7/18/18 - A Heart For Heath

Today was perfect. Mom, my bro-dude and my physical therapist all sat with me on a play mat on the floor in my hospital room floor and did just that, played. It was a wonderful experience. I sat up and worked on my head control while Mom read me one of my favorite books; Gerald the Giraffe. I can hold my little ol' noggin' up right and turn it side-to-side really good! I am getting better and better at it. It makes me so happy that I can turn to look at whomever is talking to me, now. I sat up a long while and enjoyed the happenings of the hallway thru my bedroom window. A few visitors stopped to say Hi, too. I like that. I love company. I also moved my head to turn and look a the bright colors of the mat and to spot my dinosaur, Troy, laying amoungst the pile of toys Mom laid out. I laid down onto the cool and cushy mat, next to Troy, and we had a great conversation. I showed everyone that I can almost turn myself onto my belly. I hiked my knee up to my chest and kicked my leg out and it made me rock on my side. Then, I reached out with the corddinating arm and tipped over, about to roll onto my tummy. I'm not allowed to be on my tummy with my Berlin Heart, so PT stopped me just in time. I was super happy about it though. I'm learning some new, fun things! I loved the mat and fully intended on doing it again tomorrow...but the day took a turn that would prevent that from happening. At least for a while. 

Mom and I sat up and snuggled after my floor mat time. It was nice to get lovies and relax for the afternoon. I slept so soundly and deeply; dreaming of happy things that made me smile. Mom just watched me and smiled, too. It was also, wonderful. About 2pm today, though, my life took a turn. A big one! 

My doctor came into the room with a stale look on his face, that eventually turned into the biggest smile. He sat down and said there was something we needed to know. He continued to tell Mom that THEY FOUND A HEART FOR ME. I listened as they got into the conversation deeper. It was a surreal moment. To know I may have a chance at getting out of all this. Just yesterday, we talked about Hope and how that small trip outside of my room brought so much to my family and I. Then, to have this happen after a delightful morning...wow! Just WOW! So, Mom and doc made plans and she headed home to organize our home life before my surgery. She wanted to get back to me and snuggle again before I left for OR. 

On the way home to do chores and get life organized to be away for the night, Mom called Dad and told him the news. He was so happy! She also told him that last night, she couldn't sleep. She said to him that she had a weird pressure in/on her chest all night that she couldn't shake. Even with Tylenol and trying so hard to sleep, she couldn't get rid of it. It wasn't scary or anything, it was what Mom now thinks was some sort of sign. It had to be. Anyhow, the rest of my family slowly learned of the big news, too. A lot of them were in tears. Happy tears! This has been such a long, arduous journey, thus far...and it's just getting started! Surgeons from my hospital flew all the way out to the donor and will bring my heart gift back after first looking at it to be sure its perfect for me. They did a bunch of tests on the heart and on me before my doctor even told Mom, today, too. Once my heart gift arrives here, the surgery will happen. It will likely be about 12 hrs of OR (operation room) time; at least that is what the PA told us for a rough guess. I'll let you know tomorrow, more about that. Tomorrow's blog will be very special. Even more-so than today. Tomorrow is my birthday, again! And tomorrow is also my donor's birthday, again. His/her heart beats again to give me life and I promise to never take that for granted. 

Thank you, all of you, for continuing to pray for me, my family and my donor's family. We love and cherish you all! - Heath

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7/17/18 - Hope
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I don’t know if we had hope to start with, lost it along the way or if we never had it at all, but today we found hope. It’s been a long road, getting to today. I’ve been thru the ringer, so they say; my family included. It’s very hard to stay positive and hopeful thru such heartache. Lord knows there has been a lot of heartache in my life. Today, though, was a day we will always remember as a good day. Well, I’m little and probably won’t, but I know Mom will tell me about today and how special it was some time when I’m bigger. I am 145 days old today. That is 145 days in the hospital and 112 days on the heart transplant waiting list. Today I left my hospital room for the first time ever, in three hospitals, for a pleasure trip instead of an OR visit. I got to go on my first adventure. I explored the hallways (IV pole, Oxygen and Berlin Machine in tow) and checked out all the interesting things on my unit. I am so thrilled!! Once I get myself more familiar with my surroundings, I can go find my girlfriends, they don’t have to just come to me! He, he 😉 This is a huge step in my journey...my very first taste of freedom from my illness. It gave my Mom, family, friends and care team a new peek at hope. Hope for this adversity to be something I can fight thru and come out okay. It was a great day. No more to say tonight. It was a great day. I’m so thankful. Please continue to pray for me, my family and my someday donor’s family. Pray my heart gift comes soon ❤️ -Heath

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7/16/18 - Therapy, Therapy, Therapy

Today I had lots of therapy. I think this will be how my days go for a while, so long as I am doing well. I have a lot of catching up to do. I have been in the hospital my whole life! So, I am behind on some of the normal things babies my age do. To learn those things, I have therapists that come visit me all week and I have therapy sessions with them. I work on all kinds of things! I have never nursed, drank from a bottle or learned how to suck on a binkie. My speach therapist is now coming to see me to help me learn. I also lack muscle and am a little stiff thru my body (I’ve gotten better); I need to learn other things like just general motor skills and how to hold my head up. My physical and occupational therapists come in to help with that. You’ve seen them help me sit up in pictures in past blogs. So, today was full of those things. I sat up in this thing, I think it was called a pro-form. It’s a foam molded chair that sits me up high. I was a little bit too small for it still, though. I went from there, into my bouncy chair instead. It was much more cozy for me. I showed the therapist how I reach out and bat my mobile; she liked that. Then, Mom put my Dinosaur by the mobile. Bad Idea. Troy tried to eat my mobile critters! I was so nervous, but he was just playing. Whew! 

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Another time during my day, I sat up and snuggled with my Mommy. She smooched my forehead, rocked me and hummed songs to me. I needed to nap, but I was more concerned with visiting. We love looking at each other. It was so nice. We had a few visitors stop in and see us while we snuggled. A few of my doctors. They all are very happy with how I’m doing with this Berlin Heart LVAD situation. That makes us happy. I’m glad I’m doing well right now and hope that I keep doing so. I’m trying. I’m also trying to eat my hand...that’s my mission. Eat hand, grow teeth!

