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.

Pre-Delivery Pic

You get two this time.  This was taken during the act of delivery.  Michelle kept feeling like she was going to fall off the table because she couldn't feel her lower half, and the last thing she remembered feeling she was at an angle.  She also was shaking pretty bad from the medicine, so this was a lucky shot we got to come out clear.  This was literally minutes before Karsie came.
Kevin and Reva smiling, can't you tell?  Michelle is just to the right and under Kevin's right arm.  The anesthesiologist took this picture.  We liked her very much as she let Reva come in and she was very calm and reassuring.  

Update (8-30)

This is as close to holding as we get, but it's better than nothing. This is from Friday; when we are around for dressing and linen changes we get to pick her up. She wants a hi-five from her daddy but he can't give it since his hands are occupied.

Since this morning, Karsie has been continuing to do well. Michelle stayed home this morning and probably for the day because of a sore throat. She thinks it's just a little raw from the heat, but she's playing it safe. When Kevin went in this morning, Karsie was just about to go to 9mL an hour on her feeding and 7 mL on her TPN. We hope that scale continues to be lopsided in favor of milk. She was pretty upset at first, but then calmed down when she was picked up. Hopefully the doctors were paying attention to that. She gets real fussy at times and she screams so much she turns purple until she realizes she's not breathing. We haven't seen her patch since we took the pictures, but from what we hear everything still looks good.

Kevin had a nice visit, but had to go home again. Luckily next weekend is a long weekend.

Vanishing Patch (Graphic Pictures)

We just got it in under the wire, but as promised, here are her progression pictures. It looks much more gruesome than it really is, but this is the skin that needs to produce layers to eventually become her skin. Once this happens, she will be able to come home, provided her feeding and breathing are up to par. A little update: She was doing wonderful today. There was some spit up earlier, but they decided not to do anything about it since it was only that one time (and babies spit up) and also since it looked pretty digested, so her body is working. Plus, she is pooping regularly. Tonight we left her at 22% O2 (21% is room air) and her heart rate was down lower than we have seen it in a long time. She likes it when Amy is with her. Kevin has to go back tomorrow, but he had a good couple of visits while he was here. Now, without further delays, we present the Vanishing Patch:

This is Karsie's "birds eye" view. This is the only part of the patch that is still on the sides. As you can see her stitches are holding nicely, but at this point there isn't much need for them.
This is Karsie's right side. You can see the progression of skin changes as you go up from the bottom. All of that is healing the way it needs to. The black spot at the top has not been officially identified, but if you remember the pictures of the siloh from the beginning of her life, her liver had black spots on the top where they cauterized it, so we are fairly certain that is what is causing the darker areas.
This is, by far, the most telling picture of the amount of skin she has grown. Again, it looks like a bad scrape that is healing, but trust us, it looks better than this. It is pinker than the camera gives, but even so, she has covered her organs with her own "skin" so that's amazing. Michelle's hand is holding the diaper, but she actually was the one who pulled off the dressing. She's like a third nurse.

Adorable

Karsie is still doing very well.  She is up to 8 mL an hour on her feeding and 8 mL of the TPN. Unless there is some serious spit up tonight, tomorrow will be the first day that she outdoes the TPN.  

Pat looks amazing!  Kevin saw it live for the first time tonight and was very impressed.  In fact, tonight the nurse said that the surgeons were going to come by and take the rest of it off possibly today, but since they didn't it will probably be evaluated on Monday by Dr. Saenz. These seems to be the final days of Patch/Pat.  If Pat is still stuck to Karsie, then it is too soon, but if not, we may have to find another name.  

Speaking of the skin, we have some real good pictures to post of her current situation.  It looks incredibly gruesome, but it is not nearly as bad as it looks on a picture.  The camera catches a lot of the red color, but a lot of it is pink and skin-like.  We will try to post that tomorrow.  Just know that it is graphic.  

Until then, enjoy Karsie looking around (this is before they moved the tube from her mouth into her nose so she can suck on the pacifier and not associate the annoyance of the tube with her sucking...also it's a smaller tube).  

6 Weeks!

(Kevin) It's a little early, but I'm sitting at home getting ready for bed and anxious to get to San Diego tomorrow thinking about all that has happened in six weeks. Six weeks seems like an eternity ago that also flew by very quickly. For all of us that have been witnessing Karsie's story, just six weeks ago it seemed like any news was terrifying because she was so fragile. I can distinctly remember the first night sleeping just feet away from the NICU doors and every time the doors would open my heart would jumpstart. I was recently told by a friend that every time the phone rang those first few days they would be afraid to answer it. Yet, here we are, six weeks later and we're talking about reflux and crabbiness being problematic. How wonderful is that?

