9/18/18 - A Milky Situation

Ok…so, back to pukes again…not fun. The night was a little rough…milk pukes all over. Mom came in this morning to me puking, again. During rounds, the care team bounced some ideas off her. The tentative plan, is to hold my feeds at 25ml/hr. That’s 10ml less than before. If I can tolerate the 25ml/hr, they will try again, more slowly, to increase feeds to the full amount. Same idea as before, but no medicine changes and slower paced increase in volume. If this plan doesn’t work, then we will probably go with plan B…place an NJ into my nose. I’d be fed into my instestines and not my tummy via a nose tube. I would then, stay with the NJ, until I grow more and am big enough to have the GJ procedure (yes, unfortunately another procedure). Right now, I’m too little for the GJ. They would convert my G tube to feed into my intestines…but the research shows that it’s best for me to be a little bigger to be safe. So…if I can’t tolerate feeds and we have to go with plan B, that means I’ll be in the hospital a while longer. It’s unfair, but would be best. Sure is a tuff pill to swallow for my family, though. They were all so thrilled to hear I could be home and then, it feels like the light at the end of the tunnel was just shut off…heartbreaking. Anyhow, I had a nice bath to feel refreshed. Then, lots of snuggles and Mickey Mouse Clubhouse helped me thru the morning.

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I didn’t nap during snuggles, but I did feel better when I went back to my crib. I was smiley. SO smiley. The small break from pukes was nice. I urped up once more and then physical therapy came to work with me. It was a good session. I tried out my G Tube pillow Mom found on Etsy. It was pretty comfortable. I laid on my tummy and showed everyone how good I can hold my head up while I pressed light up buttons on my toy. Then, Mom carried me around the room a little. I looked out the window and saw a car. It was big. Someday, when I go home, Mom said that my windows will show much different things. I’ll see trees and animals, instead of concrete and cars. I think I’ll like that. Oh and hey, I found my toes today and grabbed them with my hand. Also, my tongue is wild nowadays! Mom put some Chapstick on my lips and I licked it all off. He, he, he. We read a bunch of books and I napped so good this afternoon. Hopefully tonight and tomorrow I have no more pukes. I hope you will still pray for me, my family and my donor’s family. Could sure use some more prayers to get thru this. Good night. -Heath Here are some cute pictures:

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9/17/18 - Less Is More

The care team took me off of the Seroquel again, today. I had just a few small pukes, but I think I’m doing pretty good. It’s still pretty soon to tell, though. So, I’ll be sure to keep you updated on that. The team increased my feeds to 35ml/hr now, too. I think I’m feeling pretty good about that. We are all happy to get rid of another medicine. Less medicine is better! With time…

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All-in-all, my day went pretty nice today. Got lots of cuddles in and some play time, too. I sat up and showed off how well I hold up my head. I pushed some light up buttons on my toy and made the music play, too. Then, for physical therapy, I practiced tummy time. When I’m laying on my tummy, I can lift my head up using my back muscles now. It’s pretty exciting for me! Big boy stuff! I also watched my fishes and played with my pony and bears. I was all smiles.

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I had to have a lab draw today, again. I give blood so often. It’s not fun. Mom wants to growl and bite anyone who hurts me, so it’s more than hard to see me cry when they wrap the blue rubber band on my arm and poke my veins. She comforts me as best possible and we get thru it. Like always. Being a hospital baby is not fun. I am very brave though. I took a nap for a few hours after that. When I woke up tonight, I felt much better and was happy again. Sometimes, you just have to sleep it off, right? He, he, he. Will talk more tomorrow. Night nite. -Heath

PS. Did you know you can get license plates that help support kids like me at the Children’s Hospital of Wisconsin? Here are Mommy’s plates…and here’s a link if you want to get some for your car, too: https://www.chw.org/ways-to-help/giving/how-to-give/license-plates

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9/16/18 - Poop-cident
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Mom got here bright and early to listen in on rounds and get in some extra snuggles. I was a bit of a mess when she arrived, so she cleaned me up and changed my clothes and bedding. It was nice to be cared for. I like the attention. Then, the care team stopped by for rounds. They visited me and I gave them the biggest Heath smiles I could muster. They liked that. Mom thinks it’s cute how grown up men doctors all melt when I smile at them and the ladies all want to smooch me. I’m a hunk. Anyhow, we talked about the week and the plans for tomorrow. They are wanting to wean the Seroquel again. I’m on half the amount that I was before (when they stopped it last week and I was puking), so we hope that I won’t have as bad of withdrawal symptoms this time. The amount that I am on right now is so minimal, that they would have a hard time weaning it slower than just stopping it. So, tomorrow, I believe they plan to do that. Please pray I can handle not having it. I don’t want to go thru those rough pukes again and have another set back. I need to come off this medicine, though. So…please pray for me. I’m going to try very hard. I think my bro-dude nurse friend is here tomorrow and he and Mom will help me thru this.

