She Likes Her Mommy

Karsie was happy when Michelle came in and sat with her.  She was apparently pretty fussy for the day shift nurse, but when we got there and Michelle touched her, she calmed down and was that way until we left.  She has been weaned every gas she has done, which makes her down to 14.  

Karsie has also been taking her food fairly well.  She has been fed two times and done well on both. We'll see how it goes from there, but even if we have to stop for a bit, she is improving.  Her bowels need to wake up, so it's a slow process.  

Feeding Part II

Karsie still is having her tantrums, but she seems to be consolable after some work.  However, her stats and gases seem to be going well.  She is still on the new ventilator and her blood gases so far have been great.  She is being weaned off of that starting at 20 yesterday.  This new machine gives Karsie air pressure every minute so it is an easier transition, but it's still very bulky.  She has been since weaned to 16 and 10 is again our goal.  If she continues to produce such good gases she may not be on this one long.

Just before we left there was discussion about starting to try and feed her again with pedialyte. The only stats that have been not so good are her blood pressure and heart rate.  However, with the boosts of steroids just given, those are expected to be high.  Hopefully Karsie will just get some rest.  

Our Little Ewok

This picture was taken last night.  We are getting ready to see her and find out if this stays.  The "beard" or chin strap is to keep her mouth closed while resting so that the oxygen goes to her lungs and not out her mouth.  In addition, she has the oxygen tube and a hat and a blanket.  This is just after one of her tantrums, so her eyes are puffy from the wailing.  Bad news for the nurses:  she's audible now. She hasn't quite learned her cry and her vocal cords are still swollen, but look out.  It won't be long now!

Her Own Worst Enemy

Kevin here:

Ok...these darling pictures that we are putting up of Karsie are in the minority lately.  She is starting to fight against herself.  I just came back from the hospital (yes...it was crazy early/late but I wanted to see how she was doing off of her ventilator) and am slightly concerned over her anger.  The poor thing has been through a lot, but the doctors say that her fury lately is not as much about pain, but about being mad (and some uncomfortableness).  While this seems to be an issue her parents are going to have to deal with, Karsie herself is becoming her own worst enemy.  She was just extabated and put on another breathing tube.  This one goes in her nose and is given oxygen.  With her anger, she is not only bearing down and wiggling a ton (which we believe is causing her stitches to loosen) but she holds her breath, which depletes her oxygen thus making her CO2 gases higher.  If she doesn't calm down, she may have to go back on the ventilator.  

Hopefully this is just a transition phase and she will break out of it soon, but tonight's a hard night as we are not sure which way she is going to go.  When I left she was calm and her stats looked good.  However, everyone is a little on edge not to disturb her because any little thing does.  She will be messed with in a few hours to change her diaper and do assessments, so another storm is coming.  We'll see tomorrow morning (or later this morning).  Anger management Karsie!  Out with the bad air, in with the good.  Namaste.    

Tube is Coming Out

So...we have a fighter.  In the good way and the bad way.  She has fought her way through three weeks of such intensity that most of us will never know, but she is fighting everything that's good too...including us.  Tonight we went in and she started to fuss.  She was given some pain medication and she fought that.  We calmed her down, but then she would wake up and throw a tantrum.  Bearing down, wailing her fists, holding her breath, etc.  We know that part of this is probably due to the steroids, which increases heart rate, blood pressure, and alertness (which makes it harder to sleep), and we're also sure this is due to her tube that she wants out.  At 10:00 she will have her second dose of steroids, after which they will extubate her.  So, hopefully by midnight tonight she will not have a tube down her throat.  

Awake and Not Cranky

Karsie looked good today.  She has been weaned to 10 bpm, which means she will be off very soon.  They are looking to give her a boost of steroids just before she goes off to help her with her breathing.  They also weaned her pain medicine to once every 12 hours instead of 8.  We'll see how that goes.  We're much happier with this plan set in place as it seems they are taking their time with taking her off the ventilator.  Last time it seemed like they were trying to power through, which is fine, but it didn't work.  We are happy that this time they are really taking their time.  

Karsie is also getting close to getting some food again.  She hadn't produced much bile and so that probably means it's close.  Patch still looks good.  When we went in we just missed the surgeon, but he said it looked good so far.  The nurse also told us that the granulation looked tougher and had a coating on it that was more than yesterday.  Signs are looking good today.