That afternoon was like any other...nap time. Mom sat with me and patted me until I dozed off in my Boppy. I slept all afternoon. Hoping to have a great night tonight. Tomorrow could be a great great day! The first of good memories for me! I’m so excited to share tomorrow 😁 Good Night. - Heath

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7/15/18 - Peek-A-Boo

I snuggled with Dad again. Just a short while, though, because I was a little uncomfortable. I’m still learning how to cough, now that I’m extubated, because I had a ventilator tube down there most of my life. So, it’s new and I’m struggling with it a little bit. I’m doing better each day, though. I can cough to help clear my throat, but coughing up stuff is hard still. So, sometimes I get kinda upset when I’m trying to get gunk up. Anyhow, that’s why I didn’t snuggle too long today. It was still nice. Dad and I visited and Mom took pictures. I was touching Dad’s prickly beard. It was so weird and I liked to run my hand over it. Maybe someday, I’ll grow me one?  

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After I got back to my crib, I sat up in my bouncy chair. Mom and Dad played Peek-A-Boo with me! I do that now, play. It was fun! My dinosaur, Troy, dipped down under my chair and then popped back up and said “Rarrr!” and then dipped back down and hid. It made me giggle. He’s a silly dinosaur. I like peek-a-boo. 

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I also still like my mouth. I’m teething, no doubt about it. I drool with the best of them and smear it all over my face when chewing on my hand. I’m nasty. Mom says so. But, still cute! Drool face and all! So cute, in fact, that I now have passing-by doctors stopping in my room to read me books! That happened today and I loved it! I love company. People. I don’t like to be alone. When I can, I glare at people and follow them with my handsome blue eyes and it makes them come visit with me. I think I have a superpower? “The Glare”...hmm? 

I had a good day over all. Please keep praying my heart gift comes soon, though. Today marks 110 days on the heart transplant waiting list. I’m a 1A, priority, listee, but I’m still here waiting. It’s been quite the wait! Just happy to feel like I do right now and will continue to wait for my special day. Please pray for me, my family and my someday donor’s family. -Heath

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7/14/18 - The Truth

Many of you have been following my journey since day one, since ECMO, but for those of you who haven’t started following until recently...go back in my blogs to the beginning. Go back to where I started and read thru my story before you read this blog tonight. I will summarize a little for those who don’t care to and say to look at this picture: 

This is me, Heath. I was dying, again, in this picture. There have been several times in my life that the odds haven’t been favorable to me. My friends, family, doctors...they struggled with the truth at those times. When you’re in a situation like mine, heart failure, the truth is you might not make it that day. That, that time might be the last time. It might also be the first day in the rest of your life, too. Know one really knows the honest truth of any situation when medicines and machines keep you alive. There is never a strait shooter, this is how it is, conversation to even be had because there are just too many variables. I just wanted to say all this to say no one really ever knows anything, ha ha. Seriously, though...my parents have been thru these days (like the picture above) with me and on those days all they want are answers. Why this? How that? What next? Etc... I want you, if you’re going thru a situation like mine or any adversity in your life really, to know that you can’t have the truth in the tough situations. No one knows the answers to your questions. Not the big questions. You will not know what will happen, you cannot plan for anything and you will be lost for a while. It’s ok. You don’t have a choice and you have to make due. You can make it thru. Look at me, my family...I am still alive and have died, been on life support and 140+ days later, me...this little baby whom hasn’t even been home, I have fought thru all of my adversities to go where? Into a blank future? I don’t know what will happen in a day, an hour or the next five minutes, but I know my life is worth living. I want to get thru this. I want to go home. I want all that and I have no answers. My family doesn’t know how, why or if for anything that has happened. You know what, though? That’s okay! I have found that my Turth is my now. The truth is today, this moment...look at me: 

We have learned to live in the now (as people say). We live second to second. This second, I am thriving on my Berlin Heart LVAD form of life support. Still trucking along into my blank future and still excited to paint the pages. We still have no answers, still have fears and still are waiting for my heart gift to arrive. Today, I feel sentimental because I’m doing this, I’m fighting this. Maybe the truth is that there actually is an end to all of this. Maybe it will be good? I feel this now, because I look back at pictures of what I’ve overcome and we all just can’t believe I’ve made it this far. A visual example of how much stronger I have become is this...my old medicine “wall”...I was on all of these at one point:

And today, my girlfriend brought in my new medicine “wall” and this is what it looks like:

It was emotional to compare them. Maybe my truth is that your prayers are working, that I am meant to live thru this all and that I will go home someday? Seeing this tiny medicine rack today maybe us so happy. I’m feeling stronger, free-er and more like a baby every day. I snuggle Mom and Dad (and occasionally a girlfriend), I sit up and turn my head on my own, I play...I may even learn to do more soon. I think the truth right now it that we are thankful. Very very, whole-heartedly grateful. I love my life and I’m going to win this battle. I’m just going to snuggle my way through. That sounds perfect! - Heath

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7/13/18 - Sir Smiley Pants

Today can be summed up in pictures for the most part: 

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As you can see, I wore clothes and had a wonderful day today. All smiles most of the day. I was smiling at my girlfriends. Smiling at the doctors. Smiling at my therapy friends. Smiling at a few people who stopped in to visit me. Smiling at Mom. All smiles. Real smiles...for what is the first time in my life, the smiles today didn’t come from drugs. Not from Morphine or Adivan. Just smiles from me. Smiles from Heath. I think I have a nice smile. The best smile in the whole wide world my mommy says... 

After a bunch of visiting, a snuggle session with Mom and a therapy session too, I took some time to play. My mobile critters were looking frisky and I batted them around. It was so much fun and made me giggle. I can spin them and they go really fast. My physical therapist saw me play and was so proud of me. She asked mom to bring in a play mat for me. I think it could be fun. I would love something new. I don’t like to lay flat on my back though, so I’m not sure I would like it much? Maybe I can sit up in my Boppy under an arch of toys or something? We will come up with a kool idea. Laying flat just bugs my breathing because my vocal cords aren’t in great shape right now. Anyhoo...I was fun to play. I’m learning so many new things lately. Now that I am off of sedatives, I can have a lot more fun. It’s safe for me to play now and that is great. 

