Sunday, May 20, 2012

Changes

Since our last post, Jude has improved and appears to be feeling much better!

It appears that our little man's pain/discomfort as well as his fever (all referenced in the last post) probably was caused by cellulitis, a bacterial skin infection that appeared on the inside of his leg where he'd previously had a catheter. He's been treated with antibiotics in the intervening time, and the infection appears to have gotten better!

In other news, Jude's sedation (i.e. pain meds and sedative) have been weaned a little bit since our last post, his respiratory support on Vapotherm has been turned down a wee bit, and he's now at full feeds, which are being administered continuously and transpylorically (i.e. via a tube in his nose that's been advanced to the beginning of his small intestine). He's making gradual progress with his physical and occupational therapy, and speech therapy, which is primarily being consulted at the moment to help Jude work toward swallowing, is now beginning to see him as well.

Rose and I headed back to the upstate this past week to take care of some business, so her parents hung out with Jude while we were away.


Flanked by Papa Jack and Nana Beth.


Kickin' it with OT!


Hangin' with his sidekick, Super Bear!


Staring contest! You and me, now!


The staring contest continues.


All smiles, even in restraints.

So while Rose's folks were hangin' with our little man, she and I returned to Greenville to set some things in motion. It was an emotional trip, to say the least.

Before Jude's birth, Rose and I had hoped or anticipated that, if he survived, he would be in the hospital for 2-3 months, tops. Then, we thought we'd return to our home in the Greenville area and resume life there, with the hope that it would be some approximation to our life before Jude. But, just as with Jude's life and course of care up to this point, our plans and expectations have been significantly altered, and now we find ourselves on the cusp of doing something we certainly never expected: moving away. 

After much consideration, Rose and I have decided that the best thing for our family is to relocate to Florence, SC after Jude's discharge, where we'll live with her parents. To the end of preparing for such a life change, I tendered my resignation to my employer on Friday morning, and then Rose and I signed an agreement to put our house on the market that afternoon. We're tentatively planning to reside in Charleston until Jude is discharged from the hospital, then we'll relocate permanently to Florence. Our hearts are incredibly heavy as we consider leaving our church family and community in Greenville, but, for a variety of reasons, we think it will ultimately be the best thing for our family long-term. Please pray for us as we begin to make these big changes in our family's life.

Something must be noted before going any further:

It feels as if we cannot overstate our love, affection, and gratitude for our friends in Greenville, particularly our brothers and sisters in Christ there. Rose and I have both seen the ways in which God works through His body, but I don't think either one of us has formerly had such a felt sense of His love as expressed through others as we have during our time in Greenville. We praise God for affording us such amazing relationships with others while there, particularly through Downtown Presbyterian Church and MOPS of Simpsonville. I've also been blessed to have employment with the public library system in Greenville, and I won't soon forget the many kindnesses shown to me by my coworkers there.

Before we returned to Charleston yesterday evening, we had the opportunity to visit Junkin' for Jude, a yard sale to benefit Jude that was organized by a friend of ours from Greenville, Kristen Bray. Kristen and her husband, Jonathan, were kind enough to accept items donated to the sale and then actually host the sale at their home with the help of many volunteers. Rose and I were surprised, moved, and humbled that anyone would go to such lengths for Jude's benefit. It was amazing to see how God was working through the whole endeavor.

To Kristen, Jonathan, everyone who volunteered to help out with Junkin' for Jude, and everyone who was kind enough to make donations at the sale: Thank you so very much. Our hearts overflow with thanks to God for you and for this amazing outworking of His love and mercy.


In the next day or so, Rose and I will hopefully meet with the attending physician from the Pediatric Intensive Care Unit (PICU) in preparation for Jude's projected move to the PICU on Tuesday. We're excited about this move, but, naturally, we're a little anxious to see how it will go. We're also sad to leave the NNICU and its wonderful staff, but we look forward to future visits from Jude's NNICU doctors and nurses whenever they have opportunities to come see him. We'll post more about this impending move to the PICU as we get more information about what it'll mean for our little man.

Thank you all for your continued prayers for our son and our little family. Good night!

6 comments:

  1. Your family is in my prayers as you make these not so easy transitions. I'm so glad Jude is doing better :-)

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  2. Continued prayers for your family.. but can I say PRAISE God for all these great steps forward. LOVE these photos of Jude. Praying for everything to come together for you as you make this transition and I know that God will continue to provide as you trust him and continuing walking by faith.

    Love,
    Liz, mama to Finley, L-CDH Survivor and Rowan
    www.finleyanabelle.wordpress.com

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  3. I don't know your family but heard about you through a fb friend. I was captured by Jude's sweet face and have been praying for y'all the last several months. His story touches me. My first was born right around the same time as Jude and my we had some unforeseen circumstances with Harper. What a HUGE testimony y'all will have and more importantly, Jude! Prayers will continue. Praise God for his unending love! Go Jude!!

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  4. I'm so happy. Happy for Jude's improvement and happy for your news. I know that if I was you guys, that is exactly the choice I would make. I know you love the upstate and are sad to leave your friends and church family, but there is no better thing than family that loves you. I am thankful that you have the opportunity and a place to stay in Florence. I know you will be surrounded by people who love you. And I'm sure you will have plenty of places to stay when you want to visit up here. I want to be on that list (I am so serious! We owe you guys a dinner anyway!).
    I hope that sale of the house goes smoothly and I'll be praying for the transition all around.
    I love you guys!

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  5. I am so happy Jude is doing better...I can't even tell you how many times a day I pray for that precious little fellow. I know moving is hard...any kind of change is hard...but I know that God must be showing you his plan for you to feel so strongly about it. Without God's plan being set into motion - I don't think you would have been so apt to move so quickly. I'll pray for you with this transition. You guys are such a great family and I see everything working out beautifully. :) Love to all, Melissa

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  6. Lowse and Brian,

    My continued prayers and well wishes as you embark on this new twist in life's journey. Even though you're physically moving away from Greenville, it sounds like you can rest assured you will forever have friends you can count on there. I know it may not be the path you would have chosen, but I also know you are thankful every day that you are facing it together as a family - with Jude.

    I love you so very much and thank you for humbling me with your faith in Him. It moves me to know your love for God even/especially when time's are so tough.

    Much love,
    Sheri Edwards

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