Guess What?

It's official..... Kalista's getting discharged tomorrow.

We spent most of today going over what we are supposed to do regarding her feedings, taking care of her G-tube and going over discharge paperwork. We are in the process of slowly taking back all our "baggage" that we moved in over the few weeks- toys, clothes, Boppy and all her belongings.

Our shield is almost ready! The tummy shield for her car seat needed a little retouching for the final fit. Check it out in the picture below! Isn't it cute? Jesus at SCOPe Orthotics and Prosthetics did such a fabulous job! So fashionable with ladybugs and flowers. He is a tummy shell master!

Kalista looks like she is ready to make the big move, but will miss her neighbors and all her nurses, practitioners and doctors.

There's No Place Like Home

A, B, C....1, 2, 3....

We have been busy cleaning the house for our homecoming event. We're still not sure when that magic day is, but we are ready! The nursery is all set and the dogs have been prepped. We have disinfected the house from top to bottom.

Our well wishes tree in the nursery

Kalista's friends are waiting for her

At the hospital, we have been reviewing everything in Kalista's discharge binder and making sure we have our "Caring for Kalista's G-tube" proficiency list checked off by the nurses. Kalista is doing well with her full feeds and is now on the feeding schedule that she will be coming home with. We will be feeding her every three hours during the day and continuous overnight. Her feeds during the day will be over two hours with the goal of condensing them over time.

As you can see, Kalista is back in her jammies...which only means one thing. No more IV! She is so happy and smiles all the time now. She is also a chatty gal who babbles to us and those who are willing to listen. Kalista is enjoying her toys more and is starting to reach for items in front of her....like our camera strap.

Kalista is still not the biggest fan of the pacifier, but enjoys sucking on her fingers and hand. She has also started sucking on her tongue while she sleeps. It's too cute because it looks like kissing fish lips.

Her tongue is no longer white, but the normal pink color now. Thank you fundo! It seems that her reflux is under control and the only medication we will probably have to give her at home is going to be Prilosec, an acid reducer. They stopped her reflux medication, Reglan, right after she had the surgery. Yay...less medications for us to remember... the better!

Hello Weekend!

Her hair is starting to develop its own style, a fauxhawk.

Kalista had to be restuck again yesterday to start an IV. This time they gave her an arm brace called a "No No" to keep her arm straight. Since Kalista is so strong, she annihilates all the little foam boards they normal use with just a bend of her elbow. When her IV is no longer needed and is removed, she will be able to wear her cute outfits again. Until then, she'll just hang out in her birthday suit, blankets and diaper. Thank goodness it's summertime!

Kalista and her "No No" arm brace

Hip Hip Hooray! Kalista is coming up to her full feeding amount very well. She is currently at 30 mL/hour and we will hit our goal of 33 mL/hour by noon tomorrow. This is an exciting milestone because it means that she is steps away from coming home. We still aren't sure when she will be discharged yet..but we know it can't be too much longer.

Dr. Saenz, her surgeon, should be making an appearance on Monday to take a peek at her and make sure she is recovering well from surgery. He also told us right after surgery that when Kalista reaches her full feeds, then she can go home.

Cross our fingers! We hope baby comes home this upcoming week!

New Meal Plan

Looks like we are starting a new feeding regimen. The fundoplication surgery has left Kalista with a smaller stomach than before. So, we have changed our plan and are feeding Kalista on continuous mode to get her stomach stretched back to its initial size. This means she is fed all day. We started yesterday at 17 mL/hour and increasing 1 mL every 6 hours until we reach 33 mL/hour. Prior to surgery, Kalista was at 45 mL/hour. So, this should be no problem for her!

Kalista's medical team has recommended this feeding program because she showed some signs of irritability after her feedings two days ago and it may have been a little too much for her to handle. When Kalista comes home, it looks like she will be fed continuously overnight and throughout the day, fed in multiple hour increments, known as bolus feeds. It's not set in stone yet, but whatever the final plan is...we will make it work. When we get discharged, someday soon, we will also be enrolled in the Little Eaters Club to work on her oral aversion issues and get her eating by mouth again. Can't wait to meet other babies!

