I couldn’t help but daydream a bit since yesterday as I confess I felt some kind of connection between me and Barbie. There’s no reason for alarm as I’m perfectly happy with my wife, but since yesterday I’ve been wondering what would have happened if I met Barbie first. Would life have been one uninterrupted beach day? Would we break it up with happy journeys in the vinyl-coated camper? How many heads would turn as we cruised by in the pink convertible with Skipper along in back? No wonder Ken is always smiling…
The prospects for this weekend had me a bit weary from the outset. While I’m certain the team did everything they could to get the lymphangiogram done last week, there were factors clearly beyond their control. Nonetheless, the prospect of simply having to wait our way through a weekend with little anticipated progress was depressing. As Trish wrote yesterday, the highlights yesterday were offset by the backdrop of how long this journey has been with no idea of an end in sight. Throw in the nagging pinched nerve in my back making it hard to move or find comfortable positions and it has been a challenge to stay positive as we just sit and wait with Rudy. The sheer expanse of time this hospitalization is draining in and of itself. We had an emotional reminder of this yesterday when Trish’s patient armband finally fell off. It’s the one they give moms when they’re admitted and they match it with one on the baby so they know who goes with whom. Mine fell off about six weeks ago, but Trish was more careful in an attempt to keep hers on until Rudy was discharged. It finally gave way yesterday, again signifying the uniqueness of our situation in that it pushes even simple hospital items far beyond their intended lifespan.
Providentially, we had planned on going to our god daughter’s, Jayden Zambrano, dedication at Christian Assembly here in LA. As brief as it was, it was good to see so many good friends from our former church family and ever so good to sit in a familiar place and worship. Thanks everyone. Jayden was resplendent in red velvet and it’s fun to see Joe and Jen, after pouring so much of their lives into other people’s kids, pour into their own. As we prayed over the five babies being dedicated at the service, I prayed for what these parents were setting out on–a journey of joy and love, but one that also holds the potential of stretching them far beyond what they ever imagined. While I would have heard those words and probably spoken them with eloquence previous to Rudy being born, I don’t think I had any idea what it would mean to actually live them. Being parents has asked (no, demanded) more of us than we ever thought we would be able to give, but I suspect that’s also where we’ve come to know how great God’s love and grace is to sustain us through such challenges. I suppose there are some times I actually know God’s grace is sufficient, but more honestly, more often I just have to trust that it is.
We peeled ourselves away from several people we would have wanted to spend the afternoon with to come back here for a couple hours with Rudy before we head up to Santa Barbara where the troops are eagerly awaiting. Trish and I are both very pleased with Rudy’s appearance–his puffy face has receded significantly so we can see his eyes, which were open for a good long visit. As he’s been sleepy most of the weekend, it was fun to have thirty minutes where, after he woke up to Trish’s singing, he was alert and looked calmly back and forth at us. The numbers are holding stable and the prayers being offered for his nutrition are being answered. He’s up to 6ml/hr of formula to his stomach (which means he’s tolerated food for six days straight–compared to about 2days being the longest stretch previously). The team will continue to raise the rate 1ml per day and started dialing back the TPN (intravenous) feeds a corresponding amount–this along with a phasing off of steriods is what’s making his face less puffy and we love that. Looking at him even now, his eyes look like they’re laid closed instead of being pushed closed.
So thanks for your prayers and please continue. Pray that the lymphangiogram would come together Monday and that it would give the team good diagnostic information to address the fluid in Rudy’s chest this week. Progress is coming in small steps, but we’re grateful for it.