iheartRhett.com

sharing Rhett's heart with the world

December 12, 2015
by Jordan Spangler
2 Comments

Welcome Home, Rhett

Things are finally starting to settle down and I’m really excited to finally get to post another blog entry, be forewarned that this one will be really long because we have THIRTY FOUR days to cover! Rhett has been home for 34 days and being home with him has changed everything for the better. I want to take a minute to thank everyone at Cooks. Thank you for being there for us every second of every day for 33 days. Going into this we knew it was going to be hard and we were absolutely right. To see your child go through what Rhett had to endure was the hardest thing either of us have ever done. The entire staff was so kind and supportive to our every need. They even managed to make some of it fun, but I think that goes along with how Amanda and I decided to live out our 33 days there. Situations are only as good as you make them and we chose to keep everything as light hearted as we could. That’s just the way Amanda and I are wired and in a place that can be so sad we chose to smile.

There were reminders every day as we walked the halls that it could always be worse. There are so many brave kids there that have their own path to walk that is very different from Rhett’s, but to see the smile on those kid’s faces was uplifting every day. Those kids just have a way of smiling through it all and it’s empowering. There was a little boy who I don’t know what was wrong with but he rode around on a little tricycle while, what I’m assuming were his mom and grandmother followed behind him with his little pole that held his medicines. Everybody knew him, so I’m assuming he had been there for quite a while. I watched that kid ride around for days. One day when Talon was up there to see Rhett we ran into this kid on the playground. He had a sword and a little gun and he was fighting bad guys. Talon and I played with him for about 15 minutes as they fought bad guys together and he let Talon use his gun. I’m assuming he and Talon are about the same age. But neither he nor Talon were bothered by what was wrong with him. They were just two little kids fighting bad guys. I hope I can continue to raise my boys to see past everything on the outside and just see the person in front of them for who they really are on the inside. It was a very special moment for me as a dad to watch them play. I hope his mom felt the same way.

The support we received by all of our nurses and doctors was second to none and they made it as easy as it could have possibly been. Many of them became friends as we shared those 33 days together and a few of them I know we’ll know for a long long time.

Dr. Tam was who did Rhett’s surgery. Talk about an amazing man… to do what he does is miraculous. To think about how small Rhett’s little heart is and to see this man’s hands I can’t even imagine what that feels like to open up a child’s chest and stitch vessels together. He was so genuine when he came by to check on us and it was without question that he loves each of these kids. He’s literally saved so many children. What a life.

Dr. Roten, who is Rhett’s cardiologist, has been our main contact since we first went to Cooks. At 22 weeks she diagnosed Rhett with Tricuspid Valve Atresia with Malposed Great Vessels and wouldn’t you know it, once he was out and they took a closer look… she nailed it. When she passed us in the halls or stopped by our room she always had a smile on her face. She talks a million miles a minute but has a way of communicating in a way that calmed us at every turn. We have chosen her as his official cardiologist, so we look forward to visiting her for years to come and as Rhett keeps busting through milestones.

Dr. Duncan is one of the CICU doctors… This guy is so cool. As time went on we had a running joke about me being a doctor on the side and he’d always check with me before making any decisions to make sure I “concur”. He really helped lighten the mood and you could tell his team responded well to it. Class act. After I went back to work he ran into Amanda and said “Where’s the doctor?” Amanda told him that I had to go back to work and he said “oh…the patients needed him?” Such an awesome dude!

Dr. Davis is another CICU doctor She made Amanda feel better every time she came in to talk to us. You could see how hard she thought about how she wanted to phrase things to make us feel the most comfortable. It definitely worked. She really pushed for mom and dad time as the best medicine and we really connected with that. She has such a kind and gentle demeanor. It’s so cool to see people with so much knowledge. I wish we had been her only patient because I could’ve listened to her talk for hours.

Seeing what all of those people do really makes you question your purpose in life because you get to watch them change lives on a daily basis. I know I’ll never be a doctor, but I hope by writing this blog it’ll help even just one person that may have to experience what we went through or even something similar. So again, thank you thank you thank you Cook Children’s for making us feel special.

We left the hospital around 11:00am on November 9th. Rhett had been in the hospital for 33 days so it was weird to take him outside. I mean the kid had never even seen the sun. We loaded him up in the car. We sat in the parking lot for a minute and shed a few tears, but we were elated to finally be going HOME. I’m sure you other parents can relate to taking your kid home from the first time. It’s pretty scary, not because I don’t trust my driving but you have to worry about all the other crazies on the road. Sure enough, as soon as we get out of the parking lot somebody ran a red light. I was being overly cautious so there wasn’t any chance that they’d hit us, but still! Then when we got on the highway it sure felt like everyone was going about 100 miles per hour! Slowly but surely we made our way home and were met with welcome home balloons! Our neighbors across the street were outside so we took Rhett over to say hi. She cried.

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It’s been an amazing journey so far and it’s so weird to have so many people following along. It’s bigger than just our little family. It truly does take a village. All of the prayers and well wishes have been so comforting and every time someone new gets to see him for the first time who’s been following along it fills us with so much joy.

