10/30/18 - Over 100 Days

I went to Milwaukee to the Children’s Hospital for another check up today. First I went to Labs and they drew my blood. They check all kinds of stuff, but one thing they track closely is my Tachrolimus level. Tachrolimus is an immunosuppressive drug used mainly after organ transplant to lower the risk of organ rejection. They titrate my dosages to the targeted blood levels. After labs were done, I went to The Herma Heart Institute for my heart/general check up. They did an echocardiogram again and then my doctors came and examined me. I got to go down on some medicines today, too!

I gained a little weight and am a little bit longer. I’m still in the skinny side, so they want to see me grow some more and to do that…more to eat. So, we met with my Nutritionalist and also with my Gastrointestinal doctor; the plan is more milk and reassess in December. Possibly change my J tube to a G or GJ tube then, depending on if I’m eating more orally or not, but also depending on my size.

It was a long and busy day, but I handled it well. I’m definitely going to sleep hard tonight though. Did you know I have been home about a month now!? And I’ve had my new donor heart for over 100 days already! Times really flys! -Heath

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10/29/18 - Comfort Items

I sat in the couch with my Lilly dog and watched Mom fold clothes. I love being up where I can see everything good. The couch is nice and high for that. I have to be very careful so I don’t fall, it I’m never alone. Sometimes, I sit in the corner of the couch like this and just kick my feet and smile. Or I’ll lay up against a pillow and snuggle my blankey. Do you have a comfort item? I wanted to just say that I love my blankeys..and my pony. Whenever I’m a little upset or uncomfortable, I grab onto my blankey and pull it up and rub my face with it. Or I’ll snuggle my pony. I don’t have a favorite blankey. I love them all. I do prefer the ones with the finger and toes holes; I’m sure you know. -Heath

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10/28/18 - Naners, Football and Macaroni

I love snuggles. Let’s talk about that. Now, the secret to the perfect snuggle session is Mommy boobs. You need a Mommy and you rest against her chest. Snuggle right in with your blankey for a nice snooze. It’s the coziest place to snuggle. Your Mommy may get tired arms holding you up, so it’s best to have a pillow handy for support…just in case. You can hear a heart beat, feel warm and extra cooshy snuggly goodness. That’s what I do every day, at least. I love a nice snuggle nap mid day. Waking up from a snuggle nap is a little bit hard and sometimes, you might get growly, but don’t you fret! In a few minutes you will perk up and, if you’re a little boy like me, you will turn into a wild man! Wild men eat Bannanas! About eight bites of the Naners, is what I had today. When I woke up, Mom and Dad were watching the Packers game and eating Macaroni, so I joined in. Naps, naners and touchdowns! Nice day. -Heath

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10/27/18 - Sit

Lazy day. Mom and I did laundry, house stuff, fed our animals and were bums. I practiced sitting. I’m working hard at learning to sit all by myself. It’s really a challenge because I don’t have very strong core muscles yet; with my medical history and all. I’m getting better though! I can sit against Mom’s leg and I don’t fall side to side any more. I sit there pretty well on my own. I have a little trouble when I want to lean forward, though. I can’t get myself back. So, working on it. I also started picking up and holding my rattle toys now. I will find them, hold them and shake them so they make noise. It took me a while to hold on tight enough that the toy didn’t come loose and fall. Got it now though! I was really fussy again today, so I didn’t do much else. I think my teeth are coming in for sure. I’m drooling all over everything, I am rubbing my fingers on my gums as much as possible and I’m fussy, even though I’m usually not. So, teeth… Mom keeps saying to me “I want to see some teefers baby…”. It’s a lot of pressure, growing up. Hopefully they come soon and it’s not too hard on me. Wish me luck, ha! - Heath

