Hospital Update

Karsie is improving. When we brought her in she was struggling to breath and her oxygen saturation was in the 80s. She has since been put on oxygen to improve her saturation and make it easier for her to breath. They have been weaning slowly to give her a little help as she improves. Right now she has been weaned to 25 percent and 3 liters of flow.

She has a pretty nice hacking cough that has been breaking up the junk in her lungs. Right now she is talking to the top of her bed probably complaining about the nurse that suctions her.

The RSV has turned into pneumonia and we just have to wait it out and hope her body continues to fight the illness. We have been taking shifts staying with Karsie this time. We absolutely love the care she has been given, but the only "bed" they have in her room is the most uncomfortable chair in the world, and since they request parents stay the whole day there is no sleep for the person staying, so it is necessary to stay in shifts. We're working on a make-shift bed in here though. Hopefully she will be out by the time Kevin has to go back to work.

Happy new year everyone. The hospital is not exactly where we would like to start off 2010 but there are worse places. Have a great day!

Back in the Hospital

So our insurance gambled with our daughter's health and lost. Immediately after we were discharged our San Diego pediatrician got on the phone trying to get the RSV vaccine for Karsie. RSV, which stands for Respiratory Syncytial Virus, is a type of flu that most kids get before they're two that affects the lungs. For most babies/kids it's no big deal, but for preemies and babies who have been ventilated and have had premature lungs (aka Karsie) it can be pretty dangerous. Our insurance company decided to decline the doctor's request for the vaccination because at the start of the season she was just barely over 3 months which is the standard cutoff...for babies that are teenie or have been ventilated. They didn't take into account Karsie's history. Guess who now has RSV?

Karsie had a pretty rough night last night. She did fairly well during the day but started to really have a harder time breathing and was really fussy during the night. We had an appointment as a followup from yesterday's appointment earlier this morning and she was not satting well. So they admitted her to the hospital. After they gave her some oxygen and stabilized her they took some secretion samples and it came back positive for RSV.

Needless to say we are really upset as this was something that could have been prevented or minimized. For now we are just praying that it doesn't get worse as RSV can be very bad for her if it does get worse. Even in the midst of this we have been encouraged by one of the nurses that knows of Karsie even though we've never met. Hopefully that's a good sign. We'll update you when we know more.

Five Generations of Women

From left to right:  Great Grandma Marie Koch, Great Great Grandma Norma Royal, Michelle, Karsie, Grandma Reva (Nana).  It took us 5 months to get this picture, but here it is.  

Croup

We took Karsie into the pediatrician's office today because her cough has continued.  She has the croup which is inflammation of the vocal chords.  So she has been given a bunch of medicine to help.  She is now going to get albuterol for her lungs to help breath during coughing fits, a steroid to help the inflammation go down, and an antibiotic to help with an ear infection that she doesn't have but is starting to develop.  Most of these medications last only about a week, so hopefully she will start to show signs of improvement fairly soon.   

Holiday Cough

Karsie has been fighting a moderately chunky cough for the past couple of days.  She's had an extremely mild and very infrequent cough since being discharged, but it has gotten chunkier and it has made her pretty uncomfortable lately.  Right now we think it's nothing serious as her body temperature has been normal, but we may have a doctor's visit in our near future if it doesn't go away.  Along with this has been extra gas in her belly because of the coughing and crying.  She woke up for the first time during the night a few nights ago and has continued since.  So even though it doesn't look to be too serious now it's keeping her uncomfortable throughout the day which keeps her crying, giving her extra gas in her stomach which in turn makes her even more uncomfortable.  So the cough needs to go away.  Good news is she's doing a good job of breaking it up even though she hates doing it and throws a fit all along the way.  

Our Christmas was great!  Karsie slept through most of the festivities, but she was pummeled with loot...and we're only half way done as the Royal clan comes up today and will no doubt have more to spoil her with.  Our most sentimental gift was a Kerby bear circa 1983.  Kevin was given a Kerby bear on his 3rd birthday by his grandparents and it was his favorite toy during his childhood.  They stopped making the bear in 1984, but ebay is a great place so Karsie was able to get her own bear.  Along with Kerby was a whole lot of clothes (some from Paris even...fancy little one already) and toys.  It was a very fun day along with a wonderful visit from Grandma Turner and Aunt Mandy.  

