I Worry

Still.

Even after the Fontan, I still worry about Eli and his health.  It is always present on my mind.  And I'm surprised, actually.

Before his last surgery I thought that once it was over, wow, no more anxiety!  We'd be free!
Not the case.

Eli is a big, beautiful boy.  And he's three now, which is a big mile stone for me and my husband.  Eli's third birthday always seemed more like a beautiful idea than a probable reality.  I was very weepy on his birthday, and all the emotions that came with that day--of remembering his birth and all the crazy that went with it--was almost too much to handle.  It really made me realize that once one becomes a heart baby parent, he/she will always be a heart baby parent.

Having Eli changed me, for the good I believe.
But sometimes I wish I didn't "feel" so much!

Most Beautiful Thing

Almost 3 year old Eli had a fit tonight. And I all I could think was how beautiful and pink he was. 

To a mother of a heart baby I don't think there is anything more beautiful than pink lips, pink nose, pink hands, and pink feet on the crying heart child. 

Christmas Sickness

Yet again, we were sick on/during Christmas. EVERY Christmas Eli has ever had he has been sick on, just before, or just after Christmas. What a tradition.

This year it was a cold and a fever. We actually saw the cardiologist just before it really set in, and she was worried about his low 90s saturation. Imagine that--being worried about a 90s saturation. Though if the low 90s saturation wasn't virus induced then it would have had serious implications... so a week later we went in to check his oxygen at it was back to mid 90s.

So here's Eli, a day after Christmas 2011, totally not wanting to take a picture because he feels awful.

And let's look back on Christmas' past. Here's Eli for Christmas 2010, on Christmas Eve, worn out from throwing up and fever. This 20 month old crashed on the floor and couldn't move. 

And Eli on Christmas 2009, 8 months old. We actually went into the ER this December 30th (we were visiting out of town and didn't know where to go but the ER) because he was showing signs of heart failure. Modeling (very vain-y), extremely pale, and no energy. Fever wasn't present, so we didn't know what was going on. 

His cheeks and nose are rubbed raw because he kept rubbing his face on the hospital sheets. 

Let's hope for a healthy Christmas Season for 2012!

Preparing For A Surgery

We knew before Eli was born that he had a heart defect, and that a surgery would happen within his first few days of life (April 2009).  This we prepared for by ____ , and appreciated it because ___ :

• Touring the hospital(s), many times. He was born at University of Utah, and had his surgery(s) at Primary Childrens Medical Center. 
• It was great to see each room, and understand each phase of the schedule. More information, the better!
• Setting up a place to stay during the surgeries. We lived 3 hours away from PCMC, and didn't have any close family by the hospital. 
• We learned quickly how awesome the Ronald McDonald House was... It felt comfortable, and a place to go to a relax. Food always available, help always near.
• Getting family members to stay with us (me and my husband), for the first few days before and after the surgery.  
• It was really nice to have at least one of our parents near, so that we could--in good conscious--take a break from the hospital room. Those breaks really helped us recharge our batteries. 
• Buying some new, cute clothing. 
• This may seem weird, but it totally helped me out... I just gave birth to a baby who I couldn't hold or cuddle, and it was sad. Having new clothes, which were comfy but stylish, helped me feel in control and put together.

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Eli's next surgery was when he was four months old (August 2009). Preparing for this one was pretty much the same as before. Though I had tried to get Eli to be a pacifier taker, it didn't happen. If that would have worked out, things would have been a little bit easier. (Self soothing at 4 months old, and all.)

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Eli's last surgery was when he was 2 and a bit years old (August 2011). This one I had been preparing for since his previous surgery. It was hard to imagine a 2 year old sitting peacefully in a hospital bed, being okay with chaos and new people all around. This we prepared for by ____, and appreciated it because ___:

• Purposefully giving him a blanket to be attached to. 
• Since he was 18 months old he had the same blanket to sleep with every night. This blanket became a favorite, and we definitely took it to the hospital with us. It never left his side, and it helped him feel in control when things were hard.
• Purposefully did not start potty training.  
• Right before he turned 2 years old we found out that he was going to have his next surgery 4 or 5 months later. I did not start potty training so that he wouldn't be confused during and after the surgery. 
• Purposefully consistent with his diet. 
• I tired to keep basic favorite foods that Eli loved always present. Mac-n-cheese, yogurt, cottage cheese, mashed potatoes, Cheerios, Gold Fish, grilled cheese, pancakes. These were a staples, on purpose. After surgery Eli he didn't want to eat too much, but needed to in order to show progress and self sustainment. After lots of tries we were able to get him to eat Gold Fish and cottage cheese... and that's pretty much all he ate for days afterward. 
• Asking my mother to stay with us for the whole hospital visit. 
• By this surgery we had three kids, and needed Matt's parents to look after our two other boys (one older than Eli, and one younger). We asked my mom, in advance, to please stay with us in Salt Lake to be our helper. So grateful we did! It pretty much worked out that me or Matt took the night and morning shifts, and my mom took the afternoon and evening. It was a 3 person rotation, like this: I stayed with Eli at night, Matt would come early in the morning to relieve me, then my mom would come by at 10 or 11. I think no one got too overwhelmed, and Eli always had someone near that he trusted. 
• And of course, cute clothes.
• By this surgery I knew having an outfit that I felt good in helped me out so much. Probably sounds way superficial, but it's true. And important enough for me to put it down twice in this post! 

