Showing posts with label curious george and owain. Show all posts
Showing posts with label curious george and owain. Show all posts

impatiently waiting....

A couple of  weeks ago I felt at peace with Owain needing to have yet another repair surgery.I felt at peace(still do) and thankful that his current situation is not life threatening. This way the Doctors have  more time to come up with a better solution to prevent this from ever happening again.Crossing my fingers.Praying.Hoping.

Today this week right now I am feeling impatient. I want to get this show on the road.The longer we wait for our little man to have his fourth and finally surgery (crossing my fingers.praying. hoping) the more anxious and impatient I am. We still don't have a game plan. We still don't have a surgery date. We are still waiting.....

Yesterday I called Dr.Z's office (Owain's surgeon) hoping to hear the game plan. He is still waiting to hear back from the Senior  surgeon. Two weeks ago after the CT scan and it was determined that Owain has had another recurrence he sent all of his medical info to him.We are still waiting and so is Dr.Z. We are all waiting for the Senior surgeon to get back to all of us .Senior surgeon is not his name.I haven't had the pleasure of meeting him yet.I am sure he is one of the best of the best since he works with Dr.Z and all. but I am getting impatient. Tired of the waiting game.I hate the waiting game.I don't want to play anymore! Ready to get this show on the road!

I am still at peace with Owain's current situation. He is still eating well (for Owain) making lots of BM and is a wildly  active little boy. Showing no signs of discomfort. Having no problems breathing. We are so thankful.
Impatiently waiting that's what we have been doing....
waiting to hear the game plan....
waiting to know when his surgery will be....
waiting and waiting and waiting....
but even with all this waiting and uncertainty we are still at peace and confident that the team of Doctors will be able to come up with a better solution.Crossing my fingers,Hoping ,praying we will have a game plan next week.Then we can finally get this show on the road!

While we wait we have been....
going to the Library for music and story time...
decorating sugar cookies   eating frosting....
On dry days playing at the park....
and having play dates...
Life is good.

make a wish

peace

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.

Meet George....

George is Owain's new side kick.


Where ever Owain goes so does George.




Owain even shares his milk with George.

They are BFF (best friend forever)


Thanks Grandma P for Owain's BFF ;-)