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.

We Feel Blue

Today was the day we made the decision to leave the hospital.  If you were not here to see the NICU waiting room, we had basically made a little campground in a corner and that was our residence for about 5 days.  Snacks, games, sleeping bags, linens, books, more laptops than people at times, clothes, you name it.  However, since Karsie has been looking so well, we thought today would be the best day to wean ourselves off of staying 24/7.  However, it is turning out to be much, much harder than we thought.  Our little girl is all alone without her mommy and daddy right across the wall, and even though we can rationalize that she is in the best place with the best people helping her, it's devastating us.  We miss her.  

On a positive note, Karsie has been looking better and better.  Again, we are still so very far from over, but she has fought so hard to get better so she can come home.  Her oxygen levels continue to improve, and her blood gases are staying well enough to either wean her or keep her the same.  Just before we left, she was as awake as we have seen her.  She was looking around and stared right at her parents.  Talk about temptation to stay another day.  It figures this was the one time that Kevin didn't have his camera.  She'll do it again and it will be on here immediately after.  

Continued prayers for the EEG test...

Status Update (7-22)

Karsie had another good night. She has done well enough to merit more weaning off the ventilator power, so as far as oxygen percentage goes, she is almost to the goal. The goal is about 21%, which is breathing room temperature air, and she is at about 28%. So, 8% more to go. This will go back up any time the surgeon does something to her organs as it will make it a tad more difficult to breath, but seeing as we started at 100% she's doing awesome.

Everything else seems to be status quo. He blood gases came back good enough for them to ween last night, and they just got results back this morning from another check and it came back as being good. Therefore, she handled the ween well. She seems to be getting stronger and stronger with her breathing. Now we need to continue praying for her EEG test that is coming up. We won't lie. We are absolutely terrified about that test. No matter what the indicators say and what our reasoning and optimism tells us, we are very scared for that test. And we have to wait for it. We continue to ask for prayer on those test results.

Michelle is continuing to do well. She was discharged last night and spent the night at home. She is still pretty sore and very emotional given the circumstances and normal pregnancy horomones, but she is still so strong. We continue to thank God for her eventless surgery and keeping her safe during this time.

Very Specific Prayer Request

I wanted to get this down so we had as much time to pray for this as possible. In one week Karsie is going to have another EEG test. We need to pray that those tests come back normal. If they do, it means that Karsie's brain has been able to fix itself. If not, it means that it suffered a hit that is probably irreversible. This could be as serious as cerebral palsy or mental retardation caused by her traumatic entry into this world.

The hopeful news is that the first week in a preemie's life, the EEG is a bit unreliable because of the healing it needs to do anyway. Therefore, the neurologist thinks it's possible it was just a bum test. Also, all of her organs are healthy (she's peeing...remember when we were excited about that...this is why) and she is not having seizures. The neurologist said that he is cautiously optomistic that the next test will be a bit better, but we still ask for some serious prayer for this specifically (along with all the other things we have asked you to pray for). We continue to be very appreciative of your faithfulness.

Another Prayer Request

Karsie just had her bandages changed. She did great. This means she is getting a bit more stable. Also, Dr. Losasso is very happy with the way things are looking. It was repeated to me again that this was going to be a multiple month process, but her vitals are still looking good. We are having a meeting with our doctors today to go over some specifics of Karsie's progression, but one thing that is a newer development is worth adding the the prayer checklist.

Along with praying for her to do well on the ventilator, her blood pressure, and her brain tests, we need to pray for her bowel as well. It looked slightly discolored today. This could be a number of things, many of which not serious at all, but it is being watched. The surgeon didn't seem to think it was a huge deal immediately, but he definitely is wanting to watch it. He thought maybe the angle at which the siloh was hung needed to be changed. Anyway, something new to add on to the list. Eventually, we hope to start taking things off the list, but we'll probably add more before we start to eliminate.

Morning Update (7-21)

Last night seemed to be another good night. She does well at night. Her oxygen levels have continued to look excellent to the point that they have weened her down into the 30's. For a reference, she was in the 90-100 range the first night and a little the second day. I may be completely wrong, but I think that's a percentage of her own oxygen intake. In other words she is getting about 70% of her oxygen by herself now that it is in the 30's.

In our blitz of picture posting I realized that there hasn't been a ton of explanation of things that have been happening, so I will try to post all of the significant happenings going on currently.

