I'm Not Fat!?!??!

Good morning everyone!! 

It was a pleasant surprise to find out that our pediatrician, Dr. Berent, came by yesterday morning to visit and see how Kalista was doing.  His office is close by, but it is a bit of a trek from his office to Rady Children's Hospital by foot.  Did you know that finding a pediatrician is actually a pretty tough job in itself?  Jen interviewed five or so different doctors before Kalista was born and made the final decision that this was the man to take care of her.  We hope he doesn't intimidate her too much since he is a tall guy at a whopping six foot, four inches...but babies don't know any better, right?

Kalista's personality is starting to blossom.  She is a very observant gal and likes to be in everyone's business.  She peers at the other kids or more like kid now (just one neighbor) to see what they are doing.  Kalista also keeps track of all the nurses to see what they are up to around the room.

This is her new area in the NICU Pod C.

Kalista was a bit of a naughty girl two nights ago and took out her NG tube from her nose.  Her little fingers are so mischievous sometimes and her strength in her arms are like gladiator's. When the two combine...we have incidents like this.  No worries because the nurses are great at replacing them.  Kalista did not like that and cried as they put in a new one.  Poor thing! Now, we are up and running again.

So the latest medical news about Kalista is that she is not gaining enough weight as they would like.  Did you know that babies are supposed to gain about 0.3 grams a day?  Kalista weighed 6 lbs, 10.8 oz when she was born and now she is 8 lbs, 3 oz. How fast is everyone else's babies growing?

She gets her daily dose of vitamins in addition to her other medications (Reglan and Prilosec) for her reflux to keep the food from giving her "heartburn" and (Actigall) for her digestion. The only side effect of Reglan is that it is a true laxative.  This hinders the process of food absorption since it flies right through her intestines and out of her bottom faster than it should.  The doctors decided to beef up her calorie content and help slow things down by adding in a bit of formula and some rice cereal to the breastmilk...YUM-O!  We hope this will thicken things up and help her retain the food better.  She's not fattening up like a butterball turkey...but she is a little chubs and that's what we like.

So we end this morning with a little baby snooze after a good meal.

We're Moving On Up

Kalista's OLD bed

 Kalista's NEW bed

She graduated from her isolette incubating bed to a crib style bed (as seen above). Awesome!!! This all means that we are heading closer towards "Operation Homecoming".

Kalista has also shown that she is a "big" girl now and moved into the NICU's Pod C.  This is where the stable babies go to grow and recover.  We were in Pod A originally, which is the main NICU area.  Bye Bye Pod A!!!

Pod C is equivalent to a penthouse in baby world.  She has gone from a busy, noisy baby city with 29 or so neighbors to serene, spacious baby suburb with about 7 neighbors.  Big difference!!  She also has a window to gaze out of from time to time.  Not the best view of anything, but it is an upgrade.

 

Her hearing test from last night came back and she PASSED. It amazes me how they can test a person so small and get accurate results or at least confident ones. 

Oh...the simple things in life that makes us so very happy!!

From this look on Kalista's face...we're not sure if she was happy with the move.

Oh wait...she looks much more happy with the move since her toys and pacifier came with her.

We settled in well to our new home and we even got in some good bonding and snuggle time.

Mom got to hold and snuggle with her.

Dad got to hold and snuggle with her.

We all got to snuggle with her.

(Too bad she wasn't looking at the camera)

Mr. Bumpy is what we will call her "O".  He is healing up nicely under all that gauze they wrap so nicely around him.  We had to do a little reduction surgery on the blue foam ring that goes around Mr. Bumpy today, since it was gigantic.  Imagine a huge foam ring that surrounded your belly button and the farthest edge of the ring went up to your collarbone. Every time we changed Kalista's diaper, her legs would hit the bottom of the blue foam and the top part of the foam would sock her in the face.  She looked so stunned every time it hit her.  Poor baby!!!

This is the new and improved blue foam ring.

Same 'ol Same 'ol

Boy...where are these days going?  I can't believe how I've been slacking at the blog.  My apologies!

Kalista is holding up her end of the bargain by being a saint of a patient.  All the doctors are pleased with the progress of the "O" healing.  New granulation tissue is growing and covering the area slowly each day.  She has not resumed bottle feeding for the time being because of the risk of aspirating fluid into her lungs.  The doctors are a little concerned that she has not been gaining appropriate weight.  I think she's a little chubkins, but who are we to judge.  They are going to supplement her milk feedings with a calorie buffer.  So instead of her getting 20 calories, she will be getting 22 calories.  She has gained a little over one pound since she started breastmilk two weeks ago.  I would say a pound in two weeks is pretty good.

She is also scheduled for a hearing test this evening as a regular check-up for the post-one month old exam.  Her most recent lab tests all came back normal.  Overall we are just waiting for her "O" to grow more skin and pray that nothing changes, since we are in a good spot at this moment in time.

Just Hanging Out

We saw Dr. Saenz, our surgeon, this morning and we are on track as far as her "O" goes.  He ended up removing all of her Gortex patch that laid over her the previously exposed organs. It appears that skin is forming nicely over the area that he exposed last week and hopes that it will continue to do so over the section he removed today.  When skin forms adequately, then we can take her home. She'll still have her bump, but we don't mind.

