Reflections on this birthday eve

Good evening,
Just wanted to share a few thoughts that are filling my head this evening.

As I ran through the nightly routine (Daddy is working tonight) with Jude and Annabelle I reflected on just where I was the night of December 5, 2011.

Our parents arrived in Charleston and wanted to take Brian and I out to dinner before the big day. I was craving hush puppies (and was as big as a house) so my father-in-law was determined to find some for me. We ended up at a a seafood restaurant on Shem Creek and tried our hardest to keep our heads up knowing what the next day may look like.

Looking back it was such a frightening time for Brian and I. I am quite confident that we did a TON of research about CDH but I now know that we couldn't even imagine the beast of a fight that our sweet boy (and our family) would face. I remember bringing my fork to my mouth that night but I think my head was blank. I just couldn't think. I did not want to face it. I wanted Jude to stay in my tummy forever. Safe.

I don't remember sleeping that night either. I know I did. I think the good Lord just carried Brian and I through that night.

Tomorrow is such a big day that I don't have adequate words to express the many thoughts and feelings that I have about Jude's 1st birthday. I am thankful and overwhelmed by the grace and love that the Lord has shown us over this last year. But my heart also weeps for the families who journeyed this CDH battle with us and held their sweet babies as they went to Jesus.  It is so hard for me to grasp the Lord's plans for each little person that he brings into this world.

What a gift to share this last year with Jude.

One little known fact (and fun aspect) about our journey with Jude in the NICU and MUSC is that we would get cupcakes each time that Jude had a good day....a victory! (Of course in those days I was pumping  breast milk like crazy and burning some MAJOR calories!) So, tomorrow we are planning to enjoy a few cupcakes to celebrate Jude's first year! I'm hoping that Jude will enjoy a little bit of the icing or at least play with the cupcake a little!

Will you celebrate with us? Cupcakes all around!

Birthday coming up!

Can you believe that in a little over a week Jude will be one year old?!?!? (December 6th!)

I'm saving up for a big blog post to celebrate this AMAZING milestone with all of you!

But a few of you have asked what Jude needs for his birthday and honestly our sweet boy has been showered with so many gifts that he does not have a need for toys or clothes. He (and we) are so blessed! So, no gifts please.

BUT!
We also know that there are other families who are struggling right now. They have sick children at MUSC in Charleston and they are exhausted financially, emotionally and physically. We've been there and know how hard it is...especially during the holiday season. And we are asking that Jude's family and friends to make donations to CrossBridge Ministries in Jude's honor instead of birthday gifts.

CrossBridge cared for us and loved on us in so many ways. We knew we could ALWAYS count on them. Here are just a few of the ways that they took care of us during Jude's stay at MUSC:

They provided many, many meals for our family.
They gave us meal tickets to help us eat for free in the MUSC cafeteria.
They gave us gas cards to make sure that Brian could travel back and forth to work.
They gave us a home to live in rent and bill FREE for Jude's entire hospital stay. (6.5 months)
They provided a way for Annabelle to go to pre-school tuition free while Jude was in the hospital.
They gave Annabelle Christmas presents.
They watched Annabelle so that Brian could take me to the hospital when I was terribly sick.
They watched Annabelle so that Brian and I could have a rare date night.
They PRAYED without CEASING for our Jude. 
And countless other ways.

This list alone convinces me that I will ALWAYS give back to CrossBridge. They keep families afloat when they feel like there is no hope.

Will you consider making a donation to CrossBridge in honor of Jude this year? I promise you that your gift will touch lives. There is no question that this ministry is showing the love of Christ to families who are hurting.

If you are interested in donating, you can mail your check to:
CrossBridge Family Ministries, Inc.
1177 Gregorie Ferry Road
Suite 101
Mount Pleasant S.C. 29466

Or you can visit their website and choose the "GIVE" menu item.
Cross-bridge.org

And if you have more questions, please let me know! just.enough.for.the.journey@gmail.com

Please pray for Sunni

Hi friends,

My heart is aching for a sweet CDH baby and her family. In recent months I learned about the upcoming birth of Sunni. Her parents and family worried and prepared for her arrival.

Sunni was born a little more than a month ago and she has proven to be quite the little fighter! Right now she is facing some very difficult challenges and surgery is on the horizon. And in recent days she started having seizures.

Please pray for Sunni and her family. I know they are so weary from all the worry and bad news. Please pray for complete healing for Sunni. Pray Sunni and her family will know that Jesus is with them. He can give them just what they need.

If you'd like to follow Sunni's journey, you can follow her blog here. Please take a moment to let Sunni's parents know that you are praying. I know they will appreciate the support and encouragement.

Cold/RSV/Flu Season

Hi friends,

Now that we are in cold/flu season life is going to look a little different for the Morrison family. We are SO excited to be back home and we have really enjoyed seeing so many of our dear friends. But sadly we must go into a time of a somewhat-isolation. 

You see, Jude is doing great overall. But he is still GREATLY at risk for re-hospitalization if he catches any type of respiratory illness. 

You may remember that before Jude had his first diaphragm repair surgery we talked a lot about how Jude’s left lung was significantly smaller than his right. And since his repair (and the two that followed that), Jude’s left (and right) lung has continued to grow. But it is still smaller. And both lungs were pretty beat up by being on a ventilator/oxygen for quite some time.  So, his lungs are significantly less prepared for illnesses. And we want to keep our little guy out of the hospital! 

So, from now until April we are going into “semi-hiding”. Jude won’t be getting out of the house nearly as much as he has in recent weeks. He may still venture out for the occasional visit to Target or the grocery store but his social life is going to be scaled back majorly. 

We are planning to take him to church but we will slip in early and leave early. And you’ll only find us in the back corner…away from the crowd.  

Annabelle will go still do some fun kiddo stuff…but the poor girl will get a bath as soon as she hits the front door. 

We are still open to playing outside with friends as long as the weather doesn’t get too chilly. 

Our home will become our little fortress. Since Sunday this sign has been posted on our door:

Welcome to our Home!

One of our family members is immune deficient.

