Thursday, December 8, 2011

December 9, 2010

December 9, 2010, the Day that Time seemed to stand still.  I remember it like it was yesterday.  I left work early, excited for my 20 week ultrasound.  We had already found out that we were having a boy, but who doesn't love seeing your baby in a 3D ultrasound.  Kevin and I had previously decided that we were going to take Jake out of school early, so that he could see his baby brother on "tv".  Jake was just starting to get used to the fact that there was a baby in mommy's belly. 

So the plan was for Kevin to pick up Jake at school and then meet me halfway, since I was coming from work, and then we would all ride down together.  I left work with no incident and was on my way to meet Kevin when he called me and said that there was major traffic and he hadn't even picked up Jake yet.  Mind you that we were supposed to meet up within the next 20 minutes, and Jake's school was almost an hour away from where we were to meet.  I was annoyed, but knew there was nothing he could do about it...traffic was traffic.  So we finally decided that I would head to the doctor's office by myself and Kevin and Jake would meet up with me when they could. 

So, off I drove.  I got there in no time and was early, so I sat in my car.  Kevin called a few times to give me updates.  We ended up getting in an argument because he claimed to not know where to go (even though we had already been there a few times between Jake and Austin) and didn't understand the directions I was giving him.

I went in by myself and was called into the ultrasound room shortly after.  The technician had an "intern" with her and asked if it was ok if this girl sat in the room as well.  I agreed that was fine.  And so the ultrasound began.  The techician was VERY talkative throughout the ultrasound, mainly to explain to the intern what each part of the body was.  I enjoyed hearing everything in detail and just watched amazingly at my lil guy in my belly.  He was perfect.  After a short while, Kevin and Jake arrived and joined me in the room.  Jake was super shy and quiet and I think he was a lil upset because he didn't understand what they were doing to my belly.  He also didn't really understand that the "thing" on the tv was his little brother who was inside my belly. 

The scanning continued for some time, with the tech talking through every part of body.  Then she got to Austin's head....and there was SILENCE.  And I mean complete SILENCE.  I knew instantly that there was something wrong.  No one in the room said anything....and we just watched as she scanned Austin's head, over and over.  All I saw was black on the screen.  Lots of black.  When the tech finished, she got up quickly and said "The doctor will be coming in to talk with you" and then left the room.

I looked at Kevin and said "there's something wrong with his brain".  I remember saying to him that I thought it was very weird that the tech was soooo talkative the whole time, except when she got to his head and then she was so quiet it was almost surreal.  I remember telling him that it looked like the baby didn't have a brain, because all you could see was black.  And I remember Kevin telling me to "knock it off" and that I was exaggerating and to stop analyzing something I had no idea about.  So, Kevin, Jake and I all sat there waiting in the room for the doctor.  We tried to make small talk as we waited, tried to explain to Jake about his lil brother being on the tv.  And we waited.  And waited.  Seemed like forever.  I really have no idea how long it was.  I just remember waiting.

And then...the doctor, tech and intern came into the room.  The doctor introduced herself to me and then began to scan me again.  She didn't really say anything, but she was scanning Austin's head and taking measurements.  When she was finished, she said that she had something she wanted to talk to us about, to get cleaned up and then come into her office.  My heart sank.

Within a few minutes, all three of us were in her office.  She asked if Jake would go out and stay with one of her co-workers to give us some time to talk.  I knew Jake wouldn't go with anyone else, so he stayed with us and sat on my lap.  The doctor called the genetic counselor in and the two of them told us that Austin had a high accumulation of fluid in his head.  We watched as they drew a diagram of what was happening and talked about severe hydrocephalus.  It was all so overwhelming and all I really remember were the words "this is devastating" and "I've never seen it this bad so early on".  We sat and listened to them tell us all of these horrible things.  Things that I can't even bring myself to write right now.  And on top of it, I had my three year old with me and had to be strong for him. 

We were asked if we wanted to do an amnio to see if was a genetic issue. Kevin and I decided that we wanted an amnio and it was scheduled for the next day.

