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)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Seizure and Updates

A grand mal seizure was not on the agenda for last Thursday night.

It was hard, emotional, and I may have ridden in the ambulance with her... but it's her daddy that's getting mad props from paramedics, doctors and nurses for Tessa's most spectacular setup!! So thankful she was stable and resting well during transport and our trip to the ER. 

Determining the culprit behind this nasty seizure is another story, but we were so blessed to have amazing professionals help us throughout the evening.

Things can change so fast. Thankful for incredible emergency and medical professionals that helped us navigate last night's seizure. We are resting and recovering back at home today. We got home in the middle of the night after everything checked out at the hospital. Thankful for no underlying illness, but ready to sort through other potential factors. Thank you again for all of your thoughts and prayers.

Tessa Wednesday to Thursday

Wed.

Thurs.

my exhausted mom look :( 

always such a completely helpless feeling...and so many tears cried

Tessa's neurology appointment went well. Her doc has always been amazing and we got some much needed clarity. We are going to up Tessa's rescue med dosage. It took us a little too long to recognize this last seizure, and unfortunately, the longer you wait to administer the meds...the harder it is for the meds to work. Lots of stress when a seizure lasts close to 40 minutes :( But now we have experience with another kind of seizure and we'll hopefully feel more prepared next time. It's an isolating place to live, so we can't express how much your prayers and encouragement have meant to us!! 

We had some entertaining family shenanigans to help ease the weight of a heavy appointment.

When you're a mama and you're still in a bit of a state of worry about your girl...and her sweet Para sends you a video and pics and the timing couldn't be more perfect.

The message: "This girl... she rolled herself over and started doing push ups😂😂."

Little Miss Mighty knows how to show her mama she's ok 😉 <3 :="" and="" back="" day...and="" each="" gaining="" her="" more="" nbsp="" ok="" p="" s="" she="" strength="">

Well, actually more than ok...I mean she's doing push ups for crying out loud! 

~Whitney

My Burden Carrier

Man, yesterday was hard.  

Navigating life with special needs is hard.  Being a mom is hard.  Being a working mom is hard.  Planning for things you never thought you'd have to plan for is hard, keeping your head up is hard, juggling decisions is hard, avoiding defeat and managing fear...it's hard.

I'm thankful My Creator is My Burden Carrier.

~ ~ ~ ~ ~ ~ ~ ~

I was giving Weston a bath last night and since it was just the three of us at home for the evening, I took Tessa in the bathroom with us in her wheelchair.  Her bath was next.  

As I am bathing Weston I look up and this is what I see...

My little girl.  

Ears off. Eyes off. Legs off. Sitting a bit awkwardly in her wheelchair and just gazing up.

My thought in that moment:

~One of those nights when you sit and wonder how it is that your beautiful little girl...in her natural state...can't hear, can't talk, can't sit up, can't walk... and yet somehow life goes on...joyfully for the most part. Thank goodness it's not on me.~

We are in the planning stages of a very big surgery for Tessa this summer.  One we had been told in those early years after diagnosis, to plan on.  For some reason I had more of the timeframe of age 8-10 in my head for this particular surgery...not 6-7.  I know it's basically the same...but it hit me like a ton of bricks.  We have been so very fortunate to have had very few critical care moments with our sweet girl...mainly centered around seizures.  And as far as surgeries go, only 3 and all elective: ear tubes, right cochlear implant and left cochlear implant.

~ ~ ~ ~ ~ ~ ~ ~ 

Spastic Cerebral Palsy is a beast.  

It's an ugly and stressful freakin beast.  It is the very reason for the surgery coming up this summer.  On my really bad days, I curse it.  For everything that it is and everything that it does to Tessa.  Between it and Epilepsy...there's a lot of cursing going on in my head.

  

I'm learning more about the surgery as the days pass and we are waiting to have a consult with the surgeon in late November.  It is a preventive surgery.  Preventive in that if we don't do it within the optimal timeframe, it could mean a much bigger, more serious surgery down the road.  

