Friday, August 31, 2012

He is home again...and it took me three days to let you all know!

First off, let me say...

Jude is home!!!!

I apologize for not formally announcing it on the blog sooner. As soon as we got word from the doctors that we could take our little guy home I had the car packed. We we ready to break out of that hospital as soon as possible!

We love the folks at MUSC, but man, we'd already spent more than 200 days there.

So, I want to rewind a little bit...remember this little guy?
Cute...but not so happy. This is the way that Jude had to sleep each night before his recent surgery. Jude LOVED to try to pull his ng tube out and this was the only way to keep that blasted tube in his nose. The sweet little guy slept like this every night. I know he was miserable.
What is funny is that we took this picture to show to one of Jude's doctors to advocate for a g-tube. We had no idea that later that day we would find out that Jude had re-herniated and that Jude would begin his hard (but worth it) journey towards a g-tube (and Nissen).

So, here are a few photos of Jude's journey in the hospital (did not have the ability to upload them during Jude's stay):
Reading books to pass the time
Pre-surgery with Mommy
Pre-surgery with Daddy

Post surgery - we really did not want to see this again. But he pulled through SO QUICKLY!
My smiling boy just days after surgery!!!!

I also want to share this picture (or list) with all of you:
This is a schedule for all the medications that Jude took before surgery. After surgery and this last hospital stay he is only taking one medication, iron and infant vitamins! How incredible is that?!?! Praise God!

The last three days have been filled with balancing life with two kiddos. I'm feeding Jude every four hours (through his g-tube, over a 1 hour period). I'm also working with him on oral feeds least three times a day I try to get him to eat a little baby food with his formula. He is taking more food by mouth than ever before. (We still have a long way to go) We are amazed by the progress he has made. And we are pumped about him starting up his therapies next week.

I hope to update again later this week and share some recent pictures of our little guy at home. The difference in Jude's demeanor is HUGE. He just plain feels better. Praise God for providing a way to Jude to feel like a normal little baby.

God bless you all...keep praying! 

Tuesday, August 28, 2012


Guess what folks? 

It is looking like Jude will go home tomorrow! Yippeee!!!!

We are so excited that Jude is doing so well!

They started attempting bolus feeds with Jude yesterday and get this...he is up to full feeds today and handling them beautifully! No more TPN! He is currently receiving 150ccs of formula over 30 minutes every three hours. Dang man, those are like real baby feeds! I never thought that Jude would be able to eat like this...but he is! Bye bye continuous feeds! Praise God for providing a way for Jude to have a g-tube and Nissen! We firmly believe that the conbination of the two has made all the difference for Jude's little digestive system. 

He has not thrown up (it is quite hard to with a Nissen) since surgery and his little tummy is moving formula through just as it should. How can this be?!?! I am still dancing from the good news!

In other wonderful news: Do you remember the scary beast called pulmonary hypertension from months ago?

Gone. Yep, totally resolved. 

Jude got a follow up echocardiogram a few days ago and I got word this morning that his pulmonary hypertension is totally resolved. Yahoooooo! And that medicine he was taking three times a day to combat it? Gone. No longer needed.

The Lord is good!

I guess you can tell this mommy is a little spunky. That's right, my boy is kicking butt and taking names! 

In the last few days Jude has become tube free (no more ng tube in his nose) and he no longer has to wear the little elbow guards that keep him from touching his face. Yup. And he can sleep totally hands free too. No more baby in a sack. Just a little wiggle worm trying to figure out what to do with all this freedom.

Well, I have a little more to share with you but I will save that for our next post. There is some major flooding in Charleston today and I want to beat the next rainstorm out of the hospital for a few errands. 

Keep praying and praising with us!

Monday, August 27, 2012

Here is the scoop!

Hi friends,

Jude's mommy here!

I'm hanging out with Jude in his hospital room while he takes a hearty nap. He finished up some great time with his lovely OT (Katy) an hour or so ago and therefore he is quite tired. I've got a great picture of Jude sitting on a little stool during OT that I want to share with all of you but I don't have the cord to upload my pictures. I promise to share them as soon as I can.

