6/17/18 - Father's Day

I was a little distraught looking today, but when you mix Morphine and a deep sleep, you get this type of hair do. Ha ha! I was super zonked out. I slept on my right side, my "bad" side, the majority of the day today in various positions. That is because my Bro-dude was here to take care of me and he doesn't let me get away with much, so I gave in and settled into it. Mom was super excited to see me laying this way. She always worries that I won't be as strong with my left arm because I'm always laying on it when I'm on my left side. So, seeing me punching and rubbing my head and ear with my left hand today made her feel pretty proud of me. 

Not a very flattering picture of me, but I wanted to show you the change we made. No more NJ tube (the one that skipped my tummy and went right into my gut)! I only have the NG (tummy) tube now! So, that means I get fed in my tummy, again. I've been doing good with it, too. With heart babies like me, one of the hardest things we have to deal with is getting fed. Most times, we can't handle the work and it becomes a problem. Luckily, I've been able to handle feeds pretty well so far. Hoping to keep it up! It will make life much easier after my transplant if I do. 

I also wanted to show you this...my hairy shoulders! Everyone says I'm a super hairy baby. The doctors say it's just hormones and will go away, but the men on Mom's side of the family are all big, burly, hairy guys. So, it will probably stay! It's okay, I'll be extra manly. 

Well, back to today's business...Father's Day! My Dad and I had a wonderful day! My girlfriend and I were able to make him a really neat gift last night and he loved it! I was glad! I also wanted to give him an extra special gift by working super hard on my numbers today to give him a great day. He was so proud and relieved that I felt better. The antibiotics change from yesterday really has made a difference and I am starting to feel better. Thank goodness! Do you like the art we made for him? I thought it was pretty cleaver!

Today was the best day I have had in a week and it came just in time. I'm so glad I got to spend the day with my Dad (and Mom). I need to keep getting some rest now. Gotta' get better for when my heart comes! I know it's coming very soon. I can just feel it. Good Night. Please keep me, my family and my someday donor's family in  your thoughts and prayers. Happy Father's Day to all the Bro-dudes out there! Happy Father's Day Dad! I love you a bunch! - Heath 

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6/16/18 - Boxing Gloves

Dad came to see me today. He and Mom came into my room just as I was starting to normalize. I had a rough morning, again. I don’t feel well. Not nearly as bad as the last few days, but it wasn’t the morning I had hoped to have. Thankfully, today and tomorrow I will have my Bro-dude here to help me. There are many nice nurses here, but I’d much rather have a familiar face helping me thru something as tough as this. He is the best. We work really well together, fighting these Pneumonia symptoms. He makes sure to stay a step ahead of the game. With medicines and ice packs, I think we’ve got things pretty well under control. I even wore my boxing gloves today to show this Pneumonia who’s boss (Ignore the red lint on my nose from the gloves, ha ha! I like to rub my face and it’s making my face tape turn red)! The care team got cultures back from the lab today and they switched up my antibiotics after learning the new results. Hopefully, the antibiotics will do the trick and help me get rid of this pneumonia. Praying hard!

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Anyways, I visited with Mom and Dad, trying my best to relax and keep my numbers good. I hadn’t saw Dad all week and wanted to impress him by feeling better and wanted to give my Mom a stress break. They have been so worried about me. After I settled some, they got all excited and asked to measure me. I am about 23” long already. I think I’ll be tall when I’m big. I stretched out to do that and of course, posed for pictures. I don’t feel very good and don’t have “bright eyes” Mom says, but I’ll get better soon. I have too! Being sick is a risk to my transplant. I can be too sick or too healthy...the transplant list and everything involved is so complicated. Just pray I stay stablish, like I had been, and that my precious heart gift comes very, very soon. 

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I watched TV with Dad and watched him eat a pretzel. I would have licked it if he let me. It looked good. I enjoyed the time with him and the puppy show. Then, I fell asleep and rested the remainder of the afternoon; my stats all in good ranges, thankfully. Hoping to have a good day tomorrow for Dad’s first Father’s Day! Good night. - Heath 😴

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6/15/18 - 80 Days

First off, Thank You! so much Wendy and everyone who came to the “Mommy (Daddy) & Me Dance” fundraiser for me tonight. You will never know how much your kindness and support means to our family. 

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Now, back to my day...another rough one unfortunately. It went kind of weird. This morning, just like I had the last three mornings, I had a bad fever gain on me again and my heart rate was higher than it need be. My nurse friend helped me get the numbers back down with medicine, Ice packs and time. I was wide awake most of the morning, but I wasn’t well. Feeling feverish is not pleasant. Mom held my hand and talked to me; reading me your messages. It was nice to be able to see her and know she wouldn’t let anything bad happen to me. She promises me that every time I have bad luck. I sure seem to have a lot of it. I get scared sometimes. My family and friends have told me that something good will come of all this one day. We talk about that, too...my future. I’m not sure what I’ll do with my life yet, I am just little if you remember. Sometimes we joke I’ll be a Cardiologist. I wonder if there are any cardiologists in my hospital that have heart transplants themselves? We will have to ask. Mom and Dad have something special started for me when I get bigger. We will talk more about that after my heart gift comes. 

Speaking of a heart, today is my 80th day waiting. I hope my gift comes soon. Lord knows I need it too. The wait has actually gone fairly quick. Time is weird when you’re in the hospital. Sometimes, time goes slowly. Like, when I am getting thru a hard day. Other times, time goes by fast. Like, when I think of how long I’ve been in the hospital already. Four months has felt like years at times and seconds other times. It’s easy to “get lost in it all”.

