Two Ponies and Counting...

So, Kevin's a sucker!  God forbid the day Karsie learns to work him because all she has the ability to do now is look at him and he has already promised her two ponies during that time (we're erasing this message when she's old enough to understand).  This message is courtesy of Ruth.

Karsie is doing very well today.  She has grown to 3.195, up 10 from yesterday.  That is still below par, but she's at least growing.  She has handled the 2 1/2 hour condensed feeding and, barring any setback between 11 and now, she will be brought to 2 hours on, 1 hour off.  In other words, they are giving her time to get hungry, one hour to be exact.  So, she is getting about 70 mL of breast milk in 2 hours and then getting an hour to rest and let that digest.  Hopefully she handles that.  Again, our goal is to get to 1/2 hour on, 2 1/2 hours off and eventually completely orally fed.  The good news with that is when she gets breast fed (especially at night) she has taken 30-40 mL, so she has it in her to do it.  We just need to keep her from throwing up.  She did have a VERY tiny spit up earlier today and a more moderate one when Michelle was there with her.  Other than that, as far as we know, she is keeping dry.  We're still keeping her on nasal cannula (per our request) to help keep her tolerating the feeding and not having trouble breathing.  

All is Still Well...

..knock on wood.  Karsie did well her first day of condensed feeding.  She threw up twice, but that's well within her normal range.  She also drank a good 30 mL of breast milk tonight and, when Michelle left, kept it down.  Also, we know we put up a video of Pinky a day or so ago, but even from that there is a noticeable improvement of the skin.  It looks very, very good.  We are very excited about that.  Time marches on..

A Plea to MOOs

We're doing an all out blitz for information lately on tissue expanders versus compression. We're still not sure we have all the information on each of those, but we definitely don't want to put Karsie through a surgery if she doesn't have to.  

Therefore, if you're a MOO (Mother of Omphalocele) or know one, or know information about:

1.  Compression Method/tissue expanders; and

2.  Who does them around us in Southern Cal (or the west coast) 

...please let us know.

Thanks.

Update (9-21)

Weight:  Karsie dipped a little today to 3.185 kilos.  This is not surprising as it seems to be her trend.  She gains and then she dips a little.  Hopefully she continues to gain.  

Feeding:  Karsie did not throw up again last night or this morning.  She also got a lot of milk breast feeding today.  Good news:  They are starting to condense her feeding today.  She will be getting three feeds in 2 1/2 hours instead of 3 hours.  Most babies take their full feed in a half an hour (a full feed roughly being 3 hours worth on average).  Karsie is currently getting 23 mL an hour, which would give her 69 mL in 3 hours.  We want to move her to taking all 69 mL in a half an hour instead of pacing the feeding hour by hour, so they are condensing her feeding.  So, instead of giving her 69 mL in 3 hours, they are giving her 69 mL in 2.5 hours.  This should go for a couple of days (assuming she handles it) and then they will start giving her 69 mL in 2 hours, and so on and so forth.  

Surgeon Meeting:  Please pray that this meeting goes well.  We absolutely love our surgeon and want him to continue with Karsie, but we know that he is not in practice doing compression wrapping.  We're going to ask him to look into it, and we really want him to seriously consider doing it as it will save Karsie one surgery.  Surgery will put her back a bit (depending on when they do it) so any time we can avoid that, we want to.  

Breathing:  We felt like we had an option.  Karsie's nasal cannula was supposed to come off today, but we also wanted her to start condensing her feeding.  When they start to do this, sometimes babies need a little extra breathing support.  We felt like we could have either taken her off of the cannula or start condensing her feeding (doing both would likely alter either the breathing or the feeding).  At this point we are of the belief that feeding is more important to start now than breathing, since she is so close anyway.  So, we asked that she stay on for a bit longer so we can start condensing the feeding.  Who knows she might be off anyway when Michelle goes back tonight, assuming Karsie handles being off of it and her feeding.   

Changing Pinky (UPDATE ADDED)

Other than the awesome dressing change, watch it again and pay attention to the pacifier battle.

