Sesame Street Party

This is a little late coming but a few weeks ago we had a Sesame Street Party for the boys at the hospital.  Our child life specialist came up with this idea to allow the boys to have time together and to give them something different then just the playroom at the hospital.  The party was so much fun and was way more than I expected. In this post I'm letting the pictures do most of the talking!  The people at Children's are amazing!  They truly treat you as if you were family.  Not that any of this is easy for us but they do make things much easier to deal with. I didn't blog about this but back in June we were able to have a family dinner together just the 5 of us!  Between a few nurses and our child life specialist they were able to arrange a meal for us in one of the conference rooms.  Perry picked the menu of steak and crab legs.  I really thought he was kidding when he told me, but that's what we had!  Again, this place has been great to us!  The people we have worked with will always have a place in our hearts for how they've helped us and Ethan!




Ok, so back to the Elmo party,  We had the party set up in the auditorium there at the hospital.  There were all sorts of games and things to do.  We played pin the tail on Elmo, glued feathers on Big Bird, and decorated cookies for Cookie Monster.  The boys also had a scavenger hunt were they found all sorts of toys.  Our child life specialist really out did herself!  One of the toys they found on there hunt was a set of plastic golf clubs and bag.  In the afternoons we  go play golf in the hallway, well a version of golf.  It usually looks more like baseball with the swing of the club. The boys really had a blast!  



Caden decided to alter one of the games which ended up being the hit of the day.  It was a pool of plastic balls, like we all use to play in when we were young, that he would run and jump in to.  Caden just loved doing this.  Well, monkey see, monkey do, Ethan wanted to join in on the fun.  He would get a running start and then Perry would help him jump into the balls.  As the game went on Perry started dumping the balls on the boys after they jumped in the pool.  Hearing the boys laugh was one of those small things I've missed so dearly during all this.  It can be difficult to find a place for the boys to just play together like they did so many months ago.  So to really see them enjoying themselves together was so wonderful.  I think sometimes it's easy to take for granted the little things like listening to the boys when they played back at home before Ethan got so sick.  Such precious words I sometimes never listened to because I was to busy doing laundry or picking up the house.  

The Wait

3 Biggest Ranger Fans

We have now been on the heart transplant list 103 days. We never dreamed we would still be at the hospital come July. Every day we pray for Ethan's special heart to come soon. We know God has his plan for Ethan but it's easy to slip into the thoughts of not understanding why it hasn't happened yet. When you realize what you are praying for each night is for some other family to lose a child it changes your perspective. It's very difficult to know how to feel and pray for such a horrible situation for one and happiness for another.

This is one thing I've really struggled with, remembering how I felt when Ethan went into cardiac arrest back in March which led to his Berlin. I felt so helpless and all I wanted to do was make things better but I couldn't. Knowing how that felt and the thought of losing a child is something I don't want to ever feel again. So how do you pray for another mother and father to have to experience that? I've talked to several different care team members and doctors at the hospital about this and they have all given different thoughts. Of course, they can't give you a biblical answer but they can hint at things. One of the approaches I was given was to remember life is going to happen and just hope the other family decides to give the gift. So my approach to how I pray is to pray for that family to decide to give the gift and also for peace for knowing they gave another child a second chance.

Daily baseball game in the hallway

The wait has been a very difficult road for us. It's the little things I miss the most.  Most of the nurses think I'm crazy when I mention that I miss doing the laundry, cooking, going to church, family time.  We've been homeless for a little over 3 months now and oh how I would love to have a normal day in our home. Sometimes it's hard to keep your strength when you are unable to go to the one place where you can get the most support, church. Every morning I read my Jesus Calling devotion. It's amazing how God finds a way to tell me what I need to hear. It's been very difficult on Perry and I but I think it's been the hardest on Caden. He's 4 and understands a little of what is going on but not everything. His whole world has been rocked. Within 2 days I took him out of school, gymnastics and away from his home and friends. He still asks when are we going home to Las Vegas. It's hard enough for me to handle this I can't imagine how it is for him.  Sadly he kind of gets left out lots of times. Our focus has been on Ethan and then Maddison came along. I think Caden truly misses having friends to play with. I think most of all he

misses his best friend, Ethan. 


Organ donation is now such a more meaningful part of our lives. It has always been a big thing for me since my dad had a kidney transplant when I was 14.  Now having a child needing a transplant it becomes an even bigger part of our lives. So if you are reading this and have not thought of becoming a donor, I do hope you consider it. 

You can also follow Ethan's story on his Facebook page, "Ethan's Heart Journey". 

Father's Day

Maddison and her Daddy

Happy Father's Day to all the Dad's out there!  I want to tell you about one special father, my husband Perry.  We thought we would be spending this Father's Day celebrating our newest addition, Maddison, but our lives have changed drastically.  Instead, we are spending this Father's Day at the hospital with Ethan praying for that new heart.  So in honor of Father's Day I would like to write about Perry and how he has been one of the most amazing Dad's through our latest adventures with Ethan.

