Help Nico: Urgent Heart Surgery Needed

Nadia Perez is organizing this fundraiser.

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Hello all, for those who know us know that Nico has been fighting this battle since he was in my womb. He had been doing alright for the past year following his open heart and two caths. We knew that he would eventually need surgery again, but were expecting it to be when he was 4 - 5 years old. 3 days ago we got the news that he would be needing surgery a lot sooner and would be put on the list this following week (July 1st). His full story will be below. We just moved into our own space, finally after some time- relocating to be closer to where his appointments take place & these are very unexpected expenses to say the least.

The funds will be used to pay a deductible needed, other medical expenses/equipment, as well as other bills/food since I will be out of work for some time and I am the sole provider for Nico and my daughter Lylo. We thank y'all so much for any help, a share, and prayers/ positive vibes sent our way. Last time we wouldn't have been able to get through it without the help and words of encouragement we received.

His story: This is baby Ace Nicolas. He was born with 3 critical congenital heart defects before his full term. He was first diagnosed with only a Ventricular Septal Defect (VSD), a hole in the wall between the heart's lower chambers- only to find out a little over a month before his birth that it was actually one of the rarer VSDs. He actually had a Double Outlet Right Ventricle (DORV),the pulmonary artery and the aorta — the heart’s two major arteries — both connect to the right ventricle) with a rather larger hole than the average child with a VSD. He was also diagnosed with a coarctation of the aorta (CoA), the narrowing, or coarctation, blocks normal blood flow to the body. This can back up flow into the left ventricle of the heart, making the muscles in this ventricle work harder to get blood out of the heart, with aortic arch Hypoplasia (AAH).

He had to be given a shot immediately from birth to prevent his heart from clogging. I only had about 10 seconds to hold him before quickly being whisked away to the NICU, then transported to ECHOA - Egleston Children’s Hospital of Atlanta in an ambulance to receive immediate care. I only stayed the mandatory 24 hours after birth at the birthing hospital & rushed to his side at Children's Hospital. He had to get surgery to repair these defects & was on 24/7 close watch with two nurses for 5 days because his heart would suddenly do its own thing. He had some complications after his surgery that prolonged his healing.

Fast forward a few months and he is rushed back in for an emergency procedure since the surgery didn't fully take, and a few months later another procedure. He has had a total of 3 heart procedures, one being an open heart surgery where his chest plate was sawed open hence the healing period, and two cardiac catheterizations. Since then he was doing well, along side with visiting doctors at least twice a week for some time as well as getting a healthy diet down to a t - his diet consists of a strict dye free, organic, wholesome, chemical free as much as possible, farm raised protein type of diet which can get expensive sometimes.

There are many costs that won’t be covered by insurance or Medicaid. My daughter is currently in physical therapy as well. We are asking for prayers for Nico’s recuperation as well as strength, good health & faith for our family, positive vibes, good manifestations, & help from those who can.

The funds will be going towards:

Nico’s & Lylo’s Medical bills

Food

Gas

Bills

I will try to update as much as I can given the circumstances, please know that we are really grateful for the help we receive that being all prayers and positivity, funding, food, gifts, etc !

Thank you so much for reading! Here is a link with more information about congenital heart defects https://www.marchofdimes.org/find-support/topics/planning-baby/congenital-heart-defects-and-critical-

Some pictures of Ace Nicolás ✨

Baby boy right after birth

At the NICU awaiting transportation

His ride arrived and it was time to say bye for now

First time being able to sit with him at ECHOA

Pictures before surgery

He was not allowed to eat for 3 days before his surgery - only taking fatty acids through tube feed

After 8 hours waiting for him to come back we finally got to see him post his open heart surgery ‍⚕️‍⚕️

He was recuperating ❤️‍ one day at a time

05/01/2023

"Happy 1 month to my baby Nicolás My son is doing amazing in terms of recuperating according to his therapists- not 100% there yet but I know he’ll be there soon God willing ❤️‍

— at Children's Healthcare of Atlanta at Scottish Rite." ️

Car seat training ❤️

He graduated CACU & we began the healing journey from home until we had to come back for his next 2 procedures

At one of his weekly check ups they noticed his surgery wasn't fully taking so he went back in

Despite all of this he continued to grow as healthy as he could be despite everything he was going through

09/21/2023

Advocating for his health which lead to discovering that he did in fact that he did need another procedure- making this the 3rd one

After this, following the procedure the doctor told me that it didn't take, and would most likely have to go to the op table for ope heart. However, miraculously, it started to take after the procedure had happened, not immediately as they had expected. This gained more time for him to grow.

He continued to grow and we continued to going to multiple doctors visits weekly, then monthly

His first birthday

05/28/2024

"Starting this off saying Nico is doing much better as of now- however recently he got something called transient synovitis it was a very scary thing since he temporarily lost the ability to walk and to even put weight on his legs. We were discharged from the hospital after he was able to start running again

just want to inform parents that we learned that this can happen to toddlers often although is usually not as severe. This happens when viral infections affect/ settle in the joints causing inflammation and pain. An anti inflammatory med will help with this "

07/10/2024

This day I was informed that he had an obstruction growing in his main heart artery and they began to monitor it.

12/23/2024

"Todays checkup went great ❤️ my baby is doing great and continues to be stable- doctors still don’t know how but he’s doing good he’s graduated to six month checkups now we’re hoping there won’t be any open heart surgeries again till he hits 4 years old or older - thank God & all the prayers y’all have sent he’s now fully unrestricted from all activities + foods

— feeling blessed at Sibley Heart Center."