Its Been A Year...

...Since we had Eli's 20 week ultrasound and were given the first clue that his heart may not be normal.

Now this will probably be a long wordy post, and I might cry while writting this, but I need to write the whole story down before I forget to much.

Last fall we were living with my parents in the Birmingham, Alabama area for Matt's interenship. I had a really great docotor who took great care of me. I was actually hospitalized over night around 11 weeks pregnant. I had gotten really pregnancy sick, but was afraid to ask for medicine because of expense. Wieght already down 13 lbs in three weeks, I contracted the flu. During the night I started emptying my stomach a few times every hour for 8 hours. In the morning Matt took me to Dr. DeRosier's office at St. Vincent's Hospital, and I was so weak I almost could not stand. She took one look at me, ordered a wheelchair, and put me in a private room on the maternity recovery floor. For 24 hours I stayed with IV bags and popciles as company.

Anyway...

Dr. DeRosier perscribed some sweet medicine, that was not very expensive, not at all! Was able to eat again and life became easier. 20 Ultrasound was schedualed for the day before Thanksgiving. My parents and little sis came with us, along with crazy 2 year old Isaac. (He was crazy, and very sleep deprived that day!)

Matt and I had the first looks at little baby-to-be, and Matt saw that baby was a boy! But did not tell me. The ultrasound tech took a lot time, but we didn't think anything of it. My parents, sister, and Isaac came in and we were told offically that baby was a boy. Hooray! Right before the end the ultrasound tech took a few more pictures, ending with the heart. I said, "Wow, you can see his chambers!" and the tech said nothing.

Dr. DeRosier went over the results with us. Said her congratulations, then metioned that the ultrasound tech did not get the best look at the heart. Dr. DeRosier said not to worry, that we will just go to a digonositic clinic the following week at UAB and they will be able to get better pictures. She said that most of the time it is just positional and there is probably nothing wrong.

My mom and Matt were pretty optimistic, but I was worried. I tried to not let it show, and just enjoy my Thanksgiving week with food, food, food! However, I had some dread.

Diagonostic Clinic oppointment came, and boy was early it in the morning! I laid on the table trying to control my fear. The ultrasound tech looked at the brain, the kedneys, the legs, the bone facial structure, and then the heart. At that point she became really, really quiet. And spent forever trying to get better pictures. I started to cry. I knew it! I knew something was wrong. The ultrasound tech left and the speacialized doctor came in. She then took more pictures of the heart. Matt was very quiet. I was very quiet. The doctor was very quiet.

The Docotor had me sit up and then told us the news. This baby's heart did not develop correctly. The right side looked to be very underdeveloped, and there was mixing of blood between the two sides. She did not have a diagnosis nor a prognosis, but told us to be optomistic. "We may not have a football player, but we could have a trumpet player."

She said that it would be important to know the baby's chromosomes, and that doing anamniocentesis would be smart. If the baby's heart defect was due to the chromosomes then the baby probably would not live past a few months after birth. She said if this was the case then most couples opt to abort the pregnancy... I was crying, but with grace, through all of this. After two minutes I was able to find my voice and say that I would have the amniocentesis. Doing an amnio may cause a miscarriage, the chances are maybe 1 in 400. So that was a hard decision. I knew even if the chromosomes were abnormal I would not abort, but I felt that doctors needed to know all that they were dealing with. I was weeping hard, and almost unable to see where I needed to sign my name to okay the amnio. As the amniocentesis started, all I could think was: "You better not kill my baby! I am not ready to say goodbye."

On the 35 minute ride home Matt and I were very quite. We got Isaac from the sitter, and then I went and laid down. I felt at peace, but maybe more overwhelmed.

It took a week to know the preliminary chromosomes. I was very much in a mechanical mode. Thank goodness I had my mom to help me with Isaac, because I don't know how I would have handled the days without her.

I got the call on a Monday evening... they looked normal! Oh, sing praises! This baby would have a chance at life! There was still so many more questions, but for now this was good news. And we needed good news.

So this is what we were doing this time last year. Thanks for bareing with me. I wasn't in the blogging world at this time, so this is probably the first time most people have heard this story. Thanks to all for the support. We so appreciate it.

