Today was a full day…after a challenging day yesterday, Rudy continued to struggle today with an inconsistent heart rate and labored breathing.  At one point he broke into a cold sweat and his coloring turned for the worse…it was unsettling to watch him.  On the other hand, today’s chest xray showed some fluid build-up in his chest but not enough to need another chest drain so for now he remains tube-less!!!  The night team will watch him closely and if his chest starts to look bigger or his respiratory condition worsens, they’ll reconsider.  For several weeks now we’ve been battling a triple threat…Rudy’s low thyroid function, the fluid in his chest AND malnutrition.  Based on the most recent test results, the thyroid treatment he has been on has increased his thyroid function, his malnutrition numbers have improved and, as I’ve already explained, the fluid is still an issue but getting better so, in general, I think we are moving forward.  Why he has struggled so the past couple of days, I’m not sure, but I’m not going to let it distract me from the slow progress he is making and I’m praying that it is just a temporary hiccup.

We did get to add a long-awaited element to Rudy’s treatment plan today…a little something I like to call “Mommy Therapy”!  I’ve been unable to hold Rudy all this time mainly because of his ET (ventilator) tube and his chest tubes but because he didn’t have his chest tube anymore, I got the nerve up to ask Dr. Dan if I could hold Rudy joking that my holding him was probably the missing link in his ability to get well.  Dr. Dan consulted good ol’ Dr. Rick who gave his okay without skipping a beat and this afternoon I held Rudy (with the help of nurses Alisa and Amy)  for about 45 minutes!  It was wonderful and you know what?  During the entire time I held him, Rudy was calm and his heart rate didn’t dip once…maybe I AM the missing link!!!!!  Ha  Well, this special moment just happened to be taking place while the doctors did their afternoon rounds so Dr. Brian stepped in briefly to see what was going on…as he turned and left the room he said, “That made my day!”.   You can bet it made mine too!! 

I’m so sorry Daddy wasn’t here to share in the moment but maybe he’ll get his turn next as he is feeling a bit better and is planning to make the drive down tomorrow.  Today was another day filled with lots of different emotions but it is ending with a baby boy resting comfortably in his crib and a Mama by his side with a full heart!

Now, I don’t want to take away from the “specialness” of any of the visits we’ve had from friends because we sure appreciate those who have come to meet our little man but yesterday’s visit from Grace was particularly sweet.  Gracie and her husband Marlin are dear friends of ours from the “San Diego” chapter of my life and we have enjoyed watching their family (which includes Nate, Josh, Luke and CeCe) do life together for the past 18 years.  Rolf and I have not only enjoyed their friendship all these years, but we have also appreciated their example of loving Jesus, serving the community around them and, most of all, in raising a family that does the same. 

Because of our deep love and respect for the whole VanNortwick family (affectionately known as the Van Clan), we’ve asked Grace and Marlin to be Rudy’s godparents.  We started the tradition of “adopting” godparents for our kids when Wilson was born in the hopes that these dear friends would commit to pray for our kids, to be an extra source of counsel, love and encouragement in their lives and to help us be better parents.  For that reason, we chose friends who are all at different stages in life bringing with them a variety of unique life experiences to speak into our family’s life.  It has been a rich experience for us to have these dear friends (some close by and some far away) a part of our extended family.  So as we honor Rudy’s godparents on “Rudy’s Beat”, we take time to thank all of you as well for your investment in our family – especially during this amazing test of endurance and patience…for your sacrifice of time in reading the blog and in praying…AND for your cherished friendship!

The Gallery of Godparents…

‘Got a glimpse of Rudy’s precious cheeks today during a vent tube tape change…made me want to climb up into his crib and snuggle those yummy cheeks!   Well, Rudy sure had a hard time settling down today.  At the time of my last post this morning, the RT and his nurse were monitoring him closely after an episode where his heart rate plunged and his breathing was quite labored.  They suctioned his ventilator tube which normally helps calm him down but today he continued to struggle for his breaths.  They then tried to sedate him a bit but that didn’t help either.  Dr. Rick came in, examined him, and ordered an x-ray.  The x-ray showed that his chest tube was not positioned correctly and about to come out.  He felt the best course of action was to remove the tube and see what happens to the fluid in his chest overnight…he wants to give Rudy the night to work some magic and possibly absorb the fluid proving that he doesn’t need the chest tube anymore.  If the fluid does build up again then they will put a new, fresh chest tube drain in tomorrow.  So he’ll be chest tube-less for one night at least.  It goes without saying, though, that it would be WONDERFUL if the fluid found its own way out of Rudy’s chest.    The medical team was in and out a good bit all day and my dear friend, Grace, asked “Is it always this busy in here”.  Nope, not always…

Poor thing!  Nurses Gladys and Angeli and I turned Rudy into our own version of a “Build-A-Bear” elf yesterday while I nervously awaited the call for transport to the cath lab.  I was actually feeling very relaxed and confident most of the day…there really wasn’t any reason to be nervous but there was an adreneline rush let down after-the-fact which made me realize I was a little wound-up. 

Yesterday was also a big day for our friends, the Elliots.  Their little Logan took up residence in the CTICU 5 days after Rudy so we had 8+ weeks to bond with Rayme, Brett and their family while Logan was successfully treated for a serious heart condition.  We celebrate their discharge yesterday and since they are fellow Santa Barbarians, Rudy is looking forward to many playdates with Logan in the future.  Congratulations Logan!!  We miss you but are so thankful for your progressing recovery!!!

