a round of applause...

"Oh clap your hands, all you peoples!
Shout to God with the voice of triumph." 

Psalm 47:1

The month began with Baby Jude graduating to his big brother's upstairs bedroom. After a huge endeavor that was long overdue, we purchased a new bed for sister so the crib, once again, was made available. Brother John had patiently waited 10 years for this event. I'm unsure if it was the particular timing, hormonal activity, or the combined circumstances of his disabilities, but Mama didn't rest easy that night. I slept in three different places, none of which were my own bed.

 

Jude survived. John rose up early to greet little brother with cheerful smiles. It took Mama three more nights to adjust to the sudden emptiness of the pack-n-play in her bedroom.
 

Physical therapy has finally begun and Jude fusses during much of each session. He strongly disapproves of "tummy time." He prefers lying on his back to play with his toys. Unable to support himself with his arms, he's unsure of what to do. No matter how many times we place him in the correct "tummy time" position with elbows bent under his chest, they quickly find their way back to his sides. The therapist stated he may not be aware that he has them. Sigh... 

 

We work with him approximately two hours daily while therapy is generally once a week for one hour. Fourteen therapy hours per week can be taxing for Jude.

 

February 17th, Jude contracted the RSV virus. It is highly contagious and appears to be the same symptoms of a bad cold but more serious. For children under the age of one, hospitalization is usually necessary. By Friday, Jude was really worn down and having trouble taking a breath. In five degree weather, we drove to the closest ER. Jude's X-rays revealed pneumonia in both lungs and RSV was confirmed. Several hours later, after drinking all of his milk, he began to perk up so we were released to come home and instructed to bring him back if he began to turn blue. (I know??)
 

Once home, however, Jude continued to struggle. He became less engaged and unwilling to eat. Though he never turned blue, by Saturday dehydration and lethargy had set in. His pediatric doctor proved little help so we switched offices that day making phone contact with a new doctor. Once we introduced Pedialyte, he began to improve quickly. Monday morning we saw the new doctor and Jude was prescribed breathing medication.  

 

I can't say we have ever worked so tirelessly to keep a baby alive. If I had to do it again, we'd go to the Children's Hospital. RSV can be very serious for kiddos with impaired lungs or compromised immune systems. Though our other children also contracted it, their symptoms weren't as serious. 

On a brighter note...
Jude's x-rays revealed that his once, extremely impaired left lung has fully developed. This wasn't expected to happen until the age of 2, so this  is entirely remarkable!   

Our therapist recommended an eye appointment to determine if Jude's tracking was off. After seeing an ophthalmologist, it was confirmed that he did not need glasses at this time. The bridge of his nose is wider than usual giving the impression that Jude's eyes turn in upon certain angles. Learning that he would not need glasses brought an indescribable heaviness as glasses would create a "quick fix" for some of his issues if they were indeed necessary. But long term, the fact that he doesn't need glasses is very good news because it indicates that Cerebral Palsy is not impairing his eye muscles. 

Just two weeks ago, upon turning 8 months, Jude at last met another milestone. He flipped from his back to his tummy several times. Out of sheer excitement, he clapped for himself for the very first time. It was so rewarding to witness his little happy hands trying to figure it out. With the brightest smile, his left hand gently patted his right fist. It was so precious to see his little mind working correctly despite his vast physical limitations.  

In that sweet moment, I had a glimpse of how the Lord must see us. We are all impaired in more ways than we are finitely aware. In our own strength, apart from our Father's will, we are all gravely handicapped. Yet, as we learn to solely rely on Him, He showers us with a waterfall of infinite grace, allowing us to overcome our obstacles for His glory.

Jude brightens our days as he joyfully discovers with triumph the abilities he has been given. We are eager to see what the Lord has in store for him in the days ahead.  ~Jen           

               

in the morning...

 

 

"Cause me to hear thy loving kindness
 in the morning; for in thee do I trust;
cause me to know the way where in I
should walk; for I lift up my soul 
unto thee."  Psalm 143:8 

  

...so here we are on a new journey...completely separate from CDH. 

