Saturday, May 31, 2014

"watches of the night"

I look towards the wintering trees
To hush my fretful soul
As they rise to face the icy sky
And hold fast beneath the snow
Their rings grow wide, their roots go deep
That they might hold their height
And stand like valiant soldiers
Through the watches of the night.

And no human shoulder ever bears
The weight of all the world
But hearts can sink beneath the ache
Of trouble’s sudden surge
Yet far beyond all knowing
There’s a strong unsleeping light
That reaches ‘round to hold me
Through the watches of the night.

I have cried upon the steps that seem
Too steep for me to climb
And I’ve prayed against a burden
I did not want to be mine
But here I am and this is where
You’re calling me to fight
And You I will remember
Through the watches of the night
You I will remember
Through the watches of the night.

                          - Kristyn Getty

Friday, May 30, 2014

his perfect peace...

"You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You."  Psalm 26:3
...exhausted, a bit overwhelmed, a huge "to do" list and some anxiety, hope mixed with grief, and a near speechless ride home.....BUT our God is mighty and His grace is sufficient, feeling regained strength this evening being reunited with our inquisitive kiddos, kissing their sweet faces, smelling their little necks....soaking up the goodness and finding many reasons to praise Him...for He IS good.
It was almost a baby-moon night last night (before the big day) but we had a last minute tag-along...a hotel sofa sleeper who needed his mama and his dad. So glad we decided to take him because it has been a tough couple of weeks for a big boy anticipating his first baby brother real soon. He visited all the doctors with us including the NICU, saw some very squirmy, sick little babies, and learned the new meaning of compassion. It was a day filled with science lessons on the necessity of lungs, oxygen, and the like.   
The Charlottesville team were kind, caring, and concerned but equipped and ready for Jude. Our prayer is for His perfect peace.  1) peace... for a little newborn who will want to cry and breathe for the very first time but shouldn't for his own health and easy transitioning to a ventilator machine along with feeding tubes, med tubes, and quite a few other tubes along the way.  2) peace... for a mama who'll long to hold, smell, and nurse her newborn baby.  3) peace... for a daddy who'll need to lean on a big God to lead his family through a fierce storm...
The ultrasound was the most beautiful part of the day because there, so very close by, was a strong and active boy, thriving well and already learning to exercise his lung(s) in the womb. He has hair and is amazingly precious!  Oh, unspeakable joy!  So tonight, above all, we "PRAISE" the Lord that He, in His infinite wisdom, chose to create little Jude with an infinite soul for a bring Him glory.  ~Jen

"Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid."  
John 14:27


Thursday, May 29, 2014

meeting the team...

"I have set the Lord always before me; because He is at my right hand I shall not be moved."  Psalm 16:8

Headed to Charlottesville tonight to meet the medical team tomorrow that will be caring for Jude. Please pray for safe travels....we are already exhausted with "information overload."  We met the Norfolk team earlier this week just in case Jude made an early, unexpected entrance. If that occurred, after stabilizing him, he would be life-flighted to Charlottesville. We prefer, however, to arrive together in Charlottesville with time to spare & with Jude still in utero!  ~Jen

"doe the nexte thynge"

From an old English parsonage down by the sea
There came in the twilight a message to me;
It’s quaint Saxon legend, deeply engraven,
Hath, it seems to me, teaching from heaven.
And on through the hours the quiet words ring
Like a low inspiration: “DOE THE NEXTE THYNGE.”

Many a questioning, many a fear,
Many a doubt, hath its quieting here.
Moment by moment, let down from Heaven,
Time, opportunity, guidance, are given.
Fear not tomorrows, child of the King,
Trust them with Jesus, doe the nexte thynge.

Do it immediately, do it with prayer;
Do it reliantly, casting all care;
Do it with reverence, tracing His hand
Who placed it before thee with earnest command.
Stayed on Omnipotence, safe ‘neath His wing,
Leave all resulting, doe the nexte thynge.

