One more night!

Hi friends,
I apologize for the lack of updates over the last several days. We only have one lap top and Brian needed it for his new job (PRAISES!) and first day of classes (HOORAY!).

As you can imagine, the last several days have been quite busy for our little family. Here is an update of what happened over the last few days:

- For a brief time the surgeons were hopeful that one of the radiologist would be able to place Jude's feeding tube (in his nose) down into his intestine (also known as TP) so that they could bypass his stomach and continue to feed him with formula. They were hoping that an especially skilled interventional radiologist would be willing to attempt placing the tube, however, that particular physician is out of town for 3 weeks. And sadly, none of the other radiologist were willing to attempt placement because Jude's stomach is in such a unique location. We were quite bummed that this did not work out. We'd really prefer that Jude could be fed with formula until his next repair surgery.

- So, because Jude needs to have good nutrition to help him grow and remain healthy before surgery it was decided that Jude would get a PICC line placed so that he could receive TPN (total parenteral nutrition/IV nutrition). On Wednesday, Jude received his PICC line and over the last two days he has been receiving all of his nutrition from TPN. TPN is not our top choice for our little man, but really this is the only way for him to continue to receive nourishment to help him grow.

- Since Wednesday the pharmacist has been implementing a plan that will allow for Jude to receive his TPN for 16 hours a day. The remaining hours of the day will be spent disconnected from his TPN. But working up to receiving TPN 16 hours a day is a process. Jude little body has to show that it is "okay" with receiving his nutrition over a compressed amount of time. Thus far he has passed every test with flying colors! Yay!

- If all goes well with Jude's little tests to determine if his body can handle the TPN 16 hours a day, then he will go home sometime tomorrow (Saturday)! We are thrilled that we can bring our little guy home. This hospital stay was very unexpected and lasted MUCH longer than anticipated.

But what about the new hole in his diaphragm, the re-herniation?

That is a tough one. Here are a few more bullets to explain the situation...

- Dr. Hebra (Jude's loved and amazing surgeon) is on vacation this week. He has been in contact with all of the doctors caring for Jude and is carefully considering the safest and best path for Jude's 3rd repair. There are several "ideas" on the table about what will be the best way to repair Jude's diaphragm and he is seriously wanting to make sure that Jude will not re-herniate again.

- Right now the goal is to give Jude good nutrition and help him grow bigger and stronger. For how long? We aren't sure, but we are planning on getting an answer to that question from Dr. Hebra when he returns. It could be next week...a few weeks...a month, we aren't really sure. But we want to be sure that it is the right and best time for Jude to face such an invasive surgery.

- Will this repair be different than the last two? Likely. There are a few options that are being considered. Jude's CDH and GI anatomy are so unique that his repair is not as straightforward as we would like. In fact, Dr. Smith (the attending surgeon that was covering this weekend) said that he, Dr. Hebra and the other surgeons were attending a conference in the coming weeks at which they hoped to present Jude's difficult and unique CDH repairs and re-herniation. This conference will be attended by many of the top US surgeons. Basically, our little man's insides are complicated. So complicated that our surgeons want to consult all the "big dogs" about the best way to help Jude. We found this both reassuring and scary.

So, how is Jude's life different now?
- Well, he has a PICC line in his chest at all times. He will no longer receive formula through an ng tube in his nose, instead he will receive TPN in his PICC line. It will be difficult for us to manage at first, but should be pretty straightforward after we've been doing it for several days. But the hope is that this will be a very short solution until surgery to repair his diaphragm. His PICC line has to be handled very carefully and we will need to be extra vigilant about preventing any infections. Please keep this in your prayers!

- He still has an ng tube in his nose (a much smaller one now). This ng tube will be used to give Jude two of the medications that he needs. Unlike his other medications these two medications cannot be given to him through his PICC line so they must be put into his stomach through an ng tube. Please be in prayer about this too. It is currently very difficult to place Jude's ng tube (and it's even harder to make sure that it is in the right place) because of the location of Jude's stomach (in his chest). Caring for his ng tube may be a very tedious task and may require us to visit our local hospital anytime the tube comes out or needs to be changed.

What will stay the same for Jude?
- Jude will be back at home until his next surgery. He will still receive all of his therapies and will continue to try to eat by mouth.
- He will continue to have several doctors appointments at MUSC and he will still be wearing his awesome blue helmet.
- He will be loved on just the same (if not more) by his big sister who has missed him a TON this week.
- He will continue to amaze us with all he can do despite the huge challenges he is facing!

