Welcome. I was inspired to write this blog while pregnant with my son, Josiah. At 18 weeks gestation, Josiah was diagnosed with Down Syndrome. He had open heart surgery at 3 months and has had RSV twice. He is now 21 months old. He and his two older brothers amaze us everyday. Josiah was not a mistake, nor is he a regret. He is a miracle and the light of our lives. We share with you this beautiful life we have been blessed with.
One year ago, today, was a very important day. January 25, 2012. Josiah's rebirth...the day his broken heart was fixed.
Last year, we had learned of the many holes that were wreaking havoc in Josiah's heart. We learned about his pulmonary hypertension (caused by the holes). Josiah had undergone several tests and open heart surgery was necessary. We had received the call on Friday, Jan 20th...pre-op Tuesday, open heart surgery on Wednesday. Tuesday's pre-op happened without incident. Wednesday, January 25th, was a long day.
It started at 1:30am - we woke Josiah for his pre-surgery bath. As I undressed him, I knew that his chest would never look the same again. I remember feeling "he will be scarred for life." It's not a good feeling for a Mom to have. I took this picture of my little man. He weighed 8lbs 7oz. He was a mere 3.5 months old.
It was the most anal bath, I had ever dealt with. We had been sent home with a bath sponge, soap, and directions. It was important that we followed instructions as it would decrease the chance of infection. We followed directions to a tee.
At 2:00am, I was nursing him - we had a 3:00am cut-off time. I wanted to be sure he had one last feeding before we left for the hospital. Josiah ate and napped.
At 5:00am, we left for Children's, arriving at 6:15. We were checked in by 6:45 and taken to pre-op. At 7:50, Nurse Tom would do something very special. He allowed us our hugs/kisses, wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, then CARRIED our little angel to the operating room.
At noon, we were meeting with the surgeon. Josiah had successfully undergone open-heart surgery. He was a little miracle.
Josiah was in CICU immediately following the surgery. There were tubes, machines, and the like. Here are the pics I took of him there:
It's difficult to convey 'what I felt' then. By reading my own blog, the memories come right back. I remember things that had since been forgotten...the details...the little moments. The play-back of time.
Here is the much anticipated scar that I so feared. I remember hoping that as he grew, others wouldn't make fun of him for this scar.
Suffice it to say, Josiah did amazingly well. Here is a picture of him taken two days after surgery. It was January 27th. Most of the tubes had been removed. He was out of the CICU. Recovery was amazing!!!
On January 29th, I wrote the following in my blog:
"Josiah woke at 1am for a weight check and feeding. He's weighing in at 3.14k (down from 3.15 the night before). Then he slept until 7am. We woke to confirmation of today's planned discharge. Carl is coming at 3pm to take us home.
Josiah had several feedings this morning, as well as a bath. His final labs came back perfect. He is healthy. He is strong.
I've returned a borrowed movie. I will return this borrowed computer soon. Our bags are packed. We are ready to go home. Josiah is enjoying his last nap here.
I reflect on the last week and I am amazed at where we stand now. I am amazed at Josiah's strength. I am in awe of our little heart hero. I am star-struck over his determination and bravery. What has transpired is nothing more than a miracle (and a whole lot of skill). They have given us back our son. I am thankful for everything the doctors have done. I am thankful for broken hearts made whole. I am thankful for a wonderful family, support network, and friends.
All the while, I can't ignore what we were not faced with. My heart breaks for the children who don't go home. I shed tears for the car seats that leave empty. I am saddened by the empty cribs unable to embrace the children they were assembled for. For so many, it is not the happy ending we are living. For those, my prayers are with you.
I will never forget how precious life is. I shall never take for granted the miracles we have been blessed with.
Climbing Up the Down Staircase is an incredible journey! For that, we are so fortunate."
This is a picture I took last night January 24th, 2013. It is the one year later pic :). It's hard to tell he even had surgery. It is amazing!
And, this is Josiah - one year later. Happy Anniversary, my little heart hero :)
Current age: 15months
Current weight: 20lbs 12oz
Current height: 30.5 inches
Cute factor: 10
...forever grateful for the miracles in my life...