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Anyhow, I ended up feeling pretty comfortable mid-day. My fever finally had come down under 100*F and I was much happier. Still awake and restless, but felt a smidge better. Mom helped me go “Facebook Live” and say Hi to the friends going to the fundraiser tonight. It was kind of fun, but I was missing my shows because Mom had to hold her phone up for me to say Hi. I like people. I like TV. It was a tough choice. Ha ha! I started to give everyone a scare not long after we hung up with my friends. My heart rate had been sitting around the 200’s for a long while as I was just resting quietly... and my fever began to climb up, regardless of what my nurse was doing to help. My skin started to turn that scary marbley color and my respiratory rate was very high. I ended up getting sedated and packed with cold ice again, for the second time today. My nurse friend invited the doctors and care team to come visit and discuss what to do next. They held my feeds a short while and ordered another EKG to be done to look closer into the Tachycardic periods and make sure things looked acceptable. Haven't heard what that came up with yet. I don’t know exactly what the plan is for me over the next couple days, as I fight this pneumonia, but I do know I don’t want to do “this” every day. Today was the forth day I’ve had these high fever, high heart rate periods and they are exhausting. Hopefully the antibiotics begin to do their job. The team has also ordered regular cultures to be done until this has cleared to be sure that nothing is missed or gets worse, but with the extra blood draws comes the almost imminent need for a blood transfusion. I have gotten tons of transfusions during my time in the hospital so far, but with each new transfusion comes the risk (I’m not sure this is the appropriate word) for new antibodies. More donor blood in my system, more resistance, lesser and lesser chance of taking “any” heart...basically, getting blood transfusions makes my body more picky. Usually the hospital will split up donor blood (because I’m little and only need a small amount) and give me blood from the same donor, when needed, if possible. That’s a little thing that I think is pretty smart. I’m confident the care team here knows what they are doing and what’s best for me thru all this though. There sure is a lot to go thru in my head though. My life is nuts! I just want to feel good, get healthy and go home for the first time ever.

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I’m going into night time feeling okay. I’m exhausted from along day. My body worked pretty hard. One of my special girlfriends is here with me all weekend and will help me rest up to feel better. I hope tomorrow is better. I’m going to try very hard to get a good nights rest and go into tomorrow strong as I can to fight that darn pneumonia off. Please, please keep praying for my health. Good night. Love, Heath 😔

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6/14/18 - Pneumonia
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A fever and high heart rate to start the day again today. Mom is sitting next to me at my bedside right now, as we write to you. The care team has me drugged up, weighed down and ice-packed; doing what they can to get my numbers back down. This week, I have had cultures taken each day to send to the lab for testing. None had come up with anything until today; I have pneumonia. They caught the bacteria early, before they had multiplied much. I am now on antibiotics that should clean this up. It’s been a very real fear for Mom, that I would almost inevitably get a pneumonia while here. Being hospitalized puts anyone at a higher risk for pneumonia, but being weak makes my risk even higher. So, it isn’t a surprise. It isn’t good though! One more thing to deal with. Just have to stay strong. 

Once again, today, the ice packs and a cool rag on my forehead brought my numbers down and I began to feel a bit better by late afternoon. Mom was with me the whole time again; comforting me. I’m glad she was there. I needed her. She read to me your messages. I just listened. After, I felt a little better and my fever broke, I opened my eyes to look at her and say, Hi. She and my nurse friend were happy to see my big blues eyes and they smiled at me lovingly. It’s so comforting that people care so much about me. Your prayers and messages are so special to me. Mom and Dad tell me that someday when I’m bigger, I may want to look back thru them and that they might help me thru any tough days. Tough days like I’m having today. 

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I do feel better now, though. I rocked the ice packs a long while, until my temperature was down to the normal 90’s again. I lay in my Boppy and watched Mom taking my special wall art down. The hearts you made for me were all taped up onto my wall with painter’s tape. Now that the weather is warmer, though, the art was falling off the wall everyday. The painters tape couldn’t hold up with the humidity in my room, unfortunately. So, Mom is taking all my art home and is planning to put them in my scrapbook. We thought maybe, we could print out the pictures of everyone wearing their “A Heart For Heath” shirts and put them on a poster board and use wall puddy to put it up on the wall in my room. It should work out. It will be nice to see something new. So, if you have any pictures of you in your shirt for my new wall, email them to my Mom (mrscornford@gmail.com). 

I’m up in my bouncy seat now. I think I like it even more than my Boppy pillow some days. I got a gift in the mail to my hospital room from my friend Ellen. A giraffe 🦒 toy. Mom showed me, even though I’m not in the mood to play today. When I feel better, I’ll have to get back to learning again. For now, rest...I need to re-cooperate. I’m 16 weeks old today, by the way! I can’t believe it! I feel like I was just born. Time is flying by! I’ll have been on the heart transplant waiting list for 80 days tomorrow, too. Unless, a heart arrives! Wouldn’t that be incredible!? Keep praying for me, my family and my someday donor’s family. Love, Heath

ps. Yes...I have a sock on my hand. I ran out of clean mittens. Mom brought more in today though. Lol

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6/13/18 - 39.9*C
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The only word I can think of to describe today correctly is, Long. Today was long and arduous. I started the day feeling a bit defeated. Let my prefix this by saying, I was not mad. I was not worked up. I was like pictured, above...cozy. What you don’t see in the picture was how rough of a go I was having. I had a fever. A bad one. My heart rate was upwards of 210bpm. The fever, a staggering 39.9*C (103.82*F)...I was burning up 🤒 I may sound a bit dramatic saying so, but i sure felt it.

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Morphine, Adivan, Tylenol, Ibuprofen...you name it and nothing was helping much. My nurse today was a Bro-dude friend of mine. We talked it over and decided to try an old school cure and pack some ice around me to try to bring this wicked fever down. I held my Mommy’s hand and watched The Lion King on TV, waiting for the ice and medicine to help. I quite enjoyed the ice packs, honestly. I have always preferred to be on the cooler side. I suppose that is because I started my life out on ECMO and they kept me cool on purpose to help my body. So, I liked the cold feeling. I ran my fingers over the ice packs as they began to warm up and melt. It felt so neat. New. My fever didn’t really break today, until this evening, but the ice did bring it down significantly. Then, later in the day, Adivan seemed to help.  