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10/26/18 - Peas and Puppies
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I started the day with a fit about eating peaches. Red faced, foot kicking defiance before I even had a second bite…well, I never had the second bite. Mom stopped so I wouldn’t send myself into a tizzy. I just wasn’t interested in food. I ended up eating peas a couple times today, though. I liked them and they didn’t make me gag. Usually, when I eat, I feel urpy afterwards. The thing is…babies like me, with a feeding tube, get a little urpy thru the day normally and the doctors don’t really think twice about it. It makes it hard to learn to eat though, so we are going to be talking with my team Tuesday at my appointment. Maybe I can have an oral medicine like Pepto once in a while to help with the acid reflux feel? I don’t know? It’s not comfortable though. Mom has learned some tricks that we use to help. I don’t sit too strait up and don’t sit leaned too far back p, somewhere in the middle helps me keep the urpy feeling away while eating. I only take tiny bites. I sit a long time afterwards to let my tummy settle. We try to avoid eating during medicine times so I don’t feel icky too. I kept all of my peas down today. I don’t puke ever, it I urp up clear spit and whatever else. It’s yucky…anyways, I was all comfort today. I went to work with Mom in my comfy sweats. It was perfect because today was chilly, but not cold. Then, we ran to town quick and came home. I played and we read a book. We also went for a walk outside with my big doggies. They were well behaved and didn’t bother me. I love watching them. Silly dogs. It was a real nice day. We snuggled before bedtime and now I can’t sleep, so I’m letting Mom know. -Heath

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10/25/18 - Not Good

I had the best night’s sleep I have had in a very long time, last night. I usually sleep most of the night, but last night I slept all night. Mom and Dad were so proud of me. I felt really good today because of it, too. God must have known I would need the extra energy today; Mom, too. I had to take an emergency trip to Milwaukee this morning and it took up most of my day. After my morning medicines, my feeding tube pump kept alarming. Usually, Mom can stop the machine and just run some club soda thru and it will work again. Today, though, my J tube was clogged really bad and we couldn’t fix it. It was a big deal because I get my medicines thru that tube and I also couldn’t be fed my formula (that also goes thru the tube). So, we got down to the CHW and the Radiology department pulled it out and replaced it. So, it was a little bit of a scary day. That was our first experience with it being clogged that bad. I did make a couple new girlfriends today, so that was nice. We are going to change a couple little things to try to keep this tube working until my evaluation in December for a different tube. I am home and feel fine; all good. It was a tiring day though. Good night. -Heath

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10/24/18 - My Body Is Weird

My feet are the coolest things ever! Okay, I know everybody has them, but I think mine are very interesting. I can lift them and kick them. I just stare at them and do things that make me smile. Like, how did I even get this foot to go up? I didn’t grab it and pull it with my hand? So, how’d it go up? So interesting.

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Then, I layed on the couch and Mom clipped my nails. That’s another thing that makes me confused? Where do nails come from? Why do they need trimmed every week? We trim my nails at least that often, because I like to scratch stuff. I scratch Mom and Dad, myself and my toys…my bed sheet. I like the sound scratching makes. Cccrrrrrhhhh….ha, ha! -Heath

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10/23/18 - They Think I’m Food?

Today was a day of sunshine naps, play time and running errands with Mom. We had lots to do! We went to work, we saw Grandpa a minute, we went to town and did all the stuff and things! We stopped and shipped some things we no longer need to some friends who lost their home in the hurricane, too. Mom said it’s good to be kind to others. Friends and family are very important. I wonder who my friends will be when I’m older? Right now, I have my doggy (the little one that’s safe for me to be around until I’m stronger). She’s my friend. We lay in the sun together and she follows me when Mom is toting me around the house. I think she wants to make sure mom doesn’t take me away too far. All of our animals here are very curious about me. Mom hasn’t taken me too close to the horses yet, because she doesn’t want me near the germs just yet, but they see me and I think they like me. Or they think I’m food? Horses like to eat. And the cows look at me the same way. Our doggies, they all want to get close and sniff me or try to lick me. I see them every day, but they don’t get too close yet either. I’m just little and labs are spunky. I think I’ll really love all of the animals when I’m bigger and stronger, though. They are one of the things that I make sounds about. I Babel when I see them playing or even just moving. I don’t coo or make consistent sounds yet, but I growl and grunt. It’s cute I suppose. I’m pretty cute in general. I was real cute today when mom pulled my pants off to change my diaper…surprised her! He, he, he. Anyhow, I’m doing good at home still. It’s all a little scary yet, but we are getting adjusted and taking things a day at a time. Well, talk tomorrow… -Heath

