Friday, February 14, 2014

So much to say.

Happy Valentine's Day, friends!

We hope that this blog entry finds you all happy, healthy and loved.

It's been awhile since our last blog update. It's been so long that I had to go back and read the last post to remember how much has happened since our last post!

Well, this little man turned two years old!


We celebrated with several little family celebrations because of isolation season...but he still had a BIG time!

And, yes, this cake has dairy products in it because Jude is no longer allergic to dairy! Yay! Strangely, he is not a fan of many dairy products. He doesn't like milk or cheese unless they are baked into food.  So, we've gotten creative and he is still taking calcium supplements.

A few weeks after Jude's birthday we celebrated Christmas...well, sort of. We were hit with out first seriously family illness. Somehow (thank the Lord!) Brian was able to remain well but the kid's and I were all very, very sick. And in the end, Jude ended up with pneumonia. He really struggled for several days and under the close eye of our awesome pediatrician (and some antibiotics) he was able to avoid a hospital stay. We are SO thankful that he did not need to go to the hospital!

So, the photo above is actually a re-creation of what Christmas day might have looked like. This photo was actually taken around New Years Day! 

And our biggest news?

In my last post I shared that we had not been using Jude's g-tube since our visit to MUSC and we've not used it since. And thankfully the Lord has helped Jude grow and gain weight.

And so, at the beginning of this month Dr. Hebra and his team decided that it was time for Jude's g-tube to come out!

The last photo of Jude's tummy with his g-tube! 


Jude was a little nervous because his most recent doctor's visits mean a shot. Jude is still getting Synagis shots every month to help his little body fight hard against RSV if he ever caught it. And when the nurse pulled out the syringe to remove the water from the bubble that holds Jude's g-tube in he totally freaked out! And before we knew it, the g-tube was out. And his sweet sister was by his head reminding him, "No more tubie brother. No more tubie" His daddy beamed. And mommy cried. 

I was a little emotional about that little tube. 
It fed my son when he was unable to eat on his own.
If it were not for that tube, Jude would not be here.
And when we learned about Jude's CDH diagnosis I was terrified that Jude would need a g-tube. 
I refused to believe that it would happen to him. 
But it did. And man, I'm so thankful for that g-tube. 
And I hope he will always be proud of that scar. 
I hope that he will know that the Lord moved in great ways to help Jude learn to eat all of his nutrition by mouth. 

Gosh. We are all so proud of Jude. And so was Dr. Hebra!

After this photo, I asked Dr. Hebra when we would see him next. We've become so used to our visits every six months and I was anticipating that we'd be stretching out visits out to a year. Instead, Dr. Hebra said that we would not need to see him unless we need him! And he added, "I don't want you need me.I only want to see you for happy reasons."

And again I broke in to tears!I think Brian and I each thanked Dr. Hebra a 100 times. 

And even after he left and we gathered our things, I stopped at the nurses desk and asked her to thank Dr. Hebra again for saving my son's life so many times. 

I wasn't expecting this: such a mixture of sadness and joy!

During our visit we also met up with several of our favorite nurses, therapists and doctors. It is always so good to see our friends again. 

It was such a special and emotional day in Jude's journey with CDH. 

Thank you to all of you for continuing to pray for Jude and cheer him on. We are so thankful for all of you too! 


Onward into 2014!




Thursday, October 24, 2013

Closing in on two...

Hi!

Jude's mommy here.

Yup. It's been awhile.

Again.

I guess you could say it's getting harder and harder to find time to update this little blog. Why? Well, because our sweet boy is keeping me on my toes!

Here are a few updates:

Since my last post (in August) we've not used his g-tube for a single supplement of water or food. He is totally sustaining himself nutritionally and he no longer needs extra water placed in his g-tube to make sure he is well hydrated. He is a happy eating and drinking little boy. For fun, I thought I'd list some of his favorite foods: donuts, bagels, peanut butter (on anything), ketchup (on everything!), eggs strawberries, applesauce/apples, cheese-its and goldfish, and he is still a lover of baked beans! As you might have noticed there aren't any veggies in this list. Jude puts up a big fight about eating his veggies...so he is on a multivitamin.

