Quiet Times

After our encouraging news on Friday, it has been a bit quiet around here.  Michelle has been feeling Karsie quite frequently at night.  It seems as though she wakes up early, takes a long nap during the day, and then wakes up in time for dinner.  She's supposed to be around 6 inches long at this point in the pregnancy, so she's making her presence known.

We have scheduled another appointment with our regular doctor, Dr. Owens, a week from Tuesday.  We're not sure what exactly they are going to do, but hopefully we can get a sonogram to have a little more news to share with specifics.  

Breaking News...

We received a call from our doctor today around 10:00 that told us there is no evidence, at this early stage of the review, of any trisomies (third chromosome) in the amniotic fluid. In other words, it looks as though we have passed another huge hurdle.

What this means is that neither an extra chromosome or a missing chromosome was present in the test that they performed. Keep in mind that this is a preliminary test and there is a chance that other problems can come up when they are able to grow the chromosomes much more, but this is such outstanding news for the time being. The complete test will be available in a couple weeks or so.

While we are so very thankful for the prayers that you all have lifted up, we ask that you continue to pray hard for those tests. We can't even begin to thank all of you for your diligence. We continue to get word from people we have never even met that have Karsie in their daily prayers. We are truly blessed. From the bottom or our hearts, thank you.

P.S. IT'S A GIRL!!! Confirmed.

Kevin: I also want to thank my unnamed student who offered me all of the money they had to help pay for my baby's surgery. If you ever read this just know that I will never forget your wonderful offer and that might have been the sweetest thing I have ever heard. Kids can teach us a lot about what's important in life.

Things We Don't Need to Worry About (Part I)

I'm sure that at some point in every parent's life there comes a point where the husband and wife discuss how the hospital will make sure that they don't mix up their baby with another baby. We have talked about this small possibility at times and have even brought up the idea of bringing a sharpie to mark our kid just after birth so there is no mix up (which was a complete joke for those of you who may have thought that was serious).

Well, Karsie will now have something that's a little easier to identify than a mark with a sharpie. We no longer have to worry about mixing up our kid with another.

...and that's this episode of "Things We Don't Need to Worry About Anymore."

Amnio Pain

As expected, Michelle has been pretty sore all day from the amniocentesis done yesterday.  Add on the extremely intense round ligament pain and it's been a pretty painful couple of days.  We are both anxiously awaiting the results from the test which should be coming in the next couple of days.  

Amniocentesis

We just got back from the amniocentesis today.  Unfortunately, we do not really have any news to report regarding Karsie's well-being.  Both the genetic counselor and the doctor really just wanted to reserve answering questions until we find out the results from the tests.  However, we were able to get a couple of older questions answered:

Regarding the ovaries and uterus (still assuming girl), the omphalocele will most likely not contain the ovaries and uterus.  

If this is a chromosomal abnormality, our chances of this continuing are quite low, according to the genetic counselor.  

Statistics:  25% of omphaloceles are genetically related.  2/3 of omphaloceles are either genetically related or have other problems associated with it.  This means that there is a 1/3 chance that the omphalocele is the only problem we're dealing with.  That's a lower statistic than we want, but the good news is most of the "other" non-genetic problems deal with the heart, which we are almost certain is good.  

The amniocentesis went well.  It did not take as long as we thought either.  We ordered two tests.  There is one test that is about 100% accurate that will take about 2-3 weeks to get results back.  The second test is not quite 100% accurate but is still extremely accurate that we will receive in a couple of days.  When we get that result we will post it.  

Thanks for the thoughts and prayers.

Questions Forum 3-23-09

Once again, if there's anything you would like answered or questions you have let us know.  It will help us on what to ask for later appointments.  If we know the answer we will let you know on an answer forum later on.  

Pray Tomorrow

Michelle and Kevin request your prayers tomorrow around 9:40-12:00.  Thank you for all you all have done so far.  

We also request prayer for our patience as we will probably not know any results for a while.  But we will have some information tomorrow.  

Journal Update 3-22-09: Omphalocele vs. Body

Keep in mind this is a bit of an estimation based on the size of a normal baby at the time of our ultrasound on the 13th.  

On that day the doctor said that the omphalocele was about 3.5 cm.  The size of an average baby at that time is about 13 cm.  This might not be the most accurate at this time, but it gives us a rough starting point to measuring the growth of the omphalocele compared to the growth of Karsie.  Starting measurement is a little less than 1/3 of the size of the rest of her body.   