EEG results - I am still waiting for the results of the abnormal EEG. We cheated yesterday and had another doctor find out what was read and what that means so we didn't have to wait for the results and possibly a doctor that has the personality of a lizard. When they measured her brain it looked like she had periods of high activity followed by periods of lower than normal activity. The doctor we talked to told us that he would have been absolutely shocked if that test came back normal based on her first hour of life. While the possibility still exists she could have very serious brain damage, some signs look good that she may just be showing us that her brain is still in recovery right now. One of those signs is her other organ functions. Remember when I told you a couple of days ago that she peed and we are happy about that? This means her kidneys are functioning. This is important because when there is major blood loss to a person, the body does an amazing job of keeping vital organs happy. The body will start to shut down organs like kidneys and bowels and such to keep the heart and the brain still flowing with blood. Since her kidneys are still functioning, we hope that means her blood loss wasn't significant enough to her brain to begin the shutting down process. However, the actual test means that there is an irregular brain pattern now. They will continue to monitor her activity for a while to see if that continues for a longer period of time. The doctor told us that this initial test is not as important as the tests they will do in the next few weeks. If those start coming back the same way, then there is cause for more concern.

Michelle seems to be getting discharged today. She has done amazingly well and is now starting to do some more walking. We are waiting for the doctor to make the final word.

We are also waiting on the surgeon to see if they will change the bandages around Bob today. Karsie is getting pretty puffy and the initial bandages put on her incision are getting pretty tight. The surgeon wanted to wait for a more stable baby to change them, so we're waiting on that. He came in last night and was probably going to do so, but he must have gotten called in to surgery and hasn't been back.

When we were talking with the doctor about the EEG, he also gave us the full story of Karsie's birth. He was the same doctor that came in and told us that they were able to get Karsie stable. We understand the situation very similar to what actually happened. However, what makes things interesting is that at birth, her stats were good. The assessment that was given right away was good. She turned pink. She cried. Things looked real good except for the ruptured omphalocele, but that wasn't the concerning part. The only thing that was not posted earlier was that her cord ruptured and actually shredded, so the bleeding was coming from there. The good news about this was that at no point was her heart rate low or stopped and there was still some blood flow throughout. This makes us hope that there may not have been as extensive a lack of blood to the brain as initially thought. We'll just have to wait (painfully) and see.

Karsie Holds Kevin's Hand

Grandpa Gets in Too

Karsie's blood pressure went down when Grandpa prayed with her. We know who she's going to when she wants something.

Test Results

Two good, one concerning.

They did a brain ultrasound (measuring blood in the brain), an EEG (measures seizures and brainwaves), and an echo cardiogram (heart ultrasound) today. Both of the ultrasounds came back basically normal. There is no bleeding in the brain and her heart looks fairly normal. (I say fairly because the technician said that they didn't see anything abnormal, but the doctor hasn't confirmed it yet...but I trust the techs).

The EEG came back abnormal. Unfortunately that's all the information that was given to me in a sit-down meeting behind closed doors (which was terrifying) and she tried to explain it, but it was basically prefaced by "The neurologist will explain more what his report 'abnormal' meant." So, that's just enough information to have us worry until we talk to the neurologist.

The good news is that they are not seeing Karsie seize at all, so it is very mild if she is, and while the report said abnormal they did not order any immediate medicine for her, so it may be something that will hopefully correct itself in time. This is not the best news obviously, but we can't say we're surprised given she was lacking sufficient blood to her brain her first part of life. So again, if some of you need specific areas to pray for, pray that whatever is happening to her brain or happened to her brain is not going to be long term and will correct itself rather quickly.

Nana Gets to See Karsie

Thank you Dr. Knight. Enough said.

Update (7-20)

Things are still going fairly well. Karsie had a busy morning this morning as she had two tests on her brain (to measure her brain...not actually on it), they did a thorough assessment where they touch her and poke her, and she got a little mad, but she is still stable. They are continually weening her off of the ventilator and she is doing some breathing on her own.

One thing that I don't remember if I mentioned was that the day she was delivered her lung collapsed so a chest tube was inserted. They are probably going to remove that today as they have already clamped it off and she is doing fine without it.

She is getting a bit puffy because of her surgery recovery, and so her bandages around Bob are starting to restrict her body a bit, so a little later today the surgeon will probably redress those, which is a pretty delicate situation.

Boring news is good news so far. She is starting to really move since her paralysis medicine has been taken off, and obviously her eyes are starting to open and close a bit. We will update more when we know more.