Thank you for all your prayers and continued encouragement. Thank you to all of you who have cared for us while we've been in Charleston caring for Jude. It has been hard accepting that Jude and our family will be facing an even longer journey...but we are tremendously thankful that the Lord has blessed us again and again during this season of our lives.

Please keep praying...we will keep updating you on our sweet little man!

P.S. If you have a little extra time to pray...will you join us in praying that our house in Simpsonville will sell soon?

More than just an overnight stay?

It's beginning to sound like Jude may be in the hospital for a little while. We're not sure yet exactly how long he may be here, but we're pretty certain that it'll be more than just an overnight stay.

The latest tentative plan, which was reportedly approved by the attending pediatric surgeon that was consulted, is to suck out the contents of Jude's stomach and decompress it using a tube through his nose, then start him on IV nutrition.

One of the residents from the pediatric surgery team came by about two hours ago and advanced a gastric suction tube through his nose, then an x-ray was done to ensure that it's in his stomach. Jude's nurse actually just got the order to turn on the vacuum/suction a few minutes ago. Sometime later today, Jude will get a PICC (peripherally inserted central catheter) and it will be used to begin delivering his IV nutrition. The surgery resident that placed the gastric suction tube mentioned it's possible that Jude could get a BROVIAC catheter, a kind of long-term catheter that Jude had for several months during his previous hospital stay, but that's not yet certain. We'll post more updates about the plan as we learn more.

For now, if you would, please continue to lift up Jude as well as his doctors and nurses in prayer. More specifically, please pray with us for Jude's comfort, that his respiratory and nutritional statuses won't worsen, that a clear plan of care will come into view as we move forward, and that God might move in miraculous ways in the midst of this situation.

Please remember us and our families in prayer, too. We're beginning to process the *possibility* of a longer hospital stay, but after so many months of trials and difficulty, the thought of it is a little hard to bear. This is apparently what God intends for all of us right now, but we're also asking, How long? May He give us grace and mercy to sustain us through whatever lies ahead.

Back in the hospital.....but temporarily, we hope.

Hey, folks -- it's Brian. It's been a long and somewhat eventful day, but here's a quick update:

The big news is that Jude has been readmitted to MUSC Children's Hospital. His doctors feel that his increased vomiting / feeding intolerance warrants attention and that he may need a feeding tube advanced into his small intestine or maybe even IV nutrition to alleviate his symptoms.

The short-term plan for Jude's care is a little unclear at the moment, as his surgeon is out of town and the pediatric surgery team that's in the hospital is deliberating about what should be done right now. We'll keep you all informed as we learn more.

If you would, please pray for Jude and for the staff taking care of him. Jude's problems are a little thorny because of his complicated medical history, so please pray that God would provide a clear way forward as the doctors and nurses here care for him and articulate a plan.

Also, please pray for us and our families as we figure out the logistics of another hospital stay.

Thank you all for checking on us and praying for us. We'll keep you posted.

Back home!

Hi friends,
I apologize for the lack of posts since my update about Jude's re-herniation. We've just been trying to adjust to the fact that Jude will be facing another surgery. Overall Jude remains pretty happy and is acting mostly like himself.

However, over the last few days the number of times that Jude has thrown up and the actual volume of his vomits have both increased. For awhile Jude was only throwing up 2 to 4 times a day...but over the last two weeks the number of vomits have been slowly creeping up. Earlier this week he was averaging around 6 or 7 vomits...then there were 9 yesterday and today we hit a total of 11.

Not fun at all for our little guy.

On top of that, he seemed to be working a little bit harder to breathe. Nothing terribly alarming but we did not want to push him too hard. 

This afternoon we paged the GI doc on call and the surgeon on call at MUSC to update them on Jude's status and get their opinions on what we should do for our little guy. Their greatest concerns were for Jude's breathing and they wanted to make sure that he was not dehydrated because of all the vomiting.

So, we got our little guy ready (and called our local pediatrician) and went to our local ER. We were taken back immediately and Jude was assessed. He was hooked up to a monitor and  his oxygen saturation good. They did some blood work and got an IV in for some fluids. After 30 minutes or so Jude perked up and seemed to be feeling much better. His blood work came back and all looked good there too!

The ER doctor checked in with Jude's surgeon at MUSC and our local pediatrician and then gave us the "okay" to take our little guy home for the night. We were advised (of course) to continue to keep an eye on him and come back/call if anything else concerned us.

Praise God! We are so thankful to have our little boy sleeping in his own little crib tonight.

Why is Jude throwing up more?
We think that it is because his stomach is back in his chest. But I'm thinking that we will have a few more answers this coming week. On Monday Jude is having an upper GI to get a better look at exactly how much of his insides are in the wrong place. And then his GI doc and surgeon will take a look at those pictures to determine what to do next.

