iheartRhett.com

sharing Rhett's heart with the world

August 18, 2015
by Jordan Spangler
Comments Off on A Lesson in Humility

A Lesson in Humility

Amanda and I had this plan before the wedding to start trying for a baby as soon as we got married (Talon had just turned two), so we started setting some money aside for a totally normal pregnancy and birth. Well, as we all know in this world, life can come at you unexpectedly. When we found out the news that Rhett was going to need surgeries and all of that, the last thing on our minds was money. All you’re thinking about is this little life that you created and why this was the hand he was given. You start picturing the worst, but then they tell you that it can be “fixed” and you start figuring out what to do next. His heart won’t ever be perfect, but he’ll survive and grow and learn and be for the most part normal. 

Obviously, you’re willing to do whatever it takes to make sure your loved ones are safe and get the best care they need. There is no other option really. When we started researching how much everything would cost it was overwhelming to start out with, but then we were able to start understanding insurance calendar years and out of pocket maximums and deductibles and it wasn’t quite as bad as we had feared. Luckily Rhett’s second surgery will fall in the same insurance plan period and by then we will have reached the out of pocket maximum with birth, surgery, and a 6 week or more stay in the NICU. His 3rd surgery will be around 3 years old or so, so we’ll have to meet deductibles and out of pocket maximums again.

I think it’s important to try to find some good in every bad situation and one that I’ve already experienced so far is a lesson in humility. I don’t think I wasn’t a humble person before, but what I’ve found to be the most humbling experience of my life is when someone helps you and you literally have nothing more to give than a sincere “thank you”. I’ve always loved to help others and give when I can and I don’t know if it’s a bad thing or not, but I found those moments to be my most favorite time and money spent because of how it made me feel to make someone else feel good. There’s not a much better feeling than giving. It’s why I love Christmas so much and have spent way too much on gifts in the past for family and friends. I think this Christmas will be a little different as we’ve already told our families that they are getting one shared gift this year and it’s a brand new bundle of joy (that’s something people say right? haha)

We were out at the lake this summer and as often happens under the night sky you get involved in some pretty good conversations. It was pretty late at night and Doug and I were sitting out on the dock hanging out and I started talking about all of this and how people had wanted to give us money and I think what he said will always resonate with me. Basically, he said not to take people’s blessings away from them. That they wouldn’t be giving to you unless they could or wanted to and all I needed to do was just say thank you. Asking for and accepting help has been the biggest internal emotional struggle I’ve had since Rhett’s diagnosis and while it hasn’t gotten easier, it’s become more necessary as we are getting closer to delivery day. Optimism has always been easy for me and maybe even to a fault sometimes because I just feel like things will always work out one way or another!

So, with all of that being said I’d like to thank Cappy for setting up a gofundme for Rhett. People have been asking us and those close to us how they can help, some wanted to remain anonymous and gofundme.com has an option to do that, which is cool. She advised similarly to Doug about not taking people’s blessings away and she wanted to provide an avenue for people to donate if they wanted to. Don’t worry, I’m not going to spam your facebook page or every post with this. The most important thing to me is still that everyone who is following along with Rhett’s story is able to come to this site or read my facebook posts and stay up to date.

http://www.gofundme.com/iheartrhett

So whether it’s $10 or $100 or a good thought or a prayer or a hug a or a share or a like. I hope that one day we will be in a place where we can pay it forward.

But for now, all we can say is thank you.

-Jordan and Amanda

 

August 16, 2015
by Jordan Spangler
Comments Off on Checkup and Baby Changing Table

Checkup and Baby Changing Table

Real quick: Jay/Carrie/Cody have started a fundraiser. If you’re interested in Yeti coolers email Jay @ jay.ylda@gmail.com

 

Thursday was a checkup for Rhett and Pigpen was on vacation so we got to meet with Dr. Arraut. She was really nice and she could potentially be the one delivering so it was definitely nice to meet her.

IMG_3208 IMG_3211

 

They sat Amanda down to monitor Rhett’s heart rate and her contractions for 20 minutes. It’s called a “non stress test” or Cardiotocograph. It was fun to be able to listen to Rhett’s heart beat for a little while. Rhett printed a perfect profile, which is great news! Take a listen!

So the not so great news, but not terrible news is that Rhett has managed to flip himself over into breach position, but the doc said there is a good chance he will end up flipping back. Hey kid, chill out dude!

