Part 2...Our Story

Welcome back...I thought I would be back sooner but such is a life with a busy schedule.

To get you up to speed I left off at the initial diagnosis of Severe Hemo A, Factor 8 deficiency for our son, Jackson. We had asked our Hematologist what our son's life expectancy rate was. The look on his face was surprise...he said very calmly, "the same as if he wasn't a hemophiliac". That put us at ease but still we were so scared...of the unknown. We knew how to take care of a Type 1 diabetic but how do you take care of a hemophiliac? I envisioned padded walls and corners, no hyper dogs to knock him down and a life full of bubble wrapping my son. We explained our family history to the Doctor and how our hemo family members had all passed on. He then understood our life expectancy question.

Through the course of all this craziness the Hemo team discovered a raised bruise on Jackson's upper temple area. Most likely caused from the OB pulling him from the birth canal. He needed his first dose of factor at 3 days old. Jackson was admitted to the NICU at Cincinnati Children's for three days of factor. Our Hematologist rode with us down the elevator to the NICU floor. I don't even remember what we talked about. I do remember him apologizing for not being available the upcoming week as he was leaving on vacation and felt sorry he couldn't cancel it! (GREATEST Doctor you would ever meet!! I'll blog about him another day) We set Jackson up in his room. Had him attached to all kinds of monitors that kept beeping. All I wanted to do was take my new born baby home to be with his sisters and we were stuck in the hospital.

The next few days were full of visitors, a CT scans of his head, factor, meeting with Jackson's Hemo team...all of which is a blur. I stayed with Jackson while Joe went to be with our girls at night. He likes to Google things so he was searching one night and came across a Hemo Mom blog (he doesn't remember which one). He came to me the next day with a glimmer of hope and said he read on this Mom's blog about letting your Hemo kid be a kid. Don't bubble wrap them. There is factor to fix almost all the bleeds that may happen. But nothing to fix the potential emotional damage you may cause by not letting your kid be a kid or being super overprotective. It was from that point on I knew I had to help my son be all that he could be (with a little precaution if needed).

Jackson was finally released from the hospital factored up and doing well. The Hemo team had decided to start him on prophy dosing once a week. (Prophy dosing is giving him his medicine, called factor, once a week to help prevent any break through bleeding.) We had an action plan and took our baby home.

Looking back I'm glad I didn't know that Jackson was a hemophiliac. I would have looked up all the "bad" things that are Hemophilia related. I would have worried. It would have second guessed everything. Instead I stared Hemo in the face and said "Let's do this!" We would learn, we would adapt but MOST importantly...

we would LIVE!

So that's our story...the beginning anyway. Jackson is getting ready to turn 5 so I have to catch you up! I'll be back soon!

My boys! <3

Our Story...(part 1)

Hi! I'd like to introduce myself. I'm Jen and I'm the mother of three. I have two daughters and one son, Jackson, for whom this blog is for. I wanted to share our story to other families that are dealing with hemophilia or any chronic illness, for that matter, so that you know you are not alone. The hemophilia community is a small one compared to others but we are mighty and strong and there for each other. So I'll try to make this simple and sweet and break Our Story into multiple blogs because:

1. I won't have the time to write it all

2. Who wants to read a looooonggg blog??

Our story begins in 2007 with an unexpected and VERY surprised pregnancy of our son, Jackson. And before you say anything...yes, I know how this happens. We thought we were done. We had two beautiful daughters and were happy with our family unit. We had grown together, loved together and faced a Type 1 Diabetes diagnosis in 2005 with our then 4 year old. We were good. But I guess God had other plans for us...and it came in a brand new bundle of joy...Jackson!

Hemophilia runs in my family. My maternal grandfather had it as did his brothers. He died in his 30's from complications during a surgery. My mom was 3 or 4 when he died. I had two cousins who were born with hemophilia. I remember as a kid knowing that hemophiliacs were bleeders but didn't know what that really meant.

My mom never got tested to see if she was a carrier. I never did either. I knew enough to alert my OB/GYN that hemophilia ran in my family. I had some crazy cycles during my time of the month and lots of break through bleeding on the weeks that weren't my scheduled cycle but nothing that could have possibly alerted my OB/GYN that I could be a carrier. It wasn't until we found out that we found out we were having a son that it really bothered my mom. Enough that when I was 8 months pregnant she said something that made me go into action. Maybe it was her tone, not so much her words that made me call the OB/GYN and ask to be tested as a carrier. I didn't know I should have specified Hemophilia A, Factor 8. They did a generic carrier test and rushed it to the Mayo Clinic. I received the results the day after I had Jackson...not enough info. But we knew. Fortunately my Doctor's decided to treat me as I was a carrier and that our son was a hemophiliac. No forceps's, no long pushing and no circumcision.

I was fine with the plan. Everything went well with the delivery on March 7, 2008! He was beautiful!! Born healthy, weighing 8 lbs. and full of piss and vinegar! The heel prick came and he bled. and bled. and bled. and we knew...Our town had a crazy out of season snow fall the day Jackson was born. It was a Friday and it snowed 12 inches!!! In March. On the Southwestern tip of Ohio. We don't get that kinda snow! We were snowed in. They released us on Monday with an immediate trip to Cincinnati Children's Hospital to the Hematology floor. It was late in the day; around 4pm. They did a blood drawl and I just kept praying that it wouldn't be hemophilia. The Dr came back and said he had it. Severe A, Factor 8. My husband looked at the Dr and asked what our son's life expectancy would be. We had no idea. We knew that my family members who did have it all had passed on. Hemophilia = Death to us.

Little did we know!! :)

part 2 to come later....