 

Feel better Bug... 

Merry Christmas!!

MERRY CHRISTMAS FROM THE TURNERS

Christmas Eve at Home

We have been blessed to get to decorate our house for Christmas this year!  What a treat to have Karsie's first Christmas at home!

 

Picking out a tree!

Bringing the tree into the house!

Kevin's Christmas Village

The start of our Christmas Card Tree... see yourself?

Our Stockings

Our ornament for 2009

Our tree all trimmed!

Merry Christmas Eve!

Phase 3

We've moved on to Phase 3 in Karsie's life.  

Phase 1 - Get Karsie to delivery 

Phase 2 - Deliver Karsie

Phase 3 - Fix Karsie's birth defect - While this phase is the longest of all the phases, it's a lot more normal than the other phases and, dare I say, less stressful.  Our job is to grow her and keep her healthy so the doctors can do their job.  We have a slew of appointments before any procedures are done, but here is the basic plan at this point.  We are well aware that plans at this point can change based on Karsie.

In April we will see the plastic surgeon.  She will look Karsie over and assess her growth and ability to handle surgery.  She may or may not schedule a surgery, but if she does we're pretty sure it won't be until Karsie's at least a year old.  The plan is to put in tissue expanders to stretch out Karsie's muscles and abdominal cavity.  This is a very basic surgery and isn't as stressful as the next, but it's still surgery.  She will have little water balloon-like pockets in her body that we will have to fill full of saline every now and then to expand her body.  

After her muscles and cavity have expanded to the point Dr. Saenz is comfortable, Karsie will go in for a closure surgery.  This, most likely, will close the case on the omphalocele and will be the final procedure for Karsie.  The hope is that the tissue expanders grow Karsie's body to the point she can fit her muscles around the organs.  That will push the organs into place and she'll be done.  The earliest we can even fathom this happening is around this time next year. However, it's probably more likely that it will be more in the 2-3 year range.  But we'll find out more as she grows.  

For now the blog will serve as a "Life with the Turners" with intermittent information on appointments and procedures thrown in here and there.  Karsie is real close to laughing, so we hope to capture that soon.  Those types of things will hopefully be the direction of our blog for a while.  Time to breath.....

BFF (Big Fat Fatty)!!!

Today was an interesting appointment.  We went in to the pediatrician's office and started to sign the paper work.  As we were filling things out we noticed that the first name of the doctor that we thought we were seeing and the first name of the doctor we were signing up with was different. Since our OBGYN recommended this doctor we were nervous that he got the doctors mixed up and we were seeing the wrong one.  

However, when we asked about the doctor we thought we were seeing the secretary said that this was his office (even though the name on the office door was different - with the same last name). Our OBGYN recommended this doctor because he went to med school at UCSD and is doing a ton of work at UCLA in pediatrics, so he has been exposed with weird things...such as an omphalocele.  He also graduated not too long ago, so we knew he was young enough that he might have run into some of our doctors during his studies.  However, when the doctor came in he had obviously been out of med school for a long, long time.  Much longer than the doctor we had researched and had been recommended.

We started to tell him Karsie's story and he started to write things down.  As we were doing this he seemed very cautious and real quiet.  He kept pausing to ponder things.  We liked him very much, but we were under the impression that he was in over his head with Karsie.  After about 10 minutes of conversation he said "I think that she is more of a case for my son." Ahhhhhhhhhhhh...... so everything worked out fine and we saw the doctor we were meaning to see, but it took us full circle to get there.  And we LOVE the doctor that is now Karsie's pediatrician.  

Now for the "ten" news:  Karsie was weighed with her clothes on, so it definitely tipped the scales in her favor, but we're positive that she has hit a milestone.  After 5 months of life she now weighs as much as her mommy did when she was born:  10 lbs!!!  Karsie weighed in at 10 lbs. 11 oz.  We know her clothes didn't weigh 11 oz. so she has hit our goal for today.  Yay fat!!!  