The only good thing about Rhett having his heart condition is that we get to see him often with our checkup visits. They measured everything and his breathing, kidney’s, and fluid all looked great. Gross part is that he’s making urine and it goes back into the fluid and he “drinks” it. Got a little Bear Grylls action going on in there. Apparently this is normal?

 

Amanda had to get a whooping cough shot and it’s quite a large needle, not looking forward to getting mine!

It was good visit with everything checking out great. I love those. Take a look at this guy!

FullSizeRender

 

This started Amanda’s weekly checkups. Her next appointment is this coming Wednesday with Dr. Thigpen.

I started working on Rhett’s changing table this weekend with my mom and Talon. I still have to add the topper and stain it, but hopefully it’ll go pretty smoothly from this point. It was some pretty hard work and my lungs are filled with sawdust I think. Here’s a picture of what it’s going to look like, except the light blue/gray will be a reddish color.

IMG_3224 pic of bench IMG_3233 IMG_3232 IMG_3231 IMG_3230 IMG_3229 IMG_3228 IMG_3227 IMG_3226

July 30, 2015
by Jordan Spangler
3 Comments

Rhett’s Doctor Day!

Rhett had a busy day yesterday. We started with an appointment with Dr. Pigpen at 9:15 (we were a little late because the elevator didn’t work) at Baylor All Saints downtown (Hi Ashley). Usually Thigpen does the ultrasound but this time someone else did it, so we got to specially request that we get some better pictures of Rhett, because frankly, Dr. Thigpen sucks at pictures. Great at doctoring, sucks at photography…

IMG_3028

As you can see he’s quite dramatic with his hand on his forehand in a “woe is me” pose. And for those of you who aren’t very skilled in reading these pictures I will also post this handy dandy one I fixed up for Amanda’s dad of the second picture.

IMG_3033

 

The appointment went great! Rhett is at 29 weeks and 6 days and is measuring at 30 weeks and 3 days. The bigger the better so he’ll be big and strong for his first surgery.

He currently weights 3lbs and 7oz which I’m sure is at least about a pound of Kit Kat’s.

So after speaking with Dr. Thigpen we found out that the plan will be to deliver on a Monday or Tuesday, likely a week before the due date of 10/8. We’ll be able to have two people in the room with us when we deliver Rhett, which will be mine and Amanda’s moms. Along with the 4 of us will be a team of up to 8 doctors and nurses so we’ll have a packed house. The plan is for Amanda to have Rhett vaginally (weird word to type onto the internet) and only in the case of an extreme emergency will Amanda be put all the way out for a C-section.

We started talking about different things and in the classic small world scenario I found out Thigpen was at the game 7 world series game in St. Louis along with me in 2011. Pretty nice to have a fellow Ranger fan on our team!

Overall the meeting with Pigpen was a good one, Rhett is growing and growing and is doing just fine. Amanda will start going for weekly checkups starting at 32 weeks.

After this it was on to Cook’s where we had an appointment with Dr. Roten, who is the Cardiologist. My mom and Amanda’s mom met us up there so we could have some extra sets of ears. Dr. Roten didn’t have a tech on hand so she did the ultrasound/echo-cardiogram herself which was really great. She’s seriously the best and always leaves us feeling so positive about everything. Just so great at what she does. After looking she confirmed what she saw the first time we were there that it is Tricuspid Valve Atresia with Malposed Great Vessels. So the plan will be to do the 3 surgeries for sure with the first one potentially being a modified Norwood surgery since the vessels are malposed.

The hope is that Rhett will get to wait about 4 to 5 days before having the surgery. They want to wait so Rhett has time for his lungs to start breathing on their own and to build up a little. While the baby is in utero his lungs are flattened since he’s not actually inhaling oxygen that is coming from Amanda. He’ll have to go on prostiglandons (or something like that) and for whatever reason that was something she wanted to tell us, even though I’m not quite sure what those are or what they do or how it affects all of this, but it was an important note. Apparently babies who go on this sometimes have trouble breathing on their own and will need a lung machine, but she said that babies who are carried nearly to full term often don’t need a breathing machine even if they are given this medicine. A definite plus.

So one of the important questions we had was whether or not we’ll get to hold him when he’s born. From the way it sounded we would have a few minutes with him where Amanda and I will get to hold him and then before the surgery we can pick up his head and feet and things like that, but I don’t think we’ll necessarily get to hold him in our arms. That part really kinda sucks, but if it’s what’s best for Rhett that is obviously the way we’re going. They are going to do an I.V. and the best way to do that is to go through his belly button where the umbilical cord was. I think that was why we couldn’t hold him because they want to make sure they can keep that open so they can use that and not have to go in another way.

