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.

Karsie and Her Clothes

All is still going well.  Karsie's bump still looks great!  It's getting pretty dry and looks like it's healing quite nicely.  Her feeds are up to 3 times a day and she's handling them real well.  She is up to 14 mL an hour and will be at 15 tomorrow.  This was adjusted again today because when they have to bottle feed her, she has to have her continuous feed turned off an hour before and after.  Therefore, she has to make up all of the mL she is losing from that hour in the other hours.  In other words, we have no idea what her goal is at this point, but at some point she will be just bottle feeding.  She is probably going to be increased to 4 times a day pretty soon now. Breathing is still going well.  On to the next.  

More Pictures

Brief Update (9-4)

We haven't gone it today yet, so we may have a lot more to say later on, but for now everything is status quo. When Michelle left yesterday, Karsie was on 12mL of breast milk an hour and if she is still handling it she will be increased to 13mL an hour. Her goal has been moved to 17mL an hour due to the fact that she is gaining weight, so in about 4 days, assuming there is no more significant spit up, she will be completely on breast milk: a major triumph for little Karsie. Breathing and bump (soon to be named "Pinky" it looks like) are still good. The newest part of the exposed skin actually looks a little better than some of the other parts. It looks very skin-like.

Also, we appreciate all the prayer for Kevin to start to feel better. He does. He is well and going down to San Diego this weekend. Hopefully, and we think this is the case, he was just very drained and started to feel a little vulnerable to being sick (which brought on some symptoms).

And the Snowball Rolls On....

We're not so sure what we're going to do if things continue to go this way other than run down the street flailing our arms about squealing for joy.  We know it's probably not wise to get so excited, but whatever.  

Preface:  

Before we get started, there is a poll up for naming Karsie's new belly.  We just couldn't make a decision because they were all so good, so we put up a poll and will let you all decide.  At noon on Saturday we will take the highest voted name and that will be what we call it.  We decided since Bob was the first name given to it, and us being all about gender equality, we would put up girl names (or references) to vote on.  However, even though we could only put up five, we absolutely loved the other names too!  You guys are so creative!  We'll make a special post dedicated to all the names submitted because they were so great!

Chapter 1:  Bottle Feeding

What could have been a struggle ended up a triumph of gluttony.  She INHALED her food and did wonderfully on it.  She did so well that what was supposed to be one feed a day starting today was immediately increased to two feeds today and further increased to three tomorrow.

Chapter 2:  More Feeding

She is up to 11mL and hour and 5mL TPN.  Starting tomorrow they will go up 1mL a day instead of .5 so she will be getting more feeds faster.  At this rate, she will be where she needs to be within a matter of days, and then they will start to try and bulk her feedings into 3 hour increments.  Meaning her goal at this point is to get to 16mL an hour breast milk.  Once that happens, the goal is to lump it all together, slowly, to getting 48mL every 3 hours....like a normal baby would.  They are also going to start to try to dry breast feed next week.  

Chapter 3:  Discharge Estimate

Yesterday we had a family conference and Kevin asked if they had an estimate for when she would be able to go home.  The doctor said that she would need to conference with the surgeons, other neonatologists, nurse practitioners, and nurses and get a rough estimate.  It is understood that this estimate is completely dependent on how she continues to progress.  It could go quicker, and it could go slower.  But they did give us an estimate.  Ready?  6-8 weeks!

Chapter 4:  Breathing

They are starting to try and wean her off of her nasal cannula.  The only thing they can wean her on at this point is her flow.  She is currently on 2 liters of oxygen flow.  She will be weaned to 1.5, then 1, and so on.  Our guess is that if she continues to do well, they will just go until she has no flow, which means they take it out.  We'll update you guys on when they start to do this.

Epilogue:  

Prayer request.  While Karsie is doing well, Kevin started to feel very slight signs of getting sick today.  He took off half a day of work to nip it in the bud and rest, but if he continues to feel sick tomorrow after work he will most likely not be coming down this weekend.  We're hoping it's just allergies or rest that is needed.      

What a Day!

If you want good news, keep reading.  We have plenty to share.

First and foremost, Michelle got to hold Karsie yesterday and today.  We thought the picture and Michelle's smile spoke way more than anything we could type.  Karsie went right to sleep and stayed calm when Michelle held her....both times.

Patch:  GONE!  We now need to find a new name for Karsie's lump.  Any ideas?  We'd love to hear them on the comment section.  Dr. Saenz came in today and took the rest of it off.  Her skin has done a Magellan and it covers all of the organs.  Now it's just time to toughen up.  The doctors are going to try and find a way to see if Michelle and Karsie can orchestrate skin to skin contact when Karsie is being held.

Feeding:  Still going strong.  TPN is slowly dying in Karsie's feeding.  It's down to 5.5, which means her breast milk feeding is at 10.5.  They did labs today and her bilirubin levels are down, which is fantastic seeing as they had been going up slightly.  The more she continues to feed the better she will do on that because the TPN will be decreased.  Also, even more exciting, is that tomorrow she will start to try to bottle feed.  They will do this for one hour a day and see how she handles it.  Moving on.....

Breathing:  Karsie is still doing well on her breathing.  She stays real close to 22% on her O2 levels, which is only 1% off of room air.  We think we're getting pretty close to having the breathing under control.

EEG:  Yup.  There was an EEG.  We didn't know about it.  Thank the Lord!  And, for all intents and purposes, it was normal!!  The doctor did say that there was some spiking happening, but she was also moving.  It's almost impossible for a baby to have a normal reading as they move, but all of the previous two issues that was seen is now gone.  She looks as normal as any baby would look at this point.  And moving on.....

Discharge:  So...the doctors are at least talking about that now.  Not that she will be discharged any time soon, but they seem to be getting their ducks in a row.  Michelle has been questioned on what kind of car seat she has and if we had found a pediatrician.  These are questions that are new and suggest a finish line at least on the horizon.  Again, it will still be a long time before she comes home, but the word "discharge" has been uttered.  

What a day indeed.....   

A Good Day

We Are Blessed!

On the day Karsie had her surgery to get "Patch" I stumbled upon a website that has turned out to be such a blessing for us. I was needing some encouragement that day... and that is exactly what I found.
Baby Be Blessed Dolls is a little organization run by a few amazing gals who love to sew and love the Lord. They have taken their talent and created these beautiful dolls. Each doll comes with a scripture patch right on the belly (fitting eh?). They have little girl and boy dolls as well as super adorable lamb dolls. I am in love with these dolls.Each month these ladies select a family to bless as part of their "Give a Blessing" ministry. For the month of September, we are that family! We are humbled and thankful to be a part of their ministry. And we are so grateful for the way this will spread Karsie's story and hopefully bring more prayers to the Lord on her behalf.
For those of you who have been following the blog, you have seen the progress she has made so far. We are convinced that her progress is a direct answer to the many many prayers lifted up by our friends and family and even people we have never met! We know this journey is far from over and we know your support will help us continue walking.
So, please check out the website, and continue to pray for our little miracle!

Groggy Karsie

Karsie had just woken up from a long sleep.  I'm sure many of you can relate to the faces she makes when you just get up in the morning.  

Very Brief Update (8-31)

Feeds:  Up to 9.5 mL B.M. and 6.5 mL TPN

Patch:  More taken off today.  Saenz said it was down to about a quarter of what it was originally. Hopefully Michelle will see it today and take pictures if she sees it during the night shift.

Breathing:  Still strong.  She was at 25% O2 and sating in the high 90's (which is good if you don't understand the jargon yet).

Announcement:  We may have a neat announcement sometime tomorrow unrelated to Karsie's medical needs but still Karsie related.