Update: 09/11/2016

Last year - this brilliant, kind man made his way into our life. We were sitting in the PICU and in he came barging into our tiny little room with confidence, compassion and knowledge.

He quickly became our "quarterback" and was the go-to for many of the different teams we were working with as we scrambled through diagnosis to see what was happening with our baby...

He was the first one to say to us: "My belief is Brodie has what is called Biliary Atresia - the surgery will confirm this."

He also was the one to take the wind out of my sails: "Brodie is too old for Kasai (which is the other option for babies with Biliary Atresia) - Liver Transplantation is the only solution."

He brought me back by telling me: "There is such thing as living donor transplantation and the Cleveland Clinic is a pioneer in the nation for this."

I sucked up and held on to every word he said - my little notebook and pen furiously trying to capture every word (so I could google it when he walked out). I am pretty sure there was a point where he was thinking "seriously" I need to spell this word one more time :P but he never let on Side note - I think my notebook contains art work, words and thoughts from "Dr. Krishnan" he has spent so much time with us.

He started off as our Dr. and has quickly become part of our Tigue Tribe and Brodie's Good Vibe Tribe - like one of the family. He is a healer, fixer, scientist, doctor, philosopher and most importantly our very important kind friend. Please meet Dr. Radahkrishnan.

If you have a child in your life that has Gastrointestinal challenges do not hesitate to reach out to the team at Cleveland Clinic Children's they are nothing short of amazing.

#DOnateLIFE #sliverofliver #brodiesgoodvibetribe #biliaryatresiawarrior#TIGUEtough #give2live #BGVT #thegoodstuff

Update: 09/10/2016

Life is full of uncertainties, twists and turns and peaks and valleys... One thing that I do know is when tragedy strikes supporting one another through love, Kindness, prayer and compassion allow those who are weak, wounded, scared, determined, fighting - to find foundation, believe and feel unity.

Thank you @brodie's good vibe tribe for everything you have done for us this past year. #DOnateLIFE #brodiesgoodvibetribe #thegoodstuff#sliverofliver #tiguetough #inthevillage #biliaryatresiawarrior #give2live

Update: 09/10/2016

So. National TV. Happening. My favorite and the best Dawn KendrickWKYC Channel 3 - Cleveland shared with us tonite how we will be on the T.D. Jakes Show dropping on 9/12!!! Our journey with Cleveland Clinic Children's and the amazing gift of life! We will be on Friday. Cannot believe this life. #DOnateLIFE #sliverofliver #brodiesgoodvibetribe#biliaryatresiawarrior #TIGUEtough #give2live #BGVT #thegoodstuff

http://www.wkyc.com/…/brunswicks-brodies-good-vib…/316358326

Update: 09/09/2016

A year ago today we went to a Pediatricians office - Dr. Karen Vargo with Cleveland Clinic Children's - after hearing and listening to what I was telling her - I am convinced she saved Brodie's life.

She sent us to Main Campus Cleveland Clinic where we were immediately admitted into the PICU.

So grateful for her instinct, reaction and immediate action - if she would have sent us home and waited to get results Brodie could have bled out on his brain or worse.

There are no words to someone who saves your child's life. Thank you. You are a hero.

#DOnateLIFE #brodiesgoodvibetribe #sliverofliver #TIGUEtough #BGVT#biliaryatresiawarrior #give2live

Update: 09/01/2016

Update: 09/01/2016 - Well let me be the first to tell you that the west coast is the best coast for adulting and not tatertotting. The west coast is still winning and we haven’t been there for six days.

Nights have been sleepless as the nuggets are struggling to recoup from the time change adventure we just had. So if you see us walking the streets of CLE and we look like little tired monsters feel free to cross the street and do not make eye contact. Or just turn around and run – no judging here.

It’s September. Fall is officially here – where did the sweet summertime go? There are some super exciting things in the works that I cannot wait to tell you about – we are working on details before we can release info but I can tell you BGVT is about to start moving mountains (even if they are little mounds that will turn into mountains one day)….

As for today - If you don’t mind… I will relive the events of last year with you over the next couple of weeks. Many of you started following our journey as we were in the midst of transplant.

Biliary Atresia is so under the radar that if you learn something about this horrible disease and hear about some of the symptoms, maybe you might be able to help someone else.