The surgery - Bilateral Femoral Osteotomy

This link seems to provide a pretty good overview of the surgery.  I honestly haven't read much of it because I tend to rely on the information given to us by the medical professionals that are specifically involved in Tessa's care.  I also usually wait to write anything until I have ALL the details (which we'll get in late November)...but for now, this will do.  From my limited knowledge base at this point, the surgery is necessary because Tessa does very limited weight-bearing (standing, walking, etc) and her ball and sockets are not forming and therefore her hips are not forming correctly.  This surgery will manipulate and re-position the ball of the femur in the hip socket.  The bigger more serious surgery we are trying to avoid down the road? ~ hip replacements.  It's a lot to talk about and consider for our 6 year old little girl.

Preliminary Planning has begun.

Again, without having all of the specific details, we have begun our planning around the broader details that we know for now.  We are planning for the surgery to occur at the beginning of the summer and we are planning on a 6-12 week recovery for Tessa.  We are so thankful for Darin's teaching job and the flexibility it allows us in the summer to tend to these very things.  I can't imagine what things would be like if Darin and I were both having to plan and consider time off of work to accomodate a necessary procedure like this.  But ya'll, it's still so hard.  This is when being a working mother challenges every fiber in me.  The reality is, I can't be there in the way I desperately want to be there for Tessa during the entire timeframe.  The desperation in me screams 'drop everything and run...do it...be there...for all of it...whatever it takes'.  But I know God does not desire desperation for us in our lives.  He calls us to trust and have faith that He will provide for what is up ahead.

Thank goodness it's not on me.

It's On God...This Beauty is His...

She is simply stunning! 

6 years old, holding her bottle, ready for bed and ~ Stunning! 

God has shown us that His ways...His provisions often look very different from what we think and expect. We are faithfully anticipating His goodness in this season of planning and preparing.

Psalm 32: 8 (NIV)

"I will instruct you and teach you in the way you should go; I will counsel you with my loving eye on you."

~Whitney

Botox Injections - Round 3

Big morning for this sweet girl. It was a rough start with a process she didn't know, but she did amazing as usual~even got a few smiles while we waited!

New doctor ~ different approach ~ but everyone was awesome and after the sedation she got to go home with Daddy to rest! 

We are anxious for her to experience much needed physical/muscle rigidity relief that the botox injections provide for her.

Prayers for her: for success of the treatment, physical peace and overall unquestionable benefits.

And prayers for us: to continue to feel confident in the preventive measures we take very cautiously for Tessa throughout her life.

Clifford definitely helped pass the time...

I hope she knows how MUCH those smiles mean to her mama!

So thankful for how peaceful she was during and after the procedure.

And thankful she was able to go home with Daddy to rest :)

~Whitney

Exciting Follow Up!

These were from the waiting room before Tessa's follow up appointment with her cochlear implant surgeon.  We were still right-ear-less. But we were hopeful and waiting to see the doctor to show him how much improved our swelling was!!! ‪#‎waitingroomentertainment‬ ‪#‎somanysmiles‬

Amazing stuff right here!!

At today's follow up appointment, Tessa's doctor was as thrilled as we were to see that her swelling is almost completely gone!! There is a very small amount just adjacent to her implant...so we were given the okay to try her processor this evening! Her doctor even said that this has taught him to be more patient...with the healing process. Leave it to Miss Tessa to help teach her doctor a little something ;)  No needles or miserable procedure necessary!

THANK YOU to all who have been praying for Tessa! It's been a very long two weeks and today we are just so thankful and excited!

(some cuteness just before we put her processor on)

This is her first time with her right ear on in over 2 weeks. It is set at a very low volume, but we are just praising the Lord that it WORKS and she is tolerating it so well. She seems pretty excited about it too! :)

These are her 'ready for a walk with both ears on' faces!! 

‪#‎restorationandjoy‬

So thankful for such an exciting update!!

~Whitney

Recap: Tuesday's ER Trip & CT Scan

Recap of this week from our Ten Tiny Toes Facebook Page:

June 9th 11:53 a.m.
Sorry to be a little vague for the moment, but we would covet your prayers for Tessa right now. She experienced head trauma Sunday evening which resulted in an ambulanced ER trip. Everything seemed to check out ok. But throughout the day yesterday, the whole right side of her head became severely swollen. We are back at ER for a much needed CT scan that we wish would have been done on Sunday. We know there's a chance that her right cochlear implant potentially took the brunt of the impact. But other than that, there are so many other unknowns. They are ordering the CT now...so now we just wait.

