Surgery or No Surgery...That is the Question

We had our appointment today with the reconstructive/plastic surgeon, Dr. Gosman. The final verdict is.........(drum roll).........NO SURGERY! We really weren't anticipating that she was going to say "Yes".

This plan was determined by two good reasons:

#1: Kali is still so petite and tiny

#2: The G-tube site poses a monster infection risk.

SO....our ultimate goal, before any surgeon will possibly do anything, is to get Kali on a full eating course and be able to be G-tube free. It is so easy to say...but such a hard battle to go through.

Good news though...Kalista has now added cheeses (provolone, cheddar and mozzarella) and taro bread to her "OK" list of foods. She's like a chipmunk-mouse when she eats. Nibble..nibble ....nibble....store....maybe swallow....store some more...nibble..nibble...

Latest Medical Updates

Whew...we have had plenty of visits to Rady's this week and to Kalista's second to last physical therapy session.

Last Wednesday we had Kalista's almost final PT session. We impressed Ms. Tami with all of our new found moves. Kalista walked around everywhere...climbed up stairs and even danced a little bit. Since there were no obvious concerns, we will be back for our last PT visit when Kali turns two. Yay!

On Thursday, we saw Dr. Gosman for our follow-up visit to see where we stand regarding the tissue expanders. Just one look and she knew Kalista was still too small for surgery. Besides her petite stature, her g-tube is another concern. Dr. Gosman would love to be able to do the surgery without Kali's g-tube in place. The possible mixture of stomach contents and the material for the tissue expanders are a big risk factor for complications...not good. So our job until our next follow-up visit in January is to get Kali eating up a storm so we can wean her off her tube.

Kalista is too smart! Just today, she held up her tubing and food container to Matt, letting him know it was time to eat. Ugh!!! At least she knows one way for food to get to her tummy...we just need to teach her the other way.

So bottom line...no surgery planned.

We saw the nutritionist today and because our insurance has decided to drop all nutritional coverage, we have been responsible for some pretty expensive formula for the past two months. Rayna, our nutritionist, gave us the thumbs up to switch Kalista to a more commercial full nutrient formula, such as Pediasure or Boost for Kids, given that she can tolerate it well. We'll see which one Kalista likes the most and go from there.

It was a packed day; we even have feeding therapy/OT this morning. Kalista joined the other two boys in her group for another uneventful week. She just sits and watches one boy chow down food without chewing (his parents are constantly doing the heimlich maneuver) and then we have another little boy who chews, but doesn't swallow. Kalista is another category in itself...she can chew and swallow, but doesn't want to bring foods to her mouth regularly. She is slowly getting better....she tried grapes today for the first time and will eat yogurt melts and star shaped rice puffs if we put them in her mouth for her. One baby step at a time....

No Surgery Planned

We saw Dr. Gosman, our plastic surgeon, this morning and she told us that Kalista is still a little too petite to have the tissue expansion surgery at this point in time. We will see what the verdict is in October, when Dr. Gosman is back from maternity leave.


Meanwhile, we are going to start compression wrapping her "O" to see if we can inversely expand her abdomen by putting a small amount of pressure on her belly. She doesn't seem to mind unless she is eating and then she gets a bit fussy. We were told to take it off for mealtime, but to have it on pretty much the rest of the time.


Here are a few success stories from compression wrapping:

Blair's story

Zack's story

Caitlyn's story

We hope we can add "Kalista's story" up there one day.

Back From the Bay (updated*)

We are officially back in San Diego after our mini trip to the San Francisco/ Bay Area.

It was a pleasant, yet non-stop family and friends filled five days. It seems like we need a vacation from our vacation. Maybe it is because we took the road trip route instead of flying.

I'm home everyone!

We made it in a record time of 7 1/2 hours (which included our 45 minute gas and rest stop break). Matt did all the driving since Jen was sandwiched between Bella and Kalista in the middle row. Poor Jo-Jo had to ride in the back of the car in his crate with all our luggage. Let's just say it was a well packed car.

We stayed the first few days at Matt's parents' house and spent time visiting friends and family. The remainder of our trip, we stayed at Jen's parents' house and enjoyed some down time. Kalista got to meet up with her baby friends while she was up there and even met some new ones.

Kalista and Beya had their first playdate

Spending time with Beya and her mommy

Kalista likes touching (more like poking) eyes and mouths now.
Watch out!!!

No tears for Tyler this time around

Kalista with Kylah's mommy

Kalista and Kylah also had their first playdate together

On our trip, Kalista got a chance to catch up with her cousins and play with them since they had the week off for spring break. Cousin Alex has a way of getting Kalista to smile when no one else can....he must have the magic touch! She has a natural migration towards him when he's in the same room as her.


Even Joey and Bella took some time to absorb the Northern California fresh air.