So, here's the scoop:
(I know that is what you are waiting for!)

- Jude is healing well and is only needing the occasional PRN dose of pain medication. We are super pleased (and so are the surgeons) with how well he is recovering.

- Last night the surgeons decided to start feeding Jude pedalite through his G-tube. They gave him a very small amount in hopes of "waking up" his little digestive system. This afternoon they will begin feeding him formula (a very small amount) through his G-tube. They will give him 15cc over 30 minutes and then check in 3 hours to see how much of the forumla moved through and was digested. This process is called checking for a residual. Please join us in praying that Jude's little stomach is up for the challenge. If the feeding goes well they will eventually increase the amount of volume that they will give Jude through his G-tube.

- Currently Jude is receiving nutrition via TPN (as explained in a previous blog post) and we would love for him to no longer require this menthod of nutrition. We'd love to go home receiving all nutriton from formula and then begin working on feeding by mouth with our sweet OT at home (Elecia). Please pray that he can go home without TPN.

- Physically Jude seems to have bounced back pretty well! He is experiencing a little bit of weakness and pain around the incision site but we feel certain that he wil quickly bounce back to his busy ways and work hard with his awesome PT (Shannon) in Florence. Since he has been in the hospital he is even showing interest in getting on all fours....maybe crawling is in our future?!?!

- My favorite part of all this awful hospital stuff? Jude hasn't thrown up AT ALL since surgery. Not once. Praise God for a successful Nissen and G-tube! This morning Jude is completely free of tubes in his nose/throat and he is no longer having to wear the elbow imobalizers to stop him from pulling the tubes out of his nose. He is just so dang handsome and cute!

- Please pray that we will get to take our little guy home soon! As much as we love the folks at MUSC we are ready to get out of here. We've spent far too much of 2012 in Charleston. We are hoping for an end of the week discharge...maybe by the weekend?

Please keep praying for healing and progress. I am amazed that we are on this side of his surgery. What a joy to know that he came through this even better than before!

Please continue to pray for our sweet daugther as she misses Brian and I. We are currently taking turns in Charleston and Florence to be with each child.

Please pray for Brian and I. We miss each other so much. I can't wait to be with him everyday again.

Please continue to pray for our house to would be wonderful to have one less thing to worry about. (And one less bill to pay)

Please pray for the family and friends who are taking care of us during this journey. It has been a long road and they are weary too!

God bless you all. Thank you for your faithfulness!

Saturday, August 25, 2012

Real quick

Jude is doing well! We apologize that it has been awhile since an update. He no longer requires O2 anymore and he is healing slowly and surely! Hoping that they will start feeding him through his gtube for the first time tomorrow! Plans are to post a more detailed post tomorrow! Thank you for praying!

Thursday, August 23, 2012

Extubation, or, I can breathe on my own, thank you very much. :)

Jude was just extubated! (That is to say, he was taken off his ventilator and his breathing tube was taken out.) We're super excited that he was able to get off the ventilator so quickly! He's still going to be on nasal cannulas for a little while, which will give him a little bit of extra oxygen than he would get from breathing room air, but extubation the day after surgery suggests that his lungs are in really great shape!

We'll try to post more information a little later today. Thanks for continuing to follow Jude's progress and pray for him! We're continuing to pray for a speedy recovery from surgery and that his body will, even now, begin to prepare for resuming other activities, such as feeding and digestion.

Wednesday, August 22, 2012

The Toughest Little Man

Our little man pulled through! Surgery is over, and everything went very well! God is good!

All three parts of Jude's surgery came off without any major problems, and he's been moved up to the pediatric intensive care unit (PICU) to begin his recovery. (He did lose some blood in the surgery, but it wasn't an excessive amount, so the team in the OR was able to bump him back up to appropriate levels with some extra blood and fluids that were made available for him.) He's still on a ventilator, but he may lose the breathing tube within the next few days. For now, he's on some drugs to manage his pain and keep him asleep until tomorrow.

