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

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.

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:

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.

Steak and potatoes kinda guy

Hi friends!

I guess I'd better go ahead and say that it seems that I am only capable of writing a monthly blog update. I always plan to write more but the little people are just keeping me too busy.

So, I'm sure you are curious about the title of this blog post.

Well, our boy is eating.

Well, actually....it's more like he is pigging out!

We've been amazed by the progress our little man has made with eating. He started a little slow and now he is a real pro!

Our awesome OT encouraged us to try all kinds of food to see if he has any texture issues or trouble chewing different types of food. The kiddo eats it ALL. No joke.

Thus far the only food he refuses to eat is lima beans. Who can blame him?!?!

Jude's favorite foods are the "man foods". Steak, potatoes, beans....you get the idea. He's always been a big boy....now the food he is eating is going to make him even bigger!

We are SO proud of him!

So, I am sure you all want to know about his g-tube. Does it stay or does it go?

As of right now, it will remain with Jude.

Right now Jude doesn't know how to drink so he is still receiving most of his fluids (water and soy milk) via g-tube. In the last few weeks he has been "drinking" a little bit here and there. He never learned to suck so pulling fluids into his mouth is a challenge. Currently he is working on drinking via a squeeze straw....kinda like a juice box. For the last week or so he has taken about 2oz 3 times a day. And this evening he took 4oz at dinner! (Mommy did a happy dance)

So, that is one of our big prayers right now....that Jude will learn to drink with his mouth. It is so hard to imagine him receiving all of his nutrition by mouth. But I'm confident that the Lord can get him there.

And thank you for your encouragement and prayers during this feeding journey. It has been a lot of work and we are so thankful that Jude jumped on board so quickly. We know of many CDH families that struggle for years with eating by mouth. It is such a hard spot to be in and a huge commitment to practice eating meal after meal...day after day.

Earlier this month Jude had a small procedure done at our local hospital. He went under anesthesia and was placed on the ventilator for the procedure. He remained stable throughout the entire surgery and came right off the ventilator without any trouble. Praise God for making it so! The original plan was for Jude to stay overnight so that the doctors could monitor him. But Jude handled his post-op time so well that we went home in the late afternoon!

Jude isn't walking but he could be! He is just so dang hardheaded (guess that is a plus when you are fighting a life-threatening birth defect. The boy just won't give in!) and clearly wants to walk on his own timetable. Crazy kid!

We are still slowly coming out of isolation. Jude is experiencing more and more of the outside world. We are still keeping him out of nursery at church and keeping him away from anyone that we know to be sick. Thus far he hasn't been sick and we are so thankful for that! Thank you to everyone who continues to help us keep Jude healthy until his lungs can grow bigger and stronger.

Jude still appears to be allergic to dairy products but at our last allergist appointment Jude's doctor did a blood test and the results of that blood test suggest that Jude might be able to pass an in office "challenge" of drinking/eating dairy. We of course would LOVE for him to have dairy products because (you know the boy will love cheese!) it would greatly expand his menu options. His in office "challenge" will be on May 31st...we will keep you posted.

In other fun news, a friend of ours captured our two cuties in some sweet Springtime photos:
ALL PHOTOS BELOW CREDITED TO CHERI RITTER PHOTOGRAPHY

I nearly cry every time that I look through these pictures. Love our kiddos so much. The Lord has been so good to us.

P.S. You can check out Cheri Ritter's website and Katie Preuss' website (she did our Christmas photos) on the sidebar of our blog. They are both amazing!!

Here comes April!

First, I must share this...

This photo was taken nearly one year ago. Look at my sweet chubby little man! This photo brings up so many emotions for me:

First of all, he is just plain beautiful! Those eyes? Be still my heart!

Secondly, my heart aches when I look at this photo. At this point in his life he has already experienced so much pain and such a rough journey. And when I see this photo I also know that it was only the beginning of his traumatic journey.

And lastly, when I see this photo I see the many gifts that the Lord has given Jude and our family. It is truly miraculous that Jude is the busy little boy he is today despite all of the medical challenges he has faced!