Please read the following rules before entering:

v  Please do not enter if you are sick, have been sick or have been in contact with someone who is sick in the past 10 days.

v  Please do not enter if you have a cough, sneeze or sore throat. We understand that these can be related to seasonal allergies, but we hope you’ll understand that we aren’t able to take any chances.

v  All visitors must have had their flu shot.

v  When you enter, please remove your shoes and wash your hands for 2 full minutes.

v  Any children that visit must be up to date on their vaccines. Please check with us before bringing any children to visit.

Thank you for helping us protect our loved one this cold/flu season!

It’s hard for us to take a step back into isolation. We are SO excited about being back in Greenville and we want to share our little guy with all our friends. But we also know that this is only “for a season” and that it is the best thing for our little guy. We want to keep him safe and I know that all of you do too. (If someone seems sick…even just a little…we are leaving.)

Please don’t cease contact with our little family because of these new changes. We really want to continue to hear from you…via phone, text, email, facebook, Skype or FaceTime. Our ask Brian or me to go out for coffee/dinner individually. Brian and I hope to have adults (provided that those adults are healthy and well) over in the evenings after the kids go to bed for dinner and fellowship. But we are pretty much keeping our home free from kid visitors since kids are such germ-sharers. He-he! 

Want to spend some time with us but not sure how to work it out or if a certain circumstance is ok? Just ask. Please ask! We still want to be a part of your lives. And in the Spring we will CELEBRATE!!!

But most of all, will you all join us in praying for Jude (and Brian, Annabelle and me) to remain healthy through the winter months? 

Much love!

Baptism photos

Here are a few photos of Jude's baptism:

 Daddy and Jude just before church

 The "moment". Sadly, Pastor Brian's hands are blurry.

 "Mom, WHAT just happened?"

 Prayers of thanksgiving

I love this picture: Love the moment between Brian and Jude and I love the fact that little Annabelle is peeking during the prayer!

So much to say!

Hi friends!

Wow! I can't believe that nearly a month has passed since our last post! Thank you for being patient with us. I know that you are eager to hear an update on our little man.

First, I must tell you that I will have to share some of our most recent pictures with you in another post because I left my camera with a friend a few days ago. But do not worry! Pictures are coming!

So, since our last post Jude has been trucking along. He is making some progress with his physical development. He is stable with sitting and reaching while sitting. He rocks when in a crawling position and has done just a little bit of pulling up. I'm not sure if our little guy will actually crawl (Annabelle did not do much crawling either. She rolled around most of the time and then just started pulling up before walking.) and he may just go straight to cruising on furniture.

Jude is pretty much in the same spot with  his oral feeds right now. We are feeling a little "stuck" but we also know that each day...each little taste...each mealtime at the table with our family is a step in the direction towards eating by mouth. Please keep praying for our little guy's desires to eat by mouth. It WILL happen. It will be on the Lord's and Jude's timetable!

So, in other news:
A little more than three weeks ago, Brian was given the opportunity to return as an employee to the place where he worked before (and for quite awhile after) Jude was born. We were so excited that the Lord opened the door for a way to return back to our home in Greenville and for Brian to return to work with a wonderful group of people.

But we were also sad to be leaving my (Rose's) family in Florence. Nana and Papa Jack (and all our kiddos Aunts, Uncle, cousins and Gee Gee) had become such a special and close part of all of our lives. We clearly know that the Lord completely ordained for us to be back in Florence for the last several months of our journey. There is simply no way that we could have made it through without their direct love and support.  What an amazing blessing it was to be surrounded by family who have always cheered us on (and prayed without ceasing).

But the longing to be "home" in Greenville never truly left our hearts. You see, when we were pregnant with Jude (and for most of his hospital stay) we had always envisioned bringing our son back to our little house. We imagined introducing him to our neighbors, bringing him to our community group, showing him off to Brian's co-workers, having him loved on by my MOPS buddies, sharing him with our church friends....but the Lord's plan looked different than ours. And Florence was the right and good place to be after Jude's discharge from the hospital. And again it was the right and good place to be when Jude had to be re-hospitalized for his 3rd reherniation. The Lord's mighty hand was certainly leading us *exactly* where He knew was best.

So, when given the opportunity to return to Greenville (and with Jude's health improving every day) we began talking about the possibility of returning. We prayed. And talked. And prayed and talked some more. We shared our thoughts with my parents and siblings...and asked for their prayers too. We asked our closest friends to join us in praying too. And the Lord opened the door for us to return. And, our house had not sold!

Brian interviewed for his now current job and within days they offered him the position. We moved back into our little home on a Saturday and Brian started work on Monday. It was quick. But it was so good.

Brian and I continue to have moments of overwhelming praise and awe over the journey for our family and Jude over the many months that have passed since Jude's diagnosis. Our faces are continuously covered in tears of joy during little moments spent back in Greenville...at home...

Watching our children play together. In Jude's room. Jude's room, where we weren't sure he would ever be.

Lying in bed remembering the nights spent in our bed with tears and prayer. Over our son's life. Who is now sleeping in his crib. Right down the hall.

Sitting at our table in the kitchen. Enjoying a meal provided by our closest friends. Who prayed daily. Sometimes hourly.

Seeing the joy and tears of people who have loved Jude from the moment they heard about him. Watching their eyes as they see themselves the miracle the Lord has given all of us.

And lastly, baptizing Jude at our church in Greenville...
One Sunday after we were given the news of Jude's life threatening diagnosis there was a group of babies being baptized in service. Brian and I held hands and sobbed through the baptisms. (I hope the parents of those children don't remember our crying. How awful of us!) We wanted so badly for the Lord to spare Jude's life and provide a way for our son to be baptized and loved on by our home church. We prayed consistently that the Lord would answer our prayers to have our son baptized in front of our church family and friends.

And this past Sunday, the Lord answered our prayers. A-men! What an amazing day!

My heart is still so FULL from that day. The Lord is good. Praise him forever. I am so thankful that he heard our prayers and gave us the desires of our hearts.

(I have pictures, but they are on my camera....I will post them as soon as I can!)

