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!

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 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!

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.

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.