Ah-Ha! EUREKA!! After a search for sterile saline that lasted a few weeks and led, ultimately, to the discovery that it could only be acquired via a prescription and cost $47.00 a liter, our case of saline arrived today via UPS!!! Twelve liters for the price of two…I LOVE the internet!!!
Rolf posted a very thorough update of our week earlier so I’ll keep my words at a minimum and share a few photos of our recent fun…
Special time with Oma & Opa and G'ma & G'pa
Kisses from Opa
Lovin' from Oma
Tickles from G'ma Jo
Hugs from Grandpa
Listening to Max's Ipod
Finally...a smile!!!
Goofball!
It was sad to say “goodbye” to Oma, Opa and Gpa this week but we have one more week of grandparent fun with Gma and then it will be “back to normal”. We’re looking forward to another great week of progress for Rudy…and summer fun for the older kids. Thanks for sharing in our joys as well as our sorrows. ‘Wishing you a wonderful weekend!
As I posted briefly on Friday night, this weekend I’ve been very aware of the richness we find in the unexpected. We didn’t expect Rudy to join our family. We certainly didn’t expect him to have to battle like he has. I’ll go as far to say I hate that he has to battle like he does. I’m quite certain I’ll never get to a place where I can wholeheartedly say I’m grateful for his condition.
But yet I’m so grateful right now.
Grateful that within that which has scared us like nothing else in our lives, we have found comfort. We have found empathy and companionship that truly lifts the soul. We have seen character, compassion and fortitude blossom in our kids. We’ve learned about our own endurance and ability to function in the midst of extended challenge. We’ve met people who amaze us in their expertise and devotion. We’ve been blessed and been made aware of God’s goodness in brand new ways.
I am so grateful for Friday night’s dedication celebration. Life can become a blur in the land of critically ill children. Stints in the hospital can go on indefinitely. One can emerge from one set of challenges only to face another. The goal of survival can trump a balanced engagement of life. Instead of feeling involved in things, you struggle with how much you’ve missed.
Having a clear milestone amidst the disorientation is precious to us. We were able to look back and rejoice over what Rudy’s overcome. We were able to set our sights forward and pray for his future—a thoughtful, hopeful prayer rather than a rushed and panicked one in a hospital hallway. We were able to be together with so many precious people who have helped us in shouldering this burden. So thank you to all for being a part.
In the calm weekend that has followed Friday night, I’ve enjoyed asking the kids what their favorite part was. Olivia gave us permission to share her journal entry for Friday (below) and we clearly see that it was a significant celebration for all of them. I so appreciated Walter’s observation on Philippians 4 that we find joy not because of life’s circumstances but often in spite of them. I loved Uncle Bob’s specific word to Wilson, Max and Olivia on how he has seen them respond to the circumstances facing our family. I loved the slideshow and the worship. Missed out on most of the food because I was having too much fun visiting, but love that Sydney and her team blessed us with the leftovers (those PB&J bars have got to be illegal).
A future blogger perhaps?
For those who couldn’t join us, we’ll work to get some pictures up and on-line shortly but in the meantime I’ll wet your whistle with the lyrics to the song we asked Marlin to sing (and in hindsight, we feel it was very unfair to ask anyone to try to sing in that room with very few dry eyes). As Trish mentioned in the program, it’s a song we’ve played in our house repeatedly around the birth of each of our kids as it’s been our prayer for all of them. All the more for Rudy on this week as a true smile has finally emerged:
Sunrise of your Smile–Michael Card
Reject the worldly lie that says,
That life lies always up ahead,
Let power go before control becomes a crust around your soul,
Escape the hunger to possess,
And soul-diminishing success,
This world is full of narrow lives,
I pray by grace your smile survives.
For I would wander weary miles,
Would welcome ridicule, my child,
To simply see the sunrise of your smile,
To see the light behind your eyes,
The happy thought that makes you fly,
Yes, I would wander weary miles,
To simply see the sunrise of your smile.
Now close your eyes so you can see,
Your own unfinished memories,
Now open them, for time is brief,
And you’ll be blest beyond belief,
Now glance above you at the sky,
There’s beauty there to blind the eye,
I ask all this then wait awhile,
To see the dawning of your smile.
For I would wander weary miles,
Would welcome ridicule, my child,
To simply see the sunrise of your smile,
To see the light behind your eyes,
The happy thought that makes you fly,
Yes, I would wander weary miles,
To simply see the sunrise of your smile.
The time of dedication ended with a prayer for Rudy from Philippians 4:4-7…we share a paraphrase of it below and ask, humbly, that you join us in praying these verses over Rudy that he may experience the richness of a life lived knowing the nearness and love of God.
Dearest Rudy,
Delight yourself in the Lord
Yes, and find your joy in Him
Be known for your gentleness and never forget the nearness of our God
And don’t worry – whatever is going to come
Just tell God every detail and the peace of God that no one understands will come to you
No, don’t worry
Just tell Him every detail and His peace will come to you.
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.
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!
Post-race congratulatory hug!
Cheering on the L.A. Falcons!
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.
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.
Rudy's first wedding 5-22-09
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.
post-wedding fun with Grace
Perhaps there's some Canadian godparent greeting we weren't advised of
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.
Charlie's not the only one with angels.
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.
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!!!”.
