Some Pictures to Tide Over the Grandparents

A Little from Column A, A Little from Column B

Karsie has been experiencing quite a variety of food lately. She has pretty well learned the mechanics of eating/chewing even. In fact, one of the things that we have decided is that she likes the solid foods much better than the puree foods.

A while ago we asked a question on the blog about feeding Karsie and we said we would talk about our decision or something we were working on after all the suggestions you gave. Turns out, we didn't really decide anything. We did a trial run on not feeding her until she took something like a bottle (with a do or die time at 2:00 p.m.). In other words, we skipped her 10:00 a.m. feeding so she would get hungry enough to eat, which she does do when forced. Whatever she didn't take during that time we would absorb during her other feedings throughout the day. The first day was pretty good. She took the bottle and drank about 70% of what she would have to eat. However, the other days did not go so well. She didn't take the bottle at all and we had to cut our losses and feed her at 2:00 anyway so she got her fluids, which proved to be hard because we were giving her the whole day's worth of food in half the time, which made her uncomfortable. So, we shelved that idea.

Michelle has been drinking the special tea (this is being written by Kevin, so I don't know what it's called), eating oatmeal, hydrating herself, etc. in order to increase her milk supply. We're not really sure how it's going because Karsie does like to nurse and she usually empties Michelle, so we hope that it's working.

As far as where we go from here, it really looks like we're just going to have to wait until Karsie is on all solids with breast milk supplements and cut the G-Tube when she eats enough. Good news is that she LOVES solid food. She's been eating puffs like a pig for a while. She absolutely loves avocado and she can handle mangos. She is off and on with yogurt, but she can't get enough cheese (neither can her dad). She also has been introduced to other types of crackers that are kind of like the puffs, but they are bigger so she has to hold them and chew on them. She does very well with that and enjoys it. We're just going to have to wean her off the tube with G.I.'s help. There are other things we have yet to try, and we're still trying the sipee cup, but her interest is there and we may just have to be a little patient.

Karsie's Continual Academic Progress

Yes, you heard it here first: Our daughter is a genius! She has always done well on tests and she has passed yet another.

During her OT appointment today, which turned out to be a grueling hour mixed with physical therapy, she passed all of her goals they had set for her. This means that she is well on her way to the next phase where they will write out new goals for her. We're waiting for a call from Harvard any moment now...

Karsie's First Words

Karsie's first word was on Mother's Day! What was it?

"Dada"

Ironic little child.

A Milestone Made

We have now had Karsie home longer than she has been in the hospital - even counting the two returns we have had. We continue to be grateful for our little one.

Fish!

The title is appropriate, but it will be especially funny to a family member. Karsie LOVED the fish at the aquarium. However, the two ladies to the right of her almost got punched by Michelle. One in particular kept saying, rather loudly, things like: "Look at that baby's belly! It's so BIG. Look, look! It's just so big and enormous!" On the video you can actually hear her say "Look at that kid. Look at the belly on that kid." We're usually tolerant of curiosity because, well, seriously, it's rare you see a baby with Karsie's condition. But this lady had a different tone that brought out Michelle's Mama Bear instinct.

Thank You for the Help...plus an update

First of all, thank you to those of you who took the time to give us your input on Karsie's feeding situation. We will have more information on what we decided to do in the next day or so, but what we will say today is that we took plenty of advice and we're running with it. We'll see how it goes. There were quite a few things that we left out or didn't clarify on our situation, so we'd like to clarify some of those as well as give you a little picture break with each.