We aren’t sure yet what my body is trying to tell us with all of this “drama”, if you will. My fever and high heart rates from this morning and this afternoon seemed to definitely coincide with one-another. So, to be sure my heart wasn’t trying to make a statement, the care team did an EKG to check it out in more depth. They were a little concerned I may have been having some arrhythmia episodes earlier in the day that might explain something, but the EKG results seemed normal and non-concerning. If you’ve been in my life or following my story since day one, you know that I wasn’t initially a “cardiomyopathy baby”. No-one actually knew what was wrong with me. They think I had something called heart-block. I had a pacer for a while because there seemed to be an electrical issue with my heart that caused it not to “fire on all cylinders”. So, I had frequent and various, unpredictable bouts of arrhythmias. So, hearing them concerned about that as a possibility today had gotten Mom and I pretty nervous. I’m glad the EKG was seeming normal and hope my heart behaves now. 

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My bro-dude worked with me through the day. I sat up in my bouncer thru the end of his shift and watched TV, dozing off and relaxing, doing my best to breath deep and slow, and to let my body recover from today. He was able to get my numbers back to acceptable before he left to go home and my night nurse took over. I hope to stay in the normal ranges for the night, now and get some much needed rest after today’s events. Please pray extra hard for me tonight. I could sure use the good vibes. I hope my new heart gift comes soon. Good Night. Love, Heath 

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6/12/18 - Ufdah!

I had a rough go again today. I was upset this morning about how the ventilator tube felt when I moved my head and had to be given an extra dose of Adivan. Then, a bit later, I pooped and was upset I had dirty pants...got my heart rate up to 180+ and then my nurse suctioned the gunk out of my breathing tube and my heart rate was up over 210! I wish we’d have waited until I calmed down before doing that. I just can’t keep up. I was breathing hard and fast, my heart rate was high, my renal (kidney) numbers were crashing and I wasn’t even yelling anymore. It was scary. I was so worked up that my skin became marbley looking. Mom was in tears, I was wore out and I think my nurse was stressed. On top of it all I had a pretty high fever brewing that needed attention. I was given Tylenol and Morphine for my fever; then, Adivan to work with the Morphine to slow everything down. It was a hard morning and afternoon for me, to say the least. I had a restful evening so far and my numbers seem to be back to an acceptable range. Thankfully. Another day-in-the-life of me, ugh? Ufdah! 

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I plan to sit up, comfy in my Boppy and relax the remainder of the day; play catch up. I have a little box that vibrates (you can see it under my legs) that I enjoy, too. So, hopefully that will help me sleep well. I do not have much to say tonight. I’m exhausted and can’t be bothered doing any more today. Hoping for a good night and better day tomorrow. Please keep me in your thoughts and prayers. Good Night. Love, Heath ❤️

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6/11/18 - My Re-Intubation Day

My Mom was a wreck and cried when she got the call that I would have to have my breathing tube put back in today; that I had to be "re-intubated". She re-gained her composure before arriving. She told me that Her and Dad just want me to know how proud they are of me for trying so hard. I did try hard. I did my very best. I'm just not strong enough to do it all. Digestion, breathing on my own, etc...it's too much for someone with a broken heart. We decided as a family that this is a good thing. A step backwards to hopefully take a step forward. Know that 10-20% of critically ill patients who are extubated will be re-intubated within 72 hours; I made it a week. Re-intubation is often performed emergently, a situation in which complication rates are as high as 24%! I could easily be in a much worse situation if we were to wait. That is the reason my care team decided today was the day I "fell under the line" and that I should be re-intubated now instead of emergently later on. I was not doing that great extubated. I talked to you about how my resting heart rate was high, my renals were lower and my breathing was a lot of work...how this all became very apparent over just a few days. We did find that my cultures for any infections came back clean. So, at least I am going into this re-intubation situation with a fresh start. I'm at a high risk for Nosocomial pneumonia, now, again. Please pray I don't pick up that. Hopefully I can get used to the big ventilator tube, again, fairly quickly. Here is my before picture:

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Mom arrived early today to make sure she could be here to pep-talk me and be here for my procedure. She held my hand and told me I was very brave. I get told that a lot. I think I can be brave sometimes. I do get scared sometimes, too, though. I had one of my favorite girlfriends and my RT Bro-dude there to keep me safe. I trusted them and the procedure went smoothly. After waking up from the sedation, I noticed immediately that I just felt relieved. Like a weight had been lifted off my shoulders. I let the ventilator breath for me and then, did my own breathing too; taking turns. It’s nice to not work so hard. I will have to be sedated a while and let my body adjust. I will be groggy a couple days or so I imagine. The new tube will be annoying to me and I'll hate it like I used too, but I know what to expect and will do my best to be strong and brave thru this adversity. Please pray for me today. Pray this all turns out well. Pray I can do this! Man, being sick is so hard! Here is me after:

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I just keep repeating to myself that I am going to be okay and everything will work out. I’m in the best place I can be. The right place and they are doing what’s best for me to keep me safe. I am strong. I am brave. I am courageous. 