Thank you all for your prayers for a successful surgery! We are very thankful that the Lord brought Jude through this challenge! Now we pray that He will likewise provide for a swift recovery for our little tough guy. :)

Update: Hernia Repair Is Going Well!

I just got a call from one of the OR nurses with a surgery update: Everything is going well! Dr. Hebra is reportedly nearing the end of the hernia repair procedure, and he's been able to accomplish everything through an abdominal incision; therefore, he won't need to cut open Jude's chest to attempt a dual approach. That's great news! Also, since the OR nurse made no mention of it during our conversation, it sounds like there was no need to remove Jude's spleen. Praise God!

Once Dr. Hebra has completed the hernia repair, the next part of the surgery will involve placement of a G-tube. Provided the G-tube procedure goes well, the final part of the surgery will be the Nissen anti-reflux procedure, which will involve the use of stitches to wrap the upper part of Jude's stomach around the end of his esophagus.

We are really encouraged and thankful for the good news we've received so far! Please continue to pray with us that the rest of the surgery goes well! More to come!

Surgery Has Begun!

Jude's status on the tracking board in the waiting room has changed, and his surgery is now in progress! We don't know exactly how long the procedure will take, but we're estimating that it will probably take at least several hours. Jude's surgeon deferred on giving us any projected time frame, but another member of the team that'll be in the OR said the surgery would be "long."

Please continue to pray with us that the Lord would carry Jude safely through the surgery. We will pass along any updates that we receive from the staff in the operating room. Thank you for your thoughts and prayers!

Update: One of the OR nurses just called, and as of 15 minutes into the surgery, everything is going well. She'll be calling us again in approximately 90 minutes to give us another update. Stay tuned!

Surgery to Begin Much Later Than Expected

Hi, folks!

So Jude's surgery was scheduled to begin at 1 pm, but the surgical case before his took much longer than expected, so he didn't even leave the surgery holding area until 3:45. As yet, we don't think that the surgery has actually begun, but we expect to get an update very soon.

We'll keep you posted!

Tuesday, August 21, 2012

Details on Tomorrow's Surgery

So here are a few additional details about tomorrow's surgery that weren't included in the last post:

  • The surgery is scheduled to start at 1 pm. We don't know how long the surgery will be, as that will be largely dependent on exactly what Jude's surgeon finds after he's begun. The plan is to move our little man's organs back into their proper places, close the defect (i.e. the hole in Jude's diaphragm) with a patch, do an anti-reflux procedure called a Nissen fundoplication, and place a gastrostomy feeding tube (G-tube).
  • The defect is believed to be smaller than the past two hernias. Today, Rose had a conversation with Jude's surgeon, Dr. Hebra. After he reminded her that Jude has very little natural diaphragmatic tissue, he went on to say that, in this case, he believes the hole that has allowed Jude's stomach to move into his chest is actually somewhat small. Generally speaking, this is good news.
    The belief is that part of the GORE-TEX patch, which was used to close the hole in Jude's diaphragm during his last hernia repair operation, has partially pulled away from the posterior side of Jude's chest / thoracic cavity. X-rays taken over the past two weeks appear to show increasing amounts of Jude's stomach in his chest. First, part of the stomach was up. Then, a majority of it was up. And now, all of it appears to be in the chest. But while Jude's stomach is up, all of his other abdominal organs are clearly still down -- that is, except for one.
  • We're not exactly sure where Jude's spleen is located. This might seem a strange thing to say, but all it means is that his spleen hasn't been clearly visualized on the imaging tests that have been done recently. This fact could ultimately be insignificant, but Dr. Hebra expressed a possible concern about it when talking to Rose today.

    There are some blood vessels that run between the stomach and the spleen, and it would reportedly be very hard to stop the bleeding from these vessels if they were damaged. If Jude's spleen is still below his diaphragm, then it could potentially present a challenge to move Jude's stomach back down through his defect without damaging the vessels connected to the two organs. If Dr. Hebra can't move the stomach down without damaging these vessels, or if he thinks that it would be too risky to try, then it's probable he would try moving the stomach via incisions in both the abdomen and the chest. (The present game plan involves surgery through the abdomen only.)