Sunday's Talk

My husband and I are members of the Church of Jesus Christ of Latter-day Saints (Mormon).  During the main hour of worship, called Sacrament meeting, 2 to 3 members of the church congregation speak on assigned topics. These topics range from Repentance and Forgiveness, to the Creation and Fall. It just depends what the Bishop--the guy called to be the steward of the church congregation--feels what needs to be heard. 


Me and Matt were asked a week ago to speak during November 13th's Sacrament meeting. We've spoken many times before, and were just fine doing it again. For our topics I got "hope" and Matt got "charity." Since my talk ended up being a lot about Eli, and how we managed his situation, I thought it appropriate to share it on this blog. So here it is:
(This was more of a rough draft, hence the choppiness in some parts.)

I’m going to share a personal moment in our lives. Let’s go back 3 years to 2008:

It’s the first week of December, and Matt and I are sitting in a high-risk pregnancy doctor’s waiting room. We had been told the week previous, at this baby’s 20 week ultrasound, that one side of his heart could not be seen.  To be on the safe side, we needed to go to this doctor’s clinic because she had the skill set and the tools to be able to find it.

Our name was called, and we went back into the dark, but comfortable, ultrasound room. The ultra sound technician was nice and cheerful, and started the ultrasound with smooth efficiency.  The baby’s brain, back, kidneys, mouth, were all looked over within 10 minutes… then lastly the heart. The technician became very quiet. 5 minutes of not speaking, while conducting the ultrasound of the heart, became 10 minutes, which ultimately became 35 minutes. She didn’t need to tell me, I knew. Something was wrong… terribly. I started to silently cry.

The Doctor came in and performed her own ultrasound. She too became quiet as she searched over and over and over the baby’s heart. 

The ultrasound finished, and we sat and discussed what was going on. There was a side missing from his heart, but because she wasn’t a cardiologist she couldn’t give a diagnosis—or prognosis. Layer, upon layer, upon layer, of worry started to descend upon me as we talked.  The Doctor then said that if this heart defect was chromosomal then his likelihood of survival after birth was none. For this reason she suggested we collect some amniotic fluid so that we, and the doctors, could know for sure what we were dealing with.

I was handed the paperwork for the amniocentesis and could hardly sign my name, for my tears were coming too fast.

When Matt and I left the Doctor's office, my fear was great. I felt as if my world was slowly crumbling, and I somehow needed to stop it. Through small prayers I put my faith in action, which helped hope enter—so that despair wouldn’t overwhelm me.  

Through that day, and the next week, I was able to hold onto this feeling of HOPE and not crumble. Finally the test results of the baby’s chromosomes came back, and they were “normal boy.” I cried for joy, and through prayer I thanked Heavenly Father.

Since December of 2008, the story goes well… maybe with a few hick-ups. End of February of 2009 we finally get a diagnosis, and a positive prognosis.  (Tricuspid Atresia, the right side missing… 80%+ survival rate.)

This baby boy, Eli, was born to us in April of 2009 at University of Utah. At 5 days old he had his first open heart surgery at Primary Children Medical Center. In August of 2009 he had his 2^nd open heart surgery, at Primary Childrens.  And in August of this year he had his third, and final, open heart surgery at Primary Childrens.

When we left Primary Children for the last time I wept. For joy.  And in front of Eli’s surgeon (which made us all uncomfortable… sorry Dr. Kaza.)  For almost 3 years I had been holding onto hope that this little boy would make it through all three surgeries and do well. I hoped in Christ that this little one would be saved, and able to live a long and peaceful life.  Through much prayer I held onto the power of hope, so that I would not lose myself in worry and despair.

I tell you this personal experience to introduce you to my topic, which is HOPE.  

I think of hope as a principle, which has great importance in our lives. President Dieter F. Uchtdorf says in his talk “The Infinite Power of Hope,” that “The Apostle Paul taught that the scriptures were written to the end that we ‘might have hope.’

Hope has the power to fill our lives with happiness…

Hope is a gift of the Spirit.”

What, Then, Is Hope?

To be honest when I first got this subject, I was like, EASY!

