Thursday, December 31, 2009

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!

Tuesday, December 29, 2009

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.

Monday, December 28, 2009

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.   

Sunday, December 27, 2009

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... 

Friday, December 25, 2009

Merry Christmas!!

MERRY CHRISTMAS FROM THE TURNERS

Thursday, December 24, 2009

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!

Tuesday, December 22, 2009

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.....

Monday, December 21, 2009

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!!!  

Sunday, December 20, 2009

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.

Friday, December 18, 2009

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...



Tuesday, December 15, 2009

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.

Monday, December 14, 2009

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...    

Saturday, December 12, 2009

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.  

Friday, December 11, 2009

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.

Thursday, December 10, 2009

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...    

Wednesday, December 9, 2009

No Words Wednesday

BEFORE AND AFTER...

WELCOME HOME BUG!

Tuesday, December 8, 2009

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!

Monday, December 7, 2009

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.  

Saturday, December 5, 2009

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...

Thursday, December 3, 2009

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!

Wednesday, December 2, 2009

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!

Tuesday, December 1, 2009

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 :)

Sunday, November 29, 2009

The Climb Begins Again

After 36ish hours of staying at 15mL/hour, Karsie has begun to climb back up towards a goal of at least 21mL/hour. She is going to go up once or twice a day depending on how she is doing each day. If it seems like she is getting more gaggy she will stay longer at each volume. If however she is handling well, she will be increased. The trick now is to find her tolerance level and then not go over. Then, once we have a good volume for her, we will see about increasing calories.
Karsie is still doing well in all the other areas! Her skin is still healing well... the granulation tissue is about 2in across now! Her incision from the fundo/g-tube is healing nicely and the g-tube stoma (hole) is healing well also.
Karsie is a lot of fun these days. She is so happy and interactive most of the time. She LOVES to play with her toys and look at books or pictures. All the nurses are saying how comfortable she looks and how fun she is to watch. We feel the same.

Friday, November 27, 2009

Happy Karsie But The Soap Opera Continues...


Thanksgiving was great!  We were able to have the whole family together (minus one of course) and we got to go see a happy Karsie during the day.  

Today was back to the roller coaster that is our life now.  Karsie has been gagging quite a bit lately and really starting to retch.  If this had been before she had the fundoplication she would have been throwing up quite a lot.  It really started to pick up today as she was doing it many times during the hour.  So we got a call from the hospital today while we were out shopping (if you avoided shopping today you lucked out).  They said that they have backed her down to 15 mL an hour (she was at 25) and are going to go up slower to see if they get to a point where she starts it again.  The thought is that she is just hitting a wall and is unable to handle the volume. If that is the case they will increase her calories to make up for the lost volume so she can grow and get hydrated.  She's still growing and pooping so that has been a plus, but we've taken a step back.  We're pretty beat up about this because this seems to be the story every time.  We get real close and then we have to go back and start all over.  The good news is that they still seem to be talking about how they can get her home even with all of this stuff happening.  But for now our stay has been extended a little bit longer.

When we eventually went in today Karsie was alert and happy the whole time.  Since being backed off she hasn't gagged nearly as much, so we're hopeful this is something fixable soon. As of yesterday she was about 8 lbs. 7 oz so she is still growing.  Slowly but steadily.  We want her home for Christmas, so if any of you want to get us something great for Christmas call up Children's and tell them what to do to fix Karsie to get her home.  Blessings...  

Thankful... Part 2

Because who doesn't like a little more thankfulness (especially if it comes with some pics)!!

Over the last year... 
We started here:
Then we became three:
Now we are here:
What AMAZING things we have to be thankful for!


Thursday, November 26, 2009

Happy Thanksgiving!

"Ooh, shiny...I'll take those!"

Technically it's Thanksgiving now, but we still get to go to sleep for a bit before the feast. Speaking of feasts, Karsie gets to feed by mouth tomorrow for the first time in a few weeks. We are excited to see her get some food. However, we're not on breast milk (yet); we're on Elecare, so she will probably hate the taste, but hopefully not eating for weeks can persuade the pickiest of eaters.

She is currently getting 19 mL of formula every hour which translates to 58 mL every 3 hours (she was at 70mL when we took her back to the hospital). She is continuing to increase 1 mL of volume every 6 hours. Unless you're an amazing mathematician (hi Todd) we'll just tell you that it means she will be at her admission volume tomorrow night and at her approximate target volume (78 mLish) Friday (they increased her target volume because of her weight gain and age). She has been tolerating her feedings well so far. She did gag pretty hard tonight only a couple of times, but they said she could do that due to the fundoplication (and she has lots of saliva too). However, she's pooping like a champ so things are moving through.