 

Upon returning home from Charlottesville, we were blessed with some much needed time to rest and soak in the sweetness of our little guy for three months. We all reflected on our "take-aways" from our time spent together enjoying Jude's first weeks in the NICU. Above all, each of us felt and experienced love from the Lord like we had never known before. Now, looking back, what a precious foundation was being established before this challenging next stage in the journey.

 

There was a hint of this facing us in the near future but only as he developed would it become apparent. Then, as it began to stare us in the face, it was time for his important follow-up neonatal visit.

 

We are currently learning that, apart from CDH, Jude suffered brain damage during his delivery and critical moments following his birth. His medical records reveal hypoxia, asphyxia, cardiogenic shock, loss of consciousness, and a severe build up of metabolic and respiratory acidosis. In addition, the intubation process failed three times and his heart rate dropped to 60, impairing the left ventricle, making an already critical situation worse. Jude suffocated.   

 

Jude's right side is mainly affected with low muscle tone throughout. He is significantly delayed in his gross and fine motor skills suggesting the condition of cerebral palsy that will require years of therapy. We've just begun.

 

Finding myself drained after each appointment, I'm discovering that His mercy is new every morning with a freshness and strength that instills peace all over. 

 

Early each day in the stillness of darkness, I awaken to the pitter patter of Jude's left leg tapping in his crib. He doesn't make much sound because, though he tries, he can't turn over or scoot. As I search for my slippers and robe to turn on a dim light, he greets me with the most delicious smile that would surely melt any mama's heart.  

 

As the realness begins to sink in that our child suffers with disabilities, I'm quickly reminded that though our health is important, we are fading from this life as soon as it begins. But our soul is eternal. I return to that assurance often because it greatly impacts my perspective as well as my responsibility in all my children's lives.       

 

The Lord has graciously loaned us a priceless gift...the life of sweet Jude. And with this gift, He has prepared a way, equipping us with every step, making us able. I am honored beyond measure to be called Jude's mommy.

 

We are reminded of David conquering the lion and the bear. Jude, by God's grace, has also  defeated a lion and bear (CDH and cardiogenic shock). Now it's time to fight the Philistine. It most assuredly gives me comfort to know the Orchestrator of such events.  ~Jen

 

 

prayers for Jude...

"You are my strength; I wait for You to rescue me,

for You, O God, are my place of safety." 

 Psalm 59:9 

Just a little update on our Jude...

On December 11th, Jude had a follow-up examination with the neonatologist at CHKD. This is a visit scheduled for all NICU babies to chart their progress and to begin any early intervention if necessary. 

 

When Jude turned 3 months,  we began to notice that his muscle strength was not progressing. I've never paid much attention to my children meeting milestones because they were always doing something new in infancy.  Unfortunately, Jude has been different.

 

We first noticed that he appears spongy. It makes for a sweet cuddler but the development of his motor skills were obviously lacking. He doesn't reach out and grab things, his head is still floppy, and his right arm and leg are lazy. He hasn't begun to turn over and tires quickly when lifting his head.

 

The nurse scored him at a 2 month level even though he was 5 1/2 months at our visit. The doctors noted hypotonia (low muscle tone) suggesting a muscle disorder or disease. I hoped for an explanation such as a slow start or major abdominal surgery to be the cause but that doesn't seem to be the case.  

 

Physical and occupational therapy are beginning in January and we already have an appointment scheduled with the neurologist.  

 

We're all just soaking in the sweetness of this little guy. 

 

We'd be grateful for your prayers, once again, for sweet Jude.  ~Jen   

 

  

rejoicing in hope....

"Rejoicing in hope, patient in tribulation, continuing steadfastly

in prayer..."  Romans 12:12

 

At three months, Jude's chunky little build is beginning to feel durable. My on-going fear of his four-inch incision suddenly reopening has finally subsided. After weeks of abscessing and working several stitches out, his incision at last has healed over.    

 

He is a delightful little guy with boundless energy and ear to ear smiles. His tiny eyes are full with inquisitive discovery. Lights, fans, siblings, and sounds all spark his attention along with familiar voices. Those baby blue eyes cross with excitement as he's jolted off-guard when his own small hand somehow, involuntarily, socks him in the eye. He's a hoot and he's precious all wrapped into one. We can't seem to get enough kisses but are grateful there's plenty to go around.  

