So much happening but so little time to share!

Hi again!

I wish that Brian and I had more time to sit down and write a looooong blog post about everything that has happened with Jude over the last two days!!!! Our little man is working so hard!

But I must be honest, the pace of this stage of the journey is tough on our little family.

At this stage in Jude's journey, we feel like we should be with him as much as possible (even rooming in...how cool is that?!?!) to be his advocate and to be a part of his day to day development. But this also means that when one of us is with Jude the other is with Annabelle and therefore Brian and I are rarely together. We are already tired but pushing through because we know that this is a very exciting stage in Jude's life! Will you pray for renewing rest for Brian and I? Will you pray that Annabelle feels balanced and loved even though she is not seeing both of her parents at the same time? We know that this is just a season in our lives and that the Lord will provide for our needs for every day...just as He always has!

So, I know you want to know what my cutie has been up to. Here are the highlights:

-He was moved to his own private room in the Children's Hospital on Tuesday! He seems to really enjoy his big boy room and we are quite thrilled about the fact that we can be with him overnight. On Tuesday afternoon, the nurse closed the door and I realized for the first time that I was alone with Jude for the first time since he has been born. I was in tears. What a beautiful moment it was to snuggle my sweet little guy.

- Jude is on nasal cannula still, but remains on very low settings. I think that the doctors think he is capable of coming off the oxygen support but they want to be extra cautious and totally sure that he is ready. He are thrilled with his respiratory progress! Praise God for those growing, hearty lungs!

- Jude is now off of the medications that he was on in the NICU and PICU. He only has two remaining meds to wean: methadone and clonidine. He will likely be off methadone by Friday and the clonidine will follow shortly thereafter. It is hard to imagine Jude free of any sedatives or pain meds. Please pray that Jude will avoid experiencing withdrawals. He has been working so hard to get off these medications...what a tough little man!

- Will you join us in praying for Jude's feeding? He is still being fed through a tube in his nose directly into his stomach but he continues to throw up a few times a day. He was throwing up a few times a day when he was being fed into the top of his intestine a few days ago but it's just no fun watching him throw up over and over again. My heart breaks for him each time he vomits. It is understood that Jude has severe acid reflux but we are wondering how much vomiting is actually ok. We've been working closely with OT, speech and Jude's doctors to get some answers. Yesterday he had an upper GI study and it was discovered that everything is moving through Jude's digestive tract fine despite his matted intestines. Praise God!!! (I did a little dance in the x-ray room when we got this news!) Jude tried some baby food apples and rice cereal by mouth today and he seemed to enjoy the food (and even swallowed some!) but then threw up. Poor sweet boy! Overall, just continue to pray for Jude's eating abilities whatever they might be. At this point, we know that feeding is mostly what is keeping Jude in the hospital. We want answers, but we want well informed and thought out answers. As much as we are anxious to get home with Jude, we are more anxious to be sure that Jude is going to be able to get nourishment in the best possible way. Please join us in petitioning the Father for clear answers on what is healthiest for our Jude.

Well, that's all for now! We hope you will join us in celebrating this amazing milestone in Jude's journey! To God be the glory for the miraculous things He has done!

*Hoping to post some new pictures of Jude in his new place in the next few days!

Just some FUN news!

Guess what?!?!

Jude is being moved to a private room tomorrow at the Children's hospital! Hooray!

More details later...

(P.S. We truly appreciate the desire to visit Jude, but please no visitors at this point. Jude is still vulnerable to illness. Thank you!)

A quick, late update!

Hi friends!

Rose here.

We apologize for taking SO LONG to give you an update on our favorite little guy. This week has been GREAT for Jude...but not so great for Jude's mommy. Sadly, I was so sick this week that I only saw Jude once this week. It totally broke my heart but I knew that I had to stay away to keep my little man healthy and well. After IV fluids and a trip to the ER, this dreadful illness has nearly run it's course and is on it's way out thanks to two types of antibiotics! (And a sweet hubby who balanced our two kiddos and running a house....and two awesome parents who swooped in during the middle of the night to rescue all of us!) The plan is for me to see him tomorrow and I can't wait!

So, what has Jude been up to since his move to the PICU???

