Trish just called and said they came and got Rudy at about 12:30. There’s a good bit of prep before they start the actual cath, so I’m planning on at least a couple of hours before we hear anything and shouldn’t be concerned if it’s longer (he had a five-hour session in the cath lab once). Trish wasn’t able to call with any updates before now as they were waiting on the 2nd floor where the big radiology equipment blocks any cell phone signals. Rudy was waiting like a trooper. Trish is really comforted by the team that’s on hand. Dr. Leigh (cardiology fellow) will be with Drs. Levi and Harake, as will Dr. Brill (top notch anethesiogist and intensivist). We are so grateful for these exceptional people we know and trust.
Ready and waiting…
It’s 8:30am and we’ve been busy this morning. We got up at 3:30 and got Trish and Rudy rolling to UCLA at 4:20. Trish called at 6:45 to tell me they were there and all checked in. There was some question as to whether the first case was on, so Rudy might be going early. Trish didn’t have much time to talk but reported that, due to the different routine this morning, we forgot to flush his G-tube after the overnight feeds–duh. We’ve learned that formula left sitting in the tube can clog to something close to concrete, so it had two hoursto cure in the car. She was going to try to get it unclogged with a wire we have for that purpose, but at least she’s at a place where they have a spare they could just pop in.
So, I’m waiting at my office along with the rest of you. More when we have it.
Countdown to the Cath
The last week of school upon us and life has been fun and full. The kids are looking forward to school ending this week and the days leading up to that seem full of field trips, parties and other celebrations. Tonight, we will join the ranks of proud parents as we attend Wilson’s 6th Grade Promotion—Jr. High is just around the corner.
In the midst of all of this, Rudy has been laying low. So low in fact, that we neglected to note his 8-month birthday here on Rudy’s Beat yesterday. Another milestone to note! He’s quietly getting fat and (we think) happy. This morning at the pediatrician he weighed in at 13lbs, 12oz, so his solid feeds are doing what they’re supposed to. This still has him well below the 5th percentile on the generic growth charts, but referring to anything to do with Rudy as “generic” seems out of place. He’s right where he needs to be on the Rudy Chart.
But enough for laying low—it’s time for a return visit to UCLA. Wednesday morning, Trish and Rudy will leave at 4:30am to head to UCLA for a 6:30am admittance. Rudy is scheduled to be the second procedure, but they like to have patients on hand and ready in case scheduling changes. This will be Rudy’s pre-Glenn catheterization, where Dr. Dan and Dr. Harake will enter from an artery in his groin to get a good look at the heart (an angiogram). They’ll measure pressures and flow in different areas and can even take some interventional steps in the event certain things are amiss. The team will use the information gleaned to develop a game plan for the Glenn, so we’ll await word as to how the next weeks are going to unfold.
Caths are commonly outpatient procedures, but in Rudy’s case we are being prepared for him to stay over one night for observation. As you feel led to pray for Rudy, please pray specifically for this—the procedure itself doesn’t cause us as much anxiety as simply having Rudy in the hospital for any length of time. From his history, we can’t help but worry if he’ll pull some kind of a trick or have some numbers amiss that will lead to another extended stay. Apart from this, we’re praying that a clear plan would emerge as we’re approaching June somewhat tentatively; unsure of when the surgery will take place and therefore unable to plan out very far. So, we’re looking forward to some clarity, but in the meantime we are so grateful for how special it’s been to have almost four full weeks at home with Rudy.
We’ll post updates as things unfold on Wednesday. I’ll be here in Santa Barbara. Fortunately, I’ll only have to battle preoccupation in my office for part of the day as I’ll be joining Livy’s class for a field trip at the zoo. It’s a welcome distraction and, given the how much of our absence the kids have had to accept this school year, I’m looking forward to time with Livy and her friends. I already have a good zoo joke ready to go: Why is a giraffe’s neck so long? Because it’s head is so far away from its body! Those first graders don’t even realize the comedic gold that awaits them.
Thanks for praying. Go, Rudy, Go!
What A Difference A Few Months Can Make!