I’m actually off of all my heart medicines, all my other medicines almost, too! It’s so wonderful and crazy! I have never, a day in my entire life, have been off of sedates, heart meds, etc... It’s so hard to even fathom for my family. Crazy. Good though! I’m excited to start my life. Live a little off of drugs and semi-normal. Need my heart gift to come now. Come soon, while I’m feeling well. Come soon so my body is better after surgery because I go into my transplant day strong. Come soon to help me avoid the stroke risk that comes with my Berlin Heart. Come soon so my family can be together and so I can go home. I long for home. - Heath

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7/12/18 - 140 Days Old

Wow! Today I am 20 weeks old guys! That’s 140 days in the hospital. I can’t believe it. I’m so proud and thankful to have made it this far. My journey has been a rough one. Still here, still fighting. Just like before. 

I had a wonderful day. Finally. Big poop, new sheets and grossed out Bro-dude to start the day. Mom came just in time, after I was cleaned up. I suppose, if anything good were to come of my stay, besides recovery obviously, getting to skip some explosive diaper changes would appeal to Mom. I know she would be more than happy to clean me up and care for me; it is a nice perk though. And no buying diapers...ha! I over heard Mom and Dad joking that they probably cost $10/diaper in here...they are probably right about that. Hospital life is expensive! I guess I’m an expensive baby. A $10 Million dollars and counting baby I am told? I don’t understand money, but it sounds like a lot. Speaking of that, money, I was named after Heath Barkley on the old western show Big Valley. The actor that plays Heath in the show is named Lee Majors. He also played The Six Million Dollar Man. So, now I should be The Ten Million Dollar Man? Ha! That’s great. I like it. Anyhow...I got cleaned up just as Mom came in. We got situated in the recliner and started a long, needed snuggle session.

We haven’t gotten to snuggle much thru my journey, but today (for the first time ever) I looked at my Mommy and touched her face. It made her cry. She smiled so big at me and I made sure to smile back. I felt her cheek and her nose and her lips...it was a new experience to feel someone’s face that wasn’t my own. Her skin was soft and warm like mine, but it wasn’t mine, so it was neat. She held very still for me so I could figure things out. I looked at her, staring right into her eyes like I always do. That’s how we visit until I learn to talk. Hands and eyes do all our talking. So happy to get to sit up close to her. It was the first time I’d been that close to her, too. Usually, when Mom or Dad hold me, I just sit in their laps on a pillow. It’s nice, but after today...I don’t know. I got to be safely right up close to her and feel her breathing and her heart beating. She kissed my forehead a bunch and we napped together for hours. It was the best day we have ever had. ❤️❤️❤️❤️

Before the day was over, we put up a new thing for me to practice my hand-eye coordination with...a giraffe toy! My angel Ellen sent it to me a while back and I wasn’t strong enough to play with it until now. I’m excited to kick and swing my arms at it and try to move it. It will be pretty fun I expect. We hung it on my mobile arm for now. I wasn’t in a playing mood after snuggles with Mom and actually feel back asleep. It was needed. I will play tomorrow.

I will show you a funny picture in a minute of my little pony that I love so much. Someone (one of my nurse friends) keeps dressing her up funny. Today she was a Rambo pony, the other day someone put her in a pony sleeping bag...it’s so cute and makes us laugh. Before the picture of her, I just wanted to say good night. Thank you for the love, prayers and unconditional support. You’re all the kindest, most generous and amazing family to me. Thank you for helping me along my journey; one day at a time. Hugs! -Heath

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7/11/18 - Teething

It seems like I’m starting to get thru my days a little easier; as far as the withdrawals symptoms go. I still had an emotional roller coaster kind of day. Smiley one minute, then upset the next. I really can’t control it. This is all getting better though, we think. I needed some help thru my emotions, only a few times today; getting Morphine to help. So, here was my day: 

It started with a good bum-session. I lounged in my Boppy and watched my mobile. Mom brought in a new Boppy pillow cover so she could wash my other one...we had a “blow-out”. Eewww... Thats what happens when you get milk for food, ha ha. I really should have been napping, but I just sat quietly and relaxed; dozing in and out. Eventually, I was a little restless, so my Mommy put her hand behind me and rocked me a little. I like it and it helps when I need to calm down. She read to me your messages and we visited. 

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I am dealing with the medicine changes, as you know, but guess what? I’m teething now, too! I like chewing on my hands and almost anything else, too. No teeth yet, of course, but something’s changing in there! I’ll keep you posted on that. I do hope this new development doesn’t add to my troubles, but for now, I am very much enjoying drooling all over everything and chewing on things I shouldn’t. I’m such a funny little man!

Hm..what else? Ooohhh oh! I got a new blanket from my aunty and I tried it out today. It was perfect for my afternoon comfy time. So soft and snuggly. She made it all by herself and knew to make it with lots of holes for me! Lots of them for my toes to pop out and wiggle thru! My favorite...he, he! So I snuggled in, covered up and got comfortable to spend time with Mom and play with my mobile. I’m still working on learning to reach, bat my mobile critters and grab things. It’s a lot of work learning new things. 

So, another good day. I am working so hard, guys. I promise. I just need my heart gift to come soon. Please keep praying for that. Here’s our favorite picture from today. It makes us both feel good looking at it, because it looks like I’m comfortable, happy and kind of looks like what I could look like if I was home. I’ve never been home, but I dream about it every night. I want to go there and be with my family so bad. It makes us sad...so I’m just going to stop talking. Tonight, I will try to sleep more. I need it. Dream Sweet, Heath. 