- Jude is off of Vapotherm and now on nasal cannula!! AND he is on very low setting on nasal cannula! (for all the other CDH parents out there: .4 ltrs!)

- Jude was put on methadone soon after arriving at the PICU to help him wean off of the two hefty medications he was still on. On Friday he was officially off of the Fentanyl and tomorrow morning they will turn off his Versed! Woo Hoo! Now he will begin the journey of coming off methadone and clonidine (also used to help him wean off the drugs mentioned above).

- Jude's tube that was in the top of his intestine was moved into his stomach on Friday. And so far he is tolerating his feeds into his tummy really well! This is a HUGE praise!!!! He has thrown up a few times but this is expected because of his acid reflux and his withdrawals from medications. Please pray that this continues to go well and that the doctors will feel confident in moving Jude forward with his feeds. We are thinking that the next step will be compressing his feeds into shorter amounts of time.

- Because of Jude's progress with weaning his medications and feeding, the doctor mentioned to Brian that Jude may be moved to a step down unit as early as Tuesday! We are excited and nervous!!! Please pray for this transition and for the doctors who will make the decision about this step. We want to be 100% sure that he is ready!

What you can pray for:
-The big G tube debate: Jude's PICU docs think Jude may still need a G tube but Dr. Hebra may not be comfortable (because of Jude's altered insides) with putting a G tube in. So, Jude might be fed through the tube that he currently has from his nose to his stomach. But he could also take to feeding by mouth.......

As you can see the issue with feeding is a big one.

We aren't quite sure what will be best for Jude. We what to do what is safe and beneficial for our sweet little man.

We just want him healthy!

Will you join us in praying for the many discussions that will occur regarding Jude's eating for the future? Please pray for a lot of wisdom for the people evaluating Jude's eating abilities.

- Annabelle: As I was writing this post our sweet Annabelle woke up and threw up. BIG bummer. Please pray that it was just the result of too much junk food today and that she will wake up perfectly healthy!

I apologize if this blog is short and scattered. My brain is simply not capable of writing clearly tonight. We've had so much on our plate lately. Thank you for lifting us up in prayer. We are truly thankful, friends.

God bless!

Hello from the PICU!

Hi friends!

 Guess who moved to the PICU today?

This ^ ^ ^ happy baby!

The plan was to move Jude to the PICU on Tuesday but I (Rose) got sick on Monday night and it was logistically difficult for Brian to balance a very sick wife, Annabelle and Jude's move. So, our wonderful NICU friends postponed Jude's move to today so that I could have a little extra time to recover.

Jude made his big move at 11am this morning and all went smoothly. He is already well known over at the PICU thanks to all of his wonderful primary nurses (and some very special non-primary nurses) from the NICU.

What would we do without them? Just thinking about these ladies makes me tear up. I don't think that I have the words to truly express just how dear each and every one of these nurses have been to Brian and me. This has been our hardest journey yet and Jude's faithful nurses have loved him and cared for him tirelessly for months. They helped us face our darkest days and celebrated Jude's victories with us. We are so thankful for each and every one of you. Each of you have individual and beautiful gifts that you share with your patients and their families. Thank you for what you do. We will thank God daily for you and Jude will grow up knowing just how lucky he was to have such wonderful NICU girlfriends! (I am talking about you- Lesley W., Meghan B., Kayte R., Anne H., Caroline C., Erika G., Erin B., Sara C., Martha D., Beth, Sarah H.!)

Jude's new doctors did not make any changes to any of his medications, Vapotherm or feeds....that will all be discussed and changed tomorrow.

I'm sure that you may be wondering what Jude is facing before going home.
Here is the scoop:
- Respiratory: It is likely that Jude will be moved from Vapotherm to nasal cannula sometime in the near future. We are very happy with the progress that Jude has made from a respiratory standpoint and we remain hopeful for his lungs to continue to grow and expand. Jude can go home on oxygen support from a nasal cannula but he must also conquer...
- Weaning his medications: Jude is still on pain medications and sedatives from his 2nd repair surgery. The PICU is really going to focus on weaning his medications and hopefully he will be free of these soon. He will continue to receive other medications that he may need for awhile (even after going home). But Jude also must figure out how to...
- Eat: This is a BIG one. There are so many possibilities to consider for Jude's digestive future. Will he get a G-tube? Is a G-tube a safe thing for Jude? Will Jude be able to tolerate feeds into his stomach? (He is still being fed into the top of his intestine) Will he be able to tolerate his feeds being compressed to shorter periods of time? Are we capable of learning how to feed him through a tube in his nose if they can't do a G-tube?