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6/10/18 - Fishing

I wasn’t much better today, than yesterday. The picture they took of my lungs shows there is more fluid sitting there that doesn’t need to be there. Hopefully my body is strong enough to work it out itself; with the help of diuretics. Still fighting something off, though, and we aren’t sure what yet. My stats were better today, but I’m still a little “off”. So, a bigger dose of Morphine and another day of snoozing was in order. I was very comfortable. Toes-out kind of comfy. 😝

Dad and I had a good talk today. He said he would teach me how to hunt & fish when I get my heart and get home. I’ll be big before we know it and he said he’d take me on a boat. It’s metal that floats on top of water somehow? It sounds very interesting! He said you take a long pole, with a piece of string and throw it into the water. If you time things just right, when you pull the string back to the boat, a fish will be on the hook?! That’s crazy, I told him, but he just smiled. He is also going to take me out in the trees, called the woods, and teach me how to find deer. Probably other animals, too! I guess they are pretty secretive and like to hide so you have to be quiet and stealthy. I’m excited to do the “man stuff” with him. Mom and Dad both say I’ll love it outside; at home. They told me that there are hundreds of baby toads all hopping around right now at home. Tadpoles from the ponds on our property all turn into toads and jump all over the place. When I’m bigger, I’ll catch them with my cousins. It’s going to be so much fun. I sure dream about home a lot. I also dream about my girlfriends. I wonder if they will come home with me, too? Hmm...

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I’m hoping tomorrow will be a better day for me. I don’t like feeling icky. I don’t like Morphine either. It makes me feel blah. No winning lately. I guess it all comes with the territory. My heart is so sick and I’m going to continue to have ups and downs until my heart gift comes. Then, I’ll have ups and downs with my new heart. So, I just have to learn to deal with my day-to-day. My life has been such a journey for me so far. I’ve come a long way; my family and friends are all so proud of me. I’m thankful I have such an amazing support net. It’s made this all much more “livable”, if you will. I hope I can be a strong and normal kid growing up. It’s scary and exciting to think about...being free from this, growing up, being home! Ugh, I can not wait! 

Anyhow, I was only awake a short while to say Hi to Mom and Dad and then I napped all day again. Dad did too... He always gets sleepy around me. He says it’s the hospital air, but I think he’s just happy to be by me and comfy, so that makes him sleepy. I’m ready to call it a night. I’m just going to finish watching my show and go to bed. I’ll do my best to feel better for tomorrow so I have better news to share. Good night. Keep praying for me. Love, Heath ❤️

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6/9/18 - A Heart Baby

It was a trying day for me. My girlfriend worked so hard to console me this morning, but I just wanted her to know I don’t feel right and I just got myself very upset. She cares about me and gave me some Adivan to help me work thru the emotions without too much damage to my body. I can’t get so mad. I’m a “heart baby” everyone’s keeps telling me. I wish I understood that more. I feel mad, throwing a fit like any other baby would if something was wrong and they have to give me sedation/anxiety medicines? It isn’t normal, I’m just little, but for a “heart baby” it is completely normal. The care staff here don’t take chances with me and how sick I am. I’m not getting better. I’m critically ill and waiting for a heart. 

I sat up in my Boppy pillow a long while. The Adivan did it’s job and I relaxed. My heart rate was still a little high, my renal numbers still a little low and my respiratory rate still a little fast, but I was comfortable. I could hear my music and my girlfriend was talking to my Mom and Dad. I didnt feel like visiting much and kept to myself, just listening to them. Dad was excited to see me. He had been gone all week. I missed him and enjoyed listening to him talk to me. Mom was on my other side, holding my hand. It’s hard for them to see me under-the weather so I mustered up all I had to give them a big Adivan influenced smile and let them know I’m going to get thru this. I am very tough. “This” is unknown right now. I’m not feeling myself. Fever, little bit harder time breathing, elevated heart rate...maybe some sort of infection? Again... 🙁 My care team will get it figured out. 

I opened my eyes to see Mom and Dad just quickly for a minute before dozing off for the afternoon. I love them. Mom had on a blue shirt. I love blue. I closed my eyes and I slept the rest of the day. Mom and Dad turned my room lights down and turned on my music box that plays crickets and frogs sounds. I dream of being home one day and listening to real ones outside my bedroom window. For now, I need rest to fight off whatever is causing me troubles the last couple days. Please keep me in your thoughts and prayers again. Lord knows I need all the love I can get. Pray I can stay strong as I have been until my heart gift comes, that whatever ails me now is just minor and doesn’t cause any setbacks and the my heart gift comes soon. Good night. Talk tomorrow. Love, Heath

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6/8/18 - Grumpy McGrumperstine

Not gonna lie I was feeling pretty grumpy today. My occupational therapist came to see me before noontime. She is the one that helps me to learn to do things that babies my age should learn to do on their own. Right now she’s working to teach me to hold my own hands. She said if I can learn how to do that, it might be easier for me to console myself when I’m mad. So, she set me up like this; put the roll and the beanbag under my arms so I could reach to put my hands together. I can do it myself, but sometimes I just need a little extra help from others. She is pretty happy with me right now. At least I think so? I sit up really well and my right side isn’t an issue anymore. I actually kind of prefer laying on the right side sometimes. Then, after the therapist left, I sat in my boppy pillow and just hung out.

I was pretty grouchy, so it was nice to just feel cozy and snooze. I had a low grade temperature today. Hoping it’s just nothing but me being too hot. I’m a little nervous though. I definitely don’t need any more infections. I’ll keep you guys posted on that. I think that my girlfriend was going to get some cultures going just in case. Probably an antibiotic round in my near future. Ugh, I’m so sick of being sick. It’s for the birds! I did get a nice pick-me-up today, though. Mom read me your messages and a new card from angel Ellen came in the mail for me. It makes me feel so good to hear what people have to say. Thank you for all your love ❤️ Someday, when I’m big, I’ll write you all back and thank you for everything you’ve done for me and for my family. You’re pretty special people! 

