Bella sneaking a peek at Mickey Mouse Clubhouse with her buddies...
We're watching "Over the Hedge" Tonight. Every time I walk to the hospital, I see about a half dozen squirrels, and I always think of Hammy the squirrel!
Good day for Bella, good day for us.
Pressures good, no fluid given, pressers held. Sedation weaned again. Vent weaned again.
Bella continues to baffle every doc on her case.
There is some not-so-hot news in that Bella's cultures came back positive for two different bacteriae. Good news, we started vancomycin yesterday which will treat both bugs fine.
Ali was too distracted by Mickey Mouse Clubhouse...
We sat Bella up while Ali was visiting today so she could see her baby sister sit up for the first time since the beginning of July. Man, that feels s-o l-o-n-g ago. Outside of reading to her, we let her rest today. Your prayers were right-on calling for rest. Before I left the hospital, I urged the attending ICU doc to not allow the residents to wean her pressers. She was in a good spot, so just let her be. He thought that was fair enough, and agreed to keep them away from her! ;)
We took a drive out to Stillwater again today and played in Pioneer Park overlooking the beautiful St. Croix river and downtown. We took the scenic route up past White Bear Lake and winded along single lane roads through the hills, ponds, lakes, orange and yellow trees, and fields. It felt so good; we felt so far away from that little room... free to recharge.
Tomorrow will be another quiet, rest-filled day for Bella. Thank you for all of you sharing Bella's story with your friends and family. We received a lot of contact from new readers today, and for that extra support, we are so very grateful. Also, thank you to those of you who have shared stories of triumph over a tremendous medical adversity. If you have a story like that, where you or someone you know beat the odds, please share them with Bella. I want her to hear about all the other amazing boys, girls, men, and women who beat the odds just like she is, so she knows she isn't alone facing such a long, uphill climb.
Where Bella is at right now in her fight, I can tell you that the docs are out of ideas. Bella is holding her own against all odds, and only because of the energy we (you all and us here) and her heavenly father feed her. I get the unfortunate sense that, with the exception of Drs. Tolar and Wagner, the rest have just given up. I hope that we can 'win over' her newest BMT doc, like we did with Dr. D... We all need to just keep watch over Bella, continuing to wrap her in healing prayer and positive intention. It worked. It works. It's working.
As I walked to the hospital this morning, I felt SO COMFORTED by all your support, and by the remembrence that God really is holding all of us in the palm of his hand. Even in the midst of my pain and suffering, he is still there, holding me. He can bear all my pain, it's okay. After all, if God is the creator of all things, he created pain, too. Why? Well, my guess is that pain is kind of like a volume knob. If we can get out of our own will and way, we can hear his whispers guiding us. When we get in the way of our selves, God has to turn up the volume a little. Sometimes, though it is not necessary, we need to experience pain to really listen in on the lesson. It gets our attention, let's face it. We don't like it, we think it's cruel, we want to avoid it, but what if we can see pain as a chance for a deeper understanding, an opportunity for breakthrough in what we think is possible? If you've ever lifted weights, you know the feeling of pushing through that tenth repetition, despite the pain, to reach a new personal best that was once impossible (I'm not even sure why I am writing about this, it is just coming, so I'm letting it flow).
So, I really feel held in the midst of this journey. Something magical is happening here despite the pain. By not giving up, Bella has overcome respiratory failure, renal failure, veno-occlusive disease, a dynamic left ventricular outflow obstruction, left ventricular hypertrophy, mitral regurgitation, capillary leak syndrome, a blood clot in her kidney, oh, and EB. By not giving up, we have witnessed and testified it. We have fed Bella all the love and energy we possibly could. We don't know how we do it, either. If you told us we'd still be standing tall on the eve of day +100, having spent the past 98 days in the ICU, we would have NEVER believed you. We now know ourselves as so much stronger than we ever gave ourselves credit for. We would never have known how strong we were if we weren't pushed so far past what we thought was possible... what we could handle.
God sees us all as the true potential we are. He does know what we can handle. It is we, in our arrogance, who think we know more than God. It is we who think we know what is and what isn't possible... what we can and cannot do. Thank God he doesn't listen to us.
How many times do you think you fell on the way to learning to walk?
Would you honestly try that hard now as an all-knowing adult? Or would you have given up, saying after the 30th time you fell on your butt, "Maybe this walking thing just isn't for me. I just wasn't meant to walk obviously." Or worse. You say, "It must be God's will that I can't."
How would we presume to know God's will for us? This is one of the great lessons I'm coming to learn through this journey. It's been a humbling kick in the teeth, but one I needed. I pray that you don't have to get kicked so hard to learn whatever lessons you are here to learn.
So, what have you been saying to yourself, "That's just not possible for me." Really?
One day, Bella WILL say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away." I dared to say that within days of her birth, not knowing whether it was possible or not. I left that part up to God, for all things ARE possible through him.
What are you willing to leave up to God, in order to make the impossible possible?
Fall at the RMH...
Flood waters at the shores of the St. Croix...