So I thought it was appropriate to update you guys on the situation.
A few weeks ago we found out we were having a boy and was super excited. I think I was most excited for my son to have a little brother.
A normal ultrasound after we found out the sex we got some disturbing news. Our son was diagnosed with spina bifida myelomeningocele which is the worst kind there is.
These kids often need shunts in their brain to help drain fluid. Open wound on their back where their spinal cord sticks out. No movement of their legs and below. No function of their bowels. These children need to be straight cathedured many times a day to stay regular.
Brain surgeries are frequent as the child grows the shunts need to be changed. High chances of infection with each surgery and can also cause vision issues and development issues and speech issues.
After talking with many many doctors that have done the surgeries and seen the children have no quality of life we had to make the best decision for us. We were also told that no place in IL has a good enough hospital equipped to handle these cases and we would have to move to either the east or west coast and might as well move into the hospital due to the amount of time the children are in and out. Not to mention a lot of the children who still pass due to surgery complications and other things that are beyond my scope of knowledge.
So with all that info from the doctors we chose not to go through with it because there was no quality of life for our poor guy. And no quality of life for my other children as they would be living in the hospital along side their brother. The only way my wife wanted to see it through was to treat him like every other beautiful child and give birth and we were hopeful to get a few minutes of life with him.
4/20 at 4:40 he was born but sadly he didn't even take a breath. within an hour later my wife was rushed to surgery to get the placenta out where she endured tons of pain due to her epidural not keeping her numb. She lost 2 liters of blood and almost died. The pain keeping her body stimulated for the surgery is what kept her alive.
4/24 we had a funeral where he was laid to rest with my wife grandfather. I'm catholic and she is jewish so he was laid to rest on top of her grandfather. Never being to a jewish funeral I have to say that I have a few respect for their tradition. Everything was perfect and they were very accomidating to everything. This is where pay if forward comes into play. If I see a friend on FB with a go fund me page for a reason or someone going through a hard time I will happily donate to those that need it. I've never asked for it in return. The cemetery was so nice that they paid it forward to us. Everything they did for us was free. I am thankful for that.
I will request this post be taken down after a little while it doesn't need to be out there forever but just wanted to give you guys an update. Things happen that are out of our control and things that we never expect. What I want from all of you with kids, is to just stop for a second and give them an extra long hug and kiss because you never know what tomorrow brings.
My wife is part of a FB group of support moms who have been nothing short of amazing. the care packages keep on coming. They send beautiful cards, flowers, stuffed animals with his name on it, gift cards, dinners etc. Everything she needs to keep her head up and make her feel better. These women are amazing and have raised our spirits so high it has brought her tears of joy instead of tears of sadness.
Yesterday was my birthday and it was a rough one to say the least. I am hopeful I can get someone who can design me a tattoo of his name and foot prints for my back. I also want it to say "I was your angel now you're mine"
Today is my first day back and work. Lucky for me a few people are off and I mainly work alone so it's nice but still hard to be out in public in front of everyone else with a smile on their face.
And that's about all i have to say for now. Give your family a hug and kiss and always pray for good thoughts.
ah i feel a little better writing this and letting some tears fall.
thanks for reading