How soon will his next surgery be?
Again, we are not sure yet. But the hope is (much like last time) that we can put off surgery at long as possible so that Jude can get bigger and stronger. The healthier he is the easier it will be for him to recover from his third repair surgery.
But, if Jude's GI troubles continue to increase or if he begins to have respiratory trouble it is likely that his surgery will happen sooner rather than later.

So, for now...we wait. And pray for a happy Jude for as long as possible.

We are so thankful for all the prayers and support during this new part of Jude's journey. Please keep praying!

Not a good day.

Hi friends,

This blog will be brief because we are really, really tired.

Today's MUSC visit did not go well.

Over the past two weeks or so Brian and I have been suspicious that something was amiss with Jude's GI system...but nothing seemed especially urgent with his symptoms. So, we held on to our concerns until this morning's visit. After sharing our recent observations with Jude's GI doc (who is very responsive to our instincts as parents), she decided that it would be best for Jude to have an x-ray of his abdomen this afternoon.

So, the x-ray was done and it was discovered that Jude has re-herniated for a second time.

Yes. Jude's repair has broken. Again.

Honestly, I'm struggling to find the words to explain how we are feeling right now. We are just sad that Jude will have to endure yet another surgery and another major setback. Our hearts are broken for him.

I hope to find a little more time to blog tomorrow to share more details about the plan for Jude now that he will be facing another surgery. Forgive me for not being up to it tonight.

I can tell you that Jude is home with us tonight. He does not need to be hospitalized at this point. From a medical standpoint he's stable overall.

Once again we covet your prayers. Please lift Jude up. Pray for his little body. Please lift our family up, we are so weary.

Much love,
Rose

This Year

Happy Sunday, friends!

I hope you will forgive me (us) for taking so long to write the blog we promised. It’s tough to find time to sit down and share my thoughts…plus, it seems that anytime I sit down I just want to fall asleep! 

But tonight I am ready! I’ve have a full cup of Mountain Dew and I’m in this for the long haul! 

In all seriousness, I hope that I can adequately convey my thoughts about the last year with all of you this evening. I’ve been mulling over my thoughts for quite some time and I feel like there are so many things that I want to tell you about. I fear that I will fail in telling you just how life changing this year has been. Well, I guess you know that it has been life changing but it truly blows me away just how different our lives look on August 5, 2012 compared to July 27, 2011. 

If you’ve not been reading our story over the last year and you want to start at the beginning (or at least read the first blog of our journey) you can start HERE.

This blog is written from my (Rose’s) perspective. Brian is hoping to write his blog post soon. My hope is to share my personal journey. I don’t want to offend or upset anyone. I know that some of this content may be extremely upsetting but I also want to share my real life experience of this last year. You may learn more about me than you want to know, but you’ve all been such a big part of Jude’s journey and ours over the last year and I feel it is important to share with you what God’s been doing.

__________

Last year, after our 20 week ultrasound my heart was broken. Honestly, I was terrified. I was so worried that the Lord had chosen me as a mother who would lose her sweet baby. Having a sick baby was not on my radar at all. Having a sick baby that had a 50/50 chance of surviving wasn’t something that I’d even considered in my future. Of course, who expects that? 

After our 20 week ultrasound, the doctor walked into the exam room and flipped open my chart and immediately my eyes fell upon a full page of pictures of our son. I knew that something was dangerously wrong. And then our world spun completely out of control. Even though I felt desperate, broken and ripped from normal life I knew that the Lord was with me. And I knew he would be with Jude too. 

But through all the pain we were passionately loved on by our church and friends. I hardly ever cooked during the months leading up to Jude’s birth. Ladies I did not know were bringing meals to keep me off my feet and feed my family. My dearest friends would drop by to pray with me or give me a hug. My closest friends pulled me in even closer and helped me continue life. I needed so much support and the Lord truly provided that for me in ways that I cannot express. 

The days and weeks after July 27^th feel like a blur for me. I cried a lot. I begged the Lord to choose a different path for my son. For me and Brian. And for my sweet daughter. I knew that this was going to shake me and change the world I knew…but even what I expected the changes would look like are nothing like what I anticipated. You see, I am a planner. And I think I was even trying to plan what this horrible journey would look like. 

