One Angry Girl

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

Small Step Back

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

We Have No Words...

Good News, Bad News

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

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

This is a Good Day!

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

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

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

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

She Pooped!

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

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

Thank You Mercy Maternal Child Staff!

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

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

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

Our New Friend: The Ventilator

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

Meeting With the Neurologist

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

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

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

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

Diaper Duty

Morning Update (7-28)

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

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

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

EEG Test Results

There's cause for sadness and cause for hope.  The results still came back abnormal, which is very discouraging despite all the encouraging signs.  We were hoping that we could exhale a bit after so much anxiety, but alas, we have something to worry about for a while it seems.

The reason for hope is that it looks as though there was a slight improvement from last week. While I'm sure the neonatologist that gave us the results would be upset that I'm quoting him (because we have yet to meet with the neurologist who seems to think that making us wait a day is a good idea) but he said he wouldn't call this latest test burst suppression like the last one. However, it still did some of the same things and this week is a little more reliable than last week.  Again, we hope that the improvements continue and Karsie naturally fixes the problem, but we're getting a little more scared.  

We meet with the neurologist tomorrow and he will tell us more about the readings.  We will update you as soon as we can thereafter.  Please continue to keep Karsie in your prayers and pray for her little brain to fix itself soon.  We could really use a break.

EEG

We're not sure exactly when the neurologist is going to do this test, but this is the next scary test staring at us in the face.  We really need lots of prayer for this.  If you are not aware of this situation an EEG measures brain waves for an extended period of time.  During Karsie's birth, when all of the complications and blood loss occurred, Karsie lost a lot of blood to her brain. From everything that we have been seeing, there are good signs pointing to the fact that her brain did not take a huge hit, but it did take a hit.  Last week the EEG measured something called burst suppression.  This is where during the EEG her waves measure a lot of activity for a short time followed by a much-less-than-average activity for a short time.  This was a sign that her brain took a hit and could be a reading of many severe complications.  However, this could also just be a sign that it was Karsie's first week of life and she had undergone major trauma.  In any case, the doctor has planned to do another test early this week (we're not sure if surgery will push it back) to test it again.  If it reads "normal" or at least that it is beginning to improve, it looks as though Karsie is out of the woods for any long-term brain damage. However, if it reads a burst suppression again, we are in for a long, emotional journey with her brain development.

Please keep her and the EEG test in your prayers for the next few days if you can.  She already is a testament to what prayers can do, and we are hoping for a good outcome for this as well. 

The Snow Cone...(No More Graphic Pic Warnings)

We say goodbye to Bob and we welcome "Patch" to our family for many months.  Estimate the size of Patch from this first picture as the rest tend to make it look much bigger.  It's still pretty big, but not as big as it might appear. 

Surgical Update

Dr. Saenz came by and talked to us about the surgery.  Karsie did very well.  Her blood gases apparently went up, but that was expected.  There was no blood loss.

They put the patch on her and sewed everything back up.  They really did not mess with anything so no bowel or liver went in.  They opened her up just a bit more cutting down to get a more open opening instead of a narrow opening, but other than that, things were very mundane.  She apparently looks like she has a little snow cone on her belly.  We will take pictures when we get to see her.

We would like to break all the serious anxiety by bidding adieu to Bob the omphalocele.  He is where he belongs now.  

She's Out

No specifics yet, but the nurse just came in to tell us that Karsie made it out of surgery and it seems as though everything went ok.  It went much, much faster than any of us expected, so we're hoping that's a good sign.  The surgeon will be in to tell us specifics in just a bit.  

Thank you all so much for the prayers.  She will need many more, but you have all helped so much during all of this.  We are so humbled to be a part of this story that seems to be unfolding. 

Karsie is in Surgery

We just got back from watching Karsie go into surgery.  The process will take a couple of hours, so it will be a while before we have much to update.  The surgeon told us he would send word at some point to the nurses in the NICU to let us know how everything is progressing, so we might have something for you in about an hour or so.  

Dr. Saenz, the on-call surgeon and our original surgeon called us and explained that he was of the opinion it would be better to do it today when they have openings, a team ready, and while the siloh is still working as it's supposed to.  Karsie looked well when we saw her and since there's really no benefit to waiting until Tuesday (actually it seemed that it might have been a setback) we all decided it would be best to do it today.  

It sounds like there is not going to be much fidgeting with the organs and they are just going to be putting the patch over them.  

We appreciate the prayer given the short notice, and we ask that if you think of someone that might not know and be interested to let them know.  Thank you so much.  Talk to you soon...

Prayer Needed at 2:00

Change of plans. The surgeon just called and said he thinks it would be best to have surgery today instead of waiting until Tuesday. It doesn't sound like it's an emergency, but his thought is since she's looking good now it's better to do it now instead of having her organs exposed for two more days.

She is scheduled for 2:00 today. We know it's short notice, but please pray for Karsie.

Change of Plans

For those of you waiting to hear how the squeezing went, so are we.  We went in this evening and it hadn't been done, but we could tell the siloh looked like it had been moved.  When we asked the nurse practitioner, she said that the on-call surgeon this weekend looked at it and decided against it.  We think he tried putting just a tiny bit in, but really decided against doing too much as it is such a small abdominal cavity.  At this point we are thinking that everything will be done at once when she goes into surgery early next week.  She will probably go in either late Monday or early Tuesday, but so far we have not been notified of a time.  

Family Time Before the Weekend Procedures (Graphic Pics)

Here We Go...

Today is Day 1 of a multiple day blitz on Karsie's situation.  We are getting ready to head off to the hospital to do our morning checkup.  At this point, the surgeon may or may not have come by to begin squeezing in her bowels, but at some point today, depending on his schedule, he will. This will end early next week (Monday or Tuesday) when she goes back in to patch her up with a Gore-Tex patch (we realized that gortex wasn't right when we looked it up...we're going back and fixing all of that for research sake).