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I had a nice day today. Mom snuggled me after rounds. We sat in the recliner chair and visited. Watched some TV this time. It was kind of nice. I liked the colors and it got me pretty excited. I was watching the cartoon and kicking and punching my arms and legs when they moved on the screen. Mom said I was a nut. I guess I was a little wild, because I made myself poop! Mom heard me, scooped me up quick to get me on the bed and it was already everywhere…even on her shirt… I was laughing SO hard! Big smiles, bigger farts and a BIG diaper full. EEEEWWWW!! Glad I don’t have to clean up myself! I even got it on the crib. None in my hair though, ha ha. What a treat that was! Surprise! I couldn’t help it. I get a lot of milk now and I was all worked up over the show, so it just happened. I must have kicked too hard? He, he, he. First time for everything.

After another clothes and bedding change, it was play time. I was sure awake now! That red rattle ball was calling my name. Mom helped me sit up and I reached out and gave it a smack! It swung back and forth. I watched it go left, right, left, right, until I knew the right time to reach out and grab it! Gotcha’! Then, I kept doing it. It was a lot of fun. It wore me out though and I ended up snoozing for the rest of the day. Okay, well…that’s all for today. Nighty Nite. -Heath

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9/15/18 - More Time

Friends of my family have a baby my age, she is healthy though, and she turned five months old today. I am almost two months older than her. She sits up all by herself, she makes cooing sounds and mimics her Mommy and she can push herself up from a squat to standing with some help. I don’t do any of those things yet. I’m working on them, but it’s hard not to compare. We aren’t supposed to compare my life to other babies my ages’ lives. It’s not a fair comparison, with all that I have been thru and survived, but it’s still hard not too. I think for everything that I’ve endured, I am doing very well developmentally. Mom was holding me today and I was sitting up on a pillow. I turned my head to look at her when she said my name and she looked like she couldn’t smile any bigger. It made me feel so proud. I’m getting caught up on all of the things I’ve missed, a little at a time. Today, during playtime, Mom and I worked on reaching. I’m getting pretty good at it! I can look at something and make my hands go to it now. It’s very exciting. Sometimes I get over excited and look little a wild man…like this…lol:

After play time, I ate some bananas. Yummy as usual! Mom feeds them to me with a spoon now. I can swallow them good, too. Sometimes, I put my fingers in them and smoosh them in my face a clothes. That’s always funny. I ate, then got pretty tired. Mom scooped me up and we snuggled and watch TV. I love sitting on her lap and then falling asleep in the perfect position later. It feels good to snuggle. I slept a long while, too. I am up to 28ml/hr and I love having food in my tummy again. I have energy and also, sleep better. Just a nice day, Talk soon…-Heath

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9/14/18 - Getting Back On Track

Snuggles and smiles have been the main thing on my agenda lately. I woke up to Mom next to my crib. She scooped me up and last I remember, I was up against her and we were rocking. I dozed right back to sleep. When I woke up for the day, a while later, I was all smiles, though.

I sat up and played in my crib for a while, when we finished our morning snuggle session. I’m getting so good at sitting. Soon, I will be able to without using the Boppy. I can hold my head up really strong. I turn and look when I want to see things or sounds or people, too. I like that I can’t be a little independent, you know? Everyone is very proud of the hard work I’ve put in in therapy and how far I’ve progressed in the last few weeks. I’m still a little behind the eight ball, but I’m catching up!

We snuggled a little more and then she gave me a bath. I’m not the biggest fan of baths at the hospital…it’s just sponge baths. When I get home, Mom said that I can take a bath in my own tub. It’s little, like me, and I can sit in water. I’m kind of excited to try that for the first time. I think I’ll like that better than sponge baths. I want to put my hands and toes in the water, too. Sometimes, Mom lets me put my hands in a cup of water to feel it on my fingers. That’s always fun. I was so fresh and clean, my hair was nice and fluffy, and Mom put lotion on me, so my skin was super soft.

Of course I had to do some dancing after my bath! I was feeling good and also, I’m back on feeds and they are going well so far. So, I needed to celebrate! I’m getting 20ml/hr now! Working hard to get thru the bumps and get back on track to go home! Thank you for the prayers! I think they helped. So, the G tube feeds are working out again, so far. Hopefully that means the Seroquel discontinuation was the reason for the pukes. So, anyhow, speaking of the G tube. Mom has learned to take care of it for me and she moves it to a new position every three days. Here’s an updated picture. The site looks so good. Hopefully it won’t give me any trouble. Hmmm…I don’t really have much else to update on for me, otherwise.

