As I think back to just a few days ago, in that 24-48 hours post surgery, I remember how scared I was that I was going to lose my little girl. I would sit in the chair gripping a pillow in my lap watching them make changes to her vent settings, bring in new equipment and watch the monitors. I knew they said that the first 2 days or so post surgery could be rough but I was really not as prepared as I thought I was.
Now, Liviana seems to be cruising along, just as she should. The last couple of days have been nothing but weaning. When I last spoke to Dr. M. on Friday he thought she could possibly be extubated in a week. I could not believe it. Since then, she has been weaned down on the nitric and it looks like it might be gone altogether by late today or tomorrow. During those weans they have not had to increase her oxygen, which is really great. They are also continuing to wean down her pressures and her oxygen little by little. She is completely off of her Dopamine, which was there to help regulate her blood pressure. She never really had any blood pressure issues so it was more of a precaution and is now totally gone. They started weaning on her Morphine a couple of days ago in little steps, which she seems to be tolerating so far. They were trying to keep her with her right side up alot to help with her little lung collapses. Her x-rays are starting to look a lot better so she now has more positions in her repetoire, which I'm sure she likes.
There are still the rough moments. Two nights ago she started de-sating and they suctioned her a few times and got a huge glob of mucus out. It happened a couple more times that evening and they ended up changing her tube out. It happened again this morning when I came in and she seems to be coughing a little, trying to get gunk out of her throat (or perhaps she is trying to get that pesky tube out). Those are such scary moments where we feel so helpless. I just want to pick her up and make it better. She hates being suctioned and cries sometimes which absolutely breaks my heart. Since she is intubated no sound comes out when she cries and It is so hard to not be able to do anything for her at those times.
I am so excited that tomorrow, the surgeons are going to have her stomach tube removed and will likely begin feeds. She will finally be able to start getting the benefit of the colostrum I pumped for the first week followed eventually by the milk. I continue to pump every 3 hours or so and so far, so good.
The most exciting development in the past two days is that Liviana has been opening her eyes more and leaving them open for quite a while. Prior to today I had seen little tiny glimpses of eyes (mostly prior to her surgery day) but never her eyes fully open. She is just so beautiful. I think her eyes are going to end up being big and brown like Miles's eyes but only time will tell.
Brad stays in NICU at night and Liviana and they have daddy/daughter bonding time. Aria and Miles are doing okay. There are some little meltdowns here and there, which we completely understand. Aria asked yesterday morning while on our way to Target if she could go see Livvy. I told here that Liviana was probably sleeping and Aria said, "Maybe she is up now". She loves her little sister already and knows she is sick and the doctor's are helping her (She always says, "Maybe Aria help too").
I think that is all for now. I will try to update everyday. We continue to appreciate the support, caring and prayers from everyone.