We think if everything goes perfectly that we could be out as soon as early this next week. That's our hope at least. She is weighing about 8 lbs. 5 oz. That changes day to day, but we think we've hit her actual weight (she was much heavier after surgery as she retained fluids).

Finally, Karsie has been very content and downright happy lately. She just sits and stares for long periods of time trying to get everything in. In fact, we can tell that she is about to just crash but tries to stay awake because she wants to look around. She has started to talk a bit (cooing) and smiles very easily. She still has a pretty weak neck as she has been on her back for weeks and weeks, so we've decided to try and get her to practice holding her head up when we get a chance. She was doing fairly well tonight, but we can't do any of the natural things to help her with that like tummy time or holding her over our shoulder (as babies practice holding their heads up then). So we are trying to encourage the skill.

In the spirit of Thanksgiving... we wanted to acknowledge some things we are thankful for!

First of all we are thankful for our new family of three! We are so happy to have our incredible little Karsie Gene. She is such a fighter and she continues to amaze us. We are so glad to be on this journey together. We are able to pull strength from each other daily and neither of us could do it without the other.
We are thankful for supportive families. We are so grateful for the love and support they have offered. We are thankful for a place to stay in San Diego to be close to Karsie. We have enjoyed being able to spend time with our families.
We are thankful for incredible friends. We have friends all over offering to help us in any way they can. We haven't had to worry about things like a bum refrigerator or mail or the sprinklers. Having friends to come along and help lift some of the load has made a huge difference.
And we are thankful for prayers. We are overwhelmed (all the time) by the comments, emails, letters, calls we get from people letting us know they are praying for the three of us. We know that is just the tip of the iceberg. We will never be able to count all the prayers that have been sent up on our behalf... and for that we are incredible thankful.
We are blessed!
Wishing you a VERY Happy Thanksgiving!
Kevin, Michelle and Karsie

Monday, November 23, 2009

Happy Girl!



Sorry for the lapse in blogging... I have been a blog-slacker for the past few days.

Karsie is a trooper! She is up to 11mL an hour of feeds (Elecare 22cal) and will increase to 12mL at 1am. She is handling her feeds very well and moving it through! She did go about 48 hours without pooping, but then this evening she had a nice big poop! Someday Karsie will give us a hard time for broadcasting her bowel movements... but we are happy for the poops! She is also urinating a lot and getting rid of all her excess fluids from surgery.
Today she got her 4 month immunizations. She was given Tylenol in advance and was also given emla cream (numbing cream) so she didn't feel the 4 injections. She took it like a champ and didn't cry! She was a little more fussy this evening and you could tell she was sore.
She has been really alert and happy lately though! This is so fun! She likes to play with her linky toys ("Thank You Aunty Carolynn") and watch everything that is going on around her. We have to cover her eyes to get her to take a nap because there is so much to watch (she is on the monitor... don't cover a sleeping baby's face at home). She smiles all the time and really is just a fun happy girl!

Friday, November 20, 2009

A Very Special Thank You Part II

The three of us want to put out a special thank you to two incredible prayer warriors who have prayed every day since we can remember for our little girl. We know there are many more little ones that pray for Karsie and we thank all of you.

Thank you Garrett and Payton for your continued faithfulness to our family. You are helping Karsie every day with your prayers.

4.07 ??????

This afternoon we walked into the NICU to see Karsie's weight posted on her growth chart.  It read 4.07 kg which is basically 9 lbs.  This was an enormous increase from the day before and we were sure that it was a mistake, but it was exciting to think that she beefed up that much.  Sure enough we came back today and it was 3.775 kg which is 8 lbs. 5 oz roughly.  Even that might be slightly inflated as she has the G-tube now part of her weight and she has a few extra wires and such, but we're pretty sure that she is at least 8 lbs. now officially.  

Karsie has been increased to 2 mL per hour.  We thought that the order was going to be to increase by 1 mL per hour every 6 hours or so, but that didn't happen.  However, she has been changed to Elecare which is a formula, so that was a change.  They will go very slow at first and the hope is that if she tolerates it they will increase her feeding much more quickly.  

Thanksgiving is a good day not just for us eating but for Karsie as well.  They are giving her throat and esophagus a rest for a while as it has been hit hard by acid, surgery, and her being intubated.  However, we have decided that Karsie will get a Thanksgiving treat by getting to eat by mouth.  By then she should have ample time to heal her throat and from her surgery, so we want to try to give her a pleasurable experience with eating. 