I think it was the day after we got home that Home Health came by to check on us. They are Cooks traveling warriors and they came to make sure we were getting settled in and to make sure we had all of the supplies we needed (believe me there are a lot). She came in and sat down and as we were talking she seemed pretty surprised as to how much we knew about what was going on with Rhett. She was asking if we knew about the feeding tube and how to change it. We told her step by step since we had been given instruction and practice at the hospital. We had all of the supplies we needed and so she was like… welp I guess we’re all good here. Boom! Momma and Daddy are on top of it!

Rhett has a pretty serious medicine schedule:

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He started out on:

  1. Enalapril – For his blood
  2. Lasix – to help him pee
  3. Aspririn – for blood
  4. Bethanechol – for puking
  5. Prevacid – for acid reflux

Since then we have stopped the Lasix and added in Miralax and gas medicine because wouldn’t you know it…he has trouble pooping.

On top of all that is making bottles! Talk about craziness… We had to mix breast milk with an acid reflux formula to help with Rhett’s little puke problem. Then you had to add that to just breast milk. You’d make like 6 bottles for the day because in the beginning Rhett was getting 60 milliliters every 3 hours. (For reference a normal shot glass is about 1 oz. which is equal to about 30 milliliters). Since being home we have moved up to 85ml every 4 hours which has made a huge difference in the amount of time Amanda has to do other things! Luckily with this new setup we can now make one bottle at a time. Feeding goes like this: Make the bottle, warm the bottle, try to feed Rhett for 20-30 minutes, measure what’s left when he’s done, add that to the feeding bag, calculate the rate/dose for the feeding tube, wait for it to finish, the clean out the bag. Basically by the time this is done it’s just about time to start all over again. Amanda was having to find time to pump in between and it was really wearing her down. We thought maybe we could try just doing the formula and since we switched to that, Rhett has been eating so much better. We are going to try to donate all of the milk Amanda has left to the hospital. He started out only drinking between 10-20ml per feeding and now he’s getting over 25ml pretty consistently. When we came home he weighed 7lbs 9 ounces and now he’s up to 9lbs 2 ounces as of today! Oh and he’s grown 3 inches since he was born.

Now that Amanda has stopped pumping she’s had a lot more time to find a little bit of sanity and with the feeding stretched out she’s finally able to get some sleep. With me being back at work I’m already getting very little sleep too just because of everything going on, so Amanda has found that it’s best for us both if she sleeps in the living room for now. After all of that time being apart while she stayed at the hospital we end up in the same boat (different boat?) once we’re home, but it’s for the better. I can’t wait for the day when we can just start sleeping in the same bed again.

Watching Talon with his little brother has been so fun! That kid loves Rhett and gets so excited when his eyes are open and he wants EVERYONE to come see. He always wants him to come lay in his bed with him before bed. The first thing he wants to do when he gets home is come see his “baby brudder”. I can’t wait to watch them grow up together. I think with Talon’s super high energy it’ll be a really good thing to help push Rhett along, considering that his heart condition is supposed to make him a little more chill (we’ll see about that). So much fun to come in the future!
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This blog has taken me quite a while to write, but there’s just so much going on. We had our first Thanksgiving and it was pretty non-eventful, which was a good thing. We’ve been able to get a decent system in place to feed on the go. Being able to leave the house has been really nice for sure.

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This past week has been really hard. Rhett has managed to come down with a cold and it seems to have coincided with a sinus infection for me and I think Talon has a cold too. It’s been a really stressful week with everyone except Amanda being sick. Rhett has been coughing and throwing up a ton, but it’s finally looking like he’s on his way to getting better. He was just starting to smile and all of that good stuff, but now he’s been in a pretty sad mood the last few days.

I think there is probably a whole lot more I could’ve written about on this one, but I really wanted to get a blog done so I can get back on a more normal blog schedule. I’m looking forward to writing about Rhett’s first Christmas.

If my math is correct, today Rhett has been home longer than he was in the hospital and that makes me happy. Glad to have you home, Rhett.

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November 23, 2015
by Amanda Spangler
Comments Off on Cardio Check-up – Mommy’s First Blog

Cardio Check-up – Mommy’s First Blog

Jordan finally talked me into writing one of these. For anyone not following along on Facebook, I’m Amanda…the momma!

Have I told y’all how much I love Dr. Roten and all of the people that work with her!!!! They are amazing, so sweet and friendly.  Rhett is gaining weight the way he should be, he currently weighs 8 lbs 5 oz!! Echo, EKG and chest X-ray all looked great.  We are stopping his Lasix medicine this week (diuretic) and if all goes well another one next week.  We go back for another check up December 14.  Then they will schedule a heart cath for the end of January and his next surgery should be around the first or second week in February. For the heart cath, we will stay overnight and they’ll have to put him to sleep and put him on a ventilator to check pressures or something like that.

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The Speech therapist came in and watched Rhett drink his bottle and said everything looked fine, but they want to schedule speech therapy to come out to our house once every other week or so to work with him on eating.  They just think he has really bad reflux.