Evening Update (8-5)

Karsie is doing well.  She is so calm lately.  Her feeding came with good news and bad news.  She took her 5:00 feeding well.  However, her 8:00 feeding produced a lot of liquid and so they are stopping the feed until that goes down.  The nurse practitioner told us it would be like this, so as long as we continue to try to feed, she should hopefully improve.  For you nurses, they gave her 2 mL of pedialyte and she produced 8mL of liquid, which is much more than you want after a feeding.  We'll try again later.

Karsie's blood gases came back as being good while we were there and she was one point away from being weaned.  We're actually happy about this because we would like a little more time on the pain medication, but she's so close to being off.  

There was a little redness in one of her stitches, but it isn't too terribly concerning because if there was an infection it's being covered by the antibiotics that are already killing Lucifer. Speaking of Lucifer, he's almost dead.  The nurse this morning told us that her CRP (Reactive Protein) was close to normal.  

Random (Graphic Picture)

A couple of errors to fix:  First of all, we apparently spell it "Pedialyte."  Thank you Cory and Google.  Secondly, one of our nurses that read this blog (apparently a lot do as we have had multiple say that read it) corrected something about an earlier post that said her PIC line goes up an artery when it actually goes up a vein.  Arteries are way too fickle to deal with as we have found out.  We also wanted to make an addition to a post a long time ago about our neurologist. We wanted to put that we were really impressed with his explanation and how nice he was.  We really liked him even though we had to wait, which he apologized for even though it didn't seem like it was his fault.  He also saw us in the hall another day and said hi and asked us how Karsie was doing, even though he didn't need to and he was obviously busy on his way to do something else.  It's the small things that win us over.  

A thousand thoughts:  Yesterday we decided to install a traffic counter at the bottom of the blog just for curiosity's sake.  We became curious when we had been told by numerous people that people that they know and other people that THEY know read the blog.  We're very humbled at what our little girl means to so many people, we just didn't know how much.  While we may take it off, we just wanted to share that in less than two days' time, we had over a thousand people visiting the site.  We know that this could be our family obsessively pressing refresh every day, but it still means that Karsie is being thought of a thousand times in two days, which we are so very thankful for.  This means during the course of all of this we have had tens of thousands of times you have all thought of her to go on the blog let alone just thinking about her throughout the day.  We don't even know what to say to that other than thank you and we are so blessed!  This is truly a captivating story that is unfolding, and she is our daughter!  We are very proud of her and very thankful for her support.  

Karsie's Patch:  As you can see it looks like four stitches ripped and maybe one or two more are getting ready to.  We realize you may not have ever seen this side of her, so you're probably shocked at how much skin she actually does have here.  None of it is new; it was like that right after surgery.  However, the gross "new" skin is new.  That was explained to us as the liver with a coat of granulation protecting it.  That is the stuff that her skin that grows under the patch will eventually become.  The green guacamole looking stuff is just secretion coming from the incision for the past week and a half.  It's normal, it's just gross.  We're praying the stitches hold for a while, but Dr. Saenz did say right after he put it on that some stitches would rip, but I'm not sure he meant this early.  Stay still Karsie. 

Update (8-5)

Lots happening today.  First of all, the good news.  She has weaned down on her bpm to 12.  She's real close to being able to get off of the ventilator.  She had a string of good gases last night, so a few more and we might get to hold her.  Also, they will quite possibly start to feed her today.  She has stopped producing such dark green bile and is only producing very small, light green liquid. This means that she is dealing with her situation well.  They will start with very small doses of pedialite (we have no idea how to spell it, so it's phonetic) which is a nutrition that is easily run through the body.  If she handles that well, with no vomiting (which we're afraid would also cause trauma to her patch) then they would slowly introduce breast milk to her.  They took out her nose tube and put in a new one for feeding when we were there.  They are planning on waiting for four hours to see if she vomits.  If not, around five o'clock they will give her a little Pedialite. Finally the pain medicine has seemed to keep her very calm throughout the day.  While this didn't stop her from throwing an all out temper fest when her nose tube was put in, it has been much easier to calm her and the rest of the time when she is not being messed with, she is quite comfortable.

The concerning news:  Her rip is still a cause for concern.  We were able to briefly meet with Dr. Saenz today and he said basically the same thing as Dr. Losasso said yesterday night, which is that it seems to be looking okay for now as long as NOTHING else goes wrong.  If so, it is a trip to the O.R. and a new sewing of the patch.  The granulation that we are seeing is basically a scab over the liver, so the liver is kind of exposed with the skin matrix over it.  This is obviously much better than the actual liver being exposed and it is extremely reassuring that she is stooling because that means that while things are exposed, the bowels are still working properly.  If we can get through a few more days of not having to restitch anything, we hope that the scab will become hard and tough enough for it to be less of a worry.  But for now, it is. Also, the doctors are going to start to wean her off of the pain medication.  While we understand this is necessary and a good thing, we definitely don't want to be back where we were before she was prescribed where we felt like there was a "wait and see" policy for three days.  We hope she still takes to the smaller doses of medicine so we don't have to worry about it.  

