We have officially put our baby girl through the ringer today and she is not having it! Everything started off great: chest tubes out, check. Pacer wires out, check. Breathing tube out, check. Except she's not liking the last one so much. Around 6 Vivi's heart rate starting picking up and by 7:30, Momma Bear was not having the high 180-190 numbers. We have been on a roller coaster since trying to bring down her heart rate. It is currently 12:50 am, and the poor thing is, I am sure, exhausted. Her little chest has been moving, moving, moving for hours. She is on high oxygen levels and if this isn't under control in a few hours, back to the breathing tube she goes. Needless to say, I will be one of the first to see the sunrise--good thing I have a room with a view :)
This is a rough night. I hate seeing her working so hard! There is nothing wrong inside. Echo was great. X-ray perfect. Awesome pulses, temp normal. She is just having complete withdrawl from her ventalator. There is nothing I can do--I can't breathe for her, I can't hold her--quite frankly, it sucks. I just want to scoop her up and soothe her, not that she is fussing or seems agitated, she's on more pain meds tonight than she has been the past few days, it's just the maternal instinct that I have to supress. Rod and I have been discussing how blessed we really are that we haven't had more nights like this. I totally agree. It is just such a shock to go from such an amazing kick butt day to a 'what's happening' night. I am hoping that Vivi will snap out of this like she has all her other slumpy moments. It takes her a few hours more than most, but then she is ready to go. If she continues this pattern, we should have this under control by 6 am. I just don't want her to be intibated again...but then I think, "did I make a bad mom choice by allowing all this to happen in 1 day?" I only want what is best for her, and I feel awful thinking I could have prevented this if we took another day. But then I have to let go of that and remember the key word for this journey is TRUST. Today's Gospel was perfect for that theme. When Christ asked Peter to come to Him on the water, without hesitation, Peter jumped out of the boat and only after he took his eyes off Christ did he sink. What a great reminder to keep my eyes on Christ. To believe the nurses, doctors and therapists He puts in our path are going to help us make the best decisions. Christ says to the apostles on the boat, "Take heart. It is I. Do not be afraid". Perhaps those words for me today as Christ knew I would be in this place.
My heavy heart tonight is torn between Vivi and a few families I have met while here. One is on our floor--a sweet family from Kentucky. their son was admitted for his last heart surgery. Talking with his dad, he had told me since the beginning Grayson had problems with recovering after the surgeries. This one has been no different, and in fact, incredibly worse. He just turned 4 on Sunday and today his family has all been coming up to see him after an emergency procedure this afternoon. Literally I feel my heart breaking when I walk by their room. I cried at dinner when his grandparents were asked to go back to see him. If these walls could talk, the stories they could share of love and loss. I also met a girl today at Mass who has been here for 5 months with her 6 month old son, Carter. Carter is suffering from a rare air-flow problem and she was waiting to hear the results. It was interesting, Carter's dad is Catholic and his mom explained to me that her faith was at one time important and she just felt such peace being in the chapel. She wanted that peace back. It was a beautiful moment as we sat together and prayed for Carter, for her and for their family. (Yes, in typical Maria fashion I asked if we could pray together. Her face was in fact PRICELESS! but I think she was touched to pray with someone). I share these things because I am realizing the need to share the love and prayers we receive with all these people. I told Vivi when I got back up with her after Mass that we had to start praying for all these other people, and she was like, uh, duh Mom. :) And I promised her I would offer up the sadness in my heart of not being able to hold her for these babies and their families. Feeling the deep pain for these families is allowing my heart to be closer to our Sorrowful Mother at the foot of the cross. I know Mary and Jesus are both swaddling Vivi, and it brings so much comfort to think she is holding all these other families and their babies in her arms as well.
Continue to pray...for all of us :) God is here...God is here...God is here.