SamanthaStein

Our son Jackson was born at 5:32pm on 11/12/13 at the Montreal Jewish General Hopsital. He weighed 8.7lbs. After being stabilized at this hospital he was transported to the Montreal Children's Hospital to the NICU where he was to be stabilized once more.
Unfortunately, his lungs were not strong enough to be supported by ventilation alone. Given the option to let him go or to attempt additional life support, we decided to do whatever it takes to give him a chance & at 11:00pm he underwent procedure to be supported by VV ecmo.

Before I continue, I wanted to express how much of a shock this has all been. Even with all your support, and information and the months and months we've had to prepare, there is no way to prepare your heart for something like this. At 39 weeks we were told the size of our son and his LHR, which was 2.0at the time were indicative that he would likely do very well. I wish they had never said that because we went into labor with naive optimism after a hopeful but more realistic approach the entire pregnancy...

Anyway.
12/12/13 The day after he was born went quite well. His numbers were in an acceptable range for his condition and we were told the short term goal was to keep him stable for 3 days, at which point the doctors/surgeons plan to evaluate whether or not they think it will be beneficial for him to undergo surgery while on ecmo, or if it is preferential to wait. We got a call early on 13/12/13 saying that the cannula was causing his numbers to falter and needed to either be re-positioned or replaced all together. It was explained to us that there were many risks involved in doing this and that if they did have to replace it there was a significant risk he would not survive. Thankfully they were successful re-positioning the cannula (around 1230pm) and once again his numbers were to their liking.

We have been back and forth from the hospital; trying to balance our two girls at home and maintaining a presence with our son at the hospital. My husband is having a much harder time being close to him and oppositely I have to be "forced" to leave. I don't even feel like I gave birth less then 3 days ago. Everything about this is surreal.

At about 5pm yesterday we received a call saying that they found a small pool of blood in the back right hand side of his brain. It is to be monitored closely and hopefully is gets smaller and not the opposite. In the meantime, they planned to reduce the blood thinners.
I called to check up on him around 9pm last night and apparently his numbers were very good compared to the trends the past 2 days.
And that's where we are standing this morning- stable.

It's incredible to think that while this is all related to CDH we still have many obstacles to overcome before we have to think about making it through surgery and what recovery might be like. We are once again cautiously optimistic/hopeful and will try our best to follow the nurses advice and take things an hour at a time. Be prepared for ups and downs and to be scared often.

Xox I love you baby Jax.