Days Go On

Karsie is still doing great!  She feels like a brick now and just looks bigger.  We found a knee dimple yesterday, which was very exciting.  She has been doing a lot of running around with us as we are trying to get our house back in order and ready to accept an infant.  We're almost done, but still have a bit to do.  

We also would like to thank all those who have (and are still) brought us meals.  It is greatly appreciated and is a big help to not have to think about it.  

Karsie has her pediatrician's appointment tomorrow morning here in Bakersfield.  We're interested to see if he knows any of the doctors from Children's Hospital as he went to med school at UCSD not too long ago.  We're hoping for fatness tomorrow too as they will no doubt weigh her.  10 lbs anyone?

Karsie's great grandma came over today and visited.  It was neat to have her come by as they wouldn't let her into the NICU when she came down after she was born.  It took 7 months for this moment.  We are also real excited when the Royals come down to get a five-generation picture as Karsie's great great grandma lives just around the corner from us.  We took a three generation of women picture in the NICU but we're excited for the five.  

P.S. As of 2:00 p.m. pacific time Karsie has officially been out of the NICU longer than last time.  And she's doing much better.

Catch Up

Our trip home has been great, but without Internet access, so you will get our information all in one clump.

We left San Diego on Thursday around 1:00, traveled up to Los Angeles to stay with Grandma Turner and Aunt Mandy for the night.  It was just in time for her 5 month birthday.  Today we left around 10:00 and arrived in Bakersfield at 1:00 and have been spending the day fixing our house. Lots and lots to do.  Karsie did great with the trip.  Our dogs are very curious by her and rode the whole way with her, much of the time looking at her.  

Here are a few pictures of our journey to tide you over.  We'll post more information later.  For now, lots of work to keep doing...

Finished!

It's official. Karsie's doctor appointments this year are done in San Diego. We're sad to be leaving them as pretty much every doctor has been amazing, but it's exciting to leave for home. Our plan is to leave Thursday night and arrive in Bakersfield on Friday.

Today Karsie saw the G.I. doctors. Everything looked great. There wasn't much done except a look at her lab work that was done a bit ago. Her liver functions are pretty much normal, especially for her. We will be returning in a month or so to talk with nutrition and G.I. together about her feeding. But she is looking great!

Her blister popped. We thought she wet herself with a blowout from her diaper, but it was the "juice" from her blister. So now we have a new thing to look at on her belly. Hopefully it's a quick heal. Tomorrow is "goodbye day" for the grandparents. Nana and Grandpa will be spending as much time smothering Karsie as they can before she leaves.

History of Karsie (12-14-09)

WARNING:  BIRTH FOOTAGE and medical pictures

Two Down, One to Go...

Today, Karsie had two of her three appointments before we leave for Bakersfield.  She had four lined up this week, but one of the appointments (nutrition) bailed on us and we set it up in January.  So far so good.  We had neurology early today.  The doctor she saw was the first neurologist that told us about Karsie's burst suppression after the initial EEG.  He looked her over, pulled out a toy and let Karsie track it (she passed with flying colors), and checked her reflexes.  As far as he's concerned, she's perfect.  He also pulled out a preemie growth chart for Karsie's head and she's pretty much smack dab in the middle, so she's growing fine.  Her weight now is 9 lbs. 14 oz. but they weighed her with her clothes on, so a couple ounces probably should be shed from that weight.  We go back in April.  

Surgery was next.  It was interesting seeing Dr. Saenz out of the hospital.  We were a little nervous about the surgical appointment as Karsie has grown a blister on Pinky.  It showed up a couple of days ago and has filled with fluid since.  However, he did not seem too concerned about it.  He said to treat it just like we're treating the rest of her granulation tissue, which is to put wet to dry dressing on it.  He said it will pop one of these days and it will set her back a bit with the skin growth on the omphalocele, but it's not a huge concern.  But the rest of her looks amazing!  She's so close to having total skin all around it.  

