It went down almost 2 at the early morning draw (330a) after the IVIG. However, it was back up 1 at the midmorning draw. They drew again at 8p, so I'm trying to wait patiently until 9ish to call and see if they got the results back. I'm preparing for it to go up again because that's the only way I can handle it if it did.
I did get to get him out twice to feed when I was there, and he latched on great the first time. The 2nd time was still sleepy and just let it hang out in his mouth, but I eventually got him to take some bottle. They only want him out from the lights for a short period of time, so if breastfeeding isn't working within 15-20 min, we pop the bottle in. He's being supplemented with formula if needed because it's super important to get him pooping and peeing as much as possible to try to get the bili out. My milk is FINALLY in, so I've been able to at least bring some for him as well.
On a side note, I'm pumping every three hrs, so of course that includes the middle of the night. I can back to bed after the 230a pump, and my H says 'where'd you go?' Um to pump duh. 'Oh, you have to do that at night too??' It's like he doesn't rememver this at all from the first time lol. Then today, he told me how he may have to sleep with Blake if I'm going to wake him up all the time with my alarm. LUCKILY he was kidding, and realizes he's borderline in trouble since he is getting uninterrupted sleep right now!
Thinking of you and baby Colton. And laughing at your H
I also want to tell you that getting pheresed does have more risks, but we do plasmapheresis on kids every day and I have yet to see a reaction or serious side effect.
Hope his levels go down tonight and it starts a downward trend for good!
Oh my goodness I am sorry you are both having to go through this when he's so tiny and young! He's super handsome, though. Hoping this next treatment works and he's home with you soon!
Emerson Kate, born 38w5d on 4/6/12 at 6:02 p.m., 5 lbs 13 oz and 18 3/4 inches. Lucas Matthew, born 39w5d on 4/11/14 at 8:20 a.m., 7 lbs 4 oz and 20 inches.
If you need help carrying your H's body, just let me know. ;-)
Lol. With many more of those comments, I just might need some help!!
although, my BIL told my sister when they had their child, that he couldn't help with any night feelings because he needs at least a solid 6hrs of sleep and since he was working and driving, it was very dangerous for him to have less sleep because he could get in an accident if he didn't get enough sleep. Dead serious. I told her that I'd be telling him quite a few choice words if he said that to me. She said she really doesn't like her husband the first couple months after having a child.
Thinking of you and baby Colton. And laughing at your H
I also want to tell you that getting pheresed does have more risks, but we do plasmapheresis on kids every day and I have yet to see a reaction or serious side effect.
Hope his levels go down tonight and it starts a downward trend for good!
Thank you for sharing that. I wish it would either go down, or just do it so it's not so up and down! I realize that's not very rational. .
Post by creamsiclechica on Mar 7, 2015 21:31:59 GMT -5
I am praying so hard. I just jumped to click this when I saw you were the last person to post. You are doing amazing, I mean that. You are absolutely an outstanding mother. Sending so much love and hoping for some news (hopefully positive!) soon. Hugs!
Up to 16.8 from 15.9. . She said at this point, they are going to wait until the next draw (4a) before doing anything. She said his level would have to be 20 before they would do an exchange right now. I hate, hate, hate this waiting game.
creamsiclechica - thank you - truly. H and I are just so frustrated right now. He wants them to just DO something. It's hard to just see it going up and up.
@therealmc - yes, I have a blood condition which is why they monitored me so heavily during pregnancy in which my blood gave baby antibodies which is creating hemolytic disease in him. We dealt with this with Blake as well, but not to this extent. It's my understanding that the more pregnancies, the chance the baby could be more affected so they aren't surprised by this. We aren't surprised he had to go to the NICU, just that it's been so up and down and much more involved than what we dealt with in Blake. One of the many reasons this is our last child.
The level of acceptable bili constantly changes based on his age, so the older he gets, the higher it is allowed to be. I think that is part of our frustration - not knowing how far away from 'ok' he is. Which is a question we are going to ask today. I missed rounds yesterday, but am hoping to catch them today to get some more info. It's just tough waiting and waiting, but seeing the number still go up. I 'think' that even if it goes up some now, as long as it's not a big jump, it means he's fighting it still which is why they are still waiting. BBT I thought with Blake that after he had the IVIG, all his numbers went down. But it was 3 yrs ago, so my memory could be jaded.
Post by orangeblossom4 on Mar 8, 2015 5:44:56 GMT -5
I'm so sorry the numbers didn't do what we were all hoping for. You all are doing such a good job of hanging in there. I hope and pray the 4 am draw was better.