December 26th

I wonder if it's possible for a heart to actually break. Tears flow freely as I hold my little soldier against my chest. As I feel Will's struggled breath, the thought of him suffering one more day is almost unbearable. 

I brush my lips against his feverish forehead and begin the second verse to my favorite lullaby. The desire to take his pain away is overwhelming. How can a mother sit and watch her child suffer and struggle? The tears don't stop as I begin a second lullaby. 

Oh my heart.

How long will this last? When will he take his final breath? People say not to worry about the future and just enjoy each day with him. But how can I enjoy each day as he fights for each breath? All I want is for the suffering to stop. I only care for his comfort. I whisper an urgent prayer and plead with Heavenly Father to take his pain away, and to comfort his soul.

I feel breathless as I finish my prayer. I can't get enough air. Thoughts of Molly's last moments flood my mind and I start to panic. I try to focus all my energy on Will and his comfort. I want what's best for him, and if that means that I have to let him go be with the Savior, then I will do it. 

I will do it because of the intense and pure love I have for him. 

I just don't know how I will do it. I pray with everything inside me that I will have the courage and strength.

2 years

Can it really be 2 years since my Molly was born?

I glance at Will and watch as he struggles to breathe. It's a little bit ironic to be here in the hospital as Will fights the nasty effects of pneumonia as I'm thinking of my Molly's lost battle with this brutal sickness.

A part of me, of course, wonders, "Is this the end for him?" After all, we've seen this before and it didn't turn out. I try to ward off anymore negative thinking and blanket my mind with warm thoughts.

It doesn't seem to be working at the moment.

Will's alarm goes off and I glance at the sat monitor. He's on high flow oxygen and his little body fights for each raspy breath. His alarm stops beeping as he fights just a little bit harder.

I glance at the other equipment surrounding his metal crib. IV pole with fluids, feeding pump, the infamous "blue bag", and suction tubes snake out of the wall, with their never ending noise.

I take everything in and am startled to realize how familiar and "normal" it all seems. Sad, but true.

My mind wanders back to Molly and I feel a small pang in the middle of my chest. It's amazing how intense the ache can be, even after 2 years, and even though I'm holding another baby. I think that's one of the misconceptions of losing a baby. I love all my children completely, intensely, individually. Just like every mother does.

Today is Molly's birthday. Today my baby girl would've been 2 years old. And today, I ask my Molly to watch over Will, to be his guardian angel.

I can think of no greater thing for Will than to have his big sister by his side as he fights the same illness that took her home.

Happy birthday, sweet one.

July 6th continued..

July 6th

The kind lady behind the desk calls my name. For some reason it sounds strange coming from her mouth. I follow her to another waiting room. This one is small and private. This one is where the Doctor sits with you and reviews the surgery.

"There was more damage to Will's stomach than we originally thought," she says. She then goes through the surgery with me. I nod every few seconds, like everything she is saying makes perfect sense. But it's hard to focus on the words pouring from her mouth. She finally tells me I can go see Will.

Will. My little hero. I am in awe of his strength. His strong spirit inspires me every day.

I quietly enter his room just as the respiratory therapist is listening to his lungs. She takes her time, moving her stethoscope to the proper positions on his chest. She glances at me and gives a quick smile. I stride over to Will's side and place my hand on his. I look at his face and notice there are tears streaming down his cheeks into his ears. His face is scrunched up and I can tell he is in pain.

"Do you know if he's been given something for the pain," I ask the nurse.

"We just gave him a dose of fentanyl."

I feel my temperature rise as I recall conversations earlier in the day. I specifically told several people, including nurses, Doctors, and the anesthesiologist, that fentanyl doesn't affect Will.

"Fentanyl doesn't work for Will," I say, trying to keep my voice even. "He needs something else."

"Fentanyl is actually more powerful than morphine, honey," says the nurse.

Honey? Why is it that because I'm just the mother, I apparently don't know what I'm talking about?

I take a deep breath and explain his history. "I'm not sure if it's because he got it so much in the NICU, but it does not affect him."

"Well," she says, with an air of superiority, "Let's just give him a chance, then maybe we'll switch to the fentanyl drip if he seems like he needs it."

I look at her in disbelief as she moves out of the room. Seriously?!

I turn my attention back on Will and my heart does a little flip. He gags on his breathing tube, furrows his little brow, gags again, and more tears start to appear. The helpless feeling that comes over me is overpowering. I put my face close to his so he can smell me and know I am there. I softly stroke his arm, careful to go around his IV. I whisper a prayer and plead for his relief.