Journal Update 3-21-09: Our Active Child

Karsie seemed to be doing backflips and somersaults yesterday.  She likes to sit right up against the front of Michelle's stomach so it has been very easy to feel her.  Even Kevin, who is not the best at feeling her, was able to.  Michelle says it feels like popcorn popping.  

Kevin also thinks she will be a swimmer when she grows up as she likes to move her arms above her head (but we could only see that in sonograms).  

Right now is kind of a lull for us.  We are still in a euphoric state since our good news on Thursday, but also feeling more and more nervous about our appointment Tuesday, even though we may not get any news then.  

UCLA

Building 200 - Part of the UCLA Medical Center

First of all, thank you to everyone praying all day for our appointment. We are blessed to have such dedicated prayer warriors as friends.

We met today with a fetal heart specialist to find out if the heart is functioning normally. If there were some abnormalities with the heart, then that would signal a likely chromosomal problem. If it registers normal that doesn't mean we are out of the genetic woods yet, but it rules out many severe problems associated.

Dr. Tabibian, the doctor we saw, was extremely patient as she tried to find Karsie's heart valves. This proved to be a problem. First of all, Karsie is still very young and the heart is very complex, so not everything is big enough yet to see clearly with a sonogram. Second of all, we have quite the active baby who also had the hiccups, so there were many times Dr. Tabibian had to stop, take a breath, and try again. However, she was able to get some fairly good reads despite Karsie's size and all of the movement.

Her direct quote: "At this point I am 99% sure that everything in the baby's heart is functioning normally. However, if you were my sister I would recommend that you come back after the heart has grown some more and make sure we can see all of the smaller vessels. But I'm pretty sure everything is fine."

We are very assured with her statistic because she was a very meticulous doctor. She looked at every valve and ventricle over and over and in different sizes to make sure everything was fine. There were, in fact, four chambers working perfectly. The blood was going where it should go and every valve was where it should be. Therefore, it looks as though Karsie has a good heart and that rules out a few genetic problems.

Other genetic problems were also ruled out today as we were able to clearly see straight fingers on each hand (in some other chromosomal problems the baby makes a fist or has crossed fingers), and we were able to see the liver clearly in the omphalocele, which is a good sign believe it or not. So far, so good, but we will go in to the doctor's here in Bakersfield on Tuesday to do a full genetic test on Karsie.

After all was done we were able to see another shot of the privates (in 12 years we will need to apologize to our daughter for this: sorry Karsie) and it still confirms girl. And, we were able to see a wonderful head shot with her scratching her head with two fingers. She's a head toucher. We will try to put those up soon, but the pictures didn't come out as well as the sonogram showed us.

Oddest question/conversation of the day:

Dr. Tabibian: Are you two related?
Michelle: Yes, he's my husband.
Dr. Tabibian: No, I mean other than that?
Michelle: Oh. No.
Dr. Tabibian: I'm sorry. I have to ask.

Answers from Question Forum 3-16-09

Q:  Have all of the organs been developed that karsie will eventually have?  (ovaries, uterus, etc.) and are they potentially going to be in the sack?

A:  We're not exactly sure what is in the sack at this point other than the liver, stomach, and bowels.  We should find out more in the next couple of weeks, possibly Thursday.  Ovaries and uterus are usually lower than the omphalocele, but it's a question we will ask.  Thank you.

Q:  Other than looking for 4 chambers what will the doctors be looking for on Thursday at UCLA?

A:  We honestly have no idea.  We know they are going to do an ECG on the sonogram and want to know if there are any cardiovascular problems.  Here's a link to a web MD site http://emedicine.medscape.com/article/404182-overview that if you scroll down will give a little blurb on the cardio problems that can occur with an omphalocele.  Thursday's appointment is meant to rule those possibilities out.  We will post a more thorough response to this question after we find out more.  Thank you.

Q:  What is the possibility of chromosomal abnormalities should you decide to have future children?

A:  At this time we have been told that even with chromosomal abnormalities it's a 1 in 100 possibility that an omphalocele occurs, which is obviously lower than we would want but not low enough to discourage us, at this point, from having future children (assuming there aren't other problems).  We meet with a genetic counselor next Tuesday and they will talk to us more about our situation.  Thank you for the question. 

Q:  When will you get the results of the Thursday tests and how long are the tests?

A:  We're not sure how long the tests take because we're not sure how many they are doing.  We know they are doing a ECG which, if it's anything like an adult ECG, isn't terribly long, but if they do more tests they might be longer.  We might get the results as early as immediately if the doctor is present.  If not, we might be getting a phone call in the following days.  We'll keep you posted.  Thank you for the question.