But then I started to pounder, and I began to wonder how I should define “hope.” I started to feel like I did in the 6^th grade when my science teacher asked the class to describe the taste of salt. I couldn’t. I knew what salt tasted like, and had a lot of experience with it (I’m southern, remember… and southerners LOVE salt!), but I couldn’t put salt’s qualities into words… except, hmm… salty?

And I knew hope wasn’t hope-y.

Thankfully www.lds.org provides guidance to those (me!) who are searching for the correct description of hope.

“The word HOPE is sometimes misunderstood. In our everyday language, the word often has a hint of uncertainty. For example, we may say that we hope for a change in the weather or a visit from a friend. In the language of the gospel, however, the word hope is sure, unwavering, and active.”

My favorite parts of this definition is, “hope is sure, unwavering, and active.”

And importantly, Uchtdorf says, “Hope is not knowledge, but rather the abiding trust that the Lord will fulfill His promise to us. It is confidence that if we live according to God’s laws and the words of His prophets now, we will receive desired blessings in the future. It is believing and expecting that our prayers will be answered. It is manifest in confidence, optimism, enthusiasm, and patient perseverance.”

So Hope is confidence and Action—In Christ. I believe this is key to understand the principle of hope, and why there is its opposite of despair.

In essence despair is inaction and faithlessness in Christ.

In all things there must be an opposite. It is part of the plan of Happiness, for it gives us choice and the ability to use our accountability.  With this in mind let’s remember that there is one who would gladly see us use our choice and accountability to make ourselves unhappy. In the words of Uchtdorf, “The adversary uses despair to bind heart and minds in suffocating darkness.” And that “Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward.”

In the personal experience that I shared, I could have easily slipped into the realm of despair. And though I was sad, scared, worried, I always tried to act in faith so that I wouldn’t drown in paralyzing inability. I’ll be the first to admit that I have not gone through the last 3 years gracefully. I have cried hard and often, I have had days in which I felt like I couldn’t go on any longer—and all I wanted to do was eat ice cream… Tillimook peanut butter/chocolate ice cream. The good stuff.

… but I want to be honest with y’all. Through my simple daily pleas for my sons’ safety I was able to keep hope, and keep my head just above water. There was a lot of peace in my life, especially during Eli first year—when he was born and had two open-heart surgeries within his first 4 months of life.

And I look back on the hard moments in the hospital and wonder how we made it through that day. You know, I believe it was moment by moment. Breath by breath. Little action by little action.  These little hope blocks built upon one another, and when all the surgeries were finished and I had my embarrassing cry in front of surgeon Dr. Kaza, I had great peace in my life. And do still!

I’d like to share a poem which to me illustrates the action of Hope in a wonderful way. It’s by one of my favorite poets, Mr. Langston Hughes… and I’ll try to keep my southern accent under control while I read this:

Mother to Son

Langston Hughes

Well, son, I’ll tell you:

Life for me ain’t been no crystal stair.

It’s had tacks in it,

And splinters,

And boards torn up,

And places with no carpet on the floor—

Bare.

But all the time

I’se been a-climbin’ on,

And reachin’ landin’s,

And turnin’ corners,

And sometimes goin’ in the dark

Where there ain’t been no light.

So boy, don’t you turn back.

Don’t you set down on the steps

‘Cause you finds it’s kinder hard.

Don’t you fall now—

For I’se still goin’, honey,

I’se still climbin’,

And life for me ain’t been no crystal stair.

I am grateful for the wonderful opportunity to speak to y’all about hope. I didn’t know the exact definition—or formula—that was happening in my life these last 3 years, and I’m grateful for the knowledge that I have learned.

Simple, small prayers build hope. Hope builds happiness. And happiness is awesome.

I say these things in the name of Jesus Christ, amen. 

A Whole for His Heart

Tonight I was getting Eli's daily ration of medicine ready for him to take. I got the bottle of Aspirin out, dumped a few orange chewables in my hand, and saw one of these orange chewable Aspirins was broken in half.

How the memories of pre-Fontan came flooding back! Eli, since his Glenn Shunt at 4 months old in August of 2009, as been taking a half baby orange chewable Aspirin every night. For 2 years me and Husband Matt broke these little pills half, either by finger nail, knife, or teeth, and stuffed it in Eli's mouth.

But after the Fontan Eli was put on a whole baby Aspirin (81 mg), taken daily. I really don't miss the halving of the Aspirin ritual, and it's been really nice to just plop one in Eli's mouth without much thought involved.

Eli will always be on Aspirin (I don't know if the dose will ever increase), and we're pretty lucky that this is the only medication that he has to take! Hopefully this will continue.

Saying Thousands Words

Eli's hospital visit for the Fontan Procedure was just a week long (Aug 17, 2011 thru Aug 23, 2011), but there was a whole bunch going on.
These pictures give a great recap of all the events. If you have specific questions about a picture please feel free to contact me at shandud@gmail.com