Check Up!

Eli recently had a routine check up at Primary Children's Medical Center. What a trip! Because we live a few hours away, Eli and I left the night before and drove down that night. Luckily Idaho Medicaid will reserve and pay for a hotel room if one is needed. And one was needed! It was actually quite nice: two queen size beds, a clean bathroom, and a little kitchenette. I forgot to bring a pack-n-play for Eli. He kept rolling all over the place and unable to go to sleep. I called Matt at 1am just wanting to complain. Matt then suggested a prayer... oh yeah! After the prayer Matt proposed taking the comforter off the bed, folding it up, and if the bath tub was dry, lay Eli in there. This I did, and Eli fell asleep in a matter of minutes. 

Wake up was 7:30 am. Was a breeze to get ready, and we were off at 8am. I arrived at PCMC at 8:20am, was able to a scrumptious breakfast at the cafeteria--the food there is so good!--Eli gagged a bit on a napkin and threw-up all over the place, and we checked in at 9am. I need to remember to bring a stroller. Carrying a baby with two big bags without any help was not fun. 

First to Chest X-Ray. Every time we go he gets one. Just need the shirt off, then two nurses hold him down and still. Eli gets up set! But typically it only takes 5 minutes. 

Back down the hall to wait for a basic Heart Function Echo. No sedation this time, so Eli was able to eat when hungry. When Eli's name was called we were led to a small dark room with a huge bed for Eli. Shirt off again, bottle made, TV on for distraction, and the Echo began. Eli stayed pretty still while the ultrasound (echo) was performed. He just drank his bottle, which I held, and watched a bit of Mickey Mouse ClubHouse. Only took 20 minutes at most. 

Then off to another room. Eli was weighed and measured, coming in at 18.9 lbs! and 27 inches long. That is pretty big for a heart baby. Stickers were then placed all over his chest to perform an EKG, and a blood saturation  toe measurer was placed on the foot. EKG takes five minutes, but taking the stickers off afterward is killer! Blood saturation is kept on for a while--maybe 10 minutes--to figure out a good average. Eli's was a bit lower than wanted, at 80%. Doctor came in, listened to the lungs and heart. And we were done. 

All in all, two hours long. 

Eli and I got back in the car and started to 3 to 4 hour drive back home. Phew! It was exhausting. 

This blog is to chronicle Eli's adventure with Congenital Heart Defect Tricuspid Atresia. However, I hope that it becomes something more, a place of hope and peace, and where those who may have questions can get their answers. 

My goal is to bring all the resources I have found, and answer all the questions I had during this experience to this blog. 

All posts before this were copied from our family blog to this one, in order to tell Eli's entire story.  

I Have Confidence!

Posted in August of 2009

Do you know The Sound of Music?

"I have confidence." On of my favorite songs.

Today, this is my version:

"I have confidence in sunshine/ I have confidence in rain/ I have confidence that spring will come again/ Besides what you see I have confidence"

that Matt will do well on the GMAT today!

in my mom taking care of Isaac!

in Eli's doctors!

that we may return home tomorrow or the next day!

"I have confidence in confidence alone/ Besides which you see I have confidence in me."

Here are some photos of this past week's events:

Isaac playing in the water fountain in front of Primary Children's.

Your only a kid once, right?

Isaac learned how to play FoosBall, and LOVED it!

And we took him to the zoo.

Holding my boy for the first time! (Thursday afternoon)

A Daddy/Son moment.

A Doc that is pretty cool.

This is when we knew the Eli we love was back:

Instead of eating, he loves to bite down on the bottle.

His PICU room, and all the works.

Our Happy Boy!

The moment we have been waiting and waiting for happened today. Eli is now out of the PICU and healthy enough to be on the "floor." Meaning, his recovery at the hospital is almost overand we will be able to return home soon.

We thought we would be going on Friday, however Eli's ventricle (the lower chamber of the heart) started to not pump as well. He looked very sick, and was not eating enough to keep himself hydrated. (I didn't post any pictures of that day. They are hard for me to look at.) After some medication change they felt he was recovering, but kept him in the PICU just for some more observation.

