In The Beginning...

The Beginning of our journey 7 years ago...

This is a unique time of year for me...every year, since 2010.  Obviously we are transitioning and preparing for school to start, but it was this time, 7 years ago, that the life we saw ahead began to look so very different.

I made a trip to Amarillo this last weekend with the boys.  We visited my Dad and Karen and I was able to see some of my dearest friends...a middle school/high school friend, my college roommate and a friend from when Darin and I were first married.  It was a beautiful opportunity to be with my boys, share old memories and make new ones!!  I hope to recap that trip here the next time I find some time.

  

But for now, I want to share some old emails I found that I sent out around this time of year in 2010.  The crazy part about it, is that we were packed up and ready to head to Amarillo this time 7 years ago too.  The same kind of trip...headed to see my Dad and Karen and also to visit my college roommate.  Tessa had been fighting a pretty bad ear infection that should have cleared up with the antibiotics...but since it hadn't, we made the conservative/cautious decision to make a quick appointment with her doc before we left town.  We had no idea that the doctor's appointment would be followed by an immediate hospital stay and the news of something that would change our lives forever.

This was the last picture I took of Tessa before we were met with information that would add clarity and change the way we did life from that day forward.

Tessa was NOT a happy baby.  She looked adorable the morning of her appointment, but the look on her face is all we ever saw.  It was her normal...and maybe on this day, a bit worse since she was also fighting an ear infection.  But this was her...never happy, never smiling...just sweet baby Tessa...that took all of our energy, all of our sanity, and had us in a constant state of desperation to calm and help her find peace and rest throughout her days and nights.  We were holding out for the 6 month mark for her to 'grow out of the horrid colic' that had also plagued Parker...but Parker's wasn't near to the extent it had plagued our little girl.

Thursday July 29, 2010

Saturday July 31, 2010

I'm going to caption this one below so that you can see the drastic difference between Thursday and Saturday.  Wow.  This hit me like a ton of bricks yesterday as I was reading through old emails and remembering this time of year, 7 years ago.  This is probably my most favorite picture of all time...with her IV Hat and all.  That GRIN....those CHEEKS....we had NEVER seen those before.  Tessa was born 4/8/2010...and for 3 1/2 months, life had been hell...and for the very first time, after hellish tests...a multitude of questions...and so many mysteries surrounding what plagued her...we had suddenly found ourselves in this new environment...in a place where we were receiving answers....and we got this...and God was gracious enough to allow us to capture it on camera.

Tessa experienced a seizure on Thursday evening...the day we checked her into the 10th floor of Baptist hospital.  We didn't know why we were there...but had been given some ideas of things to watch for and sure enough, after the stress of a spinal tap to check for the possibility of meningitis, I saw something strange for the very first time, a seizure.  On Friday morning neurology was on the team and by Friday evening we had seizure medication on board.  For the first time in over 3 months our sweet girl was able to experience life without seizures.  While our hearts broke both imagining and realizing how traumatic those first 3 months had been for her...our hearts leaped for the relief and new found joy we had with our sweet baby girl.

Here is the email I sent out to family and close friends on Monday August 2, 2010

(Before you read I will say...as you get toward the end of the email you will notice I was dead wrong about Tessa's hearing...it always annoys me when I re-read this email because while something tugged at me since her birth that something just wasn't quite right...I was completely wrong about her hearing.  We are pretty sure the CMV took her hearing completely by 2 weeks old because she passed her newborn hearing screening and around the 2 week mark is when we found ourselves completely helpless to console her.  I realize now, that our facial expressions and our closeness to her is likely how she was finding some comfort...not from any verbal or vocal efforts we were attempting)

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Hi everyone, I wanted to take a minute and try and bring everyone up to date the best I can. We plan to start a blog to have a centralized place to post updates, but until we get back home to our computer, I'll have to use my email.