Again, thank you for the questions.  They really do help.  We have talked about all of these and know a little bit more of what to ask when we go into the appointments, so you have helped us out greatly by giving us somewhere to start.  

If anyone has more questions before Monday feel free to ask away on the previous blog (Questions Forum 3-16-09).  We'll put up a new one every week so you don't have to keep scrolling down to find it.  

Thank you guys so much,

K&M&K

One Month to Four Months

Sonogram Photos

Karsie's head and some of her spine plus a bum shot.

Bum Shot:  Imagine sitting on a huge camera.  That is what you're seeing.  A reverse bird's-eye view if you will.  A bug's view.

Head Shot:  Head is to the left, spine is coming out of it.  Not sure what else.

Questions Forum 3-16-09

We have decided (with the inspiration of Kevin's mom) to post a weekly forum for questions regarding anything about this process.  This will help with questions that we have ourselves.  If we cannot answer the question, then it's a question we need to ask a doctor at some point.  If we can, we will answer what we know.  Please know that we do not view questions as invasive.  If so, we would not have set up this blog.  So do not feel awkward or bad about posting one.  It will help us greatly. To post a question just click "comments" and post.  You may post anonymous or post your name if you wish. At this point our goal is to have these answered by Wednesday afternoon.  Note:  Our next Dr. appointment is this Thursday at UCLA to check Karsie's heart.

(p.s. you may want to check "omphalocele" on the Previous Posts page if you have not already.  Warning:  it's a long read)

Thanks. 

Comments

Our mistake.  You no longer have to sign up to comment.  Sorry for the confusion.  Just type your comment, if you wish to comment, on "comments" and scroll down the "comment as" bar choosing anonymous or "name/url" and type in your name.  

Posted By Whom????

We do realize that all of the posts say posted by Karsie Gene. I'm sure no one thinks that the baby has already learned how to use the Internet from inside the womb (although kids are quick these days), but it is a funny sight. Kevin thought when he signed up that the username would also be the blog name. We will try to straighten that out, but until then that's us.

Today

While this blog might not be able to give a "daily" account of our situation, we are able to start that way.  We are having a very lazy day doing laundry and laying in bed.  We are feeling a little sorry for ourselves today.  Sometimes it's okay to be that way.

Michelle is experiencing some round ligament pain (perfectly normal), and Karsie is very active. Be careful!  Protect your sac!  

Thank You Royals

We both want to give a special thanks to our parents Carlos and Reva Royal who were here with us for much of this time.  We appreciate your love, support, and willingness to drop everything and just be here.    

Omphalocele (diagnosed 3-12-09)

We will do the best we can to explain what we are facing as we know it now.  We will be learning much more about this abnormality in the coming weeks, so our knowledge might change, but we will continue to update as it happens.  Also, each condition is a little different, so Karsie's case will be unique.

An omphalocele is where many of the baby's organs grow outside of the body inside a "sac" created by the umbilical cord stretching.  The biology of this working correctly is amazing!  The organs develop/are created in the umbilical chord.  Around 10-11 weeks they move into the abdomen and grow into the body.  At some point during this process they rotate 270 degrees in the cord and then go into the abdomen.  Crazy!  At some point Karsie's organs did not go through this process and did not make it back into the abdomen.  Therefore they are growing in the cord.  

The good news about this is that the organs are safe in the sac for now and probably will be until, hopefully, the final process which will be putting everything back inside the body.  The bad news about this abnormality is that it is often associated with genetic problems, almost all of which are fatal.  Therefore, the next few weeks we are going to be figuring out what we're dealing with.  We will be doing many tests to determine if this is genetic or just a freak incident.  

If this is not genetic, then this is a 1 in 10,000 abnormality.  If it is genetic, then it is still a 1 in 100 possibility that this happens.  

Karsie's situation:  On the 12th, our appointment with the doctor from UCLA showed us a little more clearly what we are looking at.  While we saw more, there are still many, many unknowns.  It looks as though Karsie's stomach, liver, and intestines are inside the umbilical "sac."  It looked as though her bladder is where it should be and other vitals, such as heart and lungs are where they should be and functioning normally.  As we say that we are very aware that the possibility exists that we are wrong about that, but for now we are staying positive.  All of the limbs are looking good, and there are no obvious signs of genetic abnormalities as of yet, which is a good sign.  