I do have something exciting though, Dad is coming to spend the night with me tonight…that 24hr text thing…kind of. So, he should be arriving soon! Can’t wait for him to get here. My girlfriend tonight is going to teach him how to give medicines to me and how to take care of me. He’s got some catching up to do and we have snuggles to catch up on too. Will talk tomorrow and let you know how it went. Good night. -Heath

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9/13/18 - Try, Try Again

Last night, I was still not getting anything to eat. The care team hooked me up to some IV fluids to keep me hydrated, though, and I still got my medicine in my tummy. I threw up once, I think? So, much better than the other night. I am getting half a dose of Seroquel again (once a day, instead of twice a day before they took it away). Still think that withdrawals from not having it (and being cut off cold turkey) are to blame for all of this mess. The care team doctors seemed to be almost apologetic for the issues and said several of the withdrawals of that medicine (nausea, vomiting, intestinal upsets, insomnia, etc…) were/could be contributing factors to the trouble I had the other night. I was doing great with feeds until they discontinued that medicine. We all want me off medicines quickly, too, but it didn’t work to come off of that one so fast in our opinion. It could be anything else, too, though. So, we try this all again…

Mom called the hospital this morning to check in on my, like usual. My brodude for the day was here. He said that during rounds, the team had thought they would place an NJ tube back into my nose today to begin feeds. It was frustrating to hear that. So, when Mom got here, we were able to visit with some of the doctors and work out a plan that we were happier with. The new plan is as such: today, we started giving my tummy food again thru the G tube. Just a small amount to start. Then, if that goes well…that’s the ideal situation and in theory, the Seroquel replacement helped. If G feeds do not go well, the team wants to move ahead with the NJ and get me my feeds that way. I wouldn’t get a GJ yet, because I am too little, so they would send me home with the tube in my nose instead (NJ) and the G tube wouldn’t be used anymore. It seems like I went thru the G tube procedure for nothing then, because it could take a while to wean off of the NJ and to G Feeds. I guess, we will just wait and see what happens here with the re-try of G Feeds. We’ve made it admitt that we want to take this slowly.

So far, since about 4pm or so, my G feed re-try is going well (15ml/hour). Hopefully I can keep it up with no pukes. Please pray extra hard! I was feeling well today overall and played, did Therapy and snuggle and snoozed with Mom. I’m trying my hardest to stay happy. To get thru this. The bad news is, that I am not coming home for a while longer now. I’ll keep you posted on this stuff as we know more.

So…highs and lows, but I try, try again…and again…and again. I never give up. Good Night. -Heath

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9/12/18 - Spoke Too Soon?

Mom started that 24hrs stay ordeal last night. The point of it, is supposedly to have my parent(s) show they can handle the medicine schedule and care properly for me. Mom thinks it’s demmeaning and that they don’t have a right to judge parents. My parents brought me into this world to love me and they do. They will do anything to keep me comfortable and happy. She thinks it’s insulting, the “prove you can parent” 24hr hospital stay. Of course, it’s not like that, but it still feels wrong. My mom and dad have driven 202 days without falter, to see me. That is 47,470 miles so far and counting (that’s about 790 hours in a car). So, yes…it feels insulting. But, she called into work for Wednesday and when Mom got home last night from visiting me, she showered, grabbed a few things and turned around and went right back to Milwaukee to start the 24hrs “test”. The care team shuts the monitors off and she took care of me all night alone. Made sure I was cared for and gave me my medicines. No big deal, until, I started throwing up…

I was in a great mood, but so sick all night. Mom was worried, but the nurse just said she’d been passing the information along to the doctors and they weren’t alarmed. I continued puking up milk every hour or less. It was horrible. Mom would clean my mouth out with a spongey to get the icky taste out after each puke. That made me feel a little better, but I was so sick that I didn’t sleep at all. I also threw up my medicines. This was incredibly frustrating, because now matter if this 24hrs stay ordeal was happening or not, my care team should have stepped in at that point and helped me. Mom held her cool, somewhat, until the day shift girls came on and she told my girlfriend that she was done with the “test”, because someone needs to care for me medically now. It was out of hand at that point, the pukes. So, we stopped my feeds and gave some medicine to my tummy that should help me relax; it did. I was able to rest enough to keep my main medicines down and that helped a lot. We weren’t sure why I began puking, because I have been handling the G Tube feeds fine until last night? A few things did change, that we hope are the reason for the pukes. I had just come off of a medicine called Seroguel. The medicine was used to help me when my withdrawal symptoms were very bad; it’s for delirium. We didn’t think I needed it anymore, so stopped it, but maybe I needed to wean off of it slowly? So that was a thought.