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7/10/18 - Working Things Out
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Two boppy pillows are so much better than just one! I loved sitting up and snoozing like this today. It was very cooshy and cozy. Just what I needed to help me calm down and rest. I am struggling a little with the medicine changes again today. It’s hard for me to settle down once I get worked up and I don’t know why? We know why but I don’t know “why”...if you know what I mean? It’s hard for me to sleep soundly right now, so I was so thankful to get in a good nap this afternoon. My girlfriend and Mommy sat with me until I dozed. Mom never left me, stroking my head softly. We needed each other today. She struggles with all this and having to leave me every day to go home. She tells Dad, but I’ll never know how she feels. I love our time together though. We are getting thru this one day at a time. It’s hard. I am almost five months old already. I’ve been in the hospital my entire life...138 days. We are thankful I’m alive and we are still a whole family, though. I’m going to beat this and go home one day. We will get thru. Im a fighter...and a snoozer...ha, ha! 

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I had a short happy moment this afternoon, waking up for just a few minutes to turn to a new position. I was smiling because of medicine again, but I was smiling and that is all that mattered in the moment. I reached out to grab my mobile today and was batting at the little critters, just smiling at how good I was doing. It made Mom smile, too. She sent videos to Dad and he told me I was doing good and to keep it up. So I did. I played. I am just learning this “play” thing, but it’s fun. So, here are some happy pictures from my emotional roller coaster day...we want to remember the smiles, don’t we? 

The adjustments made to my Berlin Heart really helped my edema; my face and body weren’t as swollen looking today. I felt better too. Getting thru the withdrawals and delirium as best I can. I think a few days and I’ll feel more clear minded. We hope! So, all-in-all, today was better than yesterday. That’s what we want...just keeping stronger. Keep fighting. Kind of just rambled tonight for the blog, but it was a weird day, so it’s called for. I’ll talk to you tomorrow. Please keep me in your thoughts and pray I have a peaceful night. -Heath

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7/9/18 - Fighting My Demons

First of all, last night and into today, I have been having pretty rough bouts of Delerium and what we have decided are Opiod withdrawals. I “wake up” out of a nap and without opening my eyes, begin to thrash about and cry. It takes everything they can come up with to calm me down and keep my numbers within a safe range. Sometimes, they don’t...sometimes my blood pressure sky rockets. That is terrifying to my family because I am on blood thinner medications for my Berlin Heart LVAD. When my blood pressure gets up high for extended periods, I am at an even higher risk for a stroke or another major event. I’m also more swollen looking today. Like I have edema in my face, arms and legs. It’s worrisome. We pray this delerium passes with the decrease of the heavy medications they are trying to wean me down from now and that I can be more comfortable. Being “addicted” to opioids and other medicines is no joke, but it is in the normal day-to-day for heart failure patients like me. The staff here will help me get this figured out, but it’s hard for my family to watch. Hard for me to go thru. Hard for the care team to see, too. Every patients body reacts differently to situations like mine... I did have a nice period thru the day this afternoon. Mom and I played. I was looking into my mirror and hitting the little fishy that was dangling underneath. Mom and my girlfriends were very impressed. I’d never shown them that I could do that before...like, that I could really think about doing something and then repeat it. I would look at the fishy, raise my eyebrows and concentrate. Then, I’d lift my hand up and swing it out to hit the fishy and then do it again and again. It was really fun, actually! I think I hit it like ten times or more? I did something new and everyone was very proud of me. I was very “high” on medications all day today and as sad as that makes my Mom, at least I was “happy” enough to play like that. 

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So, I’m not sure what tonight and tomorrow will bring. My family, caregivers and I, are all stressed out today. Ready for some good times, soon! In other news, I had another ECHO today and things initially look good. I’ll learn more tomorrow about what they saw from that. Do you want to see my heart? It’s kind of neat. There are four chambers. The chamber that is not working for me, is the bottom right dark space in the picture. That is my left ventricle. My left ventricle is all stretched out and damaged. We don’t know how or why. I wasn’t getting the blood my body needed and I wasn’t doing so hot a week ago. So, they hooked me up to this a Berlin Heart. A Berlin Heart is just a name brand for something called an LVAD (Left Ventricular Assistance Device). That’s what I needed to be somewhat normal functioning...left ventricle support. So, now that I’m getting the support from my machine, I have pretty good blood flow and semi-“normal” heart function. It’s a lot more complicated than that, but that was a run down in layman’s terms. Anyhow, heres a picture from today: 

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Anyhow, I am exhausted and haven’t slept well for 24hrs. I need rest and am going to try so hard to have a good night. One of my favorite girls is here for the night to help me, so we will get thru this. They will probably do some medication adjustments, make Changes to my Berlin Heart settings, and try other things...the care team is great and will figure me out soon. They care about my safety. Please pray for me, my family and my someday donor’s family, too. - Heath

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7/8/18 - Secrets With Dad

I had a wonderful day today. Mom held me and we cuddled a couple hours. It makes her feel so happy and I enjoy the lovey time, too. I was very content and cozy. I don’t get to really snuggle right up to her, because with my cords, the Berlin Heart LVAD and all the things...it just doesn’t work. I sit on her lap though. Usually, I sit with my Boppy under me; she touches my head and toes and talks to me. If Dad is visiting, he pulls a chair up next to us and visits, too. It’s not how I’d normally be held, if I was a normal baby, but I think we make this work for us pretty well. This is our “cuddles”: 

After my snuggles, when I was back to bed, Dad and I visited. We had an in-depth discussion about my girlfriends. We keep some things just between us and don’t tell Mom, so we don’t get in trouble with her. Dad and I...we have a code. I think we will have a lot of good talks as I grow up. I’m excited to do things with Dad. He likes to hunt and fish, make stuff with his hands and help with the farm. I’ll be like him someday, I’m sure. 

After a good long visit and lots of smile and laughs, I was able to just relax. I felt pretty good today. I had a big belly full though and needed to you-know-what...I did eventually and it was gross, ha ha! But, hey! I felt great after. I didn’t have too much change medically speaking today. The care team went down on my medicines some more. I’m also getting more milk. I know tomorrow they will be doing another Echocardiogram and also deciding on a plan for my damaged vocal cord. They’d like to try to fix that this week. I’ll be sure to update you. 

