Wednesday, February 15, 2012

Switching things up!


Thank you for praying for Jude's digestive system over the last two days. We are certainly appreciative that so many of you are continuing to keep up with Jude and his adventures!

The Lord is answering our prayers but in a different way. Instead of running the test to check on Jude's absorption status they decided to take a different approach for resolving Jude's tummy troubles!

Below you will find my attempt at explaining what was discussed in rounds with the doctors today. I apologize if it is hard to follow or understand. I am super tired today and I am terrible at explaining medical stuff (my wonderful hubby on the other hand is incredibly capable). So, please bear with me!

First, let me tell you that Jude is receiving 10ml of breast milk continuously per an hour. He is also receiving TPN feeds a.k.a. IV nutrition.

So, when I walked into rounds today Jude's doctor said, "Ok, Mom. We have a lot to talk about today!" I was so nervous. I already had Jude's TPN feeds on my mind because Brian and I were talking last night about the risks of being on TPN feeds too long. TPN feeds can do damage to Jude's liver if he is receiving them too long. Luckily, Jude's test to see how his body is handling TPN feeds indicated that Jude's body and liver are handling being on TP feeds quite well!

Now, let me also warn you...I am about to talk about stool/poop a lot. Jude will likely hate me for this one day...but his condition at this point cannot be talked about without talking about his diaper filling capabilities. So, you've been warned!

The doctor said that she spoke with one of the doctors from the PICU about Jude's struggle with feeds. From this conversation Jude's doctor came up with several different approaches to figuring out Jude's feeding/digestive issues.

The PICU doctor explained that with older/bigger babies with intestinal/feeding problems similar to Judes they do not run the tests to measure how Jude is absorbing my milk. Instead the PICU docs focus on if babies are "stooling out". Stooling out = pooping too much and poop that is too runny. And at this point Jude is NOT stooling out.Jude's doctor has decided to take this approach with Jude because it is essential that he comes off TPN feeds as soon as possible and Jude really needs to start making some progress with getting mommy's milk in his little body!

Based on this, here is the new plan for Jude's eating/pooping:
  • They will not being doing the absorption test, but they will be doing a fecal fat study to rule out any other problems that Jude may be experiencing in his digestive system.
  • And the biggest one: The doctors want me to try a non-dairy diet because there is a chance that Jude might be allergic to cow's milk. (besides the tummy troubles, Jude also developed an eczema like rash on his face, chest and arms which also may indicate a milk allergy) So, tomorrow I will be meeting with a nutritionist to discuss how I can change my diet so that dairy products will be eliminated from the breast milk that Jude is receiving. 
  • There are a few more options for figuring out Jude's milk/feeding puzzle if the cow's milk elimination doesn't seem to resolve his problems. But I won't jump into those right now. Instead, I will share those possibilities if the doctors decide to use those methods. Right now we are just hopeful that the cow's milk elimination will help!
Now, for some good news!
Jude is OFFICIALLY off his sedative! Yippee!!! He is now receiving Atavan every four hours in place of his the sedative he just weaned off of. Eventually they will space out his Atavan doses to 6 hours, 8 hours and so on. This is a HUGE step for Jude in his process of weaning off the medications that he has been on for so long. YAY!! Tomorrow they will take out the PICC line in his foot...which is great news and means that he has one less site for potential infection.

What you can pray for:
  • Jude's tummy to respond to the change to my breast milk. Pray that the removal of cow's milk will help resolve his tummy troubles. It will take up to two weeks for milk products to "leave" my body so the changes may be slow.
  • Pray for me as I change my diet. Those of you who know me well know that I LOVE milk products. Milk, cheese, yogurt....anything with milk products are likely some of my favorite foods. No matter what I am going to do this because it may mean that my little guy can really begin to eat!! 
  • Please continue to pray for Jude's respiratory progress. We would love to see him come off of CPAP soon! He is doing well on CPAP but we don't want him to stay on it forever. Pray for his little lungs and pray that they will get stronger each day!
Thank you friends!!!

