Saturday, June 30, 2012

The shortest of updates

(Not much time to write right now...but here is my quick facebook status to update all of you!)

Jude is doing well! Sleeping a little better each day and gaining weight. He is LOVING the snuggles and time on the farm. We are starting to settle in to a new normal with balancing his feeds and many medications. My family is taking good care of us and Annabelle is THRILLED to have her baby brother with her all the time. We are so thankful for your prayers. Thank you for being understanding about our desires to "quarantine" Jude from the outside world. We promise to have a BIG party to celebrate and share him with you....just gotta wait until he is a little bigger and stronger. We hope to share a blog update soon...just hard finding time to type while keeping up with these two kiddos! :)
So things you can pray for: 1) Jude's tummy to continue to improve so that we can start compressing feeds. 2) Better rest for all of us! 3) Our house in Simpsonville to sell. 4) A job from Brian. God bless you all! :)

Tuesday, June 26, 2012

Heading home.

The steadfast love of the LORD never ceases;
        his mercies never come to an end;
    they are new every morning;
        great is your faithfulness.
    “The LORD is my portion,” says my soul,
        “therefore I will hope in him.”
(Lamentations 3:22-24 ESV)

We are just moments away from taking Jude home! God is so good. Thank you Lord for blessing us. And thank you to all of our friends who have prayed and cheered our little guy on during this long journey!

Friday, June 22, 2012

Hello again!

Hi friends,

It's Rose again...except this time I am a little more rested. I think I should have waited to write a blog post until I was better rested. This morning I woke up and re-read my blog update from last night and laughed at my atrocious spelling! I was literally falling asleep mid-sentence every other minute.I thought about taking the blog post down and starting again...but I think I will leave it up for a reminder of just how tired I was during this stage of the journey! Ha!

So, let's try this again!

(I love that some of you sent questions for me to answer! Keep them coming!)

When Jude comes home what will his needs be?

We know for sure that Jude will come home being fed formula through his ng tube. Jude will not be getting a g-tube. So, he will come home with a pump that will be used to feed him. His pump will be connected to him throughout most of the day. He is on continuous feeds right now and will remain that way until we get the go ahead from his doctor. We will work closely with our local pediatrician to make sure that Jude is getting all the nutrition that he needs. Additionally, we will eventually work towards making Jude's feedings more compressed. This means that he will work towards a goal of having periods of time when his tummy is fed and full and then periods of time when he is off of the feeding pump and not being fed. This will be a very long and carefully monitored process. Changes won't be made unless Jude's little tummy is ready.

Brian and I have been trained on how to use and maintain Jude's feeding pump. We have also learned how to place his ng tube, prepare his formula and give him his many medications. He is currently on 5 medications, a vitamin and a few supplements.

At this point we don't think he will come home with a need for oxygen support but if he does have this need we have also been trained on how to use that equipment.

He will receive physical therapy, occupational therapy and speech to help him with his development and feeding by mouth. At this point we are not sure how often he will receive these but we are already excited about meeting his new team of therapists. We know that they will be a big part of Jude's life for the coming months or years.

We will continue to have follow up appointments at MUSC and a few at McLeod Hospital. He will continue to see many of the specialist that were a part of Jude's care while he has been at MUSC Children's Hospital.

Jude will also be getting a helmet to help shape his head. Jude's little head is a little misshapen because he spent so much time on his back when he was intubated and on ECMO. He will be fitted for this soon after we arrive in Florence.

Is Jude being fed by mouth at all right now? 

A little bit. So, Jude struggles a little bit with oral aversion (from having all kinds of tubes down his throat during his medical journey) and has a sensitive gag reflex. Through most of Jude's life we've all (parents, our awesome OT-Katy and Jude's nurses) been working really had to try to encourage positive mouth experiences. And thus far he continues to be receptive to happy mouth activities. Recently, he has been taking very small bites of pureed baby food. Overall he does pretty well with it but does have an occasional gag or throw up during the eating session. It is just something that we are going to have to work at every day...and I am sure that Jude will eat by mouth eventually. It will just be a slow process.
A bit of good news to share about Jude's eating abilities: Today Jude had a swallow study to see if he is capable of protecting his airway when swallowing foods. The speech therapist wanted to make sure that Jude was able to protect his airway when eating foods. The hope was that he would not aspirate into his lungs when attempting to swallow. Jude successfully swallowed both pureed foods and thin liquids (water)! Hooray! Huge praise! This gives us the "go ahead" to continue our practice with purees and now we are able to start practicing with thing liquids too. Previously we were not doing thin liquids at all because we were not sure if he was swallowing them properly. But now we will be able to work with Jude's therapists to take thin liquids orally...such good news!