Whew.

Please just pray for all the tummy and feeding challenges ahead!

But here is a fun picture of our little guy taking some breast milk from a spoon!

How cool is that!?!?

That is all for now! We hope to share more with you soon!

Thank you for your prayers! Our little guy is getting bigger and stronger every day!

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!

Not quite sure

Hi friends,
Just wanted to give you a quick update on our little guy Jude.

Yesterday was a tough one for Jude...but as of right now we aren't totally sure what is bothering our little guy.

Yesterday it was my morning to visit with Jude and I spent some time playing with him, went to rounds and held him. He seemed a little fussy in the beginning but as the morning passed I grew more and more concerned about the way that Jude was acting. He was really weepy and wanted to snuggle extra. He just wasn't playing like he has been. His heart rate and rate of respiration were also higher than they've been over the last few days. And he had a slightly raised temperature.

So, I notified his nurse of my concerns and she went to get one of Jude's doctors. As I was waiting for the doctor to come to Jude's bedside I started playing with his feet and noticed that he seemed to wince and cry when I lifted his left leg. So, then the nurse and I looked in his diaper and noticed that the area where he had a femoral line (from his surgery) in was red.

The doctor (his resident) came in and checked Jude over and then the fellow and the attending doctors came over as well. They ordered a chest x-ray (which turned out perfectly fine with no concerns), drew some blood for cultures/tests, and did an ultrasound on the swollen femoral area.

We are now waiting to see if Jude's blood cultures are going to grow anything to see if he might have some sort of infection. The ultrasound showed some inflammation in the femoral area and therefore they started him on antibiotics in case there is an infection.

This morning Jude seemed a more perky during his visit with his daddy but he also seemed to be a little "junky" when his nurse listened to his lungs today.

Basically right now we are scratching our heads and wondering just what is going on with our little man. He's just not himself and he needs some extra love.

Will you pray for Jude's recent illness? Please pray that whatever is plaguing him will resolve quickly. Please pray that this will not become a major illness. Please pray that it will not turn into something more severe.

As Jude's mommy it is getting so hard to watch him face battle after battle. It just broke my heart yesterday to see him so weak and tired from whatever was bothering him. It is so hard to leave him each day. I just want to stay with him and cuddle him until he is well. I want so badly to have him in my arms anytime that I want to.

So, that is the update for now. As far as I know the plan is still to have Jude moved to the PICU next week sometime. We will update you as we learn more about what is making Jude feel so crummy.

Blessings to all of you!

Thank God for Mommies

Happy Mother's Day, everyone!

Today was a great day for our little family. Jude continues to do well: He's in stable respiratory shape on Vapotherm, he's tolerating daily increases to the amount of food that he's being given, and he's slowly being weaned on his sedation. Since our last post, Jude has been a very happy baby! He still has his moments when he gets upset for one reason or another, but he is increasingly content, even smiling and -- wait for it -- laughing! His mommy likes to tickle him, and she's even managed to elicit a few laughs over the last day or two. It's hard to express how cool and exciting we are about our Jude's little giggles. :)

Sometime soon -- we're not exactly sure when -- Jude will probably be moved to the Pediatric Intensive Care Unit (PICU), which is across the hall from the Neonatal Intensive Care Unit (NICU) where he's lived for the past 5 months. Since Jude's a bigger kid now, the PICU staff may be in a better position to treat his various issues. Rose and I know that this change will be good for him, but we're also sad to leave the nurses and doctors in the NICU that we've come to know during our time here. Overall, though, if moving to the PICU is on the path to bringing Jude home (and ideally bringing him home sooner rather than later), then we're all for it! We'll share more info on this upcoming change as we learn more.

In honor of Mother's Day, Annabelle visited the NICU so that our little family could be together. As before, Rose and I were particularly excited about our children getting to see each other. It was a sweet time together. :)

Smiley boy. :)

New toys.

Resting well.

Annabelle visiting her little brother. :)

Happy Mother's Day!