Friday, July 27, 2012

July 27, 2011 - July 27, 2012

Hi friends,
Today marks the one year anniversary of the day we found out that Jude had a congenital diaphragmatic hernia.

What a year!

Thank you for following Jude's story and praying for our family during this journey.

We have been reflecting on our experiences over the last year and we are looking forward to revealing our thoughts with all of you by writing a blog each to share with all of you in the coming week. 

God bless you all!

Saturday, July 21, 2012

Jude during the month of July

 Jude HATES baths! But he gets super spunky and happy when he is naked and wrapped up in his towel. Brian snapped this shot of Jude the other night when he was wiggling and smiling. LOVE HIM!
 This is Jude (looking a little shell-shocked) during our first public family outing. We made a quick trip to the local farmers market. We felt like this was a safe outing because we are outdoors and not in close quarters with a lot of people. We enjoyed an afternoon stroll and Annabelle enjoyed naming all of the fruits and veggies.
A few things you might notice about this picture:
1) Jude is HUGE! He is so long that he looks like a toddler sized baby in this stroller. I'm quite proud of his chucky little legs too.
2) Gotta love the patch-work tape on Jude's face to hold down the ng tube that he so desperately wants to pull out. We are still on the lookout for a better method...and I think I found one tonight! Going to try it out tomorrow! Wish us luck!
3) The giant (again toddler sized) bib around Jude's little neck. Poor guy throws up so often that he is sporting one of these throughout the day.
video
The picture and the video show Jude in action in his exersaucer. When we first brought Jude home he could not sit up at all in the exersaucer and when we stuffed blankets around him to help him sit up he simply slouched miserably and drooled a TON. But as you can see he is holding himself up pretty well now and beginning to explore the toys more and more. He is also starting to bear weight on his legs much more. We are totally thrilled with his progress!
P.S. Don't you love Annabelle poking her finger in the camera like a normal almost three year old? She is such a cutie! And did you see our awesome min-fridge in Jude's room to put all his meds and formula closer? Thanks to my parents we don't have to trek all up and down the stairs in the middle of the night and early a.m. to give Jude what he needs during those crazy hours! SO thankful for that gift!

Coming soon, pictures of Jude:
1) In his new, cool helmet!
2) Our latest find: a sleep sack that keeps Jude from pulling at his tape and ng tube while he sleeps. He looks like a big bag of potatoes!

Thursday, July 19, 2012

Trying so hard to move and eat!

Happy Thursday friends!

Rose here. Or also Jude's mommy. :)

Just wanted to stop in and give all of you a quick update (as promised!) on Jude and his life at home.

Jude continues to amaze us with his physical abilities. When we brought him home, Jude was struggling with holding himself steady in a sitting position. He was just starting to lift his head during tummy time and he was not rolling. Jude's therapist said that she thought he was about 3 months behind on his physical development because he was unable to use his body like a normal baby his age (the result of being on his back using the ventilator and in the hospital for SO long). In the last few weeks Jude has made great strides in his trunk control and he is holding himself steady in a sitting position more and more each day. He wants to sit up on his own. He is also holding his head up during tummy time and even looking around a bit during his tummy session. He is also wowing us with his new rolling skills! We are super proud of his hard word. Jude has always enjoyed physical therapy and it is obvious that he has a desire to get moving! Please join us in praying that Jude will continue to make progress in his physical development. His new physical therapist is confident that Jude will eventually catch up with his peers...it may take several months but he will get there!

I bet you want to know about his feeding abilities!

As you all know, eating by mouth is one of Jude's greatest challenges. When Jude was in the hospital, he was taking a few bites of baby food every now and then. Sadly, when we brought Jude home he seemed to regress a little bit. For the first two weeks we did not have a positive feeding practice session when we worked with Jude. We were feeling really discouraged. But in the last week Jude has been a little more accepting of the work we've been doing with him to help him learn to eat by mouth. He is tolerating more "happy mouth" activities than he was allowing in the hospitals. And today he took several mini-bites of baby food. Jude usually gags throughout our feeding sessions and often throws up...but today he did not gag or throw up!

Victory!

Please pray for Jude's eating. We worry a lot about his ability to eat and we are constantly trying to think of ways to help him find the desire to eat by mouth. Please pray for Jude's occupational therapist as she works with Jude to encourage him accept food and swallow it appropriately. We will continue to keep you updated on his progress.

Last week, we were trying out a few new things (that the GI doc suggested) to see if we could help Jude stop vomiting. Sadly, none of the new changes improved things. Things did not get better but they did not get worse! Here is a closer look:

Positive:
- Jude is gaining weight despite the fact that he throws up 2 to 6 times a day. He is rounding out at nearly 19 pounds and he is in the 90th percentile for height!
- The increase to the volume of Jude's feeds did not seem to bother Jude at all. It was a very small increase but it was a step in the right direction.

