Our journey hasn’t been easy from finding out we were pregnant with twins, then finding out one of our boy’s has chronic heart disease (CHD) , having our boys At 32 weeks gestation, weighing in @ 2 pounds each & becoming NICU parents. overwhelmed by all the NICU routines daily weights, new medications & dosages, IV fluids, feeding tubes, ventilators & oxygen settings and so much more. It’s not an experience any parent want for their newborns or themselves to go through. It means being separated from your baby & relying on strangers to be the main caregivers for you children & worrying about your children long term wellbeing. As a preemie parents, we didn’t experience that happy pregnancy. We didn’t get the picture-perfect moment of holding our baby’s after birth. Instead, Our children were whisked away in an isolette, leaving us with empty arms and an aching heart. We learned to be patient and knowing that slow and steady wins the race. After a month and seven days Jonathan was able to go home but Joshua wasn’t. As each day passes the time felt longer and longer. Joshua was scheduled for his open heart surgery on Oct ,15th but it got canceled because he caught a cold, yet another delay. Finally on November 5th Joshua was able to have his first open heart surgery and it was serious. The doctor explained to us Joshua has Pulmonary vein stenosis on the left & right side of his heart which is the worst case scenario & another whole & a narrowing aorta but we were relieved the surgery was a success and very hopeful for his recovery. His father & I sat & prayed for his recover within that 72 hour time frame. Joshua showed us how strong he was . On nov 28th , he progressed so he's no longer needed to be intubated. he's was back on the CPAP but it was short lived. Joshua had to be re-intubated again. Joshua was at standstill with NO progress. The doctors call us in to discuss what’s the next step for Joshua. His was intubated for so long that he had to be to be bagged 2-3 day / night to bring him back. The narrowing in his aorta was back. He had developed chronic lung disease from being born @ only 32 weeks gestation which played a big part in his breathing. Now the doctors wanted us to start thinking about putting in a tracheostomy & a feeding tube. An start thinking about Palliative care Which was our worst nightmare. While waiting for our little warrior to get better to get the trach and feeding tube. We got a little good news about Joshua. He was doing a little better day by day so the doctors decided to hold off on doing the trach & feeding tube to see how he progress. The doctor wanted to go back in and repair aorta because it was narrowing again. so they took Josh to cat lab to see if they could do any interventions for him and either put a stent or balloon his aorta but they wasn't able to do anything for him but was able to get a good view of the heart. The doctor decided to give Joshua another chance & go in and repair his pulmonary veins & his narrowing aorta. Joshua had his second open heart on the 22 of January .. After recovering from his second of open heart. It seemed like with every good news we got there was bad new to follow. Joshua took a turn for the worst yet again And needed a new intervention Called ECMO. Extracorporeal membrane oxygenation, also known as extracorporeal life support, is an extracorporeal technique of providing prolonged cardiac and respiratory support to persons whose heart and lungs are unable to provide an adequate amount of gas exchange or perfusion to sustain life. As his parents we felt it was to much for his little body and was looking for a second opinion and fought for Joshua the best way we knew how but our little guy was tried & his heart & lung began to fail. Doctor told us that he had a 2% chance of serving the night but as much as we wanted him here with us we didn’t wanted him to suffer anymore and allowed our little fighter to go on his own terms. Joshua lost his fight on March, 11th , 2019. Our little Joshua was a fighter. He was love by his entire family.
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