4/28/18 - Trust

I learned that in ancient times, way before we were born, people believed that the heart was the center of all human emotions. The heart is in the center of the chest and since love is a strong emotion, the heart became the symbol of love. Simple logic, but I bring this up because it's kind of ironic that my heart has brought so much love into my life at such a young age. I want to show you what I mean. Look!


These are "A Heart For Heath" projects done by Mom and Dad's elementary schools' kids, letters from you guys writing into me and other miscellaneous things that people have sent me. I am surrounded by your love, thoughts and prayers. I may have a broken heart right now, but being able to see and feel the support from you all has truly made my heart happy. I don't have good days every day or all day, but with my "A Heart For Heath" wall, I stay strong and know I have to keep fighting. Thank you so much. 

I had a nice day today. Nothing major has changed. I am still trying to hold my own until my heart gift comes. The team did an Echocardiogram yesterday to see how my heart looked. Today we weren't able to talk to a doctor to learn more about that, but my nurse did say there didn't seem to be anything alarming brought up in rounds. I hope to hear more about my heart's condition Monday and if there is any decreases in it's function or if it's still about the same (which would be good). They are still considering moving my ventilator tube to my nose. It's a maybe now. There was also some talk of the possibility of taking me off of the ventilator. That's probably just talk, if we're blunt. I am not a baby whom does well with changes and that would be a big and scary change that could result on me going back onto some form of life support like a VAD or ECMO again if I didn't handle it well. We can not, just absolutely can not let that happen...I don't want to have any set backs and hope that they just let me hang out until my transplant day and not push me too much. One difficult thing about being in the hospital is that your care team always wants to push to see improvements and get you better, but for a child like me, we don't know what my better is. Maybe how I am today is as good as I can be right now; in my condition. The "but" and "ifs" though, they make you second guess and question everything. An "If" example is: If i have more milk during my feeds can I be weaned off of IV supplementation (TPN - fats/lipids)? That would be ideal. So, they try to increase feeds and I fall off the wagon. Back to before square one; no gain in progress. It's right to try though because that's the right thing to do; to try. I have been thru stuff like this several times in my life. My care team, at all three of my hospitals, has always been looking to see me improve and bouncing ideas off one another to give me the best possible effort on their parts. It has to be so hard for them to make judgement calls and keep everyone strait. Especially when my family is so scared of changes, too. They have lost me due to changes failing and they have also seen me improve. It's such a tough journey, but we are really learning to trust. Trust...we just get comfortable with someone and then I crash and we move to a whole new set of faces. That has been a difficult thing. Mom and Dad haven't meet my entire care team here at this hospital yet and I've been here for 1 month and 15 days. It's hard trusting someone you've never met to keep you alive. Mom always puts my nurses on the spot and asks if they are a good nurse or doctor or not. It makes them a little uncomfortable sometimes I think. It's scary though. Mom and Dad have to leave me, their newborn, alone with strangers. So, they have learned to trust a few important people in my life here and are trying to relax a little. Everything is going to be okay. It has too. People ask my family if all of this has "gotten easier" and if they are doing okay...the answer to those questions is No. It doesn't/hasn't gotten any easier. In fact, it has gotten harder and more emotional. Every day they spend with me, they fall more and more in love with me. That makes it hard. It's hard for me too because I am starting to really recognize everyone and I think I miss them when they are gone. The wait is also hard. Mostly because of the stuff I talked about up above. We are doing it though...together we are waiting, healing and praying for this to all be okay soon. My family isn't so concerned with the big answers anymore. The one's that include the "why" and "how" questions. They have just come to terms with the fact I need a heart transplant to live. They are starting to trust in the current people caring for me and know that they only have my best interest at heart. They are talking to some absolutely amazing families that are in current situations similar to mine or that have already gone thru this. It was very scary at first learning I needed a new heart. It broke my family down badly. After time and these great people's stories and advice...we feel more hopeful that my future is bright. Mom told me that one girl, that her and Dad were talking to, had a heart transplant here at my same hospital when she was just a two year old and she is now 27 years old. She said that she had a great childhood. Pretty much normal like the other kids (she just had a lot of checkups at the doctors office). I hope someday we can meet her, as well as the other families we talk too and say thank you for the courage. I need to hear things for my future can be pretty normal if this all goes well. I need courage. It will all work out. I've been hospitalized for over 1,560 hours. I've been on the heart transplant list now for one month, one day. My parents said to mention that I am also now literally an over $2.5 million baby (Grandpa warned them I would be expensive...maybe not this expensive though lol). I have to go for now. Good Night. Please keep me, my family and my someday donor's family in your thoughts and prayers. 

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