I leave you with the words to a hymn that was sung at our home church this Sunday (a dear friends of mine sent me the bulletin) and that was also sung at the last church service I attended before Jude was born. I love this hymn and I usually cry through it. I hope it draws you closer to Him as well.

O the Deep, Deep Love of Jesus
O the deep, deep love of Jesus, vast, unmeasured, boundless, free!
Rolling as a mighty ocean in its fullness over me!
Underneath me, all around me, is the current of Thy love
Leading onward, leading homeward to Thy glorious rest above!

O the deep, deep love of Jesus, spread His praise from shore to shore!
How He loveth, ever loveth, changeth never, nevermore!
How He watches o’er His loved ones, died to call them all His own;
How for them He intercedeth, watcheth o’er them from the throne!

O the deep, deep love of Jesus, love of every love the best!
’Tis an ocean full of blessing, ’tis a haven giving rest!
O the deep, deep love of Jesus, ’tis a heaven of heavens to me;
And it lifts me up to glory, for it lifts me up to Thee!


  1. I have been following Jude's journey and all I can say is praise the LORD!! He is good! I learned of your family through Misty and Emily. I just want you to know that I had to take all dairy out of my diet for a year with my youngest. I too love all milk products, but you can do this!! It will be hard, but you will find other things that will work for you. I did soy and cocnut milk, soy yogurt and ice cream and places like Whole foods have tons of none cow milk cheeses. I even got to have my beloved pizza with almond mozz cheese. I pray that you will find this trasition easy. Please let me know if you ever need to vent about a love of dairy!!

  2. Praying for you during this transitional time with your diet! It's hard - I did it for a while when Ava was a newborn because she had the allergy. But it's totally worth it! During my brief stint with no dairy, I learned that Chick-fil-a dips their chicken in milk before breading it! Crazy! But if you call ahead, they will make your chicken special for you with no milk-dipping! :)

  3. Your diaper filling capabilities statement made me laugh! Yep, he will not like the stories you will tell! I thought that I was lactose intolerant for a is doable. You will find lots of yummy things~I love almond milk! I don't know if that is a good choice for you because of the nut base, but it is good! Rosie, you are such a great mom and such a beautiful lady! I am so proud of you! Will always be praying for that wonderful little one that I cannot wait to meet! love you!

  4. Hello there,
    I have been following your blog for a while now and praying for your sweet little guy but have never commented. This post totally hits close to home for me. I have a 5month old baby boy. He has had a rough go of it so far...born at 34wks, had to be intubated, needed feeding tube for a while, came home from nicu after almost 11 days, then got meningitis and had to be readmitted. Then started having bloody stools and some other issues....
    Anyways we went to a GI specialist and they recommended that I take dairy and soy out of my diet. I did...and within probably 48hrs my baby's belly pains and stooling issues were better. He is a totally new baby now. I too LOVE MY MILK. It has definitely been a challenge. Soy is used in many things...our GI said if we were taking out dairy we might as well take out soy and then slowly reintroduce once he is 100% better.
    His whole temperment has changed with the no dairy/soy. Things that I have found that are helpful: Silk Almond milk, the origional flavor, NOT vanilla. SO DELICIOUS ice creams, they make some that are just dairy free and some that are dairy and soy free...I like them. I have also found a baker to make me bread every week with no dairy in it. There is so much I could share....I have been doing this for a little over a month now, so please feel free to send me a message if you have any questions thoughts etc. I have also found some great blogs about being dairy and soy free

  5. I'm so very pleased to hear of the progress that Jude is making! Jude is about where Samuel was at the 2 and a half month mark - and Samuel is awesome now. You're gonna do this, Jude!!! How wonderful for him that you've been able to pump him mama's magic milk and that you are now committed to going dairy free. Sending strength and prayers to all of Jude's warriors.
    Mama to Samuel, lcdh survivor, Feb1/11