Baby Milo

Milo was  born at 35weeks and 1 day old. He's 40 weeks and 3 days now. Erin ( a former coworker and speech therapist) and Fransony (her husband) knew he had heart defects in utero but didn't expect any of the other issues. Initially he had lung issues from being born much earlier than his due date. A week after being born Erin and Fransony were called in the middle of the night and we're told that he was being emergently transferred to ccmc for possible NEC (necrotizing enterocolitis) and if he required surgery they were the ones that would be able to perform the surgery. He had to have a broviac line placed in his heart to deliver medication and draw labs for the long term as they were not able to keep peripheral lines working on him. As well, they were not able to get one inserted as a backup as he was so poked over for lines. Luckily he only had to be treated with a 10 day course of antibiotics and complete bowel rest. Nutrition has been a challenge since then. He was receiving TPN (nutrition by his vein) but that didn't seem to agree with his body and he began showing signs of liver issues (high ammonia, prolonged clotting and intolerance of protein in his TPN). Ccmc was in contact with the liver specialists at Yale to discuss his plan and other tests they would recommend. He has had more blood tests, urine tests, ultrasounds, an MRI, buccal biopsy, and extensive genetic work up with no end in sight and no answers as to what has caused his liver issues. Ccmc felt there was nothing further they could do for him and suggested that if a liver transplant was indicated that they should start the process and become familiar with the staff at Yale New Haven hospital. So 4 weeks after the stay at ccmc they left for yet another hospital, more tests, countless doctors and specialists. Yale at the moment is telling them that he's not in liver failure but has liver disease. On Monday, 12/19, Milo may need  to have a liver biopsy if he is medically stable to perform such an invasive test.  Until then,  they have to see him struggle to tolerate feeds, fight with the vent tube and desat (when oxygen levels drop)when the doctors poke and prod him. It has been 5 and a half weeks so far with no end in sight. Fransony recently lost his job due to the excessive time that he has taken off to be with Milo and Erin. Thankfully Erin is still on maternity leave however that will soon come to an end. They had some savings which are just about exhausted. They didn't want to depend on any financial help, however, reality is that they don't know how long this may continue  and how much all of this  will cost. Thankfully Fransony will be starting a part time job this month but it is not full time.  They have been traveling back and forth to the hospital (at least an hour ea way) and only go home to pack food and to get more clothing. They could use the financial support but he also need all your prayers and positive energy to pull through this so Milo can go home with his parents.  Pray also for the medical team to find out how to most effectively treat  him. Pray for that his parents, and family will stay strong as they are all staying by his side and providing as much love as they can. It would be great to see him without hoses and breathing  on his own for starters! This baby should be sucking on a bottle or pacifier, not on a vent tube. He should be cuddling in his parents and grandparents and other families arms. He should be in his home back in Danbury.  This has been very exhausting, both emotionally and physically for Erin and Fransony! Thank you for any amount you could give and for all the prayers! We will keep you updated on his progress. Keeping the faith! They need a Christmas Miracle. God bless Milo and his family! Xoxo