Alrighty, today marks week 24 and Rudy continues to march forward. His trach collar sprints were lengthened to 4 hours so we are getting closer to getting rid of the ventilator! Earlier this morning there was talk of introducing breastmilk again but that has been put on hold until the PICU team consults with the GI folks again. It would be advantageous to feed him breastmilk while the drainage tube is still in so we can see real quick if chylous is accumulating again, however, Rolf and I were concerned it would be too quick of a change since he’s only been feeding for a couple of days…he’s getting nutrition from Tolerex (a low-fat formula), he’s tolerating it so far and he’s comfortable so we’re not opposed to giving him a few more days to stabilize. So, we’ll see what the team thinks after consulting with the GI specialists. As a result, he’s still at 10 ccs of formula an hour and doing well with it.
Speaking of breastmilk, it appears my idea to figure out a way to “skim” my breastmilk isn’t such a crazy notion after all. The reason Rudy’s system has been unable to tolerate my breastmilk has to do with its fat content. The long chain tryglicerides (fat) contained in breastmilk are absorbed into the lymphatic system and end up draining out the chylous fluid. As a result, treatment for chylous invovles a medium chain triglyceride-enriched diet (i.e. Tolerex). One day a few weeks ago, I left some breastmilk on the counter and when I came back to it, it had separated and it dawned on me that maybe there’s a way to skim the fat off the milk which, then, might possibly allow it to get absorbed into the body. I shared my idea with a couple of the fellows who were open to discussing it more and then I talked with Christy (lactation nurse) today who said she worked with a mom about 4 years ago whose 4-month old baby had a long battle with chylous fluid and she ended up doing just that!!!! She found a “spinner” that would separate the milk and Christy had a device that could test the fat content to make sure it was low enough. This mom gave the non-fat breastmilk to her baby and the baby tolerated it well…after a while, she gradually increased the fat in the milk until ultimately the baby was on “full-strength” breastmilk. Isn’t that amazing? Anyway, it gives me something to research and a known case to bring before our medical team if Rudy’s case comes to that. At least there’s hope that if his body doesn’t absorb my breastmilk when we try it next we still may have a “modified” breastmilk option! If nothing else, it keeps my mind busy…
Our little monkey enjoyed sitting up today while on my lap…here’s a little peek:
Rudy's Beat 
I love to see Rudy in action. I love his wild hair. Great job sitting up big boy. Keep up the good work. I loved your oms idea about the skim milk, hope you get to try it soon. Still praying for your every need.
Hugs and kisses.
did you ever think you would know more than others……just joking…..Rudys is looking good……prayers for today…Dawns Mom
Wonderful progress sweethearts. It is SO good to see you holding that head high and looking straight into the camera, Rudy. WOW! We are so proud of you and thank God for this further step of growth. You are such a courageous little guy (you have terrific role models–your mommy, daddy, brothers and sister). Keep up the good work.
Looks like Rudy is growing up. He is so cute sitting up like that. And I love the fact that you are doing your own research–all part of the team effort to take the best care of Rudy possible. It takes a village to raise a child–yours is just a different kind of village! Prayers for all of you and your “village!”
Holy Cow I can’t believe that its been 24 weeks. And look how big he is. I wish I was there to sing a happy happy birthday (or at least hum it) to my friend Rudy!! Im so glad to see him doing so well!! All our love, Go Rudy Go!!!
Hi Sweet Rudy!! What a big boy you are! You have the best family in the universe ! Keep thinking Trish, you are steadfast in your determination to do the best for your son. Bravo to you for thinking of a way to give Rudy your “Liquid Gold”. My thoughts and prayers are with your family. I think of you every day. Blessings my friend, Cindy
Dear, Trish I want to share a Bible verse with you God will keep you in perfect peace… Isaiah 26:3a
I am praying that you will fill Gods peace. And for Rudy too.
Love, Stevo.
I always lnew you were so smart, Tish. Way to go Rudy!!! Doing good.
Hi Rudy and Mom and Dad
Trish—you may have just hit on an idea for breastmilk that seems so simple, but fewer than few have thought about it. Including the MD’s !!
Rudy—you are on your way. Thumbs up for you, your parents, sister and brothers !
Peace and love,
Betty and Mike
Trish I think you need a really Big beed for that thought. Love you.
So glad for the progress Rudy is making. He was so cute sitting up. I saw the great pictures of you, Rudy and the turtle on facebook.
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