Last night Karsie went to her first party.  One of the Sunday School classes here at the San Diego church we attend holds an annual Christmas party.  They have all been so faithful praying for Karsie, so we made a cameo and had dinner while showing off our miracle.  She was wearing a homemade dress made by Nana.  Isn't it cute?  We had to leave early as we miscalculated Karsie's food, so we needed to fill it up.  Also, we're now part of the infant parent club so commitment to something for a couple of hours is always up in the air.  

Tomorrow ends our doctor visits in San Diego for the year.  We visit G.I. tomorrow and get to weigh her for real (they do the whole naked weight thing).  Think fat thoughts...    

Aunt & Uncle Time

It's been a long time coming, but we finally got the aunts and uncles time with Karsie.  Uncle Todd and Aunt Christine were able to visit Karsie the first time she came home.  Aunt Mandy was sick that weekend and she never was able to see her.  This weekend, Aunt Mandy finally was able to visit Karsie.  She spent a lot of time walking around with Karsie's "bag" of food (the black bag under Aunt Mandy's arm carries Karsie's food and pump connecting to the G-Tube). Hopefully this Christmas we will all be together and Karsie will get to see everyone at once. Next up...great grandparents!!!

Pediatric Appointment

Yesterday we went to the final pediatrician appointment in San Diego (at least that we know of). We are very sad to say goodbye to our doctor as she is wonderful, but excited to take her home and meet a new one.  Hopefully he will be as good.  

Everything with Karsie looks as good as can be expected.  She weighed in at 9 lbs. 7 oz.  She's finally getting to the weight of some big babies at birth.  She's still got another pound to go to get to her mommy's birth weight.  

We haven't mentioned Pinky in a while, but it's almost completely skin now.  There is a little area, maybe the size of a half dollar, that is still granulation tissue, but even that is starting to look like it's ready to turn into skin.  It also looks smaller compared to her body.  It's still a pretty good size, but it used to be really tall and the base is now bigger which means it's probably going into her abdomen.  We're working on a little video that goes through Karsie's first few months and we'll try to get in a few good pictures of Karsie's current skin on Pinky. 

One appointment down, four to go.  Next up:  Surgery and neurology.  

More Zoo Pics

It was a fun enough day yesterday to devote two blog entries to it.  Here are a few more pictures with explanations:

There is a baby in Michelle's arms, but by this point in the day Karsie was in her little Moby wrap.  Plus since it was cold, she was bundled by blankets.  But trust us, she's there.  
We had to get this picture (all of these actually) sent to us from Kelli and Dave, but here is the proof that there were actually animals where we went.  
Our favorite place to go at this point has been the viewing area by the orangutans.  We got Subway and brought it in to eat our lunch.  This is one of our favorite things to do, sometimes just for lunch.  And this time lunch featured not only the monkey entertainment, but a little girl to entertain as well.
Karsie is actually awake, but her hat wiggled its way down her face and covered her eyes.  One day she will enjoy the monkeys when she can actually see them.

Zippity "Zoo" Da What a Wonderful Day!

In front of the orangutans.  None are in this picture, but we just missed one earlier that was peering out looking at the people.  
There was a lady that stared for a very long time at Karsie's little setup here.  We fashioned a little venting device with the syringe.  It hangs from the car seat and the food goes into the top. The venting helps Karsie get out gas that builds up.  It's definitely not something you see everyday. 
In front of the duck pond.  We learned lots of facts on ducks here.  Maybe one day you'll hear us talking about them randomly.

In case yesterday's post was a bit cryptic, Karsie is out of the hospital and home with her family. Although judging by the comments it seems it was understood.  We had a hard time keeping it from everyone including the blog as Michelle really wanted to surprise her mom and dad.  Reva would say from time to time that she was hoping that Karsie would just be there one day.  We found out late last week that Karsie would most likely come home on the 9th.  So we really had to work to make things seem pretty ho hum during that time.  Even before that we could tell it was coming as Karsie was doing so well.  Needless to say, we feel better not having to tip toe around the subject.  The blog was especially hard since it's whole purpose is that very subject we were trying to tip toe around.  It was tough but totally worth it when Michelle's parents walked in and saw us holding her.    