Bit of News... and a couple pics!

Today Karsie was started back on feeds! Yay! She started VERY slow at 1mL an hour continuous. She has been tolerating it well; and if she continues to tolerate it, then she will be increased tomorrow (by an unknown amount). She is on pedialyte today and sometime within the next 24-48 hours she will be moved to Elecare. She will need to get up to full feeds of Elecare and tolerate that before we transition back to breast milk (but that is still the goal).
As promised, here are a couple pictures of our baby's tape-free, tube-free, beautiful face!!




Wednesday, November 18, 2009

Post-Op Day 3

Not much new today. Karsie is post-op day 3 and resting lots. She is still on Tylenol and Ativan for pain and to help her relax. She is breathing on room air and doing very well. She is a little "junky" sounding in her breathing, but nothing to be worried about... just a reaction to being intubated. She is still having a little bit of drainage through her g-tube which is also normal.
This afternoon she got rid of the NG tube that was being used to suction her esophagus. So, she is now tube/tape free on her face! Pictures will follow!

The other GREAT news in her post-op status is POOP! She has had two little poop smears today as well as a decent sized poop! Yay for working bowels! That is really great news. It means that her insides aren't too angry after surgery. It also means that if all continues to go well, she will get to eat tomorrow. We are not sure of the exact plan for feeds, but we do know she will start with pedialyte and things will go slow.

Tuesday, November 17, 2009

4 Months!


Well, not quite 3 months gestational age, but 4 months from her birthday. It doesn't seem like that long and at the same time it seems like forever.

Karsie has been doing very well today. She was extubated at about 2:00 p.m. and has done fairly well ever since. She has a nasal cannula for now until she can keep up her saturation level for a consistent amount of time, which we hope will be early tomorrow.



She was quite upset tonight when we went in, but not too terribly bad. This could just be that she was fussy or that she was too tired to really scream it out, but she went to sleep after a while and looked pretty comfortable. We hope that they manage her pain better than last time after she had surgery, but we're not counting on it. Part of the problem is that it's hard to tell if she's having pain or if she's just fussy, so that's not the doctors' fault, but when it's obvious she's uncomfortable we're expecting something to be done. So far it hasn't gotten to that level. She is on Tylenol only now and she seems to settle down after she gets it.

This is her G-Tube. It's a little blurry but you can see it comes right out of her skin. Her stomach is on the left side of her omphalocele so it sticks right out of there and it's only about a centimeter deep. That little tube that's dark (which is old blood from the surgery) comes out and you can plug the tube like a beach ball. Dr. Saenz said it's very fragile right now, so we're not sure what that means and when we can hold her, but for now we're staying away from that. We have had to put little mittens (or socks in this picture) over Karsie's hands so she cannot grab onto the tube.

We may start feeding tomorrow with pedialyte or we may just be waiting another day to give her body a chance to recover. We suspect the latter, but who knows. We're just praying for a quick recovery and that it works for her growing.


Monday, November 16, 2009

Continuing...


Not really much news other than what we posted earlier.  Dr. Saenz was able to do everything he planned to do without any trouble even with everything in her belly "cattywompus" (that was his quote).  He's planning on going real slow on the feeds, but he will be working with the NICU on how slow.  

We were able to see her briefly before we get kicked out at 6:30 and she looks good.  She has elevated blood pressure and heart rate and a couple other things that happen normally after surgery, but it's something to keep an eye on.  As soon as she wakes up the plan is to extubate her as long as she breaths fine.  

Post-Op

She's out!!!  Our nurse just came in and told us that the surgery went well and she's out.  We're not sure what happened and if they were even able to do both procedures, but the nurse wasn't told otherwise, so it looks like they did.

What we do know:  Her blood pressure stayed steady the whole time.  They started an IV in her foot to give her blood if she needed it (it was Michelle's donated blood) but we don't think she did need it.  She is still ventilated but it's a pretty low setting and she should be able to have that out when she wakes up.

We have a tough little cookie on our hands.  But we're not sure we're tough enough to do this too many more times.  We're both ready to throw up now.     


(Taken before the surgery)

Karsie's In

It took about an hour longer than was scheduled, but Karsie was just taken into surgery.  Dr. Saenz said it typically takes between 55 min. and 2 hours, so he said we'll say about 2 1/2 hours to play it safe.  We would not be at all surprised if it took that long or longer as Karsie's anatomy is not normal.  