Update:  Karsie has had a bit of good news lately.  We're still concerned with her oral eating, but lately she has been gaining weight.  

On Saturday we went in and we were told that they increased her calories to 24 an hour by supplementing formula.  However, she threw up 5-6 times that day, which is well above her average, so they backed off the calories.  However, they increased her breast milk to 23 mL an hour (keep in mind that the mL and calories are different, but their numbers are very similar). We were a bit bummed on Saturday until we started to see a string of weight gains that made us feel better about the throwing up.  She was up to 3.17 kilos on Friday night (really Saturday morning) and she jumped to 3.21 kilos on Saturday.  Tomorrow we'll find out if she's still on that trend.  

To add to that, we had a good breast feeding the past few times.  Two of those times she didn't get more than 5 mL, but one we're not sure what happened.  In order to find out how much she is getting, they weigh her before she eats, and then weigh her after she eats.  They can calculate the mL based off of the weight gain.  Last night she breast fed for about 10 min. and then promptly threw up a bit.  But we tried to keep everything on the towels that we weighed her with and then weighed her, and it said she drank 44 mL.  We actually were not surprised by this as Michelle had pumped a bit before usual (which makes her flow faster).  In any case, she took a lot of milk and did very well on the breast.

We have a meeting with Dr. Saenz and the plastic surgeon on Thursday to assess Karsie's situation.  Their next step is to put tissue expanders in Karsie to stretch out her abdomen for it to accept the organs.  If this is necessary, then we understand.  However, we've been doing some research lately, and we're very interested in something called a compression method (or something similar).  This is where after a few months they wrap an Ace bandage around Pinky and compress the organs inside.  Every situation is different, but we really want to find out about this.  We're pretty sure that our surgeon has not done this (it's not really surgery) and so it will be interesting to see how he takes it when we bring it up.  

Finally, Karsie should be off nasal cannula tomorrow.  Pray that her body does well without it. It's time to see her face! 

Pictures After Two Months

A good yawn after two months of life.  Compared to her first month, this one was pretty boring.
Giant Phantus - Karsie's new NICU toy.  She's not sure what to think about it yet.
Aerobics with Grandpa.

The mirror.  Karsie loves to look at herself in the mirror already.  
We're not exactly sure what happened to the flying pacifier in this picture.

Update (9-18)

Breathing:  Karsie is going to be taken off the nasal cannula on Monday, which means if she handles it, breathing will be something to check off the list for now.  

Feeding:  Karsie has been throwing up about 1-3 times a day according to the nurse practitioner today.  We're getting to the point that we believe she's just going to be a pukey baby especially given the fact that she has her bowels on the outside of her stomach.  We think the plan at this point is to start condensing her feeds starting at 2 hours 45 min (hopefully they stick to this plan).  She is currently getting 24 calories an hour, which means in a 3 hour block, Karsie should be getting 72 calories.  Normal babies will just drink up 72 calories in a single feeding and then need another 72 in 3 hours.  Since Karsie is getting continuous feeds, she is just getting 24 calories an hour.  When we condense her feeding to 2 hours 45 minutes, she will get those 72 calories in that time rather than 3 hours.  The goal is to get her condensing her feedings in a shorter amount of time.   

This weekend Karsie will not be getting the bottle, but getting breast fed two times a day. They increased her calories today by using formula mix as well as rice cereal.

Weight:  She weighed 3.15 kilos last night.  She has gone up by .05 kilos every day for the past few days which is much lower than what she needs to be gaining.  We're hoping for a growth spurt soon.     

Pinky:  Dr. Saenz came in today to look at Karsie's dressing change and said he is continued to be impressed with her skin.  In fact, he said that his work with her is pretty much done for now. In other words (we asked him to clarify this for us, so it's not just our interpretation) according to him, he's about ready to let her go home skin-wise.  So, it looks like we're just waiting on her to eat like a Turner.  We are all praying very hard that she gets over this hump and starts to handle the condensed feedings and starts to take it orally soon.  As soon as she does, we will have a little one at home.  