Kalista was enlisted in a Swallowing Study yesterday. She had to drink a contrast solution to image where the fluids go.  It appears that she is a silent aspirator; meaning that the fluid mostly empties into her stomach, but a little bit trickles into her lungs.  This is definitely not a good thing because fluid in the lungs can lead to infection and pneumonia. At this point in time, she will be using her NG tube 100% of the time for food intake until she grows and develops adult-like control.  Can't imagine what it would feel like to get fluid down the "wrong pipe" all the time.  Ouch!!  We'll find out in four weeks, when they repeat the test, to see if improvements have been made.

Happy Father's Day

                                                   

Yay...Visitors!

Hallelujah!  We are able to have visitors again.  Unfortunately, not everyone can visit.  It's like VIP access to a club.  If you are not on the list....you don't get in.  Trust me, there are some tough nurses that can take you down if you tried.

Auntie Kat got a chance to hold Kalista when they came to visit this week.  They are die hard Kalista fans.  After they heard about the visitation ban being lifted, they drove back to San Diego after a long day at Disneyland just to see her and then drove back home to the Bay Area the next day.  Did I mention that they love to drive??? (Smiles)

**Parent Update **

Jen's pregnancy carpal tunnel issues have finally gone away and can not only wear her wedding ring again, but has regained feeling in her fingertips.  Crazy how swelling can affect a person! She spends most of her time at the hospital nowadays and is on maternity leave until September. In her spare time, she is working on small projects around the house and sewing/crocheting items for the baby. 

Matt is celebrating his first week and a half back at work and can't wait to celebrate his first father's day with Kalista. In his spare time.....he naps. Parenting = lack of sleep.  Such a simple equation we all know!

Eating Is Such A Chore!

Never would I imagine writing these words "eating is a chore".  From a foodie family standpoint, eating is never a chore. It is a pleasure.

Kalista has made large strides in the past week in the food department, but for her.. eating is a chore.  We started last Wednesday with the introduction of breastmilk by bottle  The initial amount given at each feeding was 5 mL and has slowly increased up to 60 mL (about two ounces).  Pretty good for never trying anything in her mouth besides tubes and more tubes. We are so proud of her!!

Because of the "O", her stomach was involved and in turn gives her reflux.  This causes her to be more gassy and food easily comes back up the way it goes down. In the past day, the reflux has gotten worse and she is eating less than expected.  The medical team decided to take action. She is now back to the nasogastric (NG) tube- the tube that runs from her nose to her stomach.  Kalista still gets the bottle or is breastfed during feeding time until she's "done" eating and suckling.  The remainder of her milk gets infused to her stomach through the NG tube so she takes in her full 60 mL at each feeding. We are all hoping that she will continue to tolerate more volume of food on her own and be rid of the NG tube....but for now, it will do.

Her "O" is improving slowly.  Dr. Saenz, our surgeon, is happy with the way things are going and we are on the right track.  Tissue growth has begun and is continuing to grow slowly day by day.  The skin is the largest organ we have, so it's not surprising how slow it grows.  The ultimate goal is to have skin tissue grow over the remaining part of the "O" that did not fit in her abdomen and do surgery later to improve the cosmetics of the area.

Well folks, it looks like it may be awhile before the munchkin comes home.  We hope it'll be before the summer ends.

Busy Bumble Bees......Buzz

My oh my has it been a busy few days.  Our family came to stay at Hotel Lam for the past four days.  It was packed with activities from Jeanette's graduation, graduation dinner, Sea World, the San Diego County Fair to Baby Kalista visits. We had a blast seeing our family and spending time with them! 


Rady Children's Hospital NICU has not lifted the visitor ban yet, so our families are still not allowed to visit Kalista bedside. Boo!!! Instead, they were allowed to see her through the windows.  We hope that the next time they see her, she will be out of the NICU.

Kalista has made some large hallmarks in the past few days too.  We have been attempting dry breastfeeding- which means there is no milk on tap for the thirsty.  She gets super frustrated since it's such a tease, but she finally got the hang of latching on yesterday morning when we worked with Ruth, the lactation consultant.  This was the goal of dry breastfeeding.  We know practice makes perfect and not to give up on the journey to get there.  Matt has been a big cheerleader for the ladies in his life.  Go Team Lam!!!


When we came into the NICU last night, we were so happy to discover that Kalista has officially weaned off of her nasal cannula and oxygen support.  That means no more tubes in her nose. Now that we can see her nose better, she is starting to look more like Matt.  It may be that they have the same haircut right now. Notice the resemblance in these two pictures here???

I'm One Month Old!

Mom and Dad just savored the last few minutes of Kalista's one month old birthday.  Can you believe it?? She is already one month old.

She has learned a few things this month.  She learned to smile, frown, pout and best of all "fake sleep" when she doesn't want to do something.  We usually see this fake sleeping when she doesn't want to take her bottle. It's actually kinda funny and cute at the same time.

