Two Steps Forward, One Step Back

Everything is still going well, but we're running into another race against the clock.  As we have stated before, Karsie is being supplemented her food while she is not getting full feeds of breast milk. Even with the breast milk, Karsie is needing to be given something called TPN (Total Parenteral Nutrition).  It has the nutrients that she needs to survive and does not have to be digested.  However, the TPN is a necessary evil as long term use starts to hit the liver hard. Karsie had some labs done today and on her liver enzymes her bilirubin was trending higher. This is expected, but we are needing to get Karsie off of this as soon as possible.  The way to fix this is to have Karsie able to handle much higher doses of breast milk.  The more she is able to handle, the less TPN she will need to get all of her nutrients.  Right now, she is on a good pace. Her long term goal is 15 mL an hour.  She is currently at 2.5 and being increased .5 mL every day. For every mL she increases on breast milk she is reduced a mL of TPN given.  She is currently at 10 mL an hour of TPN.  At this rate she will be at 15 mL in about 3 weeks, give or take.  If there are no setbacks, there is no problem, and even if there are some setbacks, the liver can repair itself.  However, this cannot go on for a whole lot longer. She is also being given medication to help those levels.

The rest of the news is good news.  She is being "sprinted" on her nasal cannula which means she is being given the cannula 2 times a day for 2 hours to see how she handles it.  She did great today.  The video we posted earlier is during her time on the nasal cannula and you can see she is alert and happy (until the end...but she calmed down quickly after that).  We came in tonight as well and she was reduced on her CPAP to a rate of 5, which is less pressure than 6, and she was, for the first time, at room air, which is 21%.  And handling it!!!  She troopin' along. 

Her patch looks good still.  It's very close to looking like skin.  The green color is turning much lighter and looking thicker.  Now that she's not able to hit herself even though it hurts to do so (can't babies just use reasoning to stop doing that?) she doesn't go through that downward spiral making her so mad, so she's been much more pleasant lately.  

Finally, Grandma Turner was able to see her today.  We are still very sad that Children's makes us choose only 2 people to go in other than us, which essentially makes this Grandma's only visit to see Karsie until she's out of the NICU.  However, we also realize that an exception was made on our behalf, and while we do not at all agree with the rules we are all very thankful that we were given this gift.  We spent a lot of time with Karsie today, most of which she was awake for.  Grandma read her Bible stories and we held her hand and talked to her.  It was a magical time.    

Karsie Looks Around With Grandma

Update and pictures to come, but as this has been a very busy day and we are about to go back to the hospital, we only have time to put this up....enjoy.

Update (8-13)

Good times still!  Everything is still fairly status quo.  Breathing is still at 6 and stitches are holding strong.  Actually, the nurse practitioner, Kylie (she's spent enough time with Karsie to earn a name mention, but we're pretty sure we misspelled her name), said that the stitches actually look less exposed than before, which is a good sign.  Plus the granulation is continuing to strengthen.  

Her feeding has been increased to 2 mL per hour.  The goal is 3mL.  We should be within 2 or 3 days of good results to go to 3 mL.  They did say there was the tiniest bit of white spittle, which they said just looked like a good, juicy burp, leaking on the side of her mouth, but nothing even close to not wanting to increase.  

We are thinking that tomorrow she will be on the nasal cannula.  She is continuing to breathe a little fast, but it seems to be slowing down a bit to closer to normal, so keeping our fingers crossed.  Kevin's mom also gets to go in tomorrow.  Unfortunately with the rules being so strict, this will be the only day she will get to see her until Karsie is moved.  In fact, this is actually an exception that is being made for us, but we're thankful.  

Pre-Delivery Pic of the Day

One Size Fits All.  There's something wrong with that!

So Funny

We had to post this tonight because it was so hilarious!  We went in to visit tonight and she was sleeping like a little trooper, but her diaper needed to be changed and her temperature needed to be taken, so we had to wake her up. In doing this we made her a tad angry and she fussed a bit. However, for some reason, when we lifted her up like this she totally calmed down and kind of liked being in this awkward position. She went to sleep like this.  We laughed so hard at this and made Ruth take a picture.  (We edited her private parts so she wouldn't hate us in the future...so in case you're concerned feel safe knowing that they're still there).

Pre-Delivery Pic of the Day

This picture was taken just before they wheeled Michelle off to surgery.  This was a "let's take the final picture of us just the two of us" type of picture.  Michelle convinced the doctor to let her take a quick shower just before...that's why she has wet pigtails.

Update (8-12)

Karsie is still looking good.  We're on a bit of an upswing here which makes us a little cautious. Her food has been increased to 1.5 mL every hour increased from 1 mL every hour.  She's pooping a little more frequently, so that's great!  