Status Quo Not Good Anymore

Since many of you pray for Karsie every day, we have a specific prayer request for her. Karsie needs to start to eat orally and more often. We feel that a lot of this is due to waiting for her to grow and not doing much (which we are not sure we understand anymore) and part of this is the fact that we think she is getting an oral aversion to her bottle. When we started giving her the bottle she was taking all of it or most of it. Since then, we feel she has been taking less and less of it. We're not sure if it's because we give her the feeds continuous anyway and since it's easier to let it go to her stomach than suck and swallow the milk, she would rather not, or if it's because she associates the bottle with throwing up. We think it's the latter because, thankfully, she is still into the breast milk. However, that obviously poses a problem because if she gets an oral aversion to the breast then we're not sure what happens, but either way it looks like our time in the NICU is being extended every day she does not improve.

We are going to start to push for them to start trying to condense the feeding so her stomach can hold more at one time. She is not throwing up nearly at all when she is just laying down getting it into her stomach, and she did well when they were increasing her feeding every day. If she can handle the increases her stomach will stretch and she will be able to handle more at once, which is the goal. But if she has an oral aversion to the bottle, we're going to need help with that. Thus, your prayers are coveted to be with the doctors as they come up with a plan (as we're not really sure if there is one, which is understandable since they usually deal with more accute situations, but we need a plan) and for Karsie to start being able to handle more food and like the bottle again.

Hungry Karsie

Karsie had just eaten and thrown up before this and became obviously very hungry.  We could not feed her, but we did what we could.  Pretty funny!

Back to the Updates (Pinky Picture)

No post yesterday.  We decided to take a day off, and luckily we didn't get any hate mail.

Breathing:  Karsie has been weaned to 1/4 liters of flow from her nasal cannula.  They tried to take her off completely, but she breathed a little too fast for comfort, so they put her to .250 L of flow which was down from a half liter.  Her O2 saturation levels have been great.  It probably won't be long now until she is off of it altogether, but she needs to tolerate it.

Pinky:  Everything still looks real good with Pinky.  Dr. Saenz came by today and looked at it and said everything looks real good.  They are still putting adaptix on the two yellow spots, but other than that, Karsie is growing a little skin each day.  Here's a picture of what it looked like a few days ago:

Feeding:  This is going to be our most frustrating area, we think, until Karsie goes home.  She continues to throw up every now and then, which we have been reassured is not a big deal as long as her frequency doesn't go up.  She has been put on vitamins to help supplement the breast milk as well as an increased dose of the rice cereal.  The vitamins are orange, and the other day was a little freaky when she spit up and pooped orange before we knew she was on the vitamins.  She has gained a small amount of weight since we last posted her weight.  We'll start to post that to keep track.  Her lowest weight (since a week or two ago) was 3.08 kilos. (in order to find out her weight in pounds you have to multiply by 2.2).  The next day she went up to 3.12, then to 3.11, then today she was 3.14:  A good weight for a math nerd.  We're not exactly sure how each nurse weighs, so we're not sure how to feel about each weight day by day. Sometimes they weigh with socks on, sometimes socks off...etc.  Also, she has lost her PIC line, which would have bumped her up just a tad.  Anyway, lots of variables, but the small progress is there.  We were also told that growing is not just in weight but in hair growth, length, head circumference, etc. and she is doing all those things, so all is good so far.

Feeding (cont.):  She is still not increasing tremendously on her bottle feeding appetite.  There is talk to moving her feeding to more times a day, but she still hits a wall at about 10mLs at one time.  There is also talk to try and condense the feedings so she is getting more at one time and less right after so she will start to work her way to going 3 hours of getting nothing followed by a big bottle of food.  And we thought the breathing was long.     

In Memory

Warning:  The beginning of this video contains extremely graphic birth scenes

This is a little early for Karsie's two month birthday, but we wanted to give a tribute to Karsie's grandparents that are no longer with us.  Every generation gives to the next, and we think they did a good job.

P.S.  We would also like to say Happy Grandparent's Day to Marie Koch

Happy Grandparent's Day!