June 9th 2:46 p.m.
UPDATE: CT Results- no skull fracture, no bleeding, no contusion. Really good news. Seems that what we are dealing with is a hematoma- external swelling at the CI site. ER doctor just talked to Dr. Wood (Tessa's cochlear implant surgeon). We are headed over to his office once we are discharged here to determine what needs to happen next.

June 9th 5:02 p.m. UPDATE: Results from appt with Dr. Wood. Definite large hematoma positioned around her right CI. We will be applying pressure, ice and heat over this next week to hopefully see some natural improvement in the swelling. It could take a full 2 weeks before the swelling is gone and before any determination can be made about the condition of the implant. Our prayer is for the swelling to decrease on its own and to avoid having to open it up in order for it to drain, which would cause additional concern for infection, etc. Our prayer is also that the implant is still positioned correctly and functioning properly once swelling is gone in order to avoid any corrective surgeries. Lots to hope and pray for over the next 2 weeks.

June 9th 8:40 p.m.
Following doctor's orders in true Tessa-style! ‪#‎icingwithasmile‬

~Whitney

I Asked the Question...

Last night, for me, everything came crashing down.  Tessa is doing better and we are thrilled...we are seeing improvements with each passing day.  And maybe that's why I asked the question...now that she is improving, maybe my mind has a little more room to think/question.

The question?
......

What if she hadn't been right there???  The emotion and fear was overwhelming.  I was re-living the moments from Friday night during the seizure, that she wasn't taking a breath, when she should have taken a breath.

What if we hadn't laid her down in her nap nanny right there in the kitchen with us Friday night to fall asleep? What if we had put her in her room, in her own bed, to sleep that night?  The seizure was silent.  I only noticed something because I was sitting right there and saw her eyes pop open after she had been asleep a good 30+ minutes.  We only reacted because she was silently gagging and it seemed as if maybe she was trying to cough or maybe choking.

As I was on the phone with the dispatcher that night, he had me kneel down by her and say "now" every time she took a breath in.  I started and went consistently for a bit....and then a break....I don't know how long the break was, obviously nothing serious in the whole scheme of things...but the way it felt in the moment was long enough to think...to question...if she was going to take another one??

What if she hadn't taken another breath?  What if we had put her in her room that night and never knew what was happening?  What if???

How do you experience something like that and not experience fear?  How do you not experience moments of complete despair imagining a different outcome if we hadn't been right there?  It's a lot. It had me pleading with time to stop and stand still while I tried to process it all.  I told Darin through my tears last night that I know we are not in control.  God has made that so powerfully clear to us, time and time again, and we are so thankful that we're not.  But the fear...the emotional toll an experience like that can take on your heart and soul...it can feel impossible to overcome.

It can feel impossible and then I am reminded by the One that loves us and created us...that the plans He has for us are good.

Jeremiah 29:11 New International Version (NIV)

11 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.

Isaiah 55:9-11 New International Version (NIV)

9 “As the heavens are higher than the earth,

    so are my ways higher than your ways

    and my thoughts than your thoughts.

10 As the rain and the snow

    come down from heaven,

and do not return to it

    without watering the earth

and making it bud and flourish,

    so that it yields seed for the sower and bread for the eater,

11 so is my word that goes out from my mouth:

    It will not return to me empty,

but will accomplish what I desire

    and achieve the purpose for which I sent it.     

From Jesus Calling yesterday:

Approach this day with awareness of who is boss.  As you make plans for the day, remember that it is I who orchestrate the events of your life.  On days when things go smoothly, according to your plans, you may be unaware of My sovereign Presence.  On days when your plans are thwarted, be on the lookout for Me!  I may be doing something important in your life, something quite different from what you expected.  It is essential at such times to stay in communication with Me, accepting My way as better than yours.  Don't try to figure out what is happening.  Simply trust Me and thank Me in advance for the good that will come out of it all.  I know the plans I have for you, and they are good.

The exhaustion from the last week and a half makes it very challenging to process anything...especially the intense emotions and the fear.  But what I noticed in scripture last night was that there was nothing but peace and clarity in God's word.  He will accomplish what He desires and His desires for us are good.  His plans include hope and a future.  

