Hooray! Hooray! The little superstar passed his swallow test!! It was really quite remarkable to watch the images on the flouroscope…you could tell right away that the contrast fluid was going down the way it’s supposed to. Speech therapist Carol conducted the test and gave Rudy the contrast through a syringe at first, halfway through the test she said, “He’s really sucking on this syringe, I’m going to try a bottle”. The minute she gave him the bottle, he latched onto it like a pro and drank from it with no problem. The whole thing brought me to tears. OT Nichole came down to watch as well and we gave each other a big hug in celebration of Rudy clearing yet another really big hurdle. Like I told Dr. Rick when we returned from radiology, it’s just so nice to have a definitive, no-doubt-about-it, POSITIVE result where Rudy is concerned! Everyone who heard the news was quite excited for Rudy and his BIG step toward home.
There was alot of talk about discharge details today so that certainly added to the excitement. We’re still a couple of weeks away from bringing Rudy home (at least) but it is helpful to get started on the many details that need to be addressed. I go to CPR class tomorrow morning and get trained to do CPR on babies with a trach. Rolf and I both need to practice suctioning Rudy’s trach and learn how to change the trach completely as that will need to be done each week. We’ll need to learn how to care for and administer feeds through his g-tube, etc. We need to find Rudy doctors up in SB and start getting things settled for him at home. Wow, there are so many things to think about right now!!
I tried to put aside the rush of details in my head this afternoon and focus on a little sucking therapy for Rudy. He is clear to start the non-nutritive sucking therapy so we tried it for the first time. I brought him to the breast after pumping empty (he’s not allowed to ingest the breastmilk yet) and let him “find his way”. It’s definitely a new feeling for him and I’m not too sure what he thought of the whole thing but he did finally relax and got comfortable sucking. He isn’t quite latching on securely but he’ll get there…it’ll take some practice and I think he’ll be more motivated to latch on when he’s allowed to drink the milk while nursing. So fun and crazy!!! One of the charge nurses said she has never seen a baby as sick or as intubated as long as Rudy do so well at the swallow test or take so quickly to nursing…our prayers are being answered.
So, the process continues forward…Rudy is currently at 28ccs/hr on his feeds through the g-tube. They’ll, most likely, introduce breastmilk tomorrow and it could take a couple of days to see if the chylous fluid will return. If it does return, he’ll go back on the Tolerex formula and I’ll look more closely at what it will take to skim my milk of it’s fat. If it doesn’t return, then we can get rid of the Tolerex finally start using the MEGA-supply of mama’s milk we have stashed away in the unit! Rudy will spend a total of 22 hours off the vent today which means they will bump it up to 24 hours tomorrow!!! At that point, he’ll stay off the vent and they’ll monitor him closely for a couple of days before declaring him “vent free”. Other than that, he has a couple of meds they need to start weaning him off of and the surgical team will remove his “frankenstien stitches” early next week. Things are falling into place…finally!
We’ll never know what tomorrow is going to bring but it sure is wonderful to end a day with Rudy with a strong sense of hope for a brighter tomorrow.
25 thoughts on “Happy 25-Week Birthday”
What a great report!!! So good to read such a positive one! We’ll keep praying for progress.
PS – Greatest birthday picture in the world! You need to enter that in a caption contest to see what people think Rudy is thinking….we’ve got a few thoughts, but we’ll keep them off-line!!
What a great post. I am so happy to read such great news. I love his 25th week picture. He just wants to get home! You are the best parents.
Dude – give the little champ so hair gel!
Yeah Rudy! You da man!
wow! such fantastic news – on so many fronts! marvelous, marvelous!
i just had to look at Rudy’s picture again. am i the only one who thinks Rudy looks a bit like Marlon Brando? 🙂
Such fantastic news. Tears in my eyes here too! It is awesome to see God’s hand at work in such amazing ways! Continued Prayers around Rudy’s eating! Love to you all!
Wowsers! You da man, Rudy!
Praise the Lord!
Great News! Glad all of our prayers are being heard and answered in our little Rudy. Go Team Rudy!
Hugs and kisses.
It feels like some mysterious, unseen HUGE corner has been turned in the last 10 days or so. Thank you, Lord. Thank you, UCLA med team, thank you Trish and Rolf for keeping us all in the loop so intimately and eloquently. And yes, I definitely see some Brando there!
If he is able to nurse successfully, will you still have to use the g-tube??
Blessings on you all,
This was such a great way to start my morning! I am so thrilled to read such a wonderful report about your little Rudy. Continued prayers from CT.
Guys – Very good news indeed. Sounds like you are that much closer to going home with Rudy in tow!
Rudy is looking great….hair and all…….lots of hugs are being sent from Conn., Nick’s Grandma
What awesome news! God is good. I think Rudy is going to be a rock star, he’s already got the hair for it and the “I’m da man” kind of look. Happy B-day!
What a wonderful way to start my day here at work. Looking at another awesome picture of Rudy and hearing how good God is. Praise the Lord! I’ll be singing softly all day, “Praise Him, Praise Him, tell of His wonderful goodness, Praise Him, Praise Him, ever in joyful song”! Yahoo! Rudy you are for sure “Da Man”!!! Love and continued prayers for progress. ( I think Rudy is saying, “Let’s blow this popsicle stand!”)Cousin Dianna
So so so exciting!!! You all are going to be home before you know it.
Such exciting news! I love it when things are going so well and we can see the results of our prayers being answered. Still praying! Will have breakfast with Oma tomorrow. We might do a celebration dance for you.
GREAT News! Happy all is so positive – and I LOVE the hair!
Lookin’ good, big boy! Reading this post made my day twice as good as it was before!
Awesomest news ever! Rudy Sucks! Yay! Never thought I would say that. I’m going to be out to see you next week. Love you!
I’m so excited for you all! Will pray that there is no fluid of the wrong kind and that you can eat well…love you, Rudy! Go!
Great news! And what an expression — I don’t think he is as excited by the news as you are.
Hooray, hooray! So glad that things are going well. We are praying that he loves mama’s milk! (Alex’s friends from high school)
such wonderful progress…..and praying that it continues!
love & blessings….Linda
We are all celebrating with you all….as you can see from all the posts in response to your GREAT news! Little Rudy is going to just love nursing when he gets the chance…and we’re so glad he sucked that bottle down like a pro! Way to go big guy!!! We’ll be praying with you every step of the way!