Another short blog tonight, but that’s okay. There will be lots to write about tomorrow. Thank you for the prayers. Good night. Talk tomorrow. -Heath

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7/7/18 - Cuddle Time
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Today doesn't need a long narritive...I saw Dad, who came to visit me today, and I sat with my Mommy and cuddled for hours. It was a wonderful day! I just want to share some very handsome pictures with you today. Please keep my family in your thoughts and prayers. Pray for me to stay "ok" and that my heart gift comes very soon. Also, pray for my someday donor's family. Thank you. Good NIght. Love, Heath

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7/6/18 - Re-Extubation

Today was a big day! A lot of things are happening very, very quickly in my life right now. The Berlin Heart LVAD seems to be doing the job, helping my heart work. I think we did do it during the correct timing in my transplant journey; while I was still stable-sick. We are watching the right side of my heart (the side the Berlin Heart LVAD doesn’t help) to be sure it is keeping up with the new workload. So far, so good, but we are being cautious. I started the day off with all kinds of smiles today for my girlfriends. They loved it. I opened my mouth and smiled the nicest, biggest smiles I could muster. They ooo’ and aw’ at me. I love it. I had a lot of business to attend to today and had to get too it, so I took a quick nap to get them to go. First order of business after my nap was the chest drain tubes. The care team came into my room and after a few snips and slips, all three of them were removed. Three less tubes! Yay! They were no longer showing drainage anymore so, it wasn’t necessary to leave them in. I seem to be healing well post surgery. In fact, my swelling has gone down significantly. I’m so thankful. 

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As you can see by the picture, I had more business to attend to after the chest tubes were removed. I went to OR and they removed my NG and put the NJ (the feeding tube that goes thru my tummy, strait to my small intestine) back in. The care team wants to help decrease the chance of aspiration by doing feeds via NJ instead of NG. My right vocal cord is damaged from my medical journey and it poses a risk of aspiration if I were to urp up my feed at any point. Better safe than sorry, so they went ahead and got that done. I had to go to the OR because when they normally place an NJ tube, they use a magnet and machine to make sure the tube goes to the correct place, but with all my dressings from my big surgery, it wasn’t going to work out. In the OR, they could use an XRay-like machine to check to see where the NJ tube was sitting. It seemed to all work out well. Starting feeds this evening and am so thrilled! 

You may also notice, after the NJ was placed, not only did I get my big-boy-bed back but, I also got myself extubated and I am very happy about it! No more annoying, uncomfortable, infection holding ventilator tube in my nose! I’m able to be re-extubated, now, because the Berlin Heart LVAD has been supplying my body with the the blood supply it is supposed to be getting..ie:my lungs. So, I should be able to do the work of breathing on my own. If all goes well, I’ll get stronger at it, too. Right now, it’s a little rough, but I can do it. My throat is a little sore, my voice raspy...but, with time I should be able to cry again, my vocal cord will hopefully heal on its own without surgical help and I’ll continue to improve overall. If you want a good laugh, imagine me with a duck voice and hiccups today 😂

Over the last couple days, I’ve been trying to eat the IV on my left hand. I get it up to my face and put it in my mouth. So, my girlfriends kept putting a bean bag on my hand so I wouldn’t keep doing it. Today, Mom put a teething mitten over my hand and the IV. The mitten is big on me, which makes it perfect for going over everything. I think I like it? I spent a good amount of time today licking the bumps on the ridged end of the mitten. They thought I was funny. I was serious about it though. It was new and I had to check it out. So, anyhoo, I enjoyed the new mitten and the tube changes today. I had such a pleasant day. Partly, because they have weaned so much medication off me, too. No more Epinephrine and down on the Milrinone, diuretics and sedatives. It’s making me feel so much better. I pray this up-trend continues and that nothing bad happens. My family has never had anything go “well” when it’s come to my health and they are proud and happy for me, but very cautious to celebrate. I still need my heart gift to come very soon. Please keep praying for that, for me, please. Pray for me, my family and my someday donors family. Thank you for all the sweet messages that have kept me strong this week. Hugs! -Heath

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7/5/18 - 19 Weeks Old
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Mom and I held hands, as usual, as I watched my mobile. Yes, I opened my eyes! I was able to be awake and pretty comfortable today for my nineteen week birthday. It was such a relief, after how much trouble I had the other day. I am happy to be feeling better. My numbers were good today. I was having something called PVC’s (premature ventricular contractions) frequently today. That seemed to be as a result of being a bit “dry” from my diaretics. PVC’s aren’t necessarily bad, but they can warn the care team of other things happening in my heart. So, just to be proactive, the care team gave me some Albumin. Albumin is the main protein in blood plasma; it plays a role in many functions, including maintaining pressure in the blood vessels and transporting substances, such as hormones and medications. Albumin binds to many of these substances, including hormones and some drugs, to help them travel through my body. So when my albumin levels are low, the blood may not be able to transport essential materials effectively. It helped. I’ve gotten it before. My doctor also came in and worked with a Tech (whom was doing an Echocardiogram on my heart) to adjust the setting on my Berlin Heart LVAD machine. They adjusted it to allow more blood to remain in my left ventricle, than the previous settings allowed. It should help with the PVC’s, too. Well, that’s the theory.  

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Mom was a little worried that the ultrasound wand would hurt me, but it felt okay. My body isn’t as swollen today, as it was yesterday. I only have a little bit of Edema in my legs. Mom massaged my arms and legs for me to try to help. I liked it. It felt nice. She read me your messages, then talked with my girlfriend a while. She said the care team decided to leave my chest drain tubes in another day. Maybe we would remove them tomorrow? My favorite doctor also stopped to see me. He said he was very proud of me and that I was doing a great job. He thinks we may be able to extubate the ventilator as early as tomorrow, if all is well. He also said he hopes to see me off of the heart helping medicines (Epinephrine and Milrinone) in a few days. My family can’t believe how fast things are happening! Hoping and praying this all works well! Like we said before, this surgery could have some amazing results for me if we can keep clots and stroke at bay long enough for my heart transplant gift to arrive. One day at a time. 