We walked out of that office and didn't say a word to each other until we got out of the car.  Still trying to stay strong for Jake who had no idea what was going on, we both cried and sat in disbelief.  We called our parents from the cars and drove to my mom's house.  My mom was able to distract Jake as we sat there and cried together, trying to figure things out and praying for the Lord to watch over and heal our baby. 

It was by far the worst day of my life.  I can't even begin to describe my emotions.  That day started a whirlwind for us.  I can't believe it has been a whole year.  We have all been through so much in this past year.  Things that no one should have to go through.....and to the complete opposite extreme, MIRACLES that are beyond anyone's imagination.  I will never forget that day that set things in motion.

December 10, 2010 I had an amnio.  We also scheduled my Fetal MRI for that following tuesday (December 14th).  We then sat back in that doctor's office, this time without Jake who we appropriately left in school.  As we were waiting, we noticed that she had graduated from the University of Texas, in AUSTIN.  I pointed it out to Kevin, as up until that point, we still had not decided on a name for our little guy.  Austin, that was a cute name I thought...and different.  I didn't know any Austins.  It was a contender in my eyes.  We sat in her office and listened to her again tell us horrible things.  Then I had to go over to the hospital across the street to get the shot because I'm RH neg and as we sat and waited for them to make the shot, Kevin read a magazine.  And there it was again...the name Austin.  This time it was a person who had wrote a question to the magazine (one of those 'Ask blah blah..' articles).  It was then, when we were sitting in the hospital, that we decided that our little guy's name was Austin.  It was the perfect name for him.  And perfect timing, almost like it called to us...

Austin has surpassed all that I could ever imagine...he is so happy....and such a perfect little boy.  I love him so much and can't imagine my life without him.  I'm so blessed to be his mommy and I know he is destined to do great things!!!!   I had a revelation last week.  I was in the field with one of my workers and we had to visit one of her families.  This family happened to be a family I had worked with, but I had not had any contact with them in about 5 years (or more).  I told my worker that I didn't even know that the family would remember me, since it had been so long since I had seen them.  But we got to the house and walked in, and guess what....they did remember me.  Kinda crazy how you leave your imprint with some people and how certain people seem to pop into your life for planned reasons, unbeknownst to us.  At any rate, this family had a child in their home the last time I saw them (this child was about 6 months old) and it turns out that he is now about 6 years old.  Not really significant other than the fact that this child has a shunt.  A SHUNT!  Didn't mean anything to me back then, but to see the child today, you would have no idea that he has a shunt.  He is a healthy child, who plays football, loves baseball, loves to color and loves to play video games.  A "normal" life he leads.  It was almost as though it was meant to be....meant for me to see this boy again, as I remember him from years ago.  Almost as though God was preparing me for what was to come.  (Often how I tell the story of being in a wedding when I was 9 months pregnant with Jake...and walking down the isle with the grooms brother, who had a cochlear implant.  I had no idea what a cochlear implant was at the time, but a few months after the wedding, I had never imagined that I'd be looking into cochlear implants for my own child).  Just amazing how God prepares us for what life will bring, in our own little ways.

And look at my two miracles.....just look at them....I may not always think that I am the most prepared I can be for my boys' disabilities, but I know that God is with me and is guiding me every step of the way.  True blessings...





Monday, November 21, 2011

And we love it.....

Austin has made a new friend, Jake's "Thanksgiving Gund Bear".  He just watches him and stares at him and can actually sit through the whole story (which I can barely sit through).  Just makes me laugh.  Totally distracts him.


Gund Bear also is a great help with tummy time.....



And encourages sitting up....


Or maybe its the camera case that is helping with sitting up....


Decisions, Decisions....

Wednesday, November 9, 2011

Long and Overdue

 Guess who's BACK!!!   The little guy is going to be 7 months old on saturday.  I can't even tell you where the time has gone.  Since I've been back at work, the days just fly by.  At his six month well check up, he weighed 18 pounds (although I'm sure he's at least a pound heavier by now).  He remains in the 75% in all areas.  He's now wearing size 12 month clothing comfortably.  He just began physical therapy two times a week and is doing great.  We've been working on getting him to put more pressure through his arms and he's getting there.  He is just about sitting by himself and is holding his own bottle.  He LOVES vegetables (not so much the fruit..go figure).  And is HAPPY!  ALL THE TIME....JUST HAPPY!   What a pleasure he is...