    If the worst were to happen and Jude started bleeding profusely from the vessels in question, then Dr. Hebra may be forced to remove Jude's spleen completely. Pray with us that this won't be necessary!
  • Jude may recover from his surgery in a little more than a week. Rose and I were a little surprised at this, particularly since Jude took so long to recover after his previous hernia repair surgeries. However, we were reminded that his recovery period is expected to be shorter because he's bigger and stronger than he was before. We know that anything can happen (and with Jude, it usually does), but the prospect of a quick recovery and subsequent discharge? Yeah, we're cool with that. :)
I think that's all the news for now, folks.

Thank you for following the story of Jude and our family. It's been a tough year since we learned about his diagnosis and a tough 8 months since his birth -- time fraught with fear and anxiety, but also many blessings and great joy.

If you feel led to do so tonight or tomorrow, please pray with us that Jude's surgery will be successful and that the Lord would show favor to him and everyone who has a part to play in his healing. Please feel free to share Jude's story and/or our request for prayer if you are inclined to do so.

Third Hernia Repair Surgery Tomorrow!

Sorry that we haven't posted an update in a few days, folks. Things have been a little busy!

So yesterday morning, we found out that Dr. Hebra, the surgeon who performed Jude's two previous hernia repair surgeries, wants to do his third hernia repair operation tomorrow (Wednesday) afternoon. In addition to addressing the recurrence of Jude's hernia, our understanding is that Dr. Hebra will also do an anti-reflux procedure called a Nissen fundoplication and place a gastrostomy feeding tube (G-tube), which goes directly into the stomach. More details about the surgery and the specific time are forthcoming, but this is what we know at the moment.

As always, we covet your prayers for Jude's health and for the wisdom and skill of the medical staff caring for him. God is good, and we know he'll carry us through this next trial.

Thanks, friends. We'll keep you posted!

Saturday, August 18, 2012

And the Road Goes On...

Hi, friends. So here's the update:

Jude is staying in the hospital, and we've been moved to another unit. (For those who are interested to know, we've been moved from 7A, the Infant Care Unit, to 7C, the Intermediate Care Unit / PICU stepdown unit.)

So, Jude's hernia repair operation has been tentatively scheduled for Monday afternoon; however, the attending surgeon who's in the hospital right now indicated that the surgery could be postponed if Jude fares well for the rest of the weekend and all of his lab tests and other indicators look good. (When surgery does finally happen, we've been told it's likely that Jude will have a hernia repair operation, an anti-reflux procedure called a Nissen fundoplication, and a g-tube placement.) Also, his gastric suction tube is currently removing the bloody contents that he was vomiting this morning and decompressing his stomach. For the rest of the weekend, the medical staff will be watching him pretty closely and doing blood tests on a more regular basis to monitor his status. Update: The attending surgeon, Dr. Smith, informed us at 8 pm that Jude's labs looked very good, which may portend delyaing surgery until later in the week.

So, you may be wondering why Jude was vomiting old blood in the first place. Unfortunately, we're not really sure why. There's speculation that having several tubes put down Jude's nose over the last day or two irritated his nose and/or stomach lining and made them bleed. That's certainly possible, I guess, but Rose and I are little unsure about it. We've seen trace amounts of blood in Jude's vomit before, which was also attributed to tubes irritating the nose and/or stomach; however, what came out of Jude this morning was far more than we had ever seen before, and about 75% of it was blood (including some larger clots) with the rest being mucous and secretions.