An hour later, my prayer is answered. The doctor strolls in, completing her rounds. I pounce on her as she comes through the door and tell her that Will needs something other than Fentanyl. She takes one look at his scrunched up face and agrees.

Will drifts to sleep and rests for the next two days. We take him home a few days after that and it's like we've been given a new baby. He's not turning blue anymore! One more hurdle down, and feeling very grateful.

July 6th 2014

The alarm goes off, piercing the peacefulness in the air. I run over to where Will is laying on the floor and quickly roll him to his side. Formula comes flowing freely from his mouth, a river of white froth. I grab the suctioning equipment and swiftly swipe his mouth.

This shouldn't be happening.

And yet it is. Over and over.

After his Nissen Fundoplication surgery, he wasn't supposed to reflux. Something is wrong.

I call the nurse and explain what's happening. As I go through the events of the day, I can hardly believe the words tumbling out of my mouth.

"He's thrown up several times and can't breathe. He's turned blue a few times and we've have to bag him to get him breathing again. Every time we sit him up, he stops breathing."

The nurse hesitates for a moment, trying to process my words. "I need to advise you to call an ambulance."

I tell her that we're not calling an ambulance, that we'll just bring him in. I think she is surprised that I'm so calm and matter-of-fact about everything. I think I'm just used to this kind of thing, sad as it is.

We arrive at the hospital and get checked in to our luxurious ER room. And we wait. And wait. And wait some more.

Finally a doctor comes in. Should I be concerned that the name on his badge says Dr Hurt? Yikes.

He looks Will over and thinks he looks fine. I explain what has been happening. When I get to the part where 'Will can't breathe when we sit him up.. he does better lying down,' the Doctor says, "Well with reflux they actually do better sitting up."

Really? I didn't know that. After 6 months of dealing with the most severe reflux possible, I've never heard of this. (This goes through my mind in a very sarcastic voice)

The words that come out instead are, "Yeah, I know it doesn't make much sense. That's why we think something is wrong."

He agrees we need to run some tests.

The nurse comes in after what seems like an eternity and tells us we're going to be admitted into our room now. It's 5 a.m.

After we settle into our extra luxurious hospital room, I feel like I'm going to pass out. The exhaustion from the last few days hits me and my eyes droop as if someone is pulling them down.

I look at Will in his enormous bed. His chest rises and falls with each fighting breath. I glance at the clock, then back at Will again. I need sleep. I make a split second decision and conclude that I need to go home, sleep, and get a few things for our hospital stay.

As I drive home from the hospital, my mind is a blank and it's all I can do to keep my eyes open. My head hits the pillow. I can't remember falling asleep. I only remember waking to the sound of my ringtone. It's a cheerful tune, one that reminds me of bbqs on lazy summer days. It seems to contradict my current mood.

I clear my throat and answer, trying to sound as if I haven't been sleeping. It's the Doctor.

"We need to do surgery asap. His Nissen wrap slipped. Half of his stomach is above the wrap and half is below. It could be cutting off blood supply to his stomach."

My mind reels as we finish our call. I feel anxiety about another surgery, especially so soon. But I also feel relief. I was so afraid we would take Will in and they would tell us that everything looks great. Then what would we do?

I quickly gather a few things, stop and get a sandwich, and arrive at the hospital in record time. I enter his room just as the nurses are coming to get him for surgery. My heart does a little flip as I watch them put my baby in the transport and wheel him down the hallway.

I can't help but think, "Is this it?" I hate that this thought enters my mind. But I can't help it.

I get to the surgery waiting room and my palms are already damp. The doctor didn't know how long surgery would take. 'It depends on how much damage has been done,' she said.

I glance around the room at the other people waiting for results. My eyes move from one somber face to another and I imagine their precious ones somewhere beyond those metal double doors. I suddenly feel a deep connection to these strangers as we wait together in this cold room. I say a quick prayer of comfort for them and their families.

I wait and wait. I picture my sweet boy in the operating room and wonder, 'What will this day bring?'

Rest

Sometimes I feel defeated.

The past few days have been flooded with a heaviness I can't seem to shake.

The heaviness in my heart is from a combination of thoughts. Thoughts of the future, wondering if my milk production will start to increase, wondering if the doctors are right about Will, or if we should hold on to the hope that he'll progress. But the thought at the forefront is the deep regret that one of the people I'm closest with doesn't want contact with me anymore. The reasons are still unclear, but it is clear that my heart is breaking.

A scripture has been rolling around in my mind. It's in Matthew Ch 11.

29 Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.