 

This past month brought with it an abundance of mail. People from all over the country who have been praying for Jude sent us encouraging notes and testimonies. Three-hundred and sixty five cards and letters have found their way to our mailbox just this month. We do not have health insurance and have racked up over a three hundred thousand dollar NICU bill.  However, for the past nine years, we've chosen to take part in a Christian share plan called Samaritan Ministries which includes over thirty-six thousand households. Jude's need, including our lodging, has been met 100% by members around the world. It overjoys our family to daily open and read these heart-felt letters that arrive. Jude is accumulating quite a scrapbook. What a blessing!  

 

 

Jude weathered his first illness-the flu. I must admit, the fret over his questionable ability to overcome any illness impairing his lung(s) has been looming over me since the day we brought him home. He spent several nights sleeping in his swing in order to remain upright and proved to be a trooper through the discomfort of a high fever. But we are thankful he pulled through so smoothly.

 

It seems Jude's wild and wooly hair is quickly earning him a reputation. It's causing quite a fuss from the church ladies and perfect strangers while running errands. Even the gals on Facebook are commenting. With five girls who all wear barrettes, it remains a mystery to me how to tame such a nest on top of this boy's head! 

 

Prior to our journey, I searched and read many different CDH blogs  looking for answers on what to expect in the days ahead. It was discouraging, to say the least, as these babies, even those who survive, tend to not fair well overall. Now, others googling CDH from all parts of the world including Turkey, Russia, France, Ireland, Ukraine, Poland, Canada and even Israel have found and read our blog. My prayer is that with it, they will find hope. Not just in our personal outcome of this CDH journey, but in the hope and knowledge of our Lord Jesus Christ.  ~Jen

 

 

 

         

in the shadow of the almighty...

 

"Those who live in the shelter of the Most High will find rest in the shadow of the Almighty.

Thus I declare about the Lord: He alone is my refuge, my place of safety; He is my God, and I trust Him."  Psalm 91:1-2

"You're leaving?!" With tears pouring down his cheeks, astonished, he wandered out from the waiting lounge. His eyes were fixed on our departure cart, full with Jude and all of our accumulated NICU belongings. Their baby girl was born a week or so before weighing just over one pound. We had first met at the elevators after which we'd pass in the NICU hallway greeting each other quietly from time to time. We'd ask how their little one was, they'd ask about ours. Seemed like one step forward and five steps back for their baby Rilyn.

 

We passed another tiny one with family gathered close by. Mama crying while arms were wrapped all around her. Then that daddy who held his four month old baby girl, Anna, for the first time after waiting so, so long (I thought two weeks lasted forever). Though he spoke a different language, tears of joy are all the same.  And, I'll never forget the burdened new mother whose addiction was the cause of her baby boy's suffering.  The tears she shed for him...the grip she held my hand with...       

 

What about when the curtain closed? What about the families whose babies left all bundled up?

 

That's the way it was. Day after day. Familiar faces came and went. Sadness and happiness, never knowing their full story. We'll never know now, but they all cross our minds. From the dutiful nurses to the side-swiped mamas and daddies.

 

Grief, sorrow, sadness.  To witness another's suffering is uncomfortable. Sometimes you just want to sneak away, especially when it appears hopeless. Sometimes you want to know the whole story as if you can say the magic words or take it all away, or at the very least, just ease their pain for awhile.

 

That mama and daddy who we passed around 10:30 or 11:00 on our way out each night. They were always there. Always. Never knew their names but they were faithful to greet us with a smile. Night after night. They were so dedicated. They loved their boy. He was around five months old and still there. They cared for him with such devotion. And then the babies who never had a visitor. Never a familiar voice.

 

What to do with all of this? I don't know. It's just still with us. Causes us to wonder about each face in Walmart. What are their sorrows? Where is their shelter? Who is their refuge? Puts a different spin on the daily mundane knowing most everyone has their own story. From the family whose journey is an open book to those who deal with desperate inner trials. 