Before we get started with the feeding and Karsie details, we need to speak to Anonymous who left the comment ending with "You know who I am =)". If possible, shoot us an email telling us who you are. Michelle and Kevin have a bet going on who you are and we'd love to know :).
(Picture: Karsie is no where near Owen's size, so this is handy camera work). And yes, she's leaking out of her G-Tube.
Feeding situation: While it would be very nice to feed Karsie on demand, she still needs to get a certain amount of formula daily. She needs at least 22 oz of fluid (formula/breast milk) a day. We can play around with her schedule, but at the end of the day, she still needs that amount. The only ways that we know what she is getting is either pump it into her stomach (which is what most of her feedings are), or if she takes it from a bottle. Since she doesn't take a bottle, we are left with the pump as the only reliable measure of her intake to keep her hydrated. Unfortunately, breast feeding is just a supplement at this point because there's no way to tell how much she is getting, and even so Michelle cannot produce nearly enough for Karsie's need. Therefore we are stuck to the tube, hope that she takes to a bottle, or wait until she eats enough solid foods to get the nutrition she needs.
Bottle problems: Karsie does not have an oral aversion, but she has a bottle aversion, as we said before. She loves to eat when she's hungry, but won't touch a bottle. That problem leaves us no alternative to eating (at this point) other than feeding her by tube. That is why we were asking about increasing milk supply so that if needed, Michelle could give Karsie enough food just breast feeding. It's still impossible to measure, but since it's the only kind of milk Karsie will take by mouth, it can help her practice in case we can get her liking a bottle. Ideally, we'd rather her not have to take a bottle, or just breast feed (at this point the formula is necessary), but the bottle is the only measurable way we can do it. Michelle has been drinking some of that tea and eating oatmeal to increase supply, as well as staying hydrated and such. Hopefully that will help soon. We'll have more on the bottle later.
Eating solids has been fine, but since rice cereal is all she eats (and puffs) she is not getting the protein and fats that breast milk/formula provide. To replace formula with solids will require her to eat other foods more frequently like meats and fatty foods. Good news: today we fed Karsie some yogurt and avocados. For the record, she loves avocados, but it's a new taste for her, so lots of gagging followed the feeding, and she is slower at it. She was fun to watch tonight. Since avocados are higher in fats and yogurt in protein, Karsie is stepping closer to eating foods with higher calories which will get her off the tube quicker.
Karsie has started to pull herself up. We spent the other night with her just helping her do situps and pulling herself up. She seemed to enjoy the workout. We're pretty sure that any day now she's just going to start crawling (even PT said that today). She looks like she wants to get into position, but hesitates. Soon...
Karsie doesn't seem to enjoy the heat that Bakersfield is threatening. This summer should be real fun. She had a pretty decent fever the other day that we were cautiously watching for a few hours. It broke pretty quickly after we noticed it, and she went back to normal real fast. We think it may have to do with teething, or just something to do with the weather (if that's possible). Speaking of teething, Karsie looks like that episode of the Simpsons where Maggie gets a tooth from the alien on one of those Halloween episodes. She has a gnarly fang. It's awesome!
We went to the Long Beach Aquarium (as you can probably tell by the pictures) for Grandma's birthday this past weekend. Karsie had a blast! She loved looking at all the fish and funny people too. We have a funny video to post of her looking at the fish. We'll try to get that up this week.
"Yikes! That crab is BIG!"
NEMO! That's what every kid said when they came up to this tank. And the oceanographers conveniently put a "Dorie" fish in there with the clown fish. Karsie was not as in love with this tank as others, but in about two years she will be.

Again, we'll have some information a little later on steps we have decided to take. Like good little scientists we like to have data on a period of time before we post results. Thanks again...

Food Question for You

Since our last post on the food, Karsie has slowed down quite a bit on the volume of food she consumes. However, the frequency of her feeding has kept up. When we visited the speech therapist she said that Karsie really is going at a normal pace for a "new eater." Therefore, we pretty much will just check in once a month. The only thing we're really looking for is to make sure she doesn't develop an oral aversion and that her interest is there. Eventually the volume should come.

She's doing fairly well on solid foods. She eats rice cereal here and there. Sometimes she just doesn't have an interest, but she usually eats it. Her favorites seem to be apples and sweet potatoes mixed with the rice cereal. She does okay with puffs and she's able to eat them whole.

Here are our problems however: Karsie will NOT take a bottle. We're really not sure what to do with that other than keep trying here and there. Usually this wouldn't be a problem if she nursed real well, but we've run into a supply problem. Michelle is running out. Karsie likes to nurse and would do it more, but Michelle really just doesn't have enough any more to compensate for Karsie's bottle issues. This is normal around this time for many moms, but usually this accompanies good solid food eating as well. We want to wean her off of her G-Tube, but we need to see how much she gets from oral feeding, and with her not taking a bottle and Michelle's milk supply low, that's really hard to do.

Any suggestions on beefing up milk supply or tricks to get a kid to take a bottle?

We know eventually she'll make it up in solid food eating and that will take the place of the milk, but it would make it a little easier (quicker too) to supplement with milk now.

Thanks.

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.

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.

Playing with Karsie

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.

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.

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.

Time for Bed

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

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.