30 For my yoke is easy, and my burden is light.

How do I give my burdens to the Savior? How do I let it all go? How can I raise my flag and surrender? For some reason, I keep holding on to these worries. I still have faith that someday these worries will be swept away in His love.

But right now I desperately need rest for my soul.

Tolerating feeds

Surrendering to the Savior is a daily choice.

I sit here watching Will struggle as he gags and retches, then attempts to catch his breath. An alarm goes off and the nurse runs in, gives him a few puffs of oxygen, then exits the room. My heart breaks and I feel so very helpless.

His fundoplication and G tube surgery was 3 days ago. And now he isn't tolerating his feeds. His tummy isn't used to getting food. He's always been fed past his stomach, in the jejunum. The doctors don't really seem to know how to proceed. And neither do I.

During the shift change, I listen in as the nurse reviews his history. My heart starts to race as she goes down the list.

Microcephaly
Bilateral Congenital Hip Displasia (both hips are out of socket and need surgery)
Neurological impairment
Cerebral Palsy
GERD
Cast on left food to correct malformation
Recent Fundoplication surgery
G tube
1/4 liter oxygen
problems swallowing

I start to tear up and wonder how much more one little baby can take.

But then I look at him and he looks at me. I'm so blessed to be his momma. As hard as this is, I am grateful to be able to walk this sacred path with him, where angels are continually surrounding him.

I want him to come home. But first he needs to tolerate food in his tummy.

I know that if we all pray for this, it will happen.

I know it.

Checklists

I realize I'm going to be late and scramble to find my shoes. After loading Will and his equipment in the car, I do a mental checklist.

Oxygen tank and tubing, check.

Feeding pump and extra bag, check.

Wipes, diapers, bum cream, suctioning, extra milk... check.

Monitor, check.

Gauze, Q-tips, meds and syringes, check.

Extra outfits, extra blanket (blow-out is inevitable), check.

Sanitizer, binky wipes, binky, check.

Ok, I think I'm ready. Oh wait, I forgot his G tube extension.

I dash back into the house, seal the tube in a baggie, and head to Mary Bridge Health Center.

Today I have appointment with Will's GI and pulmonary doctors. I'm anxious to see what they both have to say.

Will has been having troubles with a lot of bile in his tummy, resulting in a lot of green goo flowing from his mouth and nose, resulting in troubles with breathing, resulting in lots of coaxing to get his fragile lungs to cooperate. Not to mention the pain that all of this causes him. Bile in the throat is NOT comfortable.

It is so difficult for me to watch him struggle. But I know these experiences will make me stronger and more compassionate. I have to keep reminding myself of this each day.

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!

Blessings

"Will had a wonderful night. His breathing is much better and we've been able to control his pain."

I breathe a sigh of relief and hang up with Dr Y. As soon as I put my phone down, it rings again.

"Mrs. Shawcroft, I forgot to mention I spoke with Dr. P. We ordered an ultrasound of Will's liver. It looks like there are some abnormal findings. He saw some dark spots on his liver and the gallbladder wall looks thick. I'll have Dr P give you a call and explain all the findings."

My relief turns to worry in an instant. This ride is like a roller coaster in more ways than one. Every time I get more bad news, I lose my stomach.

I try to focus on the fact that Will is breathing better. 

"Count your many blessings name them one by one and it will surprise you what the Lord has done."

Post surgery

April 22nd

I stand at the foot of Will's crib and watch as the nurse and RT take turns giving him breaths. My heart is in my throat as I watch his limp body turn blue.

"Breathe. Come on buddy, breathe," I continue to say. They just switched him from the ventilator (required for his surgery) to the nasal cannula, and he's not liking it.

2 minutes go by and I feel a complete sense of helplessness.

Another minute passes and the thought crosses my mind, "I don't want to be here alone when he dies. I want Tyler with me."

As I stand on trembling legs and watch them continue to work on him, I suddenly feel an unexpected sense of peace. If he passes away here and now, everything will be OK.

"Get the doc in here," I hear someone say.

The doctor rushes in and administers a drug through Will's IV. This drug, he tells me, will reverse the effects of the morphine he received for his surgery. This will hopefully get him to breathe.

The liquid enters his veins and Will immediately lets out a cry. I keep my eyes fixed on his belly as his lungs start working. My heart starts to slow to a normal rate and I wipe my damp palms on my jeans.

He received surgery this morning at 8:30 to get his GJ feeding tube placed. This is done laparoscopically and endoscopically. After 2 1/2 hours, they declared the surgery complete, although they weren't able to get the tube down past his stomach as far as they wanted. If it doesn't travel down on it's own, they'll have to go in again in 2 weeks and try again.

