I am still confident of this:
I will see the goodness of the Lord in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord
Psalm 27: 13-14

Saturday, May 1, 2010

These next 11 days...walk along with me, will you?

May 1, 2009 - Evan got his own basinet!! NO MORE ISOLETTE, and NO MORE WIRES!! May 1, 2009 - my little boy was freed from all his wires!
So, over the next 11 days (today included) I want to reflect back on the final 11 days Evan was in NICU before we heard the most amazing words in our 66 NICU stay..."Evan is cleared to go home".
Today, one year ago, Evan was moved to an open basinet! Yesterday one year ago it was the top off his isolette, but moving to the basinet meant REALLY moving forward to the goal line!
And not only was he moved to the open basinet...ALL his wires and monitors CAME OFF!!!! Let me tell you...after 56 days of watching his monitor, his oxygen levels, heart rates, signs of apneas and bradys...it was all gone! And I was TERRIFIED!!! Which is why from day one the nurses encourage you not to watch the monitors, but to watch your baby for the day the wires come off. So you know by watching what is going on. And I had really pushed myself to do that the past weeks prior to this day. And I'm glad that I did. But let me tell you...every night that I went home from this day forward...I was TERRIFIED that a nurse would be too busy to know that something was happening to my son. Terrified that I would get a call telling me the heart breaking news. Again...understand this comes from the terror of a mother who watched and held her son as he passed away...so my fears were understandable.
Of course, that call never came. But the fears never went away. I would have stayed there day and night if I could have.
But when those wires came off...it meant something big to me. Beyond the medical stuff. It meant that I was free to walk up and down that bay aisle without restriction of a foot of give-way from the wires. I could pick my son up and walk maybe 7 or 8 feet distance back and forth. I got to feel what so many lucky women experience often the day of their childs birth. Freedom. Freedom to hold their child and walk about the room. It took 56 days for me to experience what most experience the same day.
I was on cloud 9. I was in a daydream of joy.
However, the very day this joy occured...another set back arose. Typical, was the first word that entered my mind. During Evan's routine stat checks the nurse noticed Evan had developed hernias on both sides of his groin. Lovely.
Don't get me wrong, I was glad that it was discovered while he was still in the care of NICU...but it meant that surgery would become the next step. However, over the next weeks I'll cover all that as it comes up. For today, one year ago...it was a typical preemie issue that unfortunately occured. And with the way Evan moved and stretched and wriggled about since his birth...it wasn't surprising. The strength that boy had even at 2lb 9ou was incredible.
And every time he moved and stretched and kicked about in his isolette...I could feel it inside of me. Because that was exactly how he was inside!
All the milestones Evan was hitting were amazing, and we were so filled with joy and gratitude. We often wondered when the rug would be pulled out from under us. And at times...it did. But our little guy would bounce back stronger than before. We were unbelievably fortunate that his set backs were minor, compared to many in NICU. But to us, after losing Zac...minor was not a word in our vocabulary. Minor meant major in all ways for me. Minor meant a fear searing through my mind and body.
And even through all the joy of Evan's miraculous milestones and his amazing little life...pain always lingered. Tears were always there. Aching always wrapped itself up with the joy.
As full of love and joy as I felt for Evan...I also longed and ached for Zac.
Each step closer to leaving NICU meant one step closer to leaving the only place we ever knew Zac on the outside world. The only place we ever got to be with him and touch him and kiss him and hold him that one and only time.
But joy kept us going. And the joy of Evan's progress kept us hopeful.
Today my little man crawls at the speed of the wind! Today my little man giggles and laughs and imitates grandpa as he blows his nose, and copies daddy when daddy coughs. He is walking with things, he is growing like a weed. He smiles every morning I go to get him and lets me know when he is done with his naps. He is curious about life and everything around him.
This morning I just stared at him and thought..."wow, the distance you have come! The strength you possess! The life you give me! I still can't believe you are here, and you are mine".
OK...tears pouring here.
I just can't believe how far Evan has come. He had no choice in when he arrived. He had no knowing of what was going on and what was to come. He spent his last trimester in a world that he was not meant to be in yet. He just blows my mind. Things could have been so very different, and yet we are so lucky that they weren't.
I will be forever grateful. In joy and in sorrow...I will always be grateful for my sons.


  1. Just as honoured to walk these next 11 days with you....and the future, as much as I was both privileged and devastated all at the same time to follow Zac and Evan's journey from the very beginning.

    It's truly beautiful and heartwarming to see Evan's amazing progress, as much as it is terribly bittersweet not to see Zac grow by Evan's side on this earth. Loving all your boys, both here and in heaven, a little more each day♥♥♥

  2. I always cry when I read the rememberings of Evans first days...SO grateful for the blessing of him...and heartbroken for the other parts of your heart that are in Heaven. xoxo