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Do you think I look better today? I’m trying hard to rest and heal up. I started getting milk again today, too! I’m so excited for a little milk in my tummy! Hoping to increase how much I get tomorrow. It will be nice to get to start weaning down on the sedation medicines tomorrow, too. I am very, very heavily medicated right now. The team was surprised to even see me awake, honestly. I’ve had strong medicines my entire life and am very tolerant. It will all work out. I’m sure I’ll have a long road ahead of my, post heart transplant, to get thru my addictions. Especially to Morphine. I hope I don’t have much trouble. Anyhoo...I better get to bed and rest. I have lots of healing to do. Thank you for the continued prayers. Good Night. - Heath 

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7/4/18 - Second Day Post-Op

Well, let’s start with last night...not good. The care team struggled keeping me sedated and comfortable all night. I would cry and throw a fit without opening my eyes; I kind of think I was delusional from all the medicines, but I can’t remember. It was a long and nerv-racking night. My blood pressure really scared everyone, because I would be upset and spike it. They were worried about me being hypertensive and the risks associated with that. So, after throwing many different medications at me and doing everything they could, they were finally able to help me settle. This happened a couple times, unfortunately...it was a long, stressful, scary night. Today, though, was much better. My bro-dude was very proactive about my PRN medications and on top of his game. I went thru the day with some slight awake periods, comfortably. When I began to get upset, he made sure I was taken care of. I did very good. Everyone was very proud of me. 

At one point today, I opened my eyes a little and looked at Mom while she rubbed my head. It was so nice to see her there. She’s always there for me. We held hands and I squeezed her finger to let her know I am strong and okay. Later, after I went back to sleep, I felt someone rubbing my leg and woke up to see my therapy girlfriend was there to give me my edema (swelling) massage. She does it to help move fluid around and help the swelling go down. My face and legs are where I have most of my issue from being post-op, so she concentrated there. I’m actually looking pretty good. My skin is a nice pink color, not so pale, like before. I don’t get the marbely looking skin when I get mad anymore. Now, I turn red when I’m mad. I wrapped my toes around her when she went to rub my feet, though...you know I don’t like my feet touched! She and Mom talked about about a little boy that was here, whom like me, had heart issues. He had two VADs and was able to be up and playing, doing therapy, when he recovered. I really want that; to be able to be out of my bed when my body has healed up enough. It will be so nice! So, I’m hopeful for that, after ease-dropping on their conversation. 

The care team still seems very happy with me and the decision to do the surgery. Mom was able to talk to my doctor for the week and discuss my future some, today. We decreased the amount of Epinephrine I have to get and went down on some other things. I was getting NO2 thru my ventilator to promote healthy dilation of my veins and arteries so blood can move throughout my body easily (it also helps prevent red blood cells from sticking together to create dangerous clots and blockages). They may wean that off tomorrow. I may also have the chest drain tubes (three of them) removed tomorrow, if all goes well over night. In the ideal world, the plan going forward is to get the Epinephrine weaned off, down on the sedatives, get off the ventilator and get bigger/stronger before my heart transplant comes. So, we will see how it goes! Hoping for the best. Please keep me, my family and my someday donors family in your thoughts and prayers tonight. Good Night and Happy Independence Day 🇺🇸❤️💥

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7/3/18 - First Day Post-Op

I made it a day out from surgery. My team, family and friends are all so proud of me. I’m proud of me, too. I think everything is going well. I’m very sedated. They weaned the paralytic this morning and by afternoon, I was wiggling some. Later this afternoon was a little scary, as I woke up and was very upset and the team had a difficult time getting me back sedated. I don’t really know, because I was so drugged up. I think waking up and being upset wasn’t a pain thing, but more like I was upset because I woke up and there are tubes and new things everywhere and I can’t move much. Mom hearing this happened was not good...she was in tears. She never wants me to be in pain or scared. It so hard, going thru all that I have. We are scared. Very scared. Yesterday was a long and emotional day for us. We are all exhausted.

Mom and I tried to be a little normal and stay calm thru the changes today. She sat and stood next to me, holding my hand like always. She was telling me all of your well wishes and prayers, and I squeezed her finger so she knew I heard her. I’m doing okay, all-in-all. The care team popped into my room randomly thruout the day, today. They told us they are still happy with my stats and physical appearance. I have drains in my chest and sides that help eliminate swelling by giving excess fluid and blood a place to go. I wasn’t too swollen, just some. Nothing like ECMO swelling! Thankfully. I don’t look too beat up, but over the next few days I may look worse before looking better. My chest has a grey absorbent pad tapped over the chest cavity insicsion. There are the three drains, two cannulas from the Berlin Heart and some wires all coming out of me. The wires are being used to temporarily pace my heart at 150bpm for a few days, until my heart is okay to do it on its own with the Berlin Heart. Everything is under gauze and taped down. The cannulas both have fabric-like tops that my skin is supposed to heal too and help to keep them very secure? It’s very weird. It’s like this:

I’m going to start showing some pictures of me. They will be hard to look at, so please be sensitive. Here we go...this is what the Berlin Heart part looks like (below). Blood churns around in this thing. There is an out valve in the right. That blood is leaving my heart. There is an in valve on the left. That blood is returning to my heart. The care team uses a flashlight, one an hour, and shine light into my blood to look for clotting. The clotting is the scarier part of this whole deal. I’m very high risk for clots and stroke now. Please pray that I never have a stroke. So, anyhow, the blood flows thru here. There is a clear tube that is running this gadget. It pushes and pulls air against a soft rubber membrane on the backside of the Berlin Heart, pushing and pulling blood...essentially “pumping”. It makes a soft ticking sound, kind of like a heart beat. 