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10/22/18 - Eight Months Old

I turned eight months old today. We can hardly believe I’m already this old. Times has flown by. The days at the hospital all seemed to drag, but the time as a whole, really went quickly. Mom and Dad still remember everything clearly…every single day of my life. There were so many times that they were afraid I wouldn’t get to today, but look at me now guys! I’m glad I won’t remember though. I’m glad that I get to live this life normally. This is my normal. I will never know any different than being a Heart transplantee. That’s good, too! I’m home and feel like a normal baby. I am so much stronger and doing well. I do all of the normal baby things. Even eating has been getting better. My family and I definitely make every single day special. I’m here. I’m happy. Today, I did all Heath things. I spent time with Grandpa and Mom took me to town (with my mask on) and I got to see lots of new things. I napped in the sunshine on the couch. I ate peaches and peas. We played, read books and I got a special delivery too…a pumpkin! I don’t know if you remember, but a while back, we said my cousins were growing me one. Well, it’s home and this weekend we are going to carve it! Mom says it’s so big that we will get the goo out and put me inside it for a picture! Well, that’s the plan at least. I’m excited. Thank you guys for the thoughts and prayers and support and love thru my journey so far. I truly believe that you helped me thru some of my hardest days. I’m so thankful, my family is so thankful, that I am able to celebrate eight months of life today. Never take a second for granted. Love, Heath.

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10/21/18 - Bigger Better Things

I love my new “normal” on Sundays. Sunday’s at home are so much better than sundays in a hospital. A day filled with snuggles, play time, football sounds and the house smells like cinnamon and pumpkins right now. The sunshine shines thru the windows and makes my play at feel so comfy that sometimes I forget to play and snooze in the warm sun instead. Sometimes, when I’m playing a long time, Mom will pull my mat along to follow the sun so it still hits me. She says that the sunlight special and will help me feel good. By the end of the day, my mat doesn’t reach it anymore, but I still have the natural light. I think it’s one of my many favorite things. I love the sun, seeing the same people every day, unlimited snuggles, bedtime stories and seeing the animals. My family has been amazing and I’m so excited to begin meeting more of them as I get bigger. We are taking it safe and slow for now; meeting people. Today I ate a whole bunch of peaches and bananas and sweet potatoes. I was in the mood and I think that, now that I’m feeling better without withdrawals, I can feel more comfortable eating. I ate about five times today and had six or more bites of food each time. It was a big deal! Better and better every day. Speaking of better every day…I am getting so much smarter and stronger! I grab and hold and pull and push my feet, my toys and anything I can get my hands on. It’s really fun! -Heath

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10/20/18 - Pumpkin

Just had a nice day. Not much to write. So, here are some cute pictures of me and my Pumpkin from Grandma. -Heath

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10/19/18 - Peaches

I tried something miraculous today; peaches! They are my most favorite food, now. I actually ate them pretty well, too. Probably my best eating “session” yet! I don’t really swallow with my lips closed yet, but I am using my tongue a lot more and that is a big step forward for me. I actually just started that (using my tongue more). I stick it out and lick the spoon and my lips. It’s funny. I know, because Mom and Dad laugh when I do it. I practiced my sitting up too! I’m getting stronger and stronger every day. - Heath

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10/18/18 - Floating

Mom and I were up and to the shop early, strait to work. We got a bunch done. It was chilly this morning, so we busted out my flannel gear! I looked handsome…well, more like Elmer Fudd, but still. Everyone thought I was very cute and I was cozy, so it was a good deal.

The rest of the day was just medicines, play time, Therapy, eating and a bath. I tried yogurt that Mom had and loved that. It was banana flavor…of course. Then, for my bath, I experienced something new…floating! Mom had me in my safe little “me-sized” tub, but we put a little more water in today and my butt floated up a little when I kicked my feet in the water. It was such a funny feeling. I got a big smile and made it happen again. I am really loving bath times now days. I used to hate them in the hospital so much. Now, though, I sit in the water and it is warm. I like to splash and watch my toys float. I was happy to be clean and snuggled in my Mickey towel when done.