Auntie J's visit

In the flurry of all this surgery talk, we didn't forget that Auntie Jeanette came down to visit us and Kalista last week. Here are a few photos from her visit:

Jeanette introduced us to Bananagrams and we are now big fans on this fruit shaped word game. It is now up there in the favorites with Scattergories and Cranium.

Wolff-Parkinson What????

Kalista sporting a new hair-do after surgery

Kalista is like a baby onion. With each layer there is something else more juicer to digest. Sometimes it makes you tear up...sometimes not. Today...no tears. Kalista is healing up so well. She started back on plain 'ol breast milk this past weekend through her new G-tube at 5 mL to start and then increasing about 5-6 mL every 12 hours until we reach 90 mL or maybe more since she is a bigger girl now.

Kalista enjoying food in her tummy once again

So the latest layer of the peeled onion is that Kalista's heart is fluttering a little abnormally. There was a previous concern about a heart arrythmia that was noticed right after her reduction surgery and the cardiology team has been just monitoring her since then. They told us that they suspect that she may have an arrythmia called Wolff-Parkinson White Syndrome, but they can't confirm it. On Saturday, they took a chest x-ray, which showed a slightly enlarged heart...pretty normal for just having had surgery. They also hooked her up to a 12-lead EKG to see the conduction of the heart a little bit better. The EKG report indicated an extra blip (delta wave) and that her heart is dextro-positioned (slightly position more toward the right of her chest), which we already knew about since she was born.

Cardiology did their full work-up today and talked to Dr. Perry (the guru of electro-conduction of the heart); in the end it doesn't seem like the cardiac team is very concerned since Kalista is so stable. They are just going to continue to keep an eye on her but nothing more. That sounds good to us...no need to worry in the end!

Evening Update 8/20/10

We saw Kalista this afternoon and into the evening. She is doing so much better than yesterday. Miracle healing must have happened overnight. Kalista's blood gases were excellent enough today that they extubated and removed her from the ventilator. She has a nasal cannula now and they will eventually wean her off that. She is now down to one IV in her left arm, but it looks like they will have to put another one in as a back up since the existing one is looking like it may be done. She needs them so that the nurses can administer her antibiotics and all the other medications.

Her G-tube is looking good with mild oozing. Jen was able to give Kalista her first feeding of pedialyte through the G-tube. Exciting!!!

For the time being, Kalista looks much happier and in less pain than yesterday. She still looks a little puffy, but is able to open her eyes now through the puffiness. She also did a lot of talking and babbling today as if she was venting out her frustrations and complaining about what has been happening to her for the past three days.

My 100 Day Birthday!

According to Chinese tradition, we announce Baby Kalista's Chinese name to the entire world on her 100th day of life. Just like when panda's are born in captivity.

Here is an excerpt from NatGeo's News Watch November 2009:

"One hundred days old today and weighing in at 12.5 pounds, San Diego Zoo's panda cub marked a milestone. The male cub is two feet long from head to tail. Following Chinese tradition, pandas go unnamed until they reach 100 days, the zoo said. To announce the panda's official name, the zoo will host a public naming ceremony on Tuesday."

His name is Yun Zi and still resides with his mom, Bai Yun, at the San Diego Zoo.

Photo taken November 12, 2009, by Ken Bohn, San Diego Zoo.

After reading this blurb, we just realized that Kalista is almost the same size as a panda cub. She is currently weighing in at 11 pounds, 6 ounces and is about 24 inches (two feet) in length. How ironic!

Are you ready for the unveiling of Kalista's Chinese name?

Here it is...

林

韻

玲

Lam Wen Ling
(Pronounced Lum-Wun-Ling)

Day After Surgery

Kalista is doing okay the day after surgery. There were many events that happened in the past 24 hours that is keeping her on the ventilator and intubated.

1. She had a mild to moderate fever last night and they are keeping an eye on her as far as arrhythmias and continued fever, since it may be due to the surgery and her heart.