Dear Nana Royal, Grandpa Royal, and Grandma Turner,

I am working hard to get out of the NICU so that we can all be together at the same time.  I have loved getting to be held by all of you at different times, but I can't wait until you can all fight for me at once.  Thank you Grandma Turner for dropping everything this weekend to come down and see me for just a little time.  I'm sorry I was so tired when you came, but when you held me, you put me right to sleep.  Nana Royal, thank you so much for helping Mommy with taking care of me.  When Daddy is gone, you make that time seem much shorter by being there to help. Grandpa Royal, you are so nice to me as you come in right after you have had a long day at work. It's hard to stay awake when you are there because you calm me.  Thank you so much for praying with me too.  I am also missing not getting to meet Grandpa Turner.  From what Daddy tells me, he was a great man, and I will meet him in heaven one day.  But not for a long time.  Thank you all for loving me so much.  

Karsie Gene

Update (9-12)

Karsie was a huge sleeper today.  Kevin and Grandma Turner went in at around 9:00 and aside from eating about 10 mL of milk, she slept the entire day away.  She wasn't interested today in breast feeding, but she has taken her new milk (with rice formula) well.  She had one small spit up in the early afternoon but for new ingredients, she has done well.  

Grandma was very excited to hold Karsie for the first time (and unfortunately probably the only time until she comes home).  

Kevin was able to change Karsie's dressing in the morning and reported AMAZING results. According to us (not confirmed by the surgeon), the skin is not the thing that will keep Karsie in the NICU.  It's almost all skin already.  We're getting to see the dressing change at 9:00 each day, so we should be able to get pretty good pictures, so we'll put them up when we can, but until then take our word for it.  It looks so good!  Almost all of it is pink.  There is only a little part on top of Pinky that is that greenish color, but the rest is pink.  Most of it looks just like skin, or healing skin.  

Breast Exam

Karsie a little milk drunk after feeding

No, not that breast exam.  Karsie passed her third breast feeding test with flying colors.  She latched on extremely well today and stayed on for about 10 minutes straight (which is long for her). At one point Karsie looked up at Michelle with her mouth covered in milk, so we know she was getting a good amount.  No spit up so far today, so as long as she is gaining weight she is looking good.  The nurse today said that they are just now starting the rice, so hopefully it won't be long before we have a little fatty.

Also, Dr. Saenz called us on the way home from the hospital (we just missed him).  He said that he was extremely pleased with the way Pinky is progressing.  He said there is a lot of pink now and that the dark spots are either gone, or not sticking anymore (we forgot which he said, but it was good).  Also, they have been covering the spots that are sticking with adaptic film, which is a film that is slimy on one side so it doesn't dry out and stick to the bandage when dressing changes happen.  It lays directly on the skin as a buffer between the skin and the dressing. Those have been working so well that he is now ordering them to be decreased and cut down because things aren't sticking anymore.  This is good news because that means Pinky has healed enough that her skin is dry, which means it will be even easier to heal as it will get more weathering from the environment.  We have been very happy today with her progress, but are still praying for weight gain. 

Cribs

Not a whole lot to report since last night.  Karsie is weighing around 3.1 kilos which roughly translates to 6 lbs. 13 or 14 oz.  She has stayed that weight for quite a long time - lost a bit but roughly stayed around the same.  When the nurse practitioner rounds on Karsie today she will decide whether or not to put her on rice cereal, but we're pretty sure she will because Laura, Karsie's dietician, recommended it. 

Also, Karsie has a new crib.  This bed, while it looks more fun, has fewer features than her giraffe bed.  She lost a warmer and a built-in scale, but she really doesn't need those anymore. Other babies need them more, so we will oblige.

Finally, there was some bad news given about the hospital visiting policy, but there was also a silver lining involved.  They are getting real close to shutting down the NICU visiting to only parents.  Reva will still be able to go in with Michelle, but only on days that Kevin is not in town.  This means Grandpa will not get to go in anymore, which is very sad as he is very soothing to Karsie.  She will just need to start healing faster for him.  However, Jennifer, our social worker, told us that Kevin's mom could come in one more time before they shut it down. They are not sure when it will be shut down, but it could be real soon with very little notice. We are very excited that Grandma gets to come down one more time since she will now get to hold Karsie.  This way all the grandparents will have gotten to do that.  

