Sunday, August 10, 2008

Sharing a Piece of Me

Today I want to share my little boy, Little Warrior. Little Warrior is Ice Princess' twin brother. As I have mentioned before, Ice Princess and Little Warrrior started out this life in a way I do not wish on any family or child. They were extremely premature and because of that, life was certianly a challenge from the get-go.

Little Warrior came into the world weighing 2 pounds 5 ounces and measuring 12 1/2 inches in length. Despite being so premature, he still looked a lot like his older brother, Spielberg. I was amazed the first time I saw him. His eyes were still fused closed and it took an additional 9 days before they opened. He was beautiful...small but beautiful.

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Here he is at 5 days of age. It's hard to see him! The socks he is waering are newborn sized socks, they look gigantic on his little feet! He was also under a bili light because his bilirubin levels were too high. Not an uncommon thing for premature babies.

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Little Warrior and Ice Princess on August 23rd, 1998. This was the night before Ice Princess was discharged from the NICU and this was also the first time the twins had been together since their birth. I cherish this picture and the others from this same night.

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Little Warrior at 9 months of age. He had just eaten ceral. You can't tell from this scanned picture, but he had the most amazing baby blues I have ever seen! Speedracer's eyes come close, but Little Warrior's eyes were sooo amazing!


Little Warrior had a severe complication only a few days after his birth. He had 2 very severe brain bleeds called intraventricular hemorrhaging. They grade these bleeds on a scale of 1-4 with 4 being the worst. Little Warrior had a grade 2-3 on one side and a 4 on the other side. Because of the bleeding, he developed another complication. He developed hydrocephalus and required a shunt to drain the fluid off of his brain. He had other coplications also, but none that were as severe as the bleeds. The complication of hydrocephalus would prove to be the worst possible situation. Our little boy fought so hard to be with us. He endured 10 surgieries on his head and 2 other non related surgeries. He spent 148 days in the NICU and 2 months after his NICU discharge, he spent an additional 30 days in the PICU. It always seemed that when things were going well, the other shoe would drop and we would be taking 2 steps back. When I look back on those days, I can hardly believe we made it through. It was extremely painful to watch your children struggle to survive. As a parent, you feel obligated to make all of the hurt go away... you want to endure it for them so they do not have to go through it. Unfortunately, we can't do that and it is a battle they must endure. Some people might wonder why we put our baby through so much and why we didn't stop but to be honest, from the very begining Dave and I decided we would fight with him as long as he wanted to fight. We tried our best to make the best possible decisions for our child. Little Warrior was an amazing little boy. He had every right in the world to complain but he only did so when he truly needed to do so. The nurses in the NICU commented on his gentle temperment. They told us that most babies with the kind of neurological problems he had, were cranky and fussier then other babies. Not LIttle Warrior. Little Warrior was a very snuggly baby who melted the hearts of those who came in contact with him. He was soooo loved by us, our extended family and the medical staff who cared for him. When little Warrior was 10 months old, he passed away at our home from complications of hydrocephalus. Just 6 days before his death, we had taken him back to the hospital because his shunt had malfunctioned yet again. Because he had stopped wanting to eat, he had stopped smiling and he was not acting like himself, his father and I decided we would not go forward with treatment. March 22nd, 1999 we brought our baby home one last time. 6 days later on March 28th, 1999, our baby boy went home to the loving arms of his father in heaven.

The journey as a grieving parent has been full of many ups and downs and eventhough it has been 9 years since his death, I still have days when it feels likt it just happened yesterday. This last week has been particularly hard form me and I honestly cannot put my finger on why! I think about my little one often and not a day will pass when I wish things were different, but I can tell you he has taught me so much about love and life. He was an incredible little man and we were so blessed to have him as long as we did. I also look forward to the day I will be reunited with my son. I cannot wait to hold him in my arms once again! I've been thinking about posting this for days, but for some reason I have not been able to get the words to come. Eventhough I have posted this, I still feel as if I cannot explain myself well. So, for now, I will include this you tube video. It features the song, "He's My Son" by Mark Schultz. I first heard this song in 2001 or 2002 and I have loved it ever sicne then. This song really does say how so many of us feel!

3 comments:

A Crone's Life said...

What an awesome video. Thanks a lot for making me cry at work. I just hate it when my grandsons die!

Sarai said...

No doubt that you and any mom who makes it through something like this is strong.

Anonymous said...

I love the picture of the two of them together! I think about this time often myself and wish the outcome was different.
Take care,
Erica