When you see Rudy from day to day, it’s sometimes hard to see the gradual changes and growth he is experiencing but Rolf and I were struck this morning by how far Rudy has come since his post-op days back in October!!!! Rudy has settled into a nice routine and been so content and cooperative since our return from hospitalization #2. The Glenn may be coming up quicker than we had hoped originally but we are encouraged by his ALMOST 2 pound weight gain and the “twinkle” (not quite a smile yet) that emerged this week to brighten up his whole face. Speaking of weight gain, Rudy may start packing on the pounds now that we have cleared the rice cereal hurdle. After several failed attempts at cereal feedings, Rolf (a.k.a. The Baby Whisperer) fed him an entire serving of cereal this morning and Rudy finished it in record time without gagging!!! Something “clicked” for him and when we sat down at noon with serving number 2, he started to smack his lips like a little baby bird eager for what was coming. Any progress we can make now and get firmly established is a blessing as I’m sure we’ll lose a bit of ground in the weeks following the Glenn. He may have to relearn some things but at least we can rest assured that he can do them!!!
Speaking of hurdles, Rudy had a first today that would make Gpa Dick happy…Rudy attended his first track meet! Special friends from L.A. were in town for a Regional Club Track Meet and we were thrilled to cheer our Emmie friend on as she ran the 4 x 100m relay. We missed seeing big brothers Jake and Levi but were blessed to catch up with Robin, Tommy, Emmie and Eileen and the goings on back in L.A. -refreshing fun!
June will be full of grandparent fun as Oma and Opa fly in today for a two week stay and Gma and Gpa will come for the last two weeks of June – overlapping so all grandparents will be here for Rudy’s dedication – so special!!! We have a big week ahead…Wilson’s promotion to Jr. High on Tuesday, Rudy’s angiogram (cath) at UCLA Wednesday and Thursday, last day of school on Friday. We’re anxious to get the information from the angiogram and a game plan for the Glenn but also sensitive to not let it overshadow the other big events of the week. Please pray specifically for Rudy’s health as the procedure will be postponed if he gets sick. As it turns out, our little half-heart is the healthiest in our household right now…the others are battling congestion, coughs and a low-grade fever – normally not very notable but this is a bad weekend to have a little bug hanging around.
Don’t forget to “save the date” on June 12th!!!!!
Blessed by your continued prayer support, 🙂
Evite to Rudy’s Celebration
We’re settling back in after our Memorial Day Weekend excursion. The big kids are now in their last two weeks of school and readily reminding us of it. Rudy had a visit with our local cardiologist this week who feels it would be wise to schedule the Glenn sooner rather than later. As Rudy’s scheduled for a heart cath on June 3rd, he even went as far to inquire whether we just wanted to get admitted right then for the surgery. Kind of sobering how close we are to the next round already. Our preference would be to bring the school year to an end for the big kids without another Rudy episode–let alone we’d really like to have our dedication celebration before the next round. This will hopefully be the game plan. As it stands now, there’s not an urgency to the degree that a week or two would make a drastic difference but if the cath tells us something else then we’ll respond accordingly.
So for now, we’re going ahead with plans to celebrate Rudy on June 12th, 6:30pm and hope that everyone in and around SB (or beyond) will come and join us. We envisioned having a bit more room to schedule this as a homecoming and end to the first chapter of the journey, but with the second close at hand, it seems even more timely to gather friends and family together to send Rudy off. We’ve created an Evite page with information and to give us some idea of who’s coming. If you’re reading this, you’re invited to come and to spread the word.
