Setback

Yesterday, they took Spencer off of another light (so he's down to 1 light and a bili blanket) and removed his umbilical catheter. We were so happy and felt like we were making progress and would be bringing him home soon.  However, this morning, his lab came back showing that his bili went up again. He has a new NICU doctor this week and he's ordering a test tomorrow to see where the level of anitbodies are still in his system (the antibodies that the transfusion didn't get out). We're pretty much playing a waiting game right now. If that test comes back high and his bili goes up again, we could be looking at Spencer being in there for another week or more. If it's not high, and his bili goes down, then maybe 3-4 more days. I'm struggling so much trying to be with Avery and Spencer, they both need me. I feel like I don't even know my son and haven't had a chance to bond with him. We don't really get to hold him, only when he eats and then right back to the lights (plus, when we do hold him it's with his bili blanket-which is bulky, so he really doesn't get to snuggle with us or get cozy). So, it's very difficult because we aren't getting any bonding time and he just wants to be held sometimes. He's eating on demand, so we're at the hospital all day long then we bring Avery home at night to bathe her and put her to bed and I stay with her at night and Artie stays with Spencer. We eat when and where ever we can (though it's mostly just important for Avery at this point). Our parents have not been around for us at all during this, so we've pretty much been taking everything on by ourselves (except for Artie's sister-in-law and brother staying with Avery while I was in the hospital and my sister watching her a few times-thanks for all your help during that time!). 

Spencer is eating well and all other parts of his body, so far, are functioning great. He is pretty much a 'celebrity' around the hospital. Everyone knows about him because of the rarity of his situation. We know that Dupont (the hospital) has not done a transfusion like his in at least 6 years, maybe more-that's how rare it is. I feel so thankful that, being something so rare, they were able to help him and get his blood breakdown under control enough to let his body work to get rid of the rest. That's about all for right now, until we have the results tomorrow. I'm hoping this post even makes sense to everyone-I'm a little out of my mind right now and so heartbroken that I can't really think clearly. We are so thankful for the continued support and prayers for our little guy.