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.

Wednesday, April 24, 2013

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!!

Tuesday, March 26, 2013

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!

Monday, February 25, 2013

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!

Monday, January 28, 2013

Family photos

Hi again!

HERE are a few family photos that a friend of ours (the amazing Katie Preuss of Seek Joy Photography!) took to celebrate our homecoming.

We LOVE these photos and I am certain that we will all cherish them forever. There are not words to describe how wonderful it is that she was able to capture the joy of being all together in our little home.

Many, many thanks to Katie for giving us this gift.

Audiology update

Hi friends,
Just wanted to give you all a quick update about Jude's recent appointment with audiology.

Everything went really well and at this point Jude doesn't seem to have any hearing loss. We are thankful for such good results. Jude will continue to be followed by audiology until he is school aged. The reason for him being followed for several years is because being placed on ECMO can result in late onset hearing loss. So please join us in continuing to pray for happy. healthy ears!

I've got something new to ask all of you to pray for. Since Jude has been in isolation we've been taking him to church. We arrive early to get seats off to the side by ourselves and we leave early (after communion) to avoid Jude being touched by all of the dear people who love him (but might have a cold or the flu). But the last two Sundays have been difficult for us. You see, Jude wants to talk and move these days...and that makes it really hard for us to keep him in the sanctuary during church. And we have been leaving the sanctuary but these days Jude just squirms and cries because he just wants to get down and crawl. But he can't. Just too much of a risk of picking up germs on the floor during these winter months. So, yesterday Brian and I decided that it was time for us to start taking turns attending church. Each Sunday one of us will take Annabelle to church while the other stays home with Jude. It was a really hard choice....but we know it is best for Jude. It's hard for us because we already feel so disconnected during this isolation period. But our hearts are sad about not being able to worship together. We know that it is just a season but it is still hard. Will you pray for us?

One day our little man will be able to join all his little buddies at church in the nursery...but until that day he's gotta stay home and stay healthy. Oh Spring....come quickly!!!!
A video of Jude crawling down our hallway with Annabelle. I apologize that it is a little dark....not really sure how to lighten it up.

video

Isn't this AMAZING! He is even faster now...this kiddo loves to MOVE!

Photo update

 Just my handsome, cloth diapered, blue eyed boy
 This is Jude in his walker that he LOVED for awhile (now he is too busy trying to cruise on furniture). This picture brings me such joy. My two sweet kiddos enjoying life together. Making a mess and loving every moment of it!
 Jude looking sweet in his high chair. I think on this day he was playing in spaghetti.
 Our happy little gingerbread house builder. This kiddo LOVED Christmas this year!
 The first picture of Jude standing in his crib. This is the first time he did it! Love his sleepy eyes.
 Two sweet brother and sister Christmas photos.

Jude's favorite toy right now. He is pulling up ALL THE TIME!
 
I am sad to say that we are without photos of Jude's 1st birthday party. My mom took photos for us and they were on our computer before "the crash". But for some reason they disappeared when the computer was being restored. I hope to have them reloaded the next time I see my mom.


Monday, January 21, 2013

It has been awhile...

Hi friends,

It has been so long since I've blogged that I am not even sure where to start!

Jude has been a busy boy and he is certainly keeping us busy too!

Let's go with some bullet points to start "catching up":

- Jude started crawling! He started crawling right around Christmas and hasn't slowed down since! We honestly did not expect him to meet this milestone this early. We are blown away by this determined little man! Right now his favorite thing to do is crawl into Annabelle's room and get into her toys. And she welcomes him with joy (most days)!

- A week or so after he started crawling he started pulling up in his crib! Then he slowly built up enough confidence to pull up on furniture. At this point we can count on him to pull up on anything and everything. He has NO fear! He is such a busy little man and it is hard to keep up with him! In recent days he has started pulling up and holding on to the furniture with just one hand. We are so proud of him and so thankful for the Lord's work in Jude's physical abilities!