I have been trying to get Rhett to drink most of his bottles but when he doesn’t, I feel like I have failed. Dr. Roten helped me today by saying that I was doing a great job, but I was working too hard and making Rhett work too hard. It is ok to use his NG tube for feedings and we are just trying to make sure that he knows how to drink a bottle, but doesn’t need to drink every bottle. She told me to pick 3 or 4 out of his 6 feedings a day and continue trying the bottle and put the other feedings completely through his tube (she suggested the ones in the middle of the night to put through the tube so I can get some sleep). Drinking a bottle for Rhett is like running a marathon every time.  She said after his second surgery he will start eating better. Right now it doesn’t matter how he gets his feedings as long as he’s getting them so he doesn’t get dehydrated, but it’s important for him to keep trying the bottle so he knows to eat

Today was a good day and I was able to feed Rhett through his tube while we were out, which is something I haven’t tried yet.  If you know Jordan and I you know we are always on the go. I know we can’t go as many places as before but it’s nice to know that our Thanksgiving travels won’t stress me out much.

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And look who finally got to go to the Camelot Court for lunch!

 

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Jordan told me to say that a big long blog post is coming soon describing leaving Cooks and our first couple weeks at home.

-Amanda

October 29, 2015
by Jordan Spangler
Comments Off on EAT EAT EAT EAT EAT!

EAT EAT EAT EAT EAT!

Today we were pretty surprised to find out that they were going to remove Rhett’s feeding tube. They are going to try to get him to keep his bottles down and get enough food that way. Its very weird to see him without anything attached or going into his face. It’s weird for that to be weird. The plan is that as long as he doesn’t have four consecutive feeds of 20ml or less that he should be able to stay off of the feeding tube!

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He’s really done so good. There’s a lot to happen over the next few years, but for right now it’s really nice to just have him doing well. It’s funny because we rarely even look at the monitor that tells us his heart rate and oxygenation. Since he’s been doing so great, we aren’t even really concerned about that.

Everyone here has been so great at communicating and making sure we know exactly what is going on. It’s been a little harder for me to keep up since only Amanda is staying overnight here and I’ve been staying at home. I’ve found it very hard to stay at home alone, but I think I’d sleep even less if I was trying to stay here in Rhett’s room. I am so ready for all of us to be at home living together!

Monday I’ll be going back to work, which I’m not really looking forward to. I don’t mind my job, but it’s just going to be hard while Amanda and Rhett are up here and I’m at work. I know it’s going to be a difficult time while he’s here and I’m having to get up at 5:30 in the morning to get to work, go to hospital after work, and try to get a good nights sleep so I’ll be rested for work. I’m ready to see everyone up there though!

I wanted to say a huge thank you to Ashley Ylda for her Younique party that raised money to donate to help Rhett as well as Holly at Walnut Creek Elementary for their fundraiser where the kids got to wear pajamas to work if they donated $1. We received a few really nice hand drawn cards and notes from the kids. Thank you!

This week has gone by fast, but I think it’s because Rhett has been doing great and it’s just a matter of time before we’ll get to go home. We’re obviously excited to go home, but it’s also terrifying because they won’t be here to back us up if something goes wrong. Luckily we are only 30 minutes away if there’s an emergency. One of the families we had talked to was from Abilene and they had to get a Care Flight membership so their kid could get here in 30 minutes if something went wrong. Their kid is doing great too it seems. These people really know what they are doing!

We had to take an infant CPR class and while I think I could administer CPR if I had to… I really really really don’t want to.

We’re posting lots of pictures and stuff on Facebook for people who want to follow along! Right now we are just taking it a day at a time and waiting until we get home!

Thank you all so much for your support, love, and prayers. It means more than you know and we love reading all of the comments on the Team Rhett page. You all are so awesome and we can’t wait for a lot of you to meet this little guy!!

Eat Eat Eat Eat Eat!!!!!

October 22, 2015
by Jordan Spangler
Comments Off on CICU Later!

CICU Later!

Hooray Hooray Hooray! Rhett is out of the CICU and back into the NICU which is a huge step towards him being ready for us to take home. It’s been a crazy 16 days since Rhett was born but we’re finally getting to what will be the new normal for the next couple to a few weeks. It would be a lot easier if there was a real timeline of when we’d get to take him home, but we are just trying to take it a day at a time. I’ve been staying at home because the NICU doesn’t really lend itself to two people sleeping here. Being at home in an empty house makes me really ready for all four of us to be there together again. Rhett’s and Talon’s rooms are largely untouched since went to the hospital to deliver Rhett. I’m going to regret saying this later, but I’m ready for a mess.

The night before we moved to the NICU again our nurse was Maddie and I already cleared this story with her because it may have been the hardest we’ve laughed since we got to the hospital. She was taking his temperature with a rectal thermometer so I guessed 36.8 and Amanda guessed 36.6 (celsius). Nurse Maddie said she might as well get in on this action so she took the middle and went with 36.7. The wait for the thing to register is a lot longer than one would hope so as we were sitting there waiting for the result, Nurse Maddie made a joke about poop coming out along with the thermometer. Well sure enough, beep beep, 36.7, pull, fart, poop. She laughed and said, “Looks like I’m the big winner!” It was hilarious, we were laughing so hard!