He got to experience his first snow storm already (we got over a foot of snow) and then two days later it was Halloween!  Crazy weather....

Here are some recent pics...









Wednesday, October 5, 2011

Cold Season already?!

So, we all survived my first week back at work.  I'm exhausted.  Been getting up at 5:15am, to get myself ready, both the boys ready, drive them 25 minutes away to school, then drive another hour to work...all by 9am!  Its insane, but has to be done. Austin has adjusted well.  Kevin and I joke all the time at what a complete opposite Austin's personality is than Jake's.  Austin goes with the flow, is always happy and just hangs out.  Jake is a nightmare in the morning, tends to be rather bossy, and does not like change in his routine.  Its rather amusing.

Austin got sick within 3 days of being at daycare.  And he's sick....had the fever, running nose, coughing, irritabililty.  Feel so bad for him, but I know it is gonna be around for a few months now.   Otherwise he seems to be doing pretty well in daycare.  Still hate the fact that I'm not home with him and I only get to spend about two hours a day when I get home with the boys.  Has to be done though.

We had a few doctor's appointments this week.  Monday started off with a trip to NYC for our new neurosurgeon.  We switched due to insurance issues and the fact that our original neurosurgeon doesn't participate in any insurance plans and we have to pay out of network rates everytime we saw her.  So, we made an appointment with a new surgeon, one we have seen before for consults, so we knew we liked him.  He took one look at Austin and said "wonderful".  He continued to tell us how he is more of the "hands off" philosophy and doesn't really believe in a lot of MRI's. He also doesn't like using programmable shunts because he explained that statistics show that its not usually the value that leads to shunt malfuctions.  He said that he doesn't need to see Austin again until his first birthday, at which time he will do another MRI.  (We have been going much more frequently to the other surgeon, so this was a pleasant surprise).   On the way out, as I attempted to pay my copay, we were informed that this surgeon has just decided to stop participating in my insurance plan and that the hospital also no longer takes my insurance!  Nice...love hearing that doctor's don't take your insurance after you switch to them for that very reason!  So, what next?  Well I think eventually we'll switch the family over to Kevin's insurance, who the surgeon does still participate with.  Just creates an issue as to Jake's doctor's, but we'll work something out.

Today we went to the opthamologist.  Austin is still pretty farsighted.  He is at a +5.5, and normal is +2.  But a few months ago, he was a +6.5, so his eyes have gotten better.  I really have no idea what the numbers mean, but at least I know they are going down.  We have to watch for crossing, and we are going back in another six months just to keep an eye on them.  So today was good.

Been trying to get a good picture of the boys together, but it proves impossible these days.  When one is smiling the other is not.  And Austin tends to blink at every flash now.  These were from yesterday.  Boys wore their matching outfits to school for "picture day".


Monday, September 26, 2011

The dreaded day has come....

I'm going back to work tomorrow!  UGH!  I've really enjoyed my maternity leave and I'm very thankful that I have a job that allows me to take this much time off.  But alas, all good things have to come to an end.  And I'm back tomorrow.  Austin is going to start daycare and I'm not pleased about this.  I know once he gets mobile, it will be much easier.   I'm just worried that they won't follow through with all of the physical therapy he needs and I certainly don't want to see him regress at all.  Jake is very excited though that Austin will be at the same school as him, so I know he will keep an eye on him throughout the day. 

In other news, Austin learned a new trick last week.  He ROLLS!  He has mastered rolling from his back to his stomach, but not so much from his stomach to his back.  Its very hard to keep him on his back now, and he's really enjoying his tummy.  I got it on video...




He is also loving his exersaucer (with a blanket around his middle to keep him snug in place since he's still too little for it).  Jake is an excellent helper with showing him how all of his toys work :)


Say a little prayer for Austin that he adjusts well at daycare and that the teachers follow through with the necessary therapies and precautions for him....mommy is soooo sad :(

Monday, September 19, 2011

Happy Birthday to the big boy!

