Lots of Karsie

Pre-Delivery Pic

Waiting for the doctor got tiring.  

The "of the day" part had to be taken out as we have not kept up with that part.  But nevertheless, we have more pictures.

Update (8-19)

Good News:  Not much to report

Karsie was wide awake when we went in today.  She has been sleeping a lot and real well, so that's great, but there is a lot of time spent awake too.  Today Nana came in and read to her and Karsie really seemed to enjoy that.  Her respiratory rate has been keeping in the zone a lot (40-60) more lately, which is good, and she has also been breathing much more easily when she is in that zone.  Earlier when they started the sprinting on nasal cannula Karsie was either breathing faster (80's, 90's) or she was showing slight signs of higher effort in her breathing (chest up, nose flaring slightly), but she's getting better, which means she should do real well after she is switched to cannula completely.

Karsie is now at 5mL an hour.  For her weight the goal is around 15 an hour.  They go so slow for a few reasons.  One is to make sure that she tolerates the amount and not throwing up. Another is to make sure she doesn't get bloated.  You and I eat a real big meal and can loosen our belts and our stomach expands.  If she gets bloated, she has no room to expand because of the patch, which could pop more stitches.  She is still going up .5 mL a day, but the higher she goes they may increase it to a full mL an hour.

One thing we are keeping an eye on has been her chest tube stitch.  It's still on.  We think Kylee will take it out today, but it's been on much longer than it probably needs to be, but it's probably not a big deal.  Just might be a tad uncomfortable if she grazes it.  

CPAP and Nasal Cannula

Every once in a while we go back and reread the blog just for a little history lesson (it takes everything in us not to correct errors...we may eventually as we are both teachers and cannot stand it).  However, we have noticed that for the past few days of pictures Karsie is on the nasal cannula, which may give the impression that she is on that continuously.  She is only on it about 8 hours a day, but the NICU staff are wonderful and trying to time it so she gets on the cannula when we are there so we can see her face.  However, we do have a couple pictures that show her on the CPAP machine that is a bit new.  She kinda looks like Hannibal Lecter.  

Disclaimer:  Nana said "she doesn't look like Hannibal Lecter."  Which is true.  The mask does. So for now we'll say it also looks like an old school football helmet.

Karsie Gets a Bath

No Holding

With as much good news that is happening, it gets harder and harder for us to not think that Karsie is ready to go home today (even though we know that she is not even close).  

We met with our surgeon, Dr. Saenz, and one of the neonatologists, Dr. Knight, one of our primary nurses, Lindsay (who we're still not sure if we're spelling correctly), and a social worker to talk about Karsie.  

First and foremost, the decision was made that we would not be able to hold Karsie for a while. They plan to evaluate that decision regularly, but it sounds like it could be as long as a month before she is able to be held again.  We went into the meeting with two expectations.  Either they tell us yes.  Or, if they tell us no then we needed a good explanation.  Dr. Saenz was good at giving us a good explanation even though the answer was not at all what we wanted to hear.  He is concerned that because Karsie's patch is basically shaped like a mushroom (very top heavy) any movement is cause for concern.  The problem is not the holding; the problem is the transfer, which is where many accidents take place.  He seems like he just really wants to be ultra conservative with it so nothing else goes wrong since it is going so well.  We were able to live with that response (there was much more, but that was the basic idea).

The good news out of all of this is that Dr. Knight said we could do all her cares (providing nurse comfort).  Also, we were able to arrange Karsie's little condo (with Dr. Knight's help) so that we can get closer to her so there's a quasi-hold happening.  We really felt like she was wanting to help us with not only Karsie's emotional development, but our emotional needs too. 

A bummer meeting, but we are somewhat at peace with it.  We just need Karsie to be a skin-growing-machine so we can get out of there and take her home.  

Karsie Discovers Her Tongue

Karsie Prayer Bracelet

Todd and Becky:  Thank you so much for these wonderful prayer bracelets.  We both are wearing ours and it is a constant reminder to pray for our little one.  Also, thank you for all our friends at Olive Knolls that took one as well.  We were given many more, so if you didn't happen to get one, we have more.  We love them!  

One Month Old!!!

It hardly seems possible that Karsie has made it this far, but here we are.  Our little girl has beat all odds and has lived to be a month old.  If that's not a miracle we don't know what is.  We are so proud of you Karsie, and whenever you are old enough to understand all of this, please know that you have been spoiled with such an outpouring of prayer and support from people all over the world.  You have been such an inspiration to us all.  You're only 6 pounds, but it's amazing how such a small creature has made such an enormous impact on both of your parents' spiritual lives watching your story unfold.  Keep fighting Karsie!  We want to take you home!

Very Quick Update and a Funny Story

First of all, Karsie is still doing well.  She was a little napper today as she slept for almost all of the day, but was awake and a tad fussy when we were there tonight.  Not too bad though.  We love that the respiratory therapists and nurses try to put her on nasal cannula when we are there so we get to see her face during our visits and also so she's happier.  She's been having a slightly elevated heart rate (180-190) even when she's resting or not upset, but we're not sure that that's accurate because some of her wires had been going kookoo.  But she looked comfortable.  Maybe she was hot.