____________________________________________________

 So, what have we been up to over the last few months? Well, we still spent a lot of time inside in isolation as we waited for the cold winter days to pass. Don't get me wrong...these two kiddos have soaked up every moment of time together. I love how their relationship is growing into a playmate stage. Jude's favorite room is Annabelle's bedroom. There are tons of cool toys and Annabelle is always game for entertaining her brother. Right now they both enjoy playing in her kitchen with all of the fake food. Usually she sets up a little picnic and they take "bites" of every item of food. Jude LOVES it!

 I can't tell you how many times I've teared up over the last several months as I watch them play together. I wished, hoped and prayed that one day these sweet kiddos would enjoy the simple joy of being in each other's company. I love watching him study Annabelle's face when she talks in her funny, squeaky baby voice. I love how she insists on giving him a hug and kiss several times during play.

 Jude has also been enjoying his time at the dinner table a little more. Over the last month he has become more and more receptive to tasting new foods. Right now his favorite foods are Ritz and saltine crackers. But he is expanding his menu to Chex cereal and Sun Chips. He is not a fan of slippery textured foods like oranges or strawberries....but he is becoming more and more receptive towards actually chewing them and swallowing them. He is still a fan of all types of beans and today he ate some chicken. We are so excited about the steps Jude is taking towards eating all of his nutrition by mouth. We are still a long ways away from being g-tube free. Right now the amount of food he is taking by mouth is not enough to sustain him so we continue to give a majority of his food via g-tube. He is still receiving part of his meals from a blended diet and we are still giving him pediatric formula as well. Our hope is that we will be formula free soon. And there is NO WAY that we could do this amazing blended diet without our Blendtec blender. This machine works wonders, you guys!! We can put ANYTHING in this blender and it makes all of the food so finely blended that it goes into his g-tube without effort. It is truly the best blender on the planet! Hands down.

This month Jude also encountered his first GI bug. No fun friends.

Mommy had it first....and poor Jude was soon after. Thankfully Annabelle and Daddy avoided it! It left our little man feeling pretty crummy and his digestive system was pretty slowed down for several days. I was totally nervous that this GI bug was going to mess up all of the progress that Jude made from an eating standpoint. But I was wrong. The boy came out of the GI bug hungry as can be! Whew!

Jude did not have any doctor appointments this month...so we've been working hard with his therapists. Jude isn't walking yet but he is a brave little cruising kiddo. He does a lot of independent standing and moving without holding on the furniture....but he's just not quite confident enough to take a few steps completely on his own. We've tried to convince him to take steps towards us but he just drops to his bottom and fusses. And one thing we've learned about Jude is that he wants to do things in his own time in his own way. So, it has to be his choice...but we know he is SO SO close to walking on his own!

We've mentioned before that we are hoping to have a little party/celebration for Jude so that many of the people who have prayed for Jude can come and finally meet our little man. At first, we thought that we'd have a party this Spring. But the more we thought about it and the more I talked with my mom....we decided that the best day to celebrate would be July 27th. Some of you who have been reading our blog for awhile now may know the story of July 27th. But for our new readers, let me give you a quick history.

On July 27, 2004 my (Rose's) baby sister was in a terrible car accident that nearly took her life. After her accident many of our family members and friends began to see rainbows. And we began to see them as ways that the Lord was telling us He was present and carrying our Rachael through the storm. For years we'd celebrated "Rachael is Alive day". Then on July 27, 2011 Brian and I went for our 20 week ultrasound for Jude. On that same day, years later, we received devastating news of Jude's diagnosis. And again...we began to see rainbows and encouragement from the Lord.

So, my mom has decided that we are claiming July 27th as our Rainbow Day! And each year we will celebrate the joys and the gifts that were given to our family on that day. We are reclaiming that painful date as a beautiful date....to share the stories of our faithful God.

So, details will follow in the coming months...stay tuned.

There are a few things coming up for Jude in the coming weeks/months....look for another blog post soon!

Photo catch up!

Hi friends,
I've finally been able to upload the photos from Jude's birthday party (way back in December)!

Here are a few pictures of Jude enjoying his 1st birthday party!

 

Our hearts were SO FULL on this day! What an amazing year with our little man.

 

Oh! The Lord has been good to us!

Waving goodbye to February

Hi friends!

Welcome to the end of February! We are thrilled that we are nearly rounding out cold/flu/RSV season! Jude's official "coming out of isolation" date is scheduled for Easter weekend!

