Where we've been and where we're going

I have completely neglected this blog for the last two weeks as we have been going through one of the worst situations I can imagine.  Be warned this will have to be a long post in order for me to bring the blog up to date.  Let me summarize Joshua's story for those that are just learning of our circumstances.  Josh was born on July 31st with a condition called gastroschisis which is an abdominal wall defect that caused, in his case, a portion of his intestines to be free floating outside the abdominal cavity.  He was transported to Children's Healthcare of Atlanta immediately after birth for surgery and treatment.  The initial closure surgery went extremely well and he was recovering in record time.  We were set to be discharged from the hospital on August 31st and we were thrilled to be going home before the Labor Day weekend (and in time for the first UGA football game).  On Thursday evening (8/30) David and I went out for a celebratory dinner while my parents stayed with Josh in the hospital.  We were enjoying talking about everything we were going to do at home with Josh that weekend when I received a call from a doctor I had never met.  She told me Josh had blood in his stool which caused them to believe he had an infection called necrotizing enterocolitis (NEC) which is a very serious infection that leads to necrosis or death of intestinal tissue.  I had heard of this before and knew it was a very serious situation.  David and I dashed out of the restaurant and made it back to Josh's room in 10 minutes.  He was immediately put on powerful antibiotics and had his stomach tube reinserted.  The rest of that night is a blur of fear, panic, and heartbreak as I watched my poor baby go from bad to worse as each minute painfully ticked by.  His heart rate was abnormally high and he was inconsolably crying in pain.  He eventually started moaning and twitching as his suffering worsened.  What no one knew at the time was his bowels had twisted inside his little body and blood flow was being cut off to portions of his intestine causing them to slowly die.  As his condition worsened, more nurses and doctors were brought in to try and assess what was happening.  An X ray was taken and showed free air in his abdominal cavity.  This is typically seen when a perforation in the bowel has occurred which is a very serious, life threatening situation.  Joshua was immediately transferred back to the critical side of the NICU as the doctors determined what the next course of action would be.  As this was all happening in the middle of the night, David and I were deliriously exhausted by the time a surgeon came to get our consent for an emergency exploratory laparotomy to fix the presumed perforated bowel.  After a grueling 90 minute wait Friday morning, the surgeon came back to explain she had not found a perforation, but instead found a malrotation with volvulus.  His intestines had twisted and three sections of bowel looked questionable.  The surgeon decided to leave everything intact in the hopes that the tissue reperfused and healed on its own.  Josh's appendix was also removed during the procedure so at least we never have to worry about him having appendicitis.  Another surgery to check the three questionable sections of bowel was scheduled for the next day (9/1).  Joshua was in very critical condition on Friday as his vitals steadily became more unstable.  He could no longer maintain a normal blood pressure and as his body shifted his blood supply to his core and major organs in a survival effort, he took on a frightening ghostly white pallor.  A doctor sat us down Friday night to frankly discuss how serious the situation was.  She basically said they were doing everything they could to keep his vitals stable with fluids, medications, and blood products, but there were limitations to what they could do and it would be up to his little body to keep fighting.  I slowly and unwillingly came to the horrifying realization that she was preparing me for the worst possible outcome.  I never knew the level of desolation I felt was possible.  This was the worst nightmare imaginable! 

Joshua after his first exploratory surgery.  His bowel was untwisted and his appendix was removed.

 Joshua was scheduled for the next exploratory surgery on Saturday morning.  We anxiously awaited when he would be taken back for the surgery because the anaesthesiologist was not happy with his blood clotting factors.  After multiple plasma and platelet infusions, Josh was eventually cleared for the surgery around 1:30 pm.  We strongly hoped the surgeon would find that all of his bowel could be saved, but unfortunately that was not the case.  The three sections of questionable bowel were gangrenous and needed to be removed immediately because the byproducts from the dying tissue were making Josh very sick.  A 10 inch section of small intestine was removed and an ostomy was created in his jejunum.  In a nutshell, this means Joshua's intestines are not currently connected in a continuous tract.  The two ends of free intestine (called a stoma) are brought through the abdominal wall and temporarily attached there.  An ostomy bag covers the upper stoma to collect all of the gastric juices and the lower stoma is simply covered with a sterile dressing.  Josh will continue living like this until a reconnection surgery takes place on October 4th.  This gives his intestines time to heal before the reconnection process takes place.  The healing phase is crucial to a successful reconnection.  After the next surgery, Joshua will need at least another 6 weeks to rest his intestines and get up to full feeds again.  He is only allowed a third of an ounce of milk every 3 hours currently and the rest of his nutrition comes from IV fluids.   

Joshua after his second surgery to remove 10" of gangrenous bowel.  You will notice how swollen he is from all of the fluids and inflammation from the surgery.  He was almost unrecognizable.

After a few days the swelling has started to go down and he is able to open his eyes again. 

 So instead of going home on August 31, we are facing another 3 months of living in the NICU with our little fighter.  We were naturally crushed, but so relieved Josh was going to recover, that it seemed a very small price to pay.  In learning more about the twisted bowel, we were told it only happens in less than 0.25% of gastroschisis babies.  Our odds of the original gastroschisis diagnosis were 1:10,000.  Now multiply that by 0.25% and we are talking about getting struck by lightning while being eaten by a shark kind of odds.  You can't help but ask yourself why.  Why did this happen to us?  What have we done to deserve this?  It doesn't help of course to ask these questions, but you still do.  I quickly came to realize the much more important questions are where do we go from here and how do we get there?  The answer is we are moving towards a completely healthy, normal infant.  We have the surgery ahead of us on 10/4, then we will have a 1-2 week period of letting Josh's intestines rest and heal after the surgery, and then we will work back up again to full feeds.  Then we will go to our personal Four Seasons resort - HOME.  Until then I will be living with Josh in the NICU while I attempt to keep a positive attitude about these confined living arrangements.  It should not be too difficult given the alternative - not having Joshua in our lives at all.

The first time I was able to hold Joshua after his surgeries.  I could not wait to get my hands on him again!

David and I have the support of so many during this unfortunate situation.  We can never thank our family and friends enough for the well wishes, prayers, positive thoughts, notes of encouragement, calls, and visits.  We could never make it through this without you all.  Thank you!
    

Joshua back in his big boy crib on the B side - our home for awhile.