Eli will be getting a Heart Echo tomorrow, and if all is well we might be able to go hometomorrow afternoon or Wednesday. Hooray!

The two week old boy named Tucker is doing remarkably well. However they will still need to stay here 4 to 6 weeks! Because he went into heart failure before they could get him here, his kidney's, and a few other things were a bit damaged. But the surgery went well on Wednesday, and hopefully they will be able to hold him soon. Because of the nature of his surgery his chest was kept open--but still bandaged--and that was closed yesterday. Soon he will come off the breathing machine. Parents are doing better, and taking it one day at a time. His defect isHLHS.

A Quick Eli Note

Posted in August 2009

All of Eli's chest tubes are gone. So now we get to hold him! HOORAY! And he has just one IV. It is awesome. He is just so much more comfortable and so much more happy. He actually smiled today! A lot at Matt, because Daddy just makes the funniest faces!

He will be transfered from the PICU to the SCU (surgical care unit) tomorrow if everything continues this well. We hope that means that we get to come home early next week. All considered everything is going great.

And every nurse and doctor are in love with Eli. He is known as the one with the long eyelashes. He is a beautiful baby.

The baby boy named Tucker is doing really well. I found out a bit more of their story:

They actually brought him home thinking he was a healthy baby boy, then three days later he was sweaty, fussy, unwilling to eat, and taking short-fast breaths. They rushed him to the Rexburg hospital just in time. It took 6 hours to stabilize him. They then boarded a plane and flew here to SLC. When they got to the PICU they were unsure if he was going to make it through the night. They said if they waited 30 more minutes to take him to the Rexburg hospital he would not have survived. He had his surgery yesterday, and is doing really well. The nurse yesterday kept saying that he was "a really really sick baby" when he got here. His heart defect deals with the left side of the heart (Eli's defect is in the right side). His aorta is really small and ill-developed, constricting the blood flow to the body (Eli's problem is too much blood flow to the lungs).

An Eli Heart Update

Posted in August of 2009

Here are some photos of this past weeks events

Saturday, two days before the surgery.

Eli loving his two fingers.

Can you believe his hair?

My parents came in from Bama on Sunday.

As a family we have secretly been keeping something from my dad:

He is going THE FINAL FOUR!

To attend is his ultimate sports dream.

We purchased 2 "lottery" positions in March, but didn't find out till last Monday if we got them (and we did!). So we had to tell him 5 months before his 50th birthday, cause we can't keep a secret this big!

He freaked out. Shook, teared up, the works!

Monday, right after getting out of surgery.

Incredible nurses. Wow. They are Incredible.

All those green machines are giving Eli medicine.

Blood pressure, prompting him to pee, morphine, etc.

Incredible nurses, as I said.

Eli is doing well. He may be transfered off the PICU floor (hooray!) and to the SCU (surgical care unit) today.

He currently has oxygen and hates the thing on his nose. When ever he has awake moments he makes a grab for it. He is now able to eat a bit of formula every few hours and seems much happier with something on his tummy. The swelling has gone down a lot!

Thank you so much for keeping us in your thoughts and prayers. We appreciate the support and love each and every person has given us.

This was the surgery I was MOST worried about. It is a lot for a little person to handle, and Eli is doing amazingly well. And we have to contribute that to everyone's faith.

We know Heavenly Father is watching us and is blessing us in amazing ways.

Please keep another family in your prayers. Tucker was born a week and a bit ago to a young couple IN Rexburg. They did not know that he had a MAJOR heart defect, and right after he was born he was life flight-ed to Primary Children's. His surgery is today. This is the couple's first baby and you can tell that they are completely overwhelmed.

And we love the 50 mm lens! Most of the pictures were taken by it.

Surgery Day - Abridged

Posted in August 2009

This is going to be brief:

Eli's surgery went really well! After the check in and such, he was taken around 7:30am and finished around 1pm. Waiting was torture! But they kept us informed through nurses and such quite frequently. We were able to see our little boy a half hour after he checked in to PICU.