Giddy-up Cowboy!
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.
The lack of posts this week is less an issue of having no information to share and more due to the fact that life with Rudy home is busy…leaving little time for any of the “extras” in our routine! I’m embarrassed to admit that I crashed on the couch well before the big kids’ bedtimes more than once this week. Ha Ha The adjustments continue, for sure, but the good news is that Rudy is doing well and enjoying life at home since his discharge last week.
Our week was filled with many appointments as a follow-up to his discharge. Everything is checking out okay. Rudy’s SB cardiologist feels his Glenn may need to be scheduled within the month. My prayer has always been to have Rudy home for a full 2 months before we engage in the next open heart surgery so I continue to hope we can put it off until July. A heart catheterization is scheduled for June 4th which will help determine when the Glenn should be scheduled.
One of Rudy’s appointments was with a pediatric eye MD in Ventura. There has always been concern about Rudy’s eyes wandering and, often times, fixated to the left. This was particularly evident when he was in the hospital but I’ve noticed a distinct improvement since we’ve had him home. The opthamologist feels there may be a need for surgery in the future but would like to give Rudy’s eyes a chance to strengthen and correct themselves. We’ll reevaluate in a couple of years. He’ll definitely need glasses which will be prescribed when he starts to walk but, otherwise, his eyes are healthy for which we’re very grateful!!
When we weren’t off to an appointment, I was home on the phone working to set up various services for Rudy and trying to navigate the whole insurance/medical services system. This is not one of my strengths so I probably made it more frustrating for myself than need be. I told Rolf last night that if taking care of Rudy is all that we had to do, the journey would be pretty simple…it’s all the logisitics and communication with outside agencies that complicates the process for me…a bit of a challenge for an introvert, I guess!
The older kids are starting to wind down their school year as the official countdown is on (just 3 more weeks!) and in that there are a ton of special school activities and programs to prepare for so they are quite busy, busy, busy!!! It’s pretty staggering to think about the fact that Rudy came just one month after school started and is settling in at home just one month before the school year ends – forget “where has this past week gone?”…where has the school year gone?!!!! Life is speeding by at rocket speed…with the Glenn just around the corner, I don’t imagine life will slow down anytime soon but I do welcome the lazier days of summer. 🙂
‘Woke up this morning praising God for the cooler temps and the thick layer of fog that rolled in late last night and pushed the fire back up the hill away from Santa Barbara proper. His mercies are new every morning…and I’m grateful for the relief today. Praying, now, that this window of relief will be long enough to allow the fire crews to get the upper hand.
Rudy is sleeping and comfortable, Rolf and the kids got all dolled up (see pic below) to go to Westmont College’s graduation this morning (Congrats Nina, Joe and Becca!!) and I’m holding down the fort here at home with Rudy. Thanks, again, for your prayers and concern!
As Rolf mentioned earlier, the winds shifted late yesterday afternoon and the firestorm raging in Santa Barbara started heading our direction. As a result, we woke this morning to a thin blanket of ash on everything. Our kids have never experienced the joy of a snow day before but they came close today when they bounded through the door just minutes after we sent them off to school on their bikes announcing “Mom, Mom School’s closed!”. As we watched the ash fall from the sky it felt like a snow day. ..okay, not really, but it provided some excitement at the start of our day nonetheless.
As you can imagine, today was kind of disorienting. I spent the day getting Rudy settled back into the home routine again all the while making mental notes and contemplating how we would evacuate this little guy and all his equipment if we had to. Right now the evacuation WARNING (not yet mandatory) boundary ends just east of us at Fairview Ave. – about a mile away. At this point, fire isn’t a threat to us…what would prompt me to evacuate is the air quality. So, we’re keeping an eye on the news coverage, keeping a close eye on Rudy and will come up with a plan of action should we get the reverse 911 call that alerts us to any evacuation warnings issued in our neighborhood.
Rudy slept almost the entire day…like the rest of us, he is hot and sweaty and we are doing our best to keep him cool but it’s difficult because Rudy is somewhat housebound and we’re kind of living in a furnace with the doors and windows closed up tight. Rolf was able to take the older kids down to the beach south of Santa Barbara this afternoon and the kids enjoyed a break from the less than favorable conditions here in Goleta. Although wildfires are not uncommon in our community, the current situation is the worst long-time Santa Barbara residents have seen. For us it’s just disorienting and uncomfortable but our hearts are burdened for the thousands this firestorm has displaced and for our friends who are and will be legitimately threatened before this thing is under control. Currently the major hot spots are in unpopulated areas high above Santa Barbara…we are praying for cooler temps this evening and for the sundowner winds to be silenced. Sundowners pick up in the evening and are hard, dry winds that push off the mountain ridge toward the ocean…these winds have fueled the fire the last couple of days pushing it toward the populated areas of Santa Barbara that lie between the mountains and the coast. We’ll keep you posted as things develop…
Rudy’s discharge yesterday was, once again, met with lots of well wishes from our dear friends in the PICU/CTICU as we made our way down the hall. As always, we are so grateful for the TLC Rudy receives at UCLA and we pray these next several weeks before his Glenn will be spent at home getting bigger and stronger.
Discharge Day 5-7-09 Dr. Bulut, Dr. Brian & Nurse Jessica
Rudy's Beat 