If Jude continues to do well with eating/drinking the plan is to remove his g-tube in February 2014! Please join us in praying that this will happen.

Jude is still considered "allergic" to dairy products. But his allergist gave us permission to feed Jude food with milk "baked in". Like breads, muffins, crackers, etc. He has been eating a lot of "baked in" foods and recently we started giving him food items with a little bit of cheese. He's been successfully eating cheese pizza and a few other dishes with small amounts of cheese. We feel pretty certain that he is on his way to growing out of this allergy. Yay!

Developmentally Jude is on target. As I mentioned above, he is eating just like a normal little boy. Physically he is on track too. He is walking just fine....and running. He's a little clumsy...but so is every other 22 month old! From a speech standpoint he is "wowing" us daily. He talks ALL the time. Nearly knows his ABCs and can count to 10. (We don't deserve credit for this AT ALL. Annabelle was his teacher) Every time I hear him say a new word, I think to myself "this should not be!" Our sweet boy was on ECMO for so long and sustained such trauma and has faced so many delays...I thought surely his speech would become an issue. But oh how the Lord has surprised me!

Jude is still seeing pulmonology, neurology, allergy, ophthalmology and surgery. He is completely off ALL medications. Yup, that's right. No more acid reflux!

Overall, Jude seems like a pretty healthy little toddler. He is enjoying life, food and people. And that just makes my heart swell with joy!

In everyday life, I think of Jude as a normal little toddler with normal toddler challenges. We are facing the typical toddler tantrums, curious little explorations and lots of laughter! But every once in a while, a little bit of fear creeps in. Fear that Jude's gortex patch (his artificial diaphragm) will break and send our sweet boy into a tail spin of medical issues. I fear facing that day. And my prayer continues to be that he will never face such challenges again. Will you pray this with me?

In the same vein, Jude's pulmonologist has recommended that Jude be in isolation again this winter. As we mentioned last fall/winter...Jude's lungs are not the same size as other kid's lungs his age. They are smaller because his organs pushed through the hole in his diaphragm and stunted their growth. And since they are smaller he is at greater risk of having to be hospitalized after a respiratory illness. RSV and the FLU would be especially scary for Jude. Yes, it is good for Jude to build immunities...but it is better for us to protect his small lungs from a damaging illness until they have had more time to grow and expand. And THEN he will be ready to take on those immunities that he needs to build.

As you may remember, we had Jude in isolation last fall/winter. We were pretty strict and limiting with Jude's time outside of our home. This year we will again limit some of his activities but we've loosened up in a few areas.

Here is the scoop:

- Jude won't be in nursery at church. Brian and I will be alternating turns attending church this year. One of us will go with Annabelle and the other will stay home with Jude.

- Last year, we did not do any playdates. But this year we are planning to enjoy small playdates with children/adults who are symptom free. If our playdate buddies have symptoms we will not attend. No one needs to miss out on the fun because of us. We'll just stay home and stay well.

- Sadly, during this isolation period we will not have other children in our home. (insert BIG sad face here) But we feel certain that we need to keep out home as germ free as possible. We are happy to visit you at your home as long as the members of your household have been symptom free. I hate "closing" our home. This one seriously bums me out.

- Adults can visit as long as they are symptom free. Please let us know before you visit if you (or someone in your household) has been sick recently.

- We plan to continue with our public outings. (grocery store, Target, etc.) Just don't be surprised when you see my over sanitizing the shopping carts and the kids hands. We usually change clothes after public outings too.

- Annabelle will continue to go to school. She takes a bath every day after school to minimize the risk of bringing something home. Thus far it's worked! Please pray for Annabelle's health during this season too!

- Most importantly, please know that we will remove Jude and our family if someone is ill. We don't want other people missing out on events, get togethers, etc. because of our "isolation". Please keep us informed. We are ok with missing out on things if it means keeping Jude healthy.

