An Unexpected Journey

So, in my last post I was writing about our journey with our soon to be new little addition Maddison.  Maddison is here but since then we have adventured into a more complex situation.  3 days ago marked our 1 month anniversary for having Ethan in the hospital.  In early March, Ethan started acting like he didn't feel well.  At first I thought it was just a cold or maybe even going through a growing spurt.  Ethan seemed lethargic, he started not eating and just didn't act like himself.  I took him to the doctor and he was treated for constipation.  7 days later on March 20th, he screamed during his nap and wouldn't let me touch him without screaming.  At that point we decided to take him back to the doctor.  The doctor then sent us to the ER with an enlarged liver.  Once at the ER the doctors started talking about a possible issue with Ethan's heart.  This just seemed silly to us because he had the pacemaker and nothing had been detected in any of our previous cardiology appointments. It just didn't make sense to us that it could be a problem but they insisted on doing an echo.  The echo showed that Ethan's heart was only functioning at 20% and basically it wasn't squeezing. Instead it was described as the ventricles were just rocking back and forth.  When the heart is not functioning properly then the liver becomes enlarged, which leads to a backup in the rest of the body causing the constipation.  Ethan was then admitted to the ICU in Nevada that night.  By morning he had lost 3 1/2 pounds of fluid and was acting as if he felt 100 times better. 

The cardiologist that we had been seeing for Maddison were the same doctors seeing Ethan so they were very aware of our family history and my current situation of being pregnant.  After a few days of meds they decided to have Ethan undergo a cardio cath and biopsy of his heart, in hopes they find the cause of his heart failure.  We said fine, and suggested that we try and get Ethan back to Texas ASAP to see our cardiologist there.  On that following Monday, Ethan went for his procedure.  The doctors came back telling us we should probably start looking for a heart transplant program to get Ethan entered in.  So, we immediately started looking, knowing that Children's Medical Center in Dallas was one of our top choices since our doctors were there.  On that following Wednesday, Perry and Ethan were flown on the care flight to Dallas and he was admitted at Children's.

My Mom, Caden, and I all flew in that following Thursday hoping to hear that the doctors could easily fix Ethan and all would be well.  That day after we arrived Perry and I started meeting with transplant coordinators, psychologist, and doctors for our evaluation of getting Ethan on the transplant list.  It was very overwhelming, almost felt at times that I couldn't breathe.  The doctors suggested we put a PIC line in Ethan for a better source for his IV meds.  That next morning, Ethan went in for his procedure.  The anesthesiologist was very nervous about the meds.  He chose a very low dose of anesthesia knowing that Ethan's heart was very fragile.  He explained all the risks and as parents we said ok and felt that everything would go smoothly.  We told Ethan we loved him and they took him into the operating room.  The doctors said it would take about 45 minutes so we went to grab breakfast and then headed back upstairs to Ethan's room.  Once we got upstairs we ran into one of the social workers who had a very paniciced look on her face.  She said something had happened and we needed to meet with the doctors in the conference room.  My heart just sank.  The doctors came in and told us that Ethan's was stable but when they moved him from the operating table to the bed after the procedure he went into cardiac arrest.  He was out for about 2 minutes and they were able to bring him back.  Those are words you never want to hear but especially about your 2 year old son.  They took us to what they called the "fish bowl" and there were about 15 people in there trying to discuss the next step.  Ethan just laid there, he had 12 lines of medicine and was hooked up to a ventilator.  Our doctors assured us he was going to pull through and that they were ready if anything else might happen.  If he had another episode then they would hook him up to the ECHMO, which is a huge heart bypass machine.  If they could hold him off of that for a few days then they would put him on a Berlin heart until he received a new heart but to understand he was in a very fragile state.  The other discussion they had to have with us was about the possibility of brain damage due to his episode.  They felt that 2 minutes wasn't terribly bad but we wouldn't know until he woke up how much damage might have been done.  I have never felt so sick and helpless in my life.  My precious little 2 year old was laying there and I couldn't do anything to help him. 

The next 3 days Ethan was borderline sedated.  It was very hard for us.  If we touched him or he heard our voices he would try and wake up which would cause his heart to work to hard.  Basically, the next few days we spent in the ICU waiting room and would walk back every hour to check on him.  It was so hard not to sit there and hold his hand or rub his head.  How I just wanted to hear him say "Mommy, are you", which was a game we played at home.  On Tuesday, April 3rd Ethan went back to the OR to have his Berlin heart put in.  This is a ventricular assist device that sits outside the body and does the pumping for the heart.  They weren't for sure if they were going to have to put one or two pumps on Ethan until the procedure started.  Knowing how fragile he was just through the anesthesia was very nerve racking.  The procedure took 7 hours, which seemed like some of the longest hours of my life.  Fortunately, Ethan only had to have the Berlin on the left side of his heart, so they felt the right was functioning enough on it's own.  Once the Berlin was in his right side started functioning a little better and he had one lung that was deflated due to the enlargement of his heart.  That lung soon was inflated after the pump was put in. You would think that the surgery alone would have been plenty for us to go through, right!  Well, about the time Ethan got out of surgery the reporter on the TV was reporting a huge tornado going right through Forney.  Well, we had sent Caden to Forney the day before to stay with some friends during the surgery.  Seriously, my 2 year old just had heart surgery and now my 4 year old is in the path of a tornado.  I'm not sure why God thought we could handle another scary situation.  Luckily, Caden was safe and the tornado didn't come close to where he actually was.

Computer hooked up to the Berlin Heart.

 The day after the Berlin was placed they started letting Ethan wake up, and I finally got 

Berlin pump

to hear those precious words of "Mommy are you". Here we are 2 weeks out from Ethan's Berlin and he is doing really good. They moved him to a regular room this past Wednesday on the cardiac floor.  This has allowed us to be together as a family as well as a little more privacy.  The doctors have said that of all there Berlin patients Ethan has progressed the fastest.  He does physical and occupation therapy everyday and musical therapy twice a week.  Each day he gets stronger and wants to walk more.  It's so good to see his personality coming back out and watching him play again.  How we prayed for that those few days he was asleep.  Now our prayers are full of asking for a new heart.  Ethan will be here in the hospital until we receive that phone call that a new heart is on its way.  It's been 23 days since we last sat at the dinner table together or just enjoyed a night at home as a family.  We are now a family of 5 but have spent the last two weeks together in a hospital room. How if I could go back in time I would cherish every last meal and family time we spent together.  I wouldn't of rushed to do the dishes or get the kids to bed but just spent that time together.  My wish is to get this heart soon so we can do that again.  But, I'm so thankful that God has blessed Ethan with his Berlin heart and a great recovery, as well as amazing doctors and nurses here at Children's..  When times have felt like they were the worst possible, somehow God has shown us something great.  We may never know what caused Ethan's heart to fail or why God decided to put us through all this but for whatever reason Ethan can use this for an amazing testimony about how God gave him a special heart.  

First time Ethan met Maddison

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!