12 hours later, here we are.

"Turn his settings up on the cannula," the nurse says.

I watch as they make a few final adjustments and listen to his cry. It's music to my ears.

After a few minutes, the nurse nestles him in my arms and I speak soothing words in an effort to calm him.

"It's OK Will, you're doing a good job," I whisper.

His little chin quivers and he keeps on wailing, but I don't mind.

He's breathing.

April 23rd

My eyes fly open to the sound of my phone ringing. It's the NICU.

"Will had a really rough night. We had to bag him several times and he's in a lot of pain. He just doesn't want to do it anymore. We need to intubate him again."

I quickly get ready and drive to the hospital. As I enter his room, the tube is already in place and he is sleeping comfortably. I feel a pang of guilt. As I was sleeping peacefully during the night, my little man needed his mommy. Tears fill my eyes and my throat is tight. He needed me and I wasn't there.

I dab my eyes and take a deep breath.

April 24th

I peer down at my miracle boy and place my fingers on his soft belly. I need to be close to him. He looks so much better than yesterday. His swelling has gone down quite a bit and his coloring is better. He's on morphine and versed to help with the pain. He's been breathing over the ventilator and all his gases have been good. Time to take out the breathing tube again and see what he can do.

As I stand by his bed, I start to think about the events 2 days ago when I thought he was going to die. I'm so afraid he isn't going to breathe again.

The RT takes off his face tape and gently pulls the tube, then places the cannulas in his nose. His chest stays still and I feel my pulse start to pick up. I turn him on his side and vigorously rub his back as it begins to turn blue.

Still nothing.

The nurse grabs the bag and hastily places it over his mouth and nose. After about 30 seconds, he gets the idea and starts doing it himself.

I let the air out of my lungs as I watch Will fighting to get it in his own. I suddenly feel exhausted and all I want to do is sleep. I stay several more hours just to be sure he's OK then finally decide to go home. I feel anxious and worried about him and almost decide to stay. But my heavy eyelids win and I slowly walk out of his room, praying he'll make it another night.

Because of Him

Will's warm body rises and falls with each breath. I gaze down at his handsome little face and start singing "our song".

"I have never loved someone the way I love you.

I have never seen a smile like yours.

And when you grow to be a king or clown or pauper

I will say you are my favorite one in town.

I have never held a hand so soft and sacred.

When I hear you laugh I know heaven's key.

And when I grow to be a poppy in the graveyard

I will send all my love upon the breeze.

And if the breeze won't blow your way

I will be the sun.

And if the sun won't shine your way

I will be the rain.

And if the rain won't wash away all your aches and pains,

I will find some other way 

to tell you you're OK."

As I finish singing, his eyes open and rest on mine. I try to convey all the love I have for him with my eyes. We hold each other's gaze for a few moments, then he blinks a few times, stretches, and drifts peacefully back to sleep.

It's getting late and I know I should head home. We have an early start tomorrow. His surgery is scheduled for 8, and we have to be here at 7. But I can't seem to leave. 

My eyes start to feel heavy and I decide to sing just one more song.

"I have a family here on Earth, they are so good to me.

I want to share my life with them through all Eternity!

Families can be together forever through Heavenly Father's plan.

I always want to be with my own family 

and the Lord has shown me how I can.

The Lord has shown me how I can."

My eyes blur and tears drop onto his soft cheeks. There is such a peaceful feeling in the room and I don't want to break the spell. The love I feel for him is coupled with the love I feel for my Savior. I think about His life and His resurrection, and the amazing gift He has given each of us. It is only through Him I can be with my sweet ones again.

It's all because of Him. (click for video)

I gently place Will back in his crib and brush a kiss on his forehead. 

"See you in the morning," I whisper, feeling comfort in knowing it's in His hands.

AH!

AAAAHHHH!!!

The tube will be here Monday.. surgery is scheduled for Tuesday morning at eight!

GJ tube

The group of chairs form a circle and we wait for the others to arrive. My palms are already sweating. I just want to get this over.

Dr E enters with a smile and moves around the circle introducing himself.

"Hi, I'm Dr E! I'll be performing Will's surgery."

My stomach constricts at the word and I take a deep breath. I look down at Will in my arms and he lets out a shuddered sigh and stretches. He melts my heart!

Everyone finds a seat and we begin the meeting. I glance around the room at each individual.. Speech Pathologist, Neonatologist, Gastroenterologist, Will's case worker, and his nurse. My heart swells as my eyes rest on his nurse. She has been part of our lives for so long. Not only has she followed Will throughout his care the last 3 months, she was Molly's nurse as well. She has held me up, comforted and encouraged me through this difficult journey and I will be forever grateful. She has become more like a sister to me.

