Shabby Miss Jenn

Wednesday, May 26, 2010

Three Years Ago...

A new friend of mine sent me an email asking what happened during Wade's birth to require a helicopter ride to Cook Children's.  She didn't know if she had missed the info in my blog or if I never really wrote it.  I started this blog when Wade turned one in an effort to keep friends and family more up to date.  Since most of them knew what happened during the birth, I guess I just failed to include that portion--a very important detail!!!--in my original postings.  Now that things have settled down (i.e. I've gotten used to my new life) I'm trying to branch out and meet more people who share our daily struggles.  As a result, I'm trying to blog more to again keep family and friends up to date, but to also educate, inform and share with others what our life is really like.  So, in honor of Wade's birthday, I thought I'd do a quick recap and actually include his birth story.

Three years ago today, we recieved the official news that Wade did indeed suffer brain damage from the lack of oxygen during his traumatic birth. I can still remember the day like it was yesterday...

Rewind to Monday, May 21, 2007.  Curtis and I spent the day watching TLC which included a few episodes of A Baby Story.  I vividly remember telling Curtis that I did not want a C-section (which happened in at least one of the episodes) and him saying, "We'll do whatever we need to do."  We left for Baylor Hosptial in Irving that evening where I was scheduled to be induced.  They were to start cervadil that night, and start the pitocin the following morning.  At the time, I was 41 weeks.  I really wanted things to happen naturally, but my parents were flying in that night and the doctor said if the baby wasn't here by Friday, he would induce anyway.  In an effort to not bore you with the details, I'll just say that things that night and into the early morning were pretty uneventful.  Unknowingly, I was already having contractions when I got to the hospital.  Throughout the night though, I could feel a lot more.  I was a little naive and told the nurse that I was going to do things naturally.  She quickly informed me that the hospital wasn't really "friendly" towards natural births as far as equipment and such.  I would be hooked up to the machine so I couldn't walk through my contractions.  There weren't any birthing balls, and I couldn't take a bath even though there was a huge tub in my room.  I guess I should've looked into all of this ahead of time, but since it was my first pregnancy, I was pretty clueless on this type of thing.  Tuesday morning after I showered, I consented to some pain meds, and the doctor eventually came in and talked me into an epidural telling me, "you don't need to be a hero."  So, they gave me an epidural, my left leg kicked out, and things were pretty easy.  I slept through pretty much everything. 

The nurses assumed I would progress slowly, but by noon, I was ready to push.  The room was cleared of visitors except for Curtis and my mom.  My mom, at the very last moment, decided to stay.  (Thank you God for those extra set of eyes and ears!!!!)  I couldn't feel anything, and I remember snoring between pushes.  (The whole reason I didn't want pain meds.  I wanted to be aware of everything.)  I also remember Curtis eating a sandwich between me pushing!  Then, all of a sudden the atmosphere in the room totally changed.  Even in my groggy state I knew things had gone down hill fast.  I had a nurse up on my bed, I heard C-section, I was crying, and they wheeled me out of that room through some double doors.  In the operating room they hurriedly removed my jewelry.  The anesthesiologist was at my head repeating over and over "This isn't good.  This isn't good."  Wade was born at 2:31PM.  I asked, "Why isn't my baby crying?"--I had watched enough episodes of The Baby Story to know that he should be crying by now.  The anesthesiologist said, "It's okay.  They just have their fingers in his mouth."  What?!?!  That didn't make me feel any better!  Then I could hear them counting and "bagging" him, so I knew he wasn't breathing.  I can remember thinking, how are we going to go home without a baby and tell everyone he didn't live?  At some point, they got him stable--his apgar's were 0/3/3--and I was wheeled to recovery.

While I was in recovery, the team was prepping Wade for a helicopter transport to Cook Children's.  Because of the type of trauma, he was a candidate for a new type of treatment--full body hypothermia, aka cooling blanket.  The only hospital in the area that had this treatment for transfer patients was Cooks.  The idea of the treatment was to drop the core body temperature down for 72 hours in an attempt to stop any further damage from occurring due to the loss of oxygen.  It could not reverse any damage that had already happened, but hopefully it would stop further damage.  Although the delivery hospital and Cooks are only about 45 minutes away from each other, since it was rush hour, they opted for the helicopter transport.  I did get to see Wade for just a few minutes before they flew him away.  I also got to touch his hand, and then I didn't see him for two and a half days as we were at separate hospitals.  Over the course of the next few days, I learned that Wade had gotten "stuck" in the birth canal and the doctor tried a forcep delivery multiple times with no success.  Since then, we have also learned that the pitocin was allegedly causing me to hyperstimulate, not giving Wade enough time to recover between the contractions.

