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A New Year

The holidays are over and it feels strange!



Time continues to pass as we sit in this hospital. It's a weird mix of "can the weeks and months fly by so we can be home with him", and "I want to soak up every little second and feeling because we don't know what tomorrow holds" kind of feelings.


But we received our Christmas Miracle.



Christmas Eve, we held our breath as Noah was removed from Milrinone. He was weaned off of it after the Norwood, and I couldn't even tell you when.. it wasn't a big deal or obstacle "back" then. What feels like years ago was only a few months ago. To think about what Noah has been through in just his few short months of life- it's hard.


But this time. This milrinone wean, it was the last hope of "going home with HIS heart" we had.



The Glenn surgery gave Noah complete new physiology and blood flow but thus far it hasn't helped Noah's heart improve. Each echo has been status quo; the Tricuspid Valve Regurgitation is still upper moderate to severe and the overall Heart Function is upper-moderately depressed... it's unfortunate... but we are celebrating the news of stability... boy, have our perspectives and expectations changed.


We look at Noah now, smiling at us, playing, his color has improved... and this, how could his heart still be the SAME when he was purple, paralyzed, intubated... when the monitors read scary numbers. How?


But now, we have brief moments that we "forget" he's so sick, and it feels good.


We know, you think it too. He looks good... he looks better. The harsh reality is that he's not and things can turn so quickly.



Many have asked- is Noah getting a heart transplant?


Well, it's just not that easy. In a "perfect" scenario, we can manage Noah's heart failure at home and keep his native heart as long as possible. Because even though a new heart sounds great.. there are a LOT of risks and complications that come with it. It's trading one set of problems and what-ifs for another.


Noah will still need his Fontan, the third heart surgery for HLHS and this takes place typically around 2-3 years old.


When I last posted we had just weaned Noah off milrinone successfully and we were nervous at any change we saw on the monitors. We knew from previous experience how fast things can go south, how fast Noah's heart can just give out. And the reality is, it can still turn, and heart transplant will never be off the table.



During this time, I watched from afar, a popular girl on social media lose her baby boy from SIDs on Christmas day. He was just a little younger than Noah. They made the selfless decision to donate his organs. It was the side of organ donation that's hard to think about. I often get wrapped up in the statistics. The odds are against Noah. But it was a reminder that healthy even if he was healthy, no day is ever promised and all I can do is just LOVE HIM.


But I hurt for this mom, for many reasons. One day, we may be praying for a heart, just like that sweet boy. And at that moment, I found myself holding Noah, in the CVICU Room 1603, weeping, giving him so many kisses, soaking up every moment. The nurses paraded in, probably thinking I had lost my mind, but offering to take Noah if I needed a break. But I just tucked my head into him and held him near. I can not imagine life without him and I hope he feels how much Brandon and I love him.



While all of this unfolded and this mother shared her vulnerability on social platforms, I read comments and people ripping her apart, judging her as a mother, blaming her, criticize how she was grieving..


It made me mad, and I was heartbroken that people could TYPE such hurtful things behind a screen, to someone they most likely know nothing about, and for what purpose, other than to bring someone down? How on Earth could there be so many hateful people?


It made me question how much I share of this journey on social media, and this blog. I put myself in her position and I probably would have shut down, deleted everything.


But that would be letting evil win. It would be focusing on the 200 hateful comments, and not appreciating the 2,000 uplifting ones.



We too have had people say some pretty harsh things that have made me want to delete this page.


We have lost "good" friends that don't know what to say, but we have gained a community of strangers that SHOW UP. If we don't respond to your message, please do not take offense, it doesn't mean we haven't read it or don't care. If we are short with your questions, it's because we are probably trying to comprehend everything ourselves. At the end of the day we are tired, we are giving Noah everything we have. We don't know what we want for dinner, or when Noah's tubes will come out.. We just take everything moment...by moment. But all your love, it doesn't go unnoticed, and we are already talking about how we are going to pay it forward because we know how much your sweet gestures mean to us during this time that we feel alone, scared, misplaced, and just unsure of everything.


So where are we now??



A couple of days after the milrinone wean, we checked Noah's BNP and it was elevated, letting us know that Noah's heart was working harder, it kept rising and eventually had tripled.


But then we "dried him out".. basically the doctors added more diuretics to offload any fluid (Noah has always been on these). But clinically he looks bad, sunken eyes, elevated heart rate, irritable, vomiting.. We were anxious as we waited for the moment that we got the results of his BNP, expecting that they had risen even higher due to his poor clinical state, but to our surprise, his BNP went down from 600 to 199..I cried!!! An unexpected miracle.



Noah has come so far since. The next day, I had my yearly cancer scan at MD Anderson, I was nervous about them due to pregnancy and the hormone changes with my thyroid but they were CLEAR.


And on that same day, while I was at MDA, The doctors decided that after 70 days, Noah did not need to be in the ICU setting anymore. Brandon moved our things and went with Noah to the CPCU (Cardio Pediatric Care Unit) which is also known as the "step down" unit.



What a breath of fresh air. Fewer beeps. Darker, less invasive atmosphere. The first night as we were bathing Noah, the nurse removed ALL of his stickers, the EKG ones, everything... All I could do was pick him up and walk around the room. It was the first time I had seen or held his whole bare body, no IV, no stickers, no wires!!! What a blessing.


As we were still embracing this new "sweet life", just two days later, we were shocked when the doctors decided that Noah didn't need to be monitored anymore..at all...as long as we are in the room with him, which is always. No pulse ox... no EKG wires. We can walk the halls in the CPCU. We can lay on the couch bed in the room and all snuggle, as a family. I still can not believe it!



But we knew while we were here that our main focus and obstacle would be getting Noah to eat. the past few weeks he has been completely adverse to.


We had made some steps forward, he will put his sippy cup and bottle in his mouth by himself.. but he hasn't eaten anything by mouth yet.


Five MONTHS old

Unfortunately due to the severity of Noah's heart failure, they will not let us go home HOME with an NG tube due to the risk. Just the slightest hiccup, could be fatal to Noah. So now, we wait. This week we should have answers on if they will let us go to the Houston apartment (directly across from the hospital) with the NG tube. They have been very clear with us that they have NEVER discharged a baby with Noah's level of heart failure with an NG, but trust that we will be at the hospital if the slightest thing happens or looks off.


This is only a temporary option and we will be scheduling the Gtube surgery (Feeding directly to the stomach and is located on the belly) for the February timeframe. We are scared to put Noah under a procedure again but have accepted that this might be the best option for him and his heart and is the only way that we can go home.


Laughing!

Thank yall for your love for Noah, for us, and our family.


Please pray for Noah's heart to gain miraculous strength!




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calcats
calcats
14. tammik. 2020

Kasie, our hearts go out to you, Brandon and Noah. We continue to give thanks to our Lord each day (sometimes multiple times a day) for Baby Noah's regenerated heart. We feel like we know him already; he's a precious little guy and God has a plan for him, but only He knows it. We love that you are such precious parents and pray for your continued strength that only God can give. Love you all.


Ron & Maria

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