Joey sun-tanning again

Bella snoozing mid-morning

Kalista found one of her favorite items...the remote control

She even decided to do some yoga

We had many large dinners....three to be exact. We got to see pretty much everyone on both sides of the family. Jen's mom also celebrated a milestone birthday and turned 20 again for the third time. Kalista finally got to meet her aunt Dorothy and second cousins "once removed (???)", Naomi, Ethan and Ryan. This whole "once removed" family tree labeling is mighty confusing and ended up being one of the table topics ironically.

Grandma Susan's birthday banquet

The Lam Family banquet

Kalista with Grandma Susan and Great-Grandma Tam

As timing would have it...we were up in the Bay Area in time for a Chinese tradition similar to "Dia de los muertos (Day of the Dead)" called Qingming. This is the day where you tend to the graves of those who have departed and pay homage to their spirits. We took most of Monday on our trip to visit our loved ones who have passed; Matt's step-grandmother, maternal grandparents, Jen's paternal grandfather and maternal great grandparents. We burned incense, gave our respected bows, brought flowers and food (oranges, in our case) as part of the Chinese tradition. We even went to the temple in San Francisco Chinatown to pay respect to Matt's great relatives. At the end of the day, never did we imagine how tiring it was traveling to every resting place. We are trying to show Kalista the various Chinese traditions our family has followed in hope that they do not get abandoned as we move on from generation to generation.


On a different note...we have some medical and milestone updates for Kalista:

1. This IS the month of doctor appointments. Our visit to the dietitian is next week and we will be starting a new formula pretty soon instead of breastmilk and milk-based formula. Now that Kalista is getting older, we have been recommended to change her over to a higher calorie packed formula/nutritional drink called Peptamen. It looks like an expensive form of Pediasure, but is more easily digestible. We'll let you know how it goes in the next few weeks. As you may know...the ultimate goal is to end the gagging/retching and get Kali to eat and drink by mouth. Kalista has been more willing to put things is her mouth since we can see two little bottom teeth sprouting and the gum massages have been well received.

2. Our appointment with Dr. Gosman, our plastic surgeon, got pushed back another week, so we will have to wait until the very end of April to see if we are ready for tissue expanders as a precursor to Kalista's final stomach flattening closure surgery.

3. We have a sedated echocardiogram and cardiology appointment also planned to make sure her little heart can handle another surgery because of the WPW arrythmia.

4. Kalista can also show off her standing and partial crawling skills at our next physical therapy session in two weeks. She can pretty much scoot herself to any piece of furniture now and pull herself up to standing without any help. Ms. Tami is going to be so proud!

Standing next to the sofa after pulling herself up

Whew...that was our trip in a nutshell!

No Botox for Me Please

We saw Kalista's plastic surgeon today, Dr Gosman. We also met Dr. Wong, who is Dr. Gosman's assisting doctor. They took a peek at her "O" and at the area next to it to see if there was enough room for tissue expanders. Because Kali's "O" is fairly large, they feel that there is not enough room for expanders at this time and are thinking she may be a better candidate closer to the age of one.

The whole purpose of today's visit was to see where we are at in terms of placing tissue expanders for a cosmetic closure in the future. The goal is to expand enough healthy skin and muscle tissue to replace all the scar tissue over her "O". The expanders are like breast implants that are placed under her ab muscles and will need injections weekly to expand the implanted sac. The doctors said the expanded skin will have to be equal to the size of her "O" and can take up to almost 6 months to achieve that size, since they can't stretch healthy skin too fast otherwise it becomes thin and weak. We hope that by the time she is one, the "O" may be a lot smaller and not need as much expansion. We can't imagine two big bulges around her abdomen right now.

For more info you can visit: Tissue Expansion

No Tears

Kalista laying on the pediatrician's table

Kalista saw Dr. Berent (pediatrician) today for the second time this month. We had to see him two days after our discharge from the hospital and then today for Kalista's big "four month old immunization" shots. We had a list of questions to ask Dr. Berent too...poor guy....but we're glad he took the time to listen and answer all of them. It's so true what experienced parents say when they tell you to write down all your questions before you see the doctor...because it works. Twelve questions answered in a matter of ten minutes...pretty efficient! So back to Kalista....it was the big shot day and she did so well. Matt held her and nurse Suzy worked her speedy shot giving skills. Boom boom boom....DONE! No tears!!!. We know that our little girl has been through so much more, that a few little shots would be easy peasy. We hope in two months that Kalista will be just as tolerant and forgiving for her six month old set of shots. Cross our fingers!

So in the grand scheme of things, Kalista is going to be seen by many specialists in the next few weeks and months for all the areas we need to address due to her omphalocele. She truly has a fuller schedule than her parents. In the next month we are scheduled with four different specialists: Dr. Saenz (surgeon), Dr. Mehl (neurologist), Dr. Nigam (cardiologist) and Dr. Gosman (plastic surgeon). Somewhere in the mix we are supposed to see the dietitian/nutritionist and occupational therapist for the feeding issues. Thank goodness for our smart phones or we would be all over the place!