On to recovery! :)

Hello all!  Thank you everyone for your support and prayers.  They are the biggest consolation to Dan and I.  We wouldn't be where we are right now if it weren't for all of the many prayers.  God has truly blessed us so much and we have so much faith that everything will continue to go according to HIS plan. Gianna is carved in the palm of His hand for sure!

So here we are 4months later and our little muffin is back at the hospital for her surgery!  This will be a rather lengthy process which I will explain. 

So we got admitted on August 8th into the ICU.  The day of admittance was a whirlwind! We were admitted at 2pm and from there she had her IV's put in...one in her little foot and one in her little hand. She was a trooper only crying just a little tiny bit!  We then waited for about 25-30min for the team to get ready to intubate her.  So Dan and I took the opportunity to hold and snuggle our little muffin as much as we possibly could before they intubated her.  I didn't think I'd handle watching them intubate her very well so I stepped out and Dan stayed with her.  I guess they gave her sedation and pain meds into her IV and then when she was out they did the intubation.  Dan said it really wasn't bad at all since she was so still and asleep.  When I came back I must admit I started to get all choked up and teary eyed seeing my little baby with tubes down her throat and nose and laying there all limp.  I took a deep breath and reminded myself that God was holding on to her and that He would comfort her and myself. I immediately felt His reassurance and held myself together.  They actually then started reduction of the omphalocele immediately.  Dr. Buchmiller was able to reduce quite a bit and was very pleased with her progress.  They tied a girdle like mechanism around her to hold it all into place.  The rest of the day and evening was all about finding the right level of sedation and pain meds and right settings for her ventilator to keep her breathing properly.  It was a little scary at one point after the reduction she started to desat and her O2 dropped to like 80 from 100% and they couldn't figure out why she was desating.  You could see a little concern on the respiratory techs face and you could see G's little face turning bluish color. My heart was racing and I was starting to get a little panic stricken.  Everything got worked out though and after having done a chest xray to determine location of the ventilator tube they needed to pull the tube out a little...it was too far down.  I think they could see the concern on my face and told me not to panic unless I see them going chaotic with people rushing around everywhere.  They said they intibate people so many times a day and this is their job and if they're not worried then I shouldn't worry at all. 

We were so tired that night...I think more emotionally tired then anything.  We're staying at Yawkey Family Inn so it was very nice to go back to a homey environment.  It's such a difficult thing because as a mom you feel so guilty leaving your child.  You think people must be thinking you're just the worst mom for not staying with your baby 24/7 but the truth of it is that if you don't take care of yourself you emotionally and physically can't take care of her.  Knowing that she's sedated and completely out of it helps to leave at night.  The nurses are one on one with her so that helps too.  Also hearing the nurses tell me that its good I'm staying somewhere else and to take care of myself and that they'll sit here and stroke her head or hold her hand makes me feel so much better.  When she comes out of sedation...well that will be a whole different ball game.  Not sure if I'll be able to leave my muffins side ;).  We'll cross that bridge when we get there.

The room is very nice and has a much more comfortable bed space right on the window.  Its nice and clean and looks very new.  Our window doesn't overlook anything really but it's nice to have the natural lighting.

So today's plan is to put this mechanism the surgical and plastic surgery team have concocted.  It's kind of difficult to explain but it's this material called duo derm that will act as skin with sticky stuff on the bottom of it that will stick on to her skin around the omphalocele.  They'll put metal brackets on top of that stuff and attach some sort of lacing to it that will act as the compression and they can just keep tightening that to reduce the omphalocele.  Right now they're wrapping it and tying a girdle type thing around her back which is kind of counterproductive because every time they take it off to reduce it everything just pops back out.  They're also going to be coming in today to try and put a pick line in.  That goes into a much bigger vein and is a better option then the IV for people who need IV fluids IV nutrition IV meds and labs drawn frequently or continuously...because she's so little her hand veins and foot veins are so small and having continuous flow of "stuff" could potentially collapse the vein.  So hopefully today she'll get her pick line....she's been on a waiting list.

As for a timeline...well we don't have one to give you.  It's all up to how her body reacts etc.  It's too hard to have a timeline and just gets your hopes up.  Dr. Buchmiller thinks that by the weekend she might be wrapped flat!  We'll see!

She's not responding well to the morphine and the sedation medication...they keep having to up her doses trying to find the right combination etc.  She keeps coming too a little and starts moving her head arms and legs and occasionlly opens her eyes quickly.  I think when the doctors do their rounds this am they'll go up on her doses. 

We'll keep you all updated! Check back for more and thank you again for all of your prayers! Keep them coming!

Love you all and praying for you all,

Kaite, Dan and Gianna