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The care team sent me down to Radiology twice today. They had me examined to make sure that my G Tube was in the correct place and that my bowels were moving correctly. I guess they found I have reflux happening. The stuff from my gut is going back to my tummy for some odd reason? It’s weird because I’ve been doing well with my feeds until last night. Hopefully this is all just a result of making changes too fast, but we will see? It’s just weird? I was in a great mood again, after the pukes stopped this morning, so that’s good to know that I don’t seem to have pain. No fever, that’s good. Just so sad about it. This is just what happens every time something good happens…I have setbacks. The team will get things under control and fixed up. I just want to eat, play and be merry…go H. Someday…this will set us a back a little. It’s okay though, because at least it’s happening while I’m still inpatient. Please pray for me. Pray for my comfort and for things to clear up. Pray I get better soon. We read your messages every day, too.

Hoping tomorrow is a better day and I can start feeds again. I’m going to be so hungry (I am getting IV fluids at least). Better than puking though, I suppose. Thank you guys for the encouragement for me and my family. For the prayers and love you send me, my family and my donor family. -Heath

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9/11/18 - More To Know
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Today was another training day before my discharge. Hopefully early next week. Mom learned more about my medicines and how to give them to me, how to keep me safe from germs and what to do if there’s an emergency. They also talked about what happens with rejection. It’s a scary thought, but at least we know what to expect if it happened to pop up in the future.

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They talked about me going home and tonight and tomorrow, Mom has to do a 24hrs stay with me at the hospital. She will do all my meds, cares and love on me. They say to make it like we were at home, but Mom says this place is nothing like home. I will love home! There is carpet, good smells from the kitchen and unlimited loveys. I’m so excited.

I got a really good bath and a cute outfit put on, then I played with my red ball and fishes. It was fun! I’m very good at swinging my arms and getting them. Hmmm…what else? Not too much today. Going to snuggle all night and will talk more tomorrow I suppose. Nighty nite. -Heath

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9/10/18 - Discharge Planning

First, I did a speech therapy session. I ate a bunch of carrots again. They are delicious. MMM! Right after, my physical therapist came in. Good thing, too, because I was dozing off. She caught up with me just in time and we played a little while. I kicked the block that lights up. I reached my arms out and touched the lights, too. I am getting better at reaching while sitting now. That makes me proud that I figured it out. I am getting smarter and stronger. Everyone is very excited for me! I dozed off hard after playing in therapy. Snuggled up with Mommy for a long snooze.

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I am still doing good with my G (tummy) Feeds. I am up to 20ml/hr now! It’s the most I’ve ever gotten! No pukes so far! Yay! I will probably go home with a feeding pump that pumps the milk into my tummy continuously. I’ll use that for a while, until my tummy and gut is stronger. It’s a little weak still. When I can, I’ll get bolus feeds. Those are bigger amounts, a few times a day. Like a normal baby would get. I am still learning to eat, so hopefully I will be better and eating more by mouth then, too.

You may have noticed that I am back on the O2 nasal cannula. My blood oxygen stats have been a little (just a little) bit lower than where they should be, so the team decided to keep the Oxygen on for a while longer. We hope that I can wean off of it by the time I go home (possibly mid week next week is the talk now). If I can’t, then I will go home with Oxygen and wean off of it at home. So, we will see how it goes.

The transplant team met with Mom today, I ease dropped per usual. They are starting discharge planning! It’s crazy to think about!!?? They talked about rejection signs, keeping me safe from germs and sickness, my medicines, schedules and appointments and a bunch of other stuff today. Tomorrow will go more indepth. Tomorrow, I’ll tell you more about that stuff. Talk to you then. Night nite! -Heath

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9/9/18 - The Upside

Tomorrow will be my 200th day in the hospital and I'll be 200 days old! What a crazy journey it has been thus far...wow. I've fought SO incredibly hard to get to the place I am now...stable. It's hard to even say that word, honestly. It's scary to feel comfortable when you've been thru everything my family and I have in the past. I'm happy now. So incredibly, unequivocally happy. For the first time in my life, It's like I am on the right side of a bad situation...the upside. 

I smile in my sleep. Sometimes, just dreaming. Sometimes, I am dreaming and Mom will make a silly noise and I'll smile. I smile a lot. Smiles are my favorite. Today, especially, I have a lot to smile about...I'm tolerating G feeds. Things can always change, as we have learned thru this all, but as of today, I have tolerated continuous milk into my tummy at a rate of 5ml/hr yesterday and 10ml/hr today. If I keep it up, the care team will increase my feeds to 15ml/hour tonight at about 9pm or so. This is a HUGE deal! If I can fight this fight and handle these feedings into my tummy, I will go home in such a stonger, step-ahead place. I won't be so far behind. Thank you for all of the messages and prayers, helping me thru this recent adversity. I don't think any of us really thought this could happen, but I am doing it! Please, Lord, please let my body keep up the good work and grow stronger.