Moving to the NICU was quite a little event. They told us the night before that they thought we’d be moving the next day, but they’d said that before so we didn’t want to get out hopes up. Once they told us for sure that we were moving I thought it was a little strange that they brought in a plastic wagon to transport him. After all of the fancy shmancy carrier things that he’s been it I was pretty surprised to see this toy wagon with blankets in it. I jokingly commented to the nurse that I wasn’t comfortable with it. Come to find out, Amanda had to talk her out of taking one of the giant beds over because she thought I was seriously not cool with it.

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So here we are now in the NICU again. It feels like forever since those first two days of Rhett’s life when he was in the NICU. We ended up moving into the room right next to where we were before. This room feels a lot bigger, but it’s actually smaller. I think the weight of the situation might have made the room next door feel much smaller than it was. It feels like the hard part is all behind us for now. Obviously with two more surgeries looming in the future we have much left ahead, but for right now we’ve got a fairly healthy little boy who is working on eating and keeping it down. That’s his big battle at this point. He’s moving on up though. They took him out of his spaceship bed and put him into a crib like bed which isn’t nearly as cool, but that means he’s doing well and that there’s someone else that needs it more.

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Talon finally got to hold his little brother, he was very excited but I guess his attention span is short because he was quickly content.

He’s finally getting to wear clothes! Momma is definitely excited about that! The plan for right now is to start feeding 55ml of milk over two hours and then not feeding for an hour after that to try to get his stomach used to spaced out feeding rather than being continuously fed through his feeding tube. Baby steps and one day at a time is our plan but Rhett is moving right along!

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October 14, 2015
by Jordan Spangler
2 Comments

It Gets Better

Watching Rhett overcome so many things over his short 8 days of life has been so amazing. It’s hard to say what I expected from this experience, but getting to watch Rhett tackle challenge after challenge, and to see my wife be so strong, and the support and love from family and friends and people that don’t even know me, and Talon interact with his little brother has turned what I thought would be weeks of sadness turn into days full of smiling and happy tears. Also, yes I know that was like the worst run on sentence in the history of sentences.

I can’t express enough how thankful Amanda and I are for all of the messages of support that we have received. It’s been overwhelming in the best kind of way. The CICU staff has been so great and supportive in making us feel good ever single day. The nurses and doctors are nothing short of amazing and we’ve even had the chance to meet some of the other parents. Getting to share some of our story with them and offering them encouragement and them being able to do the same for us as we all are going through this separately, but together. With that being said, I’d like to ask that you also say some prayers for the families of Daxton, Hazel, and Leon as they are all going through their own struggles.

 

I wanted to thank Christi for her entry about Rhett on her website thewaterwife.com

http://www.thewaterwife.com/team-rhett-write-31-days-day-12-storm/

 

I’d also like to thank my friend Ashley for her online makeup sales event for Younique over the next 10 days October 15th to October 25th where she will be donating all of her commission to Rhett.

Go check out here online store at https://www.youniqueproducts.com/AEY

Join the event on facebook here! RAISING FOR RHETT

But don’t order until tomorrow!!!

 

Amanda and I got to celebrate our one year anniversary at Cook’s on the 11th. Hard to believe it’s been a whole year, but what a year it was. She is the perfect mother and wife and she has managed to smile all the way through this. We have managed to have fun throughout our stay at the CICU INN and when I go home to get good sleep, I still miss her. Thanks for an amazing year, my dear!

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So much has happened in the few days since my last blog post. This week has felt like a month! Rhett has been closed up, the breathing tube has been removed, his swelling is all but gone, he’s pee’d and pooped on his own, I was able to get him to take a bottle, he’s had countless drainage tubes removed, and momma is now getting to hold him every day.

Holding him… It’s quite an event. Don’t take for granted the ability to just pick up your baby when they are crying. Holding Rhett for us means that we need at least two nurses to come over, lift Rhett and transfer about a million wires as well as him over to Amanda who has to sit right next to Rhett’s bed and pretty much let him lay on a pillow in her lap still attached to all of his machines. There are so many times when he’s crying that we wish we could just pick him up and hold him. We try to stay close by and lean into his bed to be with him, but we both long to just grab him and pick him up. I’m trying to upload a video to youtube but apparently my internet wants to upload super slow. Once it’s finally ready I’ll include it here if you’d like to watch the video of Amanda holding Rhett for the first time after surgery.

I’m hoping that some parents who are about to go through what Amanda and I have endured over this past week somehow manage to find this page and find some comfort. I saw a mom and dad in the waiting room yesterday who looked to be about our age and it was just the two of them. It was about 9:30 and Dr. Tam had just finished their child’s surgery. Although it was only a short time ago that Amanda and I took that walk in to see our Rhett for the first time, but obviously the emotions I felt will never be forgotten. I reached out to them and told them that they are about to experience the worst part, but I assured them that things do get better. There will be giant leaps forward and baby steps back all throughout their stay in the CICU, but you just have to take it a half day at a time. Take the good with the bad, and KNOW that things are going to get better and the little baby that you saw the first day will return and the only difference will be the battle scar left on their chest and the amount your love has grown when you thought your heart couldn’t be more full.

