The start of the new year has certainly directed Rolf’s and my thoughts to Rudy’s upcoming surgery but, apparently, it’s weighing on the kids’ minds too as Max and Olivia composed their own version of the following Christmas classic over the weekend…
“The Twelve Days In The Hospital”
On the twelve day in the hospital the doctors gave to me…
12 naps a day
11 x-rays of me
10 doctors operating
9 nurses dancing
8 hospital gowns
7 hopes for the future (how profound and absolutely sweet it this one!)
6 bottles of milk
FIVE STITCHES IN THE STOMACH
4 stuffed animals
3 pacifiers
2 dirty diapers
and an open heart surgery!
As scheduled, Rudy’s dance card has been full this week with visits -so far- to Dr. Harake (SB Cardiologist) and Dr. Pornchai T. (UCLA Pulmonologist). Both appointments went pretty well…no changes on the heart front and we have the heart cath scheduled for Thursday January 28th. Rudy is second on the schedule that day so ours will, most likely, be an overnight stay like last time. There is also the remote possibility that they will go ahead and admit Rudy into the hospital for the Glenn surgery at that time depending on what they find during the cath so we’ll plan accordingly. Either way we hope to have a plan for the Glenn as a result of this heart cath.
Rudy and I had a nice drive down the coast to L.A. on Tuesday. Dr. Pornchai did another thorough examination of Rudy and was a bit concerned this time with the way he was breathing. His breathing was a bit labored but he was also a little worked up after the long car ride, a late feed, being examined (normal baby stuff). I didn’t notice much difference from the way he normally is which then left me feeling like maybe I’m not reading Rudy right…what am I missing?…should I be concerned?…etc, etc. I’m tellin’ you, the mind games you start playing with the smallest of triggers can drive you crazy. Dr. Pornchai added a nebulizer med to Rudy’s regimin so we’ll start that, keep an eye on him and trust that we’ll know when something is wrong…ugh!
Of course, we had to pop up to the CTICU quickly while we were in the neighborhood to say “hi” to our staff friends and the sweetest part of my day was running into Dr. Andy M. who we haven’t seen since we left the hospital back in May. As one of the attendings in the PICU/CTICU, Dr. (Papa) Andy oversaw Rudy’s care on numerous occasions and he was so pleased to see how Rudy has grown. In his sweet, quiet way he just starred at Rudy and marveled so sincerely at how beautiful he is. Ahhhh, music to a mother’s ears. It is always so reassuring to check in with the folks on 5 east as they know so intimately how far Rudy has come. As the atmosphere in the unit on Tuesday was, once again, serious and intense, I hope our quick visits are mutually encouraging!
Did I mention Rudy and I had a nice drive down the coast? We are definitely blessed with a pretty commute down to L.A….especially in the winter time. I LOVE Santa Barbara in the winter… the sky is so clear and blue, the air is fresh and you can actually see the channel islands! Rolf captured these pics of Wilson on Sunday…a calm Pacific Ocean-
Water calm enough for Rudy!!!…I look forward to the day when Rudy can join them on one of their kayak excursions!
Rudy's Beat 
Well, welcome to 2010 with a wallop to the stomach, eh? Just remind yourself that you live with and care for this beautiful boy every single minute of every single day and Dr. P. sees him every few months only. You’re not missing anything, Trish, you’re right on top of it and the testing on the 28th will, hopefully, give you a bit of a road map for what comes when. Dr. Andy’s response is the one to hang onto and remember and meditate on – stare in wonder at what God (and you and Rolf and your amazing kids) have wrought in this boy!! He is a miracle, all there is to it. And all of you have beautifully partnered with our good God to allow that miracle to blossom. Prayers against the tentacles of fear and uncertainty that can creep in and paralyze!!! Prayers for the fullest realization possible of this wonder named Rudy.
P.S. LOVED the song and the gorgeous water pictures. Oh, my.
Will be praying for the future for all of you.
Praying for you guys and all the timing of things. They will come together. God has brought you this far…
I enjoyed the glassy ocean today while doing my lesson plans overlooking the ocean in Corona del Mar. It’s so beautiful, isn’t it!
Love you friends!
The focused loving care that each of you in your family give your beautiful Rudy is inspirational to all who follow his path to wellness.
Katie’s Nana
Great song, beautiful photos.
Praying all goes well with all of Rudy’s docotor visits.
Hugs and kisses.
So we keep our vigils going…..Rudy at UCLA yesterday and Grandpa Dick had another MRI today. Now we all wait some more for test results and future plans. Let us remember it is “one day at a time” and not worry about tomorrow. We are all doing great under our circumstances and. although it is tiring to be in a state of uncertainty, we are all doing a great job of coping. Hang in there, sweethearts, and know that Phillipians 4:8 is still a list of things to think about and count our blessings.
I love you, Grandma Jo
Dear Rolf, Trish and family.
Happy New Year! May God bring you the peace and strength needed for what this year has in store for Rudy and all the family. As always, my prayers are with you!!!!
Love,
Tanya
I continue to check in on Rudy and your family and keep you all in my thoughts.
Please don’t doubt yourselves; but I do understand your feelings. I always get lulled into our daily routine and then go to the doctors and leave feeling the way you describe. The fact is though that no one knows Rudy like you all do. Moms and Dads have great instincts with their kids. Trust yourselves, you are doing great.
I will keep Rudy in my prayers for a very successful and uneventful Glenn. After his Glenn is when Garrett’s development took off. It was slow going between the first two surgeries. I pray the same happens for Rudy.
BTW, I gave the crosses I got from you to my nieces for Christmas. They loved them. They were very beautiful and I put them on silver chains for them. I explained that Rudy was like their cousin Garrett and they said they would say their prayers for Rudy when they say their prayers for Garrett. I still marvel about how odd it is that I knew Rolf when we were teenagers and then discovered just through chance, 25 years later that we both have kids with HLHS. Just crazy…
BTW, those are some absolutely beautiful pictures. Living in the midst of such natural beauty is a really gift.
Keeping you all in my thoughts.
Kathy
you can tell, Rudy doesn’t miss anything when being song to, his eyes were up at his brother and side to his sister; to be loved so much. the pictures almost seem unreal, praying for Rudy’s upcoming heart visit, Nick’s Grandma