Survies to Ponder

I've had two extensive phone surveys within the last 4 months about our stay and decision to chose PCMC, which have gotten me to pondering.
And holy smokes did I almost start to cry tonight at the end of the 25 minute chat.

Most of the time I think I'm healed, over all the trauma, but then I get sudden flashes of hard moments in the hospital.
Or in tonight's case a very peaceful memory...



... It was a hard first few days after Eli's (age 4.5 months) 2nd surgery, the Glenn Shunt.  It's kind of shocking to see my child's beautiful face double in size because of rerouted blood flow, and the pressures not yet stabilized.  And he's in pain, even with medication, because the pressure makes a "terrible, worse than a migraine head ache," they say.
He's just a baby.  My son, that I can't hold and comfort.

This specific day is hard.  Typically the nurses are out of this world amazing, but Eli's nurse on this particular day was... well, we know she doesn't really want to be there.  Close to retiring, and we can tell.  Matt and I spend an enormous amount of energy that day, doing our best to comfort Eli, help him eat, help him be comfortable, and we need a break.  It's shift change anyway, so perfect time to leave (since we must) and grab some food.

We are fed, we are rested, and we are ready to check-in on Eli and say goodnight.

I go down the hall, at first noticing the peace and quiet.  Soft dim light is emitting from the room, and we peek inside:  a small woman is sitting at her table going over notes, the room looks organized, and Eli is asleep.  I notice that he has been sponge bathed, he's in new pjs, and he's resting on his side (compared the back which he's been on all day).  Peace fills my insides, and I sit next to Eli's bed and just watch him...



... This memory is why I'm an emotional wreck tonight.  Wow it's a lot of tears!







  

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!

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.

........................

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.)

........................

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. 

Grateful

We are grateful for our son.  We are grateful for the modern medicine that has saved him.  Eli would have passed away around 6 weeks of age if not for open heart surgery.  Too much blood pressure in the lungs would have destroyed them.  

We are grateful for these experiences. They have taught us what love and hope and faith truly mean.  We have grown in ways never known to us before. 

We are grateful for Eli's health and his strength. 

Found this blog today. Their daughter died a year ago, she was missing her left side.  Eli is missing his right side... 

http://thegledhillfamily.blogspot.com/