Tuesday, May 14, 2013

Reliving the Whole Ordeal...

The last couple of weeks, going to therapy has been really strange.  I would get there and get this really nauseating feeling pulling up.  I couldn't figure out what was causing it until I sat down last week and realized... one year ago, in May, we got Dryden's diagnosis.  The specialist that gave us his diagnosis is in the building right next to his therapists... and every time I pass there I just get sick thinking about it.  I know, you would think that with as well as Dryden has done, it wouldn't be an issue... but let me assure you... you will never forget the way you felt when someone crushed your entire world.  

Going back to the day is such an emotional roller coaster ... but I relive it all the time.  Just to give you a glimpse into what it was like, I will try and put everything into words.  Even so... actually living it is something I would never wish on anyone.  Some things may seem insensitive, or shallow, but let me assure you, it is not intended to be that way.  I am just trying to explain the feelings and emotions that were happening at the time.  

Monday, May 21, 2012:  I was about 29 (almost 30) weeks along.  We were scheduled for a routine ultrasound with my OB/GYN.  We had been to a ton of doctor's appointments and even done the 3D/4D ultrasound and now seeing Dryden was just exciting!!  I had taken the morning off to go to the appointment, but was planning on being back at work after lunch.  Brian had the day off so he had gotten to come along.  We were cutting up at the doctor's office, as usual.  We did the ultrasound and went in to wait for the doctor.  I was sitting on the examination table laughing when the doctor came in.  He said, "We found something abnormal in the ultrasound."  My heart dropped.  I looked at B and froze.  He went on to explain that he saw a bit more fluid in the baby's brain than normal and he wanted to send us to a specialist for a second opinion.  He assured us that this wasn't uncommon and that he may just need to have the fluid drained and he would be fine.  The ultrasound didn't show anything else abnormal so it was really just a precaution.  I was nervous, but with his reassurance, I felt ok.  My doctor scheduled us with the specialist that Wednesday.  We went home and crossed our fingers and hoped for the best.  

Wednesday, May 23, 2012:  We were pretty nervous being in the specialist's office.  We really weren't sure what to expect, but we really didn't think anything was wrong.  They called us back and brought us into the ultrasound room.  We watched nervously as the ultrasound tech started doing her exam.  In front of us, on the ceiling, was a large monitor so we could watch the ultrasound.  But this one was different.  They weren't trying to get cute pictures.  They weren't trying to let us see Dryden.  They were studying him.  We couldn't even tell what it was they were looking at... but on the screen to the right the tech was clicking away.  Highlighting things... magnifying things... not once saying a word.  We kept seeing her highlight and then click "abnormal".  Every time she hit abnormal, it would light up bright red.  We kept looking at each other, getting more and more worried by the minute.  Then she stood up, said, the doctor will be with you in a minute, and left.  We were so confused.  What was so abnormal?!  Why didn't she even say anything??  We sat there for what seemed like FOREVER before the doctor came in.  She reviewed the tech's information and then did her own ultrasound as she and the tech talked to each other pointing out different things.  Still never once trying to explain what they were talking about.  Then she stopped and turned to us.  She asked us if we knew why we were there.  We told her that our doctor said that Dryden had a little extra fluid on his brain and that he said it wasn't a big deal.  Then it happened.  

She said that there wasn't just a little fluid on his brain.  There was a "moderate" amount.  We didn't know what that even meant... so we kept asking her... moderate... what is moderate?  What does that mean?  She said that it was a lot... a LOT more than should be there.  But that wasn't the only problem. The reason that the fluid was there was because Dryden had myelomeningocele, a form of Spina Bifida.  She explained that there was an issue when his spine was being formed and that he had a lesion on his back ... a sac ... where his spine and nerves were exposed.  The rest of the appointment was kind of a blur... I remember sitting there just crying.  Brian kept asking her, what does this mean?  Is he ok?  Is he going to live?  She told us that he would lead a very difficult life if born.  I remember she just kept talking about the "moderate" amount of fluid on his brain.  Brian kept saying, "What does that MEAN?"  Is he going to be mentally retarded?  Is he going to be ok?  She told us that if he was born he would have severe mental retardation.  He would pretty much be a vegetable.  She said that the lesion would render him in a wheelchair all his life and that he would never walk.  He would have no quality of life.  She then told us that since I was so far along they couldn't legally abort him in Louisiana, but that there were other states that would if we decided to abort.   I couldn't believe it.  If this was a problem that was there since before our first ultrasound, why did NO ONE see it until now?   

She told us that we would need to see her weekly from then on to monitor the lesion and fluid and make sure that there was not too much stress on Dryden.  Then she left.  We sat there, both of us, crying for I don't know how long.  I didn't want to move, but I didn't want to be there another second either.  Finally we left.  I remember getting to the parking lot, still crying, when I saw a little girl in a wheelchair, who had very obvious mental retardation... and I just remember sobbing.  Is that what we had to look forward to?!  If that was the case, would it be better if we did abort him?  Why was this happening to us?!  I couldn't go to work.  I think Brian called them and told them that I wasn't coming in.  I sobbed the entire way home.  I was absolutely crushed.  I got home and just collapsed in the bed and sobbed.  For hours.  B kept his distance, and we barely talked.  The whole way home he just kept saying, "It's going to be ok".  But I knew he was scared.  I was so angry, and terrified, and just kept thinking that this was all my fault.  I must have done something wrong.  

I thought for sure that Brian hated me.  How could he not?!  He had so many plans for Dryden.  He, himself, was a skateboarder, dirt bike rider... rode bmx... and we talked about all of these things for Dryden.  He couldn't wait till Dryden rode his first skateboard.  He couldn't wait to play football with him.  And now... he would never have that.  He would never get what every father dreamed of for his son.  I ruined it all.  

