Wednesday, April 28, 2010

Doctor Appointments

Since our walk, things have been a bit slow (as new information goes...not watching after Karsie...that's never slow). Kevin had to drive back to Bakersfield for work and Michelle stayed in San Diego until Tuesday for Karsie's G.I. appointment. This made for an extra long drive for Kevin as he drove from Bakersfield to San Diego, picked up the girls after the appointment, and drove back to Bakersfield in a day. Needless to say, work was interesting today for him.

The G.I. appointment was good. She weighed in at 15 lbs. 8 oz. That's totally nude with no food in her belly. They said that she has done excellent with weight especially after the tummy bug, and she continues to be on the growth chart. Still a tiny little thing, but she's on. Her length is 26 inches, which isn't much from last time, but she's still right in the middle of the growth chart for her birth age.

The topics of conversation mainly revolved around moving her toward oral feeding and away from the G-Tube at least during the day. We talked about starting to reduce her Reglan (which is next to nothing anyway, but that's the first to go). Then the plan is to start and reduce her day time feeding and let her start to rely on her oral eating. She has currently picked up her breast feeding to about 4 times a day (up from once or twice on a good day). She has also started to eat rice cereal 2 or 3 times a day (up from nothing). On top of that, we've started to feed her to gravity, which is basically filling up an empty syringe with her food. What used to take an hour now takes 4-5 minutes with that. And she's handling it. With her rice cereal we have noticed her taking to vegetables more than fruit (we mix in a fruit/veggie with her rice cereal). We will start to introduce meats and such soon. She is starting to get the solid foods (a la rice cakes) eating a bit more. All of this was good with G.I. but they want to start to change one thing at a time. We figure, with the plan they gave, that we may be done with the day time G-Tube by her first birthday (is it crazy that it's only a couple months away?).

Today Karsie had her pediatrics appointment here in town. Dr. Suen was very pleased with her development, and to celebrate he had his nurse give her two shots. Her weight here was 16 lbs. 8 oz. So we're somewhere between 15.5 and 16.5.

We get about a month off before we go back in for more G.I. stuff, so Karsie gets a little break. However, she gets to start back with her PT and OT appointments again, plus speech therapy tomorrow. Lucky girl.

Saturday, April 24, 2010

March of Dimes


We marched for Karsie today, and for others that are preemies/birth defected babies. We saw lots of neat stories and lots of faithful families still supporting little ones that they lost. It was inspiring and heartbreaking at the same time. However, the walk was fun and a great time to spend with family.
After the walk we took pictures of our team - Team Scripps Mercy Hospital. Karsie's shirt was way too big (as it was an adult small) so we had to have a makeshift onesie with the patch put on by Nana.
Ladies time. Auntie Christine, Nana, Michelle, and Karsie.
The beginning of the walk was s...l...o...w - as all walks/runs are. Balboa Park did not have wide enough streets, but luckily no one was in a rush.
A little break to take a picture. Karsie zonked out right after this.
Auntie Christine and Uncle Todd with Karsie.

Aaaaannd sleep. Karsie pretty much napped the rest of the walk. It was good that she stayed awake for her cameo.
One of the coolest things that we saw was a family that posted signs on their shirts that labeled them as preemies with their birth weights and how early they were. There were two boys that were now probably 10 and 13 years old - very healthy looking - that were 1 lb. and 4 lbs. respectively. It's neat to see how far they've come. One day Karsie will get to march with something like that. Maybe next year.

Thursday, April 22, 2010

Playing with Karsie

video

Sorry for the horrible camera work. The angle was so weird because Kevin was trying to hold Karsie and shoot the film. The mirror was the only good angle. However, it's the sound that's the best. This is a new game that we play with Karsie. One of us hides around the corner and stomps a la Jurassic Park style. She is real good now at finding us using the mirrors when she hears it, but it's still thrilling to her when we come around the corner and attack her with kisses.

Monday, April 19, 2010

The Bottomless Pit

We know we're jinxing ourselves when we post something like this, but we'll say it anyway. At the rate she is eating, we will have no food left in a couple of weeks. At some point a day or two ago, Karsie decided that she wanted to eat everything in sight. She has upped her breast milk frequency, has downed all of her rice cereal (and then some) and has increased her frequency there too. She is either making up for being starved for a week, going through a growth spurt, or (and hopefully) she has turned a major corner in her eating. Either way we welcome this appetite with open arms and aren't really sure what to do with it other than keep feeding the beast.

Saturday, April 17, 2010

9 Months







Getting Back to Normal

For the most part, everything is back to normal in the Turner household. Karsie is up to full feeds again and doing really well. She actually has a little more of an oral appetite than normal, which is great! Yesterday at her aunt Becky's she gobbled up a big bottle for her (despite being on continuous feeds) and she did it for us later that day too. That's good for two reasons. First of all she's hungry and wanting more food. Secondly, she's taking a bottle, which is something she usually doesn't do. Maybe Becky has the magic touch :). She is up to 33 mL an hour with her normal two (2-hour) breaks. We now will start to condense her back to where she was before she went to the hospital, which is 110 mL an hour 3 times a day - and then continuous at night.

The only thing that lingers is an obvious loss of weight. Karsie looks pretty skinny again in her neck and arms and legs. We don't have a weight yet since we haven't been to the doctor's and they didn't weigh her on discharge. The last weight we got was 15 lbs. 8 oz. but that was when she went in and was filled with fluids. We're pretty sure that she was over 15 but not by much. Hopefully she fills in quickly. However, we went to OT yesterday and she was doing awesome! She actually might get to the point where she can crawl believe it or not (Pinky and all).

She is 9 months today, so we'll have our usual pictures of her in her onesie with the "9" on it. But right now she's napping, so it may be a bit. She's been learning how to throw a good temper tantrum, so she wore herself out in her crib today. Good little stinker! Thank you again for all the prayer. We're sure at some point we'll need it again.

Wednesday, April 14, 2010

Time for Bed

Karsie came back home today. Lots of driving. Very tired. Must sleep now. Busy day tomorrow. We'll update later...zzzzzzzzz.

Monday, April 12, 2010

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!

Sunday, April 11, 2010

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.

Saturday, April 10, 2010

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...

Friday, April 9, 2010

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.


Thursday, April 8, 2010

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.

Wednesday, April 7, 2010

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.

Tuesday, April 6, 2010

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.

Monday, April 5, 2010

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.

Sunday, April 4, 2010

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!

Friday, April 2, 2010

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!