Are you nervous about Jude leaving the hospital?

Yes and no.
Mostly we are just ready to have our family all together again. Jude is 6.5 months old and therefore we are quite certain that it is time for our little man to starting living his life outside the MUSC Children's Hospital. We are ready to leave hospital life behind but we are nervous about what might happen when we are home alone with our little guy. We certainly wish that we could have a nurse with us at all times to care for Jude if he needs help BUT we are confident that Jude is ready to start his life at home.
We feel a little more confident about him coming home especially since he appears to have enough lung strength to come off of O2. Our biggest worry is about Jude's digestive system. We worry about bowel obstructions and digestive problems. But I'm already praying that God will make any health problems with Jude very evident so that we catch them before Jude gets into serious medical trouble.
We are also nervous about exposing Jude to germs. A cold, virus or any illness could be especially rough on our little guy. Whooping cough alone could kill him. So we will be very cautious about his environment and the people he is around.

When can we visit Jude?

That is a tough one. As mentioned above, Jude can become very sick from a little cold or virus....and a big illness could be a HUGE set back for him. And as you can imagine, we are a little nervous about exposing him to anyone.
On the other hand, it totally breaks our hearts that we can't share him with all of you in the way that we would like to. We really wish that we could have a BIG "Jude is coming home!" party so that all of you could meet him and witness the amazing miracle that the Lord has given our family (and all of you)!!
So, when we arrive in Florence with Jude sadly we are going to limit visitors. (Insert big sad face here) We LOVE all of you, but we also want to make keeping Jude healthy a BIG priority. (and I know all of you feel the same way) We are not totally sure what our limits will be quite yet but we hope that you will understand our desire to be cautious with our little guy. We hope to do a more detailed post about visiting and seeing Jude in the next few days. (We plan to consult with the doctors about this)
Our hope is that we can throw a BIG party for our little guy next summer and we will all CELEBRATE and REJOICE of all the amazing things that the Lord has done in Jude's little life.

What can we do to help you when you get Jude home and settle in to your new home in Florence?

Prayer is our biggest need! We know that this will be a big transition for Jude...for us...for Annabelle...for my parents...our extended family...and our new community. Please cover us in prayer just as you always have.

A few of you have offered meals to help make the transition to home easier. And we are truly thankful. We are not quite sure what life at home with Jude will look like but having a prepared meal at home will be very helpful. Thank you!


Today I remembered what I was feeling the day that Jude was reintubated in the NICU. I remember thinking that I may never see my sweet Jude again without a ventilator tube down his throat. I remember thinking that his death was very near. And I was just SO sad.

But I also remember feeling comforted by the fact that all of Jude's sweet nurses and all of you would surround us with support and prayers if that day came.

But now, here we are...REJOICING together that Jude is nearly home.

Alive and on his way home soon.

And how sweet it is to be surrounded by so much love and JOY!

Thank you for following our little guy...we can't wait to share news of his homecoming!

Thursday, June 21, 2012

So much to share...

Hi friends!

We have so much to share with you...I've been thinking all day about how I wanted to write this blog post and finally I settled on a simple question and answer format because...well, because my brain is so stinkin' tired these days and I think it might be the easiest way to share what is happening with our little Jude dude.

So, what has been happening with Jude since our last blog post?
The doctors and nurses have been tweaking and playing with Jude's feedings (through his ng tube in his nose down into his stomach) to try to find a happy place for Jude's digestive health. Since our last post, it has been hypothesized that Jude's throwing up problems are due to the fact that his tummy is not quite ready to handle large volumes of food just yet.  So, they've backed down on the amount of food he is receiving but they've upped the caloric value's of his formula (with some helpful add-ins). His throwing up has slowed down since his rough couple of days (with one day totally 13 vomits) and we are beginning to see some improvement. He is still throwing up but not as frequently and many of his vomits are smaller in size that they were in previous days. The doctors are ok with a few throw ups a day (I know that there are many little kidos that have dealt with a lot of throwing up in their earliest months of life) as long as he is not losing weight and he is continuing to grow. It is SO HARD to watch him throw up so much. I'd give anything to make him more comfortable and not in constant battle with the contents of his tummy.

Additionally, Jude has been doing awesome from a respiratory standpoint. Yesterday the doctors decided to try him off of O2 support and he is handling it very well! Here is some cute proof:
We took this picture just moment after our nurse helped us take of his O2 cannula. His ng tube was out for a little while, so we took the opportunity to snap some sweet pictures of our little guy's adorable face!