_____________________

Since we've been home Jude started throwing up a little bit. Just a tiny vomit every few days. But it was enough to scare us! 

We thought that Jude should be unable to throw up because he had a Nissen. So, we were totally freaked out that something big was wrong again. We've been so nervous for our little guy but he seems perfectly happy and normal despite the occasional vomit. He hasn't been showing any signs that anything else is bothering him.

So, yesterday I took Jude down to MUSC for his 2nd follow up appointment with Dr. Hebra and the surgery team. We had an x-ray completed before the appointment to check on the status of Jude's diaphragm.

My sweet Mama tagged along to the appointment with Jude and I so that I'd have some extra help (and so that she could catch me when I fainted in the event that we got more bad news). We had an overnight stay and celebrated my upcoming birthday with a nice dinner and a little shopping. I'm so lucky to have my mom!

Anywho...

Doctor Hebra walked into the exam room and told us that Jude's x-ray looked great. "In fact" he said, "it looks better than the last one!"

Wow! What wonderful news! I almost did not believe him!

We also talked about Jude's occasional vomiting and  Dr. Hebra and the surgery team explained that sometimes kid's reflux is so severe that the Nissen alone will not totally resolve it. Over the last several months the hope was that Jude could be free of reflux medication but it appears that Jude is one of those kiddos who need a little extra medication to manage their reflux despite having a Nissen. Things should hopefully improve even more as he grows and gets moving as a toddler.

So, in the next few days Jude will start a new medication to help manage the reflux that is hanging on. We will continue with the medication for 3 weeks and if the vomiting continues then we will add another medication. Please pray that things improve!

Right now the plan is to see Dr. Hebra in three months (unless something happens) and at this point there will be no reason to do an x-ray before our appointment. Please join us in praying that Jude's patch will continue to hold and that his scar tissue will form and create a strong hearty faux-diaphragm that will hold for years and years to come.

Thank you for continuing to remember Jude in your prayers. We are so thankful that so many of you have continued this journey with our family. It is so hard to believe that in a month Jude will be 1 year old! We wish that all of you could celebrate with us! But since it is cold/flu season we will be limiting our celebration to family. However, please plan on joining us in the Spring for a celebration. We want you all to have the opportunity to meet the little miracle you've been praying for!

Speaking of cold/flu season...my next blog post will tell you all about how Jude (and our family) will be spending the winter months. Please pray for us during the next several months of isolation.

And finally, a few pictures of Jude and Annabelle celebrating Halloween in our neighborhood! Happy Halloween from the princess and her frog prince!

Jude has been busy!

Hello!

As I indicated in the title of this blog, Jude has been a busy boy!

The picture above is an example of the many ways that Annabelle shows her love for her sweet baby brother. He LOVED it!

There is quite a lot to share so I am going to stick to bullet points. Bear with me...

• We made a trip to MUSC on Monday (of last week) for Jude's appointment with the development pediatrician at the high risk clinic. Jude was evaluated by the therapists and doctors to determine where they felt he was developmentally in several areas. As a side note, we have quickly learned that Jude has a serious case of "white coat syndrome". If you put him in a room with crinkly paper on the patient table and *anyone* with a white coat on he is in full meltdown mode. But really, who can blame the little guy? I mean, seriously!
• So, let's jump in on the results of his evaluation: Feeding? Jude is extremely delayed in this area (yup, we are already quite aware of this). However, the doctors gave us a big pat on the back for all our attempts. We are doing all the right things to encourage Jude to eat....he's just gotta want to eat. We discussed the possibility of feeding "boot camp" for Jude in Atlanta but we are all in agreement that this is something that we should re-visit at a later date. 
• Speech? Jude is delayed in this area too but is making great strides towards improving. Since our appointment Jude has started babbling even more and even said "ma-ma" this weekend! We are feeling encouraged and hopeful that he just needs a little extra time to catch up and eventually he will be right on track. He will be evaluated by a new home speech therapist on Thursday. I am really curious about what her thoughts will be. More to come on that...
• Physical development? Jude is behind on this area by a few months. He is getting much more stable with his unassisted sitting. He is reaching and leaning to grab objects. He is starting to spend more and more time on his hands and knees and this afternoon he gave the slightest hint towards lifting his hand towards crawling. I am quite certain that Jude *want* to get moving. It's just that he has to get his toddler sized (more on that later) body to cooperate with him. Our PT says that Jude's physical development is a lot like an overweight person's on the Biggest Loser. He is capable of using his body in *normal* ways it's just that moving his big body requires so much more energy and he has to build muscles to accommodate his frame.
• Fine motor skills? Completely on track. No delays. Praise God!
• Problem solving skills? Completely on track and even a little advanced! A-mazing. I seriously shed a few tears when Jude's doctor shared this with us. I just kept thinking "this should not be". I mean, seriously, Jude was on ECMO for 23 days. ECMO is so dangerous (and so amazing at the same time) and can create so many development delays. I just feel immensely thankful that he is "problem solving" so well despite his scary journey. 
• Ok, back to Jude's size! Jude is weighing in at a whopping 23lbs and is hanging out around the 89th percentile in weight, height and head circumference. As you can imagine my arms are getting pretty strong these days. 
• The docs also gave us permission to take Jude out a little more. We have been SO cautious about taking our little guy out in public. I mean, he has hardly been out AT ALL. (I'm talking no grocery store, church, restaurants, etc.) The boy pretty much only went to the doctor's office. But Jude's doctors said that he is "hearty" enough to start venturing out into public life....and it is good for him developmentally. They encouraged us to continue to be cautious and make smart choices about who he is around and where we take him. So, you may see us out with Jude. But please help us keep these guidelines for Jude's safety. If you are sick or have been sick in the last 3 days please stay away. Even if you only think it is allergies, please avoid contact with our little man. If someone in your household is ill we'd prefer that you'd keep your distance too. We will likely bring Jude to church with us but we will keep him out of nursery. And please don't take offense if we leave an event or head out the door if you or someone in attendance appears sick.  And please help us keep any and all tummy bugs far, far away from our household. Please forgive my serious tone. But I know that all of you are in agreement that we've gotta keep Jude healthy as much as possible. We also know that Jude *is* going to get sick at some point. But we want to do our best to avoid this until he is a little older and his lungs are much stronger. He will need to build immunities but our desire is to do this when his lungs are bigger and stronger. So, if you see us out at Target please say hello and greet our little guy. We want you to share in the Lord's miracle...just hide from us if you are feeling "under the weather". 
• Jude also got a follow up ultra sound to check on the status of his ventriculomegaly. The ultrasound showed no changes to the fluid levels in his brain and currently his condition remains stable. This is exactly what we wanted to hear! We will have a follow up visit with neurology to continue to monitor this but it has remained stable since his first hospital stay!
• Last Wednesday we also had a follow up visit with the surgery team. Before the appointment Jude and I (yes, I made the journey to MUSC *alone* with Jude. Big pat on the back for my solo mommy skills) made a trip to radiology for an x-ray of his chest/abdomen. Then we took the elevator up to the surgery clinic and met with several doctors and of course, Dr. Hebra (our hero!). Dr. Hebra joked that he did not want to look at the x-ray because he was scared of what he would find. But alas, he was wrong! Everything was just where it needed to be in Jude's little body! PRAISE GOD! His artificial  left diaphragm is slightly higher than his right, but this has always been the case and will continue to be. SUCH good news to know that everything is as it should be!
• I talked with the surgery team about Jude's retching/gagging and they said that it is perfectly normal for his to still do this. They said to try to *burp* his g-tube more often. The only complication that we discussed is that sometimes retching/gagging can cause the Nissen to slowly undo itself. We are wishing and hoping and praying that this will not be the case with Jude!
• Also new from the surgery appointment: Jude is no longer on Elecare...he has switched to Alimentum formula! We met with the nutritionist from the surgery team and we are in agreement that we both think that Jude's problem was not with digesting his formula. The problem was that he needed a Nissen. So, we decided to try Jude on Alimentum for a month and after that we will try regular formula! Just one more step in the right direction! And so far so good!
• We will have another follow up appointment with surgery in a month, so please keep praying for a healthy artificial left diaphragm and a happy digestive system. After that appointment Jude will be followed primarily by GI from that point on unless something crazy happens.
• In other news, Jude is finished wearing his helmet!! Woo Hoo! Yep! We are quite proud of his cute little round head. It filled out nicely and he is a little less sweaty (and stinky) now that the blue hat is gone! Yippee!