One Year Ago:
September 1st life at this point last year was so different – I was back at work from maternity leave, getting excited for the three-day weekend. Harper was getting ready to go to pre-school – I mean like what. How could my biggest little be going to school?? We were adjusted to the parenting of two game and learning every day what this new life was like.

We were getting ready for the holiday weekend… About to go road tripping down to the lake with one of my college besties and her littles. The kids were excited and so were we - one last summer fling at the Lake *sigh * life was great.

Little did we know that in five days we would be making a horrifying discovery.

Brodie had always been very “tan” his skin being a dark golden color (very different from his porcelain skinned sister) we had joked about him being our “golden child” and wanting to set the record straight early with us. He also had slight yellowing of his eyes in the corners and we also felt like his tummy was larger than what it should be.

We had brought these concerns up numerous times to our pediatrician at the time and we were reassured that the skin tone and yellowing of the eyes would go away – he was a breast milk fed baby so more vitamin D and sunshine. As for his tummy he hadn’t formed his muscles yet and it would come with time – he was enjoying his milk.

He was on track growth wise hitting in on the charts at 70 – 85% in the areas they track, had a hearty, healthy appetite and was hitting milestones just the way you should as you develop. There were no warning signs.

If I remember correctly – this evening will be the evening – cutting any baby’s fingernails is terrifying that you might just cut in the wrong spot. And then blasted. Just like Britney says – OOPS I did it again - I had just barely nicked the tip of one of Brodie’s fingers and it bled for 2.5 days.

Just to clarify – it wasn’t like a clotting bleed – it was a consistent change a band-aid every couple of hours – wrap it in gauze – put a sock over it because you know their little paws are always in their mouths re-opening wounds type of bleed.

Totally clueless I went on my merry way – we had an awesome weekend – boating, jet skiing, fishing, s’more cook-offs, witnessing a first tooth loss, friend reunions and lots of laughter. I continued nursing little Brodie’s finger wound and eventually the bleeding subsided and it scabbed over.

When we returned from the lakehouse we discovered sickening purply-blue bruising on our baby boy in abnormal places – base of the skull, on his spine and in addition to his bleeding finger and weird little pearl like nodules underneath the skin – that is when we knew something was not right.

I frantically called one of my best friends who is a nurse - I explained what was happening - calmly and sternly Maria said get to the doctor as quickly as you can.

I vividly remember rocking Brodie to sleep the night before going to the drs. Like a rumbling thunderstorm in the distance my thoughts – mama instinctive thoughts were getting louder and louder.

Something was not right.

This was not right.

I started to feel sick. I remember telling myself – Traci pull it together you are overreacting and once again the thunderous instinctive thoughts started again – a tear or two may have escaped and rolled down my cheek as I rocked Brodie staring at the bruising in the light - and I thought to myself - no. something is wrong. Please God. Help us. Something is very wrong.

I would have never imagined all of this would be a pre-cursor for a life changing diagnosis and my sweet brown eyed guy would quickly lose the innocence of infanthood and become a warrior and survivor battling the horrible disease of Biliary Atresia.

#DOnateLIFE #BiliaryAtresiaWarrior #brodiesgoodvibetribe #sliverofliver#TIGUEtough #give2live #BGVT

Grace's Journey Update

Remember Grace - she had her big new liver birthday a week before Brodie Cleveland Clinic Children's??? She is doing awesome! And lets be honest can this warrior princess be more adorable? What a great update!!!! #DOnateLIFE #give2live #sliverofliver 

 

Grace's Journey

August 31, 2016 · 

On Monday we made the trek to Cleveland Clinic for one of Grace's follow up appointments. She is doing so well! Her potassium level was elevated a bit, so they started her on a medication to lower it. Other than that, things look pretty good. Her ultrasound came back normal and her blood work looks great! We've managed to avoid hospital admissions the entire summer and we've been able to relax a bit and enjoy how much she's grown and developed! 
It's hard to believe that in about six weeks we will celebrate her one year transplant anniversary! Thank God for organ donation!! Have you registered?! 😉
💚 Valerie

Update: 08/24/2016

Well. Yesterday we flew across the country straight smack dab into LA to be part of Hollywood.

And today. Today we filmed and will be part of an incredible new show called the T.D. Jakes Show. In the Fall this nationally syndicated show will be rocking TVs across the USofA with BGVT and the Tigue's being a part of it.

What a ride - so blessed, so grateful and so very filled with happiness and gratitude.

Lights, camera - DOnate LIFE!!!!!!