Saenz went over the procedure again and it sounds tricky, but possible.  He did say that he would back out of the fundoplication (the procedure that will make it hard to throw up) if he could not do it safely.  He will have to fiddle with the liver a bit to get to the area he needs to do the fundo but each fiddle messes with the blood flow from the liver to the heart, so the less the fiddling the better.  

And the countdown begins...it was much harder letting her go this time around.  

Sunday, November 15, 2009

Playing Before Surgery

Hopefully it's a good sign that she is having a day like this before she goes in for surgery. We thought that since it's been a while since we've posted a picture or movie we'd get one in before surgery. We are obviously terrified but hopeful and it's good to see our little girl happy and playing before tomorrow.

Quick tidbit before tomorrow: She has hit 8 lbs as of yesterday. She will hover around that for a few days probably, but the TPN and lipids seem to be giving her a little extra help.

This will be our last post until surgery time (unless something worthwhile happens tonight). We will try and update all of you as things happen like her other surgeries. Like a family friend told us today, we'll be praying like crazy around 1:00 but by dinner time we hope to be giving high fives and rejoicing.

24 Hours of Prayer

"Dear Lord, please be with our little girl tomorrow as she goes in for surgery. We are so blessed to have her and have the opportunity to love her, and we thank you. Be with her surgeon and give him the wisdom to use his amazing gifts and talents you gave him to help Karsie. Be with all the staff that helps out and let them know that they are assisting your miracle on the table. Give Karsie your comfort and strength as she goes through this again. Please give her back to us. Keep her safe and healthy so we can continue to show your love to her. Amen."

Friday, November 13, 2009

Questions Forum

Surgery is scheduled for Monday at 1:00 p.m.  

We had a few people question some things about the surgery on other posts, so we thought we would put this up to answer questions.  Like other forums we will continue looking back at this for a week and answer questions as they come until then.  

We will start by answering questions on the comments section asked by some of you on other posts.

Thursday, November 12, 2009

Poor Little Bug

Surgery is in Karsie's future. We had a bedside conference and with our surgeon, a neonatologist, a nurse practitioner, a nurse, and a social worker. Here is the basic outline of our conference:

Problems: Reflux... The doctors have decided that the problems with the emesis has to do with her reflux. When they took the barium pictures they saw an unusually large amount of reflux, which was more than they originally thought. The NICU often sees reflux get worse the older the child gets, so Karsie is losing lots of nutrition and could be losing more if nothing is done. Thickened bowel... This could be something as simple as her bowels are recovering from a virus, could be that she is just gassy, or could be something else that we don't know yet.

Solution: What was proposed to us was a procedure called fundoplication and a G-Tube. The surgery is where Dr. Saenz goes in and wraps Karsie's esophagus around the tear-shaped portion of the stomach creating a sphincter that basically makes it next to impossible for Karsie to throw up. They would then insert a G-Tube into her stomach which has an outlet sticking out for us to feed which bypasses the esophagus and goes directly into her stomach. If she had to throw up for other reasons other than reflux it would be released into the G-Tube somehow (we're not all sure how this all works yet). This would allow us to feed her continuously (instead of 70 mL every three hours we would feed her around 23 mL every hour). She used to throw up more when we did this, but we think this is due to the reflux as she was getting food continuously.

We feel like this could be a solution, but we're not thrilled about another surgery to stress through especially when the surgeon admits that this is a tricky surgery based on her anatomy. However, we are confident in our surgeon. We do not have a time yet because Dr. Saenz is looking at his schedule and will let us know when there is an opening.

Wednesday, November 11, 2009

Technical Difficulties

Our internet has pooped, so our report is late and by phone. Disregard the typos.

Karsie spent the day digesting barium, which is what we all want to do on a Wednesday when we want to relax: try to break down the atoms of a metal. The only real news that we got was what was overheard and it wasn't really news. However, our surgeon has scheduled a family conference tomorrow at 3:00 to talk with us. That could be good or really bad.

We have a feeling we are going to be given options of a few surgical procedures we can do to help Karsie's digestive issues. But we honestly have no idea.

The good thing about the barium study was that it gave a series of pictures that the doctors can use to see how Karsie's process goes. Hopefully that gives them anotomical information to figure out what's going on. The last picture was taken at 700 p.m. so we have no information as to what was learned.

We'll know more after out meeting tomorrow...