Her breathing is still a little fast, so the doctors have still not taken the CPAP off, but it looks like in the next day or two it will come out and she will be put on nasal cannula.  

We did talk to the nurse practitioner and the surgeon today and none of them are under the impression that the holding was the cause of the ripping of the stitches.  They both, in fact, said that they are not sure what caused it, but the holding certainly wasn't the leading cause and didn't make a tremendous amount of difference even if it did have a slight impact (paraphrased).  We didn't see the doctor that told us originally that the holding was the cause, but we feel much better knowing that the rest of the staff is not under that impression. However, it does seem that they are continuing to withhold the holding for a while just to play it safe, which we are okay with, but only getting to hold her twice (or once in Kevin's case) is just a big tease.  Hopefully her granulation will heal up even faster than it is so we can get back to holding her.  So far it's doing well and she has not ripped any more stitches.  We took a look at it today and the unripped stitches look very snug.  

Karsie's Blog Helping Medical Issues

We have found another reason why we keep this blog going.  Today one of the doctors came by and basically said that they learned from this experience that they will want to keep the parents from holding their babies after the Gore-Tex patch is put on as it was the reason Karsie's patch ripped.  We felt like we were kind of blamed, even if that wasn't the intention, for Karsie's patch ripping.  

While at the time this comment stunned us and made us feel bad, we looked up on the blog at the times we held her versus when her patch ripped a stitch.  You can even check.  July 31 was our first time getting to hold Karsie.  August 2nd (during the morning) Michelle held her while she was being extremely fussy just for a little bit until we finally decided that she needed to be back.  It was on August 3rd, more than 24 hours after Michelle briefly held her the second time and almost four days after we held her the first time that our nurse informed us of two stitches ripping.  So either they missed the ripped stitch at least 4 times (as they are supposed to change the dressing every 6 hours), which is doubtful, or holding our daughter didn't cause the ripping of the stitch.  We're pretty sure it's the latter.  

We plan on nicely explaining this to the doctors, but we're also sure it's in their chart, so there should be no miscommunication there.  Either way, it's not a nice thing to hear, but we are put at ease as we were able to look it up.  Hooray blog!

Same ol' Same ol'

Not a whole lot of change since yesterday.  She was as alert as we've seen her, so that was a nice treat.  She hasn't had any more of her apnea episodes and she is continuing to eat well and digest.  Patch still looks good, so we're happy campers.  

Burrito Girl

Karsie likes being wrapped up like a burrito as many babies do.  Since we have figured this out she has been much less fussy.
Patch's new support.  There's wet dressing on the incision, foam right over that, a shield barrier over that tied by the ties you see.  Since this picture they have added lots of gauze to cover everything.  
And when all is said and done, Karsie gets a big blanket over her.  We really hope she is not afraid of birds because we've really outdone ourselves with the bird theme.

Pre-Delivery Pic of the Day

This was our nemesis during the month or so before Karsie was born.  Michelle was hooked up to this monitor (as many women are familiar with we're sure) that read Karsie's heart rate on the left and Michelle's contractions on the right.  This was taken the day before we delivered.  The scroll on the right reads the same thing only it draws it out for the doctors and nurses.  On the left side of the scroll reads the heart rate which they like to see fluctuate and keep up especially during a contraction.  The right side of the scroll are the contractions.  You can see one big one as it looks like a big hump and according to the numbers Michelle was having one while we took the picture.

Ding Dong...Lucifer's Dead!

Today was the day Karsie would have been delivered had she not decided to come early.  Maybe it was good it was on her terms.  

She is still continuing to be calmer.  When we are there there have been things done to her that usually make her mad, but she is able to be comforted.  She has lately been wrapped up tight with straps holding her limbs snug which we think makes her happy.  Also, her patch has been secured amazingly.  We watched the nurse change her dressing and she unwrapped foam, tons of gauze, wet pads, shields, ties, and cover it with a foam pad and a blanket.  That thing's not going anywhere (hopefully).  The surgeon also came by today and said it still looks good.  We were able to see it today and it doesn't look as high as it did earlier and the part that is exposed is really granulated, so things are looking good at this point.

She has been giving lots of spitup lately, so instead of feeding her 3 mL every 3 hours of milk, she is getting a continuous feed of 1 mL every hour.  

Her breathing has looked good except one thing that happened when we were there.  The first 5 minutes or so that we were there she had an episode of apnea where she just forgot to breath or stopped breathing for just a bit.  It was slightly concerning to us as we were seeing her turn a tad bluer, but it apparently isn't too abnormal for preemies.  They grow out of it after a while and she was able to turn it around quickly, but seeing your daughter turn blue isn't too fun.   This was apparently the only time she had done it and it was a little suspicious since she was given a bit of morphine last night, so we're hoping that was just a reaction.  

Finally, her infection is gone.  Lucifer is dead.