Looking to Jesus, ever serener,
Working or suffering, be they demeanor;
In His dear presence, the rest of His calm,
The light of His countenance be thy psalm,
Strong in His faithfulness, praise and sing.
Then, as he beckons thee, doe the nexte thynge.

Wednesday, May 28, 2014

about jude's condition...

CDH is a birth defect that affects about 1 out of every 2500 babies.  It occurs when the diaphragm either doesn't form correctly or doesn't close, leaving a hole through which digestive organs travel into the chest cavity.  The national survival rate for CDH babies is somewhere between 50 and 60%.
There are ongoing research projects trying to find out what causes CDH.  All that is known is that something happens between 7 and 12 weeks gestation that stops the diaphragm from closing.  So far, no definitive answers as to genetics, heredity, or environmental factors have been found.   

In utero, the baby's heart and lung development are compromised by the organs developing in the chest cavity.  CDH can frequently occur with other birth defects-- chromosomal anomalies, heart defects, etc.  Or, as in our case, it can be a completely isolated defect not linked to anything. 

The short answer to this is for a surgeon to place everything back into it's correct location and stitch up the hole.

Unfortunately, it's not.  CDH babies are born with severely compromised respiratory and digestive systems.  First, before repair surgery can even be discussed, the baby must be stable enough to withstand surgery.  A large determining factor is the heart's ability to pump blood into the lungs for oxygenating the body.  In utero, this process is unnecessary.  Upon a baby's birth, many factors have to line up just right for the heart and lungs to work together.  CDH babies have extra hurdles to get to that stage.  Post op, the situation can get challenging as well-- just because the hole is repaired doesn't mean the baby can breathe, or eat.

Go to the doctor 1000 times to make sure there are no other complications.  Stay pregnant as long as possible.  Despite all of the doctor visits prenatally, there are no guarantees or concrete prognosis that can be made until the medical team sees Jude in person.

He will be immediately resuscitated, sedated, and put on a ventilator.  Since it's unknown how well his lungs will function, they will err on the side of caution and breathe for him until they get a better idea of what is going on.  At no point do they want Jude deprived of oxygen.  After he proves stable in the heart and lung department (i.e. tolerating the ventilator and maintaining good heart function), repair surgery will be done somewhere after 1 week postpartum.

There are lots of medications and ventilation techniques that will be tried.  If those do not help, he will be placed on an ECMO machine.  ECMO is the reason we have to relocate to another area instead of staying near Norfolk-- very few hospitals in the country have ECMO  and it's vitally important that Jude be as close as possible to an ECMO machine if he needs it. There is also a possibility he might need it after his repair surgery if complications with his heart and/or lungs arise.

ECMO (extracorporeal membrane oxygenation) is a last resort intervention for very sick babies.  If Jude is unable to oxygenate himself, he will deteriorate quickly.  An ECMO machine is basically a heart/lung bypass machine that pulls the blood from his body, oxygenates it, and puts it back in.  It's used to give a baby's heart and lungs time to rest and hopefully strengthen while the machine does the hard work.  It has GREATLY increased the survival of CDH babies but it has its drawbacks. Being on ECMO for more than 3 weeks can severely damage a baby's brain and body.  Blood clots can form inside the machine which spell disaster just as blood clots do for normal people. The bottom line with ECMO is that you really don't want to end up on it.  If you do, chances are good that it's going to help the baby recover, it's just going to add some bumps along the way.

A series of baby steps out the NICU door.  Step one-- demonstrate ability of heart to function appropriately.  Step two-- demonstrate ability of lung(s) to expand, grow, and start functioning on their own.  Step three-- breathe without ventilation.  Step four-- suffer through Baby Rehab as medications are knocked down and withdrawn.  Step five-- demonstrate ability of newly rearranged digestive tract to tolerate feeding. It's a long haul (average 8-12 weeks NICU stay).  It's a rollercoaster (these babies can go from thriving to a poor prognosis in seconds). 

this is amazing grace....


Jude's name means "an abundance of praise."
As Jude's body was forming in the secret place,
his diaphragm didn't completely close.
This will require some aggressive treatments
in the short moments and weeks following his birth.
Please join us on our special journey...