 That is all for now, folks. I hope I did not miss anything. It is getting harder and harder to keep on track with the blog, forgive me. We want to keep you all posted on our little man. Thank you for praying!

Coming soon

Hi friends!

Just wanted to let you know that Jude had two follow up appointments at MUSC and everything went really well!

My plan is to do a blog update in the next few days to tell you about all the good news we received. Keep an eye out!

But for now we are packing our bags and heading out soon for a long weekend away in Greenville! We are SO excited about seeing all of our friends in the upstate! Pray for lots of rest and lots of fun!

God bless!

Proof that Jude LOVES the swing!

Finally!

Hmmmm.....

Guess who promised an update on Jude yesterday and did not do it?

Yep. That would be me!

I have to admit, the day got away from me and this mommy crashed and got a good night's sleep!

But here I am with the update! And I'm quite sure that it was meant to be for me to delay an update because Jude had big plans for today!

Can you guess what happened today?????











Did you guess?

Hehe.

Jude said "DaDa!" today!

It is a given that we are not sure that he is associating the word "DaDa" with Brian just yet....but we are *thrilled* that he is starting to make those babbling sounds that kiddos his age should be doing by now!
I've not shared it much on the blog, but we've been a little concerned about Jude's speech and this gave us a BIG boost towards thinking that he will be just fine....he is just catching up from being in the hospital a whopping 6.5 months (plus 3 more weeks 1 month after discharge). So, I gotta say that we are pretty proud of our little guy's new found voice and vocabulary. Most of the time he just likes to growl (or make dinasaur noises) but this is some babbling for sure!

This week Jude dropped his iron suppliments and now he is down to one medication and one supliment! He is taking Zantac and poly-vi-sol. Not bad at all!

Overall he is feeling pretty good but I do want to ask you for prayers for Jude's retching and gagging. Because Jude has a Nissen he is unable (or it is *really* difficult) for him to vomit. But at least once a day Jude has an episode of retching and gagging. It last about a minute or so and looks pretty miserable. It breaks our hearts to see him struggle. I've been doing my *research* on this problem and seems like this is a common problem with g-tube/Nissen kiddos. Many CDH friends  and doctors have recommended "venting" Jude's g-tube to release any gas/air stuck in his tummy. And I do this several times a day...but he still has the retching problem. He even had an episode yesterday while I was venting him. So, I am a little stumped but his troubles. We plan to talk with his surgery team on Wednesday (follow up visit) about this. Will you pray with us for an answer?

From an eating standpoint Jude is taking little steps towards eating by mouth. Our newest discovery has been that Jude's refusal to eat is becoming more of a behavioral problem....or I guess the best way to put it is that he *chooses* not to eat. Physically he is totally capable of swallowing and we've witnessed him swallowing his formula (via dropper) multiple times. But he has learned that if he freaks out (i.e. screams, drools, big fat tears) then mommy or daddy will get him out of his chair and stop the feeding process. So, now we are focusing on giving him positive reinforcement when he actually *swallows* his formula. Typically he just keeps his mouth open and lets the food/formula run right out of his mouth but in the last two weeks he has started swallowing his formula. Most of the time he gets mad out of frustrating and fear of swallowing. But now we are using a reward system when he successfully swallows and the new approach seemed to work really well today! He swallowed his formula 6 times (6mls) today without freaking out and he even added a few little "DaDas" in there too! Please pray that this method continues to be successful!

Physically Jude is working really hard too. He able to sit unassisted and is getting better and better at catching himself when he starts to fall. His left side of his body is a little tight and needs some extra stretching. We suspect that he has been leaning more to the left because of the pain he has experienced from the many surgeries on the left side of his body. This has also impacted the muscles on his back on the left side of his body. He is already "balancing out" a good bit but he/we will have to continue to work hard to lengthen his muscles. Jude is also working with his PT to "army crawl". He is barely started but I can see the desire and determination in his eyes to get moving (and keep up with his sister)!