Tuesday, November 10, 2009

Sleep Time

Karsie got a PICC line in.  Dr. Suttner called us tonight and asked if she could try to put in a line in a deeper vein.  The vein she had to use was in her jugular, which is on the side of her neck.  In order to do this Karsie had to be sedated, which also meant she had to be intubated during the procedure.  It only took about 30 minutes and they got it in.  When we left Karsie still hadn't woken up, but she was breathing over the machine, so as soon as she wakes up tonight she will be extubated.  She had a long night so hopefully she is getting some needed sleep.  

On to day 2 filled with barium and GI studies.  We will probably be getting a call in the morning, since Dr. Saenz seems to like to work in the morning, about the study or the results.  From there we don't know where we go.  

Results Part I

Dr. Saenz just called.  The good news is that it still doesn't appear to be an obstruction, so surgery for that is probably not in the picture.  However, it did show lots of air/gas all the way through and the lining is thickened. So something is keeping it in there, but we're not sure why and they're trying to find out.  

The long term prognosis is unclear but tomorrow the studies continue.  Karsie will have an upper GI and the goal is to see what the anatomy is like.  Saenz thinks the problem is mechanical, so this may lead to some kind of tube going directly into the stomach.  It may be a lot of things, but until it gets fixed none of those things are good.  

Post CT Scan

Karsie is out of the scan.  We are out of the NICU now as they are doing a sterile procedure on her (PICC line).  Hopefully they can find a good vein and get it in.  

Good news:  They didn't have to intubate her.  That saves her poor little throat from having to deal with more issues other than the acid that has been hurting it by throwing up for so long.  

We should be getting a call at some point in the next couple hours to tell us that we can come back (in other words they either got the PICC line in or another line) and information on the CT scan.

CT Scan Underway

Karsie is getting her first test done now. The goal is to not have to intubate her, but they are giving her just enough medicine to put her asleep, so if she doesn't handle it they will have to intubate. The pictures will be ready within minutes, but when they get read is anyone's guess.

The next test may come later if the CT is inconclusive. That would be an upper GI where they put barium in her bowels and watch the flow.

Finally, they are going to put a central line in after the CT scan. If they can get a PICC line in they will do that, but if not they will call the PICU and have them do one.

More updates later...

Update

Just a quick update...
Last night around midnight Karsie had a tube (larger than her feeding tube) placed from her nose into her stomach to try to deflate the bowel and empty the stomach. That tube produced some pretty icky stuff. It was a yellow/brown fluid that looked like poop... possibly backing up into her stomach as a result of a blockage. Since the initial stuff came out, nothing else has come out of the tube.  Not good news.
 
Another concern last night was that her blood cell count was lower than normal.  Because it looks like she will be going through tests and many more pokes, she received a unit of blood which helped bring her red blood cell count up. She is also getting IV antibiotics. Last night her CRP (test that shows infection) was about 12 which is high and this morning it was down to about 8. This means she is reacting well to the antibiotics. Her white blood cell count came up (another sign of possible infection).

This afternoon she will be getting a CT scan to try to get some pictures of her abdomen.  This seems to be our best shot at determining whether she has an obstruction or not. Unfortunately, she will have to be sedated for this. She might also have to be intubated (put back on the ventilator). The intubation would only last as long as she is sedated. While sedated, she will also have a PICC line placed so it will hopefully be still enough for them to put in the line without blowing a vein. If the CT results are inconclusive, then she will have the GI study (a barium swallow and a barium enema) that tracks fluid through a series of x-rays to see if they can see any kind of blockage.  

Again we're torn on how to feel.  On one hand we hope that they find nothing and she is not obstructed.  However, that means there is something else wrong and this guessing is not fun. On the other hand if they find that it's a blockage, it's at least an answer to why this is happening, but it's a scary answer.  There's no real way to hope here other than wait and see and then hope for the best outcome from whatever is determined.  

You are loved Karsie.  Show us your fighting spirit yet again... 

Tests

It has been an incredibly stressful couple of days for us.  Karsie seemed to be doing fine on the formula mix.  Then she started to throw up.  Today she threw up literally every feeding.  All of it. She's not keeping anything down.  She lost a ton of weight and her white blood cell count skyrocketed which could be infection or just a sign of swelling.  So, again the scare of a bowel obstruction is in the picture.  

Tomorrow (today by the time anyone reads this) Karsie will undergo a series of tests.  We're not sure what tests they will run but they will be to determine if she has an obstruction.  The real kicker was when she threw up the final time before they cut her feeds entirely and it smelled awful.  Kevin thought it smelled like sulfur while Michelle and the nurses thought it smelled like poop.  That's a bad sign.  