We plan to put up a picture soon of her exposed patch just for our records.  If gross-looking goopy wounds bother you, you might want to pay attention to the post title before scrolling down too fast.  Hopefully tonight's post will have some feeding information on it as well as some pictures of us holding her again.  

Evening Update (8-4)

We only stayed a short time tonight as Karsie seemed to be comfortably sleeping so we didn't want to disturb her too much since she has had a rough couple of days.  She seems to be doing much better on the pain medicine and we hope she stays comfortable.  The balancing act here is that they don't like to keep babies on pain medicine after they take out the breathing tube, so that may make her hurt a bit more.  However, with the tube in, she is most likely uncomfortable which makes the pain medicine necessary.  The balance that needs to happen is for her to be on long enough for her to be comfortable when they take her off.  She just needs to learn telepathy so she can tell us when she hurts.

A note about Karsie's patch.  Our nurse tonight, Amy, told us that Dr. Saenz came by and wasn't real thrilled about the ripped stitches.  He wanted to be notified immediately if there were any more rips, or if any organs were exposed.  The good news here is that the part that the patch uncovered is the skin matrix which is where the new skin will grow shortly.  And, it's quite a healthy bit of growth given the time (that's our take...the surgeon hasn't exactly told us that). When we were there Dr. Losasso, our other surgeon, came over and looked at it.  He didn't seem too concerned about it because it is doing what it is supposed to be doing, but he definitely thought it should be watched carefully.  We plan on talking to Dr. Saenz about it too as he was the one that put on the patch.  From what it sounds like, if more stitches were to rip, there would be another minor surgery to repair just those stitches.  We obviously don't want that to happen.  It sounds like Karsie ripped it from excessive moving, which we are sure was from her pain, and her bearing down so hard.  If this is the case, we are a little upset that there wasn't more effort to minimize her pain.  All of our nurses have said that they have been after the doctors for well over three days to do something about it.  Good news is that she is now on it, so hopefully she will be much more comfortable so more extensive damage won't be caused.  

She is still continuing to be on the same ventilator settings, so no movement yet.  We're a little glad that she is taking her time on this now so that later she won't have to be reintubated. 

Mmmmm....pain medicine....
FAT ROLLS!!!  Yay Fatty!

   

Morning Update (8-4)

Karsie was still ticked when we went to see her this morning.  The day nurse also thought that she was in pain.  After a while, the nurse practitioner came by and ok'd the use of continual pain medication other than Tylenol.  She almost immediately seemed to calm down and her heart rate/blood pressure went down as well.  We also noticed that she is starting to get a little chunky...not puffy, but getting fat rolls.  

She was also weaned when we were there.  She is now down to 14 breaths per minute.  We hope that with a good day she may be off of the ventilator by tomorrow.  Hopefully for good.  She is still producing green bile, albeit a lighter color of green.  Therefore, her feeding will be pushed back a bit.  We'll update again some time tonight.  Sweet dreams Karsie.  

Evening Visit

Karsie is still doing well.  We think she's in a little bit of pain, so the nurses are pushing for a little more pain medicine given to her because she's getting fussy.  Plus, we think two of her stitches ripped from her Patch which may be a result of her being fussy.  However, the good news with that is even though it ripped, her skin has scabbed and started to heal under the rip, so nothing is exposed or leaking.  

Many of you have asked about the birth weight and length.  We will probably never know how much she weighed at birth, but we do now have stats.  She currently weighs approximately 5.5 pounds.  About a week ago they started to calculate her weight (in kilos) and each day she has gone up a tad.  She also is 46 cm long, which translates to about 18 inches.  Since her gestational age is just about 37 weeks, she's pretty long...and if you could see her feet, she might rival Shaquille O'Neal.

Sassy for Her Parents Already

A quick update on Karsie's PIC line.  Thankfully they didn't need to put an entirely new line in. They just needed to adjust it and it worked.  Maybe some of you parents of kids older than infants can sympathize with us, but why is it that they are perfect angels for complete strangers (or in our case NICU nurses) but like to fuss when you are around?  She was apparently a complete doll for the nurses who were moving a tube inside her body that goes into her heart for pete's sake, but when we change her diaper the world is ending!  