When talking to the attending surgeon, he seemed more concerned about the possibility that the Jude's stomach was at risk for ischemia, or an insufficient supply of blood. If Jude's stomach were to become pinched or squeezed in his hernia (i.e. between his chest wall and what remains of the patch that was used to close his hernia), then blood supply could be cut off to part of his stomach, which could be potentially disastrous and result in the death of some of his stomach tissue. But, while the surgeon was concerned about ischemia, it doesn't appear that has happened. *Whew*

As you can imagine, we still covet your prayers for Jude's healing and for the wisdom for his nurses and physicians. But we also ask for prayer for our family:

We are very tired. Our lives have been turned completely upside down over the last year, and we need an extra dose of God's grace to keep going. Rose and I hate to be apart from Annabelle, and we hate it that she feels our absence and is saddened over it. (Yes, kids are resilient. And yes, she probably won't remember the troubles of this last year when she's older. But no parents want to be separated from their child intermittently for 8-9 months in the midst of very stressful circumstances or see her affected by a barrage of changes.) I've just started taking classes at a community college in Florence, and I'm slotted to start a new job on Monday (i.e. the same day that Jude's surgery could happen), so I have to go back soon, leaving Rose by herself with Jude.

We're very stretched, and we need patience and endurance that only God can provide. We can try (and have tried, occasionally) to muster those things out of our meager resources as broken, sinful people, but our only real hope for peace is on our knees. We can try to reassure ourselves that "everything will work out" just like we want, but we know all too well that God's timing and purposes rarely accord with ours, and that He may very well ordain a future for our family that, on the front end, would seem like the opposite of what we desire.

God, please give us grateful hearts to praise you for your many mercies to us over the last year: The love, encouragement, and prayers of family, friends old and new, and brothers and sisters in Christ the world over; material blessings that helped us get by when our resources would have been utterly exhausted; physical, emotional, and spiritual endurance that did not originate in us; and, most of all, for the grace and love of our Lord Jesus Christ, whose life, death, and resurrection are the foundation of our life and hope. We know that you have wrought healing in Jude's body, you have brought amazing people into our lives, and you have provided for all of our needs, but too often we use those blessings as the means to forget you. Forgive us for putting our trust and hope in things other than you -- living in this place or that, having immediate fellowship with those particular people, having this or that job, having these plans work out. Disabuse us of these idols and the ones in our lives that we don't even recognize. Please give us our daily provision to subsist as we continue to go through this difficult period of life, which feels like walking through the wilderness. Help us to remember our spiritual, mental, and emotional poverty and how, despite our wanderings, you have still given us every good thing to continue through this long walk with Jude. Help us to remember who we truly are -- broken people who need your love -- and who you are -- a merciful God who loves to bless his children, even when they use his blessings as occasions to forget him or walk away.

A New Problem, Another Day in the Hospital


If you would, please pray for Jude today.

This morning, he started vomiting, even though he's not being fed in his tummy. At first, we thought that the feeding tube in his nose, which is used to administer a medication that can only be given orally, might have been stimulating his gag reflex and causing him to throw up. Unfortunately, the vomiting didn't stop, and then blood starting coming up. The blood was apparently old as it was a dark brown color instead of the bright red color of fresh blood. We called Jude's nurse and the docs, and they resolved to watch him and keep him until tomorrow.

An hour or two later, he started vomiting again, and he wasn't able to stop for nearly an hour. Everything that came up was bloody. An x-ray was done, and we can see that Jude's stomach or part of his bowel (we're not totally sure yet) is distended to about 3 times the size it was yesterday. The plan for now, per the attending surgeon who's been following Jude this past week, is to put another gastric suction tube down his nose and decompress his stomach/GI tract. (He's actually being taken down to radiology to have the tube placed as I'm writing this.)

If you would, please pray that the causes of the bleeding and the persistent vomiting are identified so they can be stopped. Dr. Smith, the surgeon who's in the hospital today, said that if the distention in Jude's stomach and/or bowel can't be rectified by decompression with a tube, then he may have to operate. Pray with us that God would move in a miraculous way today and bring relief and healing to our little boy.

Friday, August 17, 2012

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?

Tuesday, August 14, 2012

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.

Monday, August 13, 2012

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.

Saturday, August 11, 2012

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!

Wednesday, August 8, 2012

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,

Sunday, August 5, 2012

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 27th 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 27th, 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!

Sitting up - August 2012