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This afternoon I sat up in my bouncy chair. I like sitting up a lot. This chair was a gift from the Wollner family. It’s pretty neat. It, of course, bounces, it vibrates and is super comfy to sit in. I just sat and rested. I didn’t do much today. I just visited with my family and my nurses and I took naps. I think it supposed be raining the next few days. Mom says on rainy days people can be just a little bit lazy and that’s OK. So, I think the next few days I might relax. I’ll think about it. 

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Not to be all over the place in my post tonight, but I’m working really hard on something lately. I’m trying to learn how to move my head with more control right now. I can move it side to side really good now, but it goes really fast and kind of out of control. So, today I moved my head back-and-forth and frontways-backways a whole bunch and am trying to slow it down with more control. I think with more practice, I’ll be really good at it! Getting stronger is a lot of work. I’ll keep you posted on that, too.

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Well, I don’t have a lot to say again tonight. Dad comes tomorrow! I’m gonna need extra sleep so I’m in a happy mood for him. Time to go to bed. Nighty Nite. Please pray that I don’t have a bad infection, that I can keep my breathing tube out and that my heart gift comes soon. I need it too... Love, Heath 😴

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6/7/18 - Gloves

I got a bath and sat in my bouncy chair this morning. Mickey Mouse house was on, again. I like the colors on that show. Pretty neat. I think really hard when I watch; trying to learn as much as I can and take everything in. I think I will be smart. Mom tells me I will. I have so much to look forward to in this life ahead of me. I hope my heart gift comes soon so I can start! Sometimes I feel like I have been waiting so long that it's never coming, but then everyone reminds me that my second chance at life will come in it's own time. I just have to continue to be patient. 

I could tell Mom was a little disappointed in herself today. I get milk thru my NJ tube, as you know, and that means I get a little less than an ounce every hour fed to me. That is almost 24 ounces a day if you rounded up. So, my stash of milk that she built up while I was at the American Family Children's Hospital is long gone and she can't keep up. It kinda stinks that I'll have some formula mixed in now, with Mom's milk given to me when there is some, but at least this is going right into my gut and not my tummy. Hopefully I won't know the difference. We will see. The nurses don't seem to worry about it so she shouldn't either. As long as I tolerate it well and keep growing, everyone will be happy. That's how my day started out...with formula. I guess it isn't the worst thing. It has more calories and vitamins. That could be a good thing.

Mom brought new, bigger mittens for me today. I outgrew my newborn sized ones and was using socks! They were way to hot! So, these are much nicer. I can stretch my fingers out nicely in them. I'm sure you have noticed that I wear gloves a lot. Most babies, including me, wear them so they don't stratch their face...I also wear mine so I don't grab my tubes. The nurses don't like that so much! I like to take my pointer finger and flick my nose tubes out. It doesn't feel the best and I usually make myself mad. I guess I don't really think about it before hand. I should probably rethink it. If it hurts and the girlfriends don't want me to do it...then, I shouldn't. Okay. Anyhow, that's what the gloves are all about. * Check out how funny I look sleeping while holding my Nuk. Funny huh!?

Well, I enjoyed another wonderful day. Hope you enjoyed your day too! I was thinking about sunshine today. It comes in thru the window in my room. Mom said when my heart comes, I'll get to go to a new bedroom here and that she will make sure I can feel the warm sunshine. I'm really excited about that. Talk to you tomorrow. Good Night. Love, Heath 

PS. Thank you SO very much for writing to me! It was fun to hear what you thought of my "sign language" the other day. 

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6/6/18 - A Fine Line
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Mom held me right away today. She couldn't wait two seconds to just get her hands on me. I don't blame her. I missed her, too. I sat with her and got too many smooches to count. Loved it! We watched Mickey Mouse on TV and chit chatted. I was hot and she opened my onesie up so i could "air out". I actually got too hot and sweated, later, and she put me back in my crib. I sweat up really easily because my heart isn't up-to-par. Anyhow, she gave me a quick bath and washed my hair. I snuggled up in my Boppy again and watched TV until I fell asleep. That was my day in a nutshell. Not too much exciting. 

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Mom did chat shortly with three of my doctors today. One was concerned that my breathing rate is a little excessive and that having the ventilator tube back in may happen sooner than later. The second doctor came to visit me while I was upset and he coo'd and smooched to me until I cheered up. He told Mom he was happy with where I was right now, so far as my condition and stats are concerned. He said he's keeping close watch on me for any changes, but that he was very happy that I am more consolable now and needing less Morphine and Adivan. Then, Mom talked to my other doctor and he said he was impressed, surprised and worried about me; that I am teetering on a fine line. One side of the line is me needing the breathing tube back in because the work of breathing is too much stress on my heart and body. The other side of the line is where I am now. Comfortably breathing and keeping my stats normal. He would hope to see my breathing normalize. I breath fast right now and that's not the best thing. It's so complicated. They just want to see me thrive until my heart gift comes. It's very scary to hear that I may need the breathing tube back in though...I hated it so much! Besides all that, I tried to stay positive knowing all the talk that was going around today. Mom tickled me and it made me giggle. I have the smiley all figured out now. When I'm happy, I smile. Not just lazy smiles either. BIG full mouth smiles so Mom knows I'm happy. Trying to be happy at least...hmmm...I hate being sick. Here are some smiley pictures Mom took for me. I had my renal monitor patch off my forehead and took advantage by getting some pictures for you guys. Hope you like them. 

Please keep praying for me. I know I ask a lot of you, but I'm scared..my whole family is scared. I don't have much more to say today than that. Not a bad day by any means, but not my best either. One of my serious girlfriends is here to spend the night with me tonight and she will cheer me up. I know it. I have to go to bed now. Talk tomorrow. Love, Heath

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6/5/18 - TV Addiction
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I am so addicted to TV guys..it's bad. My bro-dude had puppies and kittens on the TV for me to watch today and I just couldn't take my eyes away from the screen. How did I not know about this stuff already? I've been in the hospital over three months and am just learning about TV now?! I feel like I've been missing out! Mom says it's bad for my eyes, my Bro-Dude said it's been proven that isn't true and my therapy girlfriend said it will be good for me to start learning to follow things with my head and to "have at'er"! So, I will here-by be a self proclaimed "crib-potatoe" until my heart gift comes; now that TV has come into my life. 