Karsie Opens Her Eyes (sorry it's sideways)

Surgeon Update

Kevin: I was in the NICU visiting with Karsie and happened to be there when the surgeon was doing rounds. (I am in such awe of what he does and did for Karsie. I firmly believe God used Dr. Losasso to make a miracle just keeping Karsie alive after all of that trauma). He did a quick look over Karsie's organs and vitals and he said that her liver looks "perfect" and her bowels look excellent as well. He said they're doing as good as he would expect. He said that he probably won't do anything until she is a bit more stable. He wants to see that Karsie is off the high intensity ventilator and moved to a more standard ventilator plus her off of medication to regulate her blood pressure. Once those two things are looking good he will try to start working the organs back into the body, starting with the liver, which is the most important to get in at this point.

So, if you're like me and you need some specific things to pray for, in the next few days pray that Karsie's lungs start to strengthen to the point of being able to move to a standard ventilator, and that she starts to regulate her own blood pressure w/o medication.

Karsie Had a Good Night (Graphic Pic Under Text)

Kevin was woken up by Ruth this morning, our favorite nurse (although they are all our favorite at this point), and was told that Karsie had a really good night and that all of her vitals are looking stable. We're hoping that this remains the case and that she gets real strong real fast because it won't be too long before the surgeon won't want to wait any longer to put the liver back into the body, which will be another round of very scary times (not that we're out of those now).

Michelle was able to see her twice yesterday and was able to hold her hand. She had a hard time yesterday, but she is so strong and knows that the best thing she can do for Karsie right now is to take care of herself and heal. She will be able to see her a few times today too as she is healing quite nicely (but painfully).

Update

Karsie is still stable. They are currently putting in a central line to get medicine and nourishment much more quickly. I should be getting word about that soon.

Earlier today they did a sonogram on the brain to see if there was any bleeding. Often with premature babies there is a high risk of that, but there was none. Her brain looks normal for now. We will still need to test for other problems, but we're ruling out a lot right away.

Michelle's First Time Seeing Karsie (Graphic Pics)

Pictures (WARNING...graphic pictures after the warning signs)

I was lucky to see her eyes open because she was just coming out of the medicine that they want her on so she doesn't move too much, but they said I should take a quick picture w/ her eyes open.
The liquid around her eyes is medicine they put there to help them with the low activity they are getting in the NICU.


The siloh is under the towels. This is the first picture I got. They later removed it when I told them I could handle the blood.
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What Happened

Delivery: As far as we can tell the problems happened here. We have not had this explained to us in great detail and officially, but this is how we understand it. Michelle did amazing through the surgery, but there were some abnormalities/complications with the delivery of Karsie. When they were pulling Karsie out her omphalocele sac was stuck to the placenta, so it tore quite a lot and it ruptured the sac which was protecting Karsie's organs. In doing this all of the organs became exposed and suffered severe trauma both on the way out and as they were trying to stabilize her. The liver appears to be the biggest hit organ, which is the most sensitive organ. (A quick word to our friends with omphalocele babies that read this blog, all of the doctors said that this condition is very rare. The placenta, during birth, naturally lets go of everything and if the sac ruptures it almost always happens in utero. Our doctor immediately let us know that it happened and that he had never seen that before. This is not something to be concerned about for your baby. But if you could pray for ours since it did happen to us, we would be forever grateful).

Thank goodness both Reva and I were able to be with Michelle during this process. As soon as Michelle's c-section was complete they moved her into a temporary recovery "room" (with vomiting patients in the "room" next to her). I was told from our perinatologist (the doctor in charge of Michelle and the baby in utero) that things weren't looking good and there were some major complications, but that our neonatologist (the doctor in charge of stabilizing Karsie) would come and talk with us as soon as he could. Reva and I went into the room and tried to gently tell that to Michelle and a short time afterward our neonatologist came in and explained the situation.

He said that there was so much trauma to Karsie that he was doubtful she was going to make it. He explained some of the things I have said already, but told us that she was bleeding so much that they could not stop it. Not only could they not stop it they didn't even know where it was coming from. He said that there was probably no way she would make it. (Obviously we remember things a certain way under a lot of stress, so that might not be exactly as he said it but that's how I remember it. However, it was not looking good).