I also want to ask all of you for prayer for our family during this season of our lives. Isolation (although this year is a little better) can be lonely. It's hard not to enjoy a lot of the things we normally participate in during the warmer months. We are easily forgotten when get togethers are planned because we've "been out of the picture" for awhile. Will you pray for healthy bodies, hearts and minds during the coming months? Will you pray for opportunities to enjoy community with others? Will you pray for Brian and I to have opportunities to be together, just the two of us? Our isolation officially kicks off November 1st and will last until March/April.

And guess who will be 2 in December!?!!?!?

Thank you friends!!

Ok, on to a few pictures. I know that is what you are waiting for:
 Park visit in Charleston
 He LOVES being with his daddy.
 Enjoying donuts after flu shots!
 A trip to the apple orchard. A family tradition!
 A CDH kiddo and families meet up. (another blog about this coming soon)
From left to right: Lily, Bonnie, Clara, Parker (and their mommies)
Jude's costume for dress up :) 
 Guess who is in a big boy bed now?!?!
Enjoying our local zoo! 

Thursday, August 22, 2013

Busy boy!

Wow! Is it really August (and nearly September?!?!) already?

Thanks for sticking around to follow our sweet Jude and his progress!

So, the last time I wrote Jude had just figured out his sippy cup and was in the process of mastering a straw. And with a lot of hard work, prayer and help from our amazing OT (Amanda!) Jude is now a skilled drinker! Yay!

In the beginning he really struggled with getting enough volume. He wasn't taking much in and it was stressing this mommy out! So, at the end of the day we'd give him some extra water through his g-tube to "catch him up" on his fluid intake. To be honest, I spent a lot of time stressing about the amount of liquids that he was taking in by mouth. I thought he would never drink enough to sustain him!

But, again, after a lot of hard work and prayer Jude started drinking more. And started eating more liquid rich foods (many fruits and veggies) and it started to look like he might be able to handle this drinking thing on his own. But I was still so, so nervous about him getting dehydrated!

Fast forward to 2 weeks ago: We go for a visit to MUSC for Jude to see Dr. Hebra for a follow up appointment. Dr. Hebra is super pleased with Jude's height and weight gain and tells us to simply stop using the g-tube. He thinks Jude is totally capable of drinking enough and that the important thing to watch is the number of wet diapers he is having. And Dr. Hebra said that he'd take Jude's g-tube out in February if we can not use the tube until then! (Side note: Dr. Hebra asked us to wean Jude's reflux medication because Jude doesn't seem to be showing any signs of reflux. So, in two weeks he will be completely off all medications. Isn't that amazing?!?!)

So, we left MUSC that morning and haven't given Jude a single "catch him up" bolus of water. And you know what? He has done just fine! He drinks enough to have plenty of wet diapers and we are just SO proud!

Additionally, shortly before the visit to MUSC our sweet OT was able to discharge Jude from feeding therapy! I think my facebook status sums this up pretty well:
"Yesterday was a day that we thought would be years away. Yesterday was a day that I was certain we would all fight hard for. Yesterday used to seem like an eternity away. But what happened yesterday came much sooner than I expected. Jude was officially discharged from occupational/feeding therapy. We can only give praise to our Lord for the unbelievable progress that Jude has made in his eating journey. I'm pretty sure we all thought he would be facing feeding struggles until he was a pre-schooler. And miraculously it only took him 19 months to learn to eat like a healthy kid. The Lord is good. And we thank Him for making Katy, Elecia and Amanda (all Jude's feeding therapists during this journey) a part of his life. Thank you for loving on our little guy!"

And yesterday?
Jude was discharged from physical therapy!!! And again, HUGE thank you to our outstanding physical therapists that the Lord placed in Jude's life during this part of his journey. We are so thankful for Susan, Shannon and Kacie!!

Jude is completely finished with all of his therapies! WOWEEEE!