That’s really all to share today. Please keep me, my family and my donor family in your thoughts and prayers. Good night. -Heath

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10/17/18 - My Thumb

I discovered my fingers were good to chew on a long time ago now, but recently, I’ve been experimenting with having my thumb in my mouth. Mom has seen me do it before, on occasion. She has always taken it out of my mouth. She said it isn’t a good habit to start. Today though, she gave up and let me have my thumb. A couple reasons…one being that since I never learned to suck like normal babies learn early on, maybe this will help me learn? Or at least learn to close my lips more, Dad mentioned. Another reason, for comfort. Since I’m still weaning off of some medicines, the comforting factor of my thumb might be a good thing to help me through. So, I guess I’m doing this…thumb sucking. Moms shaking her head…still thinks it’s a bad idea. Dad is all for it though. Do you have anyone in your family whom sucked their thumb? Mom says it will wreck my teeth someday and I’ll need braces. A lady at the hospital today was drawing my blood and talking to me about how her daughter sucked her thumb until she was ten and her teeth looked great. So,it’s a discussion. Who knew this would be such a big deal?

Other than that, today was a hospital day. We got up really early and went to Milwaukee for my appointments. I got an Echocardiogram done and the pictures of my heart and function all turned out good. So that was great! I had blood drawn and my numbers looked good again. I also had my check up at the Herma Heart Institute and they were happy with how I am doing, too. After that, we went upstairs to the Cardiac ICU to visit my girlfriends. I got lots of loveys. It was fantastic! We miss them all so much. Then, we had to see the Urologist about something Dad calls my “china-man”…we will leave it at that, I guess I need that done and we got the ball rolling. It was a busy, long and overall good appointment day.

I was so tired when we got home. I slept a little in the car on the way, but I like to stay awake and watch cars when we drive. So, at home, I went right to my crib for a nap and Mom went to feed all our animals. I got to go outside later for a short while and watch the puppies play. Mom bundled me up and I sat on the flatbed and smiled. The dogs are fun. I try to talk to them, but not much comes out yet. Anyhow, that was my day. Good night. -Heath

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10/16/18 - Bye, Bye Methadone

Today was the first day, my entire life, that I didn’t have an Opioid, Narcotic or something of the sort;not even Methadone! It was a HUGE day in my “recovery”, if you will. I had been weaning down on things very slowly for months now and today was the first day of nothing. I still have two very minimal medicines to help with withdrawals, but to be quite frank, I don’t feel like I need them and the wean off them will be a breeze. I know it. It’s all so good! I spent my day working with Mom and Grandpa. We got lots of stuff done in the office. I took a nap for a while. It was nice. When we went home, Mom and I spent some time outside. It was nice today. Not too cold for me, so long as I was bundled up. I wore warm clothes and my flannel hat. We walked around and did stuff in the yard. I make sounds when we are outside. Mom thinks they are cute. I don’t really coo yet, but I’m starting to kind of babble. The animals really interest me. I can’t be too close to them or touch them yet, because I need to stay safe from germs for a while, but I love looking at them. So we went and looked at everyone. I was so tired when we came inside, so I took another nap. I have a big clinic day tomorrow. Hopefully my checkup goes well. Wish me luck! Good night! -Heath

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10/15/18 - Sunshine Snoozes

I still feel new at home. Everything is so new to me. Like, these feet, for example…so interesting! How did they appear? Why didn’t I see them sooner? What are they for? I have a lot to learn, I guess?

I enjoyed a lot of sunshine today. First, we went to work. I laid in the floor on a blanket in the sunlight thru the window, while Mommy did office work. I fell asleep. It was too cozy. Then, we went back to the house and I laid on the floor in the patio door light and practiced rolling, tummy time and played with my toys. I watched mom walking around. She helped me sit up and eat. I am getting stronger at sitting, hopefully soon, I’ll be able to sit by myself! I sat up in my Bumbo chair today and I also went to a car ride to take stuff to UPS to ship for work. I like when the light flickers thru the car windows. It makes me feel so cozy and snuggled in.

Did I tell you guys how much of a “blanket baby” I am? I love my blankets. It doesn’t mater to me, so long as it’s holey and easy to grab. I grab the blanket up and rub my face with it. It’s so comforting. I like small blankets that aren’t too heavy, because I get hot too easy. The Afghans we have from you guys are all my favorites. The bigger ones that we have, Mom hung on the side of my crib all nice until I’m bigger. Thank you so much!!