The meeting progresses and we all decide on the right feeding tube for Will. He will be getting a special kind of GJ tube that will put his feeds through his stomach into the jejunum. The tube has to be special ordered and will take 10 days to get here.

More waiting.

Speech walks over to me after the meeting and... apologizes. She shows us the swallow study video and admits that Will is swallowing, but not efficiently. She apologizes for being short with me and not giving me the full details of the swallow test.  I tell her it's OK, it's in the past.

I take a deep breath of relief and we walk out of the NICU. I feel better than I have in weeks. Will will be getting a GJ tube placed, I'll be able to work on breastfeeding (sometime in the future), and we'll be able to bring him home soon.

We have a plan!

His swallow

My heart hurts.

After several wonderful nursing sessions with my little man, we decided to stop. His reflux was so bad he would stop breathing. That was about a week and a half ago. Now he's forgotten how to swallow and failed his swallow study today.

Countless attempts were made to try to convince certain individuals that he CAN swallow. Now they have their test that proves otherwise.

My tears flow freely tonight.

Meeting Will!!

After three long months, the kids FINALLY got to see Will!!! Lucie was VERY sweet and tender with her baby brother. Brigham was BOUNCING off the walls!!! Haha. Very special day for our family.

Grateful

"Mommy," Brigham says, "I love you."

I glance in the rearview mirror and smile.

"I love you too buddy." I keep smiling and think, I am so blessed.

We are almost to the grocery store when the next song on my CD begins. I let the spirit of the song work its way into my heart and start to think about my Savior. My relationship with him has grown tremendously in the last year. I feel closer to him than I ever have. He is my rock and the only one who truly understands me. He can comfort me because he knows exactly what I feel.

All of a sudden, a thought enters my mind and I feel breathless. 

I am grateful for my trials.

I am startled at this and think to myself, how could I be grateful?

All at once, this thought builds and my heart and soul spill over with the spirit. A feeling I can't quite explain penetrates every part of my body. 

Through my experiences, I have been able to surrender to Jesus Christ in a way that I might not have done. Through these trials, I have gained a love and closeness with my family that I cherish everyday. Through every heart wrenching realization with our baby boy, I've had to turn myself over to Him completely. 

It has been the most painful and emotional 3 months of my life.

And I wouldn't trade it.

Ups and downs

April 1st 3 a.m. 

I hold my little guy, gently rubbing his back. My heart starts to beat faster when I realize he's not breathing. I quickly unwrap his tiny body and look inside his mouth for secretions. The past day has not been good. A few hours ago, the nurses called a code blue. It took a few minutes of suctioning and coaxing to get him to start breathing again.

These images flash through my mind as I quickly place Will back in his crib. The nurse rushes in just as I start suctioning his mouth. It's amazing how quickly his arms and legs turn blue. She grabs the suction hose from me and tries clearing his nose. He lets out a whimper, takes a deep breath, and my heart slowly returns to normal.

"I think the reason his secretions have increased is because of his new feeding tube," the nurse says.

I nod in agreement. It only makes sense. Ever since switching to this new tube, he has gone downhill. His stomach just can't handle digesting milk yet, not to mention his reflux.

I make a mental note to speak with the doctor tomorrow.

April 2nd

"We have decided to change Will back to his NG tube," Dr. G says. "Our main goal right now is to protect his airway and keep him breathing."

I agree and we end the call.

Later, I walk into Will's room and rub my tired eyes. I hear him squeak and I smile over at his crib. He is doing so much better already. His secretions have come down and he hasn't stopped breathing since. I immediately put my hands on his body and whisper soft loving words, breathing in his baby smell.

I love this boy. 

I say a quick prayer and thank Heavenly Father for helping him through the night. He has yet again sent his angels to watch over him and I am so grateful.

2 surprises

I walk into his room and my heart skips a beat. There are two nurses hovering over Will's tiny body, busily engaged. But then I see their smiles.

"We have a surprise for you. Notice anything different about boo-boo?" This particular nurse always has fun nicknames for Will.

I do a quick assessment. The first thing I notice is he isn't in his isolette. My baby, my little man, is lying in a crib! He looks soooo good in a real life crib! This is a big step for Will. It means he is able to maintain his own body temperature, which is on the going home checklist.

The next thing I notice is his feeding tube.

"Oh my goodness!" I exclaim. "His feeding tube is coming out his nose!"