So, the Over the Rainbow celebration was such a great day! We were surrounded by so many sweet friends and new friends who had prayed for Jude and our family over the last several years. It was so amazing to celebrate and enjoy the evening with everyone. There were musicians that shared their talents with all of us and truly set the stage for a night of remembering the gifts the Lord had given us! Thank you to everyone who joined us! It was such a reminder of how the Lord surrounded us with the body of Christ during Jude's hospitalization. 


Jude, Daddy, Mommy and some of our favorite nurses and therapists at the Over Rainbow celebration!

We've had a busy summer too! 
- Jude and Annabelle enjoyed the zoo with us and their Nana Beth and Papa Jack
- Celebrated the 4th of July at the lake house with all of their cousins
- Had playdates and pool time with our neighbor buddies
- Enjoyed some time at the beach before Jude's appointment at MUSC
- Celebrated Annabelle's birthday....which by the way included the meeting of two very cute CDH super heroes! 

Leslie, Bonnie (a.k.a. Baby B), Jude and Mommy




Wednesday, June 26, 2013

A Normal Day?

This morning, I woke up and dropped Annabelle off at her little pre-school summer camp.

Brian was off work and we decided to take Jude to his first toddler friendly program at the library.

Jude had a tantrum and lasted only 5 minutes. So we left.

We had some free time so we went to the mall. Got Jude a little cookie and strolled around.

Jude ate his whole cookie and took several gulps of water.

After strolling for awhile, we had an early lunch. Chic-fil-a.

Jude ate 4 chicken nuggets and countless french fries. Dipped in generous amounts of ketchup.

All dipped by Jude himself. Oh, and more water.

Then we picked up Annabelle from camp. And Jude joined his sister in plenty of laughing on the way home.

And now he is taking a long, hearty nap.

Today is June 26, 2013. 
And I LOVE, LOVE, LOVE that today felt like a normal day.
With a fussy kiddo who couldn't sit still at the library.
And a meal with my husband and son.
And my son ate and drank food by using his mouth.
And he sat in his car seat and laughed with his big sister.
And he slept in his own bed.


On June 26, 2012 this is what we were doing:
 Riding the elevator down on Jude's discharge date.
Some of our favorite nurses holding up a goodbye sign for Jude.


It sounds strange...but I kinda feel like June 26, 2012 was Jude's 2nd day of birth.

On that day, we really felt like he was ours to keep. Kinda like a "gotcha" day.

We'd loaned him to MUSC for 6.5 months and on that day we were finally bringing him home.

We were thankful, frightened, excited and REJOICING!

I remember how overwhelmed I felt with the blessing of taking our sweet boy home. The Lord was so gracious and never left us during this long, hard journey.

My heart was sad to leave the dear friends (doctors, nurses and CrossBridge friends) we'd made. But I knew they were cheering our boy (and us) on as we packed up Jude's stuff and loaded him into the car. And their prayers followed us.

I get seriously weepy just thinking about that day. Precious Lord, you are so good. Thank you for the moments in life that you give us to remind us of Your glory and Your love for us!

As we rode the elevator down on June 26, 2012 with Jude in my arms, I don't think I could have ever imagined the journey the Lord has planned for us. It has been SO hard some days. But it has been SO amazing on other days. I never thought that we'd have "normal" days like today, June 26, 2013.

Thank you Lord for the year that you've given our family!

Monday, June 10, 2013

Over the Rainbow

As many of you know, July 27th 2004 (Rachael's car accident) and July 27th, 2011 (Jude's CDH diagnosis) were very difficult days for our family. This year, instead of remembering how awful those days were we've decided to celebrate the blessings the Lord has given our family since those days. 

Throughout both journeys we experienced rainbows as reminders of the Lord's presence in our lives during these difficult times. So, we are calling this our Over the Rainbow Celebration to help us remember and celebrate the joy the Lord has given us from his abundant blessings during our "storms".