Our family life is starting to feel a little bit more *normal*. It is amazing to have our little guy not vomiting several times a day....it is amazing to be able to feed him bolus feeds only 5 times a day (instead of continuously all day long)....it is amazing to take him outside to swing and play with his sister....it is amazing put him to bed and have him sleep through the night...it is amazing to watch him laugh with his sister and light up when she is near.

My hope is that I will always appreciate and remember where our little guy has been. What an incredible and miraculous journey! The Lord is good. We are thankful for the path and journey that he has chosen for Jude and our family.

Smiles on a Sunday!

Prayers for a CDH buddy

Hi friends,
While Jude was in the hospital I met a new friend, Liz. You see, Liz was pregnant with her 2nd child. But like us, Liz and her husband Grady found out that their sweet baby girl, Lily, had CDH.

Liz and I have become friends over the last several months and we've both faced terrible days with our little CDH fighters. We've both celebrated the homecoming of our sweet kiddos too.

But Lily's journey is getting hard again. My heart is aching for the tough tests ahead of her. I know Liz and Grady are so scared and worried for their little girl.

Will all of you please join me in praying for Lily, Liz, Grady and their other sweet daughter, Izzy? I know they'd be thankful for your prayers.

Please follow their journey, HERE for updates and specifics on how to pray for Lily.

I know I can count of all of you to lift them up to our great God!

Whoa, it is September!

Hi friends,
We've been keeping busy with our two kiddos since Jude's last discharge from the hospital. And overall our little guy is feeling pretty good. (except for the cold he has been battling this week)

Proof: Sheer Joy!

It is obvious that Jude feels SO MUCH better physically and that life without an ng tube in his nose is the way to go.

Over the last couple of weeks Jude has been hard at work with physical therapy and occupational therapy. Physically he wants to work hard but his little body is still recovering from his surgery...we are sure that he will surprise us with what he is capable of in the coming weeks! He is already doing more physically than he was before surgery. (Rolling over, holding himself up in his exersaucer and pushing with this legs to try to bounce, remains happy during tummy-time, sitting unassisted for longer periods of time, reaching for items, reaching when he wants to be picked up......)

From an occupational/feeding standpoint Jude had made tons of progress but he is still not eating a lot by mouth. Before surgery Jude would barely tolerate any food in his mouth. He would gag constantly and throw up. Since surgery he chew on puffs, wagon wheels and teething biscuits...and he will allow baby food into his mouth but he is not a fan of swallowing any of it. We are quite sure that Jude has a terrible fear of swallowing food or liquids and/or allowing it to get to the back of his mouth and tongue. It is quite a challenge trying to teach a little person to swallow! We think that his swallowing fear comes from having SO MANY tubes in his throat throughout his long hospital stay.

Will you pray for Jude's eating? Will your pray for our occupational therapist as she helps us move Jude towards feeding by mouth? Will you pray for our endurance? It is so hard to watch his struggle with eating each day. From a mechanical standpoint Jude is fully capable of swallowing effectively (he had a swallow study done at MUSC and was cleared for trying to eat food by mouth) it is simply his fear and oral aversion.

I've been doing my research on CDH kids with g-tubes and when they usually start eating by mouth...and what I've discovered is that most kids seem to either eat in the first few months of life or not until they are around 3 or 4 years old. (Of course, it is a given that ALL CDH kids are different...but I wanted to get an idea of what the other CDH mommies were finding) It seems that kids feel a little more "peer-pressure" to eat like their peers around the 3 to 4 year old mark.

I'm still not sure if I find this encouraging or discouraging! But, what I do know is that I am asking the Lord to give Jude and both Brian and I the endurance to continue to try to get Jude to eat by mouth every day (3 times a day)! We will not give up!

What else have we been up to?
Here are a few things:
- Celebrated Annabelle's third birthday party by surprising her one afternoon when she got up from nap. She had a BLAST!
- Now that the weather is cooling down a bit we've been taking Jude outside a little more (when those blasted mosquitoes aren't out!) for walks with his sweet sister.
- Family nights out in the van. Since we aren't taking Jude out in public right now we've had quite a few "take-out" meals in the van to help us feel like we are "getting out" as a family.
- Brian and I has escaped for a few date nights out here and there thanks to my parents. (Oh, and on the 18th we are celebrating 8 years of marriage! Woo Hoo! Love my sweet hubby.)
- Lots and lots of sibling play time...seriously, our two kiddos can't get enough of each other and it brings such joy to our hearts.

Well, that is the scoop for now! Thank you to all of you who supported us (in many different ways) during Jude's second hospital stay. We could not have done it without you all! God bless!
 

How does this thing work?

Jude enjoying his Johnny Jump Up!

He is home again...and it took me three days to let you all know!

First off, let me say...

Jude is home!!!!

I apologize for not formally announcing it on the blog sooner. As soon as we got word from the doctors that we could take our little guy home I had the car packed. We we ready to break out of that hospital as soon as possible!

We love the folks at MUSC, but man, we'd already spent more than 200 days there.

So, I want to rewind a little bit...remember this little guy?

Cute...but not so happy. This is the way that Jude had to sleep each night before his recent surgery. Jude LOVED to try to pull his ng tube out and this was the only way to keep that blasted tube in his nose. The sweet little guy slept like this every night. I know he was miserable.
What is funny is that we took this picture to show to one of Jude's doctors to advocate for a g-tube. We had no idea that later that day we would find out that Jude had re-herniated and that Jude would begin his hard (but worth it) journey towards a g-tube (and Nissen).

So, here are a few photos of Jude's journey in the hospital (did not have the ability to upload them during Jude's stay):

Reading books to pass the time

Pre-surgery with Mommy

Pre-surgery with Daddy

Post surgery - we really did not want to see this again. But he pulled through SO QUICKLY!

My smiling boy just days after surgery!!!!

