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.
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
Just had a nice day. Not much to write. So, here are some cute pictures of me and my Pumpkin from Grandma. -Heath
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
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
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
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
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!!
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
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
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
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
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
That’s what we call appointment days…going to MLK (Milwaukee). I had to go today for my check up. I don’t really mind the drive, but I had to do a three hour car ride and we left by 5am from home…we tried to beat the city traffic. We didn’t miss it. Oh well. I have morning check up appointments and that works good for my medicine schedule. But, when we go to the city in the morning, people are going to work and it gets clogged up on the interstate. Mom usually stops and readjusts me or we walk around a minute half way there so I don’t get uncomfortable. I really like my car seat though. It’s cozy. Anyhow, we got there and I rode in my stroller to the Lab to have blood drawn.
People look at me funny when I’m strolling along with my mask, feeding pump, a bag of formula and tubes curled up. Mom says it’s just because they are curious. And also, that I’m very adorable and they want to smooch me but the mask protects me from cooties. So…we got the the Lab and my girlfriend saw me right away. She works in the Lab and knows that no one else can dra blood from me like she can, so she grabbed me and we got it done. She does so good. Only one slick poke and that’s it. She’s a magician. Or an angel….something special. It makes lab draws less stressful for sure!
We went to the Herma Heart institute just down the hall for the next part of my check up. I was happy to get my onesie off and snuggle on the doctor table in my blankey. I like the cool. It was cozy and I dozed off until my doctors came in. Something funny…I was so cozy, I rolled onto my tummy and somehow pee’d outside of my diaper and onto the bed. My doctor went to roll me over and wake me up…he got a surprise and laughed. Mom was confused because my diaper was dry. But, it was definitely pee. This is how I looked before that…he, he, he.
Anyhoo, my appointment went great. My numbers looked good, too. So, I seem to be doing well. It’s a wonderful time! -Heath
We’ve really started to settle in at home. I like it here so much! I get to do so much more activities. And there are less people bugging me. Today, we tried to relax into a routine. My days are filled with lots of medicines, eating baby food, playing, taking car rides and seeing Grandma and Grandpa when we go to work. I really enjoy sitting in my bouncer still. I like the Bumbo chair and just laying on the floor on a blanket, too. Mom try’s to keep me busy during the day. I take a noon nap. Then, when Dad is around, he scoops me up to visit. I’m so happy to be home! I’ve been a good boy at night, Mom says. I only get up at night when I need a diaper change or want to snuggle a minute. Then, I’m right back to bed. Thank you for your continued prayers. I’m working very hard! -Heath
Well, last week Friday, I had my second heart check up. The team took a biopsy of my heart tissue to check for signs of rejection (that my body was attacking my new heart…a foreign organ). We had to wait all weekend, but this evening, we got a call and were told the results of that biopsy. And…they didn’t see any signs of rejection so far! It’s a big deal and deserves a celebration. I’ve had my new donor heart since mid July and I seem to be doing well with it. Dad was just talking with Mom about things and how my transplant story has gone…I think that my transplant team did pick the right heart for me. It was a little big, we had trouble with it from the get go, but now I seem to be thriving. We are so thankful! I’m so thankful and happy to be home and get to be a “normal” little boy. Such a miracle. Please keep me, my family and my donor family in your prayers. -Heath
I had a long, warm bath this morning and washed my hair. I needed it. I think every other day or so I’ll need a little wash. Then, I tried Banana Berry mixed goo…it was good, but I only took a couple bites because im still not too keen on eating. I think we will definitely try that one again tomorrow, though. A lot of little stuff happened today… I found out that hair is pullable and no one is safe from my grasp. He, he, he! I got Mom and Dad really good. Dad’s beard was nice to grab and pull! I petted on of my puppies though, and I didn’t pull her hair. We washed my hands after, of course. Later, I helped Mom make spaghetti for supper and watched meatballs and sauce mix together. Mom let me hold a noodle. I squeezed it to mush. It was fun. That’s about all that I did today. We bum on Sundays. Now, I’m laying on the bed with Mom catching my blog up, playing with a book I like. Night time soon. -Heath
Not too much happened today. We went out on our first family outing. Just to town. I wore my mask and no one was in contact with me, so we felt pretty safe. Probably less germs than a hospital trip honestly. I loved the stroller and car rides. It was fun to see the lights, people and stuff in town. I sat with Dad at supper too. I didn’t try any food this time, just hung out with Mom and Dad.