The Berlin Heart cannulas aren’t ridged, but they aren’t super flexible either. Once I have healed up and am more comfortable, I should be able to move alright and be pretty safe with this attached. Right now, we are waiting to see how I recover. Taking things hour-by-hour. If all goes well, my body should begin to heal damaged organs, I should grow much better and better digest my feeds, and the plan would be to work toward extubation of the breathing tube. If all goes well with that all, I could have more freedom from this bed and even have the possibility of going outside for the first time! It’s all very exciting! Just praying my heart gift comes soon. This is only temporary, the Berlin Heart, but we hope I will be stronger for my heart transplant because we took this step and did the surgery. One step back, two steps forward kind of idea. So, here are the pictures of the new me: 

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7/2/18 - My Berlin Heart LVAD Surgery
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My Mom came in extra early today. She and my girlfriends figured out how she could hold me. It was important today, more-so than other days. Today was the last day I would be whole, new, untouched...she was afraid she could loose me, too. I’ve had other “operations” for ECMO and various other things, but today’s surgery was much more scary (I’ll explain more in a little while). So, I sat in my Mommy’s arms and we snuggled for hours until I had to get ready to go to the operating room. 

Before I left, we took a lot of pictures. I’d never have a scar-less chest after. It’s horrifying to Mom and Dad that the doctors were cutting me open today. The care team took me back to the OR around 11:30am. I was in surgery many hours. They sedated and paralyzed me. My heart was going to be stopped, so my body was supplied blood using a by-pass machine. A by-pass machine; Cardiopulmonary bypass (CPB) is a technique that temporarily took over the function of my heart and lungs during surgery keep the circulation of blood and the oxygen content maintained. It was scary to think my heart wouldn’t be beating. Ugh, I can’t even think about that without feeling scared, but the team knew what they were doing and we trusted them. I had the Berlin Heart installed to the left side of my heart. It will do the work for that left side of my heart by circulating/pumping blood. It will help my heart work much more efficiently, thus much better supplying my body with the blood (oxygen and nutrients) it needs. The surgeon hooked this device up to my heart...one tube (cannula) went into the bottom of my heart and one to the top. One cannula will be the “out” and one the “in”. My heart will still hold blood and do it’s thing, but this device with help it out greatly. After the Berlin Heart was all sewn in, the team slowly weaned me off of the by-pass machine, letting my now beating heart slowly take over the workload. The team was concerned and monitoring my left side, obviously, but the right side of my heart was another major concern. Sometimes, when they go in to do just the left side Berlin Heart, they see that the right side of the heart is not able to keep up. Lucky, in my case (so far), my right side seems to be handling the blood flow and workload well. They were very happy about that and were able to wean me off of the by-pass in a good amount of time. After which, the surgeon went ahead and finished “cleaning up” inside my chest cavity. They had questioned whether or not I should have my chest (the bones and skin) sewn back together right away or not. Sometimes, with surgery like this, the team may choose to keep the area open for swelling issues, etc... In my case, though, the team thought it appropriate to close everything up right away. Mom was happy for that. So was I. It sounded so barbaric, leaving my chest in-repaired. Once this was all thru, they gave me some time to recoup and stabilize, before wheeling me back to my room. It was 7:30pm. The team was very happy with the outcome, so far. Please continue your prayers for me and that I recover well. Good night. Love, Heath ❤️

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7/1/18 - Tomorrow
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Tomorrow is the day of my LVAD/Berlin Heart surgery. I hoped to rest up and relax with Mom and Dad today, in preparation, but the day did not go as planned. I am trying to hard to tell everyone that something isn't right. I try to yell and scream it out! but, my body can't take the effort and i end up getting medication to settle my ailing body. It's hard. I can't talk yet, to tell everyone what I feel, so I ended up needing a lot of medicinal help to get thru my day safely. Something isn't right. My numbers show us that, the x-rays of my chest show us that and so does my demeanor...i can't help but be upset lately and I am not even completely sure why? So, after a rough day today and the last two weeks, we are feeling more confident that this is the thing (the Berlin Heart) that will help me get safely to my transplant date. I can't keep having rough days like this and hope to survive my situation. We are very afraid; my family and I. The surgery tomorrow is a big one and I just pray so hard that I am strong enough to do this. That I am strong enough to make it thru the surgery, the recovery and the wait for my new heart, too. This is all coming down on us so hard today. I am going into this surgery with ultimately only two outcomes for my future. The first outcome; the surgery goes well, as planned and I recover well and am able to wait longer for a heart transplant. I wait for my heart and have no strokes (or at least debilitating ones) and I am okay. Or the second outcome: my surgery doesn't go well. A few things can happen with that...I can get a second Berlin Heart on my right ventricle, I could end up on ECMO, I could have a good surgery and recovery and end up having a bad stroke and end up brain-dead and no longer be eligible for transplant, and the last thing...I could die. So, this is extreme, but it is my reality. My family and I are confident that the doctors have helped us make the best decision for my situation and we hope for great things to come of it...like the ability to wait longer for a second chance at life; my heart gift. I'm trying to get some rest tonight and go into tomorrow confident for the best outcome. My family is distraught over the whole ordeal, but we are doing out best to hold it together. I am their world and I promised them a long time ago that I would fight with everything in me to get thru this and come home. I am strong. I am brave. I am a heart warrior. Heath The Heart Warrior? So, please say an extra prayer for me tonight. I need so much love to get thru this. 

I need a couple more prayers tonight, too. As you may know, I have made some great new friends thru my journey in the hospitals. I have a friend just down the hallway that could really use your thoughts tonight. Please pray for clarity and hope. Pray for her to get thru her adversities. And also, tonight I lost a friend. A little girl that is just a day younger than me and with a very similar situation, lost her battle today and went to heaven. Her family has helped us thru some very difficult times with my journey and we hope you will help us pray for them and for their loss. We are all a family, you see, all of us in the hospital here. Whether we have talked much or not. We have met some amazing families that have especially helped us thru my adversities and try to always show we care and support one-another. No-one on the "outside" world will ever truly understand how difficult heart failure is and that's why we need each other. I think this is why I am writing my blog. I hope someday, someone will read my story and have something in it help them thru. I know that I am just little, but I promise, as I always have, to make a difference. So, I will fight my fight tomorrow and the next tomorrow and the next, until I come home. Thank you for loving and supporting us. I have to rest up for tomorrow now. Love, Heath 

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6/30/18 - Sick Of Being Sick

Dad was here today to see me. It made me so happy! We played with my mobile together. He blows the little mobile animals so they spin really fast and I love watching them go. Sometimes he pretends to eat my mobile animals and it makes me giggle. He’s so funny. Mom was helping me box with my hands and dad was holding my pony toy up for me to kick. I had a great time. I’m getting good at moving around and all of the things.