That being said, Karsie is home and doing great.  She slept 8 hours last night.  While we would never wish the G-tube on any baby, especially our own, it does have its advantages.  One of those being we don't have to wake up in the middle of the night to feed her.  It does that on its own.  We've noticed a little decline in her leg strength.  Babies have the reflex to use leg resistance when parents stand them up and most babies just get stronger with that until they walk.  Since Karsie has been in the hospital for so long she hasn't had to use her leg strength, so it has gone down considerably.  Therefore, one of our tasks is to get her to push back when we push on her legs every so often.  We continue to work on her neck strength as she hasn't had a whole lot of practice sitting up or being held so she has to use it (that darn Pinky keeps getting in the way).  She is doing very well considering her lack of practice.  

We have a slew of appointments coming up starting with tomorrow's pediatric appointment with Dr. Gorton (we LOVE her and we're sad we have to leave her).  Just in one week we have at least one pediatric appointment, a surgical appointment, a neurology appointment, a G.I. appointment, and a nutrition appointment.  They slow down after a bit, but for now it's a bit hectic.  

Lastly, we were finally able to take Karsie to the zoo.  That was a desire of ours for a long time. It's very relaxing to us to see animals and it's a fun place to bring a baby.  We didn't spend much time there, but there was one very amusing thing that we must share with you.  We, the three of us and Karsie's Godparents, decided to go down the bear trail.  Most of the bears were in their little caves and homes because it was freezing cold, like 50 degrees (I say that with a hint of sarcasm as there are people that read this blog from other parts of the country rolling on the floor with laughter at the wimps - animals included - that reside in California).  We stopped to put Karsie in her Moby wrap, which she absolutely loves.  Karsie falls right to sleep when she is snuggled up in her Moby.  To do so, Michelle needed some assistance, so we were all helping put Karsie away.  Karsie began to get a bit fussy and started to cry and whimper.  As she was doing this, the bear that was in his cave (a sloth bear to be precise) came barreling out and stopped right at the edge of the moat that was keeping him from the fence that we peered over. He was definitely not aggressive but very concerned for Karsie.  He paced back and forth rapidly and even stood up on his hind legs a few times to peer at our little one.  It was absolutely hilarious.  We wish we had gotten a picture or video, but we were all helping, so our hands were tied.  So, if you are ever at the zoo with a baby and want to see an animal, have the baby cry on command and you might luck out.

Until next time...    

No Words Wednesday

BEFORE AND AFTER...

WELCOME HOME BUG!

Speedy Stats...

As of this afternoon:

Up to 28mL of 24cal/oz Elecare/Duocal formula.
Breastfeeding like a champ when she is allowed to!
Gaining steadily... up over 9lbs, gaining around 25 grams each night.
Gagging every once in a while... but responding well to being vented. Prayers that she continues to respond well to venting!
Skin is growing well and healing as well as her recent surgery incision and g-tube site.
PICC line is now gone :)
Happy girl!

One Year Ago...

It was about this time a year ago that we found out we were having Karsie.  We had been trying for a few months and got pretty discouraged.  We decided to relax about it all and took a pregnancy test just for the heck of it.  Things happen when you least expect it.  The news became one of the Christmas presents we gave to our families as we visited them during the holidays.  

Karsie continues to do very well.  The gagging has pretty much stopped altogether.  We're pretty sure that she just needs to be vented with all the gas that gets built up with slow motility.  Once she gets vented she is much happier.  The doctors really want to get her to 150 mL per Kilo which would put her at about 28 mL.  She is currently at 25.  This kind of sprung up on us, but we do know that they wanted her up to that since the beginning.  3 mL to go!!!

She is currently weighing in at 4.15 kilos.  That translates to 9 lbs and 2 oz.  Also good news: her PICC line comes out tomorrow assuming she tolerates the feeding today.  We are so excited to have our little girl home for Christmas.  