Michelle, Reva, and I tried to mentally prepare for the bad news we were sure was going to come at any moment. This is probably the worst time to have to explain this to a new mom as all of the hormones are working overtime, but Michelle did okay. We were shortly visited by another neonatologist that said that thankfully they were able to stop the bleeding at this point and barely stabilized her, but she had significant blood loss and her blood pressure was so low she spent an extensive amount of time without sufficient oxygen to the brain. So, as good as things may look soon, we will always be looking for signs of damage. The hopeful news about that is that baby's brains (as explained to me by her current nurse) have incredible stamina and are quite a bit different than adult brains as they arrive ready to encounter trauma. The hope is that the trauma encountered is not significant. They said they rushed her to Children's Hospital and they were able to get a transfusion done, so she was, for the moment stable.

We separated at that moment and Reva went with Michelle to move to a private room, and I went with Kelli and Carlos to Children's hospital accompanied by a nurse. I was put into a consult room and had to sign a bunch of papers giving them permission to basically do what they already did, but permission to continue to do some things and then permission to have the surgery. Both the anesthesiologist and the surgeon came and talked to me and explained her condition was extremely delicate and she is very, very sick. He took her into surgery and about 3-4 hours later we were given the word that she was going to be brought back to the NICU, which was uplifting news to us. At this point I had Kelli, Dave, and Carlos with me, which without them I'm not sure how I would have made it waiting that long. We saw her wheeled back into the NICU, which we have video of, and we had a small conversation with the surgeon that went like this:

Carlos: It's just encouraging to us seeing her move from surgery to here.

Surgeon: I would say it's a miracle.

He told us later everything that happened in the surgery. Basically, the liver was still bleeding. The trauma had hurt a lot of the blood vessels that travel from the liver to the heart and many of them were stuck. He was able to fix that (amazing!) and stop the bleeding. He said that pretty much every organ was outside the body, heart and lungs being the exception, and so he couldn't put anything back in because she is so small. We think he was able to get the stomach and bladder (if it was out) back in. We know this because she peed last night, which is a great sign. We are still waiting for more pee as she hasn't done it in a while, but we know that those organs are working for the time being. Currently, her organs are hanging from a sac over her and sitting on her abdomen, which gravity is pushing them in so very slowly. When we post pictures, if you can handle it, you will be able to see this sac.

We have been prepared, by the doctors, that this process could take a very long time. We're looking at another pretty major surgery in a couple of days to put the liver back in the body because that is the most crucial organ outside. If they can't get everything sewed up in a couple of weeks, we will probably be looking at a multiple month, even year process to get things back in.

I'm about to go back in to see her as the shift change has happened and I can go in (they only kick out parents from 6:30-8:00 when the shift change happens). If I didn't cover a question that you have feel free to ask. If we don't feel like it, we won't answer it (hope you understand) but for now it keeps our mind doing something other than worry. Thank you for the continued prayer while being in the dark for so long. We'll update as soon as we can.

-Kevin

Morning Update

No news is now wonderful news. Karsie stayed stable throughout the night. Kevin walked in about an hour ago to see her and she had her eyes open. They are trying to keep her as still as possible so she doesn't damage her incision, but it was cute to see if only for a minute. The nurses are so wonderful here and understand that we have no idea what's going on with her.

Our nurse last night, and until about an hour ago, was named Ruth. She was so amazing at updating Kevin on every detail of Karsie's stabilizing process from what looks good to what they are concerned with. So far it looks like everything that is cautious for now is something they can fix. There are always about 4 nurses around her 24 hours a day. Kevin loves the times when he sees only one or two as it doesn't accelerate his anxiety.

Pictures will be posted as soon as Michelle has had a chance to see them first. We're having to do a lot of transferring being in two different hospitals and her still not getting to see her baby. We just got word that she may get to see her this morning if she checks out as being okay. We definitely don't want her injuring herself trying to get down here. Thank you so much for all of the prayers last night and continuous. It has been both comforting and helpful. We are still aggressively praying for a miracle.

Karsie's out of Surgery

Kevin was able to see Karsie about a half hour after surgery and for the time being she is stable. She has been through so much trauma in the past 6 hrs or so that it's a miacle she's still alive. We will explain more about that tomorrow, but for now we need our rest. We have some pictures soon to come too, but not for the faint of heart.

surgical update

A hospital socialworker who is a helper for Michelle and me said one of her jobs is to update us on Karsie's progress, so she did that. It sounds like things are going okay in surgery. No excitement. We are hoping to have a full update in the next hour or so.