He is still under and on the breathing machine. Everything looks great, and his pain is under control. Lots of family is here for our support. Both sets of grandparents (our parents) are here and looking after us and Isaac.

This is just a short post, more later with some pictures to follow...

An Eli Update

Posted in August 2009

Well, we have been here in SLC since Thursday evening. Things are going well. Currently we are chillin' in the Ronald McDonald House, in our amazing room. Love this place.

Eli's cardio cath went well yesterday. We checked in at 8am, and they started the process at 9:30am. We were expecting a 3 hour wait, but instead it only took an hour and 1/2! The cardio cath is an important part of preparing for the surgery. They strung a wire and tube through the groin artery to the heart, took pictures, measured pressures, and took some video of the heart pumping. Matt and I saw what they took afterward--pretty amazing stuff!

The main surgery will take place Monday morning. We will be checking in a 6am! Thank you all for the continued support and prayers. We do appreciate them more than you will ever know.

Eli's Open Heart Surgery Date

Posted in August 2009

We have finally been informed when Eli's surgery will be... It is going to be Monday, August 24th--bright and early in the morning. The procedure will take at least 5 or 6 hours. Again, this will be at Primary Children's Medical Center in Salt Lake City, Utah.

The procedure is known as the Glenn Shunt. They will stop the heart and put him on by-pass, but not do too much cutting to the heart during this surgery. Instead they will work with the veins and reroute the blood flow so that the blue blood from the top part of the body does not need to go to the heart, but straight to the pulmonary artery then to the lungs. His blood saturation should be in the high 80's after this is done. (Need help understanding? Check this out.)

and WE WENT CAMPING LAST NIGHT!

Just needed to get away and have some fun, you know what I mean? My sister and her husband came too.

Isaac slept really well during the night, and so did Eli.

The place we went to is called Heise Hot Springs (pronounced "high-c").

It is by the Snake River and near Kelly Canyon Ski Resort. Beautiful area!

Went swimming in the hot spring pool, did a little fishing (didn't catch anything), and played with fire!

So glad we did this.

Hot Spring pool fun!

Matt-The-Hottie-Dad

Snake River Fishing

Long Exposure Photo Experiment. Pretty cool, eh?

Isaac waking up wondering "where in the world am I?"

Eli trying to eat a spoon.

One of my favorite photos of him to date.

The happy family desperately in need of showers.

An Eli Heart Update

Posted in July 2009

We went to Primary Children's Medical Center last Friday, and this is what we learned:

1. Eli weighs 12 lbs 3 oz, and is almost 23 inches long

2. He is looking healthy, and his heart is doing well

3. With room air his oxygen saturation is 78% (average healthy person between 90 and 99%)

4. We have no date yet, but the second surgery will probably be at the end of August

Now for some fun!

Can you guess who is who?

These are pictures of Isaac and Eli at age 3 months. Isaac was 3 months old Dec of 2006 and Eli turned 3 months old earlier this month.

Did you get it right?

Isaac is the first picture, while Eli is the second.

I was surprised at their similarities, for I did not think that they looked that much a like.

This was fun to do, and just reminds me how fast they grow and change.

Eli Update

Posted in June of 2009

We went to Primary Children's Medical Center today. Oh what a day! Left at 7am, arrived there around 10:45am, were seen for an hour and half, then headed back to Rexburg at 1:30pm. But not before picking up some Chick-fil-A! Oh, how I love Chick-fil-A! And oh, how I miss not having it here in Idaho. Anyway, we got back to Rexburg around 5:30pm.

Eli is doing really well. He wieghs 11 Ilbs and is 23 inches long. Big boy! Everything is looking pretty good. The second surgery--the Glenn Shunt--is still going to be around 5 months old (give or take a month). Our next appointment will be July 17th. And if I thought today was long, it will be nothing compared to this next one. We will not be allowed to let him eat anything for 4 hours before hand, and I am sure that will be fun. They will then sedate him for an intensive heart echo (fancy word for an ultrasound of the heart). So that is what is ahead for us. We were told that he may need to go back on oxygen a month before the next surgery, but no biggy--right?