Maroon for Maisie Update

Please pray for Maisie. Maisie is from the West Side of CLE, the oldest of five children and just had her 7th birthday. Her heart is bigger than the state of Texas and if you follow their story I promise you this little girl will teach you all about gratitude, kindness and how to live.

She is in a battle to survive, conquer and win her battle - Maisie received a bone marrow transplant - a man in Germany was her match!!! How incredible.

Interested in being a donor? Get a k...

See More

Maroon for Maisie

August 18, 2016 · 

Day +135 Today we are humbly asking that you pray and pray hard for Maisie. Her lab work is showing a steady decline in all of her cell lines. She is getting admitted today and tomorrow she will head under general anesthesia for a scope which will take numerous internal biopsies and she will also have a bone marrow aspiration. These results will not be available until early next week. There are once again a few theories on the table as to why this is happening (antibodies affecting all of her cell lines, GHVD, Graft failure - aplastic anemia is back) but we really won't know more until the results from tomorrow are available.

I do not cry in front of Maisie. The last time I cried in front of her was back when she was diagnosed. Today I did. When we were walking out to the elevators she asked me, "Mom, why have you been crying so much today?" I tried to explain to her that I'm just frustrated and I just felt sad today that her counts weren't up and that she has had a tough road lately. She replied, "MOM!!!!!! Don't freak out. Tomorrow they are going to give me my scope and they will figure it out and then you can buy me ice cream again and make me Chicken Kelly for dinner." Oh you sweet girl. I like that plan. You've got it!

Please continue to pray for her.

God Bless, 
Meg

Update: 08/17/2016

394 times we have had to breathe and find the courage to give our little warrior a shot of Lovenox twice daily.

His little chubby, smooth, innocent little baby thighs bruised and battered from the relentless bruising that occurs from administering.

His war cries in the beginning turned to an annoyed sigh in the end.

What was so traumatic in the beginning turned to routine in the end.

We have made it!!!!!!!!!!!!!!! We are done!!!!!!!!!!! Our little guy does not have to have this medicine anymore!!!!!

We conquered this challenge!!!!!!!!!!

It was not fun. It was not easy. But we did it. We made it.

I told myself and Brodie - every day - "One shot down gets us closer to the end buddy - we can and will do this!"

Say an Amen! Hallelujah! Praise the Lord! Awesomeness! High five! Cheers! Knock the Rock!!

Good good good to be alive right about now!

We are in full on celebration mode. We are so happy for our little guy. We are personally relieved of this stress we went through as parents and that it caused Harper.

So celebrate this win with us! Waaaahhhooooo!!!!!

XO - TT

#brodiesgoodvibetribe #sliverofliver #TIGUEtough #DOnateLIFE #BGVT#give2live

Update: 08/13/2016

Update: 08/13/16 - I have been quiet. I am not sure why… it could be I have been in the quicksand of mothering and of life. Trying to find time to come up for air between food, playing, cleaning, a little consulting, teaching a Dale Carnegie course and adulting.

It has been a long time and I am sorry. My friend Jenn pinged me and said what is happening? And I realized that it has been almost over a month – YIKES!

Three days ago I would have had nothing but amazingness to tell you – Brodie was and is doing amazing however we just had a recent “incident” let me bring you up to speed…

We had labs done the week of the 4th of July – Big John was top notch as usual. The labs came back incredible – his AST and ALT (liver functions) have always been exactly where they need to be.

His little liver is perfect.

There are some other things that have been acting wonky that we are eyeing H&H, Potassium, etc. but they are minor and could be side effects of some of the meds that he is on. Meds we are stil on – Tacro (anti-rejection), Bactrim (prevent infection), Aspirin, Iron, and Lovenox (blood thinner - shots). Otherwise our next appointment is August 22nd – ultrasound and Dr. Krishnan – GI Team (our liver doc).

Until then Drs. orders - enjoy life!

Brodie is now a full-on toddler – he is in full motion – walking everywhere, trying to climb, falling, getting into things, running into things, crying one minute, laughing the next and unfortunately he did inherit my Irish temper and when it flares it is something.

We have been on a couple road trips visiting friends’ boats and lake houses, we went up to Cedar Point (lots of magic soap and sanitizing), we have had lots of cookouts and get togethers, we have conquered the trails of Hinckley Lake for AM workouts, we have gone to birthday parties, block parties and pretty much have celebrated summer just the way it should be done.