So for anyone who hasn’t quite started their journey yet. It will be hard, you will be tired, you will cry, you will smile, you will want to break, you will feel on top of the world, but keep pushing forward. IT GET’S BETTER and the best thing you can do is just be there for your baby. When they are covered from head to toe in wires and sensors and bandages, find an clear patch of skin on their forehead and give them a kiss. Lean on your family for support and if you don’t have much support you can message me and I’ll be there for you. I wish there was a big brother/big sister type program at the hospital where parents who have been through this and parents who are about to go through this can be linked together for guidance. I wish I had someone who could’ve given me the harsh details of that first look at Rhett when he was swollen beyond belief and hooked up to a million machines. The doctors are amazing and science can achieve impossible things. Have faith in the hands that guide the hands of all of those who are there to make your kiddo better. Slowly but surely, it most assuredly gets better.

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October 10, 2015
by Jordan Spangler
4 Comments

The Toughest Kid I’ve Ever Known

 

What a week!

I don’t even know where to start with this so I think I’m just going to kind of tell the story from the day we headed to the hospital to tonight, where I am feeling so great about everything and am looking forward to sleeping in my own bed tonight.

So the week started out Sunday with what else but Amanda and I running late to get to the hospital for our own kid being born. Ha! We stopped at Braum’s for dinner because we can never decide where to go eat and wanted to try something different. Amanda ordered an order of fries and ate a few of them and then we decided that we needed to grab some chocolate malts to go. Of course we sucked these down on the way to the hospital and felt even more sick to our stomachs than we already did. It was an indescribable mixture of excitement and fear with fear winning out on my end I think, but Amanda was handling it so well. We got to the waiting room and went to check in at 8:00pm and they told us they had no rooms available because of the number of people who had come in unscheduled. They told us to go run some errands if we had them or to go eat. Well hey people, of course we didn’t have anything else to do because you told us to be here at 8:00 and we were planning on being in the hospital for 6 weeks. Our loose ends had already been tied up.

We went to the waiting room and sat and I tried to watch the Cowboy game but my mind was obviously in other places and it was hard to focus until the end of the game. I was hoping to be able to tell Rhett of the story of when he was born and how the Cowboys beat the Saints, but of course our defense blew it and we lost. But I can at least tell him that the Rangers clinched the AL West that day and that’s a pretty good story too. There were a couple other guys in there and one was a Saints fan. I told him of my hopes for the future on the Cowboys story and when the Saints won he at least apologized.

We finally made it into a room around 1:00am and we got settled and were able to get to sleep pretty quickly thinking that we’d be having a baby sometime in the afternoon the next day. Our nurse Anna Catherine was seriously so fun and we got to joke and laugh and we thought that would be the last time we’d see her since we were thinking we’d be having a baby sometime in the afternoon the next day. In the morning when we woke the gravity of the situation took over me I think and I was as sick as dog. My tummy was not agreeing with me and I threw up multiple times in the morning. Our family had begun to gather and everyone was in pretty good spirits except for sick ol’ me. Everyone left the room for them to do some kind of check to Amanda. I was able to lay down in the dimly lit room. When Ashley Ylda came in to see us for a bit she was able to do what nurses seem to always be able to do and calmed my nerves. She was a true Godsend that day and was able to help my find some peace. As the morning turned into the afternoon the nurses told us that they were taking out the cervix softener sometime around about 2pm and then they’d finally induce. This led me to think we’d actually end up having Rhett around 8pm – 10pm. As the day went on and Amanda’s contractions got stronger and stronger I grew weaker and weaker watching her in pain.

To our incredible surprise at 6:00 when the shift change went down for the nurses we were so excited to see Anna Catherine return to be our nurse through the night. She let us know that she was going to make sure we had this baby that night! We were very much anticipating for the last month or so having Rhett be born on October 5th. 10-5-15 had a really nice ring to it, right!? The night waged on and Amanda’s cervix was not agreeing with our plan. The night went on more and 10pm was far behind us at midnight came and were were not making any progress. The doc came in and said he was starting to expect that she’d start pushing sometime around the sun coming up. Our family remained by our side and in the waiting room throughout the night. THANK GOD FOR MOTHERS. Sandy and my mom barely slept while coaching Amanda through the night and calming everyone’s nerves all around us. They made me lay down and try to get some sleep and when I woke up early Tuesday morning my stomach began to act up again and throwing up just couldn’t take the knots in my stomach. Amanda was at 6cm when they gave her the epidural and talk about intense. The magnitude of everything kept growing and watching her wince in pain up until the epidural was just crazy, but I stayed with her while she got it and Anna Catherine was there to hold her as she was stuck with a GIANT needle. I was so proud of Amanda and gained respect for mothers everywhere. This birth thing aint no walk in the park! It was getting close to time to push and my mom said I had one more shot to throw up and then it was time to suck it up! Anna Catherine was clearly struggling with leaving after her shift ended, but she made the decision that she was going to stay with us and see this all the way through. She will hold a special place in our hearts forever for this decision.