We got home and I was all smiles. We did the normal things…medicines, snuggles, etc. I went to bed. It was a great day for us. I slept like a rock all night. -Heath
I had my second heart check up today. The “cath lab” checkup. Mom and I got up really early and went to the Children’s Hospital of Wisconsin for the appointment. I did great for the long ride in my car seat. I like the car so far. When we got to the hospital, the staff took me back to the OR and I got sedation medicines. I had to take a long nap for the procedure so I laid still enough for them to do it…and so it didn’t hurt at all. So, after medicine and a little time, I was out like a light. I think some of my new girlfriends today were pretty sad when I was napping, because they couldn’t see me smile at them anymore. I flirted so hard! I said i’d See them again, for a different checkup day.
So, they did the heart check up (cath lab procedure thing) and I was a good boy. They said that things looked good when they looked inside my heart. My labs came back good too (blood work). So, I was happy to hear that. The hospital said that they will call us Monday with the results of the tiny biopsy they took from inside my hearts left ventricle. They will check the tissue for signs of rejection. So, pray that doesn’t show anything concerning. No rejection please!
I went to a recovery room, after they were done with the procedure, until I woke up good enough to go home. Mom gave me my medicines from home and we went back home. Long day, but I think it went okay? Will know more Monday. I really enjoyed my stroller ride on the way back to the car. I haven’t gotten to be I. A stroller much, but I really thinks it’s great. I lay back and see whatever I want to look at. I even peek for Mom at times. She laughed at my toes poking out of my blanket today. When we got home later, I played and stretched out when I got home. Eventually it was bed time…good night. -Heath
Weaned down a little on my Methadone yesterday, so last night wasn’t the best sleep I’ve had since I got home. I woke up this morning, got snuggles, playtime, clean clothes and snuck in a nap in the sunshine. It felt so good to stretch out on the couch and snooze, Mom was right there to make sure I didn’t roll off, of course. I love getting sun now. The hospital lighting is so artificial. My family always said that isn’t good for anyone. You need real light to feel good. I’m starting to understand that now. Sunshine is just one of the many perks and wonderful things about home.
When I woke up, we went to work for the day. Yesterday, I spent time with Grandpa at home, but today Mom took me over to my Grandmas to visit while she worked. Grandma has a very clean house and she felt safe for me to go there. I still have to be very careful of germs and things that are dangerous to my health. We are very cautious. I have masks and we wash hands a lot. I really enjoyed the visit though. When we got home from work, Mom and I talked about my Cath Lab tomorrow. I have to go to the Children’s Hospital again and they are going to put me under and check my heart. Like they did last time. To check for rejection. Praying that I’m ship shape. Mom is all scared that, since I’ll be admitted for the procedure, that she’ll have to fight to get me discharged to go home again. I guess that’s a weird thing to think, but I just got home and she doesn’t want to loose me again. Never, ever again. So…I have that tomorrow morning. We have to leave home really early to get there in time. It’s a couple hour drive, you know. So, I hope to sleep the whole way down. Please pray things go well.
I also tried out my bouncy thing chair deal? Not sure what it’s called but it was fun. I don’t know how to bounce, but I can make myself move pretty good and it was a lot of fun for me. After that and some play time, I ate some more food by mouth. This morning we tried oatmeal pear and I hate it. So, this afternoon I ate Bananas and you know I love them. Mmmm! I still haven’t figured out to close my lips to swallow. So, we worked on that some. Then, Mom and I folded laundry and Dad came in to say Hi! We watched football and I am about to go to bed. Good Night -Heath
I think home is awesome guys! Today, I weaned down some more on my Methadone medicine. Whenever I go down on it, I get withdrawals symptoms for a little bit. So, to be home and be able to distract myself with all the snuggles and play time I could want…it’s so much better than being in a hospital. I’ve been sleeping good at night too. I only wake up once or twice for a diaper change; then, back to sleep.
I played a lot today and didn’t have withdrawals for most of the day (just this evening), so I was smiley. I love when Mom and Dad kiss my feetsies. I smiled so much today for Mom’s pictures. I was laying on the floor in my living room and playing with my toys. So nice! The sunshine was coming in thru the patio doors, too.
While I was playing I rolled myself around. I can roll most of the way over now. I don’t really like being in my belly much yet, so I roll almost there, if I go to far and roll all of the way, it’s a “whoops!” and I roll back. I’m getting stronger and smarter every day.
I think that’s really all for today. Good night. -Heath