The nurse smiles and explains, "We are going to see if he can handle feedings in his stomach. This is the next step to getting him home."

Will has had a feeding tube that enters his mouth, goes past his stomach and into his intestines. He has been taking feeds (my breast milk) this way to help his reflux. Before this tube placement, he would spit up a lot, not be able to handle it then aspirate.  With the food going past his stomach, there's less chance of it coming back up. An NG tube, the one they are placing, goes through his nose to the stomach. This will be a HUGE test for Will.

I rest my hand on his belly as the nurses finish taping the tube to his plump cheek. This is so wonderful! He will be able to nurse so much better without a tube coming out his mouth. And yet, I'm nervous. I want him to succeed so badly. If he can handle food in his stomach, then we can take him off continuous feeds, gradually working him toward scheduled feedings. Once we get to scheduled feeds, he'll be able to nurse more!

Go Will, Go!

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. 

Cutest cry EVER!

Will was a bit emotional today while I was holding him. And I LOVED it!! I was soooo happy to hear his little cry! Sweet boy! Music to my ears!

2 months!

My little man is 2 months old today and 3 lbs 11 oz!! 

My little peanut

A dream

I thread my arm through the car seat and make my way down the hall. Will gives out a little cry and I realize he must be hungry. How could I have forgotten to nurse him!

I lovingly unbuckle his growing body and his eyes shine up at me. My heart swells at the sight of him. I sit in our spot by the window and let him latch. As he starts to nourish his body, I contentedly lean my head back and sigh. His chubby hand finds my hair and he glances up at me as if to say, "Thanks for the milk!" I smile as he continues and my heart warms. 

I wake to the sound of rain. 

It was just a dream.

A most perfect and wonderful dream. 

I look out my pelted window at the angry waves below. So much turmoil. 

I reflect on my own turmoil. How can I dance through this storm? How will I find the strength? 

I think about Peter as he put his feet over the boat. He knew that through his faith, he could walk on water. With his eyes on the Savior, he could do something that seemed impossible. 

I pray with all my heart I can be like Peter. 

More tears

I fix my eyes on the neurologist and try to focus on what she is saying.

"His brain is significantly underdeveloped. I don't suspect he'll ever be able to walk, eat, or communicate like you or I," she says. "He'll be severely disabled."

My heart drops. I want to be anywhere but here in this moment. I grip Tyler's hand and hold onto it like a life line. This can't be happening. What about all the prayers being said for Will? What about all the faith? Isn't it enough?

She leaves the room and Tyler and I sit alone holding our precious bundle. He opens his eyes and looks at us as if to say, "I'm here! I'm OK!"

I don't know what to believe. I've always felt he's going to be OK. But I guess "OK" sometimes isn't what we think.

The tears don't stop. I go from feeling despair to feeling peace and then back again. It's a roller coaster I've never experienced.

The only thing to do now is continue on. It is so hard, but we have to do it. I once told Tyler that through our trials, we can either be happy and look for the good, or we can be bitter and let the negative consume us. Either way, it's in the Lord's hands.

I do know one thing. No matter what happens, this angel is mine forever.

And we will give him the best life possible.

More seizures

I sit in my happy place snuggling Will. I haven't been able to wipe the smile off my face all day. He's such a fighter, I can feel it.

Call me crazy but I love the smell of his breath. I put my nose down close and breath in his scent. It's sooo sweet.

The doctor comes in with a somber look on his face. My heart suddenly starts beating faster and I brace myself.

"The results are back from Will's repeat EEG," he begins. "It definitely doesn't look normal. We saw two seizures.. even though he's taking anti-seizure medication."

The smile that I couldn't wipe off my face is gone.

More seizures. 

I have been so focused on Will's progress with his lungs, I haven't even thought much about his potential brain malformation. The ultrasound shows "abnormal findings". But of course they don't know what that means for Will. And now he's having more seizures.

The nurse informs me that the more seizures he has, the more damage his brain receives. She tells me they're starting an IV and giving him a new anti-seizure medication, followed by another EEG to make sure it's effective.

More questions and more waiting.

Yeay!

Will is doing FANTASTIC on the cpap!! Yeay! He also weighed in at 3 lbs 1 oz today! AND we got a picture of him with one of his first outfits on. :) Big day for Mr. Will. I can't stop smiling!

CPAP?

The doctor made another adjustment on Will's ventilator settings this evening. If his blood gas at midnight looks good, they'll try to switch him from the vent to CPAP again! So excited and anxious at the same time!

The little things

My sweet boy. 

