Jack's Heart: A Little Guy's Big Journey: Times Like These

"I am a new day rising

I'm a brand new sky

To hang the stars upon tonight

I am a little divided

Do I stay or run away

and leave it all behind?

It's times like these you learn to live again

It's times like these you give and give again

It's times like these you learn to love again

It's times like these time and time again"

Most of you know, one of Evie's favorite bands is the Foo Fighters. We listen to them day in and day out. I've always liked the FF, but when you are forced to listen to a hand full of songs over and over again, you pay more attention to the words.. and what one song may have meant to you at one point could mean something completely different now or carry a much more significant meaning.

Before Jack was born, we didn't know what to expect. We didn't know what was going to happen to him right off the bat.. and we were prepared for the worst. With my final push before his birth, I threw a hail Mary prayer up to whoever was willing to listen to please take care of my baby. We were told he could come out blue in color... Jack was perfectly pink. They prepared us to believe we wouldn't hear him cry once he was delivered... I never knew a baby's cry could sound so amazing. I can tell you with 100% certainty, there is nothing wrong with this kid's lungs. I was told I probably wouldn't be able to hold him because he would probably need to be whisked away to the NICU... allbeit was brief, I got to hold my son for a minute before his transfer to Children's.

Right out of the gate, Jack amazed us with his strength. He has surpassed any and all expectations of his doctors so far.. he is the text book definition of a miracle. I feel like his CDH is somehow teaching me to live in the moment with him-- to enjoy every single possible moment I can with him, because I didn't know if I was going to have these moments. And I don't know how many moments I will have with him in the future. Impending heart surgeries are the anchors that keep us grounded.. the serious gravity that keeps us from getting too far ahead of ourselves.

And yet whether he was born completely healthy or with his CDH, tomorrow isn't a promise to any of us. This lesson he is teaching me, this lesson of being in the moment and embracing our time together, stretches beyond just Jack. It connects me with Evie, and Jeremy, and my mom and my siblings.. my friends, my family. Nursing for hours on end, in the wee hours of the morning is rough, but his eyes meet mine and he pulls me back down to BE there. To enjoy our connection. At bedtime, Evie can have that extra book.. that one extra song. I'll hug my mom a couple seconds longer. I'll call my Grammy to check in and say hi. I will be there.

This lesson-- it's a precious gift my son has given me. The tides change.. we are up, we are down. Jack's health will be a long road. We'll have our good stretches-- we'll have our rough ones. We will have happy home comings, we will have extended stays at BCH. It's time's like these.. time and time again. And no matter what, I will be there.

Before I end with some pictures, a couple things...
1) Jack has been weened off his Lasix. YAY!
2) At his last appointment, Jack weighed 8.5! His 2nd chin is looking deliciously adorable.
3) We go back to Children's the last week of March, where he will have an EKG, and if necessary, an ecco.

And now, pictures.