Tuesday, May 28, 2013

Waylon's Story, written by his mama

Post by Amanda

It all started with a nurse handing me a business card with three words written on the back: "congenital diaphragmatic hernia." I had never heard these words before, never knew how much these words would change my life, and didn't fathom that these three words would take my baby's life.

That echo sonogram appointment on January 9, 2013 when we received Waylon's prognosis of CDH started our crazy journey of what was left to be the rest of his life.  A part of me is thankful to know ahead of time what Waylon was facing, but from 25 weeks on I was never able to enjoy his pregnancy the same, knowing that any moment could be his last.

We did everything the Dr's suggested...amniocentesis (which came back with no genetic links...this increased his survival rate slightly), Fetal MRI (this showed he actually had 2 lungs when the sonograms were only showing 1), meeting with specialists from the Children's Hospital where he would need to be born, coming up with a plan for his CDH surgeries he would need, meeting with a high-risk OB weekly, being admitted into the hospital for monitoring, 3 times a week getting bio-physical profiles (sonograms to watch for movement, practice breathing, etc) and NST's (monitoring heart rate)...just to make sure Waylon was OK.  One appointment would be "OK," the next "things aren't looking the greatest," to everything is "staying stable," to "we aren't sure if he will make it to the next appointment," then finally some light...things are actually looking "better."  You could say that this was a roller coaster to put it mildly!

I was getting brave, on February 27th, I made the first trip to Children's Mercy for my weekly appointment ON MY OWN.  This happened to be the best appointment we had had so far.  They took the measurements and some adorable pictures of Waylon playing with his feet.  The high-risk OB came in and looked again at Waylon and said..."I don't know why, I don't know how, but the hydrops/extra fluid is almost all gone."  It was hard NOT to get excited, this increased his odds of survival even more!  I was cautiously optimistic as I drove home jamming out to my favorite tunes and spreading the news to my husband/family. 


Then the next day...my contractions started.

It's amazing how fast you can forget what labor feels like.  It took me a long time (hours) to realize what I was feeling was contractions and they were happening pretty regularly.  I sat down to eat dinner with Gracyn and I suddenly lost vision in my left eye.  Then I knew it was time to go to the emergency room.  Fast forward to hospital...sure enough, those were contractions I was feeling and I was already dilated to a 3.  They hooked me up to magnesium and then my Dr. came in and told me it's probably best to send me to KC in case I was in preterm labor.  Here's where the real excitement started:  ambulance ride to the airport, put on a JET to KC, landed in down town KC, then ambulance to Children's Mercy.  I get to Children's Mercy and it's almost midnight, I'm exhausted from a full day of teaching and then all of the excitement of getting to KC.  My blood pressure was still all over the place so unfortunately I was unable to stay at Children's Mercy.  You have to be a healthy mom to deliver there because they only deal with the babies.  So on to my 3rd hospital of the night...Truman Medical Center.  By this time the magnesium had done it's job and my contractions were almost completely stopped. 

The next few days were uneventful.  Waylon's heartbeat "thumped, thumped, thumped" on the monitors as Hoyt and I got used to hospital life.  Friday comes and goes....Saturday gets here and they noticed my liver levels were starting to elevate (showing that my liver may be shutting down).  They just planned to keep monitoring us both and then come up with some type of plan on Monday.

However, Waylon had other plans.  On Sunday morning, March 3, 2013...Waylon decides it's time to make his way into this world.  Boy, he was ready and there was no turning back.  I woke up at 5:30 AM to go to the bathroom and then contractions started fast and furious.  The next hour was a whirl wind.  The nurse found a doctor and when they checked I was already dilated to a 7.  I freaked.  I knew in my heart Waylon was too small.  The CDH had caused his lungs to be severely underdeveloped and now he was going to add prematurity on top of that.  Sure enough, the Dr. affirms they won't be able to stop contractions, there is no time for an epidural, and there isn't time to go back to Children's Mercy to deliver.  Mass chaos begins...nurses from NICU start prepping for Waylon, nurses trying to clear our room, other nurses running trying to find all of the doctors who were finishing up with another delivery.  I tell Hoyt to go take a quick shower and get ready for the day.  Next thing I know during all this chaos my water breaks...EVERY WHERE.  Remind you I had polyhydramnios (extra fluid)...so I mean everywhere.  Only a contraction or two later I was asking (aka begging) to push.  Next thing I know...Waylon was here at 6:21 AM.  Who ends up delivering Waylon...The doctor from another hospital that confirmed his diagnosis of CDH (weird, huh?).  Hoyt walks out of the bathroom to witness them cutting the cord.

There was no cry (we were expecting this with the underdeveloped lungs).  But oh how I will remember the look of Waylon's face....he was trying so hard to breathe.  When they laid him on the table we heard a little bitty peep.  The next minutes seemed like an eternity for me, I can only truly remember the sounds of all the alarms going off.  You learn quickly alarms are not a good sign, they are a warning that something is not right.  Waylon was fighting for his life.  They would get his heart to beat a few times and then it would stop.  They tried epi...they tried to intubate and nothing was working.  It was all just too much for his little body to handle.  They tried for 30 minutes, then they asked if we would like to hold him...we said of course. 



Hoyt and I were so blessed, we got to spend that Sunday with our very own angel.  We held him, hugged him, kissed him, bathed him, dressed him, read to him, took hand prints/footprints, talked to him about his family and told him how loved he is.  We found out that this big guy weighed in at 3lbs, 11 oz and was 16 inches long.


I knew that Waylon was in good hands when we were taking some more family pictures and I noticed a special message. The outfit I had bought, washed, and packed for him but never noticed before had a little tag on it that said "Grandpa's Best Friend."  Waylon is in heaven with his grandpa and other relatives that have gone before him.  I can't be with him now, but I know that some day we will be together again.

Waylon was in our arms for a short time, but he will forever be in our hearts.  

Read more of the story HERE

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