Anyhow, earlier today we had quite the fun time with a diaper...actually three.  Don't all good stories start with that sentence?  We wanted to see if she had pooped and we took a peek.  She had, in fact pooped, but she was so peaceful looking that we thought we would wait until she woke up to change her in case she had more (we were pretty sure she had just done it and didn't want to change her prematurely).  After a while, she just kept sleeping and sleeping and we thought "eventually we're just going to have to do this."  So we did.  Kevin started to try to do it on his own and he was doing a decent job.  He was lifting Karsie's lower half above the poop so he could start to wipe up her unmentionables.  He finally finished, set her on a new diaper, and she decided to pee....EVERYWHERE!  By this point Kevin, with a dirty diaper in one hand and Karsie's legs in the other, was defenseless, so Lindsay, one of Karsie's primaries, came to the rescue by covering Karsie with the new diaper and trying to save her bedding (a valiant effort, but an exercise in futility as her bed was drenched).  While Lindsay was doing this, Kevin was cleaning up the prior mess with the original poop off of Karsie (yes, we said "original") and throwing away the wipees that he used on Karsie.  Kevin and Lindsay then switched back (Kevin on Karsie-duty and Lindsay on diaper duty) so Lindsay worked on the cleanup, because nurses have to measure the diaper, and Kevin started the cleaning of pee off of Karsie.

Then came the volcano!  Kevin's exact words were "Oh crap....literally!" Michelle joined us at this point as she was coming in from outside the NICU.  Lindsay, a brave warrior, dove to the aid and stuck her gloved hand (thank goodness) under the "spewing lava" that was coming out of Karsie's rear to keep it from getting everywhere as there was not yet a new diaper under her. So here's our picture: Michelle is holding a pee-covered diaper with wipees and trying to catch everything that Kevin is throwing at her in a panic since he is holding Karsie's legs up with one hand and trying to help Lindsay hold the diaper that SHE was holding in her hand that was now under Karsie quickly filling up with poop while trying to use her other hand to create a barrier between that and the bedding.  

No such luck.  It might have been easier to just throw that bed away and get a new one. But, we actually managed to get out of that situation with minimal linen damage.  Just lots of cleanup. 

Pre-Delivery Pic of the Day

I couldn't ever get this mask right.  The air kept fogging up my glasses.  Yes, I pinched the metal ring.

Vent Session

It's amazing how fast we are starting to move from understanding to downright bitter that we are not able to hold our daughter. It has almost been a month and she has only been held twice. Rest assured that starting tomorrow we will start to push really hard for us to start to hold her. We find it offensive that we are not allowed to hold her or even pick her up to do her cares when they have to find an extra nurse to do that anyway. Messing with medicine, giving her shots, fixing monitors, yes the nurses can do and should do that as we are not qualified. But who is more qualified to hold their own baby and care for her than her parents? Our nurses seem to understand this and want to let us, but they are nervous to let us do that as they think the doctors will be upset if they see us hold her.

As far as her status goes, things are moving, but moving slowly. She is still being sprinted on the nasal cannula, now going on three days. They were giving her 2 hours a shift on the cannula now moved to 3 hours a shift. They want to evaluate every 3 days, so unless they increase the evaluation time or increase the rate of time spent on the cannula, she will be on the CPAP for another month. Hopefully, that will not be the case since she really seems to like the nasal cannula. When we were in today (stayed for 3 hours) she was sleeping like an angel for almost all of that and her breathing looked at ease.

She is up to 3.5 mL an hour on her feeding. We are noticing her rooting reflex now when she is awake, so we want to start dry feeding so Michelle and Karsie can bond as they have not been able to do. For any of you keeping score, Karsie is about 6 lbs. now. We also want her to do one of her feeds by bottle so she keeps her sucking and swallowing reflex, but we're sure that will depend what her respiratory rate is (and of course if the doctors okay it).

Stitches still look good.

Wish us luck tomorrow as we are planning on setting up a family conference with the doctors and plan on bringing up all of our concerns. We want to hold her and we think we have been patient enough as the doctors don't seem too concerned anymore about the stitches (at least they are more confident in the foam support).

Update (8-15)

We took a little break from the blog. Sorry. We're back.

Karsie is still looking real good. Her vitals are still looking about the same. She is still being switched from nasal cannula to the CPAP and doing well on both, but she's getting annoyed with the CPAP. She has also been a little more fussy, which all of the nurses are pretty certain means she just wants to be held. We're giving it another day and then we're going to start to push being much more involved with her cares. We want to start to learn or get trained on how to take care of her. We are her parents remember.

She is up to 3 mL of breast milk an hour now and down to 9 mL of TPN. Her patch is looking better and better. The granulation is getting lighter and lighter which starts to look like skin. We did get to quasi-hold her tonight as we just got our arms under her and her head and held her up. That calmed her down from a fussy moment. It's time to hold.

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.