The Story

In case the last post was a bit cryptic, here's the story: when karsie was born her omphalocele sac ruptured and tore from the umbilical cord which craeted lots of blood loss that they were not able to stop. When we spread the word we had just been told that and that her survival was not likely.

Michelle and I at that point seriously prepared for the news that we had lost our daughter.

The doctors came back and told us that they were able to get her stable enough to transfer to childrens hospital and they were able to somehat stablize her to go into surgery. She is currently there and will be four a couple hours, but she is still very very sick. She lost a lot of blood and was without it to the brain for long enough time to be scary.

We are still in a very bad situation, but we continue to hope and pray. Michelle is doing well after her own surgery.

update

They have moved karsie's status from survival unlikely to stablizing. We are no where near out of the woods but it looks slightly better. In a bit of a dead zone now but we will post more info when there's time.

Delay...we will go in around 3:30. Waiting for the correct OR to be booked

We're Going In!

Happy Birthday Karsie:  July 17, 2009

Lungs are Mature!

They test in many different levels and only the highest set bar will show up this early that the lungs are mature.  

Translation:  The lungs are VERY mature!  We are a bit on cloud nine right now.  We're waiting for the doctor to see if we're going in soon.   

Update

We are very happy with the current plan that has been put into place by Dr. Dowling.  He came in and said that we basically have 3 options:

1.  Delivery - he was a bit tentative doing this because we do not yet know about the lungs and we definitely don't want another issue for Karsie to deal with other than the omphalocele.  If she was in active/stressful labor then this is the only option, but since she has calmed down then he said we might want to find out a few more things.

2.  Amniocentesis - This is the option that he prefers and so do we.  He is going to take some fluid out of the sac and test the lung maturity.  If she has mature lungs we will deliver today.  If she does not, then we will probably wait until we can't wait any more.  If they are not we will then wait until next week if we can (because that's when they can do another amnio) and they may be mature then (which will signal delivery).

3.  Wait - This is not anyone's optimal choice, but this was an option.  Not going to happen.

We are now going to have an amnio and will probably find out the results in 3-4 hours.  Sorry for the continued delay, but this will be so much less stressful to know that she has full maturity if we have to deliver today....we'll keep you posted.

Waiting.....

So the plan at this point was to give you some information a few hours ago.  Not so.  The doctor has not come in to talk to us yet and at this point we have a new doctor, but still aware of our situation.

Michelle's contractions slowed down considerably last night which makes us wonder if they will try to push it.  However, the medicine that is keeping Michelle's uterus happy is making Michelle not so happy.  We are fairly certain (without any console yet) that even if they decide to push it, it won't be too terribly long.  Michelle has moved from about a 3cm cervix on Wed. to being 1 cm dilated this morning.  While this can be a very slow process for most pregnancies, we are not wanting to get to that point.  We'll keep you posted when we find things out.

(While I was typing this the nurse came in and said our doc is on his way, and he wanted to make sure Michelle was not having any liquids, so it sounds like he's planning on a c-section to us...but we'll find out for sure soon).

Here We Go

Well, Karsie seems to be ready to go.  Our doctor has been ordering pretty heavy drugs to stop contractions and while they have slowed down a bit, they have definitely not stopped.  He came in on his rounds and told us that Karsie is trying to tell us that she's ready.  With the heavy dose of drugs Michelle is getting there should not be many contractions if at all, but Michelle is still regularly having them.  So here's the plan:

They will continue to monitor Michelle throughout the night.  The doctor will come in tomorrow to evaluate.  If she continues contracting, they will deliver Karsie tomorrow.  He said he is pretty sure that will be the case.  The other good part about doing this tomorrow is that we have a higher likelyhood of having our surgeon whereas if they wait and she comes during the weekend, the rush is much worse than having a planned date with planned teams ready to go.  

Therefore, unless something drastic happens tonight, we will have a daughter tomorrow. There's still a real outside shot that Michelle stops contracting and they push it a bit, but until that happens, we're making our plans now.  Thank you all for the continuous prayers sent our way.  It got us to about 35 weeks!  Now comes the scarier part!  Please continue to pray for good outcomes and recoveries during surgery and everything else.  We are being spoiled already, but that's what we do with prayer.