The clarity in that message wins the war over fear.  I am human, so the fear will exist...but the critical point is choosing to adjust my perspective so that my thoughts and emotions are ruled by these very promises in God's word.

~Whitney

R&R

Yesterday and today we rested.

We were thankful for Tessa's appetite for Biscuits and Gravy!

And we rested some more.

 ~Whitney

Grand Mal #3

These pictures were taken around 9:00 pm Friday evening...

 little miss adorable!

at 10:30 things suddenly changed and by 11:15, this was my view. 

Tessa had a really rough week last week.  Last Sunday she experienced about an hour+ of throwing up.  We kept her home from school on Monday and she had a good day.  We chalked it up to a less-than-24 hour bug of some sort.  

She went to school on Tuesday, and then by Tuesday evening she was dealing with lots of drainage and coughing.  With limited trunk and neck control, these types of experiences take an incredible toll on her little body.  Her nights and mornings were the worst.  Darin and I spent our nights doing everything we could to try and keep her comfortable...not an easy task.  By the afternoons, she would have perked up after clearing most of the mucus out, but then it would start all over again every night when it came time to sleep.  It was of course exhausting, but also devastating to be so limited in the ways we could help her.  

Darin kept Tessa home on Friday in hopes to give her an extra day to her long weekend to help her get to feeling better.  She had a really good day on Friday.  She had an afternoon mapping appointment at Hearts for Hearing that went well and overall, did great that day.  

We had a later-than-usual evening on Friday but as you can tell from the pictures above, she was all smiles and giggles even up until 9:00 p.m. at night.  Shortly after those pictures were taken, she had all of her nightly meds and was fast asleep in her nap nanny.  

Then around 10:30 we noticed something was off.  She had opened her eyes and appeared to be needing to cough or like she was choking or something.  Then she started spitting bubbles out of her mouth.  It didn't take long for Darin and I to realize that she was having a very intense seizure.  Once Darin had picked her up and was patting her back, we could see in her eyes that she was not responsive at that point.  We immediately took her into our room and laid her on her side on our bed.  By 10:34 we were administering her first dose of Diastat.  We gave it the two minutes that we give it to work, and as she continued to struggle to breath, we immediately administered the second dose.  

By 10:36 I was on the phone with 911.  Beginning to end, we think the seizure lasted between 15 and 20 mintues.

The ambulance arrived promptly and Tessa was slowly beginning to breath more normally.  She was still very out of it...not only because of the seizure, but now also due to the amount of medicine we had just administered.  Our protocol to call 911 is due to the risk of respiratory failure after administering that much anti-seizure rescue medicine.  It's not that we don't think the seizure will stop after two doses, so far it always has, but it's because we need medical professionals involved with monitoring her vitals after having to introduce that much medicine to her system.  We also have no idea what things would look like if the seizure didn't stop after the two doses, or if for some reason she began seizing again even after the max dose of Diastat.

Although this is something we could never anticipate, we weren't completely shocked by the grand mal.  It was a little surprising considering how good of a day Tessa had on Friday, but overall, she had been through so much in a week....exhaustion was an understatement.  Her little body was spent and in such a weakened state.  

Tessa's vitals remained stable.  She was breathing well on her own.  While we were at the hospital they ran a bunch of different tests to help determine if there were any underlying issues/illnesses that could have contributed to the onset of the grand mal.

They did a blood draw to check her organ function and blood cultures.  They checked for a UTI, they swabbed for the flu, and did chest xrays to check for pneumonia.  Everything came back looking okay, except that the lung xrays did show signs of viral bronchitis.  This made perfect sense after the week she had, but we were so thankful that no bacterial infections had set in and we weren't dealing with pneumonia.

It was a very long night.  The ER doctor consulted with Tessa's neurologist and after all of the testing they ended up administering Keppra in her IV and gave us instructions to increase her daily dose of Keppra from 5 mLs twice a day to 6.5 mLs twice a day.  We were on our way home by 4:30 a.m.

Saturday and Sunday we rested.  Tessa was still dealing with the viral bronchitis and we were still doing everything we could to keep her comfortable.  

~Whitney