 Grandma (Yin-Yin) and Grandpa (Yeh-Yeh) came down to San Diego with Auntie Jeanette, Auntie Kat, Uncle Jimmie, Alyson and Alex.  It was also Auntie Jeanette's graduation from UC Irvine.  She graduated Magna Cum Laude....such a smart cookie!  What an awesome structural engineer she will be!

Is That A Smile?

Could it be?  Is that a smile we see?

I think she was pretty happy that her parents came to visit. We even tried breastfeeding today...but we all got a bit frustrated, so we'll try again tomorrow.

Let's Get Physical

Another good day in the NICU and getting some exercise into the schedule.  Kalista met her occupational therapist today, Casey, to work on her arm and leg exercises.  Now that Kalista is pretty close to reaching her one month birthday, we also want to make sure she is also reaching all her developmental milestones.  She has also acquired quite of bit of toys in the past day or so...from colorful chains to a musical soothing toy.

She is making great progress with her feedings. She has gone from 5mL up to 15 mL as of this evening and enjoying every drop of milk.  She is destined to become a "foodie" like her parents.  We have begun reading to her a book by the name of " Yum Yum Dim Sum" by Amy Wilson Sanger.  She probably dreams of cha siu bao and siu mai when we leave.

Milestones Galore

Kalista is such a good patient!

We came in to see her this morning and her whole entire care team were leaping with excitement to tell us that she did not need her CPAP breathing device, nor her feeding tube and lastly the IV in her foot anymore.

We were also excited to hear that she started bottle feeding today!!!  Yay!!! Even though she gets 5 mL (which is about 1 teaspoon) at each feeding session, a little bit goes a long way for her.

Last night we each took turns holding her.  Kalista's CPAP device on her head (in the picture above and to the right) was so bulky and made her look like an elephant or a creature from Star Wars.  When her mouth opened, it created a funny sounding "whoosh" from all the air rushing through the tubes.  I'm sure she is happy that she no longer has to wear it since it smooshed her cheeks and ears.

Late Nights

We are back from Rady Children's Hospital and it is slightly past midnight.  This seems to be the trend lately.  This is now our home away from home and we have a family starting to grow of doctors and nurses.

This evening we were able to hold Kalista in our arms (which is a rare occasion with all her IVs and gadgets) and give her a good hour and a half of being spoiled.  We have realized that she has made a best friend in the NICU.....her pacifier...and it's vanilla flavored too.  She gets really mad sometimes when that little thing falls out of her mouth.

Kalista is off her ventilator, but is now wearing a CPAP apparatus that helps keep her lungs inflated.  Evidentally, her right lung did not want to stay expanded on its own after she was taken off the ventilator and the CPAP machine does that for her.  We are awaiting a few more stable chest  x-rays to confirm that her right lung is fine before they can take the CPAP away.  Because of this, they are holding off on her feedings because the air will only push the food around in her belly.  Not a cool thing since gas pains can get pretty bad!!!!  Ouch!

As the nurses say in the NICU, five steps forward and then three steps back..... ugh!!!

Peek A Boo-I'm Here!

Kalista Makena Lam was born on May 12, 2010 at 7:46 am. She weighed 6 lbs 10.8 ounces and was 18.25 inches long. She is truly a miracle in our lives.

It has been a long journey for this little girl already. Little Kalista was born full term at 38 1/2 weeks with an omphalocele (om-fal-oh-seal).

What is an omphalocele you might ask?
It is a type of defect in the abdominal wall in which the intestine, liver and occasionally other organs remain outside of the abdomen in a sac because of a defect in the development of the muscles in the abdominal wall. It happens in about 1 out of every 5,000 births. A giant "O" (omphalocele) happens in about 1 out of every 10,000. As we found out, it is a pretty common condition. 50% of babies with "O"s have genetic anomalies, but we were lucky that all our chromosomes can back normal from our amniocentesis.

There is no known cause if it is not genetic in nature and is classified as a mishap in nature. From reading on the internet, baby's internal organs leave the body around gestational week 10 through the umbilical area and then return back into the body within that time frame. Kalista's internal organs decided to skip that plan and ended up staying outside her body at the base of her umbilical cord, forming a sac around the organs. She was classified as having a giant "O" by her surgeon, meaning that multiple organs were involved. For Kalista, her liver, intestines, spleen and stomach were all within that umbilical sac. Luckily, we found out months before, so it was no surprise on the day of her birth. The only way to fix the omphalocele is by surgery.

She has made it through three successful surgeries (2 for her belly and 1 for her heart) in the past two weeks already and we anticipate many more in the future until we can get all her tiny organs back into her belly. She has done really well and has been such a superwoman through it all!!!

After three weeks in the NICU, our latest milestone is that Kalista is now free from her ventilator!!! She can breathe on her on, but all the pressure from her tummy makes it hard to breathe sometimes. (Just imagine eating a really large meal and that tight feeling when you breathe is how she feels all the time.)

Oh yes....the other exciting news is that Kalista is also now able to take down breast milk. She is still getting her essential nutrients via IV, but now they can feed her breast milk through a NG tube in her nose. We will eventually get to bottle feeding and breastfeeding...but we're taking baby steps.