As long as Jude tolerates being off O2 well and as long as he doesn't work too hard to breathe (and therefore burn too many calories, causing him to lose weight) then he will remain off O2. Please join us in prayers of thanksgiving for healthy, growing lungs for Jude!! Please also pray that he will be able to continue to stay off the O2 support. It would be great to bring him home without a need for O2 support!

So, what do all of these positive changes mean for Jude and his time at the hospital?
Well, basically they mean that our little guy is nearly ready to go home. By nearly I mean, Monday or Tuesday!!!! The last several days have been spent learning how to use and manage Jude's medical equipment and finishing up any tests or follow ups that the doctors want performed before discharge. We are SO hopeful that the upcoming days will hold a trip to our new home in Florence.

(Oh my, I am getting crazy tired right now. Please forgive me for any typos or poor sentence structure!)

When Jude comes home what will his needs be?
We know for sure that Jude will come home being fed formula through his ng tube. Jude will not be getting a g-tube. So he will come home with a pump that will be used to feed him. He is on continuous feeds right now and will remain that way until we get the go ahead from his doctor.

I must cut this short (I keep falling asleep in front of the computer) but I plan to pick back up tomorrow. Feel free to email/message me any questions that you have and I will try to answer them on our next blog.

Thanks for understanding...more soon.

But thank you for celebrating with us! :)

Sunday, June 17, 2012

Quick Update: Rough Day and Tummy Troubles Continue

So, Jude had kind of a rough day today. Despite intermittent periods of happy-boy-playfulness, he threw up 11 times. Please be in prayer with us that 1) Jude's tummy troubles might improve on their own and/or that 2) the docs will find the right regimen to help our little man improve enough so he can go home. No one knows exactly what's going on with Jude's tummy -- the pediatricians and even the GI docs don't quite know the source of the trouble -- so we all need the Lord's wisdom right now. And please pray for patience for Rose and me. This has been a long road.
    I love the LORD, because he has heard
        my voice and my pleas for mercy.
    Because he inclined his ear to me,
        therefore I will call on him as long as I live.
(Psalm 116:1-2)

Tuesday, June 12, 2012

Maybe?!?! In a week?!?!


Not much time left in my night for blogging but I wanted to share something pretty cool with all of you....
Today in rounds the doctors said that it is likely that Jude could be discharged from the hospital in the next week or so!!!!

Praise our amazing and gracious Lord for such exciting news!

We will post more about Jude's progress and the final hurdles before Jude ends his journey at MUSC in the next few days.

Until then, PRAY! Prayers of thanksgiving especially. But also for Jude to remain healthy and happy until discharge day!

* I am sensing that there are hundreds of happy dances taking place right now!*

I leave you with the lyrics and a link to a video of a song that we (Brian, Annabelle and I) have been really enjoying in the last several weeks. Annabelle and I cranked up the volume today and sang at the top of our lungs as we made the journey to Kohl's to purchase Jude's "coming home from the hospital" outfit. Size 9 months by the way...

Brother Moon - Gungor
Maker of it all
You provide it all
In You we live
In You we move
In You we have our being
You're glorious
You're holding us together all together

Sunday, June 10, 2012

The World Outside!

Hey, folks -- Brian here.

Things with Jude are gradually improving, although we still don't know exactly when he'll be going home or what the exact criteria are for his discharge. Even though we still don't have all the answers yet, in the last few days Jude has shown some improvement, i.e. he hasn't thrown up quite as much, so we're very thankful! Praise God! Along with Jude's improvement, Rose and I are getting a little more sleep at night while we stay at the hospital with him. Double praises!

In the days ahead, please pray with us that God would grant healing to Jude's body and that He would give wisdom to the docs taking care of Jude, that they might discern the right ways to tweak Jude's treatments and adjust his meds so he'll feel better.

Yesterday was a big day, folks. After 6 months of anticipation, we hit a milestone: Jude got to go outside! While in the NNICU and PICU, Jude had a number of "field trips" to other parts of the hospital for surgery as well as other tests and procedures. Even though the context of each "field trip" usually wasn't a happy one, it was always so cool to see Jude's face when he was en route between different areas of the building: His eyes would get HUGE with fascination as took in all the sights on the way to and from his destinations. If that's how he responded when he got to see different places inside a building, imagine our excitement for him when he got to see.....THE WORLD OUTSIDE!

Loading up in a wagon for our excursion! (Thanks to nurse Nessa for outfitting us and making this trip happen!)

Whoa! We're outside with Jude!

It's so bright and windy out here!

You think anyone would notice if I made a run for it?

This girl loves her little brother.

First outdoor family photo. :)

Can we go outside again!?

