Tuesday, January 24, 2012

50 days old and a little step back

Hi friends,

Jude is 50 days old!!

Thank you for continuing to follow our blog...and thank you for being patient and waiting for an update on Jude.

Since our last post on Saturday things have been pretty steady for Jude. The doctors continued to up his feeds and wean his medications little by little. But today things changed a bit for Jude. Here are a few things that happened today:

  • The doctors decided to back down on Jude's feeds today by half because he was having several watery stools. Because they were unsure about what might be causing Jude to have watery stools they ran a test to see what was going on. The test results revealed that Jude is suffering from mal-absorption, meaning that he is not absorbing the nutrition from the breast milk like he should. So, they decided to slow his feeds a little bit to allow his bowels to "wake up" a little more and hopefully they will begin to absorb a little more after more time passes. We were a little bummed by this news because he was "trucking" along with his feeding. But we were also told that there would be days when Jude would take two steps forward and one step back...and today was one of those days for his digestive system. Will you lift him up in prayer in this area? We'd truly appreciate it. And please say a prayer of thanksgiving for the fact that things are still moving through his system, despite the fact that it is not being absorbed as much as it should. 
  • One of the results of Jude being weaned from his meds and "waking up" a bit more is that he is more aware of the things being done to him. Over the last two days Jude's gag reflex seems to be much more apparent and he has vomited a few times as a result of oral stimulation with a paci. Jude gagged today while the occupational therapist worked with him and at the end of her session she explained to me that we should slow down on his oral stimulation because his oral aversion appears stronger now that he is becoming more aware and less sedated because of the medication wean. Will you join us in praying that Jude will adjust and accept oral stimulation a little more over the next few days? We'd love for him to move closer to larger feeds but we know that he must go at his own pace.
  • Also today Jude seemed to be working harder to breathe and it concerned me quite a bit. My mommy radar was going off so I asked our nurse (Meghan, another one of our favs) to check him out and she also had the respiratory therapist and one of the doctors check him out. After evaluating him they did a chest x-ray, went up a little on his CPAP settings and took a blood gas to see how he was doing. The x-ray actually looked much better than it had in recent days (yay!) and his CO2 was up a little with his blood gas. First they wondered if he was struggling due to weaning his medication and if his symptoms were from withdrawals so they gave him a little extra medication to help him calm down. Then they tried switching him back to a nasal cannula for the CPAP that he was been wearing since he first went on. (he got a new tighter fitting one last night) And the switching out of the nasal cannula seemed to solve Jude's labored breathing problems. I asked Meghan why the old cannula might work better and she explained that it is likely that the old cannulas deliver better pressures for Jude's needs. So this afternoon he was back to resting comfortably. Whew. They were even able to wean his CPAP settings back after the switch! Will you pray that Jude continues to remain comfortable on the old cannula and that he will continue to improve from a respiratory standpoint?
  • I've been able to hold Jude much more lately and I am loving every moment of it. I am even beginning to figure out Jude's little ques so that I can understand what his needs are. I love knowing what comforts him and I love being able to comfort him. Brian also held Jude quite a bit this weekend and my mom will hopefully hold him for the first time tomorrow! Praise the Lord for all this wonderful holding! 
Well, that is the update for now. I will be back with my little man tomorrow morning and hoping that he has a better day. Please join me in praying for a really good day for Jude!

- I also wanted to mention that I was hoping to do a blog post that allows for me to answer some of the questions you have about Jude, CDH, his hospital stay, our family, etc. I've already received a few questions that I hope to answer but if you have any that you'd like to ask send me an email and I will try to answer them for you.  just.enough.for.the.journey@gmail.com

    Praise the LORD, all nations!
        Extol him, all peoples!
    For great is his steadfast love toward us,
        and the faithfulness of the LORD endures forever.
    Praise the LORD!
(Psalm 117 ESV)


  1. Praying Jude has a great day tomorrow!

  2. Yes, a little flag went up today with Jude, but I am hoping this is just part of the process of weaning him off his meds. Rose, my mom had some of these symptoms while she was being weaned off morphine so it could even be related to some of that too. It is all such a balancing process and I am just so thankful Jude is still moving forward. It truly is a matter of not looking at the smaller picture but over several days at a time. I will continue to pray for Jude and his receptivity to the weaning process. It is such a joy to know you are getting to hold him (so good for healing) and tell your mom I send my love to her!

  3. Thank you for sharing! We're 23 days in, so it's awesome to have a glimpse into a crystal ball. You truly are an inspiration! Give kisses to Jude from us!

  4. Check out this blog: http://www.kellyskornerblog.com/ She posted today asking prayer for Jude and she lives in Arkansas!

  5. new follower over from Kelly's Korner. I'll be praying!