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Speaking of therapy, I got this put on today after my OT session. Apparently, my therapist doesn't like me holding my thumbs inside my fist. So, she wants me to wear this doo-hickey until I learn to hold my thumb outside my first some. It's not bad. Just some neoprene and I only have to wear it a couple hours/day for a while. She did, however, check off of her list, the need to work on me laying on my right side. Now that I am breathing tube free, I don't mind that side at all. So, that was a good thing! I'll let you know how this thing works. Mom did notice my fingers were pretty free with it on and that I could still pull my face cords off if nobody was paying attention, so she gloved me up. I did have my hands un-gloved most of the day, though, and I explored like crazy! I like to suck on my hand once in a while now. It's fun to get all goobery. Mom trimmed my finger nails again today. I gave myself my first face scratch from a pointy nail and she was on top of the trimming right after. I'm really still when she trims my nails. It kinda feels good because she always rubs my hands when she's done with some lotion. After that, Mom took the TV away and put my mirror next to me. You all know I love looking at myself...

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Later, I sat up again and eventually fell asleep. Another easy going day. I've been on the heart transplant list for 70 days today! Can you believe that?! Hoping and praying my heart gift comes soon. I need it too. Please keep me, my family and my someday donor's family in your thoughts and prayers again tonight. Good Night. Love, Heath

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6/4/18 - Thankful For Lazy Days

I didn't do much today. Mom didn't even bug me to get up out of bed and be held; she let me rest. I slept all day actually. It was nice to be lazy. I'm thankful I can just be lazy now days. Don't ever take for granted your comfort. I have had so many things making me uncomfortable my whole life (tubes, needles, machines, medicines, not being able to change position, etc...). I can't express how nice it is to be able to move safely, to relax for once in my life and not feel sick from sedation or gagging on tubes. I love being able to be comfortable and lazy like today. Not much new or changed today; which is a very good thing in my case. Just hanging out, waiting for my heart gift to come and petting my pony toy. 

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I do have a question for you guys...what color do you think my hair will be? Dark Blonde maybe? I have quite a bit now and it has a reddish tint, but it seems blonde. Mom's hair is blonde and Dad's hair is (grey...ha, ha) dark blonde/light brown and his beard sometimes has red. Mom thinks I have Dad's hair. Speaking of hair, mine was so fluffy today after my bath. Also, look at my lashes! I get those from Dad, too. I have Mom's eyes, face and lips. I have big Raedel hands and I think I'll be tall, like all the men on Mom's side of my family. I have Dad's feet and long torso. I'm just handsome. Mom say's I'm perfect. I think all Mom's say that about their babies, though. Don't they?

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Well, good nite guys. Please keep me in your thoughts. Hoping I can continue to be comfortable until my heart gift comes and that my health stays stable-ish like it has been until then, too. It would be such a blessing. Love, Heath

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6/3/18 - Two For Two

I was a little moody today. I did sleep last night, however; much needed! I guess I needed more today though, because I was a little growly. I gave my bro-dude hell this morning for no apparent reason. Sometimes I have meltdowns. He hand;ed it well and helped me get my kool. I am a baby (although they seem to have to remind me daily) and I am bound to have some fits. Later, about Noon, I sat up with Dad again. He is very warm and it was so cozy snuggling with him. We watched TV together, again. He likes to talk to me a lot. So much so, that I had to put my hand up while he was talking to me, to tell him to "shoosh", because I wanted to hear what Kermit the Frog was saying. He seems to have me all figured out. I think he is the one who really likes the TV, but I enjoy it now, too. It's a good change up from the normal days, staring at my mobile.

I wanted to tell you guys that I am two-for-two pooping while Dad is holding me. I just want him to be proud, ya' know? Or uncomfortable? I'm not sure yet, but it's pretty funny. Mom and I like putting together jokes like this to tease him. She changed my diaper while I was sitting in his lap...he didn't like that too much. I suppose it wasn't too pleasant smelling...ha! Got him! After all that, I ended up getting to hot again and went back to my bed for a minute. 

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I stared at myself in the mirror while I was laying there...man am I a good looking chap! Mom says I am a little bit vain (jokingly to Dad and they laugh). I'm not sure what that means. Here are some pictures of me, though. I was smiley, then tired and I had to check out Mom, too. I like to stare at her. She's my Mom. MY mom. 

We got a nice picture together later, while I was sitting up in my bouncy chair watching...you guessed it...TV! Mom and Dad wore their "A Heart For Heath" shirts today. We sell them on my site to help pay for my bills that the insurances don't take care of. Those are MY footprints on their shirts! Isn't that kool!? They are a good Mom and Dad. I'll keep them (there I am staring at Mom again...ha, ha). Ps: I really enjoy my bouncy chair!

That's all for today. Please keep praying that the breathing tube can stay out, that I stay in this stable-ish state of being, that my heart gift comes soon and for me, my family and my someday donor's family to all make it thru this difficult journey. Good Night. Love, Heath

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6/2/18 - 100 Days Old
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I celebrated turning 100 today! Well, 100 days old...not years. Although, I think I feel like I am 100 years old. Today was all about Me and my Dad! He got the courage up to hold me for the first time ever today. He's pretty kool. We are buds. The first thing we did was take a nap, because...priorities...duh! My girlfriend and I stayed up too late partying last night and I had been awake since 5am. So I was due for a nap. Dad fell asleep, too. He and my Bro-dude nurse friend today both argreed that babies make them sleepy. I wonder if any other Dads feel the same way? Write to me and let me know if you have any sleepy Dad stories. 