He’ll be able to wear his own clothes, which is great because I know we’ll be getting a lot of awesome stuff for Rhett who is registered at Babies R Us, Target, Buy Buy Baby, and Amazon.com. Ha! They did say however that sometimes the clothes get lost in their laundry since they do all of the changing and laundry and all that stuff so not to do like family heirlooms or anything like that.

We also talked about potential learning disabilities and things like that, but Dr. Roten said that if you just spend enough time with them and figure out the best way for them to learn that they can go on to be quite normal. Many of the people who have done this have gone on to college and gotten normal jobs and all that stuff. So, I guess we’ll have to parent him the best we can. I feel like I’ll be able to crack the code and teach him, maybe that’s why God has set this task in front of us, who knows.

Here’s me vigorously taking notes!

IMG_3060

So after this meeting we ate in the “Camelot Court”. They have Chick Fil A y’all! So needless to say, I think we’ll be alright on the food situation.

Following lunch we had a meeting with Dr. Tam at 2pm (who is apparently notoriously late because people are always stopping him to ask questions)

Vincent K.H. Tam

We sat in the waiting room at his offices and passed the time with playing some of the games.

IMG_3034IMG_3035

This woman is my favorite thing in the world. We always manage to have fun!

So we got to meet with Dr. Tam and he is super nice. He’s the one who’ll be doing the surgery on Rhett and will likely be doing all three of the surgeries. We had pretty much had all of our questions answered by the time we met with him, but it was nice to meet him and run through some of the few remaining details for the the first surgery.

The prep will take a few hours and once he makes the first incision they will call Amanda or me every hour to update us throughout the 5-8 hour surgery. Rhett could be there up to a few months if he has trouble eating after the surgery. This isn’t normally a problem for most kids when they are born, but since they won’t allow Rhett to eat until after the surgery they apparently have a lot of trouble eating.

Amanda asked how big the incision would be and Dr. Tam answered it perfectly. He said it would be the absolute perfect size to get the job done. Pretty funny moment with him.

After visiting with Dr. Tam my mom took us on a mini tour of the hospital since she used to work there in IT. This place is simply awesome. They have a lot of cool things to do with Talon when he comes to visit with his little bro.

Overall the day was just great. It left us feeling so positive and ready for this thing to get going. We’re so ready for this kid to be here! But for now all we can do is take care of the other business at hand. Keep eating Amanda!

We’ve got baby showers coming up and we got Rhett’s bedding. So for now all we can do is take care of the normal baby stuff! We’re excited about the showers and we are gearing up for the big day which is merely 8-10 weeks away!

Also, Robyn is putting in the first batch of the T-Shirts if anyone else is interested. We’ve had a bunch of people order them and I know we can’t wait to wear them and to see others wear them! Thank you so much for wanting to show your love for our little boy. I can’t wait to tell him all about this someday.

Amanda is at 30 weeks today and IT. IS. GETTING. REAL!

Thank you all for reading, sharing, and following along!!!

Amanda and I are so thankful for everyone and for Cook’s!

July 18, 2015
by Jordan Spangler
Comments Off on Feelings

Feelings

We have officially reached the third trimester which means this thing is getting closer and closer to happening! Amanda and I are so ready to see him!

I find myself caught somewhere between wanting to skip past all of this and wanting time to stand still so I don’t have to face reality. We are doing everything we can to prepare ourselves for the months ahead, but I’m pretty sure we won’t even be close. I don’t think anyone can ever be truly prepared for a situation like this.

What makes me the most sad I think is that we aren’t even the ones who will be in the most trauma. I worry about what Rhett feels.

I wonder if he can feel fear. I wonder if through any of this first surgery if he’ll feel afraid or wonder what is happening. I hope this just feels normal to him (if he can feel what “normal” is) and Amanda and I can shoulder the fear.

I wonder if he can wonder. I wonder if he can even conceptualize what is happening or consider what is happening next. I hope that Amanda and I are the only ones who have to wonder what happens next.

I wonder if he can feel tension. I wonder if he can detect our worry and heartache in the room while he’s with us. I hope that Amanda and I are the only ones who can feel the tension of knowing the severity of what’s happening.