Wednesday, June 6, 2012


Hi friends,

Not much to say tonight except that Jude is still struggling with throwing up / feeding. He is throwing up as much as 8 times a day and losing weight. He is miserable and it is breaking our hearts. We know that Jude has severe acid reflux but this is too much.

Since I last wrote the doctors have tried adjusting some of the dosage on a medication that helps "wake up" his GI tract, they have added an additional acid reflex medication and then today they switched him from breast milk to a very simple and broken down formula to see if that would help his tummy troubles. If doesn't appear that the medication changes have worked thus far and we are still waiting to see how the formula impacts his throwing up and acid reflex.

Poor Jude. Most CDH babies struggle with acid reflux but Jude has an especially tough set of circumstances because he also has had a lot of trauma to his insides and who knows what kind of impact it has had on Jude's feeding and keeping food down abilities. I am truly not even sure what to ask you to pray for. Please pray as you feel lead for Jude's food tolerance and for healing. It is truly awful to see him vomiting so much. He is so little and so helpless...he just wants to feel better and do normal baby things!

As mentioned before, we are weary. It's harder to keep our spirits up when Jude feels so bad. Oh how we long for the day when Jude can enjoy life pain free! We feel SO stretched, but God is with us each step of the way.

But I wanted to ask you all to pray especially for baby Bee. Many of you have been following her CDH journey here:
Please pray Bee and her family tomorrow. Bee will be delivered at MUSC tomorrow morning/afternoon. Please join us in praying for a strong start, strong lungs and for the Lord to give Bee and her family just what they need each moment of the day. You have all been so faithful to pray for us through the many months and I want to ask you to pray diligently and without ceasing for Bee.

I hope to update you on Jude's progress with the recent changes soon! Please pray for a healthy, happy stomach!

Sunday, June 3, 2012

Finally some pictures!

When I last posted Jude had recently moved into a private room and since that post Jude has been given a bigger room with HUGE windows! This is the most sunlight that Jude has EVER seen. I celebrated with a little happy dance when I realized that he'd have a little more sunshine in his life.

Friends, Brian and I are oh so weary. This journey was been a long one (6 months long this coming Wednesday) and we are tired. We just want our little boy to be home with us. We want Annabelle to be with her brother whenever she wants to. We want Jude free from pain and testing. Brian and I want to be together.

We just want a deep, deep rest for our whole family.

Please join us in asking the Lord for this journey to be much shorter than we think it will be! And if He doesn't see it best for the journey to be short, please join us in asking him for even more endurance and strength for Jude (especially!) and our family.

Here is the latest on Jude:

- Jude is scheduled to be completely weaned off methadone tomorrow afternoon. Yesterday and today's weans were especially hard on our little sweetie. It is really hard to watch his body struggle to hold on to the last little bit of this drug. In the end it is better to be off the meds but it is had on his little body. My heart nearly broke in two today when he was crying and couldn't settle because his little cry sounds like "Ma!" over and over. Yesterday and today he received two PRNs of atavan to help him overcome the withdrawals.Please pray for this last little wean to be easier than the last. After he comes off the methadone he will be weaned off his clonidine.

- Jude is still throwing up several times a day. (insert big sad face here) Today was the worst day yet. The docs (and we) are scratching our heads for answers. On Friday Jude had a gastric emptying study completed to see if his digestive system was emptying normally. And it WAS!?!?! We weren't sure if we should celebrate or not....because... well, we wanted some answers. And we are still without them. And the docs don't want to move forward with deciding how Jude will be fed until we can figure out why he is throwing up so much. And so, we wait and try to figure out what is going on with our little man's tummy. Many of you have asked how soon we might be taking our little guy home...our answer? We really don't know but we hope to know more this week. Will you just pray over this whole situation? We know we can count on you, our faithful prayer warriors!

As promised, here are a few pictures from the last two weeks:
 Another sweet visit between siblings!
 Getting ready to move from the PICU to a private room. Holding hands with my little buddies to make sure they feel safe! :)
 Here is Super Bear again! Jude is quite attached to this little guy. Super Bear is officially a bedtime necessity!
 Visit from Nana Beth, Aunt RaRa (notice the rainbow earrings and bracelet!) and Annabelle!

Jude also got visits with several of his NICU girlfriends (ahem, primary nurses)! We were so excited to see all of them and celebrate Jude's progress. We love these ladies! (Some of our NICU friends came when Jude was sleeping so we are hoping that they will come back for a picture with Jude so that he can always remember them!)
 Jude and Erin
 Jude and Anne
 Jude and Meghan
Jude in his new BIG room! LOVE the big windows with a view of the big bridge (and a parking garage, haha!)