For medical news, she has been weaned even more off of her ventilator.  She is down to 18 bpm and if you remember, 10 is the magic number that they start to consider taking her off.  She is still peeing and pooping like a good little girl, so that means as soon as she stops producing such dark green bile, she will get to eat!  The doctors and nurses want to see clear to no liquid coming out of her stomach as that means liquids are passing easily through her system instead of coming back out (which essentially means she is throwing it up).  So as far as the praying goes we want her to be off the ventilator, her to produce less green liquid from her stomach, her infection to go away (which it is), and when she starts eating (possibly tomorrow) for her to take to it well.  The good news is that she is going to town on the pacifier even with the tube in her mouth, so transitioning to the breast might be easier than we though it might be.  Looking back after 2 1/2 weeks you know it's been an improvement when we are praying for these things instead of praying for her to make it through the night.  We feel very happy about that.  Thank you all!!

Poor Little Thing...

Karsie's PIC line had to be messed with today.  A day or so after Karsie was born she was given something called a PIC line which is a line that goes from her foot through an artery (we think) directly into her heart so that medications can be more easily given and she only has to get stuck that one time instead of giving her multiple shots into her veins every day.  While it is supposed to last for a long time, her line got tangled or "kinked" and they are having to adjust it.  It's just something that we can't imagine feels good, and given the last few days, Karsie has been messed with a lot.  It's time for her to rest.  

Other than that she is doing well.  Her ventilator was weaned again today, so hopefully that means she is getting closer to trying again off of it.  We actually haven't seen her in close to 24 hours as yesterday we were exhausted and didn't go in for the night shift, and today we went in and since they were doing the sterile procedure with her PIC, we couldn't go in.  We are getting very anxious.  

One Angry Girl

Karsie has done fairly well today.  Her infection seems to be dwindling a bit based on her white cell production and she looks better than she did yesterday.  She was absolutely furious when we left her today.  Her tape that holds the vent tube in place came off, so they had to mess with that as well as give her more blood.  She got pretty cranky then, but we tried to hold her after that. When all of that happened and if she had an audible cry, her cry could have been heard around the world.  After Michelle was able to hold her for a bit we called it quits as her heart rate and blood pressure spiked a bit and she was flailing about and screaming (without the noise...it's like the mute button that at some point we might wish we could resurrect).  She was given some meds to help with her stress.  Hopefully she can get off the ventilator soon so we can hold her to calm her down and so it doesn't agitate her breathing tubes.   

Small Step Back

We just got a call from the hospital that said that Karsie had to be put back on the ventilator. Her CO2 levels were reading high.  Even though she's mad about the tube being back in, she needs to be breathing out more CO2.  We're all pretty sure this is due to the infection that we will now name Lucifer.  While this is not a major setback (it was always a possibility), it might mean that holding Karsie again will be delayed until Lucifer is dead.  

We Have No Words...

Good News, Bad News

Let's start with the bad news.  Karsie most likely has developed an infection.  This is common with NICU babies because of all the tubes and everything being inside for long periods of time, plus she has Patch to worry about with that being sewn to her skin.  They have all but ruled out pneumonia because they did a chest x-ray and everything came back normal.  However, other than that they don't really know where it's coming from.  They sent some labs down this morning and they will be ready in a couple days or so, but in the mean time they are pumping her with antibiotics, so it should clear up (hopefully) in a week or so.  The other thing they are concerned about is that it could be meningitis so they are doing a spinal tap to check that, but she is not showing many signs toward it being a real bad infection anyway, so keep that in your prayers.

Good news:  As you can see, Karsie is off the ventilators completely.  She has had an oxygen tube put in her nose (like athletes) and she seems to be doing fine.  She was given a pacifier and it took her a while, but she has started the sucking reflex on that.  They might start giving her food soon, but the infection possibility has slowed that down a bit.  Maybe tomorrow.  Best news yet is that we will most likely get to hold her tonight.  She is needing to take a long rest/nap this afternoon as there was a lot of stuff done to her, so she has had a busy, tiring morning, but after shift change tonight we will probably get to hold our baby for the first time. 

This is a Good Day!

1.  Karsie has had our two favorite (primary) nurses both day and night - Jamie and Ruth (although we love them all, they have been with us since the beginning and we can tell they love our little girl)

2.  She had three good poops in a 24 hour period, one of which we got to see.  Large, green, nasty and wonderful!

3.  Her ventilator settings have been weaned down to near bottom.  When we left her this afternoon her bpm (breaths given to her per minute) was 26.  When we left this evening it was 13. They say that when she gets around 10 they start to seriously consider taking her off.  We may get to see her face tomorrow when we go in.  We'll keep our fingers crossed.

