Trials...

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. ⁴ Let perseverance finish its work so that you may be mature and complete, not lacking anything." --James 1:2-4


Rob and I went to Cincy Children's Hospital on Friday to have some tests run and find out if there is anything that can be done to help our Junebug. We were lucky enough to have my parents go too, just to be support and keep Rob company while I was being poked and prodded. We arrived at 9:30...they did an ultrasound (for 1 hour and a half), fetal MRI (for over an hour), fetal echocardiogram (for about 45 minutes), met with a genetics counselor, and had a huge team meeting with four doctors who are some of the finest in their specialities. Needless to say, by the time we got to the team meeting at 5:00, Rob and I were exhausted--physically, mentally, and emotionally. 


The doctors went over the MRI images and ultrasound findings. Some of which we already knew...some was new information to add to our list. 
We knew...

• the umbilical cord is only a 2 vessel cord (instead of the normal 3 vessel cord)
• Junebug's lungs are severely hypoplastic (meaning they are severely underdeveloped and small).
• the left kidney is no longer functioning 
• the right kidney is multicystic 
• there is a bladder obstruction, resulting in severe oligohydroaminos (low to no amniotic fluid)

We didn't know...

• the urine is mixing with the meconium (bowel) and calcifying 
• there might be an imperforate anus/anal atresia (an anus that does not open to the outside of the body)
• Junebug has a tethered spinal cord
• Junebug has a hemivertebrae (a wedge-shaped vertebrae that could result in scoliosis)
• Junebug's heart has a ventricular septal defect (a moderate hole in the wall that separates the right and left ventricles of the heart)

With all of that being said, Junebug has been diagnosed with VACTERL association. VACTERL association is a nonrandom association of birth defects that affects multiple organ systems. The term VACTERL is an acronym with each letter representing the first letter of one of the more common findings seen in affected children:

(V) = vertebral abnormalities

(A) = anal atresia
(C) = cardiac (heart) defects
(T) = tracheal anomalies including tracheoesophageal fistula
(E) = esophageal atresia
(R) = renal (kidney) and radial abnormalities
(L) = (other) limb abnormalities

To be diagnosed with this, at least three of the seven defects need to be present in an infant. The exact cause of VACTERL association is unknown. Most cases occur randomly, for no apparent reason (sporadic).

Unfortunately, there is nothing that can be done to help our Junebug. If JB would have only one or two of the defects/abnormalities, the doctors could probably tackle them through surgery or other medical solutions. But there is too much to try to deal with...so now we just wait to see when we can deliver. The outlook for Junebug is very grim. Even after I deliver, Junebug won't live long because of the underdevelopment of the lungs. 

So we are trying to spend as much time with Junebug as possible and make it as positive as we can. We know the journey is not over yet...and won't be for a while. God has used our little Junebug to touch and change so many people. 

Please continue to pray for us...God will continue to give us strength, wisdom, peace, and comfort. Please continue to pray for our families and friends...this news has been hard for them too! 

We are still praying and hoping for the best, but preparing for the worst.