If ever there was a Mother to celebrate…

Mother’s Day has a new significance for me this year.  I would have always said I live with a great one, but in the last year my concept of greatness has been enriched.  Yes, there’s her organization and creativity; her willingness to serve and volunteer; her concern and her laughter; her daily sacrifices and priorities that become very clear when I’m left to handle them myself for extended periods of time.  We’ve reaped the benefits of motherhood in our family and tasted much of the joy and fulfillment over the last 12 years.  This year we’ve caught a glimpse of how much it can demand—and in trying circumstances Trish has been an amazing example to all who have been fortunate enough to observe her.  I’m the lucky guy who got a front-row seat.

We tend not to do much of the traditional when it comes to such celebrations.  Like I do every year, I floated the idea of brunch at the Biltmore or Bacara and got shut down.  After my shocking discovery this past week, I don’t think she would twist the dagger and suggest McDonald’s, but we’ll probably keep it simple and not spend our time out waiting somewhere.  The kids had various projects in the works at school, but the unexpected day off due to the Jesusita fire means they weren’t able to bring them home.  Max had additional consternation yesterday:  he started a small craft project to make a substitute gift, got interrupted by the beckoning swimming pool, and returned to it later to discover that the conscientious and efficient mother he was trying to honor had cleaned it all up.

But we do have our standby gift ready.  Several years ago, the boys and I made Trish a garden fountain out of some flower pots.  It brought a few weeks of peace and tranquility to the back yard until an errant skateboard put it out of commission.  It was then added to the list of “things that only take Rolf 10 minutes but will take him a year to actually do”.  The next year’s Mother’s Day gift was…to fix the fountain—until Livy stuffed the pump hose full of gravel after a few weeks’ enjoyment.  The next year it got hit with a football.  You get the picture.  I’m not sure Trish recalls that I packed up all the parts when we moved, but after a year’s hiatus the kids and I fixed the fountain again.  Only cost me $4.23, reminding you once again of my trademark ability to woo my wife.  No ladies, I don’t have an eligible twin.

I actually did go out in search of something other than my usual goofy card this year, but couldn’t find any “serious” ones that spoke to the journey we’ve been on this year.  Lots of words and pretty pictures, but none captured it.  So, I went with goofy and wrote in what I wanted to say.

I am including the poem below as a Mother’s Day tribute.  There might be parts of the heart community where it’s reached cliché status, but it does speak to so much of what we’ve been through.  I offer it first and foremost, as a tribute to Trish, but also to the heroic moms we’ve been introduced to over the year who have provided inspiration and comfort as they contend for their kids.  As I read it, I especially remember those mothers whose little ones aren’t with us anymore—may the admirable grace and strength they fought with be met with comfort and peace today.


The Day I Became a Heart Mother

One day my world came crashing down,
I’ll never be the same.
They told me that my child was sick.
I thought, “am I to blame”?
I don’t think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I’ll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child’s bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can’t know your ways….no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he’s here,
but my heart begs, “PLEASE let him stay”!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, “will he be alright?”, to watching him reach out his hands.
With every smile my heart just melts, despite life’s harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It’s the door to his beautiful heart).
God must have known how much I’d love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.

– Author Unknown

Tender Mercies

     ‘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! 

May 9 001

Let It Snow, Let It Snow, Let It Snow

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
Discharge Day 5-7-09 Dr. Bulut, Dr. Brian & Nurse Jessica

Home, Smoky Home.

Drama seems to surround Rudy even if he’s oblivious to it.  Trish made it home after an uneventful trip and Rudy has been asleep almost continually since he’s been home.  We had a good visit from Jane, our visiting nurse and she gave him a thorough checkover and made sure we were all clear on the discharge instructions.  We’ve been giving him all of his feeds through the G-tube at OT Nicole’s suggestion to just let him relax.

Rudy’s brothers and sister are excited to have him home, but this evening we’ve been focusing a good bit of attention outside the house tonight.  The wind shifted and the fires are headed our way.  We don’t seem to be in any danger, but the air is such that we’ve had to close the windows making for a rare night where we wished we had air conditioning–or maybe even long for the uncomfortably cold climate in the ICU.  More than anything, it’s tough to go up on the roof, see the flames and think of friends’ addresses within the rapidly growing evacuation zones.  Gonna be a long night, but Ithink we might be losing sleep over something other than Rudy.


Trish just called to say she’s loaded and rolling!  OK, more specifically the car is loaded–I’ve learned I need to make these kind of things clear in the recovery community.

They are on the road and driving and WE CAN’T WAIT to have Rudy home.  Trish said Rudy is looking out the window with eyes wide open in wonder.

Yahoo!!!  Less fanfare than last time, but no less excitement.