We will be celebrating all evening, so come anytime! Bring your own picnic dinner to enjoy the evening with your friends, family and all of us. We will have cake and drinks to share with all of you. And we are hoping to have some live music (let us know if you are interested in playing for the group that night). Plus, plenty of fun outdoor activities for everyone.

No gifts please. Instead of gifts we would love to give a large group donation to Cross Bridge Ministries of Mount Pleasant, SC. Cross Bridge is the organization that helped Jude's family during their long stay in Charleston during his hospitalization. (Check out their website: cross-bridge.org).

This event will take place in low-state SC. For privacy and safety reasons, please contact us by email for event location information and to let us know that you plan to attend:
Just.enough.for.the.journey@gmail.com

We are all very excited about sharing this day with all of you! Thank you for being a part of Rachael and Jude's journey. We are so thankful for your prayers, love and support!


When: July 27, 2013 5pm until 8pm

Wednesday, May 29, 2013

Our God who heals

This is a short little post...but I just wanted to share this with you....

At bedtime tonight, Annabelle, Jude and I snuggled up into Annabelle's bed. (Brian was working late tonight)

We read the story of Jarius' sick daughter from the Jesus Storybook Bible. As many of you may remember Jarius' goes to Jesus to ask him to heal his daughter who is very ill. And as Jesus is traveling to Jarius' house to encounters a crowd and a woman that also needs healing. And by the time He arrives Jarius' daughter has died. I can only imagine the depth of the hope that was followed by the immense pain that Jarius and his family felt in that moment.

But Jesus tells Jarius and his family that his daughter is not dead, she is simply sleeping. And he speaks to her...she awakens...and rises from her bed. A true, amazing miracle. As I read this story to my sweet children I imagined the joy and the amazement felt by Jarius and his family. They witnessed the complete healing of their daughter.

And as I snuggled up to my kiddos I was reminded that we've been witness to a miracle as well! Jude should have died....many times. But the Lord provided miracles and healing for our son. How thankful we are to have witness a truly miraculous healing!

And then I was reminded also of the sweet babies with parents who prayed for miracles...just like us. But the Lord choose for their complete healing to be with Him...in His loving arms.

My heart rejoices from the joy I've been given from having my son with us today. But my heart is also holding closely all of you out there who have lost your precious children. We did not lose Jude. But we nearly did...so closely I could taste death's sting. And I just feel it is important to tell you that you (parents of children who left so early) are not forgotten. And your children are close to our hearts as well. We will always remember and pray for you. Always.

Wednesday, May 22, 2013

May Update

Hi again! :)

Time for your monthly Jude update...

Jude has been BUSY again!

Since my last post Jude figured out how to drink via zippy cup and just last week he figured out how to use a straw! Big steps (or I guess big sips) for our little guy! He is having to work extra hard when drinking out of a straw but he is getting the hang of it pretty quickly! In the last week he has been drinking more and more by mouth. We are super excited about his progress! The g-tube will remain with him still but we plan to talk with Dr. Hebra and his favorite MUSC team in August about their thoughts on when to remove Jude's g-tube.

Jude has also learned how to eat with a spoon and he has nearly mastered eating with a fork. Here's a little video of his spoon skills:
video


This past weekend my parents were in town to watch Annabelle in her first dance recital (she was SO cute and she had a BLAST!). When they first arrived at our front door Jude was working on walking with our awesome physical therapist, Kacie. As I opened the door he saw my parents and took several steps towards them with a giant grin on his face. He hasn't stopped walking since. He's on the move and on his way!

In not so fun news....
Since our last post Jude had a cold, followed by an ear infection and then a week later an infection in his g-tube. Those were some seriously not fun days for our sweet boy. But he has pushed through and recovered well.

But, we have some great things planned for this summer:
- 1st trip to the zoo
- 1st trip to the lake
- 1st family vacation
- 1st visit to the neighborhood pool
- 1st 4th of July get together (big deal in our family each year)

I'm sure there will be even more exciting events in Jude's summer!

Especially with his awesome big sister by his side.