We are excited about the end of isolation! And we are well...I guess we are also really nervous. Technically, Jude has really been in isolation since he came home from the hospital (for the first time) back in June. So, as you might expect, we are ready to share our little man with the world! But we are nervous about what the world (more like people and their germs) will share with our Jude. So, please bear with us as we ease back in to normal life again. We will still be washing our hands and sanitizing more than the average family does but we hope to get out and enjoy the joys of warm weather, friends and family! We will take it one day at a time....as usual!

So, here's what we've been up to since our last post:

- In early February we made a little trip down to MUSC to see our favorite surgeon, Dr. Hebra, and his awesome team. Jude's appointment went wonderfully and Dr. Hebra was all smiles. It is such a blessing to be on this side of such traumatic surgeries for Jude. I don't think Brian and I will ever forget the grave conversations that we had with Dr. Hebra during Jude's stay at MUSC. And it is because of those moments that a smiling Dr. Hebra makes our hearts glad. He celebrates with us!
So, according to the surgery team Jude looks great. No need for x-rays at this point because Jude looks good, feels good and is thriving! They were pleased with his size and weight gain...and also happy to hear that Jude is not throwing up anymore! (Three cheers from mommy too! More on that later) At this point, the plan is to see Dr. Hebra and the surgery team in 6 months!!!! 6 months?!?! That is by far the longest amount of time that we've been away from MUSC! Praise God for making it so!

- So, back to the throwing up. I'm not sure if I'd mentioned this on the blog or not but for several months Jude has continued to throw up every single morning in the middle of his breakfast feed. And it just broke our hearts. We tried everything....slowing the rate of his feeding pump....decreasing the volume...venting his g-tube....changing when we gave him his reflux medication......etc. And finally one night we decided to stop giving him his evening feed (we usually fed him in bed once every evening). And it WORKED. So, since that night we've stopped feeding him in bed and we've increased the volume of his daytime feeds. And it has been AMAZING to watch our little boy live a life without vomit. You have no idea how much it means to see him go through the day without throwing up. He feels SO much better.

- We've been trying out a new plan for encouraging Jude to eat with our awesome OT, Amanda! (We are SO lucky to have her) And it seems to be working. Right now we've been dropping a variety of foods on Jude's high chair tray and encouraging him to participate in family meal time with no pressure. (Before we were trying to get him to eat by  putting food into his mouth....but he hated it and would cry/spit his food out/refuse to participate.) And in the last several weeks he has made GREAT strides with getting involved with his food.
First he was just interested in touching it....then he became interested in feeding us...then he would take a tiny nibble every few days....and now he is physically tasting and trying to eat food (mostly crackers and crunchy things) at every meal. A majority of his "eating" involves putting food in his mouth...chewing...letting most of it drool out....but swallowing a little bit. And you know what? That is PROGRESS. More than we've EVER had before. And we are THRILLED and THANKFUL. And EXCITED! And we'd love your prayers for more steps towards oral feeds. We know Jude will get rid of his g-tube one day with the Lord's help.

- In more digestive news: We've officially started introducing Jude to real foods through his g-tube. Preparing food in a blender and feeding it through a g-tube is often called a blended diet or BD. In the last month or so we started adding a little baby food to Jude's boluses of water to expose him to real foods and to see if he had any allergies. After that, we started blending food in our Blendtec blender (which is A-mazing....another post on that coming soon) and giving a little bit to him at each meal. It has gone beautifully and we are thrilled that his digestive system is enjoying real food! (And his nutritionist is on board with our plan! Whoopee!!!)  I'm convinced that he can taste the goodness of real food just a tiny bit in his stomach. And I think the BD has someone given him a greater desire to taste real food. I know that sounds crazy...but I really think it is helping.

- Jude got a little cold (first one this season) that lasted a little more than a week. We were thankful that it did not travel to his lungs and that it did not turn into anything major!

- Jude isn't walking yet...but he is SO SO close! His PT Kacie is phenomenal and Jude loves her! He has simply "taken off" in the last month or so with his physical abilities. We are so proud of him and certain that he will be walking soon!

Thank you for your continued prayers for Jude. We continue to worry about re-herniation and bowel obstructions (both are still possible) but we are going to live, celebrate and soak up the beauty, love and joy that the Lord has given us. Brian and I were talking this evening and we realized that Jude is about to pass another milestone. Soon he will have been out of the hospital longer than he was in the hospital. Praise God for his good works in our son's life. What a journey!