So now it was time, months of worrying, crying, laughing, gifts, parties, building, decorating, and planning all came down to this. It was time…

Amanda was amazing, she pushed and pushed and pushed as she and I held her legs. I finally saw the top of Rhett’s head. Push. Push. Push. As Rhett emerged “sunny side up” he came out with his eyes open and cried before even making it out. The doctor placed him on Amanda’s chest and my world changed forever. He looked right into my eyes as he laid there on her chest and I melted. The NICU team took Rhett and cleaned him up quickly but methodical and with such intense purpose it was amazing. They moved swift and calm and bundled him up to place in Amanda’s arms. That was a moment I’ll never forget. We weren’t sure if we’d get to hold him at all because of his heart condition. Then I got to hold him too and we all cried, except him of course. Again he looked into my eyes as if to say, I’m ready dad. Let’s go do this.

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Rhett Parker Wyatt was born at 7:42am. 19.5″ and 6lbs 10oz of perfection on 10-6-15. Turns out 6-10 on 10-6 is pretty cool too.

I gave him to the team and they placed him in his clear box and we were off. As far as we had known to this point no one outside of the room was going to be able to see him, but our families were able to line the hallway that lead to the skybridge to take him to Cook’s. The moment was magic when we made our way out of the delivery area and into the hallway. My mom and I accompanied the team quickly through the skybridge and the halls of Cook’s and it felt like a maze with no end. My eyes transfixed on Rhett as he lay calmly with his eyes open watching the world around him for the first time. The trip was a blur of lights and sounds and turns and doors and we arrived in the NICU at Cook’s. They put Rhett into his new bed and began adding cables and wires and sensors and tubes. The team still moving swift and concise. “He’s doing great”, they said. Dr Roten was outside and told us he was doing just fine. What a relief.

Mom and I were then escorted back to Amanda and the rest of our family was in the room. I was feeling guilty that I hadn’t stayed with him, but the NICU team assured me he was in great hands and that they’d give us a call after they ran the rest of their tests before I could come back over.

We gathered in the room with excitement and the Cook’s team called me and told me that they checked everything and there were no problems with his brain or insides other than the heart. This was a great relief. Dr. Roten had nailed the defect at 22 weeks old, which is simply amazing.

I finally got to see Rhett again and he was laying so peacefully in his new home. He was perfect in every way except his heart.

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They told us later that day I think that his surgery would be Thursday 10-8 and he would only be two days old when he underwent his first surgery, a modified Norwood procedure. I hope to go more in depth later on what this actually means when I get the full details on what exactly they did.

The time in between birth and surgery is already a blur. It feels like it was just one really really really long day. Many amazing things happened between birth and surgery. We were able to hold him Wednesday which was a huge surprise. The nurses at Cook’s were amazing. Everyone everywhere was amazing. My wife was so amazing and to see here eyes light up when holding him for the first time since delivery is a sight I’ll never forget. I mean look at her. Wow.

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Very quickly it was Thursday and it was Rhett’s surgery day. Our family gathered in the waiting room again just a couple short days after doing the same what felt like hours ago. We were all running on fumes from lack of sleep and emotion overload, but by our side they remained. We could have never handled this the way we did without them. We are so very lucky.

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The first walk we ever took Rhett on was to surgery at 2 days old. Kissing him goodbye was so hard, but the time had come. We tried to remain calm for him as we watching him wheel away.

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When they called us at 12:21 to tell us that surgery had began I was in Amanda’s room at Harris and my stomach became uneasy again. We laid in bed together for the first time in what felt like forever and just looked and precious pictures of the perfect baby that God gave us. What an amazing blessing to be given. They were going to call us every hour with an update and at 1:30 they called to tell us that everything was going great and Rhett was doing awesome. The pit in my stomach vanished with that call and I suddenly knew everything would be okay. The day waged on with updates, each one as good as the last and at 5:11pm, 8 hours after we wheeled him to the OR, they called to tell us that surgery was over and that Rhett was doing just fine. It felt like the worst was over. Dr. Tam came to speak with us on the surgery and told us there was little more swelling that he’d have liked, but other than that Rhett did so good. I knew he would, he’s a Spangler!

Finally a little while after Dr. Tam spoke with us were were able to go into the CICU and see our son. Trust me when I tell you that there is nothing in the world that can prepare you for that sight. We are escorted in to Rhett laying on his back in his little incubator thing. Chest open with a think layer of plastic stitched over his his lungs and heart. You can see his heart beating through the yellow plastic. There are nurses and doctors everywhere. We are moved to the side a bit as they are finishing up getting him ready. He lay there swollen beyond belief with what seemed like a million tubes and wires connected to him. His eyes were swollen shut as they lift his eyelids to check on them. Amanda and I sit to the side clutching each other as our baby lay there. Tears begin falling and in a room with so much noise I could hear nothing but the sniffling of Amanda’s nose and absolute silence.