I don’t really know what he can feel or think while all of this is happening, I just hope and pray that he can feel love. I hope he can feel the love we have for him right now as he grows stronger, but weaker every day in Amanda’s belly. I hope he can feel the love as he looks in our eyes for the first time and we look into his. There’s something about a parents touch and eyes that just make you feel like everything is going to be okay. I don’t know when that feeling begins in a life, but I hope it’s instantaneous.

I remember writing in one of my first blogs about love. I don’t think it was until the doctor told me that he was a boy that I really felt much at all towards the life growing inside and it increased quickly as the doctors were telling us what was going on with Rhett, who didn’t even have a name at the time.

Our love grows stronger every day as we inch closer to the hardest days of our lives. The love all around us has grown so much from seeing people want to get involved with making sure Rhett is taken care of and that we are able to focus on just being there for him, while all of you are focusing on being there for us.

Every day as we move closer my fear and excitement grow stronger and stronger. And as much as we say that we can’t wait, it’s becoming more literal. We literally can’t wait. The time is approaching and this is one where you can’t go around it. The only way past all of this for all of us is to go right through it.

Despite all of that we are just excited to see our little boy’s face and to show him what love is.

But somehow, I feel like he already knows.

July 13, 2015
by Jordan Spangler
Comments Off on Support Rhett with a t-shirt!!

Support Rhett with a t-shirt!!

Our friend Robyn McCauley has put together an awesome T-Shirt to help support Rhett. She has asked us to share it on the website and Facebook so everyone who want’s one can contact her. Everything more than the cost of the shirt will go directly to helping with Rhett’s medical bills. We can’t thank you all enough and can’t wait to meet this kid!

 

Click this link to order!

Team Rhett_PROOF9 Big

 

July 2, 2015
by Jordan Spangler
4 Comments

13 Weeks to Go!

Well, we were stuck in a holding pattern, but I think thinks are about to start heating up. Yesterday we officially reached the Rhett’s insurance new year…haha! Anything for the next year will fall under the same insurance year plan which is great! It’s going to be a long year full of doc visits, hospital stays, two surgeries, and of course having a baby!

Yesterday we met with Pigpen for a sonogram and everything checked out normal (except the heart of course). We saw an ear, he stuck his tongue out, and we saw a hand. Measuring at a perfect 25 weeks and 6 days and is weighing almost 2 lbs. Amanda has gained 6 lbs since her last visit (sucka). I really like Dr. Thigpen, but he takes terrible pictures. The one we got looked like a middle finger and I think it was supposed to be Rhett’s face. Oh well, he’s in there and he’s facing down now (apparently a good thing), and he’s growing just fine. I’ll take it!

I wish y’all could set Talon talk to Rhett every night and will stop down throughout the day to give him a hug. Talon is obsessed with babies and wants to hold them whenever he get’s the chance. He always wants to share his things with him and tell him goodnight instead of momma. Talon is starting to get really funny! I can definitely tell that he get’s his funny bone from me even though he may not have my blood in his veins, he’s got my comedic spirit and he loves pizza. Gotta thing those are my fault.

Pigpen said his heart looks to be doing the job right now but as he grows and depends more on Amanda’s heart to pump to his lungs and all that stuff it could get a little more dicey and could lead to heart failure. Hopefully that’s not the case, obviously, but at 31 weeks he’s going to start seeing Amanda every week until Rhett is born just to monitor everything really closely.

Our next appointments are July 29th. We meet with Thigpen at 9:15, Dr. Roten (Cardiologist) at 11:00, and Dr. Tam (surgeon) at 2:00 so it’s going to be a full day of Rhett.

We are feeling really good about things right now. We hadn’t really thought much about the worst case scenario happening until we saw the news that Randy Rogers’ baby passed away. Apparently there was something wrong with her brain that no one could see before hand. Keep praying and keeping us and Rhett in your thoughts. We are ready for him to be here and get started on getting through all of this.

I saw this video a couple weeks ago and it brought tears to my eyes. I think I watched it twenty times. It’s a slightly different situation than what we’re going through but the underlying emotions really struck a chord.

“Cause dad’s are supposed to be heroes aren’t they? I think I was expecting to have a baby and suddenly be transformed into this person who knew how to deal with any situation” He goes on to say “I wasn’t supposed to be the hero in all of this, there were plenty of them; doctors and nurses and physios and paramedics and the little girl who really showed me what it means to be brave and determined and strong. She taught me that just being dad is more than enough.”

