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.