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Minutes pass in what felt like hours as we watch him lay there. It was a sight no one should ever have to see. Dr. Tam saw us struggling and came over to tell us that this was all normal and that Rhett was doing perfectly fine. Amanda and I gathered ourselves and stood up to take a picture of our Rhett laying there on the table. I didn’t need a picture to remember this, there is no way to ever forget. He was still as beautiful as ever as he lay there perfectly still except for the babump babump babump of his open chest. Speechless we walked away to speak with our families.

As we walked into the waiting room you could hear a pin drop. Our families all huddled at the door to receive us. Our mothers who had been there with us through everything locked eyes with us and we both collapsed into each of their arms. Everyone cried.

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We collected ourselves and went on to tell them how Rhett looked and showed them the picture. It was shocking, but everyone wanted to see. Some of them were able to come in afterwards and see Rhett. The picture made the real thing much easier to handle for those who were able to come in. Again, we were reassured that Rhett was doing great. The night went on and we stayed with family in the waiting room and were were able to laugh and smile again. They went home and Amanda and I went back to our boy and held each other ever closer as we watch his chest rise and lower from the oxygen tube that went through his nose. Looking back at where we are now, the hard part was over.

Rhett’s nurse walked us through all of his attachments and helped to steady our nerves. Amanda and I went to get some dinner in the Camelot Court at Cook’s. We were doing great. We were so tired, but we had made it through the hardest part of all of this. We went back up to the room. I was able to take a shower and get ready for bed and Amanda and kissed our Rhett goodnight and laid down in a dimly lit hospital room behind mountains of machines and screens and monitors to try to get some sleep. As I laid there with my wife we yet again found ways to laugh and smile. I wrapped my arms around here and the three of us got some sleep after what felt like the longest day ever.

Today was great. It was much more calm and Rhett continued to do great through the night and throughout the day. So well in fact that Amanda and I decided that I should go home and get some good rest.

That woman is the strongest woman I have ever known. She handled every bit of this with absolute grace and strength. We only cried at the same time twice. When we held him the first time and when we saw him after surgery. The rest of the time we were both able to remain strong for the other. She is my perfect partner and my perfect teammate.

Talon came today to see his little brother. He was so good with him and didn’t care about all of the wires and mess that was going on. He was just excited and he talked about how cute he was and how he was excited for him to come home so we could play catch. He talked about how small Rhett’s hands are and that he’d need a smaller glove because Talon’s was too big.

We had our family of four. The dad, the strong loving mother, the protective caring brother, and the toughest kid I’ve ever known.

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October 8, 2015
by Jordan Spangler
1 Comment

Surgery Day

Today beginning at 9:30 is Rhett’s surgery! I know he’s going to do so great, follow Rhett’s Facebook page to the right for updates. Love you all!!

October 3, 2015
by Jordan Spangler
4 Comments

Dear Rhett

 

Dear Rhett,

The time has finally come for you to make your entrance to this world. I hope that someday in the future you can look back at this and see a glimpse into what I’m feeling just hours before you are set to be induced. I am so excited for you to be here, but like any first time father… I’m terrified. I don’t know if I’m terrified more than most, but it sure feels that way. This whole thing has been different than I pictured, but no one is ever really ready for the scariest thing they are ever going to go through.

When your mom and I first found out we were pregnant, we were so excited that we couldn’t stand to wait to tell everyone! When we told our families about you they were so excited and we were so excited. A few months later we were set to find out that you were a boy and when the doctor told us about heart problem, we were so scared, but it was our family that helped us get through it all and you are so lucky to have them. Since then your extended family has grown quite a bit and there are people all over the country who have helped in making your surgery as easy on us as possible. When you look back and see all of the posts of love and prayers and all of the people wearing shirts in support of you I hope it fills you with as much joy and thankfulness as it has filled me and your mom. People praying and adding you to prayer requests at church and just showering our whole family with love has left a mark on my heart that will never be forgotten. We are ALL still so excited!

I’m sure by the time you’re reading this you’ll be well aware of my love for music and I hope that you share in that passion of mine. I want to show you the lyrics to the first and only song I’ve ever written:

“I call you on your cellphone

Tell you I’m standing outside

I need to tell you something

Can you come out tonight

And I’m out here waiting for you

It’s not about last weekend

Or the fight we had last night

It’s not about our problems

It’s about the rest of our lives

And I’m out here waiting for you

So come on down the aisle girl

And put your hands in mine

I wanna be your husband

I want you to be my bride

And I’m out here waiting for you

And I’m out here waiting for you

I hear your momma crying

She thinks there’s no end in sight

I see your little head now

Welcome to your life

And I’m out here waiting for you

And I’m out here waiting for you”

 

Now I’m sure you assuming I wrote that song about your mom, but that’s not true. I wrote that when I was 17 years old and the first three verses were for someone else, but that’s a much different kind of heartbreak than what you were born with and I’ll always be here to help you through that kind later on. The last verse, however, was written for you Rhett. I can’t tell you how long I’ve wanted to have a kid. My biggest aspirations in life were always to get married and have children and I’m so lucky to already have your mom and your brother Talon in my life, but that verse right there was for you little buddy. Many years have passed since I wrote those words and I’m finally getting to live the rest of that song.