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Well, now Mom has a camera set up to watch me at night and when she has to go outside to feed our animals. She was in the living room stalking me with it when I went to bed tonight. Stinker. I gave a good show and feel asleep. She and Dad thought I was pretty funny. I was kicking my mobile with my feet and rolling left to right. Anyhoo, going to bed. Keep praying for me, my family and my donor family. Night! -Heath

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10/14/18 - Feet

Last night, I slept so good in my big boy crib! Mom was having me sleep in a bassinet since I’d gotten home, so Ashe could watch me close. I’m doing pretty good at home, though, so my parents feel better about me sleeping in my big crib. I love it. The mattress makes it really easy to turn and roll over. I like to watch my mobile and fishes still, too. I lay on my back under my mobile and stretch my toes up and flick the little critters that spin around. It’s great. And I can really stretch out; which you know I love to do! So, I am really liking that. Hey, speaking of toes…I have found my feet and they are amazing! I reach up and grab my foot with my hand now. I can’t pull it to me, which is a little frustrating, but I still have a great time.

I had a good day today. On the weekends my Mommy deep cleans the horsey stalls, so I get to spend a bunch of time with Daddy. We had a great day watching football and snuggling. He makes me laugh so hard. I smile when he uses his hands to pretend he’s going to tickle me. He is pretty funny. He helped me sit in my bouncer chair, the swing, we sat up together to practice my core strength, I sat on the couch and we played with my toys, too. I’m pretty worn out and ready to sleep in my crib again. I actually just laid down for the night. -Heath

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10/13/18 - First Night

I had a full day today! First, I laid in the sunlight coming thru the patio doors and played with my toy. The sun felt so good. I’ve learned to really like it. It’s warm on my skin and makes me feel happy. I snoozed a while, too. Mom cleaned house while I napped.

I woke up to my aunty staring at me. She came to visit with mom and see me. She got to see me a couple times in the hospital, but was so excited to see me today. It had been too long. She thinks I got bigger. We visited a long while and I gave her lots of my best smiles. She went home and then Mom and I went to Grandmas for a bit. She took me on a “tour” of the kitchen and living room, holding me up against her. I love doing that. Mom walks me around the house all the time. We made Dad a salad at diner tonight together. I think he liked it. Salad is interesting to look at. It has lots of weird shapes and colors. Okay…well, off to bed! I am spending my first night ever in my big crib! Will let you know how it goes. -Heath

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10/12/18 - Monkey Suit Lady

Today was a nice Mommy and me day. We went to town for a hair cut…not for me yet, but for her. The place we went to was owned by a new friend. The place was nice and quiet, clean and safe for me to be at. We really loved it. When we were there, my girlfriend came to meet me for the first time in person…this is the girlfriend whom bought me my first “monkey suit”. That onesie I wore a lot when I was little-r…the one with the monkeys all over and the monkey feet. Anyhow, we love her and she came to see Mom and we surprised her with me! She cried. I have that effect on the ladies. I’m handsome. He, he, he. It was a really nice visit and first comfortable place I’ve gone too, away from home. I just enjoyed sitting in my stroller, watching everything going on.

We had a small drive home and I stayed awake. I like to look out the wind Dow and see what I can. The semi trucks and buildings are really kook because they are easiest to see, but I like water too. Sometimes, in the car, when it’s raining, I babble to myself and watch the rain roll down the windows. It’s so interesting. It wasn’t repaint today, though. Cloudy. Cold. I didn’t mind though. Any weather is better than being trapped in a room at a hospital. I love this freedom. We still have to be very careful going out and about. Avoiding germs and people isn’t an easy task, but we are getting it figured out one day at a time. Later, at home, I took a quick nap. I was pretty pooped out from the day. Dad was home and we all played. All kinds of “normal” things. Normal is so, so good guys! I love home. -Heath

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10/11/18 - Lounging

Mom wasn’t feeling to good today, so we did m’t snuggle much to keep my safe. I had a little bit of a rough day with some mild withdrawals from the Methadone wean. Just felt like sleeping, pouting some, and lounging most of the morning. We did go to work for a while, but the fresh air was nice. I think tomorrow will be better. Just needed a down day. I perked up this evening and was back to normal, so I sat in my Bumbo and we played. I ate some more baby foods and did really good tonight, too. Not much to say tonight except thank you for the prayers. Night! -Heath

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