2. Her blood gases have been roller coastering and can't wean her off the ventilator yet. She is getting morphine, tylenol, adivan and a whole bunch of other medications to keep the pain controlled and make her comfortable.

3. She has gotten very puffy since yesterday since she needed a transfusion during surgery and all the IV fluids she is getting are starting to accumulate. She is taking a diuretic to get rid of the fluid, but still trying to maintain enough hydration.

4. She lost her arterial line sometime earlier this morning from her right foot and her foot blanched white. It still looks mottled, but blood flow has returned.

5. Once the team got that under control, a hose from her ventilator detached causing her to desaturate and turn blue. Of course, they got her back to her normal pink color immediately.

So...as you can see...we've been a bit overwhelmed. We just got home from a long day at the hospital, work, continuing education lecture, baby prep/transitioning home lecture. At the moment, Kalista has settled in to her usual all night sleep pattern and is comfortable. We hope tonight she will do some magical healing as she sleeps and rests. We'll give you an update tomorrow.

Surgery Went Well

Kalista's face after we explained what was going to happen today

Kalista had surgery this morning. They were able to get her surgery bumped up earlier in the morning for the 9 am slot. Needless to say, we rushed out of the house like the Tazmanian Devil to get there to sign the consent forms.

The procedure took a little over three hours and the surgeon said he was very pleased because it was a very difficult surgery for him. Dr. Saenz was able to give her the low profile Mic-Key button G-tube, which is what we were hoping for. What made the surgery difficult was the geography of all her organs and the small space he had to work with. The base of her esophagus was slightly tilted and her stomach was a little tricky to manipulate. We were told her pericardium (heart) got accidentally nicked in the process with the first incision, but was caught and repaired. Thank goodness!!! In the end, Dr. Saenz got the job done!

Kalista is recovering now in the main NICU because she needed to be intubated again (due to the anesthesia). They will wean her off of the ventilator within the next 24 hours when she starts to wake up and get a little bit more active.

Our next goal is to heal up a little bit more and start feedings again. Lora, the dietitian, told us that they will start with pedialyte first and then move her onto milk from there. When she can tolerate her full feed amounts..then she will be discharged. If things go right, we are hoping for just another two more weeks in the NICU. Don't get us wrong, we love our nurses....but it's time for us to go.

We have pictures of the G-tube and her belly...but they are a little graphic.

Please visit our photo album "Mr. Bumpy-UNCENSORED" for the latest updates on the belly beast himself if you are not squeamish.

OR click on the link for faster access: Mr.Bumpy Speedy Link

It's Almost Time

Kalista is ready for tomorrow!!!

Evening everyone! We just tucked our superstar in bed and hope she gets a good night sleep before her big surgery day tomorrow. Her surgery is scheduled for 9:40 am. We met with Dr. Saenz earlier today and we got some of our questions answered and it looks like we are on the right track for the healing process.

Kalista being so good at our latest dressing change

The plan is to perform the fundoplication procedure and implant a G-tube. He does not know which G-tube he will place quite yet until he goes in to see where her stomach and other organs are located. The ultimate goal is to use the low-profile Mic-Key G-tube...which is smaller and discreet. If this doesn't work because of where her stomach is, then we may have to go with a traditional longer g-tube initially and then swap out that tube with the Mic-Key tube in a few weeks once Kalista forms a "mature track". A fundoplication is the procedure where they take part of the fundus of the stomach and stretch it around the back side of the esophagus to form a tighter "sphincter" between the esophagus and stomach. This in turn helps control food from reversing and giving baby heartburn.

We also have a conference with a geneticist tomorrow afternoon to talk about and get our answers about Kalista's future.

It looks like it is going to be a long day tomorrow.....we are off to bed now.

Tick Tock Tick Tock

So we sit and anticipate surgery day as it approaches this week. It looks like we will be meeting with Dr. Saenz, the pediatric surgeon, either tomorrow (Monday) or on Tuesday to discuss the surgery itself and then we will have another separate conference sometime later in the week with the neonatalogists and GI specialists to discuss Kalista's future and all the questions we have about living a normal healthy life.

