Quinn is still off of the pace maker and his heart rate changes every few minutes, no matter what he is doing. He still has times when it skips every other beat, and times when it beats normal. He is still taking moms milk through the tube in his nose, but has had to cut back at times do to gas build up in his gut. I am guessing that the gas is what bothers him the most, since he cries the hardest when his belly becomes distended.
There have been times when I would make jokes about my friends and family who would gleefully celebrate every little thing their child does. Well, now I cheer my son on whenever he passes gas. If he doesn't, he won't get more of mom's milk. I asked the doctors if there were any significant risks of staying on IV nutrients for long periods. They mentioned potential liver problems and development of slow motility in the digestive system. (I'm considering sending a sign to my brothers goquinngo website that says "fart Quinn fart!")
The staff here at the hospital have become increasingly watchful and perceptive of Steph and I. They get somewhat concerned that we don't often leave the hospital. We have been visited by a minister and a social worker who check on our moral as well as do all the nurses and doctors. Our situation can be tough, but it certainly isn't bleak.
People talk about my son and the things we've endured as a family putting things into perspective. Being in an ICU has helped me relate to that. I've encountered things I've never had much exposure to. I see other new parents coming in with children having a wide range of conditions. I've met parents of infants with cystic fibrosis, and have seen babies with physical deformities and other afflictions that force me to marvel at how fortunate good health is. I've acquired a better idea of how many things need to go right in order for a baby to be born healthy. I'm thankful for the success' Quinn has had since he was born and I get excited about the life he has ahead of him. Though Steph and I have had to find ways to cope with frustration, we know enough to be grateful.
As I expected from well before he was born, patience has been one of our real challenges. But we have a son who has overcome much, and is surrounded by doctors with tremendous capability. He still has a bit of a journey toward recovery. But if nothing else... at least he's got his looks.