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After our nap, Dad and I did more "man stuff" and watched some TV while Mom put my bouncer together...Ha! By the way, apparently I love to watch television! It was great. The screen makes bright, flashy, moving pictures that make me get lost in thought. I think it's really a neat deal. Dad and I watched TV a long while until I got hot and Mom stole me to put me in my crib. 

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She gave me a good bath with help from my Bro-dude and I felt so nice and clean. It was a good idea, because I can relax so much better when I feel clean. They set me up in my Boppy (my recliner chair...if we are going with the little "old man" theme today) and Dad put my shows back on in front of me. I sat and just relaxed watching Paw Patrol, until eventually dozing off into some much needed sleep time. 

I had a fantastic day. Numbers seemed great, I was smiley (see video on my Facebook page) and I just was comfortable. There is still talk of maybe having to put the ventilator tube back in, which would be a setback, but my future is what is first on the minds of the care team here and they care about my safety. So, please keep praying I can do well without the tibe back in my throat and that I stay stable and comfortable until my heart gift comes. Pray it comes soon. Pray for me, my family and my someday donor's family. Good Night. Love, Heath

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6/1/18 - A Happy Day
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I enjoyed today very much. It was pretty close to what Mom describes as not being in the hospital would feel like...what home might be like. I was out of my bed most of the day. Spending time being held & ooggled over by my nurse friend. Later, being held by Mom. She read me books and we talked. I don't say words yet, but i use my hands and expressions pretty well now. She read me a book about a dancing Giraffe. I've listened to it before and its a favorite, but the pictures are bright and colorful so I enjoyed listening to it again. 

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I was in a goofy mood and made lots of faces at Mom. She said I'm going to be goofy like my Dad. I was making her laugh so hard though! I know the power of being as handsome as I am. The ladies are easy to control! After we finished the book, Mom helped me sit up in her lap. I sat there for a good fifteen minutes or so. I am getting stronger; function-wise. I can almost hold my head up by myself. Mom is still very cautious and helps me just a little so I don't hurt my neck, but I can do it myself if I try hard and concentrate. My OT and PT girlfriends would have loved to see everything I was doing today on my own. I was really proud of myself. Mom laid me back down in her arms and snuggled me a while until the nurse came in and said she wanted me to go into my bed. I was like, "Darn!" because it was so cozy. Oh well...hopefully tomorrow I can sit with her (or maybe Dad?!) for a while. Here are some pictures of me being funny (there's a new video on my Facebook page too):

The girls caught onto my joke from yesterday and put a piece of tape on my nose now, so i can't scrunch it up and make the nasal tube pop out. I guess they didn't think it was as funny as I did? The tape makes me go cross eyed sometimes. It's annoying. No more jokes, i guess?

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Medically speaking, today went well, too. We still aren't sure 100% if i can stay like I am now, or if I'll need the ventilator tube back in. I pray I won't have to have it back...I absolutely hate it. I guess, during rounds, the care team was a little concerned that my lungs looked a little "wet" as they say here. Basically, that just means there is a little bit more fluid in my lungs than they'd like to see. This is because my heart function is poor. I am comfortable and happy right now, though. Hopefully not having to have PRNs and me not throwing horrible fits anymore, stressing my heart out, will count for something. So, we wait and see what happens again. Pray, Pray, PRAY tonight that I don't have to have it back in! Please. We are a little worried, to be honest. I don't have much more to say today. I did post a lot of pictures today though for you!! Good Night. - Love, Heath

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5/31/18 - The "Pursuit" of Happiness

For the first time in my life, I am starting to actually feel a little bit like a normal baby. The care team removed the big, clunky CPAP mask and replaced it with a smaller nasal cannula version. I really like this style a lot. I have my face free. Free to explore it with my hands and fingers... (Mom posted a video of me from today on my Facebook page...there's a button on top of my updates page here that you can click to go see that):

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I enjoy exploring my mouth with my fingers. Its a bizzare feeling; the wet and gooey mouth stuff. I think about sucking on my fingers, but I don't. Right now, I'm just more interested in feeling stuff. I have a lot of tubes in my nose...I like to poke my nose holes to make sure the tubes are still there. Sometimes I scrunch my nose up and the breathing nasal prongs pop out and have to be reinserted. It's funny to me and I raise my eyebrows and grin. I'm a funny guy. 

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It was an odd day, today, really. Mommy gave me a really good, warm and long bath this morning. Soaped me up, lotioned me up and put me together in my dinosaur jammies. I was kinda' stinky before, but came out squeaky clean and ready to snooze. We like our Burt's Bees soap and lotion. They smell so good and make me feel clean. We soaked my fingers in some warm water, too. Got all the ickies out. My nails grow quite fast now. Mom trims them once a week, usually. To wash my hair, Mom used a little trick one of my girlfriends showed her. She grabs a diaper and opens it up and places it under my head...now she can use a little medicine cup to scoop up and pour warm water over my head to rinse the soap off. It feels amazing! I lay in bed to get my baths, so this works well so we don't soak all the bedding.

