Feeling grateful

My head hits the pillow for the 5^th time. I hold my breath, listening for Will’s cry, and am rewarded with silence. It’s 430 a.m. but I don’t mind. The fact that he is sleeping in the next room is enough.

I love waking to his cry.. his cute little whimper that sounds more like a bleating lamb. I love giving him baths and kissing his dripping piggy toes. There’s nothing like a naked baby! I love watching him and his big brother as they snuggle on the couch. I love how all of his cries are followed by an adorable frown. I love that he’s starting to move his arms and legs. I love being able to be with him every day and not wonder who is taking care of him. I love that he loves his binky. I love how his tiny body looks in his big bouncer. I love watching his reaction as I sing lullabies. I love that he loves to be held by his momma. I love his little peach fuzz on top of his little head.

Each day, every hour, is a choice.

Today I choose to enjoy every single minute I’m given with this miracle baby.

I can’t get enough.

The future

How do I not think about the future?

While Will was in the NICU, I was completely focused on getting him home. That was our main goal. Now that he's home, I'm plagued with thoughts of the future.

Will he walk? Will he always have his G tube? Will he sit? Can he see? What can he see? Will he swallow tomorrow? Will he stop breathing tonight? Can he hear?  Will he talk? Does he hurt?

I am grateful he is alive. And that, by itself, is a miracle. I want to remain grateful and be content to just have him here.

It is a constant decision to turn it over to the Savior and let it go. But right now, I am failing.

Jesus wept

Jesus wept.

This is, in my opinion, one of the most touching and poignant scriptures.

And why did Jesus weep? Was it because Lazarus had died?

Martha came to meet Jesus on the road. She said, "Lord, if thou hadst been here, my brother had not died. But I know, that even now, whatsoever thou wilt ask of God, God will give it thee."

Martha and Mary wept because their brother had died, and Jesus wasn't there to heal him. I think Jesus cried with them because he was compassionate and was sad that they didn't see the whole picture. They didn't know that Jesus was about to raise their brother from the dead.

Sometimes we don't know what's in store for us. We weep, and Jesus weeps with us because he loves us and knows what we are feeling. But I think he also weeps because we don't see the whole picture. We don't realize the magnificent blessings He has in store for us. 

I love the second part of Martha's plea, "Whatsoever thou wilt ask of God, God will give it thee."

After the finality of death, she still knows in her heart that the impossible can be done. But it's not impossible. Her brother was healed ONLY through her Savior, Jesus Christ. 

He is my rock and my redeemer. It comforts me to know that He weeps with me. 

I love Him so completely.

Last days in the NICU

May 3rd

The crowd goes crazy as the team makes another try. I scream and yell and cheer my little brother on as his rugby team fights for the national championship. In between the excited yells, I hear a muffled electronic noise. The NICU is calling. I've been in Utah for a few days now, enjoying a last minute trip before Will comes home.

I answer with a tentative, "Hello?"

"Will is struggling. He's having a lot of desats and is breathing pretty hard. We are going to put him back on oxygen and see if that helps."

I sit for a few moments and try not to feel disappointed. Will has been off oxygen for a week.
 In a way, I am relieved. This means he will go home on a pulse oximeter that will alarm when his oxygen or heart rate drops. I will be able to rest easy and not always wonder if he's breathing.

May 6th

3 days.

Will is expected to come home in 3 days.

The nurse trains me on all his equipment.. his gj tube (which was successfully placed today!!), feeding pump, and oxygen. I feel so many different emotions as we prepare to bring Will home. Excited, nervous, anxious, sad, and happy all at the same time. I am sad to leave our NICU family. The doctors and nurses here have become such a huge part of our lives. I am excited to FINALLY have our miracle man home with us and be able to enjoy him 24/7. I'm nervous and anxious to know that I'm in charge of all of his care and well being. I feel like I might explode with the overflowing emotions in my body!

May 9

After 124 days at the NICU, the day we've been waiting for has finally come! 124 days of the most intense, joyful, and heart wrenching roller coaster I could've imagined. And here we are at the end. Or is this the beginning?

I gather our things in Will's room, making sure I don't forget anything. There's a lump in my throat as I take down the pictures Will's nurse hung on the walls. What am I going to do without Will's guardian angels?

As if she read my mind, Will's nurse quietly enters with a somber look. I know it's time to go and I feel so blessed. I just didn't realize it would be this hard. I walk over to her and give her a big hug. I can hardly hold back my tears as she wishes us luck and tells us she'll be thinking of us every day.

Another nurse brings the rest of Will's equipment and we load everything on a cart. The "bath" nurse walks me out and pretty soon there are several people following, saying their goodbyes. It feels so strange to be pushing him in a stroller down the hall. Strange but oh so good.

I load Will and all of our stuff in the car and slowly pull out of the round about. As I drive home from the hospital for the last time, the storm of emotion gets stronger with every turn. I say a silent prayer and beg Heavenly Father to help me.

Will cries the whole way home. I feel helpless as I drive and listen to his screams. I finally make it home and Tyler helps me bring in our bundle. We look at each other and can't believe this day has finally come. I sit in the living room and snuggle Will all afternoon.

We did it.

On to the next ride!