I snuggled with Mom, in my Boppy and wrapped up in my blanket. I was very sleepy today. My vitals were fine and I am okay, but digesting milk for one of the first times in my life is a lot of work! So, I snuggled and snoozed. My favorites! It was a great day. Mom read me a few books between doing her training sessions with the team. So much stuff to learn before I come home. Today she did CPR again, gave all my medicines to me while she was here and did my G-tube cares. Big days coming up! I think I will go to bed now. Good Night. -Heath

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9/8/18 - G Feeds

Dad came to see me today! It was nice to see him. I was in the Mamaroo chair (we borrow from the hospital) when they came into my room. My Respiratory Therapist was helping me with a PEP treatment. It looked funny (above). I had just had a nice bath and my hair was all wild looking. I looked out of sorts, but I was happy. When I saw Mom, I faked crying so she would pick me up. She said I'm already "that baby"? I wasn't sure what that ment. I like to be held though. She said I can be held any time I want. I've been thru so much and we have missed more than enough snuggle time. So up I went and she swayed side to side while I was up against her watching my numbers on the monitor. I was so happy Mom and Dad were here. There is a lot of change coming up and you all know how I feel about change. So, there's a weird feeling in the room. It's a little scary, a little nerves and a lot happy. The H word is so close!

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I started getting fed into my tummy today. "G Feeds", they call it. The milk is in a syringe and a pump runs, pushing it thru my G tube and into my tummy. I am starting at just 5ml/hr. It's a perfect amount to try at. I started feeds late this morning and as of about six thirty tonight, I am still tolerating feeds good! No pukes! 

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Other than all of that, I had a wonderful day. Lots of snuggles and I even watched some of the Wisconsin Badgers game with Dad. They won! Mom and Dad did some more training today. they have a lot to learn about, before I go home. So, this weekend and all of this next week, there is training stuff to do. They did CPR and learned more about my G tube cares, today. I have lots of medicines and care stuff that they need to know well, when I do get to go...you know... So, that's what's happening and coming up. 

Here's a bunch of cute pictures from today. I feel so handsome without tape and tubes on my face. Its the first time in my entire life that I haven't had anything on my face! It's SO wonderful!! We are all so thankful. Also, I like to chew on sponges on sticks. I was pretty happy about it today. Ha! Please continue to pray for me, my family and my donor family. I need prayers to help me thru the next few days of trying to be successful with these G Feeds. It would be absolutely Ideal if I could do this. Talk to you more tomorrow! -Heath

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9/7/18 - Percutaneous Endoscopic Gastrostomy

Well, it went well...I am dealing with a lot of soreness/pain from the procedure, but my vitals have been great. The care team hoped I'd be okay with just some Tylenol, but when I woke up this afternoon from the anestisia nap, I was very uncomfortable. I couldn't be soothed and I needed to have Morphine. A few doses of it, unfortunetly. It helped; I was awake and comfortable. 

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The procedure to place the percutaneous endoscopic gastrostomy didn't take long. Maybe only a half hour. It was very quick. It's a little bit of a rough procedure Mom thought. The surgery team filled my body up with air to open things up, so they could do the work. They used tools thru my belly button; it's very bruised up now. The lady whom worked on me said that my belly button popped out and she had to stitch it back. I will be sore from those things. The tube will not cause me pain, though. We will have to keep it clean and that should really be about all for care of it. Here is what it looks like (above) and here is what I look like (below):

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The plastic piece (the white one against my body, holding the tube) is there to keep the tube at a 90* angle coming out of me and not let it kink. Then, at the end of the tube (on the outside of my body) there is a cap. That is how I will get fed. Mom will open the cap and use a syringe to give me milk so I get adequate nutrition until I learn how to eat. They have it uncapped for a while and wrapped up to let any access pressure out from the procedure. I also have a new bruise that Mom is a little uncomfortable about. No one seems to know where it came from (on my right inner thigh). No more face tape or nose tubes! Do you like it?