I also want to share this picture (or list) with all of you:

This is a schedule for all the medications that Jude took before surgery. After surgery and this last hospital stay he is only taking one medication, iron and infant vitamins! How incredible is that?!?! Praise God!

The last three days have been filled with balancing life with two kiddos. I'm feeding Jude every four hours (through his g-tube, over a 1 hour period). I'm also working with him on oral feeds too...at least three times a day I try to get him to eat a little baby food with his formula. He is taking more food by mouth than ever before. (We still have a long way to go) We are amazed by the progress he has made. And we are pumped about him starting up his therapies next week.

I hope to update again later this week and share some recent pictures of our little guy at home. The difference in Jude's demeanor is HUGE. He just plain feels better. Praise God for providing a way to Jude to feel like a normal little baby.

God bless you all...keep praying! 

Wowzers

Guess what folks? 

It is looking like Jude will go home tomorrow! Yippeee!!!!

We are so excited that Jude is doing so well!

They started attempting bolus feeds with Jude yesterday and get this...he is up to full feeds today and handling them beautifully! No more TPN! He is currently receiving 150ccs of formula over 30 minutes every three hours. Dang man, those are like real baby feeds! I never thought that Jude would be able to eat like this...but he is! Bye bye continuous feeds! Praise God for providing a way for Jude to have a g-tube and Nissen! We firmly believe that the conbination of the two has made all the difference for Jude's little digestive system. 

He has not thrown up (it is quite hard to with a Nissen) since surgery and his little tummy is moving formula through just as it should. How can this be?!?! I am still dancing from the good news!

In other wonderful news: Do you remember the scary beast called pulmonary hypertension from months ago?

Gone. Yep, totally resolved. 

Jude got a follow up echocardiogram a few days ago and I got word this morning that his pulmonary hypertension is totally resolved. Yahoooooo! And that medicine he was taking three times a day to combat it? Gone. No longer needed.

The Lord is good!

I guess you can tell this mommy is a little spunky. That's right, my boy is kicking butt and taking names! 

In the last few days Jude has become tube free (no more ng tube in his nose) and he no longer has to wear the little elbow guards that keep him from touching his face. Yup. And he can sleep totally hands free too. No more baby in a sack. Just a little wiggle worm trying to figure out what to do with all this freedom.

Well, I have a little more to share with you but I will save that for our next post. There is some major flooding in Charleston today and I want to beat the next rainstorm out of the hospital for a few errands. 

Keep praying and praising with us!

Here is the scoop!

Hi friends,

Jude's mommy here!

I'm hanging out with Jude in his hospital room while he takes a hearty nap. He finished up some great time with his lovely OT (Katy) an hour or so ago and therefore he is quite tired. I've got a great picture of Jude sitting on a little stool during OT that I want to share with all of you but I don't have the cord to upload my pictures. I promise to share them as soon as I can.

So, here's the scoop:
(I know that is what you are waiting for!)

- Jude is healing well and is only needing the occasional PRN dose of pain medication. We are super pleased (and so are the surgeons) with how well he is recovering.

- Last night the surgeons decided to start feeding Jude pedalite through his G-tube. They gave him a very small amount in hopes of "waking up" his little digestive system. This afternoon they will begin feeding him formula (a very small amount) through his G-tube. They will give him 15cc over 30 minutes and then check in 3 hours to see how much of the forumla moved through and was digested. This process is called checking for a residual. Please join us in praying that Jude's little stomach is up for the challenge. If the feeding goes well they will eventually increase the amount of volume that they will give Jude through his G-tube.

- Currently Jude is receiving nutrition via TPN (as explained in a previous blog post) and we would love for him to no longer require this menthod of nutrition. We'd love to go home receiving all nutriton from formula and then begin working on feeding by mouth with our sweet OT at home (Elecia). Please pray that he can go home without TPN.

- Physically Jude seems to have bounced back pretty well! He is experiencing a little bit of weakness and pain around the incision site but we feel certain that he wil quickly bounce back to his busy ways and work hard with his awesome PT (Shannon) in Florence. Since he has been in the hospital he is even showing interest in getting on all fours....maybe crawling is in our future?!?!

- My favorite part of all this awful hospital stuff? Jude hasn't thrown up AT ALL since surgery. Not once. Praise God for a successful Nissen and G-tube! This morning Jude is completely free of tubes in his nose/throat and he is no longer having to wear the elbow imobalizers to stop him from pulling the tubes out of his nose. He is just so dang handsome and cute!

- Please pray that we will get to take our little guy home soon! As much as we love the folks at MUSC we are ready to get out of here. We've spent far too much of 2012 in Charleston. We are hoping for an end of the week discharge...maybe by the weekend?

Please keep praying for healing and progress. I am amazed that we are on this side of his surgery. What a joy to know that he came through this even better than before!

Please continue to pray for our sweet daugther as she misses Brian and I. We are currently taking turns in Charleston and Florence to be with each child.

Please pray for Brian and I. We miss each other so much. I can't wait to be with him everyday again.

Please continue to pray for our house to sell...it would be wonderful to have one less thing to worry about. (And one less bill to pay)

Please pray for the family and friends who are taking care of us during this journey. It has been a long road and they are weary too!

God bless you all. Thank you for your faithfulness!

Real quick

Jude is doing well! We apologize that it has been awhile since an update. He no longer requires O2 anymore and he is healing slowly and surely! Hoping that they will start feeding him through his gtube for the first time tomorrow! Plans are to post a more detailed post tomorrow! Thank you for praying!

Extubation, or, I can breathe on my own, thank you very much. :)

Jude was just extubated! (That is to say, he was taken off his ventilator and his breathing tube was taken out.) We're super excited that he was able to get off the ventilator so quickly! He's still going to be on nasal cannulas for a little while, which will give him a little bit of extra oxygen than he would get from breathing room air, but extubation the day after surgery suggests that his lungs are in really great shape!

We'll try to post more information a little later today. Thanks for continuing to follow Jude's progress and pray for him! We're continuing to pray for a speedy recovery from surgery and that his body will, even now, begin to prepare for resuming other activities, such as feeding and digestion.

