overdue updates

I'm so tired. Utterly exhausted in every way.

I sit and hold my angel baby, stroking his freshly washed hair. My mind reviews the past few weeks.

March 14th 
I glance at my phone to see who's calling and my heart flips. 9 weeks in the NICU and I still panic when I see their number.

"Dr K wants to meet with you and your husband sometime today."

This can't be good. We agree on a time and I feel panic rising like bile in the back of my throat.

What could it be? Why can't they tell me on the phone? The thought crosses my mind that all I want to do is sleep. I wish someone could give me a big fat sleeping pill that knocks me out for two months. When I wake up, Will will be out of the NICU, healthy and strong.

I shake my head and try to focus on getting through the day.

As we walk into the NICU for the hundredth time, I feel a small piece comfort and thank Heavenly Father for His unending love. It never ceases to amaze me.

We sit by Will's isolette and wait for the doctor to enter. When he does, my palms start sweating and I feel myself tense.

He begins, "Will stopped breathing several times and had to be "bagged". We need to talk about what you both would like to have happen."

Have happen? What does he mean? For some reason I can't process what he's talking about.

"Would you like for us to continue to save him?"

I feel the breath leave my lungs. Terrifying thoughts and feelings course through my body as I try to settle my pounding heart. To my relief, Tyler starts speaking.

"We want you to do everything possible."

I look at him with grateful eyes and feel a surge of love for him. I feel blessed to have him by my side.

Dr K then says, "Ok. It looks like we're going to have to place a trach to help him breathe. He has too many secretions and he doesn't seem to know how to swallow."

I glance at my tiny baby and imagine a hole in his neck. The thought frightens me.

Tyler gives my hand a reassuring squeeze and tells the doctor we'll do everything it takes to help our little boy.

Hours later, as I lay in bed, I try to find the comfort I so desperately need. I open my scriptures and start reading. After a few versus, my eyes blur as I read the words in John.

John 16:33 In the world ye shall have tribulation: but be of good cheer; I have overcome the world. Through all my tribualtions, He will be by my side. He has overcome the world!! I am overcome by a profound feeling of love from my Savior. I find that my tears have turned to tears of joy.

The tears continue and I pray that He will sustain me.

March 16th

Church is over and I sit visiting with some ladies after class. Sister T comes over and wraps both arms around me.

"What would you like me to pray for this week," she says.

"Pray for Will to breathe better."

I hug her again and tears fill my eyes. Her kindness touches my heart.

It's late afternoon. I walk into Will's NICU room and notice the sunshine coming softly through the window. It warms my heart. While peering through the glass on his isolette, the nurse enters with a cheerful 'Hello'. Her mood seems to match the weather and I can't help but feel affected.

"Time for Will's bath!" she exclaims. She is known as the "bath nurse". Will always smells so fresh and clean when she's on.

We fill the basin and tenderly place my little man in the warm suds. He scrunches his face in a surprised grimace, then gradually relaxes as I start massaging his skin. I clean behind his ears, down his back, and in between his piggy toes. My favorite part is his miniature frog bum. Sooooo stinkin adorable!

After he's all clean, I lovingly apply baby lotion to his already soft skin. I relish the feel of it. His favorite part of this process is always his head massage. He relaxes contentedly in my hands and I try to send my love through my fingertips.

I wrap him up all snuggly warm and cradle him in my arms, breathing a deep sigh.

The "bath" nurse comes over and says, "I have an idea. Let's try taking out his vent tube from his throat and just see how he does."

I had already been thinking along these lines. He has a feeding tube AND a vent tube down his throat, acid reflux, and lots of secretions, and we're wondering why he can't breathe?

After removing the green vent tube, I start to feel a little apprehensive. After all, this tube has helped with the "milk in the back of the throat" problem. But after 30 minutes, I can easily see that it was a good decision. His oxygen requirement goes from 80% all the way down to 25%!!!!

