A minor set back for the get back.

 Today was a day of disappointments, After being here for almost 3 weeks the surgeon decided not to do the surgery he feels neither surgeries will be beneficial for Hannah because of her blue spells, as of right now they are unsure as to why she de-sats to the 30's and jumps  back up within minutes sometimes seconds, one of the theories is she is holding her breathe but has not been confirmed.  If they do the VSD repair it can cause more complications, In some cases children with a VSD the blood shoots back and forth and exits through the hole releasing the pressure closing it can cause pulmonary hypertension the shooting blood now has no where to exit, the heart and lungs adapt to the shunting and the VSD in a weird way helps her.  My fiancee and i were very disappointed  i could see the tears forming in his eyes as the surgeon talked to us me i was speak less at first  slowly questions started coming to my end, we listened intensely asked our questions threw out different scenarios but in the end all the answers were the same no.... surgery.  We were told if we wanted to we could fish around for another surgeon who would not mind doing the surgery after saying that he reminded us of the pain,tubes and  possible tracheostomy that will and could occur from her doing the surgery and also the fact that a lot of surgeons don't entertain doing surgeries on babies with trisomy 18.  

It was strange as the surgeon was talking was just calm i wasn't angry i wasn't trying to rip his head off i was listening to every word that  came out of his mouth.  I remember this calmness i felt it towards the end of my pregnancy just this calm feeling i cant really explain it other then calmness, no worries and i remember wondering almost bothered as to why i was so peacefully with all the predictions and uncertainty about Hannah i was calm and at peace...peace that's the word, i felt that today, while he's telling us the one thing our daughters needs to at least bring her one step closer to being in our family for a long period of time he cant do it i was calm and at peace.....all i kept hearing in my spirit was its not over, its not over and i believe ITS NOT OVER!!!. God is in the midst of everything and obviously  surgery wasn't in the plan right now, so i'm going to patiently wait on the lord and see what he wants for Hannah.  Right now the plan is to get Hannah off the vent, off the sedation medication, and back on the by-pap then c-pap then back to her nasal cannula regulate her medication to control the fluid build up in the lungs to have her comfortable and get her home from there we will see what the doctors in Hackensack think we should do and go from there.

They are slowly weaning Hannah off all those sedation and paralyzing medication today she opened her eyes and were kicking  her little feet it felt so good to see her moving and looking around, its only been two days she was on these medications but it felt like forever, felt like i haven't seen those big bright eyes in so long  it melted my heart.  Also her culture came back negative no more infection YAY!!! my little mama is a fighter, forward progress thats all i can ask for.

   

Psalm 27:11-14

Teach me your way, O Lord, and lead me in a smooth path, because of my enemies.

Do not delivery me to the will of my adversaries; for false witness has risen against me,

and such as breathe out violence. I would have lost heart, unless i had believed that i would see the goodness of the Lord in the land of the living. Wait on the Lord, Be of good courage, And he shall strengthen your heart; wait, i say, on the lord.