I am tempted at some point to post a huge list of all the odds that Karsie has fought through during this journey. I was recently running a list through my head of everything that she has had to deal with or overcome after birth, but thinking about before she was born and everything she has had to overcome just to arrive at birth was incredible too. Michelle and I are so blessed to have a front row seat to this miracle and we are so glad to share it with everyone. One day all of this will be behind us and we will get to take her home and show you all our miracle. I'm sure there will be moments of frustration and feeling down coming our way as long journeys fuel extreme emotions, but every once in awhile, like now, it's good to step back for a minute out of the brisk pace and look back at the long journey. It's been long, draining, exciting, terrifying, thrilling, humbling, shocking, and unbelievable. But through all of that we have been so thankful for the company. We are sure that many of you have felt all of those too for six weeks, so you know what I mean. Here's to the next six weeks! May God continue to watch over our little girl.

The Snowball Effect

Things have been looking so good lately that one of the Children's Hospital employees said to us that a lot of times when things start to look good and go well that it snowballs because the babies have more energy to spend on less problems, if that makes sense. For example, since Karsie's breathing has been getting better and better, her body is naturally able to concentrate on helping other problems like Pat, which is also getting better faster, which then gives her body time to concentrate on other things too. Hopefully this will continue to be the trend.

A quick update on our status: Karsie is still doing well. Pat is close to coming off the more the granulation tissue grows. They changed her dressing changes to every 12 hours, but then increased the amounts since, after 12 hours, her dressing was drying up and sticking to the granulation. Her feeds have been increased to 7mL, which is where we had to go back a few days ago. While this is good, her TPN level has been increase because Karsie continues to get heavier. She is currently over 3 kilos, which is almost 7 lbs. They are still going up .5 mL a day as long as she doesn't spit up. Her breathing continues to go well and she is tolerating the full 24 hours on nasal cannula. The only hiccup to that is she holds her breath at times because she has reflux. We think this causes her quite a bit of discomfort because she holds her breath and winces, which causes her to desaturate on her 02 levels. However, it doesn't take long for her to get back up once she stops holding her breath.

Finally, the occupation therapist came in and talked with Michelle, as we posted earlier, about how to play with Karsie, which has been great for bonding. She was read to last night and was fascinated by the pictures shown to her in the book. She stared at them intently. This is a new development since it was only a couple of weeks ago that she wouldn't focus for long enough to see a picture.

Kevin is coming back tomorrow which will be good for him to see his girls, but also good for the blog as most of our media (pictures, movies) is done from his computer, so this weekend the blog should produce a lot of that.

The Incredible Shrinking Patch

This morning, Michelle received a call from Dr. Saenz. This took her off guard (especially because she thought he was on vacation). He was calling to inform her that he had taken a look at patch and decided, because it was getting kind of loose, to take off 2/3 of the gore-tex. WOW! He explained that there was granulation tissue all the way up the sides, and across part of the top. The remaining part of Patch is stuck to the granulation tissue that is still forming, but he anticipates it will be removed within a few days. The mound of organs is now mostly covered with granulation tissue and some skin. The dressing changes will happen every 12 hours now instead of 6, and the dressing is the wet-to-dry dressing. This will help facilitate skin growth and healthy healing. This is all amazing news, and we are hoping that now that Patch is shrinking down, that will mean faster healing (like when you take the band-aid off the wound and it heals faster).
Another great report, is that Karsie is now off CPAP! She of course, can be put back on for a little help if she needs it, but as of today, she is on nasal cannula 24 hours a day!!! Hooray! She was breathing about 27% O2 today when we were in and doing well with it.
Her feeds are still climbing back up; she is at 6.5mL today.
Michelle was also able to meet with the Occupational Therapist who talked to her about how to meet some of Karsie's developmental needs while she is stuck in the isolet. She recommended a mirror toy, some small teethers, and books and music. The really great news is that we have been doing most of that already. We have been reading books with her for quite some time. We have the little mp3 player for stories and music as well (though we are having some technical difficulties loading the music). And today Michelle took in some little linking teether toys for Karsie to play with and suck on. Now we are on a quest for a mirror toy. The OT said that mirrors are especially calming for babies because they don't like to see other babies cry. Therefore if they are looking in the mirror, and the other baby (their own reflection) is crying, they will stop crying because it makes the other baby stop crying! How great is that! It also helps them with moving their neck because they like to see babies! Our little miracle! Patch (on a diet)... you can see where patch ends now if you look at the bottom left of the patch. Most of the sides are gone! Only the top circle and a small area towards her head remain.
Grandpa spends some time with Karsie.
Karsie is holding one of her linking toys (thanks Auntie Carolynn)! These are especially great because they have different colors and textures and they are thin enough for her tiny hands to hold onto!

