Thursday, April 12, 2012

Snuggle time

First, I want to ask all of you to join us in praying for baby Lily.

Lily has been fighting her CDH battle for 10 days. I met Lily's mommy (Liz) back in January and knew that Lily would be delivered at MUSC. Over the last several days, we've watched Liz and Grady (Lily's daddy) love on their sweet girl every day and we've been praying for Lily as she has been on ECMO most of her life. Lily was placed on ECMO about a day and a half after she was born and today they tried their first trial off! The trial went well and they are going to try another trial tomorrow. If all goes well, Lily will be taken off of ECMO and on the road to her repair surgery on Tuesday. Please pray for Lily's trial off tomorrow and for Liz and Grady as they await the results of this trial. Please cover them in prayer this weekend and next week as they face the CDH challenges that Lily will fight. Pray for strength and health for Lily! According to her mother Lily is a feisty little lady! We will keep you posted as we can.

As for Jude, he had an ok today. He started out the day with two not so great blood gases, so the doctors and nurses worked to come up with a new plan to try to tackle the struggles that Jude is facing with his breathing, CO2 and ventilator settings. He just seems "stuck" since he was intubated on Wednesday of last week. In rounds this morning, it was decided that Jude would receive a visit from the pulmonologist to see if a new set of eyes could come up with some new ideas on how to help Jude's body get rid of the "junk" that just won't seem to leave his chest. Jude sounds so congested and "junky" in his chest and has sounded like this for far to long. We hope to learn about the pulmonologists thoughts tomorrow morning. It was also decided that Jude would start receiving a Lasix dose every day again (he was receiving them every other day) in hopes of helping his eliminate some of the extra fluids that he is retaining in his chest. Additionally, they decided to do CPT which is a treatment from a respiratory therapist in which they essentially beat on Jude's chest to help break up the congestion. And lastly, Jude is spending a little more time on his tummy each day because this gives Jude's lungs an opportunity to lay in a different position and hopefully open up a little more. Will you join us in praying that these measures will be helpful in recruiting Jude's right (good, big) lung? We'd love to see his ventilator settings go down instead of up. Our poor little boy is so weary from being so sick.

Now for some good news: Tonight Jude will be receiving enough breast milk to no longer require TPN for nutrition! We are thrilled that he is tolerating his TP feeds so well! As you may remember, Jude's surgeon was hopeful that Jude could tolerate TP feeds so that he could grow bigger and healthier for surgery in the future. Praise God!

If Jude can get to a healthier respiratory status then he will be able to grow and get stronger for a future and safer 2nd repair surgery. If Jude's respiratory status does not improve then surgery may come sooner...but will be at a much higher risk. We continue to remain hopeful and prayerful!

This afternoon I had the benefit of being a part of Jude's tummy are a few pictures of our snuggling!

Many thanks to Jude's nurse Lesley for snapping this pictures for me.
Such sweet moments.


  1. Dear Rose,
    You are so lovely to invite us to pray for Lily at the same time as your own sweet boy is struggling. I will be holding her in prayer along with Jude (and Esther... and others).

    I love the picture of Jude doing tummy time on his mama. Thank you for sharing that blessed moment with us.

    Samuel's mama

  2. Love the sweet photos and I am so glad to hear that he is off the TPN! I am praying that the congestion might subside allowing the vent settings to be lowered even more!!

  3. Praises for sweet snuggle time! We will add Lily to our prayer list. Thanks for the details! xoxo

  4. That is the best kind of tummy time, right there!! Praises for his feeds, and continued prayers for strength for you all!

  5. Prayers for Lily and Jude! I love the pictures. I remember when my son was little, I treasured all the time he napped on my chest. I'm so glad that you are getting to hold him.