That video has really changed my whole outlook on all of this and feeling like I need to be the hero. It’s all of those peoples at the hospital that I need to be the heroes for Rhett and for us. So please pray for them too to have correct plans and steady hands.

We were at Sam’s yesterday and I found this. I told Amanda to start taking this and maybe it would help… Ha!

IMG_1334

 

 

 

 

 

 

 

 

I love that we can laugh our way through this. She’s the best partner I could ever ask for.

June 8, 2015
by Jordan Spangler
9 Comments

The Black Cloud

I try really hard to stay upbeat and positive about all of this because I think it’s the best way to live and approach things and it’s also my duty as a husband to be the rock for my family. But for some reason today I’m just having a hard time with the black cloud that’s hanging over the coming months filled with what are supposed to be absolutely happy things from baby showers to decorating Rhett’s room. I’m wishing so hard to fast forward to after the surgeries and everything and that’s just not right. It just doesn’t feel fair that I should have to feel this way, but so goes life.

I’m trying to stay busy and not dwell on it all the time, but there are constant reminders popping up every day. It’s the single most important and character defining event of my life to date. Everywhere you turn there is a post on Facebook of a new baby who is perfectly healthy and for a split instant you are bitter, but then you think about how much of a jerk you feel like for even thinking that for a second. At this point with all of the stories I’ve heard, it’s a miracle that any of these babies make it out alive! It really puts so many things into perspective in this world and makes you grow up fast. Real fast. It makes me so appreciative of everything our parents and our friends have gone through with having a baby. I hope and pray so hard that no one I know will ever have to experience the birth of their child in the way we will have to endure.

I’m obviously ecstatic that I’ll be having a baby in 17 LONG weeks, but still the dark cloud glooms overhead. I feel like I’m mentally and emotionally prepared for the hospital stay, but what do I know? I’m afraid and resolute at the same time. Excited and anxious. Thankful and jealous. Emotions pulling you in different ways daily.

I was telling Amanda about my idea for this blog post and she mentioned how the commercials with little babies that used to make her so happy now fill her with sadness when she sees the mother holding the newborn because she knows that after Rhett is born and she gets to hold him for a few short instants before the doctors and I wheel him away to attach him to an array of cables and sensors and hoses that it will be days and weeks of watching him go through pain and knowing that all we can do is put our hand through the side of his machine and touch him. We can’t hold him close to calm him. I know I will find the strength in those moments, because I must, but I worry about her. Not only will I have to watch my newborn baby lay there in pain or discomfort, but I’ll also have to stand there with nothing to say or do but hold my wife close. I hope and pray in those moments that my strength will somehow be enough for both of them.

I think about Talon having to stay with Amanda’s mom. I don’t think he’ll know the difference but he’ll have to be away from his house for days at a time. Missing out on his toys and us missing out on moments of his youth because his brother is fighting for his life, but he won’t understand that. He’ll just miss us and want to play with Rhett. I hope in those times when he gets to come to the hospital to visit Rhett he won’t see what we see. I hope we are able to have happy family time and he’ll know no different from what Rhett is dealing with compared to when any kid gets a new brother. I hope that we manage to somehow make his visits fun. I know we will because we always have fun.

I know God only puts us in situations he knows we can handle and I believe that to be true. Every time when I’ve felt my lowest I’ve made it through and I know that we’ll make it through this.

Yet, the black cloud still looms and hides the sunshine that I know will come eventually. As the rain falls I’ll hold the umbrella high and try to protect my family. The rain will fall all around us, but I know at the end of it all the sun will shine again and everything the rained touched will grow and be bigger and stronger than before it came. The sunshine is coming, but we have a long way to walk under that umbrella, but we’ll be together and we’ll make it through.

We have an amazing support system around us and the love we’ve received thus far fills me with so much hope. We are getting by just fine for now, but in the months ahead we’ll need you most of all then. Thank you for your prayers and well wishes. We cherish every single one of them and every comment or message that you send.

That came out a lot sadder than I wanted it to, but I guess that’s what happens when you pour your heart out! We WILL be okay and we can’t wait to show Rhett of to the world. Miracles are real and I am reminded of that every time I feel his little foot kick my hand as I fall asleep.

We love you all so much!

 

June 7, 2015
by Jordan Spangler
6 Comments

Rhett has his own website!

When I started the blog I thought everything would be run of the mill, but boy how things escalate quickly. With everything going on with Rhett and people wanting to stay caught up on what is going on I thought this would be the best way!