Here is a snapshot of what was in my head:

a) My sweet son would die soon after his birth. We would grieve. Our hearts would never be the same. He would be buried on the family farm (we have a family burial plot) and I would have an extremely difficult time deciding if I wanted to visit the farm or not. I would want to be where he was buried but being on the farm would also be a great source of pain for me.

b) Jude would survive his CDH battle and we would bring him home to Simpsonville in a few months. Jude would struggle to gain weight but he would be eating by bottle or breast some of the time. He could have a g-tube and might need oxygen. It would be hard, but Jude would be alive. We would have the love and support of our friends and our families would visit often to help us.

_________

But as you know, neither of my plans came to pass. 

Jude did not die.  But he nearly did. 

Many times. 

PRAISE my almighty LORD for this blessing!

But Jude did not come home in Simpsonville in a matter of months either. It took him nearly 6.5 months to leave the hospital. And we are now living with my parents on the family farm (where we thought we would burry him!) and we need family support/help daily.  He is still not eating by mouth. A G-tube is pretty much off the table. And our boy’s lungs were strong enough to head home without O2. 

Oh, how the Lord changes our plans! 

But let me be honest here. I am still struggling with being here. (Isn’t that terrible?) I am over and abundantly thankful that Jude is alive and thriving! But I am heartbroken that I am not at home in Simpsonville. I feel heartache like one feels after a break-up. I miss my friends. I miss our church. I miss my house. I miss my dogs. I miss the life that we had before the mess that CDH made. 

But I also know that Jesus never, ever left us during this journey. This journey hurt more than I thought it would. It turned my life upside down. But the Lord knew what He was doing. I am certain of that. 

Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding. – Proverbs 3:5 AMP

There are days where I want nothing more than to run right back to the life that I knew before July 27^th, 2011. But I also know that I would not take back the sweetness and closeness of the Lord’s love that I felt over the last year. I felt the Lord with me always. Even when I wanted to scream and shake my first at Him, he continued to LOVE me and carry me. As I mentioned in previous blog posts: every day I asked the Lord to give me just what I needed for that day. I learned that just what I needed for each day was Him alone. 

And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ. – Ephesians 3:17-18

Now that we are on this side of our journey I can say with certainty that we are just where the Lord wants us to be. We’ve seen so many confirmations that this is just where He wants us. And as cliché as it sounds, I’ve felt that the Lord made the “big picture” clearer to me over the last year. And I pray that I am always able to recall just how desperately He loves us. I know even more that this world is a broken place…full of sin and hurt. But that is not the end of the story. I know the end. The end with Jesus is healing. It is love and joy. There is no pain. Only a deep and certain peace. Because we are with the most holy God. Oh, how I long for that place that we will call home…our real home is with Jesus. 

But I trust in your unfailing love; my heart rejoices in your salvation. – Psalm 13:5

There are so many things that I wanted to share with all of you in this post. But I am hoping that the Lord will provide ways for me to share with you about the real pain we experienced AND the healing from His beautiful love over the last year. I may have the opportunity to share more stories on this blog or maybe the Lord will provide a way through face to face meeting. 

Lastly, I wanted to share some lyrics to a song (there are many in this journey) that greatly impacted me during this journey. A week or so after Jude’s diagnosis we sang this song at our church and I wept throughout the song. It struck me to the center of my heart. I felt so scared. So moved. So desperate for the Lord’s comfort and love. The last verse was particularly important to me during this journey.

Soon after Jude had reherniated and I was once again fearful that we would lose him again the Lord sent this song to speak to me. While we were in Charleston we hardly ever had the chance to go to church but one Sunday we visited Lighthouse Church in Mt. Pleasant and we sang this song. 

I share it with you now and hope that it will move you as well. We love you all. Thank you for weathering this journey with us. The Lord has richly blessed us through your love, support and prayers. 

In Christ Alone

In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

In Christ alone! who took on flesh
Fullness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied -
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,
For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I'll stand.

Helmet and mustache

 Showing off his helmet...notice we are having a little more luck with the taping of his ng tube!

Jude and his big sister. Annabelle and I had a little fun that day drawing a mustache on Jude's sweet little face.

What is Jude up to?
- Still trying to eat by mouth...he is handling a little bit more every day
- Learning to sit up and steady himself
- Throwing up much less due to a change in his formula and an increase in some of his reflux medication
- Playing, enjoying and smiling at his big sister
- Venturing outside on the farm to enjoy a little sunshine, the doggies and the dirt

What can you pray for?
- Continued progress with Jude's GI issues. Pray for even less throwing up and for the ability to compress his feeds even more. (He is still currently fed 23 of 24 hours a day) We will take Jude to see his awesome GI doctor on Wednesday and we are hoping for some new changes.
- We still want our little guy to eat by mouth. We think he will like it once he gets it...and we want to get rid of this blasted ng tube!!!

There is another post coming up...stay tuned!