.m. on Monday Karsie went back to being in obvious pain and it didn't let up at all. Along with her crying came an obvious swelling in her omphalocele (her bowels were harder too) and runny stool. Finally, the last straw was when her G-Tube site started to pull back bile along with her formula and it looked as though much of her food was still there. The bile started to leak out of her G-Tube and around it and it started to become thicker like stool. Bottom line was she needed to go in.

We called Children's hospital in San Diego and they told us to come in. However, living 4 hours away without proper hydration (because we dumped out her food that was making her uncomfortable) we decided to check her into a local ER to put in an IV and get her vitals. We checked in around 10:30 a.m. and didn't leave there until 8:00 p.m. During that time the doctors didn't see any obstructions in the x-rays taken, her blood work looked normal except for an elevated level of white blood cells, and she started to poop (although it's not pretty...as if poop is). In other words, this is more suspicious of a viral infection or a stomach bug than a bowel obstruction, which was the immediate concern.

The doctors in San Diego still wanted to see us (especially the on-call surgeon) so we put Karsie into an ambulance that drove her all the way there, and we followed her. So we are sitting at Children's waiting for their own blood work and x-rays to compare before we get word on what they plan to do. Hopefully this is just a mild flu that she will just have to push through. We'll have more answers when we know more. Since it's been around 24 hours since we've had sleep and close to that when we were able to eat again, we may be a bit delayed tomorrow, but we'll post when we can.

Thank you for your thoughts and prayers.

Prayer Request

Not 15 minutes after we posted the Easter pictures Karsie started having a rough day. She was really irritable and really gaggy. Long story short, she needs to go back to San Diego and be checked out for a possible bowel obstruction. So we request prayer from anyone willing to give it. We are really worried about her.

A Slew of Easter Pictures

These pictures (above) were taken just before Easter church. Karsie was SO happy and we could not press the picture button fast enough.
From left to right (Michelle, Karsie, Becky, London). Right after Easter service.




Karsie's good day continued.
Surrounded by Easter toys and gifts. Let it be known that our stuffed animal capacity is overflowing as you can see. Nana and Grandma have lots of pent up spoiling from waiting 7 years for grandkids.


Karsie needed a change, but her mood didn't. Happy times!

Five Things Friday (plus a few more)!

1. Karsie makes this face a lot... she likes to spit through her lips... and it is super cute!
2. We went for a walk with an old friend and her new baby. How fun!

3. Karsie and Bode (Nana's dog) are both teething and chewing on everything!

4. Karsie got a super cool Easter basket... and she fit inside! Thanks Nana and Grampa!

5. Karsie with Grandma... playing with a cool rattle toy!


6. More spitting.

7. Big smiles at the flower fields!

8. Isn't she just the cutest! Sitting up on her own!

9. Bode wanted to join Karsie in the tub... what a fun time!

The Beginning of the End

Today was a good day. There isn't much to tell, but a lot to tell at the same time.

First we had a G.I. appointment. The doctor was thrilled with Karsie's growth and basically said to keep the same thing going. Even though she has plateaued a bit she's still right there on the growth charts for weight, length, and size proportions. We got some medicine to put on her G-Tube site because there is some granulation tissue starting to grow around it, so that needs to be stopped, but other than that, there's no changes. We were having some leaking issues with the G-Tube, but the doc said that because of Karsie's angle to the stomach, there's going to be some leaking. She weighed in at 14 lbs. 13 oz, which is a more accurate weight than last time. Plus, she was completely empty of food which was not the case last time either.

Then, we had lunch with some friends. It was awesome to catch up and for them to see Karsie's growth and development. Very fun!

Finally, we saw Dr. Saenz in surgery. He was also thrilled and we started to discuss the beginning of the end (hence the title of this blog). We will definitely have more information next week when we see Dr. Gossman who is the plastic surgeon, but it sounds like she wants to put in the expanders around a year, which would make it June/Julyish when she gets the tissue expanders. After that, they stay in for a few months and then Dr. Saenz will call it and say when it's time to close her up. So, we are making some huge assumptions here, but it wouldn't be unlikely that we will be done with all of this by Christmas. We know that's wishful thinking, but it's possible to do that now. All of this will depend on what Dr. Gossman thinks next week, but Dr. Saenz was thrilled by all the skin and space that is there already. We are excited and terrified at the same time. More details to come...

Zoo Day Monday

Karsie had a great time at the zoo today! She really enjoyed all the riding around in her stroller!

Sophie met a few of the animals today too... but we didn't make it over to the giraffes.

Karsie almost was eaten by this giant predatory bird... good thing we were able to grab her!

An updated family picture in the turtle/duck area... the last one we took here Karsie had just been discharged!

Karsie and her godmother... celebrating a fun trip to the zoo!

Tomorrow begins our slew of appointments starting with G.I. and then surgery. We may or may not have any news about upcoming events. We'll keep you posted.

Five Things Friday

1. Karsie still loves bath time... and Kevin found his knack as a hair stylist!

2. Karsie had her first trip to the local ice cream shop... she didn't partake... but she had fun none-the-less!

3. Karsie is doing very well at PT/OT this week. She is getting much better at holding her balance while sitting unassisted. She has also begun practice on hands and knees. The therapists really believe we will be able to teach her how to crawl... and we are pretty excited about that. She will hold herself up using her arms for a couple minutes... it is amazing how quickly she is getting these new skills!

