While my back left me a bit worse for the wear, I made the drive down here in pretty good shape and got back to the familiar surroundings of the CTICU. Great to see my wife and Rudy after the long hiatus.
I’ll skip right to the high point as nurses Aliza and Amy were very excited to give me my chance to hold Rudy. That didn’t come until after Trish left and some of his numbers got ironed out after a transfusion and a fever that needed to break. Really, really cool! Not to bemoan my lot, but in the delivery room there was only time for Rudy to rest on Trish’s chest for a few minutes before the neonatal team took him–so even with all maneuvering around tubes and wires, it was some of the best 45 minutes I can remember to hold him and let him look up at me past his chubby cheeks. Just like with Trish, he got nice and calm and I got to run my fingers all the way through his hair and feel his soft back pressing up against my hand with each breath. I’ve got pictures, but no cable–so we’ll have to post them next time Trish has the camera. She got to go first, but if all goes well I may get additional chances before the weekend is up as this could be a daily thing.
I had been prepared for Rudy’s puffy appearance from the TPN and steroids and just about every other person who comes in here assures us this will go away. He does look he’s doing that “even my dog is chubby” routine from elementary school. The docs are pleased that, since the chest tube came out on Wednesday, they did not have to replace it Thursday AM as they anticipated. So far the pleural effusions aren’t there–but Rudy’s been known to hold off a few days before on this kind of thing. The chest Xray this morning didn’t show much fluid either so, in addition to keeping the medications going, they are limiting his fluids as much as they can–the less fluid going in his body to start with, the less can accumulate on his chest. So we’re praying guardedly and fully content to let Rudy make his own slow progress, but it would be great to see this chylothorax go away without there needing to be any other chest tubes placed for drainage. Only then can we look at feeding and breathing on his own.
In the brief time Trish and I were together today (she looked hot, by the way), we did have a meeting with Dr. David Feinberg, CEO of the Medical Center. He had introduced himself to Trish a couple of weeks ago as he regularly makes walks through the hospital to meet patients and families and wanted to hear more abour experience and any feedback we had. So we had a nice 45 minute chat where we were able to both share our high regard for the team of people caring for Rudy and also speak to some of the things he wanted to hear about improvements they might be able to make in assisting families like ours. Always places to improve, but impressive institutions have impressive leadership–many thanks, Dr. Feinberg!
As upbeat as today was, I can’t end this post without sharing one of those simultaneous contrasts that make for such a loaded experience here in the CTICU. Right around the time I was getting the chance to hold Rudy, I noticed “the vibe” descend on the unit. It’s something that you might not pick up on if you haven’t spent weeks here, but all eyes started to focus the room next door–the one with the new little girl who we also suspect was an HLHS patient. Staff began to enter and exit frequently. Nurses covered for each other in adjoining rooms so the one there could have extra assistance. I could picture the focused intensity of the doctors in the room but all I saw were the others who stood outside with expressions very different from the lightness that befits a late Friday afternoon. Equipment and carts were rolled in–the brisk cadences sometimes evolving into running steps. And then later in the hour it became quiet…the staff carefully wheeled back equipment and doctors walked away slowly saying little. Professionals all, but some sure looked like they were going back about business with moist eyes. The parents I never got to introduce myself to walked away with tears streaming from theirs with only a small collection of belongings in a pink hospital tub. The drapes in the room were drawn when I left for dinner and, when I got back it was all too clean and empty. There’s rightfully much attention paid to patient confidentiality here but even without that, I dare not ask. Is there any possible reason they could have transferred her down to the NICU? This soon after a Norwood? Prep for a transfer doesn’t look like that. Our burden may be one of indefinite waiting, but I’ll readily assume it this weekend in light of what I fear others are having to endure.
This is indeed a savage monster. Today’s simple joy is all the more precious when I realize how fortunate we are even for this. Thanks for walking with Rudy in his fight.
Rudy's Beat 
I’m so glad you got to hold him, what a gift that was!
We can feel your love and warmth going into your special little son.
Praying for more of those moments and that his strength may
increase to be held ALL the time. Love Oma and Opa
Yay…..You got your turn!!! Undoubtedly this will be healing all around!!!!
So sad about your neighbors’ little girl!!! I remember that mom’s brave smile as I walked by the room the other day….I will pray for the women behind that face.
My heart rejoices with yours today Rolf and is heavy for the family in the room next door. You have much to be thankful for. I wanted to give you a little reminder we do not just walk with your family through this we march as a might army of God storming heavens gates for His best for your family. My prayers have been that God would teach each one of us some very valuable lessons about him and his kingdom through this exercise of waiting.
With much love for your family.
Rolf, thanks for the reminder that Rudy is in a battle….the fact that not all those who are in the fight make it through to the desired outcome makes it all too real. We are thankful for Rudy’s life and that he has been in the battle for 9+ weeks. I’m praying that God will be glorified through this fight, through Rudy and all his battle buddies – especially those who are right there in the foxhole with him!
Have a great weekend with Rudy and I’m hoping you’ll have plenty of repeat holding therapy sessions!!
Well, here is a story for you! I lost my Rudy bracelet this morning. It is a bit big and is beginning to come off way too easily. I went shopping and came out of the store and THERE in the parking lot was a blue bracelet. I picked it up and it was a Rudy bracelet. I guess it was my bracelet that had somehow gotten caught up in my clothes and fallen out as I walked into the store. The thing that amazed me was that I just could NOT lose my Rudy bracelet. I had been in the store about an hour and am surprised that the bracelet stayed in the parking lot–just waiting for me to come out and pick it up. I wear it all the time to remind me to pray for Rudy and all of you each time I glance down and see it. I am SO GLAD that I still have my Rudy bracelet!
Rolf and Trish, I’m so glad that you’ve both been able to hold Rudy in the past few days. I can only imagine what a rich blessing that is for both of you, but also realize how important touch and holding is for the growth and progress of little babies. I check in with the blog every day and pray for you all often. I’m amazed at your strength and courage, as well as your honesty and humility. Praying for Rudy and praying that you have many many more opportunities to hold your little guy.
I’m weeping, praying and pleading for God to touch Rudy with His strength, mercy and healing……for you too Rolf. We all feel like we are walking beside you through this and I know I am privileged to pray. Thank you for keeping your precious Rudy out in front of us and at the feet of Jesus.