I have to tell the heart breaking, on going sad story of what my family is currently enduring. My dad passed away 8 years ago this upcoming Christmas. He died unexpectedly after an error during a routine surgery. He was taken from us far too soon. As you can imagine it saddened our whole family, leaving a hole in all our hearts. He died before any of the grandkids would remember him. My sister announced her engagement months after his passing, sadly without our dad to walk her down the isle. She married about a year later. Not long after my sister and brother in law said their "I do's" they tried to get pregnant. They tried for years, without success. Both went in for testing, but nothing definitive came back. They kept trying, but still no such luck. My sister and brother in law wanted kids so badly, they decided to try IBF. My sister got her first round of IBF which did not take, more discussion on the next step since IBF is not cheap. They decided to give it one more try, thankfully they did because 9 months later on May 9, 2018 my little baby niece was born, a miracle baby. She was as healthy as can be, and our entire family was celebrating with joy. Just a few short months later, my sister and brother in law announced there would be another addition to the family, they were expecting their second child. This time it was a natural conception. You could imagine how elated we all were. My little nephew (who is named after our dad) Edward was born on June 18, 2019. He was born with heart defects, holes in his heart, uneven blood vessels, etc. Within days after birth he had his first heart surgery. He came out of it with flying colors, despite all the tubes and wires connected, including a ventilator and feeding tube. It was tough to see but we prayed and knew he would get better. But quite the contrary. He seemed to get worse. He would have another procedure on his heart just weeks later. After that procedure it seemed he was well on his way to coming home. His eyes were open, the ventilator finally removed, feeding tube still in place but he seemed to be a happy little baby. He would even make cute little noises, and what appeared to be smiles. He was awake and alert more days than not. Everyone thought there was light at the end of the tunnel, until his lungs started failing him. His lungs aren't growing as strong as they should be. During this time he had a biopsy which came back saying he had a condition called Pulmonary Interstitial Glycogenosis (PIG) a fairly new condition, yet again affecting his lungs and breathing, along with severe pulmonary hypertension. There became more procedures, one right after another and with each procedure it seemed to set him back, more tubes, more medications, more time in the hospital. Still not improving and becoming agitated, the doctors decided to medically paralyze him and then put him on ECMO, basically a bypass machine that pumps his heart and breathes for him. He was on that for a little over a week, was weened and finally taken off. Again, thinking that getting off the machine was a positive thing, but he still became so agitated he needed to be sedated yet again because of the uncontrolled blood pressure and heart rate. It sounds like the doctors are running out of ideas, they are at a loss of what the next steps are. The fear and frustration intensifies. He just had his ventilator removed and had a tracheostomy on Friday. But less than 24 hours later on Saturday night had a severe “episode” sounds like it took them longer to bring him back with chest compressions and bagging him. He is 2 months and 3 weeks old today and is still in the hospital with no date to come home. The plan is to keep him heavily sedated, medically paralyzed, continue administering medication after medication in hopes he will get stronger and eventually get taken off all the machines without further "episodes". More than anything, we are all hoping and praying that he gets healthy enough to go home to his loving family, two amazing parents and an older sister he has yet to meet. I want to credit my sister and brother in law, I don't know how they do it. I can't imagine not being able to hold your baby, or take him home to watch him develop and grow. They are incredible and dedicated parents. While going to see Edward every day, they are also trying to take care of a 16 month old, all the while both working full time jobs just trying to get by. There is not enough hours in the day for them, they are keeping it together yet have so much on their plate. My sister and brother in law were in the process of building a new house after Edward was born because their current house is small and compact not big enough to hold two kids, two dogs, a cat, and themselves. They ended up having to put that on hold since the finances are all going to medical expenses. It's still an ongoing battle but with thoughts and prayers, I know he will heal, get strong and healthy enough for my sister and brother in law to take him home, soon. It's hard when one day you see your baby alert, awake, and smiling and within hours he's sedated and motionless. They are a couple of the strongest people I know who in my mind are deserving of a healthy baby boy, which would be the best gift ever! Edward is a special little boy, he is a fighter and given the chance he will make a huge impact on other people’s lives, just by his story alone. I believe in miracles, and I believe he will be yet another miracle baby!