Ethan loves to sit in his Daddy's lap.

When Ethan got sick and was put in the hospital I was 34 weeks pregnant, so it was very difficult for me to sit at the hospital all day with Ethan.  Then once Ethan got transferred back to Texas, Maddison decided to enter this world and I've had to take care of her.  As a mother all you want to do is be there for your children and let them know everything is going to be okay.  I was unable to do that so Perry stepped in.  Perry has been with Ethan almost every night since he was admitted 88 days ago.  He has held Ethan's hand, sang to him, and played silly games just to keep him calm.  When Ethan is scared he calls for his daddy.  Perry always seems to find a way to make a scary situation better for Ethan. Sometimes the hardest thing is to be strong for Ethan when you just want to cry because you know he's in pain or scared.  I've been told that some of the nurses are intimidated  by him, because he expects nothing but the best for Ethan and is not afraid to tell you when something is not done right.

At the doctors office with Caden.

Perry has always been a great dad, whether it was singing songs to the boys before bed time or just helping out.  I never doubted his strength or commitment to our family but the past few months watching him take care of us has been amazing.  There have been several times that Perry has found a way to tell me things about Ethan without giving me the bad details.  It's not that he didn't want to but he knew how much I worry about things, especially my children.  Plus, he didn't want me going in to labor any earlier than I did.  Watching him love on our kids has been so warming.  Even when he is emotionally and physically drained he finds a way to make time for the kids.

He is what keeps our family together and going.  I know I couldn't get through all of this without him.  He is truly a Godly man and I feel blessed to have him in my life.  I hope that one day God will reward him for all the things he has done for our family.  Happy Father's Day Perry!!

A Blessing in Disguise

Proud Daddy and Maddison.

With everything going on in our lives I haven't had a chance to write about our newest addition Maddison.  Maddison Diane was born April 9th at 5:04pm weighing in at 8lbs 14oz and 20in long.  She has dark hair with blonde highlights, and yes the highlights are natural!  If you haven't been following my blog, Maddison has complete AV heart block like both of the boys.  We were hoping she would be our lucky charm and not have the heart block. Maddison was scheduled to arrive on April 16th, which would of put me at 38 weeks.  Our doctors suggested the early delivery hoping her heart rate would increase after she was born.  During most of the pregnancy her heart rate was in the low 60's.  Maddison decided to come a little earlier than expected.  I went in on the morning of the 9th for a doctors appointment.  One of the issues I had during my pregnancy was an issue with low amniotic fluid.  Crazy enough that scared me more than the heart block, just because it was unfamiliar to me.  Well, the morning of the 9th I went in and had only 2cm worth of fluid, which is extremely low.  The doctor said "I think you will be having a baby today".  I also had an appointment in the same office with our cardiologist.  After meeting with her and looking at Maddison's heart she said everything was good to go for having a baby that day.  That morning I had taken the one vehicle Perry and I were driving to the appointment.  I called Perry from the doctors office and told him to get to the hospital as soon as he could.  I headed over to the hospital to check in while Perry was trying to find someone to sit with Ethan and a ride over to the hospital.  Perry finally made it around 11am thanks to his sister.  After trying to figure out the plan for the day, they decided we would shoot for around 3 or 4 for my c-section.  So the next few hours Perry and I had to figure out a name for this baby girl, and yes it took several hours.

So let me back up a bit and tell you a little about my previous deliveries.  In having schedule c-sections I have never felt a contraction or know what true labor feels like   In a way I've felt a little cheated that I never got the chance to experience this but, on the other hand I'm okay with not knowing what the pain of labor feels like.  For whatever reason God chose for us to have these children with heart block, it has left me feeling like I missed out on a lot of the things that happen when you have a baby.  For instance, I have never held one of my babies after they were born.  We got to see Caden right after he was born and then he was taken to the NICU but it was the next day before I was able to hold him.  Ethan was taken straight up to the NICU when he was born and then was transported to Children's Medical Center a few hours after he was born.  I got to see him for about 20 minutes before he was transported and it was 3 days before I was able to hold him.  With Maddison, we were able to see her after she was born before they took her to the NICU. I wasn't able to hold her until the next morning. There have been times when I've felt very angry that I missed out on those things but then I realize that's selfish of me and I should be blessed that I have these beautiful children.

Maddison right before she was transported to Children's

One of the decisions that had to be made after she was born was whether they needed to send her straight to Children's or could she stay with me at Baylor Medical Center. Luckily, she was able to stay with me but would have to be in the NICU. Maddison was requiring some oxygen and they needed to monitor her heart rate. I was able to visit her the next morning and went back there frequently. She was the largest baby in the NICU by almost 7lbs. The next day the decision was made to keep her at Baylor with me until I was discharged and then send her to Children's. The doctors in the ICU were saving a room next to Ethan just in case. The day I was discharged they decided to transport her over to Children's since she was still on oxygen. The funny thing was that the transport team was the same people who transported Ethan from the airport to the hospital 2 weeks prior. They were so nice and did a drive by in the ICU so Ethan could meet his baby sister. Unfortunately he was asleep and didn't get to see her. They put her on the 8th floor and gave me a wheelchair to get me from the ICU to the 8th floor to see both my kids. Maddison did not require any oxygen once she arrived at Children's, so she was monitored overnight. That next morning we got word they would be discharging her later that morning. We also were told they were working on getting everything cleared so we could take Maddison by Ethan's room before we left. The smile on Ethan's face when he saw his sister was priceless!!

