Oh what a year.

Oh what a year it has been and oh how much can happen in one year. Little did we know that come one year later there would be 3 little Z's. I think I got so eager to post my blog last night that I forgot to include this piece, this probably requires its own blog post anyways. January 13, marked one year since Zayne's discharge from the NBICU. We were ready for him to finally come home after 164 days, he was ready...And I don't think he has quit moving since.

It's crazy to me all this time that I have spent with Ziah and everything I have witnessed and to think that Zayne was still in the NBICU a month longer than how old she is right now. Some times it's even hard for me to grasp that. Emotionally it's hard.

He is a little spit fire that is for sure. Challenging us daily and proving too us over and over that nothing will stop him. He is the definition of motivation, determination, and inspiration. He has taught Andy and I so much about what life is truly about and what means the most in life. He is full of smiles and laughter everyday. All though don't be fooled he has one heck of a roar. Each day he builds more and more character and becomes more and more funny. He inspires me everyday. Our days definitely come with there own challenges. Zayne has a temper that is forsure. But we can't help but feel that this is due to frustration and annoyance. We are constantly untangling 50 feet of oxygen tubing. People always say "at least you have 50 feet of tubing," my response "yeah, it's like having the taz mania devil attach to 50 feet of rope." He is on the move. He also has not changed when it comes to "it's on Zayne's time." We may of been making a small amount of progress in his feedings, I emphasize small, <1%. Now, Zayne has decided he doesn't need to eat period, in fact he actually finds it funny to fake it. So this is frustrating. But, this is just another small hurdle. We will get through it.

Things have really been put in to perspective for me this past week, or maybe a gentle reminder from the man above. One of the first Mom's I met in NBICU was Lindsey, her son is Ira. We have similar stories as far as our pregnancy, the difference she delivered at 24 weeks me 33weeks. Her son is a fighter, one of the biggest fighters I know. When Andy and I didn't know what to expect, where to turn, or what to think or do, Lindsey gave us hope, Ira gave us hope, they paved a way for us to follow. I believe Ira was around the 2nd baby in the NBICU to go on the Bronchotron, next was Zayne. I can remember when I met Lindsey she said "they pulled out machines they've never used to use on Ira." Never did I think that this would be us too but it was. I can't help but  feel that Ira paved the way and who knows what our course would of been had Ira not laid down the foundation. What I do know is the bronchtron made a big difference if not the difference in Zaynes outcome. And then the role was reversed and when Ira went to primaries and some of the decisions that were made with Ira was because of what  was being done at home with Zayne. So, these two have fought a battle together, they have a connection, and the two have made a difference in each others outcomes, Our biggest fear has been and is Zayne getting sick. Although we like to think "he is stronger than that," his "lungs are stronger," kids with BPD and Chronic lungs don't "do as well as Zayne," which is true. But, Zayne is not invincible, he does not where a shield, and although we like to think he is superman or batman he is not. Andy and I sat down tonight and told ourselves, "we have to keep doing what we are doing." I can't feel bad for not taking Zayne out and going bumming like Zoe and I do. I can't beat myself up for not being able to have those outtings and alone time with Zayne. Our friend Ira recently fell sick, although it seemed he was doing "okay," he took a turn for the worse. He contracted a virus that is similar to RSV but meaner. He is now fighting for his life, he is on ECMO. His chronic lungs and BPD make this a tough battle. So, if you are reading this please pray for this little warrior. He really is the toughest little one I know and he has made such a impact one my life. And if you can make a donation please do.
https://www.gofundme.com/iraalexanderjones

Let your faith be bigger than your fear
#irastrong