4 years ago, we welcomed into this world the most perfect little boy any parent could imagine.  Little did we know that day that Jake was deaf and his diagnosis would start a whirlwind of events that would effect everyone around him (for the better).  As parents, we have had to watch our son go through numerous doctor's appointments (more bloodwork than I can even remember), therapy appointments, two surgeries, two ER visits, two leaves of absences from work, three daycares/schools to accommodate his therapies, thousands and thousands of miles on our cars driving to appointments a few times a week, and changing our lifestyle to adapt to a child with hearing loss. 

I wish I could say that these past four years have been easy.  They haven't.  We have had to do things to help our son learn how to listen and eventually speak; things other parents take for granted.  We have had to adapt to having a child who can't hear us during bath time, pool time and sleep time.  We went through a year of having our son wear a hat at all waking hours of the day because he would take his "ears" off and put them into his mouth, or throw them across the room.  We had to learn sign language so that we could communicate with our son.  We have had to watch our son have balance issues and be the one to always fall when all of his friends were already running and jumping.  We have had to hear alot of comments (some not so nice ones) about our son and "what those things are on his head".   I could go on for days about how much our lives have changed.  And more importantly, how much Jake has had to endure.

But all in all, I wouldn't change this experience for the world.  We don't take anything for granted.  Every milestone, every accomplishment, is so amazing.  And the most important thing of all is that Jake is the best little boy I know (and I'm not just saying that because I'm his mom). 

We have watched our son grow into a little man and he is a pure delight.  Kevin and I are able to look back at these years and laugh at all we've been through.  Yes, laugh.  And because of all he has been through, and all of his hard work, he is in a mainstream Pre-Kindergarten class (one of the youngest in his class by the way) and at the same level as his hearing peers...who I might add, have been hearing over a year longer than him!  Pretty awesome lil guy he is!!!

Oh how he has changed in these past four years....

4 weeks old

1 year (enter HATS)

2 years

3 years


4 YEARS!!!

HAPPY BIRTHDAY TO MY FAVORITE BIG BOY.  LOVE YOU BUDDY AND I'M SO PROUD OF YOU!!!

Tuesday, September 13, 2011

5 months old!

Austin has a new nickname...Gooser.  (Silly Goose has migrated to "Gooser")  He loves it, haha.   If you know me, you are not surprised, as I have nicknames for everyone!   So, the lil Gooser turned 5 months old yesterday.  I can't even believe it.  I came across an email today that I sent out to my family and friends a few months after we received Austin's diagnosis.  Just reading that email again made me upset.  If I had known on that day as I wrote that email, what kind of post I would write today, 8 months later, I would have been so grateful...and most importantly, I would have enjoyed the remainder of my pregnancy. 

Austin is doing great.  PERFECT actually.  We are never "out of the woods" so to speak, but I really couldn't have asked and prayed for him to be any more perfect than he is.  Several people have asked me to call up those doctors who were so negative during my pregnancy and let them know how perfect Austin is.  Several people want me to scream at those doctors, to tell them how horrible they are to have put our family through what they put us through.  But, thats not the type of person I am.  And I really, truly, 100% believe, that Austin is a miracle.  I really believe that those doctors were telling us the truth about how much fluid there was, and what they have experienced seeing ultrasounds like Austin.  I do feel that they could have "educated" us better and maybe went about it all differently, but all in all, I'm not mad.  This experience has strengthened my faith so much more.  I put my faith and trust in the Lord, and I received a little angel. 

And an angel he is.  He is such a happy boy.  Smiling and laughing all the time.  He now weighs over 16 pounds.  We started rice cereal a few weeks ago.  He is still trying to get the hang of it, but he is doing well with it.  He still gets physical therapy once a week and he is doing very well with it.   He is putting lots of pressure on that shunt side of his head now.  He rolls over onto both of his sides from laying on his back.  He does well with tummy time.  We are working on getting him to put more pressure onto his hands on tummy time.  He reaches and grabs for toys and tries to sit himself up when reclined in his bouncy chair.  He also puts nice pressure on his legs.  The only thing he doesn't do (that he should at this age) is reach and grab for his feet.  We are encouraging that though and I'm sure he'll pick it up quickly. 

Here are some recent pics and a cute video.  (He is laughing at his brother saying "Wipey, Wipey" as he was swinging a wipe around)