The last few days have been crazy. Good times with family but also very hard emotional times with Olivia and talking to the doctors and just trying to get some rest. I am starting to come down from the "just having a baby" high to the "everything is sinking in and becoming very real" high. I'm struggling.
Olivia is still stable. I've gotten to hold her a few times and I just love her so much. Despite her problems I don't think I could feel any greater love for her and I ache so bad for her to off the vent and in my arms at home.
I told some of you that she was on oxygen but not a ventilator-I misunderstood. She is on a ventilator. It's not breathing for her but it is helping her get the amount of oxygen she should be getting. She came in on 100 (which is the highest) and they've been able to get her down to around 55 but that's still not good enough for to yanked off of it. A normal amount that you and I would all be breathing on our own is 20. We can see on her monitor how many breaths she is taking on her own and how many breaths the machine is giving her and it's about 1 in every 5 breaths that it's giving her. Her heart is fine and as far as we can tell all her other organs are fine too. Her doctor said yesterday, which was very hard to hear, that she thinks if she took her off now she would not survive. She ordered a treatment of nitric oxide (not laughing gas!!) which is supposed to relax the blood vessels in the lungs and help with all this breathing stuff. So far it looks like it's doing what it's supposed to be doing but how fast and will it keep helping are the things we need to wait for. Once they started the treatment she was able to go from 68 to 55 but she's been at 55 for about 24 hours.
We also had a family meeting with the doctors and the genetics team. Olivia does definitely have Trisomy 13. We didn't expect anything different but the trail that that conversation goes down is a hard one. Since there is nothing other than "comfort care" to provide we had to talk about what to do for her and what not to do for her. (Terrible conversation to ever have about your children) The doctor agreed that continuing treatment for her now where she's at is reasonable but if she would take a turn for the worse what would we want? I won't go into all those details but we know that if she would get worse there would be no turning back because of her diagnosis. They don't see any lung disease so they think that her breathing could be a result of her condition OR her delivery in which case they are treating her like a normal baby since a lot of time they get over this "hump" in the first couple of days. We will know in another day or two if she is going to be able to be weaned off of the vent or not and at that time we will have to decide what we want to do. Do we want to remove it and see what she does (yes it can be put back if we decided that) or would we want to leave it in even if it's not going to get better and then does that mean life? It's all so hard and so much to think about, worry about, cry about. I want her home but at the same time I am praying to be prepared if that doesn't happen.
What we need prayer for right now is strength and guidance. This is the hardest thing we've ever been through and looking ahead it's hard to see that light at the end of the tunnel. Also guidance for the decision we have to make and the ones we will have to make.