We are so grateful for everyone's prayers. Oh! And so grateful to Ashley and Dave (my sis and her husband). They totally stepped up today, and watched Isaac for us here in Rexburg while we were on our crazy Salt Lake City trip. Thanks guys!

Can You Believe It?

Posted in April 2009

Oh, so tired.

Love to have my hair washed.

Not so much about washing the rest of the body.

Isaac says, "Mom... pop!"

Can you believe it? Two weeks ago, Eli was born! Can you believe it? We have been home 1 week! Time is starting to fly by. And our boys are growing up.

Isaac has been such a great help. He gets the wipes out when Eli needs a change, this morning he held the bottle while Eli ate, and for some reason Isaac drags the car seat over to us whenever Eli gets fussy. Last Thursday I showed Isaac Eli's surgery scar, and Isaac became really concerned, "Be-be E-i, owie. Oh no..." And all that day, and the next day, whenever Eli cried Isaac would tell us that "Be-be E-i, owie, owie, owie." I have always known that Isaac has a tender heart, but I am now starting to realize how deep his little two-year old emotions go.

Eli is doing really well. He just eats, sleeps, poops, burps and then gets the hic-ups. The hic-ups are hard on him because of his surgery. Well, so is yawning and sneezing, but the hic-ups are the worst. Though I think the pain is getting better. He is not crying as hard when he gets them. The nights are getting better too. Last night he had two four hour sleep stretches. Matt and I woke up this morning brand new people!

Matt started spring semester last week, and is all caught up on the homework and assignments that he missed last week. He is taking Spanish 101, and already our house is starting to sound like we are south of the border. In high school Matt was a great Spanish student. He studied more Spanish, and learned more words than any other student in his class. In fact his teacher called him "Bad Sancho" because he would talk down to people in Spanish, and only he and his teacher knew what he was saying!

I, Shannon, am doing well. Labor and delivery were not bad at all. Which my mom calls a tender mercy from the Lord. And I agree. I had a lot of walking and sitting and walking to do the first week after Eli was born (going between hospitals and such). Adjusting to two kids is not near as hard as adjusting to being a first time mother. I am really enjoying all the little moments with the boys.

A special thanks to all those who have sent messages of support, have stopped by, have sent gifts and food. We really appreciate everything that everyone has done for us.

Also, thanks to my parents and Matt's parents. Yall have done so much for us, and we could not of done this with out you.

And a "shout out" to the Ronald McDonald House, University of Utah Hospital, and Primary Children's Medical Center. Each facility is amazing. For those who may not know, the Ronald McDonald House is a place for families that have sick kids who do not have a place to stay within 50 miles of the medical center. The food is free, the laundry facilities are free, and is only 15 dollars a night. Each house is run off of charity, and is supported through the local community. A totally awesome place, which Matt and I will be forever grateful. University of Utah Hospital was a great place to deliver. They really looked after me, and were way supportive of our situation. Thanks to Dr. Byrne, you rock all socks. And of coursePrimary Children's Medical Center. Wow! From the nurses, to the doctors, to the social works and hospitality aid, WOW! To the PICU and SCU nurses, yall are amazing. Do not know how you do what you do. Every moment we knew our little Eli was in great hands. The doctors, yall are also amazing. Thank you for making us feel that Eli was a person who had feelings and a future, and that our situation was important (and that it was okay if I cried). Dr. A.K. from Oklahoma, next time we come Matt is bringing a Boise State scrub hat for you!

Home At Last!

Posted in April 2009

Yesterday we were discharged from Primary Children's Medical Center. Yes! It was just me, Matt, and Eli on the road (my dad had taken Isaac to Rexburg a few days before) and it felt awesome to take full responsibility of our child. We made it back to Rexburg around dinner last night. Isaac was so happy to see us, and we were so happy to see him! Isaac seems so big now, physically and intellectually. We now realize that we have a real toddler, not a baby. Last night with Eli was a bit of an eye opening experience for us. We have forgotten what it is like to have a little newborn. Even though he slept for four hours straight, Matt and I woke up every hour. And we are tired! But, we are just so happy to be home, and have our family together. Eliis doing really well, though he still needs to be on oxygen (his heart is still adjusting to the surgery). We have a tank oxygen that we take with us where ever we go, and he could be on oxygen up to 3 months. We are set up with a home nursing agency that will come from time to time to check Eli's saturation levels. Our next appointment with the pediatric cardiologist at Primary Children's is in 2 weeks, so we will go from there.