He/we have a long road ahead and we are so thankful for all that you have done. A few people have sent us websites of people going through similar things and it just seemed like the best thing to do.

This site allows for more flexibility in the content offered. I’ve started a twitter account for Rhett’s updates throughout the hospital stay for some of the quicker updates to keep people informed (they will automatically show up on the right side of this page if you are on a web browser). I also think I’m going to be able to get a live blog going so some of my family can update it during delivery day and some of Rhett’s big events!

So far writing has been the most therapeutic thing I have been able to do and I know it has helped us with not having to tell the story over and over again. The words of encouragement have been so great, so again… THANK YOU! At a time when it feels like there is nothing we can do to help Rhett, switching to a website and having more to learn and more today helps me feel like I’m at least doing something, even though it’s only words. Plus it’s pretty fun. Shoutout to Jadi for her graphic design work!

So if you’d like to receive updates when a new blog is posted you can put your email in to the right of this post if you are reading on a web browser and if you are reading on your phone you can click the header of this specific post and at the bottom of the post I think you can also subscribe! You can also add it to your homescreen on an iphone if you hit the little box with an up pointing arrow on your iphone browser and add to home screen. It creates a cool little icon and everything!

For twitter you can follow Rhett’s story @iheart_rhett

We have the best friends and family and we are all so thankful for the love and support you’ve shown.

17 weeks to go!

RhettFacebookweb

June 2, 2015
by Jordan Spangler
Comments Off on 2 in 10,000

2 in 10,000

Tricuspid Valve Atresia with Malposed Great Vessels

I’m going to memorize that at some point I’m sure.

So we finally were able to meet with Dr. Roten. She was able to see that there were four chambers,
but the Great Vessels had basically switched up so that the right ventricle didn’t really increase in size because of the way it all worked they weren’t being used. So, four chambers but the right ventricle is basically useless.

The left ventricle is strong, which Dr. Roten said is a GOOD thing. The road ahead is long, but before you get too worked up, Amanda and I are feeling good about where we are at right now.

So how do we fix this? Well, it’ll never be perfect but the idea is that Rhett will have (3) surgeries before the age of 3.

The first surgery will be when he is a few days to a week old. The second around four months old. The third around 3 years old which will hopefully be the last one.

Amanda will still deliver vaginally if everything goes according to plan and then we will have just a minute or so for her to hold him and take a few pictures. After that he will be loaded onto his cadillac (the nurse called them that) and they will roll him across the skybridge (from Harris Downtown) to Cook Children’s and he’ll be taken to his NICU room which will be ours for a few days until he is taken to the CVICU (Cardiovascular ICU) where he will have his first surgery which is called The Norwood Procedure. In one of these two rooms is where I’ll be sleeping the first night but I’m not sure.

After his first surgery we will be at the hospital for 4-6 weeks. Visiting hours are limited but Amanda and I are allowed to come and go as we please and they make it a point to keep it very involved as to what each shift is looking for and working on for that day. Rhett will have his own room and Amanda and I can sleep there and be there anytime we want. Talon will be able to visit as well as some of our family, but they have very specific rules as to who can and can’t come and for how long and when.
After the 6 weeks we can take Rhett home and all they are sending with us is a scale to weigh him everyday to make sure he is growing and a pulse oximeter to monitor his heart.
After 4 months we will take Rhett back to the doctor for the second surgery, the Glenn procedure. For this one Rhett will be in the hospital for about a week. After this one Rhett get’s to come home and be a normal kid for awhile. They said he would get a bet tired quicker because he’s getting a little less oxygen than a normal kid at this point, but he should grow just fine.
So at 3 years old he’ll have what we hope to be and what is planned to be his final surgery called the Fontan procedure. This is where they hook up the valves/vessels and all that good stuff to run his lungs. We asked about sports and they said he probably won’t be able to play most team sports passed the pee-wee level. The reason being that he needs to be in control of how hard he pushes his heart and lungs. I think we’re going to take up Golf and he’ll be able to fish and deer hunt for sure.
The doctor said she felt at about 90% that this would all be successful which made us feel good.
For now we feel just fine. We were pretty much expecting all of this and just wanted a name to put with it. Please continue praying, we appreciate you all so very much!
Oh and our favorite superhero is now Iron Man, because it make sense. Ready to see our little Iron Man and get to give him a kiss before all of this starts. I know he’ll be ready!
#dadsimple
Tricuspid Atresia 
In tricuspid atresia, there’s no tricuspid valve so no blood can flow from the right atrium to the right ventricle. As a result, the right ventricle is small and not fully developed. Survival depends on there being an opening in the wall between the atria (atrial septal defect) and usually an opening in the wall between the two ventricles (ventricular septal defect). As a result, the venous (bluish) blood that returns to the right atrium flows through the atrial septal defect and into the left atrium. There it mixes with oxygen-rich (red) blood from the lungs. Most of this poorly oxygenated mixture goes from the left ventricle into the aorta and on to the body. The rest flows through the ventricular septal defect into the small right ventricle, through the pulmonary artery and back to the lungs. Often in these children it’s necessary to do a surgical shunting procedure to increase blood flow to the lungs. Some children with tricuspid atresia have too much blood flowing to the lungs. They may need a procedure (pulmonary artery banding) to decrease blood flow to the lungs. Other children with tricuspid atresia may have a Fontan procedure. In this, a connection is created between the right atrium and pulmonary artery. The atrial defect is also closed. This eliminates the cyanosis but, without a right ventricle that works normally, the heart can’t work totally as it should.
Tricuspid atresia occurs in two out of every 10,000 live births. It makes up 1 to 2 percent of all cases of congenital heart disease. TA occurs equally in boys and girls.

