Our little fighter Zephyr has beat some hard odds and proved the doctors wrong. He has shown how much fight he has in him to live and be here. He has a purpose here. The doctors were very certain he wasn't going to make it a few weeks back. His care and time was hour to hour and very unknown. He has since been took off the highest strongest ventilator called an oscillator to being put on a conventional ventilator that isnt so loud. He is handling his weening off his high dosages of continuous drip of fentanyl and anxiety medication. He still has a very long road. He isnt diagnosed with a syndrome yet. He has very serious symptoms that put him in categories of certain syndromes but not quite the full symptoms. They were leaning towards Digeorge-syndrome and CHARGE syndrome. He definitely is part of the Rare disease syndrome group tho. He has Tetralogy of the fallot pulmonary atresia and very small lungs yet. He still is missing a few main ribs that enclose his lungs and promote healthy growth for his lungs. His main issue right now is his immune system. He was born with basically no immune system. He hopefully will be healthy enough in a year to get a thymus transplant at Duke university. Theyre the only place who does these transplants. Our job is to make sure he stays infection free until then. He is an isolation room and on a ventilator. Hes intubated which means the ventilator goes down his throat n breathes for him. With one of the many symptoms of a syndrome his nose hole to help him breathe is beyond narrow almost closed so he has to be intubated until he has a surgery to open his nose hole or a tracheotomy. With all these issues he has showed how much fight he has in him to be here. The nurses see his little personality coming thru the older he gets. He lets everyone know what he likes doesn't like what he can handle what he cant handle. He is still VERY sick and the doctors are learning from him. As we been told he is a very unique baby. He is showing the world he has a purpose here and has been feeling every prayer said for him. His father and I have never been in a situation like this before. We had an understanding Zephyr was healthy while i was pregnant. The day he was born he was flew out by jet from Fargo ND to here in Minneapolis. He was and still admitted to University of Minnesota Masonic children's hospital in the NICU. We have been staying at hotels here in Minneapolis for the past 8 weeks. We raised some money on FB and it helped so much and we are forever grateful. Right now we will be in hotels until November and from there we will be moving into the Ronald McDonald house with our 2 other children. My husband will be working again soon hopefully but is planning on staying by Zephyrs side and my side if anything happens in these next few weeks. We have become a lot closer as husband and wife thru this and seeing exactly the better or worse thru sickness and health vows.. we need each other to lean on when we have our moments of crying and frustration because everything is out of our hands and control and all we want is our little baby to be better to be healthy.... With Zephyr things can happen very quick he isnt quite stable yet. Soon as he becomes stable my husband will be going back to our home in Moorhead Minnesota. We are asking for help for our hotel stays and all that goes with living out of hotels and gas money our older daughter is still in school in Moorhead and staying with my mom at our home..we also have a few medical bills that our insurance wont cover like Zephyrs flight here also for our rent and bills back home. My husband is a veteran he does recieve a small check but it doesn't cover much. We didn't know it would cost this much here. If only we lived closer this wpuld of been easier but a 3 to 4 hour trip there n 3 to 4 hours back isnt possible. Trying to be here by our little fighters side and keep our family together is pretty hard but were being blessed when we least expect it and knowing we're not in control but God is.. its been very hard to accept that and let God take over but we have and are. If you cant donate financially please say a prayer for our little warrior Zephyr and all the other babies in the NICU there are a lot here :( thank you for your time to read all this. You can follow our lil Zephyr on facebook with his lil journey as he heals. Follow : "Zephyr our little warriors journey" on Facebook.