And We Have Skin!

Tonight was an especially nice visit.
After the spit-ups from last night, we expected to see Karsie on 5.5mL of milk, but the nurse practitioner went ahead and bumped her up to 6mL. She will continue at her regular rate of increase (0.5mL a day) as tolerated. So if all goes well tonight, she will go to 6.5mL tomorrow. And though you might be getting tired of hearing it... she is still pooping which is fantastic news to us!
She was also increased to 8 hours on the nasal cannula tonight. So as long as she tolerates it, she will have 8 hours on and 4 hours on CPAP each shift. This is also great news!
The best news came during her dressing change. Our fantastic nurse, Amy, let Michelle help with the dressing change. While everything was exposed, Amy pointed out that the area where the patch was originally stitched was now skin!!!!! There are some places where it looks like as much as 1/2 an inch of skin has grown up!!! The patch is kind of moving up off the mound of organs. We are not entirely sure of the mechanics of all this, as the patch is/was sewn to her skin. But none-the-less, the skin is growing. There is still granulation skin at the very edge of the patch, but there is clearly new skin growing too! This is super great news because we anticipated this process taking much longer to progress. Granted, she still has a very large mound of organs for the skin to grow over, we are still pleased to see that the process is underway! We will try to get a picture of this soon.
Karsie is continuing to do very well considering all she has been through, and goes through each day. She gets messed with quite a bit... but she is a little trooper!
We are continually amazed by the power of prayer and the amazing support we are recieving. We still have a very long road ahead of us, but God is good and we are thankful for your faithfulness.

Pre-Delivery Pic

This is the scary hall that Kevin had to wait in while Michelle was getting anesthesia just before Karsie was born.  Note to any father waiting in the room:  Don't believe the doctor or nurse when they give you an estimated time to wait.  What was supposed to take 15 min. actually took 45-50.  It was not a fun wait.  

More Spit-Up

Well, after Michelle and her mom left last night, there was apparently more spit-up. Probably another 7mL. This put Karsie back to 5mL an hour on her milk feeds and back up to 9mL an hour on her TPN. She is still pooping, so the nurse practitioner said she would still go up today (by 0.5mL) to 5.5mL. This allows a little break for Karsie's stomach. She tolerated 5.5 well, so they went down and will slowly try to work their way back up again. There has been no spit-up today so hopefully this will just be a little set back and Karsie will do better this time around.
Otherwise, she is continuing to improve in the other areas. She is on nasal cannula 6 hours each shift and today she was holding steady with 27% O2. The nurse was going to check and see if that would be increased to maybe 8 hours. Her labs came back today and the TPN is still causing her biliruben level to be elevated, but the level is not increasing.
She is starting to turn nocturnal... so she was asleep most of the visit today. Hopefully she will get her schedule straightened out soon! This will not work when she gets to come home ;)
She also has her primary nurses back for the next few days! This is great because they know her and know how to handle her best! This makes both Michelle and Kevin feel much better.
Karsie looking at a picture of daddy! This way she doesn't miss him as much while he is gone!

Karsie got to wear her first sock today. Her foot was getting cold... so Michelle put a little sock on to keep her warm. The other food stays warm from the dressing on the picc line and the O2 lead.

Update (8-23)

Karsie still looks good, but we've hit our first bump in a long time.  She had been moved to 7mL an hour on her feeding, which means that she is at 7mL on her TPN (the stuff that we need her off of...they both have to equal 14 since that is what her weight level needs).  However, this evening she threw up.  Kind of a lot.  It was enough that the doctors wanted her to decrease her feeding to 6.5 mL an hour.  We're not sure if this is going to last until 2 p.m. (when they normally increase the feeding) and then go back to 7mL or if they are going to go the entire day and a half on 6.5. Either way it's a little break for her stomach.  The good news is that she's pooping quite a lot. This means that while her stomach rejected her feeding, everything is being digested and passed through...so no blockage.    

She's also getting a tad more fussy lately.  We're pretty sure most of it is just her being a normal baby, but we're also pretty sure that part of being a normal baby is being held when they are sad and since we cannot do that it can make a fussy baby.  Michelle tried to calm her a bit by getting real close and get as close to holding as possible, and it helped some the closer she got.  We are praying that the doctors will let us hold her soon.    

Karsie's Stages Through Five Weeks

Just a little reminder of how far she has come and how much support your prayers have given. It's pretty amazing to see the journey that Karsie has taken and will continue to take.  Thank you all!!!

Pre-Delivery Pic

All dressed up and ready for Karsie.  Michelle was wheeled off right after this picture and taken to the O.R.  