Negative:
- Jude remains on continuous feeds throughout the day. He is being fed through an ng tube 23 of 24 hours of the day.
- Jude begins throwing up around 2:30am or so each morning. Usually he gags or throws up several times for the next few hours. We aren't really sure why the mornings are so awful for his digestive system (and believe me, we've looked in to every possibility). Because of his throw up pattern Jude and  Brian and I are still not getting much sleep. Brian and I alternate nights staying in Jude's room. We are both still very tired and we'd love for Jude to get a full nights sleep without the discomfort of throwing up all morning.

Today we spoke with the GI doctor and she asked us to switch the type of formula we are using in hopes that it will slow down or stop Jude's throwing up. Please pray that this will be the answer. I don't feel convinced that the type of formula is impacting his vomiting...but like the doctors I am left scratching my head. Jude's little insides are such a mystery.
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We continue to rejoice over the fact that Jude is now at home with us. I often find myself wanting to share the news of our miracle with total strangers. I simply cannot believe that we are on this side of Jude's CDH diagnosis.

Over the last few days I've begun to reflect over the journey of the last year.

You see, on July 27th 2011 we found out that Jude was a CDH baby.

Our life looks so different from our life one year ago. Not one thing looks the same.  I hope to share some of my thoughts with all of you on the 27th about how the Lord has moved in our lives over the last year.
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I also hope to share some new pictures of Jude at home in the next few days. Right now I am typing from my mom's lap top, so I don't have any pictures available to post. I promise to try my hardest to share a few cute little man pictures with you soon!

Thursday, July 12, 2012

Brother and sister

Hi friends,
Just wanted to drop in for a quick update!

First, let me show you a cute video of Jude enjoying his big sister. I thought my heart was going to burst open with joy when I saw this little interaction.

Oh, how I wished for these moments!!!


video

 Don't you just love his little growling giggle?

And here is a SUPER HAPPY BABY! 
We had to change out Jude's ng tube yesterday so we decided to try a little bit of food by mouth while he was tube free. He did SO MUCH better than he normally does with that awful tube running down his throat.
 Here is the little champ putting some apples in his mouth with his fingers. Num num num!

The goal for the next two weeks is to make some changes that will hopefully decrease the number of times that Jude is vomiting each day.

Here is the plan for Jude for the next two weeks:
1) We increased the rate of his feeds by just a little bit (see above). The hope is that his little tummy will handle the little bit of increased volume well.
2) The GI doc increased the amount of Prilosec that Jude gets each day.
3) Stop Jude's ng feeds for one hour so that he can have a break from being fed all day. If he handles it well the hope is that he will be able to have his feeds stopped for two hours each day.

I know that these steps may not seem like much, but they are HUGE baby steps for Jude's little digestive system. Will you pray for these changes and that Jude's tummy will be a fan of the new plan?

Additionally, Jude was fitted for his helmet on Wednesday morning and it should be ready for testing in a week or so. I've been told that he will wear it 23 out of 24 hours a day.

We had quite a crazy, hectic day yesterday at MUSC but the highlight of our day was sharing our little man with the NICU team. It was so much fun to see his face light up when he saw many of his primary nurses and doctors! And of course he was thrilled to see his therapy friends too. We are SO glad to be home with our little guy...but we are also missing the awesome friends we made during Jude's 6.5 month stay. We are thankful and certain that many of them will continue to be a part of our lives!!

So, what is on our radar for the next few days and weeks?
Jude started physical therapy this week and he will have his first occupational/feeding therapy tomorrow! We are super excited about him getting the opportunity to work with these two therapists...we've heard great things about both of them!
We also have several other follow up doctor appointments in the coming weeks. Plus we stay connected with our local pediatrician.

We also wanted to thank all of you for helping our transition home go a little easier. Thank you for the many meals that were provided for our family so that we could settle in without giving a thought to "what's for dinner?" Thank you for being so understanding of our desire to keep Jude safe and as protected as possible. We promise that we are planning a BIG party in the next year to allow all of Jude's prayer friends to meet him!

Well, that is the scoop for now...until next time!

Saturday, July 7, 2012

Happy at Home

Hi friends,
I am so sorry that it has been SOOOOO long since our last blog post.

A few posts ago, I was sitting in Jude's hospital room waiting for his nurse to bring the discharge paperwork for us to sign. It seems like that was so long ago but in fact we are only about two weeks from our half-a-year stay at MUSC.

I must be honest, it is quite strange being away from the hospital. We had a little routine going while Jude was still in the hospital and once he got home it took us a little while to get into a routine. For awhile we remained overtired (a term I have come to know quite well over the last year...there is tired and there is overtired!) and eventually we are starting to be a little less tired. But still quite worn out!

Jude seems to LOVE being at home with us! He really enjoys his sister and he certainly savors his extra snuggle time with mommy and daddy. He is quite rotten already and refuses to take his afternoon nap nearly everyday because he'd rather be held. Sweet little man.