Ethan's first time to see his Baby Sister.

Maddison is now 8 weeks old and doing good. She had her first cardiologist appointment 4 weeks ago and everything seems to be good. Her heart rate that day was 65. She had an EKG, echocardiogram, and wore a halter monitor for 24 hours. Some of the things they check for during these appointments are heart size, thickness of the heart wall, and velocities on how much blood is being pumped.  When the heart beats so slow it causes the heart itself to be larger and the walls to thicker than normal.  This is just one way the heart compensates for being so slow. We go back in 2 months for another checkup. I don't know if it's a good or bad thing that everyone knows us so well in the heart clinic!!

Halter monitor

Here lately I've questioned different events that have occurred the past several months. I've wondered why God allowed us to get pregnant knowing we were going to have a baby while we were going through a really tough situation with Ethan. But, I soon realized that having Maddison has been a blessing in disguise. She has given us something to celebrate while dealing with uncertainties with Ethan. I truly believe that having her has helped us get through all of this. God does have a reason for things even when we don't see them at first.

Big Brother Caden and Maddison

Beads of Courage



Ethan's favorite nurse, Courtney!



The 3rd of May marked the one month anniversary that Ethan has had his Berlin Heart.  We had hoped by now that we would have received that special heart but that was not God's plan.  Ethan is still doing really well.  His daily schedule consist of physical therapy, playroom time, walks around the hall, musical therapy,  and a nap.  He really enjoys getting out of his room and walking around saying hi to all the nurses, especially the blonde ones!  His favorite nurse, Courtney, comes down from the ICU once a week to visit and play.  Ethan really loves her!!  She has been super great to him and us.  She will always have a special place in our hearts.  When Ethan asks for something that we can't get him, he'll say "nurse" and then if we tell him the nurse can't do that he'll say "Courtney".  It's hilarious, I guess he's learning how the system works!! 



Ethan playing in the playroom.



Ethan, Caden, and MeMac catching butterflies.

Pictures of Ethan's friends.



Since the hospital is now our home I decided to decorate Ethan's room to feel less like a hospital room.  I printed pictures off of Caden and Maddison and other family members.  I also had some of  our friends back home send us pictures.  Ethan likes to walk over to the pictures and tell everyone who they are.  I've also hung up pictures we have colored and I put his name up on the wall.  He also has a few pictures and the most precious letter from a few of his friends from home. I bought a couple sets of sheets that are on Ehtan's bed.  He has Elmo and Texas Rangers!  When we watch the Rangers play Ethan will chant "Let's Go Rangers!" Oh and of course, we have toys all over the room!! 



One strand of Ethan's beads.



One of the coolest things that I was able to hang up were his Beads of Courage.  Every time Ethan goes through something that takes courage he gets a specific bead that represents what he went through.  We strung those beads on a wire and then I hung them up around his room.  Ethan gets beads daily for his dressing change, visits from the doctors, and having a LVAD.  One of the beads I'm really looking forward to him getting is the glass heart bead for transplant and the bead of his choice for getting discharged.  I'm amazed at how much courage Ethan has. The doctors keep telling us that he will not remember any of this, and I really hope he doesn't.  But, he has been so strong and courageous during all of this.  Sometimes I wonder if he has more courage than I do.  As a parent you try and be strong for him but lots of time it's Ethan's strength that gets me through.  He's been through so much and he's just 2 years old.  I wonder sometimes what he thinks about being hooked up to this machine that we have to push around everywhere.  It's fun to watch him when the doctors come in, sometimes he'll take their stethoscope and put it exactly where it needs to go on his chest.  Then he'll undo the cover on his Berlin and then take the mirror and flashlight and place those where they need to go.  One of his favorite things is to help the nurses push his medicines through his feeding tube.  The nurses all get a kick out of that!  I was told today that the nurses have been fighting over who gets to take care of Ethan!  I'm guessing the trying to keep the girls away has already started for this 2 year old! 

Ethan's beads hung up in his room.

I'm looking forward to being able to write about getting the call that Ethan's getting a new heart.  I just pray it comes soon.  The hardest thing for me right now is trying to have patience and to let God take control.  Not that I really have any control when Ethan will get a heart but trying to stay positive and not get down when it doesn't happen.  Instead I try to count our blessings and be thankful he's still with us and doing so well.   Every morning when I wake up one of the first things I do is think, could this be the day! I'm just ready to be all together again.

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.