Friday, December 2, 2011

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! 

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.


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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

Monday, July 4, 2011

Save the Date!

Eli's surgery--the Fontan Procedure--has been scheduled! August 17th... 6 weeks away. AHH!

Friday, June 17, 2011

Bum-age

Eli is our chunky monkey. He weighs just a few pounds less than his brother (who is 2 yrs and 7 months older). We think Isaac is 38 pounds, and Eli is more along the lines of 33 to 35 pounds. This is pretty amazing considering Eli's heart condition.

Take a peak at their bums, and be amazed!


Weight comes with disadvantages though. His coloring can quickly take a turn for the worst when upset, and he is starting to look "blue" most of the time. Though it is really noticeable in pictures. Can you tell his coloring is off? (Remember his oxygen saturation is 78 to 84%.)

Tuesday, May 31, 2011

First Teeth Scare

This story starts out with a very worried mother, but all turns out well in the end:

One of my greatest worries with having a child with a heart condition is he/she getting a mouth problem. Oral hygiene and heart health are very much related.

Two weeks ago Eli took a big fall, and the inside of his mouth was a scarpped up. It looked like it was healing well, so I didn't worry too much.

We came to Alabama a week later, and for the first few days of the visit Eli didn't eat very much. He was crabby and started running a fever. I took a quick look in his mouth one afternoon and to my horror saw his gumline inflamed and red. I had all these horrible thoughts come rushing into my mind: "He's has an ifection!" and "We are going to be in the hospital for day!" and "We don't know anybody around here, how are we going to know what to do?!"

My mom said that she knew a dentist in town who would take a look. Phew! I was grateful that he said he'd take a quick peak to help us know what to do. (Oh, did I mention this is at 4:30 in the afternoon on a Friday?!) While getting things quickly together I started to cry. Beinging in a new area, plus worry of this little 2 year old's health, took it's tool on my very tired mind.

The cute southern drawled dentist opened his office just for us, and sat down and took a look. He seemed concered at first, but with some further looks he relaxed. "Gums do this when children are teething. His fall and this gumline are not connected." Wave after wave after wave of relief flooded my body.

Two hours after that visit Eli's fever broke and he started eating again. Isn't that the way it always goes?

Wednesday, May 18, 2011

An Eli Update

It's been a while since we've had one of these, huh? Well, it's been a while since we've been to the cardiologist. And guess what? That has changed!

Eli has had two cardiologist appointments within the last two weeks.
Here's the deal:
he weighs 30 pounds, and is 33 inches tall. He is "a square," as one nurse put it.

AND...

... Eli will probably be getting his (hopefully) last surgery at the end of the summer. The Fontan Procedure, to be more precise. We will come back from Alabama August 6th, have a cardio cath done on August 8th in Boise, and then the following week or two have the surgery down at Primary Children's Medical Center in Salt Lake City.

There is a possibility that after they do the cardio cath, look at the heart thoroughly and repair possible leaks, that we will not be doing the surgery. There are two schools of thought on doing the Fontan Procedure. Some doctors believe it needs to be done as soon as the child is two, others believe that it can wait till as long as 4 years old. Our doctor and surgeon are more on board with waiting till the child looks like he/she needs it done (up till 4 years old).

Because Eli shows signs of cyanosis (turning blue/gray color), is pretty sweaty and beginning to breathe hard during play, they think he is ready. Also his mitral valve is leaky. (The valve between the left atrium and ventricle, the pink blood side.) Doing the surgery would greatly take the stress off of this valve--for it is dealing with twice the amount of blood than typical mitral valves.

And incase you don't remember what Eli has, I'll tell you! Tricuspid Atresia. His right valve did not form, instead a wall of tissue. So he has no right ventricle, and pretty much just has two chambers. The two atriums are connected, and all the blood goes down into the left ventricle. His blood is mixed. After this last surgery the blood will no longer be mixed, the heart will only be pumping pink blood, and all the blue blood is routed to the pulmonary artery which goes to the lungs. Crazy, eh? (Creating valves and ventricles is still God's thing. We humans can only reroute!)

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Recap of today:

Eli wasn't allowed to eat or drink anything 8 hours before his sedated heart echo (ultrasound of the heart). Yes, Eli was crabby. He was very disappointed in my bag, there were no treats, no drinks, not even old crushed bags of Goldfish. (I emptied my bag out before we left, and there were like 3 bags of old crushed Goldfish.)

They didn't put him all the way under, which meant no IV! HOORAY! (IVs, oh how we hate thee!) Instead they gave him a nasty medicine which caused him to come drowsy, relaxed, and unable to form coherent thoughts. I held him the whole time while they did the heart echo, took blood pressure, and blood saturation levels. They got a good thirty minutes of this before he started to started to wiggle. We needed another 10 minutes to get all the looks at the heart that they needed. These last ten me and Matt were holding arms, and nurses were blowing bubbles and showing movies off of their smart phones.

Eli was pretty wobbly and cranky after he fully came to. This 2 year old was a handful till naptime. Wanted food, didn't want food. Wanted drinks, didn't want drinks. Wanted to walk, didn't want to walk.
At this moment (after naptime) he is enjoying a movie, juice, and Goldfish!

Monday, March 21, 2011

So Far, So Good!

We survived the Winter! No major sickness. Though it did seem that Eli or one of his brothers ALWAYS had a cold...

(present day Eli)

... Yup, no hospital visits this winter! Eli did get the flu on Christmas, but it wasn't to the extreme. I'm grateful that is becoming Spring. I don't have to worry too much about crazy bugs going around!

AND! Eli is talking. Which is great! He'll be two next month, and for us he seems to be an early talker. This is very much a good thing. We've been told that the few seconds his heart stops for the open heart surgeries (before the by-pass kicks in) are the moments that damage to "speaking" part of the brain can occur. He is talking away, 2 or 3 words together. And loves to boss his brothers around... but he loves his brothers too! He doesn't know who he is when neither are around!