Also, if you haven't noticed a slight change to our blog on the left, we have set up an email address for Karsie.  We have all been so blessed with the thoughts and prayers sent her way, but if some of you would like to send her a note or a prayer in writing you can send it to karsiegene@gmail.com.  We figure it would be really neat in a few years to have her sit down and really understand how much she has been lifted up by reading little notes to her specifically.  Michelle and I will not read them until she is much older or we need to print them. 

Much thanks...

A Few Corrections

Not much to report today except that she is still stable, which actually is a lot to report.  She is moving ever so slowly toward not needing the heavy duty ventilator, but all of that changes tomorrow.  She most likely will have some bowel squeezed in tomorrow.  That will go for a couple of days until they are ready to put a gortex patch on her.

The first correction is that they plan on surgery Monday now instead of Wednesday.  This gives them Saturday and Sunday to squeeze in the bowels.  Sounds a little sudden to me, but I trust they know what they're doing.  

The second correction is that on our update yesterday after the meeting, I must have misunderstood the blood pressure part.  She is apparently maintaining her blood pressure quite nicely on her own.  

We are also continuing to pray for her EEG test on Monday that will apparently happen the same day as her surgery now.  Big day for all of us.  We are assuming the EEG will be a little more scheduled while the surgery is just whenever they have time as it is not as an immediate of a need as her first one was.

More Dolling Up

NICU Meeting

This morning Michelle, Kevin, and Nana went to the hospital and found the surgeon within the vicinity.  We were able to get a quick meeting with him and someone from the NICU that had an idea of what Karsie's situation entailed.  We will probably have these about once a week, though since all three of us are constantly asking questions, we think much of it will be old news. However, today's was not.

Update from Surgeon:  Dr. Losasso started by saying there is good news and bad news.  The good news is that she is responding well to treatment.  She is being weaned off of the ventilator at a decent rate. Following that, her bowels are doing a little better.  We are close to being able to check that off of the prayer list as "answered".  The bad news (which we found out we already knew...relief) was that her abdominal cavity is so teeny tiny and her organs are not.  Organs growing inside the abdomen both keep the organs smaller and stretch out the cavity.  Because there was no restriction, her organs grew bigger than her cavity and her cavity didn't grow, so it's a double whammy.  All of which to say, he doesn't think he will be able to get everything in.  Normally, they want to start putting it all back in immediately and have it all in within 7-10 days.  We are on day 6, so the clock is ticking.

What this means:  The surgeons will start on Saturday, when they can, squeezing (like a tube of toothpaste) the intestines slowly back into the cavity.  This will help the liver, currently vertical, sit more horizontal on top of the bowel, which is where it should be.  The more "stuff" that goes in, the harder time Karsie will have breathing.  Since she has been without restriction on her lungs so far, she has had no obstacles to her breathing.  After Saturday, that changes. This "squeezing" procedure will go on a daily basis until they have to "bite the bullet" and just finish.  Meaning until it is not safe anymore for the organs to be in the siloh.  Once that is finished, assuming some miracle doesn't happen and they are able to close her up, they will get a Gore-Tex patch and sew it around the opening, over the exposed liver, and wait for the skin to grow around it.  This will most likely take at least a couple of years to complete.  Fortunately, we will be able to take her home well before that growing process is complete.  I'm sure you can pick out the parts in that situation to pray for.  

NICU - As far as Karsie is doing as a whole, the nurse practitioner explained their timeline to us.  First of all, they will work with the surgeon explaining to them how the baby is responding to treatment and how or if she is ready for more "squeezing" to be done.  Their biggest goal at this point is weaning.  Karsie needs to be getting adequate oxygen (which she seems to be doing very nicely), she needs to be stabilizing her blood pressure (needs some work on that), she needs to have a nice heart rate (at times a little fast, but okay), and her blood gases need to be showing good signs (decent but not great.  Her CO2 levels tend to be a bit high and her PH levels fall slightly lower than normal, but not horrible).  Basically, once the patch is on and everything is inside the body, they want to see Karsie breathing on her own, eating on her own (through the mouth) and off of the meds helping her stabilize her vitals.  

As far as a timeline for taking her home goes, no medical worker wanted to comment on that as they only have one week worth of data to give any kind of trend, and it all is shot soon anyway when the organs start to go inside.  However, the social worker, based on other situations that have come in like this said that we're looking at anywhere from 4-8 months being in the NICU. She may surprise us and start really improving much more quickly, but she said that is about average.  So we are hoping for at least a nice little Christmas present and maybe a little Thanksgiving present if we're lucky.  The good news about that is we will be able to hold her and play with her much earlier than that, but until those important things like eating and breathing are being done without any help, Karsie will stay put.  

On a completely new direction, Karsie was moved in the NICU to a much more quiet spot.  The nurses thought that her high traffic spot was stressing her out a bit.  We are also going to be able to give her voice recordings of us for the nurses to play while we are not around.  

We're doing better than we were yesterday, but we're still very sad about all of this.  The meeting was mixed with hope, sadness, thankfulness, worrying, and a whole bunch of other emotions that go with trials like this.  We know Karsie's situation has been turned into a far reaching story, and we thank all of you that continue to keep her in your prayers.  

Pretty in Pink (3rd picture is graphic)

Our nurse found her a little ribbon to put on.  She needed a little feminine touch to go along with her wires and tubes and a big ol' sac of guts hanging above her.  
Not sure I approve of this, but I'm fulfilling a promise I made to a friend from work.  We'll get her straightened out later.
Sorry about the guts, but this is too good to pass up.  Three generations of women.  When Karsie comes home we will be able to have a five generation picture.