Thursday, July 19, 2012

Trying so hard to move and eat!

Happy Thursday friends!

Rose here. Or also Jude's mommy. :)

Just wanted to stop in and give all of you a quick update (as promised!) on Jude and his life at home.

Jude continues to amaze us with his physical abilities. When we brought him home, Jude was struggling with holding himself steady in a sitting position. He was just starting to lift his head during tummy time and he was not rolling. Jude's therapist said that she thought he was about 3 months behind on his physical development because he was unable to use his body like a normal baby his age (the result of being on his back using the ventilator and in the hospital for SO long). In the last few weeks Jude has made great strides in his trunk control and he is holding himself steady in a sitting position more and more each day. He wants to sit up on his own. He is also holding his head up during tummy time and even looking around a bit during his tummy session. He is also wowing us with his new rolling skills! We are super proud of his hard word. Jude has always enjoyed physical therapy and it is obvious that he has a desire to get moving! Please join us in praying that Jude will continue to make progress in his physical development. His new physical therapist is confident that Jude will eventually catch up with his may take several months but he will get there!

I bet you want to know about his feeding abilities!

As you all know, eating by mouth is one of Jude's greatest challenges. When Jude was in the hospital, he was taking a few bites of baby food every now and then. Sadly, when we brought Jude home he seemed to regress a little bit. For the first two weeks we did not have a positive feeding practice session when we worked with Jude. We were feeling really discouraged. But in the last week Jude has been a little more accepting of the work we've been doing with him to help him learn to eat by mouth. He is tolerating more "happy mouth" activities than he was allowing in the hospitals. And today he took several mini-bites of baby food. Jude usually gags throughout our feeding sessions and often throws up...but today he did not gag or throw up!


Please pray for Jude's eating. We worry a lot about his ability to eat and we are constantly trying to think of ways to help him find the desire to eat by mouth. Please pray for Jude's occupational therapist as she works with Jude to encourage him accept food and swallow it appropriately. We will continue to keep you updated on his progress.

Last week, we were trying out a few new things (that the GI doc suggested) to see if we could help Jude stop vomiting. Sadly, none of the new changes improved things. Things did not get better but they did not get worse! Here is a closer look:

- Jude is gaining weight despite the fact that he throws up 2 to 6 times a day. He is rounding out at nearly 19 pounds and he is in the 90th percentile for height!
- The increase to the volume of Jude's feeds did not seem to bother Jude at all. It was a very small increase but it was a step in the right direction.

- Jude remains on continuous feeds throughout the day. He is being fed through an ng tube 23 of 24 hours of the day.
- Jude begins throwing up around 2:30am or so each morning. Usually he gags or throws up several times for the next few hours. We aren't really sure why the mornings are so awful for his digestive system (and believe me, we've looked in to every possibility). Because of his throw up pattern Jude and  Brian and I are still not getting much sleep. Brian and I alternate nights staying in Jude's room. We are both still very tired and we'd love for Jude to get a full nights sleep without the discomfort of throwing up all morning.

Today we spoke with the GI doctor and she asked us to switch the type of formula we are using in hopes that it will slow down or stop Jude's throwing up. Please pray that this will be the answer. I don't feel convinced that the type of formula is impacting his vomiting...but like the doctors I am left scratching my head. Jude's little insides are such a mystery.

We continue to rejoice over the fact that Jude is now at home with us. I often find myself wanting to share the news of our miracle with total strangers. I simply cannot believe that we are on this side of Jude's CDH diagnosis.

Over the last few days I've begun to reflect over the journey of the last year.

You see, on July 27th 2011 we found out that Jude was a CDH baby.

Our life looks so different from our life one year ago. Not one thing looks the same.  I hope to share some of my thoughts with all of you on the 27th about how the Lord has moved in our lives over the last year.

I also hope to share some new pictures of Jude at home in the next few days. Right now I am typing from my mom's lap top, so I don't have any pictures available to post. I promise to try my hardest to share a few cute little man pictures with you soon!


  1. Glad to hear he is doing so well!

    When I was younger (probably 1st grade or so), I started throwing up around that time every single night for two or three YEARS. Then it stopped but I was still sick a lot and couldn't really gain weight! In 9th grade I started throwing up almost daily again, and was finally diagnosed with 3 ulcers (that had swollen my stomach shut by that point)... They finally explained that stomach acid production naturally peaks around 2am, which was likely why I always threw up just a short while later. Anyway, all that to say, I wonder if it's related to his acid reflux? Hope they figure it out soon, whatever it is, because I remember how much it sucks to start every day that way, especially for a little guy with so much else going on!

    You all amaze me :-) praying for Jude's tummy and that you guys get some sleep soon!

  2. So happy for improvements (and for not-improvements-but-not-worsening)! He is an amazing little guy!