I remember calling Rhema and even though I insisted on her not coming, she dropped everything and came over.  We sat in her truck for an eternity and talked. We both cried.  We went through the whole thing again.  I told her, I couldn't see anything but that little girl in the wheelchair and that I didn't think I could be one of those moms.   I didn't have it in me.  She told me, Kellee... he's still going to be a baby.  He isn't going to be born a 12 year old in a wheelchair with mental issues.  He will be your baby and you will love and snuggle him, and hope for the best.  I remember feeling so much better after that. I was still terrified, and I still cried myself to sleep so many nights, but that one thing kept me going.  

We already had a 3D/4D ultrasound done, and actually had another one scheduled for when I was 32 weeks.  But I couldn't wait another two weeks.  I called and scheduled it for that Saturday.  I had to see Dryden again.  I had to see my BABY instead of a wheelchair.  I know it sounds terrible, and shallow, and I'm not trying to be insensitive, but rather trying to express what I was feeling at the time.  As usual, Dryden was difficult for the ultrasound tech.  He would always start moving around like crazy when they tried to get a clear picture.  But we still got a few.  He smiled, he kicked, he wiggled around... and he reminded me that he was just like any other baby.  There was no way that there was something wrong with his brain.  Once again, I felt much better leaving there.  

I dreaded going back to the doctor the next week.  I never wanted to see her again.  We went through the ultrasound process again... talked to the doctor, and found out what was in store.  We would need to see a neurosurgeon and have him talk to us.  Dryden was going to need surgery as soon as he was stabilized to close the sac on his back.  After that, they would install a shunt in his brain to drain the fluid.  They referred us to a pediatric neurosurgeon and waited for the appointment.  

Brian couldn't take off of work for the appointment, so I recorded the whole thing to make sure I didn't miss anything.  His mom came with me too.  I remember initially thinking, OMG this guy is OLD when I first met Dr. Walsh.  He started talking, and was so hard to understand at first.  But the more he talked the more I liked him.  He really seemed to know what he was talking about.  He said that he had done over 5.000 of these operations.  I asked him his opinion about the fluid on his brain and whether he thought Dryden would be in a wheelchair his whole life.  He assured us that the fluid on the brain was not that bad.  He said that Dryden's head had not started to grow abnormally, which meant that the fluid was not continuing to build up.  He said that short of a few behavioral problems, and possibly a few motor skills that would need work, Dryden would be just fine.  As far as the wheelchair, he said that it really was all up in the air and depended on where his lesion was, what nerves were involved and  on Dryden himself.  He told us that he had many patients with myelomeningocele that were able to walk and lead perfectly normal lives.  He said that where Dryden's lesion seemed to be, the most likely outcome would be that Dryden would have no movement in his legs.  He would have no feeling below his knees.  His bowel and bladder would also have issues as the nerves for these fall into where his lesion was.  We asked if there was anything we could do... if there was any cure... if we could fix it.  He explained that there was nothing.  What was done was done.  And that it wasn't anyone's fault.  

The rest, as they say, is history.  Dryden was born via c-secion on July 18, 2012 at exactly 36 weeks.  They did his spinal surgery at 9:30 a.m. on July 19th and his shunt surgery on July 20th.  Let me tell you.  If you think being pregnant and waiting for your baby is torture, imagine being pregnant and knowing that instead of holding your baby after birth, he is going to have to go to surgery.  As a parent, not being able to fix things for your children is pure torture.  We all know this, when our kids get a scrape or cut, when they have a cold, when they break a bone... but this is multiplied times 1000.  It is absolutely unimaginable and beyond explanation.  The heartache of seeing your newborn baby laying there with an incision from hip to hip, an incision on his head... and him hooked up to all kinds of tubes... it makes me shudder just remembering it all.  

Things were pretty rocky for the first few months.  His back had issues healing, he had to have a shunt revision in December, and we have been to the ER a handful of times now.  Obviously, Dryden has done much better than his prognosis.   He has movement in his legs and as Dr. Walsh predicted, he has limited sensation in his lower legs.  We don't know exactly where the sensation stops, but just from poking around we know it is at least from the shins down.  His orthopedist says that he should have no problem walking though with some assistance.  

There are still days that are extremely hard for me.  My stomach still turns when I see other kids his age crawling and running around.  I ache to know that he can't do everything they can do.  I get jealous, and angry and sad all over again.  There isn't a day that goes by that I wish he didn't have to deal with this.  But there also isn't a day that goes by that I am not absolutely amazed by what he can do.  He is the happiest baby I've ever met.  He has so much personality, and a smile that melts everyone's heart.  He has become an inspiration to us and to everyone who knows him. 

He has opened our eyes and made us so much more aware of the world around us too.  We all get so caught up in our own world and our own problems and life that sometimes we forget that there are people out there dealing with so much more.  Brian and I have made it our goal to give whenever we can.  We want to raise awareness and give hope to those out there who had to go through the same thing as us.  We want to let people know that there is so much doctors don't know and that a diagnosis is NOT a death sentence.  Don't ever give up, because your kids never will.  

We have researched and found that there may actually be a treatment that can help him though.  Stem cells are producing amazing results in other children with Spina Bifida and we are hopeful to have this treatment done for Dryden in the near future.  We have set up a fundraising page and are hoping to get the funds before too long.  If you would like to donate, please do so at 

Any help is appreciated.  If everyone gives even $5.00 or $10.00 we could have the treatment done this year.  

Most importantly though, please pass along Dryden's story.  You can find everything on his page, Dreaming for Dryden https://www.facebook.com/DreamingForDryden .  You never know when you can help someone by sharing his story.  

Thank you all so much for reading.  We will keep everyone updated, as always.