Finally, this will most likely be the last big information blog for a while.  Michelle will be recovering from surgery and Kevin will be following Karsie around until after surgery.  Kevin will have his blackberry with him, so we will be posting (hopefully) many shorter status updates right here as things unfold.  Much like twitter, but much better since it's a play-by-play birth.  Obviously Kevin can't do his fatherly duties while typing on the blackberry, so whenever the blackberry gets in the way of that, you may have to wait.  We will do our best to keep you up to date.  

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A special note to the love of my life - I have been so blessed to be your partner for 6 wonderful years.  I continue to be amazed at how much of a wonderful woman and a mother you have been are are now.  As we spend our last night together as a couple without children, I want to let you know how much I love you.  I know we are going to be great parents because of how great we are together.  I cannot wait to meet our little Karsie and start a new adventure with you.  You always have been and always will be the love of my life.      -Kevin 

Trying to Prolong Pregnancy

There's a reason we have not posted in a while.  Short story is that we're in the hospital again....most likely to stay this time.  

Long story:  Michelle started to show some signs of real labor a day or two ago.  We'll spare some of the gory details.  She also started to have contractions move from just tightening to mildly uncomfortable to fairly painful in a very short amount of time.  We waited it our for a while to see if they went away, and they did not.  

At 3:30 this morning we called it and came into the hospital.  Michelle was in actual labor and so they gave her a sonogram, upped her dose of medicine, and did some other invasive tests.  We found out that her cervix is still closed but much thinner than she was just a short while ago.  We want that to stay the same because Karsie is doing just fine.  She has an excellent heart rate, her movements are still plentiful, and she responds well to all the contractions.  It's Michelle's uterus that's causing all the problems.  

The on call doctor put her on a blitz of medicine to stop the contractions, but they don't seem to be stopping completely.  They still have somewhere to go as far as increasing her medicine and giving her multiple kinds of medicines, but while they haven't stopped they have slowed down greatly and she is contracting within the minimum guidelines.  

We have an ultimate goal of 38 weeks (which may be a small miracle at this point), a closer goal of 36 weeks, but our first goal is to get to Monday.  First of all that would make her 35 weeks, but that's also when our doctor comes back from vacation.  He should have been more considerate of our situation.  He can take his vacation any time after we give birth.  Also, we're pretty sure that our surgeon is mostly available at the beginning of the week.  

While we are at a good place now at almost 35 weeks, we still ask for prayer that Karsie stays put for a while longer.  We really want to get to 38 weeks now because we just heard back from an acquaintance in New York also w/ an omphalocele, and they just had their little baby at 38 weeks, and she got to go home in just over a week.  While we don't expect that to be our case, we are sure, and they are sure, that her being born at 38 weeks had a lot to do with her recovery.  News will follow when we know more...

7-13 Update

We're back!  Start the countdown...28 days left until we meet our daughter.  

Yesterday was a good day for us.  We were able to take a timeout from all of the stress and just enjoy each other for a whole day.  There was a drive, a nap, a foot massage, gift exchanges, dinner on the back porch with the puppies, and lots of loving stares to make the mushiest person sick to their stomach.  

Today we started our week 34 appointments.  We went in for our sonogram and everything still looks great!  Karsie wiggled a ton and showed off some good breathing, which makes us very happy.  Something new:  She smiled!  And stuck her tongue out, but the smile was in 4-D, so it was absolutely adorable.  Unfortunately we didn't get a good picture of that, but we did get some great shots in 4-D of her face.  We are convinced at this point that she has Michelle's lips and Kevin's nose.  

We are looking forward to next week when Dr. Cousins returns because he is here for the remainder of our pregnancy.  How dare he take a vacation now! 

34!!!!!!!!!!!!!

Kevin here.  Since I am up at this late hour I thought I would post right away the exciting news. For those of you that have been following along daily know that today is an extremely good day! Karsie turns 34 weeks gestationally today.  This is just the first goal of many from now on, but we can breath our first sigh of relief.  A while ago while I was in the hospital and had tons of time I decided to read all of our blogs from the beginning to the end.  While I don't think this is something a normal person would do on their own, if you do happen to do this it's so amazing to see everything that has happened for us and all the answered prayer that has followed us.  We have definitely been through a lot so far, but we have basically fought through every struggle so far.  If you feel like reading a quick post, read "Further Update" on May 22.  This will explain the importance of week 34.

Basically, this is the week that all of us have been shooting for.  Personally, I am still greedy and want to make it to at least 36 weeks, and ultimately 38, but 34 is awesome!  Happy gestational 34 Karsie!  I love you very much!

