Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts

Sea horse room 22

by Amber
I am sitting here in sea horse room 22(the same room we were in 16 months ago) listening to the buzzing of the machines.The drip of the IV. Finding Nemo playing  in the back ground for the third time today. Owain is in and out concious. He currently has an epidural,morphine and Tylenol to help with the pain. His surgery yesterday lasted eight long  hours and it was pretty invasive. Owain remained stable through it all! Everything went as planned. I don't have the energy to explain in great detail of what exactly was done I will save that for later.

Right now our number one goal is managing his pain.This afternoon seems to be doing better than last night. Last night was pure HELL. None of us slept longer than ten minutes at a time. The hardest part right now is not being able to hold him(he has been put on bed  to comfort him when he is having fits of rage because his left arm is in a sling,he has two chest tubes and he hates seeing the IV's in his hands. My heart aches for him. I hate seeing him go through all this AGAIN. What brings him comfort beside all the pain medication is his momma,daddy and grandma's caress of his sweet little swollen face(during surgery they pumped him full of fluids which caused him to swell). Oh and Nemo. Does anyone know where I could find a stuffed Nemo?

By the look of things we are going to be here for a while. Sea horse room 22 is our home for now. Thank you to all of you for keeping our little man in your thoughts and prayers. Reading all of the comments on facebook have been helping us get through this bump in the road.

Much love to all of you!
Labels: 8 comments

peace

by Amber
flash back
Febuary 4,2008
level 3  NICU Legacy Emmanual Hospital

Was a heart wrenching unforgettable blurry day. Owain was only ten days old and  very sick.I remember sitting in a cozy recliner (Lily's chair, a sweet baby who died in this very NICU who's parents donated the chair in honor of their sweet angel)right next to my baby's elevated bed.  My nose was red and raw from the non stop tears rolling down my cheeks.I was an emotional mess. Today was suppose to be the day Mr.Owain was going to be getting his repair surgery.It was canceled again! His third scheduled surgery He was too sick. My heart sank. I had so many emotions running through my head is this it...is the unthinkable about to happen? am I finally going to get to hold my baby for the first and last time? please god let him live he is so loved let him live.please. 

The Doctors were preparing us for the worst."if his blood gases don't improve soon he will need ECMO" (ECMO lung heart bypass machine). I was in a complete fog  with tears in my eyes I  signed the yellow release form for ECMO. Please god not ECMO.Let him live.Let him be strong enough so he can have his repair surgery and heal.please. I begged to god. I am not even religious but on this day I prayed hard for a miracle. Let my Mr.Owain be a CDH survivor.

Shortly after signing the release form a warm kind spirit Penny ( the hospital chaplain) graced us with her presents.We (family)  gathered around Owain's bed.My husband and I gentled placed our hands on our sweet boy's head.More tears streaming down my cheeks. I was trying to keep it together.It wasn't working I was a hot mess. Owain was in the middle of the circle of love.As Penny blessed him....

Great God,Giver of this gift of life
that form in love between a man and a woman
you who knit together cells
into an intricate design,
unique in the universe,Owain
You,Breath of Life,Grace itself and Mercy,too.
Turn now Your parent-heart
Upon him healing.
Upon him,flow mercy.
Upon his parents,flow strength and courage.
Upon his family flow hope.
Upon his nurses, doctors flow loving excellence.
You,turn now Your face to us and bless us.

At that moment I didn't feel courageous. I was petrified that the unthinkable was about to happened. I felt hopeless. I just wanted my baby to heal.To be healthy, I wanted to be able to hold my baby and never put him down.  I wanted him to have a chance to live. I wanted to bring my baby home.This is not what I imagined motherhood would be like.Why is this happening to us?  why our baby?why?

Our prayers were answered. Owain's weak body began to get strong enough to have his repair surgery at seventeen days old.His body began to heal.He avoided ECMO.He wowed the Doctors.They couldn't be leave the 180.They stopped preparing us for the unthinkable. Now they were preparing us to bring our baby home!Owain is a CDH survivor.He beat the odds.thank you god! thank you god!

It's crazy to think of how far our little man as come and how far we have come as parents.I am so proud to be his momma. and I am at peace with this fourth unexpected surgery. Owain is no where close to being in critically condition. He is full of life.Running jumping,playing eating and making lots of bowel movements (very important when some of your bowl is poking through your diaphragm)He is doing remarkable considering.Because of that his surgery won't happen for another couple of weeks. I hate waiting but am at peace with it. This will give the Doctors more time to study Owain's case and find a better solutions.We have more time to prepare Owain for another stay in the hospital.(We have been reading him a book about a boy in the hospital.) So not looking forward to that.I would rather go to Disney Land but I am at peace with this situation.At least this time we feel more prepared than his last hospital stay at nine months old (2&3 recurrence)
He kicked CDH booty not once,not twice three times already.I have full confidence he will do it again. after all he is a warrior ready for battle.
Labels: , , , 3 comments
Subscribe to: Comments (Atom)