I was discharged that Friday, May 25 and went straight to Cooks.  I was not able to hold my sweet boy because he was intubated and still on the cooling blanket and had wires hooked up everywhere.  That night we went back to the hospital so we could be there when they removed him from the blanket.  That was quite the experience because right at the end, the blanket busted and water flowed everywhere!

Friday the doctors were all very positive about his prognosis. The EEG wasn't showing anymore seizure activity, and he seemed to be doing well.  They were scheduling him for an MRI as soon as possible.  Saturday morning we took our time getting to the hospital.  Mom and Dad were also flying back to VA that afternoon.  To our surprise, when we got back to the hospital, Wade was being returned from getting the MRI.  The doctor told us he had the results.  I knew in my heart of hearts that things weren't okay before he even said anything.  I asked him, "Is it good or bad?"  Dr. Nedrelow replied, "It's not good."  He said he was very surprised at the results because everything else seemed to be okay.  I don't remember much after that except to ask him to come to the waiting room so he could tell both of our parents.  Dr. Nedrelow has the best bedside manner.  He was very comforting and let all of us ask all kinds of questions.  The neurologist however, was very matter of fact and gave us worse case scenario.  According to him, Wade would be in a wheelchair for the rest of his life.  He would not walk or talk.  The area of the brain that was damaged put him at high risk for cerebral palsy, mental retardation and epilepsy.  Because I am a special education teacher, I prayed everyday for God NOT to give me a child with special needs.  I remember sobbing this to Curtis after we all left the waiting room.  But God had different plans and knew what he was doing when he led me down the path to that career.  He was preparing me for May 22, 2007.

Wade was in the NICU for 16 days.  He wowed the doctors with his improvements.  Dr. Nedrelow was off for a few days, and when he returned he was in shock.  He called me and said, "I have one word for you.  WOW!  This is a different baby than the one I left a few days ago."  I said, "Of course he is.  He's on every prayer chain across the country!"

So, in the beginning, our outlook on things was very grim.  Now, three years later, I think Wade has surpassed all of their initial expectations.  What did I learn in the process?  That most doctors are very intelligent and knowledgeable in their field.  However, they don't know everything.  They cannot predict the future or the outcomes.  While I still value their opinions, I do not put them on pedestals as the end all, be all.  They are humans.  They make mistakes.  They are NOT God.  Only He knows what's in store for us.  And while it is a very emotional and tiring road, it is full of laughter, smiles, and most of all, miracles!

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."~Jeremiah 29:11

Wednesday, May 19, 2010

Under Construction

Our house has been a complete disaster zone for the past few weeks.  The first weekend in April, we went and picked out all the materials to begin the process of making our home a little more "Wade friendly".  As we won't be staying in this home forever, we don't want to modify too much, but we still want Wade to be comfortable in his own home.  We also needed a place to keep all of his equipment without taking up space in the living room.  And since we started the order for his power wheelchair in February, we definitely needed to start pulling up some carpet!

Here's a rough list of the things we've done/are doing:
     *  remove garden tub and shower in master bathroom and but in a big roll in shower with a bench and retractable shower head
     *  pull up carpet in master bedroom, living/dining area, kitchen and utility room--replace with ceramic tile that looks like wood (We were going to go with wood or laminate, but the sales lady told us there was no way she was going to let us do that because we were putting it down in wet areas--utility room and kitchen and door from pool in yard.  She also said the tile would be so much better with his wheelchair.)
     *  replace linoleum in master and hall bath with tile
     *  convert garage to a sensory/therapy/play room for Wade

So, our lives have been up in the air for about a month and a half.  When they semi gutted the bathroom, there was a fine white dust covering our entire house--and our lungs for that matter!  We decided to leave a typical garage door on the garage, but replaced it with an insulated door with windows to let in some light. This way, it will be easy to convert back to a regular garage when we move.  Plus, it gives Wade extra room to practice out into the driveway with his wheelchair or gait trainer or whatever.  For the floors, we put down those cushion interlocking tiles, but we got the ones with carpet on top.  I chose navy.  We also installed a heater/ac unit.  Then we painted it a lime green.  I love it, but Curtis was a bit worried.  I wanted it to be stimulating and fun.  Jordan (my sister) and I picked up some shelving from IKEA with some tubs in primary colors.  The final touch for decorating will be some circle decals for the wall.  We also found a red love seat at a garage sale for 10 bucks!!  This is my new favorite room.