 We have had a fairly peaceful couple of days. Tessa has only had one minor seizure since the scary one she had Thursday night (that we are aware of). In a strange way it was encouraging to see, because it gave us a better idea of what the doctors have been telling us to watch for. She started seizure medicine on Friday night and as long as it is working for her it will be what she'll be on for all her years to come. The only side effect is sleepiness, and so far hasn't been too bad. It has been amazing to get to know our baby girl...since she started the medicine we have seen a whole new side of our precious little angel!  We have had more peaceful moments in the last 24 hours with her than we've had in her almost 4 months now with us.  It is a blessing to have a baby that finally feels good enough to give us some incredibly special smiles !! We got pictures of them last night and I will share them soon.

Tomorrow will be a busy day. She will have an MRI done sometime tomorrow (don't know exactly when yet) and should know results within a few hours. We will finally know the results of the blood cultures from the blood work they did on Thursday. We will know the results of some urine analysis, which will tell us whether or not the virus is still active in her or not. Knowledge that will help us protect those that might come in contact with her that might not be CMV positive (most concerning for pregnant women that don't know if they have ever been exposed to CMV or not- I was CMV negative which is why we are where we are today). Tessa's pediatrician came and visited us tonight and wanted us to know that he is doing his research on all this and has a few things he would like for them to test tomorrow as well. It's a lot of details, so for now I will leave it at that. He also would like them to re-perform the hearing screening that was done at birth and also perform an eye exam. I swore to him that I just know Tessa can hear us..I've been singing to her since day one and I know she hears me :) Darin and I are preparing ourselves for a vision obstacle. I don't feel like she has ever really 'seen' Mommy or Daddy...but it's always been perfectly clear that she's knows by our voices that we are near. We realize that her lack of vision will more than likely be only one of many obstacles to come, but we'll be taking a day at a time and trust that the Lord WILL provide for every moment along the way!

I don't know that any of the information that we learn tomorrow will change anything. The neurologist has said that the damage to the brain has already been done, it will just be more evident to us the more she grows.

I'm not sure I've covered everything I hoped, but I figured there might be lots more to share tomorrow so at least that email won't be near as long now :)

We are so incredibly blessed by, and thankful for, all the thoughts and prayers sent our way. It's like I told my sisters today: I guess we just know that God hand-picked these two precious kiddos just for us and we're here to make our God proud with the responsibility we've been given!      

Thank you all for loving us, supporting us and joining us on this journey with our sweet Tessa Rayne.

-Whitney

Here is the email I sent out to family and close friends on Wednesday August 4, 2010

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Hi Everyone,

I apologize if the information I cover in this email is redundant to any of you, but if you don’t mind, please forward this on to whomever else you believe would like to have the information.

Today has been another very busy day.  In the last couple of days we have been forced to digest a combination of continued test results with discussions of future plans for Tessa’s necessary care. 

Tonight is our last night here at Baptist and tomorrow we will explore our options going forward with The Children’s Center in Bethany. 

Our goal was to begin a blog for Tessa once we returned home, but since we are not exactly sure when that will be, my sisters have offered to help us start and maintain a blog for Tessa until Darin and I are able to take over.  Many of you will notice that the information they have posted thus far is similar to the emails I have distributed to my friends.  I figured I had already gathered my thoughts once for an email, that they might as well use those to get the blog up and running.  As of this evening the blog is not up-to-date, but it will be very soon.

www.bynumfourblog.blogspot.com

All we can ask is that you will continue to share your thoughts, prayers and words of encouragement with us.  We have been overwhelmed by the love and support we have received since last Thursday, but fear that as the information becomes more readily available, we will begin to feel more isolated on our journey.  We have said from day one, that we welcome anyone that would like to join us on this journey ~ please continue to let us know that you are here with us….walking with us….caring for us.  It is my prayer that this blog will not only allow for up-to-date information for everyone concerned, but that it will also allow more time for relationships to form with those that have chosen to be a part of what God is doing in our lives.

Thank you again for the all of the love, support and prayers…they are carrying us through every moment of every day.

Looking forward to building relationships and watching a really special little girl impact our lives!

~Whitney