Thursday, January 8, 2015

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 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


  1. jennifer. I just read your blog. I know your strong faith will give you the strength to face each day with the decisions and caring for precious Jude. He is in good hands having you for parents and his creator. May you know the strength and peace from God daily. Prayers for your family and precious Jude. I will continue to read as you post updates. Love and prayers. Janet.

    1. Mrs. Fuller, Thank you so much for your kind and encouraging words. We appreciate your prayers. We are so grateful for God's grace through this entire journey. He is good;) ~Jennifer

  2. Jen, I almost know what you are going thru. When Britney gave birth to the twins we knew baby girl Baily had passed a month before but baby boy Brayden was tiny but alive. Grant was ill but not diagnosed which meant he was cranky. After many issues with baby Brayden we pretty much knew he would have disabilities. While sitting by his side praying for his life I made the decision to take the journey with my daughter. I went home and informed Grant I would care for Brayden while Britney worked. I would take him to therapy and do whatever was needed. Grant was not pleased with decision and it was one of the few disagreements I refused to back down. I promised to keep up with my clients and continue to spoil him as I had for 30+ years. As it turned out we lost Brayden, May 13th, Chelsea gave birth to a healthy 9.5lb baby boy June 4th and we lost Grant Juky 5th. As it turns out Grant is doing what I planned. As it also turned out after a few minths of grieving I cane home and babysat baby Tanner until Britney gave birth in August to healthy baby Vivian. I know spend my days kissing rosy checks, changing diapers, getting my 5 year old grandaughter off to school and taking care of my clients. Grant left no estate or life insurance but I manage to be a major part of my grandchildrens life and support myself in a small apartment. Moral of this is You and Paul can do this. God gave a special child to special people. I know he has already been a great source of joy and always will be. I still mourn Brayden, would it have been hard, yes but raising any child is hard. No one knows Gods plan for us, all we can do is pray for guidance and hope we him correctly. Your family will continue to be in my prayers.