She's being put on antibiotics again and probably going to get a blood transfusion.  She had an IV put into her head and probably going to get a PICC line (or try to put one in) put in sometime tonight or tomorrow.  This seems to be a much longer stay in the NICU than we anticipated.  We know it sounds redundant, but we are so emotionally beat up right now we're not sure how or what to feel.  It always seems to be something.  

Saturday, November 7, 2009

Crying Over My Spilled Milk

The newest development in Karsie's care came about yesterday when the GI doctors came to visit. They had seen her once while she was out of the hospital and will continue to follow her. They decided to put her back on the erythromycin to help improve her bowel motility. They also talked about the possibility that Karsie might be having allergies to something in my breast milk. Babies aren't allergic to breast milk, but can have allergies to things the mother eats and passes into the breast milk. Since I have been pumping since July, and we use the oldest breast milk first, Karsie has been drinking milk from August/September. There is no way of knowing what is in the milk that might be causing her to spit up. If she was home and breast feeding, we would be able to play with the foods I eat and try to rule some things out. However, even if we were to take in fresh milk, the delay in feeding at the hospital as well as the charting burden this would create, we would be hard pressed to be able to play with the breast milk in the same way. Therefore, Karsie will be placed on Elecare formula (hypo-allergenic, lactose free). She tolerated this formula when it was added to the breast milk, so it was the logical place to start. If she tolerates this without spitting up, then we can assume that she is allergic to something in my milk. If she continues to spit up, there are several other formula varieties to try. If she continues to spit up on all the different varieties, then we can assume that she is just a spitty baby and possibly return her to breast milk. Another option to be played with at some point is if Karsie needs higher calories in less volume. This can be done with either formula or a breast milk/formula combo.

All of this is a bit controversial. I have worked VERY hard to keep my milk supply up in hopes that someday Karsie might exclusively breastfeed. I also feel VERY strong about the benefits of breast milk, especially to a "gut" baby. However, I realize that the reality of Karsie's situation is there might be something that is better for her at this time. Don't get me wrong... I know that formula babies are just as happy and healthy as breastfed babies... and that in the long run, everything will work out... but this is the one thing I had complete control over. I read books about nursing and pumping and I was prepared for this. When Karsie was so sick and we couldn't do anything for her... I could pump and save my milk to heal her when she could take it. I have been blessed by a good supply of milk. I haven't had problems with pumping or storing my milk. Albeit, I hate pumping, but I have control over that.

I will continue to pump to keep up my supply in hopes that someday Karsie will be able to nurse again... I might spend some time staring into the giant freezer full of milk and crying... I might be "that" mother, the one that nurses her kid until she is old enough to ask for it, because I felt like I missed out on nursing in the beginning... I might end up having a giant freezer full of hard work to donate to someone else's sick baby... I might retire my rental pump sooner rather than later...

In the mean time... I am going to enjoy holding my baby and feeding her bottles of stinky formula.

Quick Update

Karsie's PICC failed again last night.  Her veins just keep blowing.  We hope that with the volumes she is on today and later that the PICC will not be as necessary, but it was the hope that the nutrition would help her make up for lost weight/nutrition.  We're pretty certain that when her peripheral IV goes then we're done with the IV's which actually could be a bad thing as she may need fluids and has no veins left (easy ones) to accept it. Let's hope she does not need any for a long time.

We should have another update later today when we come back from the hospital. 

Congratulations to our friends Ryan and Kerri for getting married today.  We are so sorry we are stuck here and cannot make it. We'll dress Karsie up fancy for you guys today.   

Friday, November 6, 2009

Poked

If there was a word to sum up Karsie's day today... it would be "poked."

Let me rewind and start from yesterday afternoon.
When we left in the afternoon, Karsie needed to get another IV (this makes #6 since being readmitted). We came back in the evening and she had the IV and was getting a really low dose of TPN and lipids. We felt pretty good about the extra fluids and calories. Karsie ate like a champ yesterday and last night and today. She has handled her feeds fairly well with her usual occasional sit-ups. Today the doctor called and wanted to put in a PICC line (an IV that goes into a central vein). This way Karsie wouldn't have to have a new IV every other day. A PICC line is also ideal for TPN because the TPN itself can cause tissue damage if it leaks out of the IV, therefore a central line is better. Getting a PICC is a sterile procedure, so we stayed until the ladies found some good veins to try for the PICC and then we said goodbye. A little later, we got a call saying that after 4 tries, the ladies couldn't place a PICC and were not going to try any more. We got in to see Karsie this evening and she has a new little bald spot on her head and 4 different bruises from the attempts... and no PICC. While we were visiting, the nurse was concerned about the IV that she had in her arm, and so the nurse practitioner was going to try for another PICC line in her leg. We are hopeful that this one will work as Karsie is running out of good veins for IV's and we don't want her to be poked anymore than really necessary.
Tonight at midnight, her volume goes up to 60mL every three hours and we are hoping she will continue to handle her feeds with minimal spit-ups.

