Check out our super star today…he took to a bottle of breastmilk with great ease and showed-off for OT Nicole how he can down 15ccs (=1/2 ounce) in 2 minutes!! Ha Ha Rudy reached the goal of full feeds (30ccs/hr) around 3am…they started him on breastmilk this morning at 11:00am and as of 9:00pm there hasn’t been any fluid drainage…they’ll want to watch it close for 24 hours but so far so good! Today is also Rudy’s first full 24 hours on the trach collar and he’ll stay off the vent indefinitely at this point. I think it’s kind of interesting that he reached both target goals on the same day! Break out those beads!!!
As for me, well, my day was rather full. I was trained in CPR for an infant with a trach and in the daily trach cleaning process as well as the cleaning of the g-tube AND I changed out Rudy’s trach for the first time (something we’ll have to do at home once a week). It all went smoothly. All of Rudy’s care will be time consuming, at first, but doable. My biggest concern in bringing him home, at this point, is keeping him infection-free between now and his Glenn surgery…don’t be surprised if you see our family walking around with travel-size bottles of hand sanitizer hanging from our necks! 🙂 Rudy’s room was one continuous string of folks coming in to talk to me about all kinds of treatment details. We’ve only just begun this discharge process and already there is too much information to process and retain but like we’ve done from the very start of this journey we just need to take it ONE DAY AT A TIME.
Rudy and I got to say our first “goodbye” today to Dr. Rick. He will be gone the next two weeks and he came in to say goodbye at the end of the day because, as he said, he hopes we’ll be gone when he gets back. Ha Of course, we’ll see him soon enough at our follow-up appointments for which we’ll need to come back but it was nice to say an official goodbye nonetheless…another step closer to home.
Speaking of home, I hope to get an early start for SB tomorrow as I’d like to stop at WalMart on the way to get a crib mattress and sheet for the little lad. Rolf will come for his normal weekend shift with Rudy and then the kids and I will come to LA for a couple of days early next week for the start of their spring break. We might get to take Rudy outside for the first time (on the peds patio on our floor) on Monday if I can get it coordinated with the nursing staff and folks over at Child Life. Please pray the logistics of that outing will come together…it sure would be a special moment to share together as a family. The first of many, many shared moments to come, we pray!! Lovin’ you all from Rudy’s room…
Rudy's Beat 
Great News Big guy. Enjoy your milk and do well.
Hugs and kisses.
Great job Rudy ! I love the way his little eyebrow would go up. You can tell he really enjoyed it. Great day. Blessings- Cindy
Hey Rudy. On ER tonight they showed a bunch of kids at a special heart camp, and one of them has HLHS. I bet the girl they showed really has it and she sure looked healthy after her heart was all fixed up. I bet that will be you in a few years, having a blast at camp. I can’t wait to see those photos.
Drink up Rudy darlin’! Loving you from here! What an exciting day!
Oh Trish and Rolff, I’m so super excited to hear of all this great news! I bet Rudy is sayin’ “It’s about time I get to taste some of the good stuff!” We are praying for all things to fall in place!
what a way to start my day……..good news…….so much going on…..so much to learn….but you will do it, anything for Rudy…….give yourself a pat on the back, and a hug for Rudy……Dawn’s Mom
What exciting news! I love the video. We’re so happy for all of you! I’m praying for a great family outing early next week. 🙂
Rudy is ready for a Chick-fil-a milkshake! Go Rudy!
What a blessing!! This is so awesome I am speechless. Thank you Jesus for this true miracle!!!! Love you
THAT WAS AWESOME!!!! Rudy looks like he is ready for a bigger bottle. He is doing so well. Im so happy to hear that the words going home are more real now and that you are taking the steps to do it. I know its going to all go so fast for you now. Like you said one day at a time. Ill see you guys soon!!! YEAH! Go Rudy Go!!
Bless your heart, Rudy. Grandpa and I just watched the video of your first feed. Isn’t it fun to get some reward after all that sucking on the ventilator tube? Our hearts are thrilled for you and for your precious mommie and daddy and Wil, Max and Livy Jo. Our hearts swelled with joy and thankfulness that you have taken this big step so happily. Before you were born we prayed for a miracle and we have been blessed with watching many miracles of care and success that bring you to this point. Wish we were there to see this in person but the video has made our day. Love, love, love to all!
That is too cool for words. Look at that kid chow down! God is good and I am so happy for you all. Thank you so much for sharing this great moment. Love, Kelly
Oh my! That brought tears to my eyes! This will move you into a whole new era of closeness! Prayers for continued progress.
YEAH!!!!!!!
He took that bottle like an old pro! What great news for Rudy and your family. Thanks for sharing this “first” with us out here in Rudy Land.
I am so happy for all of you!
Rudy, you are a STAR! As a grandma of two little boys, watching the video was, well….”my cup runneth over”. God is so good! God truly is our Jehovah Rapha! Praise him! Love and continued prayers for progress. Cousin Dianna
The single most beautiful thing I have seen in a long long time! I love the way his little eyebrow raises when he is eating, as if in approval of how good it must feel. And his little baby bird mouth when she removed the bottle “more, more! ” The best video on the net I have seen!!!! Hugs, cheers and prayers for all to stay stable.
Happy Day Rudy!!!!!……loved watching you ENJOY the taste of REAL FOOD and wanting more!!!
I had to watch it over and over! Praise God!
OH MY GOSH!! Rudy!! Look at you!!!!!
Blessings to you, Rolf and Trish!! Wow…things are really coming together!! I had thought maybe he might go home without the trach collar, but I guess you’ve got the maintenance down!
This is INCREDIBLE good news!! I am on cloud nine for you all….over the moon, really!
Much love!!
Congrats on these huge milestones, sweet Rudy!! You go guy!!
Love and prayers, Jane and Joe
FANTASTIC! Lots of cheering and clapping from the little hospital in the mid-Pacific.
Once again, Rudy rocks!
Congratulations, Rudy, and well deserved bravos to parents and all the team! Oh, and I think our dear Lord gets some credit also!
this is HUGE! praying that all goes smoothly…..
love & blessings, Linda
OMG!!! This is just too precious of a blessing!!! God’s victory is definitely here! Go Rudy!! Chug a lug!!
Keep the faith and the milk coming!!! LOL!
xoxoxo,
Tanya
HURRAAAAAHHHH for Rudy!! yummmmeee.
we love watching you drink from the bottle and we LOVE you!
Mayali, Kyra, and Aunt Andi
Hi Rolf & Trish: I haven’t been commenting because I was afraid you might be inundated with mail. But I do want you to know that I read about Rudy daily and pray for your family as you are going through such an emotional roller coaster ride.
Rudy looks like he’s doing great. My prayer is that he will know when he’s home surrounded by those who love him to pieces and that will give him additional strength to continue fighting until the day that he gets a complet, perfect bill of health.
Blessings,
Laurette Connelly
I just watched the video, he seems to be enjoying his food.
You’ve come a long way. May the God of all comfort continue
to lead you home.
Laurette
Santa Barbara here we come!! Job well done Trish and Rolf. A trip home that is well deserved.
Thank you UCLA for the gift of healing.
What a journey for all of you! I was so excited to read the latest on Baby Rudy! What a miracle! May each minute together as a family be the best ever. I have kept each of you in my prayers since day one and will continue. I will look forward to the day when Rudy joins you at La Patera to pick up your other 3 beautiful children. God bless each of you. Ginny Craven & Family
Wow! Let the countdown begin! I am so thrilled for you that plans for a homecoming have started! WOW! Let us know if we can help!