In between feedings.  She's a sloppy eater, but real curious about why Dad is doing the feeding now.
Karsie in her new digs.
Mom helps out with the tubes while Karsie dreams of not being in the NICU (we're not sure how she would do this as she has never not been in the NICU).
Karsie's new Big-Girl-Bed.  It can tilt up more to help with reflux.

More Issues

Karsie did not throw up much more today. She did a little bit this afternoon after oral feeding time, but none after that. However, Laura, the NICU dietician, came by and worked with us on a plan to supplement Michelle's breast milk as Karsie is not gaining weight. Her length is great (a bit long) and her head circumference is okay (a bit small) but she is not getting heavier. This is probably due to a ton of reasons, but mostly we think she isn't getting enough nutrition with the breast milk. For most babies, breast milk is all that is needed. It contains everything a baby needs. However, Karsie's situation is a bit different as she was a preemie and also because she has Pinky.

Pinky takes up a lot of calories and energy to fix, so the dietician thinks that supplementing with a tiny bit of rice cereal will help. This should help a bit with her weight, but it also could help with her reflux as it can settle the stomach a bit more than the milk as it is heavier than the milk. The other reason that she might be losing weight is that she is not getting all of the nutrients as she has to feed through the tube, so some of that value is lost before it even gets to her. Laura did say that she thinks we're right around the corner from getting to where we need to be, but she is concerned about the weight until it goes up.

Dr. Saenz came by today and told the nurse to keep the dressing on until he could come by and look at it tomorrow. So far everyone has been very impressed with Pinky's growth. We haven't seen it in about a week, so when we can see it we'll try to take a picture. Hopefully we'll be in when Dr. Saenz comes by.

Finally, we happened to be in there when a doctor named Dr. Hilfiker came in with another patient being admitted. This is significant because she was the surgeon who repaired Karsie's umbilical vessels when she was bleeding out at birth, thus saving her life. We haven't been able to thank her personally yet, but until then, we appreciate everything that you have done for our daughter. Thank you!

Feeling the Blues

Karsie had kind of a rough day today.  She has been advanced to 19 mL an hour and her goal for her weight is 20.  She will be at that tomorrow if they decide to stay at the same rate.  But she has been having a couple spit ups lately.  One of her spit ups happened today a few hours after her bottle feeding.  She vomited quite a bit and then tonight she vomited after her bottle feeding.  As far as we can remember this is one of the only times she has spit up multiple times a day.  Plus she was visibly in pain from reflux or something else.  She was quite fussy, and it's hard to see that especially with the possibility of going backwards on the horizon.  We are hoping and praying very hard that she continues to handle her feeding because she is so close.  Nonetheless, we are a little blue today.  

Roller Coaster Day

Today was a decent day. Karsie started off with a dressing change done by the surgeon. He was very pleased with what he saw. According to him, Pinky looks really great. This was followed by her morning bottle, but she only took 12mL of it... and then proceeded to spit all 12mL back up. She was given the remaining 5mL through her feeding tube. She went up to an hourly total of 18mL at noon. She ate 11 of the 18mLs at her 3:00pm bottle. Then she was given the last 7 in the feeding tube. She didn't have any more spit-ups the rest of the day. Then she took tonights bottle in record time... 18mL in about 4 minutes. And she kept it down (as of when we left). She is still working on stretching her stomach, so it is ok for her to not take all of the bottle every time it is offered to her.
Her O2 was a bit of a roller coaster as well today. She has been at 1L flow for a while now, so she was dropped down to .5L flow. She didn't tolerate that so well, so she was moved back to 1L flow. She did spend a good chunk of the day breathing 21% O2 though... she just needed a little help with the flow of air into her lungs.
Tomorrow, Karsie might get to try to breast feed. If the lactation consultant is available and she has tolerated her feeds, Michelle will probably get to try to breast feed her for one of her oral feeds (in place of the bottle). This is super exciting for Michelle, who has until now spent countless hours pumping her milk. Hopefully this will go well and this will be a daily thing!
Everything is moving in the right direction, today was just a bit of a roller coaster.

