Surgery Day!

2 of my 3 beauties that I am lucky enough to be a family with!



Hangin' around waiting for the call from the OR

So, the day started peacefully with no real hick-ups except that we couldn't connect with our CHOC NICU nurse in time to get her in to the surgery. No worries, I took lots of pictures of the EB CART they have dedicated for EB patients. Anyhow, we asked that I be allowed to sing Bella to sleep while the anesthesiologist puts her under as well as take pictures of their OR supplies for CHOC. The anesthesiologist (by the way, anyone know a shorter nickname or abbreviation for a-n-e-s-t-h-e-s-i-o-l-o-g-i-s-t? It's such a long word to type repeatedly...maybe I'll just refer to him as Dr. Waldman, after all, the man does have a name...) didn't seem too excited to grant my requests, but he went along with it.

We brought Bella in, and I sang her "Bella's Song" and she was out by the time I got to the first chorus. Then I took pics of the cart and its contents and left. As I was leaving, I reiterated how great it would be if we could do Bella's dressings while she was still out, either in a PACU isolation room (PACU = Post Anesthesia Care Unit...I think) or the PACU itself. Dr. Waldman wanted to wake her up before she left the OR (which I thought was a little weird, but he's the expert) so he again didn't really dig my idea. He asked, "How long does it take?" to which I answered, "If she's OUT, 20 minutes. If she's awake, 90." Then I walked out the door.

We hung out in the waiting room for maybe an hour when we got the call. "They're gonna let you do the dressing changes in the OR!" the volunteer said to us. We went into a prep room and gowned up, and then were led into the OR. WE immediately got to work. The Surgeon, Dr. Kling, Dr. Waldman, and the Surgical Tech ( I'm sorry, I don't remember his name ) were present still, as was a med student from UCSD. Ang started immediately on the left arm and leg while I started prepping bandages. We ignored everyone and dropped into our own surgical mode that we work in. Within seconds the surgical team started talking among themselves about how fast and organized and professional we were. One of them made the comment that we could work there. Ang was doing the ABC wrap on Bella's left leg and the two Docs were audibly impressed with her technique. I think they were a little incredulous that parents of a 4 month old could be so facile so quickly, but that is the way with EB, we need to figure stuff out as fast as possible to ensure the best possible outcome for Bella. That is why we're doing the G-Tube at only 4 months. Nutrition really is the key to staying one step ahead of this - let me remind you - fatal disease.

Anyhow, as the cheerleading and compliments continued, I asked Dr. Kling if she wouldn't mind taking pictures for us. She was into it! She started snapping away. Of course, this was after I got to politely ask her to step aside so I could wrap Bella's right hand. That was really funny. I told her, "I can't believe I'm getting to say this, but, pardon me..." then I moved into her spot and she got out of the way! I was definitely in my element in there though. I've always joked that our wound care procedure resembles surgery in its precision and clinical calm demeanor that we approach it with.

Anyway, we finished up...total time? 20 minutes. NAILED IT!!!!



Dr. Mommy and Dr. Daddy working on Bella simultaneously in the OR

We went back to the waiting room for a short while and then got a message stating would one parent come to the PACU. Ang nominated me, so I went back. Bella had a painful awakening from surgery so they re-medicated her and asked me to help sooth her as she came out of her snooze. I started singing her song again, and a short time later, Bella's nurse came over and said, "The entire team in the OR said that that song you sang to her was a real tear jerker!" Meanwhile, I had explained to Dr. Waldman that, as a music therapist, I use music with Bella to cue a relaxed response from her. He just looked at me flatly while I was explaining that, but once he heard and saw it, it was another story altogether. Music therapy is like love. You can tell someone about it all you want, but its meaningless compared to when you personally witness or experience it for yourself.



Bella striking a pose while recovering back in her room


A chaplain came to visit us shortly after we returned to our room and we talked for a while about the while about our whole journey and how faith had transformed it into an inspirational walk full of abundance and love. The chaplain commented how she couldn't believe how unbelievably calm we were in the moment giving what was going on. We explained that this is a marathon, not a sprint, and that we pace ourselves emotionally so as not to burn out. We also feel genuinely cared for by our friends, our family, the staff here at Radys, but most importantly by our faith. We are also reminded of our family-in-arms The Sheridans who are going through the BMT clinical trial at U of M and how Sam and her mom Marybeth have been in the hospital for almost 2 months straight enduring the most intense life threatening leg of Sam's 14 years with this disease. I can't even wrap my head around their current stay, much less all they have gone through to date, and their faith is every bit as strong and steadfast as ours. We look up to them so much for courage, and perseverance. THANK YOU Marybeth and Sam!

While the Chaplain was in the room, a short while after describing what I do for a living, Bella had a pain episode when we tried to switch who was holding her so I could eat. She "seemed" peaceful and out cold, but when I handed her off, she arched her back, grimmaced, turned red, and let out repeated, tired, pain-filled cries for quite a while. We immediately turned our attention toward her and as Ang got her comfy in her arms, I stroked her forehead, held her hand while Bella held Ang's and I once again sang her her song. This time I had to sing all 3 minutes of the song plus hum it over again before she settled down. It usually works much faster than that, but hey, 6 minutes to calm a 4 month old that just had open abdominal surgery? We'll take it! Anyway, once I stopped, the chaplain quietly whispered, "So that is what you do, isn't it? I just felt the calm and peace in the room, and can see how patients would be so uplifted by that. Wow. Thank you for letting me remain in the room." Really, I was grateful to have her calming, peaceful presence in the room. It gave us the space to completely turn from her and "care for Anabella."

Being loving parents is perhaps one of the greatest ministries available to us all. I am so grateful we are Bella's parents.



This group hug was Ali's idea before we split up on Monday to travel to SD

Thank you for all your prayers and intentions/vibes/ and thoughts. They made this day truly peace-full! Now, please pray that Bella heals w/out infection here in the hospital, but also pray for the following people. We would appreciate it so much:

May Barbara's surgery on the 16th have the positive outcome she is praying for.

May Greg's rehabilitation be swift and complete

May Sam's body heal fast and may her pain be minimized

May Chelsea's dad heal from whatever it is that got him

May my mom recover quickly and fully from a nasty flu that kept her from coming down here with us.

Thank you so much. Bless the positive power available through this amazing thing called the internet.