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I wasn’t feeling the greatest today, but I was getting medicines to help. Morphine is hard on me, but it’s been a friend of mine my whole life. I barely get thru a day without it, nowadays. After playing with Mom and Dad, I was feeling restless and needed to change positions. My bro-dude is here to help me out all weekend, again, and he can usually get me comfortable on my right side...so, we tried. I just couldn’t do it, though. I got myself worked up and the more worked up I got, the more I just lost my mind. I needed Morphine to help me get my numbers back down to normal ranges, ASAP. Sometimes, I just can’t relax on my own and since my heart can’t take it, I need medicines to help. It was a good day for the most part, even with the small meltdown p, though. I did have to go back onto antibiotics today for another “dirty” culture that came back from my labs. This time, in my breathing tube. I hope it won’t mess up my surgery date, for the Berlin Heart. Mom and Dad were able to talk to another Doctor friends today, about the procedure. Mom is still very disturbed and upset. It’s hard for her to think of anything happening to me. The surgery is a big deal. They have to cut my chest wide open and do surgery on my heart to install this new pump set-up. It’s scary for us. I’m brave, though. I’ve been thru some pretty difficult things in my life, this being the most...so far. I think I will be very sore from them opening my chest up. I will be uncomfortable. I don’t like changes, as you know. Hopefully, after a few days though, I will be able to feel better and the machine will help me feel stronger with a little time. I wish my heart gift would come this weekend, though, so I could just avoid the surgery all together. That would be such a blessing. I’m so disappointed. We all thought that I’d have my heart gift by now. I’ve been on the waiting list for nearing 100 days as a 1A listee. This is all for the birds, let me tell ya’! I’m so sick of being sick. I’m not going to go into detail about the Berlin Heart and all that entails until Monday. So, watch for that coming up if you have questions. 

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I ended up sleeping the rest of the afternoon. I needed it. Hopefully my surgery goes well Monday and I am able to recover quickly and strongly. If I do, I could come off some medicines and if I’m lucky, there is even a possibility of the ventilator being taken out again. This Berlin Heart is scary, risky...but we think the benefits will out-weigh the risks. At least we hope they will. So, I’m just hoping and praying for the best. Please pray for me, my family and my someday donors family. Thank you. Good Night. Love, Heath

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6/29/18 - A Berlin Heart

Today started out a nice day. Mom and my girlfriend gave me a good, long, warm bath. I loved it. I felt so fresh and clean after. My hair is getting pretty long and we can make curly cues and a mohawk! I have strait hair, but when it's wet, its fun to make it go up and curl around. My eye feels a little better today, too. I was happy about that. It was nice to have my stickers off and get to rub my head and eyes with my hands while I got cleaned up. I am so interested in how my face feels. It's such a weird thing? A head. It is like a ball on top and is smooth and hard. Then, when I run my hands down lower, my eyes and nose are just suddenly there and they are like weird wet holes. I love to put my fingers in my ears, nose and mouth. It doesn't gross me out. Mom doesn't always like when I explore, but i don't care. I do it anyways. Here are some pictures from my bath. I was SO cute!

I had some Morphine, just before my bath, and was in a good mood. We thought it would be a good idea to take advantage of how calm I was and see if sitting up with Mom would be a good idea. We got up and all situated, but I just couldn't get comfortable with her holding me. So, we gave up and I just laid back down in my crib where I could be comfortable. Mom and I still had a nice time visiting. She looks at me like I'm the best, most special person in the whole wide world. It makes me feel so good. 

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I have to tell you the bad news now... As you know, I've been having some struggles recently. It's been a ride, let me tell you. I don't know which way is up any more. One day, I am down and out with Pneumonia, high heart rates, high temps. The next day, I am smiley and my numbers are good. One thing that has been getting worse consistently, though, is my heart. Specifically, the pressure in my heart. The care team is very concerned about how my heart failure is progressing. It could be just time getting to me or the fact that I am growing up and getting bigger (my body is asking for more than my heart can do). My kidneys, liver, lungs, etc...all demand a lot from my ailing heart and when they can't get what they demand, they don't function well. So, to prevent further damage to my other organs and to prevent an emergency situation, we are going to make a big change. This big change will hopefully keep me eligible for a heart transplant, too, by helping to keep me in the condition I need to be in. 

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We plan, on Monday, I will go to surgery and get a Berlin Heart. A Berlin Heart (pediatric ventricular assist device) is a mechanical cardiac support system for critically ill pediatric patients suffering from severe heart failure; like me. The device is designed to support my heart/body until my heart transplant happens. They call that BTT; bridge to transplant. The device takes over the heart's work of pumping blood to my body (in my case, just my left ventricle for now). Since it helps more efficiently supply blood to my body, it should help my organs to function properly and even help improve them. They say it can make me an even better candidate for transplant because it can help my body be stronger. It sounds like ECMO, in some ways, but it is very different. A Berlin Heart is something designed to provide long-term support and help me get to my transplant date. ECMO is ment for more short-term support. The Berlin Heart is smaller and I should be able to move around and not be sedated/paralyzed, like I was on ECMO. If all goes well, while on the Berlin Heart, I may be able to come off of some medicines and maybe even get the ventilator tube out. That would be a good thing. It's not all rainbows and unicorns, though. I will get worse again, before I get better. I will have some recovery to do after this surgery. It will be hard and I am scared. My family is scared. There are also, risks that the Berlin Heart brings...the obvious risk of infection, increased risk of blood clots, and one of the scariest risks being the 1 in 5 chance of a stroke per patient statistic. That makes my Mom cringe. One of her worst fears in all of this, the life I'm living, is that I won't get to be my "own man" someday. She prays hard every night that I won't end up dependent on them or anyone else thru all this and that I can live my own life, happily, someday. So, Monday, I will touch base and fill you guys in on everything in much greater detail and let you know how my surgery goes. Please say extra prayer for me this weekend. I will need the extra love to get thru this adversity. Good Night. - Heath

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