Big Forward Steps

Last week we were feeling pretty beaten down. Stress was at an all time high as we watched our boys struggle through health issues while we were trying to keep our heads about us. I know our role is to love them, advocate for them where we can but so much is really out of our hands. And that is a good thing but also a scary thing. My mantra last week was really to remind myself often just to take a deep breath and let go a bit. We can white knuckle this journey all we want but ultimately we know we are not leading this ride. We have to trust no matter how rocky this road gets, our sons will come out of this however it is meant to be. For two people who like to plan, have control and over think things to death, this is a tough lesson but one I know we are meant to learn.

Alex came through his shunt surgery, again like a star. Prior to his surgery we were getting a little concerned that he was being a little too mellow and we were told people with fluid on their brain can be more lethargic, etc. He has shown us a little more personality since the surgery, being more alert at times and active and we absolutely love that. It truly is like Christmas every day in some ways, as we constantly see new things in them, and get more familiar with how they react in different situations.

Speaking of Christmas: this weekend was monumental in progress for both boys. I still can't believe everything that transpired. Saturday they took Nicholas off of the ventilator for a trial period to see how he would do on something called C-Pap. Its a step down from the ventilator and is much gentler on his lungs. He was finishing up his first course of steroids and the doctor wanted to be aggressive to see if this would be enough to get him off of the vent, or if he would need another course of steroids. The only way to know is to try. And I'm here reporting from the clouds that almost 36 hours later, he is still doing GREAT!!! He is taking all of his own breaths and the machine is just pushing oxygen through his nose to keep his lungs expanded. We have been warned that there is still a chance he is not quite ready to keep this effort up for good and he may require more steroids to keep this momentum but we are just so thrilled about this step. He by the way hated it at first and it looks even more cumbersome on his sweet little face but we know this is much better for him.

If that wasn't amazing enough, we walked in today as they were getting ready to take Alex off of the vent. We think he is actually more ready than his brother, didn't require the steroids but needed to wait to get a little bit further out from his surgery before trying. And shockingly just a few short hours after being on C-pap, he required so little on those settings, that they already graduated him another step down to something called "FP" (no idea yet what that stands for, I admit I wasn't paying attention to the conversation--I was simply intent on seeing my baby's full face for the first time ever and this time crying tears of sheer happiness). Pictures are included below, we got glimpses of both of their faces in between transitioning from the vent to the c-pap and the docs were incredible enough to let us take pictures so we could stare at them longer without all the "stuff."

We are feeling so blessed at their progress and hopefully this ride continues along this path for a good long while. Thank you to all of our friends and family who have been travelling this road with us and even those we do not know personally who continue to keep our boys in your thoughts and prayers. We are incredibly thankful!!!


Nicholas


Look Ma--no tubes (for a minute)


Nicholas-with c-pap



Alex off of vent



Alex only on "FP"

Day before

we thought we were happy then...