The Toughest Little Man

Our little man pulled through! Surgery is over, and everything went very well! God is good!

All three parts of Jude's surgery came off without any major problems, and he's been moved up to the pediatric intensive care unit (PICU) to begin his recovery. (He did lose some blood in the surgery, but it wasn't an excessive amount, so the team in the OR was able to bump him back up to appropriate levels with some extra blood and fluids that were made available for him.) He's still on a ventilator, but he may lose the breathing tube within the next few days. For now, he's on some drugs to manage his pain and keep him asleep until tomorrow.

Thank you all for your prayers for a successful surgery! We are very thankful that the Lord brought Jude through this challenge! Now we pray that He will likewise provide for a swift recovery for our little tough guy. :)

Update: Hernia Repair Is Going Well!

I just got a call from one of the OR nurses with a surgery update: Everything is going well! Dr. Hebra is reportedly nearing the end of the hernia repair procedure, and he's been able to accomplish everything through an abdominal incision; therefore, he won't need to cut open Jude's chest to attempt a dual approach. That's great news! Also, since the OR nurse made no mention of it during our conversation, it sounds like there was no need to remove Jude's spleen. Praise God!

Once Dr. Hebra has completed the hernia repair, the next part of the surgery will involve placement of a G-tube. Provided the G-tube procedure goes well, the final part of the surgery will be the Nissen anti-reflux procedure, which will involve the use of stitches to wrap the upper part of Jude's stomach around the end of his esophagus.

We are really encouraged and thankful for the good news we've received so far! Please continue to pray with us that the rest of the surgery goes well! More to come!

Surgery Has Begun!

Jude's status on the tracking board in the waiting room has changed, and his surgery is now in progress! We don't know exactly how long the procedure will take, but we're estimating that it will probably take at least several hours. Jude's surgeon deferred on giving us any projected time frame, but another member of the team that'll be in the OR said the surgery would be "long."

Please continue to pray with us that the Lord would carry Jude safely through the surgery. We will pass along any updates that we receive from the staff in the operating room. Thank you for your thoughts and prayers!

Update: One of the OR nurses just called, and as of 15 minutes into the surgery, everything is going well. She'll be calling us again in approximately 90 minutes to give us another update. Stay tuned!

Surgery to Begin Much Later Than Expected

Hi, folks!

So Jude's surgery was scheduled to begin at 1 pm, but the surgical case before his took much longer than expected, so he didn't even leave the surgery holding area until 3:45. As yet, we don't think that the surgery has actually begun, but we expect to get an update very soon.

We'll keep you posted!

Details on Tomorrow's Surgery

So here are a few additional details about tomorrow's surgery that weren't included in the last post:

• The surgery is scheduled to start at 1 pm. We don't know how long the surgery will be, as that will be largely dependent on exactly what Jude's surgeon finds after he's begun. The plan is to move our little man's organs back into their proper places, close the defect (i.e. the hole in Jude's diaphragm) with a patch, do an anti-reflux procedure called a Nissen fundoplication, and place a gastrostomy feeding tube (G-tube).

• The defect is believed to be smaller than the past two hernias. Today, Rose had a conversation with Jude's surgeon, Dr. Hebra. After he reminded her that Jude has very little natural diaphragmatic tissue, he went on to say that, in this case, he believes the hole that has allowed Jude's stomach to move into his chest is actually somewhat small. Generally speaking, this is good news.
  The belief is that part of the GORE-TEX patch, which was used to close the hole in Jude's diaphragm during his last hernia repair operation, has partially pulled away from the posterior side of Jude's chest / thoracic cavity. X-rays taken over the past two weeks appear to show increasing amounts of Jude's stomach in his chest. First, part of the stomach was up. Then, a majority of it was up. And now, all of it appears to be in the chest. But while Jude's stomach is up, all of his other abdominal organs are clearly still down -- that is, except for one.

• We're not exactly sure where Jude's spleen is located. This might seem a strange thing to say, but all it means is that his spleen hasn't been clearly visualized on the imaging tests that have been done recently. This fact could ultimately be insignificant, but Dr. Hebra expressed a possible concern about it when talking to Rose today.
  
  There are some blood vessels that run between the stomach and the spleen, and it would reportedly be very hard to stop the bleeding from these vessels if they were damaged. If Jude's spleen is still below his diaphragm, then it could potentially present a challenge to move Jude's stomach back down through his defect without damaging the vessels connected to the two organs. If Dr. Hebra can't move the stomach down without damaging these vessels, or if he thinks that it would be too risky to try, then it's probable he would try moving the stomach via incisions in both the abdomen and the chest. (The present game plan involves surgery through the abdomen only.)
  
  If the worst were to happen and Jude started bleeding profusely from the vessels in question, then Dr. Hebra may be forced to remove Jude's spleen completely. Pray with us that this won't be necessary!

• Jude may recover from his surgery in a little more than a week. Rose and I were a little surprised at this, particularly since Jude took so long to recover after his previous hernia repair surgeries. However, we were reminded that his recovery period is expected to be shorter because he's bigger and stronger than he was before. We know that anything can happen (and with Jude, it usually does), but the prospect of a quick recovery and subsequent discharge? Yeah, we're cool with that. :)

I think that's all the news for now, folks.

Thank you for following the story of Jude and our family. It's been a tough year since we learned about his diagnosis and a tough 8 months since his birth -- time fraught with fear and anxiety, but also many blessings and great joy.

If you feel led to do so tonight or tomorrow, please pray with us that Jude's surgery will be successful and that the Lord would show favor to him and everyone who has a part to play in his healing. Please feel free to share Jude's story and/or our request for prayer if you are inclined to do so.

Third Hernia Repair Surgery Tomorrow!

Sorry that we haven't posted an update in a few days, folks. Things have been a little busy!

So yesterday morning, we found out that Dr. Hebra, the surgeon who performed Jude's two previous hernia repair surgeries, wants to do his third hernia repair operation tomorrow (Wednesday) afternoon. In addition to addressing the recurrence of Jude's hernia, our understanding is that Dr. Hebra will also do an anti-reflux procedure called a Nissen fundoplication and place a gastrostomy feeding tube (G-tube), which goes directly into the stomach. More details about the surgery and the specific time are forthcoming, but this is what we know at the moment.