Loaded and Ready…

Well, Dr. Bulut gave us the order to be discharged at rounds this morning, I loaded my things in the car and have Rudy’s stroller packed full with medical supplies they are just going to throw out after we leave so we are ready to go, go, go!!!!  I signed the necessary papers and have our updated list of meds…now we’re just waiting for the medical supply folks to arrive with the oxygen.  After a quick training on how to use the equipment, Rudy and I will hit the road and will not stop until we get home (no potty breaks for mommy!!!)  I’m praying for a smooth, quick ride especially as we make our way past the fire area in SB (hoping there isn’t any delay on the 101 Freeway).  I’ll post once we’re safely settled at home.

Be Still My Soul!

It’s so funny…on the drive down to L.A. this morning I listened to this hymn over and over thinking “I’m so thankful I’m at peace…things are looking good at UCLA…I’m going to pick up Rudyand get him home, YIPPY, etc, etc, etc”.  Then I walked into Rudy’s room and was met by the charge nurse with the news that Rudy needed to stay for another day of observation because of an episode that happened earlier.  “How could this be?  Rolf just talked to Nurse Courtney and all was ‘a go’!”.  BE STILL MY SOUL…I had to remind myself.  As it turned out, the episode was a particularly disturbing one and I don’t doubt keeping him an extra day was a wise move, it’s just that these curve balls always occur in the 11th hour forcing us to stay which puts Rudy at risk for catching another bug or spiking another fever…it can feel like a vicious cycle sometimes.  “Be still my soul…in every change, He faithful will remain”.

So, apparently this morning around 6:30am Rudy’s sats plunged into the 40s (not uncommon for him) and he became agitated (also not uncommon during his episodes).  The nurse called for help when his eyes rolled back in his head and Dr. Robert (who wasn’t attending on the PICU side but happened to be standing right outside Rudy’s room) responded to her call and began bagging Rudy when he didn’t detect any chest movement.  Ugh!  Now at first I wasn’t too concerned because the desats, agitation and even the eye rolling are all things we’ve seen before and from which he usually recovers pretty quick but the apparent lack of breathing is what concerned the team that rounded this morning and what dc’ed the plan for discharge.

In response, an echo and xray were ordered and both showed that the heart and lungs are clear so there really isn’t any explanation for the low oxygen sats.  From 10am-2pm Rudy sat-ed in the 30s and 40s pretty consistently by 6pm he was sat-ing in the mid-70s and there really wasn’t any difference in the way he looked from one to the other!!!  That’s what is so maddening about it…if it weren’t for the monitor, I wouldn’t know he was in dangerous territory!!!! 

So my prayer this evening is that Rudy’s numbers remain strong throughout the night, that no fever develops and that he will rest comfortably and soundly all night in preparation for discharge TOMORROW.  As of this afternoon, the team ordered to send Rudy home with oxygen.  Our discharge coordinator started working on getting it set up with our medical supply company right away so, prayerfully, the logisitics of all that won’t be what prevents us from going home tomorrow.  Once again, our family was pretty disappointed this afternoon and Rolf and I fear our words are starting to sound pretty empty to the older kids as our claims of “bringing Rudy home today” aren’t materializing.

Of course, watching the news all afternoon kept the goings on here at UCLA in perspective as I watched the community of Santa Barbara ablaze.  We are so grateful that our neighborhood and home aren’t threatened but many of our friends are being evacuated and our prayers are for the hundreds affected by this latest fire storm.  Thank you to the many who called or emailed concerned for our safety…please join us in praying for our community at large.

As always, we’ll keep you posted as tomorrow unfolds…thank you for your support and prayers through this last hospitalization…a harder adjustment after having the little monkey home for a couple of weeks!  🙂

Countdown to Discharge

As I write this, Trish is just a few exits away from UCLA (the last couple miles on the 405 can make the otherwise smooth drive interminable).  I spoke with Nurse Courtney this morning and she reported that everything is a go to go through the discharge process once Trish gets there.  I’ll be by the computer to give updates on the journey back home.  Here’s praying that Rudy has no idea what’s going on until he’s well underway.

It bears mention that this is NURSE APPRECIATION WEEK.  I’m not sure there’s a group our family has greater appreciation for.  So I’m going to re-watch the slideshow of Team UCLA a few times today.  Any nurses checking this should track down Trish today as the “Queen of Thoughtful Gifty Things” will not disappoint.  Many thanks to all our Superstar Nurses!!!!

Smooth sailing on Tuesday

Time for a quick post as we’ve got fire again in SB.  The lights just flickered here at the office so I’ll rush to get something up in case we lose power.

I just called down to the ICU and got a good report from Nurse Dawn.  She said that Rudy is calm and happy.  His sats have been holding right where they need to be.  He got his last antibiotic dose this morning and the last set of labs was perfect.  The cardiology team rounded this afternoon and concurred with the discharge plan, so we’re set to go.

Trish, having taken today to get rested up, will make the drive to go fetch him tomorrow.  Turned out she just had a virus which seems to have run its course.  I slept well in my own bed so we’ll be ready and energized to have Rudy back home–the big kids can’t wait.  Stay tuned.


Final footnote–there might be some of you who might be wracking your brain wondering where you’ve heard of Nurse Dawn before.  Check out more about her other work here.  Rudy’s got himself a celebrity nurse!