Anyhow, i felt so nice and did snooze after my bath. Mom talked to me until I fell asleep. She watches while I sleep; standing at my bedside and usually holding my hand. It's nice to feel a little bit close to her. Mom worries I won't know she's my Mom with all my girlfriends here taking care of me every day. Today, the nurse told her to let me sleep while she was standing with me, combing my hair. She stopped and just stood with me. It broke her heart. My nurse friend was right though, I needed to sleep; yesterday was a tiring day. It's hard to see Mom sad though, but I know she would never want to make my care team mad; they are, in fact, so kind and amazing with me. My whole family appreciates that. At the hospital here, the nurses ask every day "What matters most to you today?" when Mom comes in. Every day she says, "Please just treat my baby like a baby and give him some normalcy". Little do they know how hard it is to say that. My parents say that because they want ME to be happy. For ME to feel good feelings. For ME to feel normal. It comes at a cost to them though. Mom was jealous for the first time today. She didn't tell me; i saw. I was in some type of way and the nurse immediately scooped me up and started holding and bouncing me. It was incredibly sweet and right of her to do, but it made Mom so jealous. She feels like she's missing out on everything "normal" Moms do. Although, the bouncing and lovey's made me calm down quickly and prevented me from needing medicines to calm down, and as thankful as she was for that action, it was difficult to work thru in her head. I know she will be fine. That's just one of those things that families like mine go thru that you don't know about unless you're a family like ours. You learn to live with your new normal by letting go of ideas like "I should be holding him instead" and replacing them with "that was kind and I am so grateful she stepped in for me and prevented him from needing a PRN". Letting go of the stereotype things you think a Mom or Dad, Grandma or Grandpa should be doing with a three month old baby and coming up with the new norm. It's a work in progress. Mom always tells me when she is trying to cope, "Lincoln didn't say 'life, liberty and happiness'...he said 'life, liberty and the pursuit of happiness'". I don't really understand that yet or why she comes up with these weird quotes off the top of her head (she reads a lot), but I think it means we have to just try harder to be happy with the now and work twards tomorrow's happiness, too. Or something like that?

Mom let me sleep in the end and looked sad today, before she went. I hate to see her leave to go home. We miss each other so much. All of us...me, my Mom and Dad, and my family...we all miss each other a lot, every day. It's hard to be apart. Very hard. This journey we are on has not gotten easier, even with my recent improvements. In some ways it is harder, because I look better but I am not any better. I'm still a critically ill baby in need of a heart transplant. We are very thankful for the good days, though. Thankful I am still here fighting the good fight. I am tough. We are very grateful for the improvements to my comfort level. Today really was a good day for me. I like the "hum-drum" days, like today. well, until tomorrow. Sorry to write so sad today...this is part of my life story though. I don't want to count anything out. Some family out there, like ours, needs to hear how we got thru all the hard days...we will get thru them. I will get my heart gift soon. With everyone's prayers, I just can feel it. Good Night.  - Love, Heath

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5/30/18 - NJ Tube
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I have been extubated and breathing with the CPAP help for like a day and a half now; i am doing very well. I can even have the mask off for a short time and am okay. Hopefully someday soon, I can just have a small nasal cannula. I'm quite happy with all of this, to be frank. It's nice. I can sleep easier without the tube gagging me and gunking up all the time. It's safer and easier for me to move around, too. I am up and down in my Boppy pillow, sitting up throughout the day. I can lay any way I desire for the most part and don't even mind my right side much now. It's become quite comfortable, honestly. I fall right to sleep. I get to sit up with my Mom and get snuggles every day now. I also, tried tummy time today and it went great!! I feel so free, for the first time in my life!

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Today wasn't a bad day by any means, but it wasn't all sunshine and rainbows either. I enjoyed all the position changes and I got to have food today. I have been starving for a day and a half and finally got to have some milk! The things that weren't so good today were: This morning, bright and early, I had an NJ Tube placed. The other thing was the scope down my throat.

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So, to update you guys, I have had a NG tube for some time now...that stands for Nasogastirc (through the nose, past the throat, and down into the stomach). This is how I have always gotten milk and medicines sometimes, too. I still have this tube, but now it will only be used for the occasional medicine and to help me release air from my tummy when it needs to, too. The new tube, the NJ tube, will be for just feeds. A nasojejunal (NJ) tube is a small tube that is passed through my nose and guided into my jejunum (small bowel). This kind of tube is used to feed children, like me, who are not able to get enough nutrients by eating. The main reason for me to have this tube now, is because I have been extubated. They worry now, that because the tubbing from the ventilator is no longer in my throat, and since my vocal cords and throat muscles are very weak and do not function well, that I am at a higher risk of doing something called aspirating. Mom said that aspiration can mean a lot of things, but in general it's kind of like when something "goes down the wrong pipe". It can make you choke and make it hard to breath. If you aspirate badly, i may now be able to breath, could come up with pneumonia and even die (that's probably a bit of a stretch...but possible). So, not having a bunch in my tummy for me to spit up while my throat is healing is a good thing. The milk goes right to my intestines and strait to work instead :)! (It's the yellow tube in the picture below.)

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The care team saw that my vocal cords and throat muscles aren't in the best shape by looking at them with a tiny scope today. They put the scope down my throat to view the integrity and function of everything. The right side of my vocal cords are damaged/paralyzed. This could be as a result of having my ECMO cannulas on that right side, I was told. The ECMO procedure I had (to place the two cannulas in my neck) required surgical dissection of my carotid sheath on the right side of my neck. This is very close to the nerves that help my vocal cords work. Sometimes vocal cords get paralyzed because of how close everything is. It might resolve itself and heal with time and therapy, now that the tube is out, but I may also need surgery to fix everything up, too. Hopefully, no surgery. 

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It was a very tiring day. I was wiped out for therapy, but still managed to sit up and stretch. I'm happy for the sitting time, but I was ready to nap. So, the girls laid me down and I fell asleep. Thank you for all the sweet letters last night! I love so much, hearing from everyone who cares about me. I know I'm just little and you may feel a bit silly, but I can hear and feel the words you tell me. Mom reads me your letters every sinlge day. Sometimes, twice. Keep praying that I continue to do well. That I stay this way, strong, until my heart gift comes. Pray it comes soon. Keep my family and my someday donor's family in your prayers, too. Night Nite guys.

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