PA Band Surgery

Posted in April 2009

Picture Pefect: Eli one day after surgery

Isaac call's Eli, "Bebe E-i"

Our son resting.

Eli still on the breathing tube, and under anesthetics

Eli two hours after surgery.

Eli's surgery took place on Friday morning. It went really well. Me, Matt, and my dad were expecting to have to wait in the general surgery waiting area for a few hours, but it ended up being about 2 1/2 hours. To keep my mind busy I--Shannon--watched "My Best Friends Wedding" on the area's TV. After we were told that everything went really well we were able to go and see Eli an hour later. There seemed to be more tubes than I had thought that there would be, but he looked like he was in good hands.

Around 6pm they took Eli off of the ventilator. That was a bit of a scary moment. He didn't want to breath very much on his own. He would take a deep breath, then wait--which seemed like forever--till he took another breath. Again, he was in good hands, 5 people were watching and monitoring this for a while.

Friday night turned out to be one of the hardest in my mothering life. Because his breathing was not great they could not give him a lot of pain relievers. Watching my newborn baby boy moan in pain just killed me! However around mid-night he started to improve, and a full dose of morphine was administered.

Eli is now doing just wonderful. The urine catheter , neck line, groin line, and breathing tube are all gone. It was actually all taken out before I got to the hospital Saturday morning. Still not sure when we will be discharged, but hopefully soon. I am ready to take him home!

Eli has Arrived!

Posted in April 2009

Eli was born in April

Weight:7 lbs 6 oz
Height: 20 inches


Eli's delivery was a scheduled delivery at the University of Utah. We drove down from Rexburg, Idaho Friday, and stayed the weekend with Matt's Aunt Angie (thank you so much!). My parents and sister flew in from Alabama on Saturday, and Matt's parent's and sister arrived on Sunday. We spent the Easter Sunday with family and good food, then Matt and I left for the hospital around 7pm.

WARNING: labor details, but not too detailed.
After getting my body in order, the induction started around 1am Monday morning. Because I hadn't been sleeping well over the weekend I was on some sleep medication, so i don't really remember when the labor "officially" started.
At 7am I was at a two, and the contractions were not so bad. They wanted to break my water (which causes the contractions to get harder and faster) so before doing so I got an epidural. But then afterward they decided not to break my water...
So by 10am, still a 2. Labor still going well, and not really in any pain. My water was then broken, and two hours later I was at a four.
Because they could tell Eli was in some stress they had a hunch that i was going to be pushing soon. They checked me around 1pm, and I was at a 10+2! You see, no one was around when I got this news. I had sent Matt out to eat, cause I thought it was going to be some time. And I told my parents and Matt's parents that they should leave also. I was a bit nervous all by myself!
I was told not to "sneeze, cough, or throw up" or the baby might just come. So while everyone was trying to find Matt and the doctor, I concentrated on not doing anything! They did get a hold of Matt--who when got the call had to throw most of his lunch way. And the doctor soon arrived.
I pushed through 3 contractions, and BAM! Eli was here! They let Matt cut the cord, and I was able to hold him for almost a minute.
NOTICE: labor details are over.

An hour later they brought Eli by before taking him to Primary Children's. It was a very sweet moment to see him, and all the family that were around were able to see him. Matt and I both looked at each and were like "Holy Smokes, we are a family of four!"
Matt went with the flight team, and a few hours later I was able to go and see him.

Eli is doing really really well. The doctors have looked at his heart through ultrasound, and there are no new surprises. We still haven't had a conversation about what that means with surgeries, but that is coming up.

I cannot believe that he has dark hair! But Matt was not surprised. Since the beginning of this pregnancy he has said, "Well, Isaac look like you (Shannon) with blonde hair, and Eli will look like me (Matt) with dark hair." And I think he is right