Pre-Delivery Pic of the Day

We realize that there was a dead space before delivery that there weren't any visuals given. We do have quite a library of pre-delivery pictures that we thought would be fun.  We'll try to post one each day if we can.  This is Michelle's crazy uterus contracting right before a sonogram. You can probably tell the heart shape as there are two bumps on the sides and a soft-looking middle.  Dr. Dowling encouraged us to take a picture of this as it is a textbook shot.  

Karsie's First Lunch

We ran out of memory before it was done, but this is our daughter's first lunch.  She has been doing fairly well on feedings after this.  She has spit some of it back up, but she is digesting it. It'll be a slow process, but this is the first step to getting to bottle feed followed by the ultimate goal of breast feeding.  We still have the obstacle of swallowing to overcome, but one step at a time.

When we went in tonight she was still very consolable.  We took her temperature and changed her diaper, which she hates, and she only fussed for a bit.  She seems to be trending toward being able to be calm.  Stitches are still holding and no change on her breathing.  A good day today.

Happy Days

After three weeks and two days....Karsie was fed breast milk!!!  She has been doing very well on her eating and today was her first meal.   We will hopefully have a video of that first feed up later today.

She has been so calm today!  Both Jamie and Ruth (our night and day primaries) told us that she slept most of the time and when she did get up it was much easier to console her.  We hope this is the trend from now on.

Karsie's patch rips are up to seven, but there is some good news.  First of all, the doctors and nurses have fashioned a support for Karsie's patch so she doesn't hit it directly and so that there isn't so much pull when she is on her side.  Add to that fact Dr. Saenz said that she can be on her back, it will hopefully slow down this deterioration.  Secondly, we have a specific prayer request now.  Dr. Saenz said that if we can get through a week or two without something big happening like the liver or bowels poking out, or lots more stitches ripping, we might be out of the woods because the granulation will be much more scabbed and able to withstand the patch not being there.  

Karsie's breathing was a bit quick earlier today, so they upped the pressure a tad, but her gases still looked great and she is still doing very well.  

Overall, today was a really good day for her.  

Find a Happy Place

We seem to be racing the clock.  Karsie busted another stitch.  We are really hoping that this might just be the bowels expanding as they move a bit and are now getting fed because that will eventually go down and maybe not be so detrimental to her patch.  However, it could just be that she is continually uncomfortable with the tubes in which case she needs to hurry and get those out so she doesn't get so upset that she continues to bust stitches.  It's not like those will heal and grow back together.  However, the surgeon is still saying he doesn't want to take her to the OR for that, so as long as her vitals don't plummet or a piece of her liver doesn't just start hanging out, she's staying put.  But there's only so much more that can happen before they just bite the bullet and take her in again which would mean a whole new patch or part of the patch along with another round of weaning off ventilators.

Good news:  Everything else!  She is now not getting any supplemental breaths.  She is getting something called a CPAP (continual positive airway pressure) which is just pressure given to her constantly.  Our lungs are like a balloon that we have to blow up.  You and I have a stretchy balloon because we are used to expanding our lungs.  When babies start to breath, especially preemies like Karsie, every breath is like that initial blow up of an empty balloon until they get enough strength that it gets stretchy like ours.  This new ventilator is like keeping the balloon blown up just a tiny bit so she doesn't have to use such force to blow up her lungs.  When she gets off of that, she is moved to the conventional nasal cannula.  She is having good gases still which means only a couple more of those and she's off the CPAP.  Also, she is still feeding well. Only a night to go and she will start getting breast milk fed to her.  We are really praying hard for her patch since she is doing everything else so well.  We really don't want to go through this all again.  But until then, praise God for everything else.

Update (8-8)

When we came in today Jaime, one of our primary nurses that are fabulous, told us that she just conked out 5 min. before we got there but had been very angry since 7 o'clock.  However, the entire time we were there, which was about 2 hours, she was asleep and her vitals were great. We are thinking that we will need to be spending a lot more time there, even though it gets exhausting, because she responds well to someone other than the nurses soothing her.  She just needs to be held.

Concerning news:  She broke another stitch.  The surgeon came by and still though it didn't warrant a trip to the OR, but if this continues it will.  We hope that the stitch that broke was one of her stitches that was close to breaking already.  

Happy news:  She is on 10 on her ventilator.  She will be put on another setting on her current Ewok-looking thing that just gives her constant pressure (light).  If she does well on that she will be put on the nasal cannula, which is what she had for a day before she had to go back on. This time she should be able to stay on it because she has been much more slowly weaned. Also, she's continuing to eat!  We are a day away from giving her actual breast milk as long as she keeps doing well on the pedialyte.  

As long as she doesn't have to go to the OR (which means we start this whole ventilation process over again) things are going well - minus the angry girl sometimes.

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.