Our floors were finished this week, and the painter was here today touching up baseboards and doors.  We also had a lady across the street clean yesterday and today to get things back in order.  It looks like we're on the home stretch.  We have to be down by tomorrow night because my mom flies in from VA!

Pictures of our construction zone!

Saturday, May 15, 2010

PPCD...Take two

We went back to the school on Thursday so that Wade could be evaluated by the OT, PT, and speech therapist.  I have to say, this time around, it was a much better experience.  One of the teachers also joined us to take notes.  Unfortunately, Wade had just come from an hour of PT and OT, so he wasn't in the greatest of moods.  Plus, there were a bunch of strangers surrounding him wanting him to perform on demand, which he does not do!  

The school is beautiful though!  The halls and classrooms are all so brightly decorated.  It seems like a very inviting atmosphere.  I was very impressed with the equipment in the motor lab and the equipment that they are wanting to buy with some stimulus money.  They even had a brand new Kid Walk in the motor lab.  The staff were all very nice and friendly and seemed genuinely interested in doing what is best for Wade.  I was able to express my concerns about Wade being in a self-contained classroom.  I want him to be around typical kids as well.  I know he needs extra help with mobility and self-help things, but he also needs to be surrounded by kids who are walking and talking so he can learn from them.  Wade is a very social little boy, and he needs that interaction.  All in all, it was a very informative meeting, and I feel a lot more comfortable with sending him to school in the fall.  (And, I only cried twice!)

On Friday afternoon, we had our official ARD meeting.  (IEP meeting for those who aren't in TX.)  Being a special education teacher, I've sat through my fair share of these meetings.  It's a whole different ballgame sitting on the other side of the table!  Things were going along very smoothly.  We were happy with the goals and with the therapy time.  Then came placement.  I told them that at this point, we are looking at just doing a 3 day school week so that Wade can still go to his regular sitter 2 days a week to get that social interaction.  They stumbled a little, but said it was doable and he would just be counted absent on the two days he's not there.  Of course they strongly suggest 5 days, and when we come back to ARD, if he hasn't met his goals, it's probably because he's only in school 3 days a week.  Blah, blah, blah.  One of the teachers did suggest that maybe he could still come 5 days and go to daycare after school since he would be in the morning PPCD class.  That was something I hadn't thought of, so I appreciated the suggestion.  While I know Wade will flourish in this new environment, as a mom, it's very hard for me to let my 3 year old baby go to school!!!!!

After that was out of the way, they said they were recommending he be in a self-contained class for 3 1/2 hours... Stop right there!  I jumped in and asked if there were other options (I knew there were).  Since this center also serves pre-k and the employee daycare center, there are definitely typical kids Wade can be with.  So, although I'm not completely comfortable with this time, we decided on a half-hour inclusion time out of 3 1/2 hours.  I settled for this since I'm contemplating the 3 days a week.  If, however, Wade shows them what he's made of, we will definitely be going back to ARD after school starts.  I'll give it a good 6 weeks for everyone to settle into a routine, then reassess the situation.

So, it's official.  On August 23, my baby will be starting school!

Monday, May 10, 2010

And so it begins...

I've been off the blogging scene for almost two years now.  I went through and deleted all of my old posts, but I kept the ones that pertained to Wade.  I figure today is a good day to start recording our journey again because things are definitely changing.  Starting with our first meeting to enroll for PPCD.

Our first meeting was scheduled for today at 1:00 with Eagle Mountain Saginaw ISD.  We still are not 100% that Wade will attend PPCD in the fall, but I want to make sure I've researched all of our options in order to make the best decision.  Since he turns 3 next Saturday, we have to get the ball rolling.  Technically he can start school the day he turns 3, but since it's the end of the school year, we're definitely opting to wait until fall to begin.

Things did not start out on a very good foot.  When the diagnostician came out to greet us, she told us that we were supposed to have brought Wade with us.  Well, when I asked over the phone if there was anything we needed to bring to the meeting, she should've told me at that point!  She said she assumed I would've known to bring him.  First of all, even though I'm a special education teacher and I've sat in tons of ARDs,  I've never had my own child go through the process.  Second of all, it was never explained to me that this particular meeting was for evaluations.  I thought it was for all the adults to discuss plans for Wade and evaluations would come later.  After that little mishap was cleared up, we decided to proceed with the evaluations we could do without him.  We now have to take him back Thursday morning so he can be assessed by the OT, PT, and speech therapist.  Our ARD is now scheduled for this Friday at 3:15.

And so it begins.  Our official start to the world of special education in the public school system.  I have to honestly say, I'm NOT ready for this!