Continuing On....

Well, another few weeks have come and gone.  We've celebrated birthdays for both boys and they each had their parties.  Ethan turned 2 and Caden turned 4, where has all the time gone?

Well, I'm now 34 weeks along and this little girl seems to be chugging right along.  The last few doctors appointments her heart rate has been somewhere between 60-63 beats, which I've very happy with.  If she can maintain this rate until we deliver then I think we are doing really good.  It's always funny to watch the sonographers and nurses when they see such a slow heart rate.  You can tell that they are trying not to panic but think we are crazy when we are excited about a heart rate of 60.  If they only knew how many doctors appointments we had been to and how familiar we were with this.  They now have me coming in twice a week for biophysical exams.  I've never had to do this before.   I asked my doctor the reasoning behind this and he said it something he has all his patients do.  So, now everyone in the office knows me by my first name.  I told the office clerk yesterday that I probably broke a record with as many doctor appointments I've been to, she laughed and agreed.  I've decided that our lives now and will for a long time revolve around doctors appointments.  If all goes well after this little girl is born then we will probably be flying to Texas every 3 months, for at least the first year,  to see the electrophysiologists that the boys both see.I am having some issues with my amniotic fluid levels.  I've never had an issue with this before.  I've been told not to try and be "supermom", which is hard, and drink a gallon of water a day.  I found an app on my iPhone that allows me to track my water intake and I literally drink a gallon a day, which means I'm up all night!
 
On another note, we have made the decision to come back to Texas to deliver this baby girl.  Since we know the routine and our family is there, we felt that having that support was the biggest thing when delivering this baby.  So, I'm scheduled for the morning of April 16th, which is about 2 weeks early.
In dealing with everything we have the past 5 years with our children some of our biggest support has come from our family and friends.  We've also had to rely on God more than we ever expected.  But, I feel so blessed that we've had all that support because I don't know how you would get through this without any of that.  I think what makes this time seem so much harder, is that we are so far away from those people who have given us so much love during these hard times.  However, God has placed some friends in my life out here in Nevada that have truly helped make things a little easier.  I never dreamed I would find such good friends so quickly.

I think this has been so much more emotional for me because I prayed so hard from the moment I found out I was pregnant that this little baby would not have this heart condition, and of course for a little girl.  I knew it would be a long shot since my odds were not good, but there's always a chance.  I struggled there for a couple months after we found the heart block just trying to understand why this had to happen again.  Isn't third time a charm?  Haven't we been through enough?  And you would know that as soon as those questions surfaced in my head and the anger set it, we visited a church and the message was about suffering.  While I was sitting there listening to this message in Romans 8, I felt like I was the only person in the auditorium with the pastor speaking directly to me.  It's funny how that seems to work out.  I think I cried the entire service.  That's still one area I tend to struggle with.  I question, "Why me?".  Yet I feel so blessed because I do have these beautiful children.

The Miracle Hearts

So yes, it has been since October since I last posted but I think after reading this post you will probably understand why.  This post is a little different then what I usually write about.  The past 4 months our family has dealt with some difficult challenges.  In dealing with this I have decided to look into starting either a website or new blog to help other parents that might be experiencing the same situations, so they can have a place to turn to for information and support.  So, here is the first portion of my story.

I have two beautiful boys which I call my miracle babies.  Both boys have a rare heart condition called compete AV heart block.  Caden was diagnosed when I was 21 weeks pregnant and Ethan was at 22 weeks.  So what is complete heart block?  Well I'm not a doctor but I can give you the best explanation from a mothers view.  Certain antibodies, that I have, cross the placenta and the first organ they attack is the heart.  These antibodies attack the hearts electrical system causing the top and bottom chambers not to communicate.  A normal heart has a built in pacemaker called the SA node which regulates the general rhythm of the heart.  In complete heart block that pacemaker doesn't work so the top chamber beats at a regular rhythm while the bottom beats at a much slower rhythm.  There is currently no cure for this.  The only treatment is to implant a pacemaker.  Caden doesn't have one but will have to have one at some point, but Ethan had a pacemaker put in when he was 9 months old.  I'll get to those stories later.

Since the doctors knew of the conditions of my boys they had been watching this baby girl very closely.  We started appointments at 15 weeks with a cardiologist trying to catch any sign of heart block before it appeared.  The week after Thanksgiving we went in for our weekly appointment and the heart rate was in the 70's with a 2-1 heart block.  They sent me to the hospital for a questionable treatment of an IVIG infusion, which is where they pump good antibodies into your body in hopes of reversing the heart block.  There is not very much information out there about this treatment but it was worth a shot.  Well, it didn't work and by morning this baby girl was in complete heart block with a heart rate of 60.  Now to put this in perspective, if you've ever had a baby and you've gone in for a sonogram or just heard your babies heart on the Doppler their heart rate ranged from anywhere from 120-140.  Now imagine if what you heard was half or less than half of that.  It's a very scary thing.  When the heart beats that slow it normally causes some distress on the actual heart muscle, causing the walls to be thicker and the heart to be slightly larger.  It can also cause some regurgitation, which is when there is some back flow when the heart pumps the blood from one chamber to the next.

So here we are, I'm at 30 weeks with a third child with heart block.  I've been told that I'm probably the only person to have 3 children with this condition.  Too bad no one wants to do a study on me!  This baby girl is currently doing the best she can.  We now see the doctors every other week, instead of every week.  She's growing and moving but with a slow heart rate.  She is now also considered one of my miracle babies.  I'm so thankful that God has blessed me with these children.  He is really truly amazing how he let these babies survive and fight with such a slow heart rate.  My kids will always be able to talk about how God really touched their heart.