A Memorable Weekend of “Firsts”
We’ve been off-line for a few days and are eager to get back on to tell you about a few “firsts” for Rudy. After careful consideration and preparation, Rolf and I decided to attempt a little family roadtrip to Pine Valley, CA (just outside San Diego). Our dear friends, Grace and Marlin (Rudy’s godparents), were marrying off their son Josh (of whom I have very vivid memories toddling around in diapers, I might add). We wanted to be there so bad as it would mean so much to us and the kids to join in celebrating Josh and Emily in person. We went back and forth on the decision but by Thursday morning Rudy was looking good and we figured if he didn’t tolerate the drive or he wasn’t looking comfortable, we’d just turn around and come home. San Diego has a good Children’s Hospital nearby so we knew we could get help if we needed it. As it turned out, Rudy did GREAT!!! Our six-hour trip landed us in Pine Valley around 1am Friday morning. Thanks to the generosity of some friends of Grace and Marlin, we borrowed a mobile home that was conveniently parked right next to their house so we settled in, went to bed and enjoyed falling asleep to the sounds of rural California. So, Thursday marked Rudy’s first “roadtrip” that didn’t involve UCLA as it’s destination. Friday marked Rudy’s first wedding. We were able to help with last minute preparations a little bit on Friday morning before the 2pm ceremony. It was fun to watch Grace and Marlin navigate seemingly effortlessly the many details of the day, to visit with their family from Canada who I haven’t seen in almost 20 years (!) and to introduce Rudy to many friends in our San Diego circle who have been praying for him so faithfully. As you can see from the picture below, Josh and Emily were glowing…a confident young couple we are proud to know and were thrilled to celebrate. Rolf and I found the escape from the daily routine and telephones very refreshing and it was good for the soul to be together as a family.
We enjoyed the VanNortwick’s hospitality one more day and packed up early Sunday morning to make our way home. Rolf was kind enough to record the Indianapolis 500 for me so we looked forward to tamales in front of the t.v. watching the race as soon as we got home. I found out last week that my friend and neighbor Jannele likes the Indy 500 maybe as much as I do so I avoided making any contact with her as we drove in so I wouldn’t find out any race results! We have a date to watch the race together next year. 🙂 So, Rudy’s big first yesterday was hearing Jim Nabors sing “Back Home Again In Indiana” and watching the start of “the greatest spectacle in racing”- nothing could be better. Rudy dozed off pretty quick as did Rolf and I at about lap #160 but Max dutifully woke us up with only 3 laps to go to see Helio cross the finish line for his third Indy win!!!! Rudy missed the big finish but I think he liked all the excitement nestled snuggly in his little port-a-crib set up in our living room. Good times…good times.
Save the Date!!! June 12th
We’ve been wanting to have a dedication/celebration/homecoming for Rudy ever since his first discharge from UCLA. We even had a date scheduled in May until his unplanned re-admittance. As unpredictable as life is on the Rudycoaster, we’re going to give it a try.
Perhaps a more formal or fancy invite will come together via the web or other media, but for now please save the date:
JUNE 12th, 6:30pm
Santa Barbara Community Church
1002 Cieneguitas Rd., Santa Barbara, CA 93110
On-site reception to follow.
As so many people have embraced our family and have been praying for Rudy, we’d love to gather together, celebrate him and pray for the twists and turns yet to come. I hope any and all who feel so led will join us. As best we could, we checked this date with Rudy and he seemed amenable, so here’s hoping he doesn’t get fickle and make his own plans. We’re expecting to do the cath during the first week of June so we’re hoping to have this celebration before we embark on the Glenn.
Looking forward to celebrating God’s faithfulness to our family!
Look Dad–No Trach!!!
Rudy gave me quite a start this morning as I was going through the morning routine of meds, suction and breathing treatments. On coming back to his crib at one point, I noticed his trach was at a very peculiar angle off to the side. It took a bit to figure it out, but his little wimpers made it clear that he was no longer breathing through the trach. Perhaps in his displeasure over the morning routine, he managed to undo the velcro on his trach ties and pulled the thing just about all the way out. All things considered, we stayed pretty calm–but Trish sure got up quickly and popped the thing back in there while I held him still. People often note that we’re not easily rattled by some of the things our kids attempt (climbing to the very tops of trees, skateboard ramps or jumping off the roof into the pool) but I’d prefer Rudy not attempt a stunt like that again until the doctors say it’s time for that trach to come out.
Followers of Rudy’s Beat often ask us how the Mannings are doing. They have been on our hearts this week as Tuesday would have been Katie’s first birthday. I recommend you click over to their blog and read Alan’s post this week. Though we certainly regret the circumstances in our families that brought us together, we sure are glad for such friends.