4. Karsie loves to be outside now that it is warmer. She has these awesome shades... and she finds them amusing. She also loves to go for walks and play in the sunshine! We only have a precious few weeks of spring before the temperature goes above tolerable... so we are trying to take advantage of the great weather!
5. Week of appointments... we are heading into a week of lots of appointments... on Tuesday we will see GI, and Surgery (Dr. Saenz)... and then we still have the usual PT, OT and hopefully speech appointments (speech was put on hold, waiting for some paperwork).

Have a great weekend!

Karsie's New Cry

Karsie has a new cry. It's called "Feed me now or I will keep screaming!" We're not used to this. The following is our list of things to check or do when Karsie cries. 1. Put her to sleep 2. Stand her up 3. Change her diaper 4. Sit her up 5. Clean out her nose 6. Give her a binky 7. Play with her. Now there's a new element that we have come across. The other day we were out to dinner with friends and she started to fuss. She was chewing on her fingers, sucking on anything she could get into her mouth. She started to chew on any toy we gave her. To any normal parent this is an obvious sign of hunger. Not to us. We started checking her omphalocele dressing, looking at her G-Tube site to make sure it wasn't hurting her, all of what's normal to us. All the while, Karsie was practically gnawing off her arm in hunger. Had she drawn a chart that said FEED ME and had a picture of an empty stomach we still might not have gotten it.

Nevertheless, we get it now. Since her condensing, she has been figuring it out just fine...it's her parents that need help.

Quick Stats on Karsie's Feeding

Karsie is halfway through her big condensing this week. So far so good. However, the biggest increases are yet to come. In two days she went from getting 33 mL an hour all day to getting 45 mL an hour at 10 a.m., 2 p.m., and 6 p.m. Two days after that she was given 55 mL an hour at the same times. She ends each feeding when she reaches 110 mL. Therefore each increase takes her less time to get to 110. Today starts the big increases. She is just starting to get 80 mL an hour, which will take her about an hour and 20 minutes to complete a feeding. The hope is that she is able to handle this and get hungry so she starts to eat by mouth more. If all goes well, starting Monday she will be increased to 110 mL an hour, which is where we will stop for the time being. This is really important for her, so we're praying that she handles it. If not, we at least have made an increase and we will back off and give her a bit to get used to the new increases. But here's hoping...

Karsie's First Steps....sort of

Yesterday we were at physical therapy and they were working with Karsie on her trunk muscles. Right in the middle of working she got real fussy and wanted to stand. Michelle helped her stand up as the therapist was moving mats around and Karsie lifted her right leg and stepped forward toward the toys. She really liked the singing block stacker. She has since done it three or four more times...with aided help from her arms of course.

8 Months!!

It was a warm day for her 8 month birthday. So we have outside pictures. She is 2/3 of a year old! However, we've only had her for 1/3 all to ourselves. It's been a good time. Karsie has been handling the first part of her condensed feeding wonderfully. It's been nice having her off the tube for a few hours at a time. Tomorrow we increase again to two hours on. The big jump doesn't happen until Monday, but each increase is a bit interesting. So far so good.

Karsie LOVED her seat in the grass.

Commence the Condense

There were two reasons that we decided to call G.I. a little earlier than our appointment. First of all, Karsie's speech therapist (eating) wants her to be hungry for her to work with Karsie and this continuous feeding does not make Karsie hungry. Secondly, Karsie is moving...a lot. Today we actually found her under the rocking chair after approximately 30 seconds. It's pretty hard to have a moving child attached to a food bag, so we thought we'd call and see what could be done. G.I. gave us permission to start condensing...at our discretion (but for a week). Imagine that! Giving us some say in our daughter's health care! So we have made a plan for Karsie to condense her down to eating one hour on and two hours off by next Tuesday. So far so good. She is being fed for 2 1/2 hours and then gets a half hour break today. At night she is fed continuously. This should be interesting when it comes to eating by mouth now.

Happy Birthday Blog!

One year ago today we posted our first blog entitled "Introducing Karsie's Blog." We have since written hundreds more in honor of our daughter Ms. Karsie Gene, who has in our opinion the most miraculous story. For those who have not read Karsie's blog in the beginning we give you permission to forego spring cleaning in place. It's a pretty cool journey.

To many more happy posts...

Babbling Karsie

The TV is on at the beginning. That's not all Karsie.

Five Things Friday

1. Appointments... Karse is now on the schedule for PT, OT and Speech! Our pediatrician wanted to wait until after she got her flu shot boosters... and the end of the flu season before sending her to all these appointments... and now that time has come... so Karsie will be going to 5-9 appointments a week! On top of all this... mom and dad will be doing the exercises with her at home too! She is going to be the workout queen!

2. Bug still loves bathtime... she loves to splash... and in her tub at home, she can use her feet to make some cool squawking noises... and this amuses her. She also loves to try to drink any water that runs down her face... or the water she can suck from the wash cloth!

3. There is Jaque the Peacock... and also Mortimer the Moose... and she loves them both! I think those huge eyes grab her attention!

4. Karsie LOVES to read books... she has a few cloth books and she will lay down with them and read them to us. She loves when we read to her... she loves turning pages... she loves looking at the pictures... she loves eating the pages. She has a couple pop-up books that fascinate her... and she plays peek-a-boo with the pop-up characters. I have been trying to get a video of her reading her books... but when she hears the camera turn on... she gets distracted... she also loves the camera!

5. She is standing... all day long... she just loves to stand up! When she has been sitting or laying down for a bit... she does this super cute little scoot and grunt thing... to tell us that she wants to stand up! She especially loves to watch herself stand in the mirror! She gets to excited to see herself standing!