The TPN has given Karsie a little boost in energy and the nurses would agree that her personality is back to her normal NICU-self (still different than her home-self).

Thursday, November 5, 2009

We Have a Plan

Kudos go to Tammy, our nurse practitioner today.  We understand that everyone tries to keep us involved with planning, but Tammy really sat down and took a good chunk of time to hash out a plan for Karsie and for that we are incredibly appreciative.  The key now is that this plan is either kept or we are involved in changes as they need to be made.

Problems:  Karsie is now not handling her full feedings as she has been off of it for so long.  Dr. Saenz continues to be doubtful that it is an obstruction, so now our goal is to work on feeding and growing.  However, Karsie is not doing as well as she was doing at home.  She is tired and defeated.  Also, she is not gaining weight and is, in fact, losing quite a bit of weight.  This problem is a downward spiral.  She needs to eat to gain weight, but she can't eat because she can't tolerate her feeds, which makes her tired and then causes her to lose weight.  

Solutions:  Our plan is to start her taking 50 mL of breast milk every 3 hours.  She did not eat enough when she was able to take it on her own, so we are going to have to use her feeding tube, which hopefully will increase her weight/stamina and cause her to eat more orally which will get her to eventually take the tube out.  We have a little leeway to play with during her 3 hours.  If she is hungry the nurses (or we) will feed her orally until she is done as long as she gets at least 50 within the 3 hour time limit.  We also are slowing down the rate that she is fed by tube since she tends to throw up on the tube.  The plan is to give her a chance to feed orally every feed.  What she doesn't take will be given to her by the tube.  If she takes over half they will give her a small break and tube feed the rest over the hour's time.  If she takes less than half they will immediately put her on tube feeding over the hour.  This way she is not overworked during that time and her body has time to digest without getting pummeled with food.  This hopefully will get her to a point where she tolerates bigger volumes.  Finally, the plan is to increase her volume by 5 mL every 24 hours.  With no hiccups this will take approximately 4 days to get to full feedings again.  We then will start to think about adding in the extra fortifiers as she needs extra calories to continue growing that skin of hers on her belly.  We could be in for a while longer, but this definitely beats surgery.  

The final part of the plan that we really like is that it is written in the orders to contact us before any huge changes are made.  We're not sure how this will be delivered and followed through on, but we feel our opinion is at least being taken seriously for the time being.  That's all we ask.  Thank you Tammy...

Tuesday, November 3, 2009

Update


When we left the NICU yesterday, we were fairly convinced Karsie had/has a bowel obstruction. This morning, we spoke with the Nurse Practitioner and she said Dr. Saenz still doesn't think it's a bowel obstruction as she is pooping still and other signs are not pointing to it.  However, they are still not ruling it out.  After a lot of discussion today among the doctors and nurses (none of which included us) we have yet a new "plan" that we actually like but we are a little nervous as to how it will be run.

Today Karsie has been put on an "ad lib" plan for feeding. She is allowed to take as much as she likes every 2-3 hours as long as she meets a minimum for her weight.  The nurses and doctors are convinced (and so are we) that Karsie self-regulates her need for food.  In other words, when she stops wanting food, she lets us know and forcing her to eat much more than that could make her throw up.  The hope is that she will self regulate and get to a volume that allows her to grow but doesn't overfill her little belly. So they put her on a system where Karsie calls the shots.  When she is hungry, within 2-3 hours of her last feed, they will feed her until she doesn't want food anymore.  It's very similar to what normal babies do, just keeping very close tabs on it.  This doesn't yet solve any problems if it's an obstruction, so we believe they are treating it as if it is not and calling the emesis (throwing up) Karsie not being able to handle full feeds the way we were giving it to her.  Thus the switch in plans.  So far today, she has done very well with this new plan. Her feeding has gone as follows:
12pm- 38mL
2pm- 32mL
4pm- 31mL
6pm- 55mL
8:30pm- 37mL

She has to get to 180mL every 12 hours. She has met the goal for the first 12 hours already (she is one feeding away from her first 12 hours and already hit the quota).  They give her this "minimum" quota to meet as anything less would dehydrate her. We are a little nervous about the night shift as she is a good sleeper, and if she isn't sufficiently awake, she likely will not eat as much. However, the last time she was on 1/2 feeds (35mL) she ate every 3 hours by mouth just fine.
 