His eyes rest on mine and I feel a new sense of joy. I try to communicate with him, to tell him to keep fighting. I rest my fingers on his delicate skin and love feeling his softness.

Why am I so blessed? 

I glance at his stats and am relieved to see that everything looks great. He seems to be comfortable. His oxygen has been around room air all day!

I look back at my little man and see loads of bubbles drifting down his chin. I LOVE being able to do things for him.. even if it's just wiping his slobber. :) I mop up his face, careful to not bother the face tape holding his breathing tube in place. To clean out his mouth, I use a saline-soaked Q-tip and swirl it around. To my surprise, he starts to suck on it! It's funny how excited I get over something so small, but I can't help it. I sit there for a few minutes and thoroughly enjoy watching him use the Q-tip as a binky.

Feeling so blessed, just to be close to him. I love him more than words can say.

CPAP and Bradies

February 9th

As I wait on the line for Will's nurse, I start to hum along with the "please hold" music. I've memorized every song. The tune of this particular one is upbeat and happy, but I can't help but feel anxious. His nurse answers and I immediately know there's something wrong. My heart skips a beat and I hesitantly ask her how my big guy is doing.

"He's had a rough night," she says.

My heart skips two more beats and I don't want to ask for further details. But I do. She tells me that Will had an episode where he bradied.

Bradied? 

I know I've heard this term before. I can't remember what it means but I know its not a good thing.

She tells me, "Will's heart rate dropped to 40 and his oxygen saturation was at 30%. He turned pale and it took him a while to come back."

So I was right. Brady is not a good term. But why did he brady? Apparently, there was a lot of milk in the back of his throat. Which can only mean he has reflux. In premature babies, reflux can cause a decrease in their heart rate because when the milk comes back up, it stimulates the vagus nerve. At least that's what they think happened. 

And the roller coaster continues. 

February 10th

More bradies. Some days it is so hard to keep the faith.. to keep going. I drive home from my short NICU visit and my heart feels so heavy. The emotional ups and downs are wearing on me. The tears start and I let them come.

The next track on my CD starts and all of a sudden, my emotion turns from pain to peace. I had been listening to the music from "The Lamb of God", which tells about the Savior's last days and His resurrection. At the beginning of this particular song, Thomas didn't have enough faith and didn't believe the apostles when they told him they had seen the Lord.

He sings,

"You've seen the Lord? 

You've seen Him risen? 

You've seen His hands and touched His side and you are certain? 

But I've not seen Him. 

And I must see Him. 

Until I've seen His wounded side, until my hands have felt His hands, 

I will not know nor yet believe." 

Thomas then sees the Lord for himself. The song continues and he pleads with the Savior to help him with his faith.

"My Lord and my God, touch my lips and bid them sing words my tongue would not conceive. 

That my soul my join in praise and forevermore believe. 

Oh touch my heart and bid it know. 

Thou hearest every plea and though I may not see yet thou wilt make me whole again."

The hards days will come. And when I don't feel like I can keep going, I, like Thomas, will plead for my Savior to help me with my faith.

February 12th

I drive to the hospital as soon as Mr. Brigs goes to preschool. I'm pretty sure my car takes me there as if on auto-pilot. Today is a big day for Will. His blood gases have been excellent the last few days and the doctors have been able to ween him on the ventilator. Sooo, they're going to give the CPAP a whirl.

I'm feeling anxious as I walk into the hospital entrance. As I stand in the elevator, I can't help but listen to a conversation a young teenage girl is having with her mother. It is apparent the girl has just given birth. She is very mad at her doctor because her newborn baby had a few bruises after birth.

Bruises?

I want to turn to her and ask if she would rather her baby be breathing or have bruises. But I don't. I choke back my tears and take a deep breath.

I walk into Will's private room and notice extra equipment. They are getting ready to take his breathing tube out. I stand by as they get everything ready and his heart suddenly drops. I immediately start to pat his back and tell him he's OK. But my heart is beating so hard I think it might stop. Maybe I'm over-reacting but I can't help it.

He recovers after a few agonizing minutes and they change him over to the CPAP machine. Now he's doing all the breathing on his own! I keep cheering him on as his chest heaves in and out. I sit by his side for a few hours then leave to take care of my other children. When I get home, the first thing I notice is that my house is clean. My dear sweet friend snuck into my house and cleaned it for me! I have so many angels in my life. A little later, I call into the hospital to get an update. Will's oxygen level is pretty high and he's fighting so hard to keep breathing.

Back to the ventilator.