He has enjoyed being outside (when it's not over 100 degrees, right folks?) and really enjoys rolling around in his stroller.

At least a few times a day Brian and I realize, "Wait, this really happened! Our son who had a 50/50 chance of survival is now at HOME. Sleeping in HIS crib. SNUGGLING with his mommy. LAUGHING at his daddy."

The Lord is GOOD!!!!


So, what does life look like for Jude right now?

Well, Jude starts out his morning bright and early at around 4:30am with a few throw ups (usually three). It breaks our hearts that he starts his day in such a miserable way. We respond to every throw up episode because we are so worried that he will not turn his head and therefore aspirate vomit into his lungs.

Usually, he falls back asleep until around 6 or 7am and we put two of his medications in his feeding bag. Most of the time he greets us with a BIG smile (gotta capture it with my camera soon) despite his morning of throwing up. We get him dressed and start the day with his big sister!

We sit down for breakfast and Jude practices his oral activities. We give him tastes of baby food with several oral motor tools and most of the time he is receptive. Since we've been home he throws up almost every time. We get so discouraged for him when this happens. We are still waiting to hear back from the local OT (who we have heard has a lot of feeding experience) about getting Jude started with therapy. We are so nervous that he is regressing. Will you guys lift him up in prayer regarding his feeding by mouth? Nearly every healthcare professional we've encountered has expressed that they believe Jude's ability to eat by mouth will be our biggest challenge. The thought of Jude being able to take food by mouth seems nearly impossible to me right now. He has so much work to do. But I am trusting that the Lord has plans to make a way for Jude to be a healthy, well nourished little guy....no matter what the methods for his feeding may be!

After breakfast, our little man takes a morning nap and he gets three more medications in his feeding bag. Jude is usually a big fan of his morning nap so he is usually up just before lunch and yep, you guessed it...lunch means more practice with baby food and oral activities. We all sit at the table and help Jude be a part of the social experience of eating. We all make exaggerated chewing faces and say, "num num num" a lot. I am pretty sure that he thinks we are a bunch of fools because of the giant grin on his face.

After another nap (and four more medications), we usually help him get in his work out (i.e. physical therapy exercises) and he enjoys some playtime with his sister (i.e. the crazy, snuggly wants to squeeze him all the time girl). Then the little guy gets a bath, some extra snuggles and he is off to bed at 6:30pm.

We usually head to bed at 10pm and give Jude his last round of medications (five more, friends) and try to get some sleep. Usually Jude wakes sometime between 2 and 3am...we are not really sure why...but he seems to think it is time to have a wild wiggle party. Literally. He wakes up and fusses a little...then he proceeds to wiggle like crazy and give his best attempts at extracting the tape on his face that holds down his ng tube. He does this EVERY. NIGHT. Makes us nuts and worries us to death that he will be successful at removing his only means of nutrition.

I guess I should explain...removing an ng tube is not small potatoes. Once removed, it has to be replaced and Jude HATES having it replaced. (Who wouldn't? Though I've never had it done, I'm quite certain I'd be pretty upset with someone shoving a tube down my nose, into my throat and resting in my stomach.) Replacing it is traumatic. Traumatic for him. For Brian. For me. Thus the reason why we worry EVERY NIGHT. Plus, I have this super fear that he will pull his ng tube out and that it will land in his mouth and continue to pump milk out, thus causing him to aspirate.
 

So, I bet you can guess what my next prayer requests are! :)
1) Prayer for management of his ng tube. It's been tough. But the little man needs it! This may sound silly, but please pray that we can find an effective way to tape his ng tube to his face. We have tried EVERYTHING and somehow it comes off at least once a day...if not several times a day. It may seems like a small worry....but it makes us a little nuts.

2) Our nerves. We are super thankful to have Jude at HOME. What a blessing to have him with us at all times...but sleep is scarce again. Mostly because of worry. Please pray for our fears and worries about Jude's throwing up and ng tube.

3) Please pray that the throwing up will go away completely and that the GI doctor (who we see on Wednesday (MUSC friends, we will be letting you know if we can swing by!) will have some answers and a plan for Jude's digestive system!

4) Please pray for Jude's oral feeding. The only way to get rid of this blasted ng tube is for Jude to eat by mouth. He has a lot of work to do and a long road ahead. Please pray that Jude will be receptive to all the work we do with him to help him learn to eat by mouth.

I know you've all been waiting for a few pictures of Jude at home! Here is one of our favorites...I hope to post more this week!

Pictures of Jude's MUSC exit!

Hi friends, 
Just wanted to share a few fun photos of Jude's last few days at MUSC. He was LOVED on so well by so many awesome people! We miss you all!
 Jude and one of his sweet primary nurses, Sarah!!

 Happy to be heading home!
 Jude's going home banner from his NICU primary nurses!
They are all so proud of him!