No more face tape or nose tubes! Do you like it. I was holding Mommy's hand while I woke up. She was humming songs to me and played my mobile music, too. I liked that. It helped me stay relaxed. This is all such a big step for me! My family, friends and I are all so excited and nervous. Please continue to pray for me to do well recovering and that I won't be in much pain. Please pray that the doctor making decisions about starting my G feeds takes his/her time. Please pray that I do well. Pray I can do all of this and go HOME soon. I turned six and a half months old yesterday, today is my 197th day in the hospital, Mom has drove over 35,000 miles to see me every day...it's time to start my life...don't you think? Thank you for the messages and gifts. Thank you for the kindness and prayers. -Heath

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9/6/18 - The G Tube
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So, tomorrow is the big day for the G Tube placement. A lot of confusion and questions have come up. My parents are also thinking a lot of what you've been asking about, but here are the answers. So, I will be getting a gastrostomy tube (also called a G-tube). It is a tube inserted through the abdomen that delivers nutrition directly to my stomach. Some kids, like me, have medical problems that prevent them from being able to take adequate nutrition by mouth. In my case, I have been sick as such a young person, that I missed a vital time in my learning/development. I missed the time in my life in which I had natural instincts to suck. So, now I am learning how to do that, how to move my tongue around (since I had a ventilator tube in my mouth so long and never learned) and more little things that are supposed to come naturally. So, the G Tube is a short term solution for my situation. It's one of the ways doctors can make sure kids like me (with trouble eating) get the fluid and calories they need to grow. right now, I have tubes in my nose (the NG and the NJ) that do the same job as this new G tube will do. The reason to do the procedure, is in short words "to progress". I am doing well with the nose tubes, but they make me gag and interupt my breathing making the O2 cannula nessecesary. We hope that by doing this procedure and then removing the tubes, I will do better at learning to eat normally, because I won't feel those tubes in my throat. Also, having the G Tube placed, I will try out feeds into my tummy again. This means that without tubes in my nose this time around, I may do better because I wont gag on the tubes and cause myself to puke the milk feeds up. Also, I will be at a safer risk of aspiration from puking if I do. So, get the G Tube placed tomorrow, start feeds to my tummy in a day or two after and hope it goes well. It's possible that I won't be able to handle the G (tummy) feeds and the care team may need to switch me back to getting feeds into my J (small instesines) like I have now. If that happens, it is very simple to convert this new G tube into a GJ tube. So, for now, lets just hope that I do well with food in my tummy! Prayers please! Other than that, I don't have much else to say about it today. Will be sure to share more tomorrow. 

I did have a nice day today. Therapies went great, Mom and I snuggled and played, I got good naps and smiles galore! I felt good! Well, I felt good all day except for during Speech therapy when she had me try something new and it made me gag...applesauce! YUCK! I hated it SO much! She gave me a small bite and I thought I might throw up. I was not a fan. Next time, let's just stick to Bananas and Carrots for now. Maybe, if we mix in some with one of those, it might grow on me? Eeeww! Anyhoo, I wanted to tell you that. Will talk to you tomorrow. Good Night! -Heath

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9/5/18 - Things Are About To Change

I was snuggly today. Mom was here and we visited a long while. Smiles and smooches. That's what we do. Smiles, snuggles and smooches! My favorties! I was in a good mood all day, unlike yesterday. Hey! A man needs to vent once in a while and I have been through a lot! He, he, he. Anyhoo, I was able to get a few therapy sessions in today. First, Speech Therapy came and I ate some Bananas with her and Mom. She is teaching me how to swallow foods and I am starting to make some good improvements. I ate eight spoonfuls of bananas today and swallowed them all down. The best I have ever done! It was wonderful! The girls and I are all very proud. After that, I kind of dozed off some. I was a little sleepy from all the smiles flirting with my therapist. She likes me.

So, I slept a quick cat nap until Occupational therapy came to work with me. Today, we worked on reaching more. I am very good at reaching out with my arms when I'm flat on my back or on my side, but when I am sitting up, I concentrate so hard on sitting that I don't think about reaching for things much. So, we worked on that. I have this toy block that plays music...i like to kick it and make the lights go off. Today, I was learning to reach for it instead. I did pretty good! I learn a little too much forward when I am trying to reach instead of stretching my arms out. I'll have to work on that more as my sitting balance gets better. 

