Brody is out of surgery! Everything went smoothly. He had his nissen, gtube, circumcision, and an inguinal hernia repair. Poor munchkin!!! This morning his bicarb levels were still high and we weren't sure until last minute if he would even be having the surgery. Thank g-d they did it! He had a bad night and NEEDED this surgery.

Once he is extubated...which could be a challenge with his airway and respiratory issues, Now we will have to learn how to feed him through his gtube and care for it. I just hope this brings him the relief and comfort that he deserves.

Chinese food fortunes/New phone, same old number

My fortune from the Chinese food I couldn't get down tonight:

"Time is nature's way of keeping everything from happening all at once"

The story of our lives right now.

Surgery Tomorrow

Brody was transferred Sunday for surgery Monday... his bicarb levels were too high and we were postponed until tomorrow... pending an appropriate level in the morning. In the meantime his surgeon was switched (which wound up being a great thing but upsetting when we first learned this) and the NICU at St Christopher's is not in any way living up to expectations of a retputable children's hospital. Brody's first 24 hours there were very scary. There was a huge mess up on the transfer notes from both Abington and St Chris's and egos and arrogance in the way of Brody getting what he needed respiratory-wise. I watched him gray and dusky for hours begging the staff at St Chris's to give him the breathing treatments that were helping him at AMH. After begging, pleading, fighting and crying they began his nebulizers but still refused to add a treatment that we know helped him but the attending there claimed there was no evidence for or against.... if there is no evidence against its practice why the hell wouldn't she just give him what he needed???  While in this state of distress I watched the spark escape from his eyes and was terrified about what could be happening neurologically because of their stubborness.The facility is old and dirty and there is not even a comfortable place for us to sit bedside or anywhere else for that matter. I just want him getting his surgery and getting out of there and back to the comforts of AMH where they know him and are willing to do anything required to make him comfortable.

Cameron has very slowly been making small progress with his feeds however threw up all over me twice in the last few days. The nurses gave him a dum-dum lollipop this morning to encourage his sucking-it turned his lips blue... very cute.

We have been back and forth between both hospitals and getting absolutely no sleep. My sanity is far gone but we find a way to pull it together to continue fighting for the boys. We just want them comfortable, out of pain, and home where they belong very very soon. They are 4 months old now... adjusted age 2 weeks. I hope to be able to post pictures soon.

Cam- 6 lbs 10 oz
Brody-6 lbs 3 oz

Oh and I lost my cell phone

Waiting for a new one to be sent tomorrow I hope. In the meantime I have an awesome to-go-phone

Brody being transferred to St Chris's

I won't sugar-coat this email. Things are shitty. I'm losing it but that's secondary. Brody had a very bad episode yesterday that was almost fatal. We have been waiting for his airway to grow bigger and his reflux to subside as he got older but the waiting is now impeding on his development and something needs to be done. They are coming to consult tomorrow but it is probable that Brody will be getting a gastronomy tube implanted in his stomach (where he would be fed thru) and a Nissen Profundication to wrap his stomach around his esophogus in attempts of eliminating his reflux.The thought is that if we can eliminate the reflux and get all of the tubes out of his tiny airway then hopefully his airway can finally heal itself and we can avoid a tracheotomy... it is always a posibility at the end of the road but first things first.

If you are looking for more information please research online. Please be respectful of the level of stress we are all under. I have really been speaking with no one other than my mother as I am incredibly fragile right now and she's the only one I am comfortable enough to flip out on when my patience runs thin-lucky her. I am fighting so hard to keep it together for my kids. I'm taking the space that I need right now so please don't take it personally if you don't hear from me. I love you all but am just having a very difficult time with all of this and need to take care of me so that I can be better for the boys.

1/11/11

Today is the boys due date...looking at them now, I don't know how it ever would have been possible for these big guys to have stayed in my little belly until this point.

I am sleeping over at the hospital tonight to work with Cam on his feedings. The hope is for him to go to all mouth feeds and hopefully yank his feeding tube soon. He has been doing great at breast and Brody is kicking butt with the bottle. We are getting there slowly but there is finally light at the ens of that really long tunnel behind us.

Oh...Brody sucked his thumb today!

"Little acorns lead to mighty oaks"

...the fortune that I opened after my Chinese delivery dinner  :  )

                                                Brody: Sup ladies

Shoofies

Making some progress

It has been a very productive week. Cameron now weighs 5lbs 10oz!!! Brody is 5lbs 3.5 oz. Brody was switched from CPAP to high flow cannula... it is much more comfortable for him as he wears a ton less equipment and can move around more comfortably. Cam's reflux is still bugging him and impeding on our feeding and respiratory progress a bit but he has been nursing like a champ... just has to get the bottle thing down. Brody has been taking about 10cc's from a bottle! Insane to think of how far that little guy has come. They thought trach-he put that to rest. They thought G-tube (feeding tube that is put in surgically that he would go home with) and he put that to rest too. Kid is a fighter. He also has a great demeanor. He's a really happy baby. He is soooooo alert and has the biggest eyes and loves to watch everything around him. Cam on the other hand gets aggitated easily and is fussy but if I had the kind of reflux he had I'd be pretty pissed too.

Got Milk?? Cam after his GI study... a little barrium for breakfast

Their due date is Tuesday. Strange to put an experience to exactly how early they were born. Wouldn't it be great if I could just call their birth date January 11th and pretend like the last 4 months never happened. It will be a few years yet but one day their actual birthdate and adjusted age will merge and this will all just be a memory.

110 days in NICU and we still have a ways to go but I am so proud of their progress.

Their room is looking awesome. Have to post new pics of the fatties and their sophisticated dwelling that awaits them.

Catching up on some pics

Brody a while back vent and earmuffs and all

First time I got to hold both boys at once

                                              Don't think they know the other one exists yet

                                                                           tee hee

Sleeeeeping

                                                         Looking like his Popop