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My angels story. My baby was diagnosed with Tetralogy at 2 days old and Digeorge at a little over a week old. Heartbreak is an understatement. His dad and I lived at the NICU for over 3 weeks. He is my 4th son by the way and my 1st to have this. He was kept at the NICU for so long because of feeding issues and his calcium was low (labs everyday at 5am was the worst for my little love) so he was put on calcium supplement and calcitriol.. since then he was taken off calcium because it has maintained great but he still takes the calcitriol once a day. He was also on a feeding tube and that was taken out once he could eat 2oz on his own and then we went home. Since he's been born it's been non stop Dr's he literally has a team. But when I say he is amazing I truly mean that. He is hitting all this milestones was rolling over at 4 weeks old, smiles all the time, talks to us, tracks sounds, makes great eye contact, holds his head up great. The only issue is his little heart is burning calories so fast weight gain is a problem PLUS he has strider (noisy breathing/floppy tissue above the voice box) which gets better on its own but in his case might have to be repaired before surgery because that's also burning calories making it harder to gain weight. He's currently on 24 cal and that has helped. His surgery is scheduled for November 11th but the roof of his mouth was blue tonight while he was crying I noticed it for the 1st time and his oxygen level was 84.. but it climbed thank god and stayed above 90 so we'll be keeping a close eye on that. BUT really with all of this I focus on the positive with him he's just so amazing such a little fighter wants so much to be happy .. I honestly forget all this is happening until I go to one of his many dr appointments or his home nurse comes here. I really need to hear positive stories, success.. great things children with TOF and Digeorge have done and what they've overcome , the difference after surgery. This is what all parents with children that are battling things like this need to hear.. there has to be light at the end of the tunnel. So please share the good things <3 Thank you and God bless you all and your beautiful babies
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