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After therapy, Mom held me and we bounced around the room some. I love to watch the vital sign lights on my monitor, so she held me up against her so I could see it. Then, she turned so I could look out the doorway. I love to people watch! Usually, I can glance at people in the halls so they come visit me. Using the cuteness factor to my advantage, you see? Then, I laid in my crib and listened to Mom, my girlfriend and doctors talking. My G Tube procedure was changed to Friday, so I am pretty happy about that. It will be best to have familiar girlfriends working that day, when I think my brodude is on shift this weekend too. I want familiar faces when I am recovering and trying this whole getting fed in my tummy ordeal again. Please pray that my procedurel goes well and that being reintubated for it doesn't hurt my vocal cords. Please pray that I recover well and that i do well with tummy food! It's a BIG deal! Pray, pray, pray! If feeds go well, the talk of the town is the H word could come in as little as two weeks!! So, anyhow, i'll let you know more tomorrow. Good Night! -Heath

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9/4/18 - Mr. Growly Pants

I woke up in a fantastic mood today and it lasted most of the day. I was smiley and happy. My nurse bro-dude was here today and we played. It was fun. I did my therapy and ate some banana again, too. This time, when I ate, I actually took some and swallowed it instead of pocketing in my cheek first. It was a big accomplishment! I'm starting to get the hang of eating with a spoon. Mom and Dad joke that someday, when I am big, I will have a great trivia question that only people close to me will know. The trivia will be that I have never had a bottle or nursed. Crazy! Not too many people can say that is a fact about them, now can they? He, he, he. Not that its a good fact, but it's still interesting. Anyhow, here are a few pictures from the day. We didn't take too many today. I was worn out by the afternoon from all the morning fun I had, that I started to turn into Mr. Growly Pants. I sound like a little Bear or a Dinosaur when I am not happy. First I grunt and make faces, then I let my new voice rraawwwrrrr! I'm not a baby whom cries much for real, but I do let known that I want something by throwing a fit. I was snuggling after therapy and decided I wanted to go to my crib and take a nap. So I let Mom know and that's exactly what I did. Nice long evening snooze to finish the daylight. Anyhow, I think we will learn more about my G tube placement tomorrow and I'll fill you in on that. I think Thursday is the day! Hoping it will go well. Hoping it will be the last time in a very, very, very long time, that I will have to go under anestia. Please continue to pray for me, my family, my donor family and my girlfriend down the hall. Good Night. Talk tomorrow. -Heath

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9/3/18 - No Labor Day
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Today was No Labor Day for me. I've never had a job. I like to think that my job is to make everyone smile. Mom and Dad would love if that would pay my bills! Ha, ha! Smiles for pennies. Smiles are great though. They do make a person feel good. I smile when I am happy. Sometimes I smile when I am grumpy too because I can't decide how I want to act. I'm a complex guy, what can I say? Anyhoo, I sat up and watch my fishes a long while today. I love it. Mom says no real fishes at home though, so we will have to keep this one powered up with fresh batteries for a long time. Do you see how good I sit up now!? All by myself and my head is no problem to hold up either. I can almost sit up without help from the Boppy too. It's going to take some more time, but I'm doing so good. My friends and family call me a Super-Hero, so i have to make sure I am strong! I'm working on it hard every day! I even worked on some tummy time and practiced lifting my head up, too! I can't really push my arms very hard yet, but I can lift my head off the pillow (or bed) just enough to get my nose up. It's not much, but it's a start. I don't really care much for real tummy time. I prefer the tummy time I get when Mommy holds me up against her and i am more upright. 

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I stayed up a while and was all smiles. I like to play. I kick and punch and wiggle around. I can sort of move myself around in my crib just a little by noodling my body back and forth. I can almost turn over now, too. I kick my leg out and get onto my side and then swing it out further so I kind of tip over. Still getting stuck on my top half, though. I'm getting there. All that playing pooped me out. So, we did do that tummy time later on. Mom held me in the big chair and we snuggled. I napped so hard today. I think we were snuggled for a few hours. Too long. Mom's old and her body was numb and needed to move, so I went back to my crib when I wasn't quite woke up. I ended up falling asleep in my Boppy right away. Great day for me! I love to snooze. It's my favorite. I'm a growing boy, you know? Well, i guess that's really it for today. No big updates. Weaning down on some more medicines that I get thru my NJ tube. Seems to be going well. Talk tomorrow guys! Good Night! -Heath

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9/2/18 - Sunday Bumday
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Wow...i look pudgy in that picture...he, he, he. I am a little pudgy nowadays. It's a great thing. The care team would actually like to see me gain a little more. I'm 13lbs 14oz as of today. I think my girlfriend will re-weigh me tonight. The care team owuld like to see me around 15lbs before my G-tube procedure is done. They did schedule it for next Thrusday tentatively though, so it musn't be that big of a deal? I don't know for sure. I'm feeling good lately and getting the nurtition I need to grow thru my NJ tube. I get 33ml/hour of milk. I am eating some real foods now too, as you know. I tried some carrots again today. They weren't too tasty. I think I was just too tired to eat them. Today was just a good day to snooze all day. That is exactly what I did, too!

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Mom helped me onto my play mat so I could kick and punch and giggle with my toys. It was fun to play. I was ready to nap, not too long after I started, so she scooped me up for snuggles. We sat together and I snoozed so hard. It was nice. I like laying with someone, instead of in my crib alone. I think it's the breathing in and out feeling that makes it so comfy. When I woke up, I was in a different position than when I fell asleep. I guess I must have been wiggly?