She is not on TPN yet (the nutrition that is good for her but hurts her liver after a while), and as of right now she doesn't have an IV. She had an infiltration on this one (which makes #5 IV that she has lost since last Sunday).  This is where basically the small vein can't handle the pressure of the IV and it starts to go elsewhere causing it to puff up the skin.  She also doesn't have her NG feeding tube, so she cannot be lazy about eating! We are hopeful the doctors will give her a couple days on this plan so she realizes she has to eat by mouth and cannot rely on the tube.  We don't want them to go with this plan and then freak out over a little setback when they have been changing the plan so much lately.
 
Her belly x-ray was less gassy today than yesterdays, but still semi-gassy. Which basically tells us nil. She always has had some gas but because everything is all jumbled together in her belly, there is no telling how it should be normally. 

We are hopeful that this plan will allow Karsie to eat like a normal baby and she will get as much as she needs at a pace that is good for her. And we are hopeful that this will work and she will get to come home without a tube and eating everything by mouth (which would mean more sleep for us)!!

Monday, November 2, 2009

The Pendulum Swing is Killing Us!

We were less than 24 hours from taking Karsie home and then she took a pretty big step back. Kevin was holding her and she started to throw up.  While she is a pretty spitty baby, this spit up was pretty dark yellow, a sign of possible obstruction.  They did another x-ray and it came back a little worse than the other x-rays taken.  

At this point she has been backed off to 50% feeds, an order by Dr. Saenz, and they are going to give her a chance to fix it on her own.  Dr. Saenz is coming in tomorrow to take a good look at her and write out a plan.  We're sure that they are going to exhaust every option before surgery, but to be honest, we're thinking that surgery is on the horizon for Karsie.  

They are going to be putting her back on the TPN and fat tomorrow because it's been a long time since she has gotten her full feeding, so she's not growing.  They are probably going to be doing some extra tests to see what exactly is going on.  

This is very upsetting to us as she was doing so well lately and it is very possible that we are going to have to start all over again.  We hope that she can correct it on her own, but we're not counting on it.  We're so exhausted with all of this and feel like we're being pulled in so many emotional directions that it's starting to take a toll on us.  So again we return to the prayer well and ask for more.

Catching Up!


Sorry we've been out of commission for a few days.  It's been an incredibly busy time for us. We had a fun time with Karsie on Halloween.  But she was one angry cow during picture time in the NICU.  We had to shove her arm into one of her sleeves as her IV was in the way (we made it work).  She is pretty grumpy not being at home, which we kind of enjoy.  However, she was REALLY grumpy Halloween.  Many nurses came by to look at her costume, and even though we didn't get a good picture of her being happy, she did have a long time where she was content.  

Yesterday we celebrated Michelle's birthday by taking a day off and going to Disneyland.  We visited Karsie at 6 a.m. and returned to the NICU at 10 p.m. just in time to see her sleep both times.  Since Michelle gets a free day at Disneyland on her birthday, we took advantage; plus with our friend Dave having the same birthday, it led to a good day of everyone in the park saying "Happy Birthday" every 5 minutes.  It was exhausting, but very fun.  So, we didn't get to update you guys for a while, but we're back now.

Karsie:  She has been doing fantastic!  The plan is still to be out of there sometime Tuesday, but incredibly we're still not sure what the plan is even though we've asked.  There are some details that are a little confusing.  She has not thrown up at all as of 5:30 this morning.  We're not sure about after that.  She has been on 100% of her feeding since midnight last night, so we assume that midnight tonight they will increase her calories to 22 with rice cereal.  That should get us finished by Tuesday at noon; unless they want to observe her for 12 more hours, which would put us at midnight, which would mean they would extend our fun little stay until Wednesday. The other thing Karsie has been doing is eating orally almost all of her feeds.  She is pretty tired from midnight to 6 a.m. (who isn't) so she usually has to be fed through a tube at that point, but every other feeding she has been eating all of it.  Hopefully this continues with her 100% feedings so we can get that tube out soon.  We should have a vision of how she is doing and how she will do later on tonight.  We hope to have some pictures of her coming home....again.