Pics

Resourceful way to keep paci in

                                                 Brody sitting up during PT

I keep telling him that Elmo is NOT his twin brother

His come hither look

Butt!

Leggings... on the cutting edge of fashion

                                                       Photo session with mommy

Look at me! I'm standing!

                                                    Everything goes right in the mouth

Hey, Ho, Let's Go!

                                                      Handsome boys

Snuggles

                                                       No pants!

Changing Expectations

The road to recovery for Brody has been a very slow slow one. It has been two weeks since we were told that he might not make it through the night and Brody is starting to feel better, look better and get back to the activities we had started with him before coming into the hospital. Our lows were similar to when we were in Michigan watching the clock waiting every second of the day to find out if Cameron would be sighted or not. But yet another lesson learned-expectations change daily. Healthy or not, our kids will suprise us and rewrite the story of how we thoought our lives would go. I can plan, plan, plan but Brody is the boss of me and is redefining how we live our lives daily. No expectations, just love and support to make them the best little boys they can be.

Brody lost a ton of weight after his infection. They were not giving him enough calories and then we stumbled across a random medication that I didnt recognize on his list of 15 per day... he was getting something for GI motility that never should have been prescribed. They put my preemie baby who is grossly underweight as it is on a diet and gave him a laxative! We dealt with that disaster and now Brody is 9lbs 12 oz. He will be in the hospital for another 3-4 weeks before they discharge him home. We don't know what level of respiratory support he will be coming home on. We're hoping he will not be ventillator dependant 24 hours a day and maybe just at night or when he's resting... we want to play!

Cam continues to be fantastic. We have been taking him on outtings more often. Yesterday we went to Rice's! Perfect mix..outdoors for the baby and shopping for mom : ) We had a great time. His visual therapy is going great and he continues to impress us with his level of progress. The retina specialist said everything still looks good with the eye anatomically. We go to the opthalmologist in July and we're counting down the minutes until we find out if he will need contacts yet. I would estimate he's probably 14 lbs but we'll see tomorrow when we go to the pediatrician.

I am officially not working... this was not part of the plan... but there is just no way that I can be all that I want to the boys and be on the road and in the OR all day. It was very hard making this decision as I have worked for the last 10 years to get to where I'm at professionally, but the kids need me. In 20 years I would not look back at this time and think "I regret not working" but I would regret not giving Brody and Cameron all of the medical, emotional and therapeutic attention they deserve. Its a short amount of my time for a lifetime of their happiness. There are many things I will miss about my job... the free company car didn't hurt either   ; )

Cam being awesome

Big boys eat in highchairs

                                                Do I have something on my face?

                                                  How sexy is this?

                                                          Hi Dad!!!

                                                  Showing some leg

                                             That Elmo is soo funny!

                                           

Such a happy boy

                                            Wittle hands

Chubby toesies

                                                          Strong like bull.

                                                WINNING!!!!

                                                Fall go boom

Half-Baked

If you haven't been able to truly grasp what the mother of a child born prematurely has been through Alexa Stevenson's book Half-Baked pretty much describes what I was feeling every step of the way eventhough her experience was very different. She went through in-vitro and challenges getting pregnant which was different from us, but her accounts of being on the "mom-unit" and her bluntly honest emotions through this experience make me live it all over again. She is eloquent and vulgar all wrapped up into one. She wrote the book before I could. I had to stop reading for a while because it was too hard for me, but in order to move on I need to face the demons I ignored back then... so I have started reading again with all of the time I spend by Brody's bed while he's sleeping. It's cathartic to read through it, deal with the emotions and pull myself back together.

Ok... maybe a little bit about Cameron too

I have the absolute cutest pictures of Cameron on my camera but can't upload them due to technical difficulties. In the meantime... look at this fatty watching Baby Einstein!

                                                       Carrots... everywhere!

My first time in a high chair!

It's all about Brody

Pics a few days before Brody's infection got bad. Starting to get chunky... resembling Cameron...looking the best he ever has.

                                           Sucking my hands so hard my eyes crossed!

                                              Hieeeeee

                                         What's going on over there???

                                I'm a hunk a hunk a burnin love

                                         Blue steel

                                        Tickle-me Elmo freaks me out Mommy!!!

                                         Whoa... what are these things??

                                          Toys? Worms?

                                          Oh... they're my hands!!!

                                 Brody + Bolt= Love

                                          My nurse made me a barka-lounger chair to watch Kung Fu Panda in

                                  Love all of the nearby patients families talking in the hallway about that baby up all night watching movies... apple doesn't fall too far from the paternal tree

                                      Content and sleeping. Love seeing him relaxed

                                                                 Handsome pants

                                                 I got holes where there not supposed to be and I still look this good!

                                              I'm the roughest, toughest, cutest ever baby on this earth

I haven't blogged in a while because we have had our hands full. Two days ago we were called in to speak with his doctor's as Brody had some drastic changes. His lungs were almost completely collapsed and layered with patchiness from his virus with fluid on top from pneumonia. He has a serious lung/trach infection that would be difficult for anyone to fight let alone a baby in his condition. At that point we were told that the next 12 hours were critical and would give us an idea as to which direction this course of his care would go. He was sedated indefinately and put on very high ventillator settings so that he could rest and let the vent do the work for him. We were told that if things took a turn for the worst that they had nitric oxide and an oscillator nearby to give him even more support. Fortunately he got through the first night without needing it and so far has been able to maintain his sats on the vent alone. We don't know how things will go from here but we are just taking it day by day. After 8 months of living this nightmare and analyzing it every which way, blogging my feelings and crying them out in hysteria, numbing them with anti-anxieties, finding a happy balance with how well Cam is doing... then feeling guilty for how well he is doing while Brody gets worse, laughing about inappropriate things because there is just no other response at this point, having actual nightmares and sleepless nights, felt like my heart was literaly ripped out of my chest...I am finally speechless. We have done everything on this earth and fought so hard for our kids and now we just have to leave it to Brody to fight this infection and get the hell out of the hospital eventually. I feel tortured when I have to leave him but also that I'm depriving Cameron of the fun baby stuff when I'm sitting by Brody's bedside as he sleeps through his sedation. I don't really know where my place is and my balance is way off. I live for these boys alone and Brett and I would give our own health, any amount of money, home, limbs anything for them to be alright.

Prayers, positive energy, love, support... whoever, whatever you believe in... send it Brody and Cameron's way please.

All of our love for all of your support through this time... keep it coming!