Update (7-10)

The great news for today is that there really isn't a whole lot of news!  News tends to be not in our favor lately, so not having any is a welcome treat.  Michelle and Karsie have been going to a monitoring station at our doctor's office 3 times a week, and each time Karsie has looked fantastic.  

Kevin dropped Michelle's insulin bottle the other day and because insulin is so unstable, it mixed and reacted with itself and ultimately made it unusable.  So, another trip to the Costco pharmacy was in order.

Our last post named a date for possible delivery for Karsie.  While we do not know for certain, it is very possible (and probably likely) that her delivery date will be pushed up a day (to the 10th) to accommodate both surgeon and perinatologist.  So, exactly one month from today Kevin and Michelle will have a little one (with a little extra).  We are very excited.  

In lieu of our 6th wedding anniversary on Sunday we will not post any updates.  We will be spending the day with each other as our last anniversary alone.  It has been such a wonderful 6 years!  Until next time.....  

August 11

We met with Dr. Saenz, our surgeon, today and he took us into his office to show us some pictures of omphaloceles that he has done. Based on our situation he showed us pictures and cases that would be close to what ours was like. It's not a pretty defect.

For the time being, our delivery date is August 11. We will double check with our perinatologist, Dr. Cousins, tomorrow and make sure he is available, but until things change or if Karsie comes early she will be born Tuesday, August 11.

Everything sounds very promising. He showed us a siloh, which is something that we may have to use if he can't get everything inside in one day. (although it sounds like if we can go a few more weeks he can get it in). The siloh looks like a big plastic bottle lining that covers the omphalocele until he can push more in.

The other outstanding news is that it doesn't sound like a very long time that Karsie will be at the Children's hospital NICU. It may be a shorter time she stays there until she is moved to Mary Birch's NICU, which is the unit that is open door and anyone can see her with our accompaniment.

Appointment Today (7-6)

Today was the first day that Karsie's movement got annoying.  We had an appointment at the Doctors' office to do a biophysical profile and a Non Stress Test.  Karsie's profile was good.  She measured pretty close to her gestational age (a little lower) and there is still no movement of fluid, so everything is still the same.

This time, Michelle was monitored to look at Karsie's reactions and heart rate.  While moving is always good, Karsie moved so much today that she didn't stay on the monitor long enough to get a good reading.  So what usually would take 10-15 minutes took over an hour.  But the overall news is that she looked great on the monitor.  

We came home after our appointment to take a quick nap and ended up sleeping for about 3 hours.  We were a little more tired than we thought.  Tomorrow we meet with our surgeon. Exciting stuff!

Done for Today!

Michelle went in to check her crazy uterus and we were out in an hour.  Karsie looked great and Michelle only had 2 contractions, so we are home for the day.  We have another appointment tomorrow at Dr. Cousins's office.  

Hospital Visit and Schedule for the Week

Today was interesting!  We went into the hospital at 9:00 to monitor Karsie and Michelle started to contract again.  We're pretty sure at this point that she contracts with anxiety.  After a short time of monitoring they stopped it and put us into a room so they could monitor easier. Dr. Dowling, our more conservative doctor in the group, ordered a vaginal ultrasound along with an abdominal ultrasound.  Karsie still looked good and nothing had really changed since he admitted us almost 2 weeks ago.  Then he looked to check Michelle's cervix to make sure that hadn't shortened.  It still measures 5 1/2 cm, which if you know anything about cervixes is huge.  That's great news!  He said she's still in the 90th percentile as far as length of cervix goes. Therefore, Michelle's contractions were the only thing concerning at the time.  Dowling also ordered a FFN, which is the test we had a month ago if you have been following our blog.  We were concerned that Karsie was not going to go into labor this week.  That came back negative, so Karsie will pretty much make it at least one to two more weeks (providing nothing is concerning enough for them to take her early).  Dowling finally ordered monitoring of Karsie and the contractions and made sure Michelle didn't have more than 6 an hour.  Michelle did have more than 6, so he let her do another to make sure everything was a fluke.  Thankfully it was!  We were able to get through the hour with 1 contraction, maybe 2.  

This week's schedule:

Sunday:  Go back in to get monitored at the hospital

Monday:  Monitoring at Dr. Cousins

Tuesday:  Meet with Dr. Saenz (surgeon)

Wednesday:  Monitoring at Dr. Cousins

Thursday:  Day off

Friday:  Monitoring at Dr. Cousins