As always, we covet your prayers for Jude's health and for the wisdom and skill of the medical staff caring for him. God is good, and we know he'll carry us through this next trial.

Thanks, friends. We'll keep you posted!

And the Road Goes On...

Hi, friends. So here's the update:

Jude is staying in the hospital, and we've been moved to another unit. (For those who are interested to know, we've been moved from 7A, the Infant Care Unit, to 7C, the Intermediate Care Unit / PICU stepdown unit.)

So, Jude's hernia repair operation has been tentatively scheduled for Monday afternoon; however, the attending surgeon who's in the hospital right now indicated that the surgery could be postponed if Jude fares well for the rest of the weekend and all of his lab tests and other indicators look good. (When surgery does finally happen, we've been told it's likely that Jude will have a hernia repair operation, an anti-reflux procedure called a Nissen fundoplication, and a g-tube placement.) Also, his gastric suction tube is currently removing the bloody contents that he was vomiting this morning and decompressing his stomach. For the rest of the weekend, the medical staff will be watching him pretty closely and doing blood tests on a more regular basis to monitor his status. Update: The attending surgeon, Dr. Smith, informed us at 8 pm that Jude's labs looked very good, which may portend delyaing surgery until later in the week.

So, you may be wondering why Jude was vomiting old blood in the first place. Unfortunately, we're not really sure why. There's speculation that having several tubes put down Jude's nose over the last day or two irritated his nose and/or stomach lining and made them bleed. That's certainly possible, I guess, but Rose and I are little unsure about it. We've seen trace amounts of blood in Jude's vomit before, which was also attributed to tubes irritating the nose and/or stomach; however, what came out of Jude this morning was far more than we had ever seen before, and about 75% of it was blood (including some larger clots) with the rest being mucous and secretions.

When talking to the attending surgeon, he seemed more concerned about the possibility that the Jude's stomach was at risk for ischemia, or an insufficient supply of blood. If Jude's stomach were to become pinched or squeezed in his hernia (i.e. between his chest wall and what remains of the patch that was used to close his hernia), then blood supply could be cut off to part of his stomach, which could be potentially disastrous and result in the death of some of his stomach tissue. But, while the surgeon was concerned about ischemia, it doesn't appear that has happened. *Whew*

As you can imagine, we still covet your prayers for Jude's healing and for the wisdom for his nurses and physicians. But we also ask for prayer for our family:

We are very tired. Our lives have been turned completely upside down over the last year, and we need an extra dose of God's grace to keep going. Rose and I hate to be apart from Annabelle, and we hate it that she feels our absence and is saddened over it. (Yes, kids are resilient. And yes, she probably won't remember the troubles of this last year when she's older. But no parents want to be separated from their child intermittently for 8-9 months in the midst of very stressful circumstances or see her affected by a barrage of changes.) I've just started taking classes at a community college in Florence, and I'm slotted to start a new job on Monday (i.e. the same day that Jude's surgery could happen), so I have to go back soon, leaving Rose by herself with Jude.

We're very stretched, and we need patience and endurance that only God can provide. We can try (and have tried, occasionally) to muster those things out of our meager resources as broken, sinful people, but our only real hope for peace is on our knees. We can try to reassure ourselves that "everything will work out" just like we want, but we know all too well that God's timing and purposes rarely accord with ours, and that He may very well ordain a future for our family that, on the front end, would seem like the opposite of what we desire.

God, please give us grateful hearts to praise you for your many mercies to us over the last year: The love, encouragement, and prayers of family, friends old and new, and brothers and sisters in Christ the world over; material blessings that helped us get by when our resources would have been utterly exhausted; physical, emotional, and spiritual endurance that did not originate in us; and, most of all, for the grace and love of our Lord Jesus Christ, whose life, death, and resurrection are the foundation of our life and hope. We know that you have wrought healing in Jude's body, you have brought amazing people into our lives, and you have provided for all of our needs, but too often we use those blessings as the means to forget you. Forgive us for putting our trust and hope in things other than you -- living in this place or that, having immediate fellowship with those particular people, having this or that job, having these plans work out. Disabuse us of these idols and the ones in our lives that we don't even recognize. Please give us our daily provision to subsist as we continue to go through this difficult period of life, which feels like walking through the wilderness. Help us to remember our spiritual, mental, and emotional poverty and how, despite our wanderings, you have still given us every good thing to continue through this long walk with Jude. Help us to remember who we truly are -- broken people who need your love -- and who you are -- a merciful God who loves to bless his children, even when they use his blessings as occasions to forget him or walk away.

A New Problem, Another Day in the Hospital

Folks,

If you would, please pray for Jude today.

This morning, he started vomiting, even though he's not being fed in his tummy. At first, we thought that the feeding tube in his nose, which is used to administer a medication that can only be given orally, might have been stimulating his gag reflex and causing him to throw up. Unfortunately, the vomiting didn't stop, and then blood starting coming up. The blood was apparently old as it was a dark brown color instead of the bright red color of fresh blood. We called Jude's nurse and the docs, and they resolved to watch him and keep him until tomorrow.

An hour or two later, he started vomiting again, and he wasn't able to stop for nearly an hour. Everything that came up was bloody. An x-ray was done, and we can see that Jude's stomach or part of his bowel (we're not totally sure yet) is distended to about 3 times the size it was yesterday. The plan for now, per the attending surgeon who's been following Jude this past week, is to put another gastric suction tube down his nose and decompress his stomach/GI tract. (He's actually being taken down to radiology to have the tube placed as I'm writing this.)

If you would, please pray that the causes of the bleeding and the persistent vomiting are identified so they can be stopped. Dr. Smith, the surgeon who's in the hospital today, said that if the distention in Jude's stomach and/or bowel can't be rectified by decompression with a tube, then he may have to operate. Pray with us that God would move in a miraculous way today and bring relief and healing to our little boy.