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Mom helped me to my crib and I sat up in my Boppy. We read some books. I love books. I like listening and raise my eyebrows when the pages turn. I like how Mommy makes it exciting and I like the colors. We read books until I fell asleep. It was nice. Later in the day, Dad stopped to see me. I was sleeping when he arrived. My girlfriend helped him feed me carrots and he changed my diaper for the first time. I slept again and he went home. It was a really nice, snoozy, happy day. Good Night. -Heath

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9/1/18 - No More IV Pole
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I started the day off with a snooze. I was sweaty and icky. Mom woke me up after an hour or so and gave me a good bath. I needed to be awake a little during the day so I sleep at night. My schedule has been a little up and down while I was coming off medicines. Hoping to normalize a little more before the “H” word. After I was cleaned up, Mommy dressed me up in my Opening Day outfit! My first Camo outfit. It’s a 9 month size and Mom was all emotional about it. I’m growing up so fast she says. Daddy was so happy. I think I looked pretty manly. Someday when I am big, I’ll go hunting for meat. I have doggies that like to go get birds and we will have a lot of fun together. Daddy will probably teach me. Anyhow, no meat for me today...today I ate banana again. I sat up in my Bumbo. I can sit up without anyone holding my head up now. I can hold it up all on my own! I sat and Mom fed me, Not too much banana today, but a few tastes. I’m not very good at swallowing yet. I like to put my food in my cheek pocket like a chipmunk. I eventually swallow it, but I take my time. I don’t even drool much. Mommy had me wear a bib today to keep my outfit clean. It worked okay. I looked cute. Mr.Beaver watched me eat...I think he wanted to have a bite too. I don’t know if beavers like bananas, though? 

After all that, Mom scooped me up and we snuggled for a long time. I slept so good. Then, we played and visited some more. My girlfriend took out my PICC line (that was in my leg) this morning! No more IV pole!!! The first time in my life!! It’s such a wonderful feeling to be free of more cords. Like my friend told us...shedding my layers, one at a time. So, I’m excited about that and pants. Now I can wear pants! Mom might bring some. I had a really nice day. I know many of you are wondering when I will get to hear a date for the “H” word, but so far there isn’t a date set. The doctors frequently say “hopefully, if all goes well, you could go home in as little as a month”...but, we have heard that for a month. So, I don’t know for sure when I’ll get to leave here and start my life? Like it’s said though, “Good things come to those who wait” and to those who work hard, too. I think I’ll be going soon. I’ll be sure to keep you updated. My family will have a big party for everyone to visit and catch up when I can. I guess I better go nite nite. Talk tomorrow. -Heath

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8/31/18 - Short and Sweet
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Hey guys! So, not the most eventful day. It's good. I was a sweaty beast of a kid all day. Mom took me outside for a while to nap in the sunshine, I came back to my room and got a bath, therapy came and worked with me and then I snoozed. That's it. Short and sweet tonight. Talk tomorrow! -Heath

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8/30/18 - Sunshine & A Cool Breeze

I had banana today. It was delicious! So, two foods tried, two foods liked. Carrots, Bananas...now? We tried to get peas, but they were out. Maybe those will be next. Have to start vegetables now, so I’ll favor them as I get older...at least that’s what I’m being told. I don’t care, I just like trying stuff. Yum! Then, I did therapy sessions with PT and OT, I played on my play mat for a while and loved that, then I just smile and played with my mobile until Mom got here. She brought sun glasses with. Yesterday, when I went outside for the first time ever, my eyes didn’t like the bright sun...so, because I don’t have baby size sunglasses yet, I wore some aviators. My brodude brought a hat out for me to keep my head warm outside and help with the glasses , too. It worked good, believe it or not! I liked wearing them. They helped a lot with the brightness. I kept my eyes open more and looked around more this time outside. I like it so so much! 

I rode around in the stroller a bit. We made a few laps. Checked out the bushes and trees, listened to a guy with a leave blower across the street and then I took myself a nice nap in the sunshine. Absolutely perfect. Mom said that the weather today was probably the best of the year so far. It was warm, with a breeze and the sunshine shown thru the trees into my face. 

We had to go back into the stuffy hospital eventually, but on our way back to my room, we stopped to look at the fishes. I have a fishy tank, but this one was big and I loved it! I’m looking forward to going back to see it again. 

When I did, eventually, return to my room, I played with toys with Mom and practiced my sitting. I am getting very, very good at it! Well, that’s all for today. Perfect day!!! -Heath

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