Wednesday, October 7, 2015

World CP day ~ Danny's tale

I figured I would share Danny's story on World CP day.  Many of you know Danny, but not HIS story.
Not wanting our daughter Avrianna to be an only child and thinking it would be as difficult as it was for us to get pregnant as it was with her,  we started the "process" when Av was about 5 months old.  Well the first month.....We were pregnant!!  So I have always said this pregnancy was a planned ooops as I wasn't planning on having them that close together in age, but with how things turned out I wouldn't have wanted it any different.  She adores her brother and loves him so very much!!
I had many issues with this pregnancy.  My Due date was 1-10-04 but I had already gone into preterm labor the first time mid September having to be hospitalized for steroid injections in hopes to get his lil lungs more mature and to try and stop labor.  This happened 2 other times with the last time being Thanksgiving evening.  I went into the hospital knowing we were past the 32 week mark (Av was born premature at 32 weeks) thinking I was ahead of the game with this one.  Once at the hospital the Dr on call (my Dr was on vacation) really pushed me to try to stop labor again as seeing this was a boy he was better in the womb the longer we could keep him.  With much reservation and tears they were able to stop labor once again.  But we had agreed this was going to be the last time we were to stop labor and give me steroids.  The game was all in Danny's court now.  Of course knowing we wouldn't stop labor if it began again.......labor never started back up.  I was so sick, miserable, and HUGE (gaining approx 100lbs) that around 35 weeks my Dr started doing weekly ultrasounds and amniocentesis' to make sure he was doing well and once we got the ok that Danny's lungs were mature to be out in the world we scheduled me to be Induced.  Yes Danny was sassy even in the womb!!
I was scheduled to be induced December 23 (37 week gestation) 2 days before Christmas with the plan being we would be able to bring our present home Christmas morning.  The day before I had my last ultrasound and amino with everything looking great we was to be approx 7lbs and he was a healthy baby boy with fully matured lungs (I would hope so with 3 doses of steroids).  Labor was quite different from that of my first, but I was chalking that up to Av being premature and smaller.  Boy I wished I was right.  It was a very intense labor contractions were hard core and began coming about every minute so I couldn't recover.  I chose not to have any pain relief as I has labor before with nothing and I did fine, man was I in for a whole new experience.
I pushed for about 2 hours before Danny was born.  Danny was delivered 12-23-03 at 5:56pm weighing in at 9lbs 1.9oz (um were did the extra 2lbs come from over nite) and he was 21.25" long.  I longed for the moment my baby would placed on my chest after delivery as with Av being so premature she was sent away to the NICU immediately after delivery.......but that moment never came.
I remember hearing NO CRYING from Danny and the doctor shouting NOT BREATHING and NO PULSE.  Danny was born sleeping :(  After putting together the pieces together years later (it's amazing how much information gets "lost" when shit hits the fan) it was figured he was without blood or oxygen for approximately 12 minutes before being resuscitated right at my bedside.  You see Danny got stuck in the birth canal with the Umbilical cord that happened to come first (umbilical cord prolapse), so when he got stuck he pinched off the cord resulting in catastrophic events.  The cord came out flat and grey and Danny in all senses born dead (no color, not breathing and no pulse with the worst apgar score ever) due to no blood or oxygen (Hypoxic Ischemic Encephalopathy).  My perfectly healthy baby was broken.  He was given the diagnosis of Spastic Quadriplegia Cerebral Palsy meaning he had high tone that affects all four of his limbs.
Once the NICU team came in and stabilized him they took him down to the NICU to further assess his injuries and care.  But not before they allowed me to touch his sweet lil hand.  I needed to touch him and let him know I was so SORRY and that I LOVED HIM VERY MUCH as I was unsure if I'd ever see or touch him alive again.
The doctor had to dislocate my pelvis and he really pulled hard on Danny's arm to get him out, which resulted in "brachial plexus" and dislocation of his arm.  Danny sustained significant brain trauma, a grade 4 brain bleed and his lil brain was so swollen you could hardly tell were the left and right side came together as it looked like one big piece instead of 2. Unfortunately about 5 hours after his delivery my sweet baby boy started to have his first seizures.  Thankfully the brain stem wasn't significantly affected and he was able to breath on his own and his heart was working just fine
After all the tests scans and monitoring.....Christmas morning I was told he was likely he'd never walk, talk, feed himself, he'd be a vegetable, and it would be a miracle if he made it to his first birthday.  How do you like those apples on Christmas morning.  I picked up my sweet angel, rocked him in the chair for hours just sobbing for my sweet boy.   .

Danny spent 3 weeks in the NICU before we took him home.  They can't fix the brain and we knew it was damaged greatly so once they found meds that would help with the seizures and we were able to feed him through a feeding tube down his nose, we were on our way home to love up on him as much as we could and find specialists that would help us learn and care for Danny.
What a story?  I could play out all the what ifs, and tell you all the things he can't do......But I won't.  My miracle will be turning 12 this year, AMAZING!! I will tell you the he has had a hard life, he has endured more then most do in a life time with illness, surgeries (40+), and medical issues ~ BUT he still smiles, and its a smile that will light up any room.  Danny is Av's BIGGEST fan.  He LOVES to travel in his RV, float in the pool, and be out and about.  He enjoys the moment and is present in his own world. Danny has taught MANY, more then they'll ever be able to teach him.  Do I wish the circumstances were different for him....hands down without a doubt, but he's my miracle and I love him just the way he is.
I give him the best life I know possible, I will fight for him with everything I have as Danny is my HERO, my world!!

1 comment:

Anonymous said...

Beautiful story of Danny, I never really knew all that happened. He is so blessed to have a mom, dad and big sister Av!!! I continue to keep Danny in my daily prayers and you Lori, Dan and Av. The Love Courage, Strength and Life that can be seen and felt from all of you is overwhelming. God Bless you all and I hope to some day meet Danny and your family. Hugs and Love from da Upnort Romittis