An important perspective, I suppose, to always consider. What do they need?  Who are they trusting?  Sometimes we simply forget. We forget to reach out to others.

 

Jude's follow-up with the surgeon went well today. We decided to be transferred to a CHKD surgeon for our future follow-ups in order to remain closer to home. Our surgeon in Charlottesville agreed and set it in place.

 

For the first year, the doctor wanted to see Jude every 3 months but said he is considered a completely healthy boy. The redness around his incision is a little upset from the sutures but should clear up soon. The bulge on the side of his belly that had me so concerned is due to the repositioning of his organs and a lack of muscle tissue that will develop over time. 

 

He's gaining well with no gastrointestinal issues. No problems with pulmonary hypertension or asthma which most CDH babies suffer from. No meds that have to be monitored.

And that's it. Such a traumatic beginning. Such blessings. And, a strengthened perspective of a stranger's need...that their rest can be found in the shadow of the Almighty.

 

As for me, I'm finally learning to say with assurance..."I trust Him."  ~Jen

            

 

 

 

treasured words of encouragement...

These are a small part of an ongoing collection of encouraging words we've received during our journey with Jude...

Dear Paul and Jenn,

How appropriately you have named this sweet little one... and may the Lord continue to give us all cause for an abundance of praise. While I know that passing through this trial hour by hour is difficult beyond expression for you, we have already seen by your own testimony great causes for praise to the Lord. We are on the road and quite busy (Alabama now, then headed to Kentucky before back home next week) but I daily check the blog and share the updates with my family. We have been and are praying much for you and for that precious little boy and the rest of the children. May the Lord continue to give you all strength and joy as you proceed forward through the coming days of recovery for Jude. Thanks to Paul for the great pictures and to Jenn for the heart felt and personal glimpses into your lives-- in some small way making it possible for us to "visit" you and to "be there" when we are physically so many miles apart. May tonight bring you rest and peace in Him and energy and hope anew for tomorrow. With great love and fervent prayer, The Clouds

 

Blessings to you and your family, especially Baby Jude.  I talked to Rita tonight for about 45 minutes and she brought me up to date on Jude's condition.  Isn't God good to have put calling her on my heart! Be assured that we join you all in prayer and thanksgiving for Jude's life.  May God guide the surgeon's hands and minds during tomorrow's surgery and calm your whole family with His blessed balm of peace.  May you all rest in His goodness, grace, and boundless love.  I have sent messages to my family and friends regarding Jude's surgery and please know that we will be in continual prayer during his surgery and recovery.  Much love to you all, Martha 

Thank you so much for keeping your prayer warriors and friends updated. Writing about such a present grief is not easy. Lord God, please be giving this family so much of Your shelter in the midst of this storm. Might Jude become strong and a powerful warrior for Your Kingdom. April Holliday

 

Very hopeful indeed. I remember preparing the house for my absence and time in NICU. Never prepared enough. Spend these few weeks doing crafts with the kids, reading, cuddling, praying together, just time together doing little things. That's how I found was the best way to prepare. Someone can always make that grocery store or Target/Walmart run for you. Enjoy your kids. Also very important. Date nights. Once twice a week now until birth. We took time even for a walk or coffee. So glad we did going into this time of NICU and homecoming time. Know we are praying and The Lord is surrounding you with support in all forms. Some you won't even know about until you are in the thick of it all. He is gracious, merciful, and cares lovingly for His own. I am here if you need me! Praying in the meantime.  Shannon Robison

Liz told me about the baby and I want you to know that my family and I are praying for all of you.  We are asking God for a supernatural healing and complete peace for you all. God Bless, Cyndy Hall

 

Good luck baby Jude, we are praying for you and your doctors. Jennifer

 

Its a long journey, but you have a true angel!! Thinking about you guys every day!! Sending lots of prayers and oxoxoxo -Jolin

It was good to see you yesterday at church. May the Lord continue to strengthen Jude for all of life ahead of him. Paul Mathews

 

Taking Jude's precious pic with me to our healing prayer service tonight! Love you all! Kristy Bailey

Jen, your God-given strength is amazing and is a true testament to His power and grace. I choke up every time I try to tell my husband updates about Jude and your family. Praying for you and missing you on this beautiful Sunday. Megan Oswald