- Jude is now seeing several local specialist. He is still being followed by Jude's surgeon, Dr. Hebra, (bless that man!) and his team (bless them too!) and we will continue to visit him for all of Jude's follow up surgical needs. Currently Jude is seeing physicians from the following specialities: Pulmonology, Neurology, Allergy, Audiology, Ophthalmology, Gastroenterology, Developmental Pediatrics and he is followed by the surgery team here for management of his g-tube. He saw a local cardiologist but he was released from his care because Jude has no signs of pulmonary hypertension! Yes, you read that right....that beast of pulmonary hypertension is GONE. Praises all around for the Lord making it so!

- So, here is the scoop on Pulmonology: Jude's docs are happy with how his little lungs are handling life right now. They stressed to us the importance of trying to keep our little guy well during the cold/flu months and encouraged us to keep him out of the public eye until Spring. They simply want to give Jude's lungs more time to grow (especially that little left one) and rise to the respiratory challenges ahead. Many of you have asked, "well, isn't it better to expose him to germs/illness so that he can build immunities?" The answer is "yes"....but the better answer is "yes, when his lungs are stronger and capable of handling a respiratory illness." Thus far Jude has remained healthy and feel from illness through cold/flu season (and all of us have too....except for a tiny cold for Annabelle). Will you pray for continued good health for all of us? To be honest this flu season has us really freaked out. We know many people who had flu shots but still got the flu....and we just don't feel quite are protected as we'd like to be.

- Neurology: Jude recently had a sedated MRI to get a better look at Jude's brain. First of all, thank you to all of you who were praying for this procedure. We were so worried about our little guy being sedated and we were also told that there was a small chance that he would need to be intubated for the procedure. Thankfully there was no need to intubate Jude and he handled the MRI beautifully. In the past Jude has only had head ultrasounds. As mentioned before, Jude has what is called ventriculomegaly. And as we've shared before ventriculomegaly can lead to hydrocephalus. If a child has hydrocephalus it can require brain surgery and placement of a shunt. The main reason for Jude's MRI was to get a look at Jude's ventriculomegaly to make sure that it was not becoming hydrocephalus. Thankfully the results revealed that Jude does not have hydrocephalus. We also learned more about the impact of Jude's complicated medical course on his brain. It is quite hard to explain, so if you'd like to know more please feel to shoot us an email or ask us in person.

- Allergy: So, not long after we moved back home I started trying to get Jude to taste some strawberry yogurt. After his first taste test we noticed that he has a splotchy rash on his face. I worried at first that he was allergic to strawberries. But after trying plain vanilla yogurt the next time I began to think we might be facing a milk allergy (as suspected many, many months ago in the NICU). What struck me as strange was the fact that he did not have any GI reactions. So, for the next several days I would smear little bits of dairy on his face to look for a reaction and sure enough....the rash would appear. So, I spoke with our awesome pediatrician and we got a referral to an allergist. And sure enough, our boy has a dairy allergy. At this point it is not a huge concern because...well....the kiddo isn't really eating much by mouth. But when he does we will have to figure out a non-dairy diet for our little man.

- Audiology: We haven't seen the docs to check on Jude's hearing (we actually go Wednesday) yet. But at this point we don't feel concerned about his hearing. If he has hearing loss it must be very mild. In the past Jude has passed his hearing tests with flying colors. However, we will have Jude's hearing checked for several more years because ECMO can cause late onset hearing loss. And since Jude was on ECMO for 23 days hearing loss is certainly on our radar. Will you join us in praying for this upcoming appointment? We are also thankful that the doctor we will be seeing is one of our dear friends!