We are really curious to see what the pediatric surgeon is thinking at this point in time and whether Kalista's belly will slowly resume a flat appearance as her organs sink back into her belly or if we need to have these "tissue expanders" placed to give her more skin and room for the organs. We will soon find out all the juicy news in the next few days.

I'm Three Months Old!

Kalista is officially THREE months old today!

She has grown into a very cute young lady and when she looks at you, she works her magic charm. She has all the nurses and neonatal nurse practitioners (NNPs) wrapped around her finger.

This is her "I'm an angel" face

This is her "don't mess with me or my monkey" face

We can't believe how fast she has grown in the past few months, especially her hair. (LOL-It's an inside joke since all the NNPs always comment on how fast her hair has grown since they made the executive decision to shave it all off a while ago).

Jen attended a fun scrapbooking session with other NICU moms the other day. When we got home to place Kalista's pictures into the book, we realized just how far we have come from the day she was born. It hasn't been a picnic the whole way through...but at the end of the day, we foresee a rainbow.

Kalista having a staring contest with her own reflection

Her surgeon, Dr. Saenz, dropped by this morning to see how our little patient was doing and he has given us the green light to proceed with the next step. He was very impressed at how fast the healing process was for Kalista. So the next step is her fundoplication and g-tube surgery. Kalista is set in the schedule for surgery next Wednesday, August 18th. We're not sure of all the details yet, but it looks like we will be having a family conference at the beginning of next week to go over any questions we have and to make sure everyone is on the same page. Our biggest questions are: whether or not she will able to have her own babies someday, will she have stomach muscles to support the center of her abdomen, how the whole g-tube thing works when it falls out by accident, what is the next step from here....and many more questions between now and then.

We are so very excited, not for the surgery, but for this life in the NICU to be a thing of the past and have Kalista finally at home.

Please send us good juju and prayers over the next week for a great surgery and speedy recovery.

Instead of Dumbo...It's Bumbo!

It's BUMBO time!

Dad delivering the BUMBO to the NICU

For those of you who don't know what a BUMBO is, it is a little foam seat that is molded to fit babies 3 months old and older. Well, really until they can't fit in it anymore. We were tossing it around and looked on the bottom to see where it was made. We were thinking, like everything else, it was probably "Made in China". To our surprise, the BUMBO is made in (drum roll).....South Africa. Let us practice our Afrikaans shall we..." Howzit?" "We're planning to have a jol (party) with this BUMBO."

Kalista's toes are so adorable when she sits in her Bumbo

Jen has not been feeling well for the past few days because of a cold and has been banned from the NICU. So...Matt flew solo to Kalista's OT session where the Bumbo seat was introduced to Kalista. The session went well and it was perfect dad and daughter bonding time. Kalista seemed to enjoy sitting in her new seat, especially since she was able to see and play with Mallory monkey, her mirror and her rings at the same time. Everything was within an arm's reach away. What more can a girl ask for?

Kalista also got this cute little pink finger toothbrush for us to work with her on her oral stim. Hopefully, it will also do wonders for her gums and tongue. Gum massage anyone?

As always, once her OT session was done...she fell asleep.

Adventures In Bottle Feeding-Part IV

Well....what can we say...bottle feeding has come to a screeching halt. Our OT and doctors have decided to stop the whole bottle feeding journey for now since they do not want Kalista to eventually hate the bottle and develop an aversion to anything in her mouth. She is getting all her meals directly from her NG tube, which is in some way convenient since she can have her meal over two hours and not suffer from her reflux. Hopefully, once her gastric tube (G-tube) gets placed, we can start the bottle again. Until then....we just wait.

Cougar Town

Hello all! It's Saturday already...where has the week gone?

We just received an awesome package from the Martinez family since they just got back from Hawaii.....so jealous!!! This is one of the things they brought back for us:

When we got married in Oahu, we had similar ones made for us at the Dole Plantation. Now Kalista has one of her own! Thank you so much Uncle, Auntie, Alex and Aly.