Update and Pictures 8/22

Great boring update today! Karsie went up on her feeds to 6.5mL an hour and her TPN went down to 7.5mL an hour. She has had no more spit-ups (even though we are fairly sure she has a mild case of reflux). She is getting prilosec for the reflux and to help everything (food-wise) continue to move throuh her. Her breathing still looks good and her lungs are getting stronger. She is on CPAP for 6 hours each shift and nasal cannula 6 hours. Her patch looks good with minimal drainage and no new ripped stitches. We are praying for many more days of boring reports... and of course super fast skin growth so we can hold her and bring her home soon!
Karsie taking a little rest... so sweet!
Karsie got to listen to Kevin via a voice recording! She was a little fussy and when this was played, she relaxed and stayed calm for quite a while. She sure does love her daddy!
Nana got to have two visits today. She is Michelle's support person while Kevin is at home. This is nice because it means Michelle doesn't have to do the night visits alone.
Our little sleeping beauty!

Due Date!!!

This was supposed to be Karsie's due date.  We were never going to go this long even if she didn't come early, but what it means is that developmentally, Karsie is term.  We don't think she will ever lose the term "preemie" since she was born premature, but as far as her development goes, she is at 40 weeks even though she's over a month old.  This makes a difference now on weight and expectations and such but after a while she will lose the idea she's a month behind.  The last time she was weighed and measured she was about 6 1/2 pounds and around 19 inches long. We'll try and get an exact weight and length today as it would be interesting to see, but she still growing strong.

Update (8-21)

We are absolutely in love with this string of boring days we have been having.  

First of all, Karsie is up to 6mL an hour and handling it.  Again, it's important for her to handle it as it shows her bowels and other digestive organs are working under the patch, plus it lessens the amount of TPN she will need to supplement what she is not getting but supposed to be getting. The TPN will start to hurt her liver if she gets it for a longer period of time.  

Secondly, Karsie has been doing so well on her breathing that they increased the amount of time she is on nasal cannula to 6 hours each shift.  In other words, she is now on it half of the day. At some point we believe they will just decide to lift the CPAP completely, but for now we are happy she is getting half of the day off of it as it shows she is breathing well.

The patch still looks good.  There wasn't as much leakage from the right side that we reported yesterday, so that is good.  Leakage isn't bad as long as it's moderate.  

Kevin made it safely to Bakersfield and is now starting the long Fall journey of back and forth from work to family.  Please pray for Karsie's skin to grow so this journey will be much shorter than we all anticipate at this time.  

Daddy says "Goodbye"

Today is a hard day for us. We haven't really said a lot about our plans for work yet. We made the decision a few weeks ago for Kevin to go back to work for the beginning of the school year. He is driving back to Bakersfield today in order to grab a few things from his classroom before school closes this afternoon. He will then be taking Fridays off as often as possible to make the trip back down to San Diego. This will allow him to save some of his days off until Karsie is bigger and more aware. This will also allow him to take some time off when we eventually get to bring Karsie back to Bakersfield with us.
We had a good visit this morning. Everything is still going in the right direction: no more spit-up, feeds are increasing to 6mL at 2pm, breathing looks good, Karsie might get more time on nasal cannula (up to 5-6 hours) if she does well for the first four, still pooping. All of this is very good news, and we are praying that this is a trend that continues for a long time to come.
A family picture... Karsie is 5 weeks old!
Daddy and Karsie snuggle before he leaves.
One more kiss... She is so in love with her daddy!

To my amazing husband... I love you so very much, and I am so thankful for your commitment to Karsie and me. We will be waiting here for you to come back every weekend... and in the mean time we will be loving you together. You are an incredible father already, and Karsie and I are so blessed to have you in our lives. I cannot wait for the day we get to be a family together in the same house. Safe travels... we love you!

Michelle and Karsie

Update (8-20)

Mostly boring news to report.  We'll target the big areas one by one.

Breathing:  She is continuing to do well on the nasal cannula that they are probably going to move her up to using that 10 hours a day.  At some point, as a doctor told us today, they will probably just call it when Karsie continues to do well and switch her to nasal cannula completely.  She was pretty much on room air and sating high.  

Feeding:  Today was a little interesting as we witnessed her first real vomiting.  It was not enough to do anything about it, but enough to be cautious.  They still went up on her feeds to 5.5 mL an hour and will continue if she doesn't spit up again.  

Patch:  Still looking good.  On her right side today we noticed a significant amount of leaking when we did her diaper change.  However, the surgeon had seen it before and so had the nurses, and are not too concerned with it as long as it doesn't get much bigger.  But overall the skin is continuing to do well.  

We met our occupational therapist today who will be working with us to help with Karsie's development.  She's a USC fan, so things are looking real good!  We are looking forward to meeting with her to see how we can help with Karsie's development while not in our own home. 

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.