4.  Karsie just looks good.  She's a fighter.

She Pooped!

These are exciting times.  Our daughter has done it!  Our day nurse informed us that during the night Karsie made a big stinker.  Medically this is good because it means that her bowels are working under Patch.  It also means we're one step closer to being able to give her breast milk.  

She is slowly being weaned on her ventilator.  Her CO2 levels continue to be a tad higher than we would like them, but they are low enough to wean at times.  We will continue to update you on the numbers, but for now she is doing well on lower settings (low for her).  Keep praying that she puts on her determination hat and starts pushing herself closer to home.  

Thank You Mercy Maternal Child Staff!

This quilt is a prayer quilt that the nurses from Scripps Mercy gave to us. You will probably not be able to see it unless you really zoom in, but there are many, many, many knots that cover the blanket that all represent a prayer that one of the nurses or one of the staff prayed for our little girl. It is full of knots, which means we were blessed with a lot of prayer. We thank you all so much for your prayers, and to honor your faith we have put it up over Karsie the first opportunity that we were given. She now has a little igloo that needs covering at night, and we brought down your quilt to cover it so everyone that looks can witness how your prayers have helped our baby. Thank you so very much!

Karsie liked having Nana hold her head. Her stats went up when her head and feet were held.

Karsie's new Snow White encasing when we are not there.

Our New Friend: The Ventilator

Karsie thinks she's sucking her thumb when she puts it up to her mouth and then sucks on the tube.
Michelle thought this was a funny setting on the new ventilator.
This is supposed to be the more common ventilator, but it's WAY more high tech looking than the other.  
Karsie gets a whole new set of tubes.

Meeting With the Neurologist

We finally met with the neurologist.  After all is said and done, we’re not really sure we ever want to know if there is another EEG test.  It creates too much anxiety and from what we can tell is not exactly an exact measurement of what we need.  I’m sure much more educated people on the matter would disagree with me, but we have made peace with the unknown at this point.

Her reading came back improved.  We were able to get a printout of both last week’s EEG and this week’s, so we have more information to go on.  Last week she had something called burst suppression.  This is exactly what is sounds like.  She has moments of bursts (think of the readings during an earthquake) and moments of suppressed brain activity, where the waves are lower than normal.  Her measurements were 10-15 seconds of suppression (where there wasn’t much happening) and 1-6 seconds of bursts (where a lot was happening). 

This week the neurologist said was not burst suppression.  She had still 1-3 seconds of bursts and this time 3-5 seconds of “relative” suppression.  This is improvement in two ways.  First of all, the intervals of suppression are lower.  Secondly, the suppression is relative, so we think that means the waves were stronger. 

The neurologist still said he’s optimistic (he was a different doctor this time) which we are content with leaving it at that for the time being.  The biggest indicators are going to be what she is telling us and so far she is telling us that she is tough and reactive.  Other than that, ignorance is bliss.  

Diaper Duty

Morning Update (7-28)

Karsie is 11 days old!  We went in today to check on her and we noticed a new friend with her:  a new ventilator!  She has been taken off the higher ventilator and moved to a more conventional ventilator. Hopefully she handles this well, and it looks like she is handling it.  This is a great first step toward getting to hold her, feed her, and eventually (not for many months) take her home.  

We were also able to start doing day to day tasks that moms and dads get to do on their newborns.  Kevin was able to take her temperature, which we think is because the babies hate it and they want to give the hater task to the parents.  Also, Michelle was able to change her diaper. Karsie's catheter was taken out, so she now is able to mess her pants.  We have video of our first change, but it's a little long and blogspot might not handle it.  We'll try.

As far as the news that everyone is waiting for, we have some of our own:  Neurologists (and many doctors for that matter) are frustrating.  Our social worker called to see if he was coming down to talk with us and he said he would "some time this afternoon."  That's about the same line as we were fed about when the results were going to come in before we had to practically hold up the hospital to get some information.  We said that we would prefer not to camp out at the hospital all day and she said that we would get a call in that case.  So, at "some point" today we should have some news.  However, we were told again by a different person that it was not burst suppression anymore, so we are hopeful that it is starting to correct itself even though it is still abnormal.  We are also getting encouraging news from people that have had EEGs or experience with them that they know someone that had an abnormal EEG for an extended period of time after birth and they ended up just fine.  While that can be a lot of anxious waiting, we're hoping that is our case if we don't get a "normal" reading sooner.  However, we should have some news from the actual doctor "some time" today.