Rudy is 9 weeks old today.  His hair is starting to lighten and curl up a bit on the ends.  It makes me wonder if he will have ringlets like Wilson or wavy hair like Max.  He slept comfortably last night and was alert early this morning.  Given the results of yesterday’s heart cath, the plan is to start weaning him again off the vent.  They started very slow this morning taking his bpm down to 30 from 32 – not a huge change but he doesn’t seem to be tolerating it very well right now.  The nurse and RT are standing at his bedside monitoring him closely until he settles down.  Boy, is he agitated!  (Much like his Daddy who is at home still unable to find a comfortable position to get some much needed rest).

So, we continue to wait for that breakthrough in the fluid flow and in his ability to wean the vent.  The numbers that chart his nutrition progress are on the rise so that’s a plus.  I’ll let you know how he’s doing later this afternoon…

Happy Thanksgiving dear friends and family!  Now, I don’t want to dwell on the negative but I do have to admit that I woke up this morning pretty ungrateful…I was having a hard time mustering up a thankful heart.  All I wanted for Thanksgiving was to have my whole family together…I wasn’t asking that it be on my terms at home with a big, fancy dinner…Rudy’s room in the CTICU would be fine as long as we were all together.  Well, I knew at about 6pm last night that that wasn’t going to happen when the chiropractor instructed me to take Rolf directly to the ER because his back pain was so intense he couldn’t administer his treatment.  Off we went to the hospital in Goleta…

It was clear once we got Rolf home and settled for the night that he wouldn’t be riding in a car to LA the next day.  So, this morning Max, Livy and I loaded up the car for our day away and left Rolf and Wilson to fend for themselves at home.  I was heartbroken as I drove away and just, plain mad that the day was unfolding the way it was.

We arrived to find Rudy awake and alert with Oma by his side.  We got the quick report on Rudy from nurse Carina (things are about the same, by the way) and the kids settled into “Rudy’s room routine” all too quickly with great familiarity…put down bags, wash hands, put on antibacterial gel, pat Rudy on the head, play with his crib toys, draw on the white board, get out books and game boy, draw pictures, etc, etc…

And then a sweet thing happened…I read my devotional for today and this quote jumped out at me “Let thankfulness rule in your heart.  As you thank Me for blessings in your life, a marvelous thing happens.  It is as if scales fall off your eyes, enabling you to see more and more of My glorious riches.”.  My heart broke again…I’ve loved Jesus for over 35 years and today was the first day I can remember that I chose to wake up and NOT see ANY of God’s goodness…and I mean NOT ANY!  I know better (!) so I started my list and like scales falling off my eyes, the more I listed, the more of God’s glorious riches I saw.  I obviously have so very much for which I’m thankful but sometimes disappointment can get the best of us and we fall victim to the things in life that try so hard to steal our joy and feeling of hope.  I’m ending the day very different than how I started it…I’m sitting at my baby’s bedside thankful he turned 8 weeks old yesterday, thankful too for the amazing Thanksgiving feast we shared with the staff, residents, volunteers and homeless guests at the Rescue Mission yesterday, for our friend Cesar who got to go home yesterday, for Oma who so generously gave us the past 8 weeks of her time and energy to help in the wake of Rudy’s arrival (we’re going to miss you Oma!!), for the simple joy of decorating Rudy’s room today with Christmas lights and the dancing Christmas tree, for Wilson making his dad a grilled cheese sandwich for lunch after calling me for step-by-step instructions,  for our dear friends whose surprise visit today brought so much encouragement, for Wilson, Max and Olivia who are weary but persevering in our journey with Rudy with great understanding and for Rolf who makes me laugh through tears…making life a little less heavy!  Oh, you get the picture…my list is endless and the night nurse is about to start her shift.  It’s time to leave.    We’re off to Santa Barbara for the weekend to take care of Daddy and trim our own Christmas tree…Rudy will be in good hands for a couple of days!  As always, thank you for loving our Rudy so much and supporting our family through your prayers…something for which we’re ALL thankful!

I’d like to report that Rudy’s chunky cheeks are due to him packing on the pounds but they’re actually a product of the steroids he’s on!  Not much changed in Rudy’s condition today…he was more alert and awake most of the day which was good to see but he was also upset (doing his silent cry) most of his waking hours which was hard to watch.  I’m not sure what to report…on Mondays there is a “changing of the guard”, so to speak, when a fresh medical team takes the reins for the week.  As a result, Rudy’s condition and course of treatment are seen at the start of each week with a fresh set of eyes which is good but it can also be a little confusing when perspectives differ from one attending doctor to the next regarding what direction the treatment could/should go.  For now, Rudy is holding steady with full support and no feeds to his gut but there was talk today of agressively pursuing extubation again this week which contradicts the plan over the weekend to not sprint or wean him off the ventilator for another week or so.  ‘Not quite sure what will transpire this week but we’ll continue to ask our questions and try to make sense of all the medications and lab tests…the positive and negative numbers…the c.c.s and various kinds of fluids we want and don’t want, etc…  And, of course, in the midst of it all, we’ll not forget to love on our little chipmunk while praying for a breakthrough!!!  🙂