 

May 22, 2015
by Jordan Spangler
Comments Off on It Takes a Village

It Takes a Village

They say it takes a village…

Well, the village is making themselves known. A mixture of fundraiser ideas as well as checks directly to us have left us speechless. To articulate the amount of thanks we have for our friends and family would be impossible. This is the hardest thing we have ever been through, but the support from everyone is making being optimistic easier and easier with each day. The good news we’ve received from doctors has us in a very good place right now. Rhett is already loved by so many. So again and a million times over. Thank you.

Rhett is moving all over the place in momma’s belly! Every movement shows how strong he already is and I think he’s ready for all of the hugs and kisses that are inevitably coming. Amanda is doing great and mostly only cries happy tears lately. We are so looking forward to the visit to the cardiologist June 2nd! Please keep Rhett in your prayers that by a miracle we will get there and they’ll say nothing is wrong, but if a secondary prayer request that in the event something is wrong that only heart surgery will be necessary and then Rhett can live a completely normal life.

Talon is so ready for Rhett to come out and play. He said he’s gonna scare him outta there!

I think Talon scared him…

Before bed one night we asked him if he was excited and he said he was going to teach him to do flips. We asked what else he was going to teach him and he walked around the room looking at all of his toys. He grabbed his toy gun and pointed at the deer and said “shoot deer”, then he pointed to his tennis ball and said “play catch”, he said a few other things and it was one of the most precious moments and a memory I’ll never forget. He is so excited and seems to totally understand what is going on (minus the medical stuff). He knows his name and he knows he’s having a baby brother. The other night after we tucked him in he called Amanda back over, lifted her shirt and gave her belly a hug and a kiss and said “Goodnight Rhett”. Memory I’ll never forget number 2. I can’t wait to watch them grow up together. I mean…look at this guy, he’s ready!

We talked to insurance yesterday and things are looking up on that front too. What we originally were told was a $1200 bill for the cardiologist visit has turned into about $300 based on the different things hitting the insurance plan and Amanda hitting her deductible. (Thank God). My plan starts over July 1st, so we’ll have to start the deductible and max out of pocket cycle over again.

I was reading some message boards of people who’s infants have had open heart surgery a few days after being born and followed by about a 2-3 week stay in the hospital and without insurance it would be in the $150k – $250k range. Thank God for insurance plans our maximum out of pocket is $10k at most from July thru June of 2016. So hopefully if worst case scenario happens and Rhett needs surgery that the first one will be enough to set him up for life and will limit future years to check ups and general little boy bumps and bruises!

So now the real task begins…. picking out bedding and getting his room ready for when we bring him home. Not to mention registering for baby showers, and making sure Amanda has khaki maternity pants.. khaki.

Spirits are high in the Spangler house and so much of it is because of all of you reading along. Writing this blog has been a great emotional tool for me and thank you all so much for the love you’ve shown my baby boy and someday when he’s older and I can show him all of these posts I know his heart will be full, even if it isn’t right now.

Again and again and again from the bottom of Amanda’s and my heart.

Thank you.