Next Steps:  We are going to UCLA on Thursday, March 19 to check out the heart a little more closely.  They will be looking for the heart to have four chambers as well as other abnormalities that we do not yet know of.  Following that appointment we will be going in on Tuesday, March 24 to get tested for genetic problems and will meet with a genetic counselor to understand what we are looking at if this happens to be bad news (genetic problems).  We know at this point Michelle will be getting a amniosenticis (where they take a sample from inside the uterus to get amniotic fluid).  They will then grow the chromosomes for a couple of weeks to determine whether or not there are problems.  We will not get word from that for about a month from today.  Those results determine everything we will be planning for.  Please pray very hard that this is not genetic as it will be fatal.

Karsie's First Year:  While we are praying very hard that Karsie will make it to birth, afterwards will be very trying as well.  We're fairly certain that Michelle will have to have a C-section so we do not risk damaging the sac that is protecting Karsie's organs.  We then have some options that we will be weighing for the next 5 months with each other and our doctors.  

There are two common ways to deal with an omphalocele (assuming no other genetic problems).  One is a silo, the other is called paint and wait.  A silo option will require surgery immediately after birth.  The doctors will stretch out the skin and create a plastic container to hold the organs until the skin and muscles are ready to hold them (which will require another surgery later).  The paint and wait option will require no surgery immediately assuming there is no damage to the umbilical sac.  If all is good we will be given a burn cream to apply to Karsie's sac to make it extremely tough.  We then will wait for the skin to naturally cover the sac as it grows.  Once Karsie is ready we will go in for surgery to put the organs in.  This can take up to a year if there are no complications.  

Miracle:  There is still a very small chance that Karsie's organs will begin to file into her belly on their own as the pregnancy progresses, leaving little to no organs outside by the time she is ready for birth.  At this point the omphalocele is extremely big and it doesn't look like this will be the case, but we will be praying for a little miracle still.

The News...(3-11-09)

If you've ever been kicked in the stomach until you felt like you were going to throw up, that is about the best we can describe the feeling we had when our doctor told us the news.  We had gone from pure elation to complete shock and almost a dream-like disbelief in a matter of seconds.

Our doctor, who we also love, Dr. Owens came into the room and right away told us that Gennifer found an abnormality that will need to be followed up right away.  He assured us that it was nothing we did or anything that could have been helped, but nevertheless we needed to see a specialist to figure out exactly what we are looking at.  His exact words were:

"We'll still have to find out what we're looking at.  This can either be something that's not that big of a deal or it can be something potentially very very serious."

His best guess at what we were looking at was either a Gastroscesis or an Omphalocele.  After scheduling an appointment the very next day (due to diligent phone calling from Gennifer) with a specialist from UCLA we looked up the two online.  Here's the short version of both:

Gastroscesis:  This is an abnormality where the bowels grow and develop outside of the body but are not protected by anything.  The are floating around outside the baby's body inside the womb.

Omphalocele:  This is an abnormality where the organs grow outside the body but are protected by the umbilical cord that has stretched to the point of making a little sack and holds the organs.  

It's a Girl!...I think... (3-11-09)

On Wednesday, March 11, 2009 we decided to "peek" a little early to find out the gender of our new baby.  We had a lot of people very anxious to hear our news so they (especially the soon-to-be grandparents) could start spoiling the new baby early by purchasing baby clothes to fit the gender.  

Gennifer, our technician (who we absolutely love...thank you Gennifer, we totally understand) initially told us that it was a boy.  Michelle guessed first before Gennifer told us as she saw a little "bump" in the "junk" area, which usually means a boy.  Kevin was clueless to what he was looking at.  After looking at the baby for a while Gennifer said that she wanted to get a closer look because there were some things that made her think it was a girl.  

She obviously could not confirm any gender as technicians are not allowed but Gennifer said her best guess would be a girl and the "bump" was just swollen girl parts.  

So, for now, we have a little girl (this educated guess was later reinforced on our next appointment.  So, we understand that our blog name might change a little later, but we are going with the two tech's guesses).    

Introducing Karsie's Blog

To all friends and family:

This blog is intended to keep all of you posted on information, updates, and thoughts from the Turner family as we work to bring Karsie into this world.  To all who have been supportive through prayer, kind words, and hugs we both want to say "Thank you" from the bottom of our hearts.  This has been and will continue to be a very trying time for us and every act of love from you has given us inspiration and strength.  

As we get updates and are ready to share we will post as much information as we can.  We will also use this as a mini-journal for the future.  Maybe it will help other families as they go through the same process we will go through.  

We are very aware that this process might not end well, but we know that God is in control and we trust that God will bring us through this.  Regardless of the outcome we still feel very blessed to have each other and our family/friends to help us along.  

Thank you again for everything.  We love you all!

Kevin, Michelle, and Karsie