I sit and snuggle him all evening.

March 18th

I relax in the recliner and caress Will's round cheeks. They are getting fuller every day. I can't wait till he has chubby rolls all over his body, perfect for blowing raspberries and munching on.

I hold his binky and thoroughly enjoy watching him work at it. His eyes are open and his gaze rests on my face.

Oh my heart. I'm in heaven.

After a few minutes, a thought enters my mind.  Try nursing him.

I embrace this thought and the intense desire to nurse him is overwhelming. I glance at his stats. His oxygen requirement has been so much lower since Sunday and his heart rate is good.

I unbutton my shirt and look out into the hallway, half expecting a nurse to come in to make me stop. For some reason I feel like I'm breaking the rules!

 So far, so good.

I take out his binky, wait for a moment, then replace it in his mouth. He happily sucks for a few seconds and I repeat the process. After doing this a few times, I try to get him to latch. To my surprise, he opens his mouth and then starts sucking! I try to keep my elation under control and watch carefully to make sure he can still breathe. Oxygen looks good!!

My milk starts to come down and I suddenly don't know what I should do. I don't want to drown him but I really want to see if he can do it. I make a split second decision and decide to see what he does.

As my milk begins to flow, he starts to swallow, breathe, suck, then swallow again.

He's doing it. He's really doing it!! The neurologist never thought he could do this and he's doing it! And it's his first try!

Tears stream down my cheeks as I watch my son nourish his body. Will's nurse comes in to check on him and sees that he is nursing. She rushes over to make sure that what she is seeing is real. We cry together and she can't believe he's actually nursing! I feel like skipping through the halls, singing at the top of my lungs that my little man is NURSING!!

Will's nurse calls in another nurse and that nurse calls in a few more. We all sit and watch Will do what nobody thought he would every do.

My heart swells and I mentally add this to his list of miracles. I utter a silent prayer of gratitude as he finishes nursing. Smacking his tiny lips, he lets out a shuddered sigh and falls sound asleep.

March 22nd

My head hits the pillow and I squeeze Tyler's hand appreciatively. His thoughtfulness touches me. He threw me a surprise party (that ended up not being a surprise because Lucie gave it away!) It has been a wonderful evening with friends and family.

As I lay there dozing, my new ringtone makes me jump.

It's the NICU.

"Hello?" I hesitate.

"Krista, I just wanted to let you know what's going on with Will," she says. "He hasn't had a good night at all. He's been trembling and crying with pain since seven o'clock. We thought it was seizures at first but you don't cry through seizures. Now we think it's painful muscles spasms that have to do with his neurological problems."

I don't know what to say, so she continues.

"I'm going to give him morphine to see if that helps. We'll keep you updated."

I feel sick to my stomach as I end the call. Here I was all evening eating pizza and opening presents while my sweet little man suffered.

I turn to Tyler and my hands start to tremble. I feel as though I'm going to lose it. Tyler whispers a heartfelt prayer and I gradually calm down.

This roller coaster seems never ending.

March 25th

My strong little fighter! I reach my hands through the opening of his isolette and put my hands on his growing body. I let out a contended sigh. The past few days have been good ones and I am so grateful.

I pull the tabs on his diaper, peek inside, and catch sight of a not-so-small "number two".

"Good job buddy!!" I exclaim.

It's funny how we congratulate our babies on having big poops. I wonder when that changes. :)

I clean him up and put on a new outfit. Oh my goodness could he be any cuter?! My heart is overjoyed at the sight of him. His face is clear of the CPAP and I love gazing at his entire face. The doctors have switched him to the cannula full time and he is doing wonderfully. Another accomplishment that nobody thought he could do.

I tuck him in for the night and my hand lingers on his soft cheeks.

"Sleep tight Will. You be a good boy tonight. And no funny business!" This little saying has become our nightly routine.

I check his stats one more time, turn down the lights, and quietly leave his room.

One more day.