- Ophthalmology: Jude has mild strabismus in both of his eyes (learn more HERE). At this point his doctor does not think that Jude needs surgery or patching. We have a follow up visit in 4 months to evaluate how his eyes are doing. (We'd love to hear from other families who have children with strabismus about how their child progressed with this diagnosis)

- GI: Jude is still g-tube fed. When he turned one year old he was switched from infant formula to pediatric formula. Currently he receives 4 feeds a day and 3 60cc boluses of water. He is a big boy weighing in at 24 pounds and he is currently wearing 24 month clothing. We are certainly thankful for his size and growth. Many CDH kiddos struggle with weight (although most of them don't have g-tubes to help them along). At the end of next month we will be meeting with a nutritionist to discuss Jude's future nutritional needs. I am hoping to discuss switching Jude to a blended diet with our new nutritionist. I feel very drawn to giving Jude real food blended to meet his nutritional needs and I feel like it could greatly benefit him in many ways. Will you pray for my research and preparation for this upcoming appointment?

- Developmental Pediatrics: At this appointment we discovered that Jude is now functioning at a 10-12 month old level developmentally. (He is 13 months old) Not bad for a kiddo who spent the first 6.5 months of his life in a hospital! My sweet boy is kicking some booty!

- Feeding: Jude is still not eating by mouth. BUT! He is making little baby steps towards filling his tummy via his mouth. A few weeks ago Jude had a swallow study completed to make sure that everything was working correctly from a mechanical standpoint. Our awesome OT wanted to make sure that Jude was capable of swallowing and that there were no muscular difficulties, etc. After a very traumatic swallow study (imagine a screaming baby with barium all over him being force to swallow, a.k.a his greatest fear and a nearly in tears mommy desperate for answers) we discovered that Jude is FULLY capable of swallowing. Everything looked normal. So, at this point our challenge is to get our little guy willing to eat. He is physically capable he just has to decide that he wants to. These last few weeks we have been working to reward Jude when he swallows his food and we have been encouraging happy table/food time during our family meals. Jude always plays with his food, spoon, cup and bowl while watching all of us chew and swallow our food. Recently, he has taken to nibbling on a few types of food and we are so excited about his progress. It will be a long, long journey but our OT assures us that one day Jude will eat. Until that day, pray for our little boy! We are so thankful for your prayers!!

So, what else has Jude been up to?
- Celebrating his 1st birthday! He had an awesome superhero party surrounded by our closest friends and family. Jude played with his cake a little bit and tasted a little bit of the icing on his lips. And we were THRILLED by the donations that were given to Cross Bridge Ministries in honor of Jude! Thank you!!!!
- Living in isolation since early November. Jude mostly stays home (as do we) to limit his exposure to the outside world. This cold/flu season seems especially serious so we've tried to be very thoughtful about what Jude might be exposed to. We go to church (arrive early to get a few seats all to ourselves and leave early) and to the grocery store (cart is scrubbed, cart cover placed and hands sanitized multiple times) and an occasional dinner out (table and highchair scrubbed, chair cover placed and hands sanitized multiple times) but that is ALL. There are certainly times when we all get a little stir crazy but we remedy that with a walk, a drive or at fun at home activity.
- Soaking up Christmas and time with family. We had a nice Christmas meal with Brian's family and a quiet Christmas eve and Christmas day at home as a family of four. I'm not sure that I've ever savored a Christmas this much before. And Jude (and all of us of course) traveled to Florence for a visit with my (Rose's) family. Jude loved his first "visit" to Nana Beth and Papa Jack's!
- A lot of therapy appointments (we seriously LOVE our OT and PT)!
- Playing with Annabelle and making her laugh as much as possible!
- A lot of snuggles and kisses from Mommy and Daddy (when he can stand to be still)!

And now that I am at the end of this blog post I was planning to post pictures of the last month or so....but I just tried to and it appears that blogger has changed their settings for posting pictures and I cannot figure out how to load my photos! Ug! Frustrating.

I promise to try to tackle this problem tomorrow so that I can share some sweet Jude photos with all of you!

As always, we covet your prayers for Jude. We are so thankful for your desire to know about him and how he is progressing. We are thrilled with all that the Lord is doing in Jude's life and ours.

God bless you all!





It is coming!

We FINALLY have one of our computers back (the other is dead) and I'm working to get a blog update up tonight. It will likely be a LOOOONG one. There is so much to share.