I don’t really know what the next few weeks hold for you, but you have already been so brave and so strong. I hope that everything the doctors have said is exactly how the next month will go and you’ll be on your way to being fixed up in no time. Everyone is so excited to meet you!

No matter what happens, don’t give up on us. We’ll never give up on you so you’ve got to fight like hell during delivery and this first surgery. I have no doubt you’ll feel lonely without being held by your mom and me, but we’re right here. We’ll always be right here. It’s my job as a dad to make sure you are taken care of, but I can’t do it by myself this time. The doctors are going to have to fix you, but we’re going to be right here waiting for you to come out of surgery and start recovering so we can take you home. You’re going to love your room. It’s filled with decorations of my favorite things, which are hobbies I’ll get to pass on to you and your brother as you grow. Hunting and fishing. We’re going to have so much fun doing man stuff!

So it’s time for me to face my fears and for you to face perhaps the toughest test of your life, but I know that when you beat this you’ll be able to conquer the world.

I hope you know how much mommy and I already love you and that love is only going to grow exponentially with each passing second. We can’t wait to see your precious face.

See you soon Rhett Parker Wyatt Spangler, I’m out here waiting for you.

Love, Dad.

 

 

 

 

September 29, 2015
by Jordan Spangler
Comments Off on 5 Days Away!

5 Days Away!

Well, the time is nearing awfully quickly. I can’t believe Rhett is almost here, but we are definitely ready to get see his face! Amanda had a visit with Dr. Thigpen today and he said everything was checking out fine and Rhett was facing down, with no sign of heart failure (different than heart defect). He said she’s his easiest patient…meanwhile I’m over here trying to figure out what pregnant woman is claiming to be my wife! Amanda has managed to lose a lb since last visit and is now sitting at a total of two lbs gained throughout the entire pregnancy.

We did get a slight surprise, we will be going into the hospital Sunday night as long as nothing changes. Apparently she hasn’t dilated at all and they’ll be giving her medicine to soften her cervix? Seriously people, I can’t make this stuff up. She will still be induced Monday, but they gotta get that cervix all soft first. I’ll go ahead and add that to my “sentences I never knew existed or thought I’d type” list.

I told Amanda I’d be a little late since the Cowboys game starts at 7:30. Much like the Cowboys 2nd half defense – that was a joke.

Since we have FIVE days until we are the hospital we have obviously had a lot to do to get ready. We’re super glad we finally got Rhett’s room mostly finished except for ONE picture from hobby lobby that we just cannot find. Every time we look they are sold out. If anyone finds it please just buy it and contact me and we’ll gladly repay, if you’ll just get it for us! In the picture gallery below it’s the white deer on the dark colored wood.

For Rhett’s room I really wanted to go with something that felt rugged but soft at the same time with earth tone colors just to seem peaceful and inviting. I really like we were able to capture the essence using some of Talon’s old bedroom furniture and getting a few things to hang on the wall it feels exactly like I hoped it would. I hope he likes it! Okay, i’ll cut the designer-speak and just say I like deer and fishing. That’s what it looks the way it does!

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It’s not all fun though, I know Amanda and I have been worried about leaving Talon. I’m hoping that he’s at a sweet spot age where he doesn’t quite understand totally, but he kind of understands that this is something we must do and that he has to be tough while staying at Amanda’s mom’s house. We’re hoping to spend some really good quality time with him this weekend and maybe by Sunday he’ll be sick of us. But seriously, we’re going to miss him and we can’t wait to have our family all under the same roof again. All FOUR of us!

We still have a little bit to do, Amanda is probably most stressed about packing for all four of us (I keep telling her I’ll be fine packing on my own). The big thing is making sure Talon is packed up, we have everything we need for Rhett, and about a week or so worth of clothing and everything for Amanda and me. I know her mom will be able to grab us anything we need from our house while we’re away and bring it up there to us. Picking out clothes for Rhett at the hospital was weird because we have no idea how often or how little he’ll actually get to wear clothes, but that didn’t stop us from overpacking as we always do!

I started a facebook page for Rhett so our family can update everyone as delivery day goes on and I can post some things to it that I wouldn’t normally post to my normal facebook, but if you’d like to follow along all you have to do is follow this link and you can “like” the page! https://www.facebook.com/iheartRhett

 

The time is drawing ever closer! I’ll be doing another blog Sunday after we check in!

 

September 19, 2015
by Jordan Spangler
1 Comment

Rhett Drawing!

Thanks again to everyone who donated! I’m blown away by what was able to be raised. They sold 357 tickets and raised over $2500 to help us with Rhett’s medical bills. Thank you so much to everyone who donated the cooler and to Sew Stitchin’ Cute and Joanna Shirley who donated the personalized YETI Rambler. Click this link to get to her facebook page. She does great work!

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Sew Stitchen

So, here is the video Jay filmed for us of the drawing!