Gagging

Maybe I didn't knock on wood hard enough... or maybe it was fake wood... but the Karsie has had a little bit of gagging today. We are desperately praying that it goes away. We are not sure what set it off because nothing changed until later in the day today (after it started). We are trying to vent her tonight and hopefully she will let some air out of her tummy and the gagging will be done, but if not it would be a safe bet that she'll go back down on her feeds.
She is currently getting 22mL an hour and it is now 24cal/oz. The formula is being fortified with duocal so she doesn't get overloaded with calcium and vitamins from Elecare. She started that this evening, so we are not sure how she will handle it.
Karsie is also still growing. Tonight's weight would put her at just over 9lbs, but the weight might be a little high and will likely come down slightly over the next couple days (her bed scale is a little touchy and the weight tonight was a 115 gram jump).
We are feeling down about the gagging... and we are praying that it stops and was just a little air in the tummy. Please pray with us that Karsie will be able to digest her added calories and that the gagging is over. We are ready to have her home again...

Back to the C

Karsie is continuing to do well (insert the sound of me knocking on wood).

She is up to 21mL an hour of 22cal Elecare. Tomorrow she should go up to 22mL and then over the next few days her calories would be increased. We are not sure how many calories she will need per ounce, but there are a few different options for how to get there being tossed around. We will start with increasing the caloric value of the Elecare. If that doesn't work, there are a few different ways to add MCT oil or possibly flax seed oil. We are trying not to use rice cereal this time as it can slow down motility... and Karsie already has super slow motility (hence the g-tube/fundo).

Karsie is still growing. The last two days she has slowed down her growth a little, but still growing. Over the last 7 days she has grown better than any other time in her life! That is amazing :)

This afternoon Karsie was moved back to C-pod (the step-down unit). We are not in a private room, but we do have a good amount of space. We are hoping this means they plan on sending her home soon!

The nurse practitioners from the NICU and GI talked yesterday about some flavor options for Karsie in regards to her oral feeds (since she HATES Elecare). They decided to let her breast feed!!!!! She has a 5 minute time limit so she doesn't eat too much. Last night she didn't do well. She really just wanted to look around and see what was going on, and eating was taking away from that. Also, she has been taking her paci so much lately (which we like) that it can make the transition a little tricky. Tonight however she breastfed like a little champ! She ate for all 5 minutes and then I had to give her the paci back because she wanted to keep going. She gave me a great milk drunk face and fell right to sleep. That was a great moment! She might not get back to plain breast milk for a while, but what a treat to get to nurse her again!

Karsie is now up to 20mL an hour on her feeds... but the pump is only running for 22 hours a day! That means that in the evening she has a 2 hour break from food. The goal is to get to 20 hours a day (a 2 hour break in the morning and another in the evening). The other goal is to get up to a good volume (approx 130mL/kilo/day=520mL/day=26mL/hour) and then modify the calorie content so she will continue to grow. The process is very day-to-day... and based on provider preference. Therefore, we only know the general outline and not so much the day-to-day plan. Thankfully we are at peace with this plan and are feeling ok about taking time with it.
Karsie is still a fun little bug! She is active and awake lots now and she loves to play and have books read to her. It is so fun watching her develop! She smiles all the time!

Christmas Bug

"I love me some linkys!!"
"Look at me, I am so sweet in my Christmas outfit! Thanks Aunt Darla!"

It seems the backtracking has helped. Karsie is now up to 18mL an hour of 22cal Elecare. She is doing very well on it and not really gagging at all. She had another bottle attempt yesterday and didn't gag but didn't enjoy the Elecare (yuck). We are now asking about having her take breastmilk by bottle to make the experience more pleasurable.
She is growing a lot! She has grown well for the past week... and she is now more than 8 1/2 lbs. While I still want her back on breastmilk... I have to say that the Elecare is working well to keep her growing!
Karsie's skin is continuing to heal, but it seems her body might be prioritizing general growth above skin growth. The granulation tissue growth has slowed down a bit. Her g-tube site and fundo incision both are healing nicely.
We are pretty ok with the plan being a little slower... in hopes that if we take our time, there won't have to be much backstepping again. We are ready to have Karsie home with us yesterday... but we want her to be healthy too. And for now... as much as we don't enjoy the hospital... we are enjoying every minute with our little bug! She is amazing :)