Maia's had kind of a rough day. On the positive side, the doctors feel that she is "looking a little better than yesterday." On the discouraging side, they told us that was the only good news they were able to give and that she is an extremely sick little girl.
It seems so hard to reconcile the unresponsive babe lying in the hospital bed with my sweet Maia who was running and playing on Monday evening. The physical shell is the same, but that's all. My heart is breaking for my precious girl.
The drains are working well. They have pulled a tremendous amount of fluid from Maia's brain. Probably around 700ml total, just from the area surrounding her brain. Can you imagine the pressure that must have been causing? The purulent material (pus) that the doctors were expecting has started to show up. It's not pretty.
The nurse today has been a great advocate for Maia's pain control. She has supported my concerns to the physicians and we now have scheduled Tylenol with Oxycodone and Fentanyl as needed. It is keeping Maia more comfortable.
Maia seems less responsive this afternoon. This may be related to the pain meds and I hope this is the case. But, it is also concerning. She's having some movements that we are trying to sort out: rigors vs seizures.
Maia has not had anything to eat since Monday evening and has lost a significant amount of weight. Thank God that she had a little reserve to work with! Feeding through her NG (nasogastric tube) were just started about 30 minutes ago at a very low rate. If she tolerates them, they will be titrated up.
This is going to be a very, long journey for our girl. Assuming that things go well, we are told to anticipate at least six weeks in the hospital. I haven't even begun to think about how to manage this. And how do we help Matthew understand. I feel such a need to just be with Maia. It's not that I don't trust others with her. It's that I WANT to be with her, to be close to her. I'm her mom, the one who is supposed to kiss all the boo-boos away. I know how to comfort her, soothe her, how to position her, etc. She is holding tightly to my left hand as I type this with my right. I can't bear the thought of leaving her. And yet, what about Matthew? He's got to be wondering why things are so different. I worry about the attachment issue. Although nana and papa are awesome, he needs to know that Mark and I are still mommy and daddy. That this will not be forever. I don't quite know how to accomplish that.
Again, thank you for your prayers and encouragement. I don't pretend to understand why this is the journey God has chosen for us and for Maia, but I trust that He is with us each step of the way. He is faithful. And He is mighty to save.