Off topic: We found a picture of the pink foam lollipop after all (from our last blog post). Here it is...

We must say, she doesn't mind the foam swab if we keep it in her cheeks, but hates it when we run it over her tongue. Her milk stain is toward the back of her tongue and she has a bit of a sensitive gag reflex, so it's not so fun when we hit the wrong spot. Tongue + Swab = Retching (Bad news!!!)

Kalista is doing well and her belly continues to heal...the area of raw pink skin is slightly bigger than the size of a nickel now. Wahoo! Kalista has been gaining adequate amounts of weight and her dietician, Lora, is happy that the new ratio of formula, milk and rice cereal are working so well. She is now 11 lbs, 3 oz. Such a big, healthy baby!!!

In the past few days, we have taken to the play mat again with Kali. She does very well sitting up with minimal head bobbing and enjoys playing with her mirror and all the toys attached to it. We share the play mat with her six month old neighbor.

Her neighbor had the cutest shirt on yesterday that had a car on it and under the car it said "Cruisin' for Kisses". The nurses made a joke and called Kali and her neighbor "Cougars" since they are the oldest girls in the NICU C Pod. Just this week, Kalista has been cleared to play and visit with her neighbor. Our medical care team wanted to make sure Kali's thrush was completely gone.

Kalista has figured out how to soothe herself with her tiny hands. It is adorable watching her suckle and lick them. She smiles quite a bit more, but brings out the serious face and "what?" face most of the time.

Today we had to change Kali's NG tube since the cap broke off the end of it and of course, we took full advantage of her clean face. IT'S PHOTO SESSION TIME!!!

We brought in a new toy this morning...Mallory the Monkey...for Kali to play with. The stuffed hula monkey and Kali have become good friends...they are so cute together. Mallory made it into the photo session too.

Fun On The Mat

We had a fun visit with OT today.  Casey, our occupational therapist, is working with Kalista on the play mat since she is getting to that age for quality floor time. They are working on sitting and neck control/strength, reaching out with her arms and rolling on her back from one side to the other (the precursor move to crawling).  Kalista had a great time, but tired out and fell asleep in the middle of her exercises.

 Kalista hanging out on the mat with her chain links and pillow

 Kalista playing with her rattle

 Kalista fell asleep in the middle of her exercises

The final results came back from the Infectious Disease folks and everything came back negative, which means that the thrush is gone.  Kalista's tongue is still white, but they are suspecting it may be a milk stain from her reflux.  We have started an oral hygiene regimen with these pink foam swabs.  They look like those Dum Dum lollipops and have a mint flavor to them. We hope this will help with the white coating on her tongue.

Hmm....thought we had a picture of Kali with the pink lolly.  Guess we don't....oh well.

The Bottom Line

Kalista's bottom is 100% better.  I'm sure diaper rash is a run-of-the-mill thing that happens to most babies at least once in their lives, but Kalista had it really bad.  Now it's all healed and that's what matters.

Kalista hanging out with daddy

We believe that her thrush must be getting better since she is starting to like her pacifier again, but in short spurts.  She has also taken a new interest in putting her hands in her mouth.  Those fingers must be pretty yummy!

 Kalista smiling at Uncle Bill after nibbling on her hands

The latest news with Mr. Bumpy is that he is getting smaller in size relative to how big Kalista is getting.  The raw open area is now about 2 cm in diameter.  It is so exciting that the area is shrinking in size so quickly.  Chuy, the orthopedic specialist, came to measure her again for her belly shell and had to shave down a lot since his last measurement a few weeks ago.  The belly shell will be for her car seat and other belly pressing items. 

What lies ahead?  After Mr. Bumpy is completely healed, we will be looking at another surgery.  This surgery, called a fundoplication, will help Kalista with her severe reflux and it looks like she will be getting G-tube for feeding.  The recovery time is usually a week or two, but it all depends on how she recovers...then she can come home. Yahoo!

We're sure Kalista will be ready to come home soon