Brodie is enamored with people and kids – the more action the better. He is totally charismatic and is so fun to watch grow. His favorite things: Balls, Cars or anything with wheels, his Daddy and Olympic women’s beach volleyball.

The other AM before the “incident” he was sitting on the living room floor and I had the TV on as I scurried to get breakfast for everyone, clean up, make sure our bags were packed for the day, pack up the car – I had the TV on.

Of course I had the Olympics on because I am obsessed with them. I watch as much as I can whenever I can – I love how the world unites in these games. I love the passion, the dedication and the emotion that it provokes every time I watch it.

Women’s beach volleyball was the event of the hour and out of the corner of my eye I see Brodie stop what he is doing and sit in front of the TV (which he is wayyyyy too busy normally to watch anything).

He sits still, staring at the TV, then slowly starts grunting and jibber jabbing and he puts his hands above his head and starts opening and closing his hands – HAHAHAHAHA he did this for like 5 minutes. Boy caught the beach girl bug – although he did like the ball going back and forth too. Hilarious.

As the morning progresses I am bustling to get everything done and us out the door, we have a busy day ahead. Brodie is acting hungry which is just dumb because the boy has already housed an Olympic athlete breakfast.

I grab him and put him in his highchair, get some yogurt and try to get him satisfied after he inhales a majority of the yogurt I am explaining to him we need to go and he is done – which provokes that crazy irate Irish temper.

He starts screaming, flailing his arms, thrusting his body back, arching his back, kicking his legs… I am in full stride with my back turned towards him walking 5 feet away to the pantry and I hear the worst noise possible.

A crash to the ground. Followed by a sickening huge thud. Immediate cries follow.

Whipping around I find Brodie face planted on the floor on his tray to his high chair. He had somehow popped off the tray – in my haste I must not have secured it entirely.

I pick him up – he has a knot the size of a small softball instantaneously on his forehead. *remember he is on Lovenox which behaves as a blood thinner? This insanely awful monstrosity on his head had been caused instant bleeding that swelled immediately. (oh and if you look close to the pictures you will see he has a bruise on his other temple from toppling over last week).

My poor baby. What had I done?

I rushed him to the ER – where we had to get a CAT Scan done to ensure there was no bleeding on the brain (again triggered by the increased bloodflow from Lovenox).

Then we had to be admitted to main campus at Cleveland Clinic Children’s for overnight observation. Floor M50 allowed us to see some of our favorite nurses – Cassandra, Preston and Suzy – they doted on us making sure Brodie was okay and I was mentally stable.

I am happy to report that he is 100% fine – just very very bruised – as is my Mama ego.

This has ignited a fire in me to get him off of Lovenox.

Have you ever been in a water balloon toss? You know how you throw the balloons back and forth and your partner launches it and as it is flying through the air towards you - you think to yourself - is it going to break? Is this the time? Will it happen? And as you catch the latex water filled balloon you watch as the water sloshes back in for inside and as the latex tightens in your hands as you try to catch it “gently” and you do – that time. You immediately feel awesome and full of relief but the stress repeats itself with the next catch.

That is my mental state – every time Brodie is on the move.

Giving him the shot is now part of our routine and something that we are fine with. What I am not fine is watching my uncoordinated, weebly-wobbly, interested in everything, falling every other minute toddler on the verge of getting severely hurt because of this blood thinner.

I cannot imagine that the risks that he is facing every minute externally are not greater than the possibility of what could possibly happen internally – 4 months post clot surgery. We are currently getting thoughts and agreement from our team.

Being a parent is so hard. Struggling through every day hoping that your best was good enough. Trusting yourself that you are doing things right.

Then you screw up.

Something happens that was not supposed to – it is haunting. You didn’t protect your little(s) and they got hurt. It sits there on your conscience cat calling you in your moments of silence. Reminding you that you were not on your A-Game.

And if my internal tormenting thoughts aren’t enough I have two beautiful giant chocolate saucer eyes that soon will both be black and blue as the blood drains down from the goose-egg and it starts to heal itself.

But the liver is good. He is happy. And life goes on. It always does. And parenting wounds heal but are not forgotten. Parenting. I use this as a verb. It’s something you do. No just who you are. It takes courage, humility, grit and a lot of love.

At the end of the day I am so very grateful that I am a Mother. I am grateful that I have two amazing little people that I can care for. I am grateful that organ donation and the power of giving life that has allowed me to have these moments. Everyday is a gift.