Karsie Works on Her Bottle

Evening Update (9-7)

Karsie took her feed well tonight. She has had a good day with the bottle as she has taken all of her milk without any spit up (except the very little bit this morning that we reported). She is off of the TPN!!! She is getting clear liquids with glucose for a few days just to make sure she handles the switch okay, but so far so good. We may have forgotten to mention that if she handles being off of the TPN for a few days she will most likely have her PIC line taken out. This is the line that is inserted from her foot into one of her veins and goes directly into her heart. We will be happy to get this out for multiple reasons. One being it gets a line out of her body; two being it keeps a possible infection away; and three being we can dress her feet with socks and onesies and such.

"Goodbye Daddy, See You Soon..."

Karsie should be off of her TPN in a couple of hours. Around noon they typically change the feeding, but they may wait a little longer today to make sure she is handling everything okay. She had the tiniest bit of spit up during her feeding today, but they aren't going to change anything it sounds like. That means that unless she spits up more, which she hasn't done on the continuous feed in a very long time, she will be on nothing but breast milk (feeding wise) at the end of the day. We are very excited about that as it will hopefully give her liver a chance to heal itself.

We are noticing that Karsie hits a wall, so to speak, when eating orally. Around 10 mL she kind of gets tired, or full, and doesn't really want more. We haven't talked to a doctor about this, but our theory is that on continuous feeding her stomach only has to hold a certain amount of food at any given time. During the course of an hour she is getting about 16-18 mL in even increments. When she is bottle fed, she is given the same amount of milk all at once, which we think makes her fuller quicker and might be a bit uncomfortable, which could trigger reflux. We're hoping that when they start to consolidate the feeding into bigger chunks that this will start to expand her stomach so that she can handle more milk in a shorter amount of time. Just a theory.

Her breathing has been consistently okay. She does desaturate (go down on her O2 level) when she cries or moves a lot, but hopefully that will go away.

So far Pinky still looks good. They are covering it with a slimy film instead of wet gauze so that it stops sticking to her scab when they pull it off. Other than that, there isn't really any news to report. It still looks good and looks like it is healing the way it needs to. One day at a time...

Thank You Babybeblesseddolls.com

Karsie LOVES her doll!  We tried to get a good image of her interaction with it (after she examined her for a long time) but they all came out a little blurry.  We continue to be very thankful for babybeblessed.com for featuring Karsie and promoting prayer.  She is a real testament to the power of prayer.  

A quick update:  Tomorrow she goes off TPN providing there are no setbacks.  They have power weaned her on her feeding to the point where she will be taken off of it tomorrow.  Also, she has taken another small step forward on her breathing as her O2 flow is now at 1 liter.  When she is weaned to .5 then 0, they will most likely take her off of the nasal cannula.  

Prayer request:  This isn't a major concern yet, but Karsie is having some bad reflux lately, especially when she is orally fed.  We are a little nervous that she will develop an aversion to the oral feeding as it makes her stomach hurt, but so far it hasn't.  We're trying to develop ways to stop that, so we request a little bit of prayer on that.  Also, her blood pressure has been a teensie bit high lately.  The doctors aren't real concerned about it, but they are watching it.  We have a continual prayer request that she does not develop an infection as well.  That would set her back quite a bit from all of the progress she has made over the past few weeks.  Thank you so much.

Strawberry Girl Plus a Game Day Photo

Karsie and Her Hiccups

"Pinky" it is...

We know it's a half hour early, but we're going to call the name race:  Pinky wins!  For now, her bump will be called Pinky.  We say for now because we have gotten a lot of response from people who didn't realize that many of the names meant anything or stood for anything and they would have changed their vote.  We also have had a lot of other names sent to us (or attempted) after the deadline.  We definitely don't want to make this a huge ordeal because, let's face it it's not, but it was way fun, so we'll put up another poll in a few weeks with the other names INCLUDING explanations.  Our fault for not including that this time.  However, it was fun to have a little interactive website for a while.  We also thought of putting up a poll in a while about what her first halloween costume should be.  Thought that would be fun.  Love you all.