 Caden in the NICU after he was born.







Ethan at Children's Medical Center after he was born.

Halloween: Batman & Robin

So our costume of choice this year was the dynamic duo of Batman and Robin.  For the past few months Caden has talked about wanting a superhero cape, so we thought the Batman and Robin idea would be perfect.  Caden was Batman and Ethan was Robin.  We started our night out with Trunk or Treat at Caden's preschool.  Caden spent most of the time in the bounce house and Ethan cried because he was scared of the other costumes.  Quite the adventure, but fun!

 We then headed home to do a little trick or treating in our neighborhood.  Both boys really enjoyed walking around to the different houses. There were several houses out here that had lots of decorations.  One around the corner had all sorts of Halloween Green Bay Packers decor.  It was really neat!

At most doors, Caden would say "trick or treat" and then "thank you".  Ethan was just amused with the doorbell that sometimes he would drop his candy bucket on his way to the door.  After invading all our neighbors we came back to the house to hand out the ton of candy I bought, which we really needed to get rid of so I wouldn't eat it!  Caden would holler "candy, come and get your candy".  When trick or treaters arrived he would ask them "Who are you?" and then say "I'm going to give you two pieces of candy".  It was really cute!  So this is a short version of our crazy Halloween night! 

Caden's Sport Camp

Yes, I apologize for not keeping up with new posts like I should.  I'll start my New Years resolution early for next year which will involve me doing a better job on posts.  Well, lets just say I'll try!!!

We started Caden in a sports combo camp through the rec center out here.  The rec offers hundreds of classes for all ages at multiple centers.  We figured since Caden was to young to play soccer or baseball we would just put him in a basic sports class to get familiar with sports other than the ones we play at home.  The first week he did basketball and he did surprisingly well.  He was the only kid that could walk and dribble!  The second week he played soccer and continued to get mad at his partner because he wouldn't kick the ball back.  So, Caden would run get the ball from him, go back to his spot and then kick the ball to the other kid.  The third week, they did baseball, which is Perry's favorite sport as well as Caden's.  He did so good.  He threw the ball correctly, caught several balls, and hit the ball really well off the tee. 

A couple of things happened that evening that were very funny.  Caden was up to bat and the coach was trying to explain to him how to stand correctly, well the bat was a little long so Caden decided to choke up on the bat.  Last I checked that's not something a 3 year old really understands or knows how to do.  After camp he told me that the bat was to long so he had to choke up on it!  WOW!!!  The second thing that we got a kick out of was when he was standing on base he would clap his hands and chant "Let's Go Rangers!"  Since we are living in Angel territory I don't think anybody thought that was to funny, but we sure did. 

It's amazing the things that Caden can comprehend!  Here are a few pics from the different weeks.  Oh, and I don't have any from the week of soccer.  That night was cut short due to a desert sand storm! 

And here are a couple of Ethan playing while Caden was having sports camp!!

Hanes House: Caden's Room

Yes, I know I have not posted anything in a while.  Sorry.  With the start of school and other activities it's just been a little crazy around here. 

The next show case is actually inside the house!  It's Caden's room.  Caden's room is located upstairs at the end of the hallway.  He really loves baseball so I tried to showcase that as much as possible.   And yes, there are two random windows behind his hutch.  I'm not sure why they put those there. 

So, as you can see we did actually paint, for those of you who doubted me!!

Birds

So today after we dropped Caden off at school, Ethan and I decided to go walking rather then going to the rec center.  Out here they have walking and bike trails everywhere and the majority of them are shaded.  Ethan and I strolled some of the local parks and both really enjoyed the beautiful scenery.  After our walk I decided to let Ethan play at one of the playgrounds.  He's normally one that likes the big boy slides so I figured this particular park would be good, since it had easy access to the bigger slides.  Once I let Ethan out of the stroller he took off running and I figured he was headed towards the slide, wrong, he found a group of pigeons.  He kept hollering 'bird, bird" and he just watched the birds walk around the play area.  He would even get down low like he was going to creep up on them.  I think Ethan has a fascination with birds! 

Oh and by the way pigeons are all over the place out here.  The insect companies advertise about pigeon removal.  I guess I'm just use to grackles!

Hanes House: Desert Oasis

Ok, so I'm going to start a series of blogs that will give you a tour or our Vegas home.  This way all of our Texas friends can see what Nevada living is all about.  Also, so that those of you who doubted whether I really did come out here for 3 days to paint, I finally have some proof to show it! 

I'm going to start with one of my favorite spots, the backyard!  Our backyard is actually fairly large for most houses out here.  One of the unique things I've noticed living out here is the backyards wrap around the sides of the house.  We also have a beautiful pool and spa which we spend a lot of time in.  The pool has a spill over from the spa and a waterfall too.  One of the first things we did was put up a safety fence around the pool so there is more ease with letting the boys play in the backyard.  There is also a huge sandbox in the corner of the yard.  It's shaded all day long so the boys are able to dig and get dirty pretty much any time of the day.  Ethan is really good at pouring sand on his head and we are always finding it in his diaper. 

Our backyard is also known as the baseball and soccer field.  Caden loves to go out and play baseball, he even has spots that he calls bases so he can run when he hits a home run.  We've just recently pulled out a baseball tee, and if you not paying attention you are going to get nailed by a line drive.  I guess we have a baseball player on our hands!

Well, that's the layout of the backyard.  We are still missing patio furniture but we haven't had much luck finding anything we liked yet.  If we had a garden ridge out this way that's where I would be shopping but the closest one is in Oklahoma City.  Just one of the things I miss about Texas.