Still basking in birthday bliss
Just thought I should post something to follow up my birthday. Had a fun day turning older and appreciate all of the pleasant greetings via the internet and other channels. This experience with Rudy has taught us to savor the simple things and I think that’s what I liked the most about my day, starting with the happy hugs from the kids as we stumbled around the house waking up. We made sure we had extra time so we could walk to school–a more common ritual from back in the days before Rudy came.
The office was fun–Trish snuck down with some cupcakes and the team along with most of the guys in the recovery program paraded into my office about 30 strong to sing “Happy Birthday”. Then Trish treated me to lunch out at one of our favorites (Shoreline), where you can sit just off the sand, look at the ocean and think of all kinds of reasons not to go back to work. Best perk was learning that Trish didn’t treat me after all–the waitress informed us that our bill “had been taken care of”. (dining in the same place as Terry Foil would appear to have favorable outcomes! Thanks, Terry!) It’s been a beautiful week and I usually find the kids out in the pool when I get home, so I enjoyed watching them have a good time before we had dinner and I got to open my presents. After 7 months of tag-team parenting, the simple fun of being altogether hasn’t faded yet.
My birthday fun continued today as, in addition to the other gifts, I had my eye out for a stand up paddle board (much better on the back than my kayak). Found a sweet deal on craigslist this morning and snatched it up on my way home. I couldn’t resist putting it in the pool with the kids and had fun even with the limited turning radius of a 12 ft board in an 18ft-wide pool. Got me hankering for the open ocean just 3 blocks from my office. My next challenge will be to keep the people at work from noticing how many “off-site appointments” I have on windless sunny days.
Deep down, I think Rudy enjoyed my birthday too. Since coming home from the hospital, he’s been very peaceful and seems to be progressively much more observant. It turns out he has facial expressions that don’t always include a furrowed brow. Quite often he has his eyes wide open and is looking around at all the new things there are to see. This morning, I put him in his bouncy chair down by the window so he could look up at the bird feeder and the roses in the back yard–a much more interesting view than the ceiling of his ICU room. He seemed really engaged with it.
Today’s accomplishment was getting a bunch of prescriptions filled. Funny how complex things like heart caths and OR procedures get done with very little effort on our part, but then what would seem to be a relatively straightforward prescription refill can take four trips to the pharmacy and multiple calls to insurance carriers. The upside is we now seem to have located a pharmacy with great service and awareness of Rudy’s needs. The down side is that I don’t always have a longshoreman nearby to translate some of the angry words my wife uses as they fall upon my chaste ears.
We realize that having Rudy home means we aren’t able to post as regularly. As some have commented that no news often makes them fear that something is amiss, I think it’s safer to assume the opposite. If an emergency arises, we tend to post quickly so that readers can be informed and pray. Otherwise, know that we’re just living out the fullness of life with Rudy at home. Having any newborn at home takes some attention and in Rudy’s case it’s safe to say there’s a bit more detail to attend to. Hopefully, we’ll give you more of a sense of that in future posts, but suffice it to say it’s so much better than having him in the hospital. One thing I do miss is the space for a bit more reflection that came in the hospital, so we were able to give more depth to so many of the feelings and thoughts. Probably made for better reading. Certainly made for better therapy. But thanks for your continued interest and prayers. If we look at the journey with Rudy thusfar, the one thing we can be certain of is that further twists and turns await, but right now it’s 11pm and I’m sitting in absolute quiet with him dozing in the crib next to me. There’s no beeping machines, we’re in our cozy house. This is what babies are supposed to do. Pretty cool.
Mein Lieber Rolf…
…is another year older!!!
- Rolf and his sister Andi in the “old country”! Nice Lederhosen!!!
Actually, from what I understand, this was typical school attire for Rolf growing up in New Jersey!! As you can imagine, he was quite popular…never made fun of! All I can say is “What a STUD!!!”.
The big kid at heart is forty-something, something today and we, in our household, sure are celebrating him…so thankful God made him 40+ years ago and now he’s ours. A Big Happy Birthday to the man I love and the Daddy that is cherished by 4 little lieblings.
Rudy's Beat 