Tuesday, November 15, 2011

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 2nd 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 6th 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. 

Tuesday, October 18, 2011

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.

Wednesday, October 5, 2011

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


 








Wednesday, September 28, 2011

6 Weeks Later

Can y'all believe it? It has been six weeks--today--that Eli had the Fontan Procedure! Wow! He is doing awesome. Too awesome, actually. It's been difficult to keep him from running around and injuring himself during this time of recovery.

See, a heart surgery patient needs to be careful the first 6 weeks after surgery (if the sternum was cut open) so that the bone can set right and heal right. "Careful" is not in this 2 years vocabulary... especially when he is the middle child of 3 boys, and loves to wrestle!

I can now breath easier. I no longer have to be nervous if Isaac (5 year old brother) runs into Eli, I no longer have to be extra careful when holding him underneath the arms, and I no long have to the stop crazy-fun play when Daddy comes home and all the boys want to dog-pile!

...........

Eli is doing so well.

He started to refuse to wear the oxygen a few days after he come home. I was a bit nervous about that but was able to talk to the doctor on the phone before our scheduled check-up appointment, and he said he'd be fine if he looks fine. And Eli looked great!

The day of his check-up appointment I was telling Husband Matt that Eli looks so good, and so pink! I wondered out loud if his oxygen saturation were in the high 80s (when he left the hospital two week before, his levels at room air were at 82).


Well low and behold, when Eli was hooked up he was at 95! That's right, 95!! He hadn't been in the 90s on his own since he was born. And he'd gained his weight lost in the hospital visit, so he was back up to 31 pounds. 

Life is truly wonderful after the Fontan Procedure. I always said that Eli was just Eli, and his mood could flip-flop to happy and sad within seconds. But he doesn't do that anymore. He runs without too much sweat, he plays without too much whine, and he's happy without too much upset screeching.  

Life is good. Really good. 


Here is Eli just 1 week and 2 days after surgery.
Oh how I love to see his pink, pink lips!


Wednesday, August 31, 2011

Made It!

Two weeks ago today Eli had his Fontan. He made it! And is recovering wonderfully. Just a one week hospital stay! Hooray!

We moved into a new apartment and the internet connection is not set up. As soon as it is I promise to post pictures and go into more detail. Thanks to all who have kept this lil man in their thoughts and prayers... We so appreciate all the support.

Friday, August 19, 2011

Picture Perfect


April 2009
Eli about a week old.
A few days after surgery number 1 (PA band) and on the recovery floor.


August 2011
Eli 2 and a bit years old.
A few days after surgery number 3 (Fontan Procedure) and on the recovery floor.


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

It's midnight, I'm in the hospital room with Eli, and I just have ton on my mind. Enjoy the randomness:

Eli is doing wonderfully. Staying in his bed and not trying to run out is really helping his recovery. Today he got his big chest tube out, along with the pacing wires. The day before the extra IV in his foot, the urine catheter , and the two arterial lines (neck and chest) were removed. He still has the neck IV on his right side in and two small chest tubes... I think that is it! He'll have oxygen on the whole time we are here and I'm not sure if we'll go home with oxygen or not.

See even though this is his last (hopefully) surgery, and they did separate the blood, a small opening was left in the conduit--a fenestration--to help his body adjust to the new plumbing. This is especially helpful in high altitudes. If this fenestration does not close on its own in a year or two he'll have another cardio cath to close it. What all this means is that he still dips down into the 80s, and his oxygen saturation will probably level out to low 90s. Still tons better than 75 to 80 which he was at before this surgery.

We may come home soon, like Sunday, but I'm not sure. They need to make sure the draining from the chest levels out. It started to dry up yesterday and this morning but once we got onto recovery floor his chest started to drain tons... so we were told Sunday, but we'll see how his body levels out.

Really the only hard thing we are dealing with right now is the cough that Eli has. When a person's chest is opened the lungs are exposed, the lungs in turn create mucus to protect themselves, which of course causes that person to cough. He hurts when he coughs and get scared. We support him in the sitting position while he tries to clear his airways, and he looks at us with big eyes which seem to scream "What is happening to me?!" He sweats a lot during these episodes... I mean A LOT! Soaks through pillow coverings and sheets. He's on good medication though and once these episodes are over is able to catch a few hours sleep.

This hospital stay has been a lot like the others. Have had a lot of the same nurses, but some new ones too. I love these nurses. They become family during the 12 hour shifts. Jill was my favorite for this stay, but I did spend the most time with her out of any of the others. This is new: my mom is here for the long haul, her first time being at the hospital for the whole visit. (She usually takes Isaac back to Rexburg, but since we live in Boise now Matt's parents have the two other boys.) It's been nice to have her around. She's great with Eli and is a wonderful blessing to me and Matt. Each of us three take shifts and turns, so I hope no one is getting too overwhelmed with the hospital.

Eli misses his brothers. We looked through family pictures tonight and the only name he said was "Isaac." I don't think he has forgiven us for bringing him here. There has been one slight smile, but I think that was more for the "Cars Toon Mater Tall Tales" show than for us. I hope he will understand on day... or just forget! Please, please forget! It hasn't helped that he has had some traumatic experiences with needles and IVs. He gets stuck with a needle 4 or 5 times before one is able to get a stick for an IV or blood draw. For the cardio cath last week (in Boise) we counted over 15 sticks that they tried before getting a good IV. (Eli was unconscious and asleep during all those pokes though.)

Well I may as well try to get in a few minutes sleep. To be honest it doesn't look promising, but I'll try!

Wednesday, August 17, 2011

A Quick Eli Update


Just wanted to let everyone know what's going on with Eli...

He's pink! Pink I tell you. Pink!

(Shannon will post a full blown post later if anyone is wanting more detail). The procedure went quite well. We got to see him around 2pm and he was sedated and asleep in the bed. His sats (with a little assistance from oxygen) were at 97%! Holy smokes. Amazing.

We were told that when he came to he tried to jump up and out of the bed and run home. Crazy boy. I totally believe it too. The staff has been amazed at his strength.

Simply put - he is doing amazing. The first 12-24 hours are the critical timeframe and they are keeping him sedated during this time. We welcome the drugs. :-) He is well and we are well. We'll keep you posted later...

-Matt