What a precious little fellow. May The Lord's hand of mercy and grace be upon his little body for healing and health...and quick too. Mary Jalbert

 

He is precious. I am praying for him, that he astounds the doctors with a miraculous healing and recovery. Meredith Hammer

 

God bless Jude, Jennifer, Paul, Abi, Lizzie, John, Bella, Ruby and Eva Hope. Hope each day Jude will get stronger. Barbara Kubricky

 

God's grace is raining down upon you. Wow...what He is doing and is going to do! I am so glad to be a small part of this journey y'all are going through, even though I'm far away. April Holliday

We love you all from the Battles. To God be the glory for the blessing of Jude for your lives and ours! The Battles

 

We were remembering you all in prayer tonight at church. So glad we have an Almighty Father to commit you to! We'll continue to pray. Psalm 46  Jennifer Nicholes

 

Dave & I are getting ready to pray for you all. Psalm 46:10 Be still and know that I am God. The Holliday's

 

I will be praying for You Jennifer! God's loving arms are around you. Stacy Splees

 

I am so happy to hear that the surgery went so well! Thank You, God. -April  

 

Let Jude know that Macy is crying OUT LOUD on his behalf...almost all day yesterday! Maybe they made a little agreement about her doing this since she's cried more since his birth than ever before! We'll have to ask when we all get to heaven. : ) Marcella Butler

 

God is sovereign, Jen. Take your peace. Hang on to it! Christ has overcome this cruel world. Jude is safe and so are you. There is no sting. Jude is forever yours and God's no matter what happens. Love, love, love you, my sister! Marcella Butler

 

"My willingness to carry life is the revenge, the antidote, the great rebuttal of every murder, every abortion, and every genocide. I sustain humanity. Deep inside of me, life grows. I am death’s opposition."

Thanks again for the updates. I can't imagine the stress & sadness & gladness and all other emotions you all must be feeling. I know you have many prayers going up for you all & they will continue I know. Jennifer, also praying for rest & peace for you. I know your body has to heal too so take care of yourself...I know that must be hard for you to do but you must take care of yourself...Gigi Thornton

II Cor. 4 was my inspiration when I lost our baby last spring. Esp. verse 18: we look at eternal things, not temporal. God is doing something really wonderful and you will look back at this time as a precious, closer-to-Him-than-ever time in your life! I envy you in this way b/c I know HOW close He is to the broken hearted and those crying out for His courage. You are in a great place. Keep on tearing down the darkness with your praise!!!! Marcella Butler

 

Praying. I love your blog and was weeping with you over the last entry. Love you all and can't wait to see what God will do with this mighty man of God! Karen Ward

 

I have been reading your blog and praying for little Jude and all of you every day. It is wonderful to see our God at work. He is mighty. Mrs. Steinman

 

Praise God for all He has done in this baby's healing process!! I am so happy for you all & so excited that you are finally going to get to hold your precious Jude. I will continue to pray for total healing for Jude & you. Gigi Thornton

 

Praise the Lord, again and again. Jude is already fulfilling his call to bring praise to his Lord. Love him! Smell him and snuggle him for us too! I'm so excited about you getting to finally hold him. It's a dream you couldn't dare to dream, but now...thank you, Lord. Marcella

 
So glad to hear from my mom that Jude and his loving family are home. We continue to pray for his growth and development and for all the sweet caretakers at home! God bless you. Glenda Currin (Uncle Jack and Aunt Evelyn's Daughter and Grandma Rita's first cousin)

 

God is so good. I am so glad you all are home, sweet friends! And I cannot wait to meet your sweet boy! Lauren

What a journey! So glad he's doing great and you all are home. Look at those precious faces as they look at their brother. Butch Jalbert

Thinking of you all every day....praying always! I cannot wait to meet this little guy....xoxoxoxo Elizabeth Gable

 

"Paul, Jen, and Family, Helene and I have been following your family's amazing journey on your website. Jude has endured more in his few short weeks on earth than most people do in a lifetime. This has and continues to truly be a blessing. Please enjoy with our best wishes. Stan and Helene"