Our Baby Incredible Hulk

Where do I begin….

Let me start by saying this is why we call our son Incredible Hulk

After 4 days of grueling labor our son Niko was born on 9/12/2022. We immediately noticed he was very lethargic & always super cold. He also was too weak to eat and slept all the time. After a few days I had to start feeding him with a syringe just to get him some nutrition. This had us very worried so we took him to the ER. As soon as we got there they took his temperature and it was 93.4 degrees. The doctors swarmed him & tried to put an IV, but they couldn’t find any veins. So they ended up having to drill into his bone 3 different times to insert the IV. By this time, Niko had stopped breathing. This was the start of every parents worst nightmare. Niko flatlined twice and it was only when my husband screamed “NIKO!!!” that our son came back to his daddy. Niko was then put on life support. After several weeks of being on a ventilator, feeding tubes, MRIs, x-rays, blood transfusion and many many painful pokes to our sweet son, he was diagnosed with a genetic disorder. Niko has a deletion of his 5Q31.3 chromosome. The doctors only know of *8*  other people in the WORLD with this same disorder. Per what doctors have read this genetic disorder means Niko will never walk, talk, or “be normal”. He will be on a ventilator for the rest of his life. He also is fed through a feeding tube in his stomach (gtube) and has a tracheostomy (hole in his throat) to help him breathe and hooked up to ventilator. The doctors gave us the option to send our son to a care facility where we can visit him, or to learn how to care for him and take him home… and also the option of the unthinkable… taking him off the ventilator and giving him meds to make his transition to heaven comfortable. As a parent how do you even choose to let the baby you planned a life with go without knowing more info of disorder just because it’s rare… how does a parent even get put in a position to choose to end your child’s life????? We wanted our son and now this is an option to say goodbye?? No way!!

Of course, we want our baby home with us. So we have been doing lots of training to learn how to operate all of his equipment and try to understand our new normal. My husband and I have not given up faith in GOD and we believe once Niko is home with our love and faith in GOD we can help our son the best we can… after all it’s in GODS HANDS. He has the last say. Niko will require around the clock care, tons of therapy appointments, lots of adaptive equipment, and our complete devotion to him. While we’ve been busy caring for our baby, we’ve had to take this time off of work, but of course, the bills are still piling up. There are no genetic doctors in our state, we have to travel out of state for his appointments and if there is a geneticist in a different country that has any answers we will travel out of country because we are exhausted from hearing doctors say “we don’t know, but what we read is Niko will never do this or that…” “He will never live to be past 25.”  And “his health condition is going to get worse”

This is what they have read… no one really knows anything about this micro deletion.

*update* the oldest person with this syndrome recently passed away from respiratory failure.

Now can you see why we call him our Incredible Hulk? He’s only 7 weeks old and he’s endured more trauma than one grown up in a lifetime and he’s still fighting!!! We are grateful for help in any way during the worst time of our lives.

I posted a picture of Niko his first day in the hospital so you can see what we felt. 

A picture is worth a thousand words and this picture doesn’t show half of what we felt. 

Prayers are greatly appreciated 

Our baby Niko is fighting so we are fighting with him and for him! 

Watch him on KCAL 3 

https://news3lv.com/news/local/nevada-baby-diagnosed-with-rare-genetic-disorder#

As of Feb

March 3, 2023 @9:16pm

Our son took his last breath.

He passed in our arms.

thank you all for your support 

We are Forever Grateful