My good friend gave me some good advice. She said, "Don't be too disappointed if he has to go back on the ventilator. He'll get to the CPAP eventually." Because of this comment, I was mentally prepared for Will to take a step backwards.

I'm just grateful to have him for another day. I love him to pieces and long to have him home where I can snuggle him anytime I want and change his diapers and clean his spit up.

That will truly be heaven on Earth. 

more updates. :)

Will is doing pretty good. He continues to do well on the ventilator! They are going to ween him a little bit tonight and see how he does. He's been at about 25% oxygen which is great! He's also gained some weight. He's almost 2 lbs 7 oz! Starting to get rolls. :)

Changing his diaper tonight was an adventure. We had a not-so-preemie explosion in the incubator. That's my boy! He's pooping great!

I was given some good advice from one of the doctors the other day. She said, "I want you to find at least one good thing with Will each day and focus on that." It has been so good for me! I have decided to store away his "problems" and potential "issues" and focus on all the good things that are happening. It has been really good for me. :)

It has been so humbling to realize how many people are praying for my little guy. On Sunday, I was completely overwhelmed at how many church members approached me and told me we are in their prayers. How could I ever find the words to express my gratitude?

Thank you everyone. SO much!

Faith

I was reading in the scriptures and was drawn to Doctrine and Covenants 35: 8-10. It says,

8 For I am God, and mine arm is not shortened; and I will show miracles, signs, and wonders, unto all those who believe on my name.

9 And whoso shall ask it in my name in faith, they shall cast out devils; they shall heal the sick; they shall cause the blind to receive their sight, and the deaf to hear, and the dumb to speak, and the lame to walk.

10 And the time speedily cometh that great things are to be shown forth unto the children of men;

When we started this journey with Will, it was not easy to have faith. I kept thinking, 'How could I possibly have faith in a miracle when it hasn't happened for us in the past?' We had so much faith that Heavenly Father would save our daughter. But she died. Then the questions began. Why do bad things happen to good people? Aren't we good parents? Did we not have enough faith? The pain of that experience is still with me every day. So how can I possibly have faith through this experience?

It is a daily choice. Does Heavenly Father love me? Without a doubt. Does he want what's best for me? Of course. But sometimes we don't know what that might be. I know one thing, I wouldn't trade the things I've learned and the strength I've gained through my experiences. Besides, who's to say a miracle DIDN'T happen? Our perfect baby girl was brought into this world to receive her body. I get to be her mother forever. Is that not a miracle?

After reading this scripture in Doctrine and Covenants, I felt a sure hope blossom in my heart. I DO have faith that Heavenly Father can heal Will. I KNOW He can do it. Does that mean He will heal him? That is to be seen. But I know He can, and that's the point. I need to hold onto my faith and hope. I need to know at the end of the day that I've given Will everything I have. But more importantly, I need to know I've given my Savior everything I have.

"Doubt your doubts before you doubt your faith."~ President Dieter F. Uchtdorf

Perfect Love

I put this together to express my appreciation for my Savior. His love is perfect. 

Updates

We sit down with the doctor and the knot in my stomach gets tighter. I'm nervous to see what he has to say, what updates he will give us.

As he pulls up the latest ultrasound on Will's brain, my heart starts to pound. The images pop up on the computer screen and he starts to explain the latest findings. 

The ventricles are smaller.

The cyst is smaller.

The texture of his brain looks normal, whereas before, it looked abnormal. 

I breathe a deep sigh of relief. 

More miracles .. and I can only thank my Heavenly Father.

The doctor continues and tells us there is one thing that is still concerning. There is a significant amount of fluid in the space between his brain and the skull. What does this mean for him? They don't know. Only time will tell. 

We move on and talk about everything else. 

The doctor goes through each system and gives us a full update on how everything is looking. 

Will's lungs are getting better. He is doing well on the new ventilator! He is digesting milk and is pooping without suppositories! His kidneys are functioning and he is peeing ok. His liver looks good. 

I start to realize how blessed we truly are. My heart swells with the deep love I have for our son. I look over at his tiny frame and marvel at his strong-willed spirit. We are so blessed!

What could make this day better? Holding my little man. 

As the nurse gently places him against my chest, I feel a burst of joy. I sit caressing his baby soft skin and breathe in his sweet smell. I am in LOVE.

 I realize now all the things I took for granted with my first two babies. I held them the first day. We were able to take them home from the hospital with us. I nursed them! All of these things flood my mind as I sit here snuggling my little guy. I want to be grateful for every single moment I get with him. I don't want to take anything for granted ever again. 

After 3 precious hours, it's time to place Will back in the incubator. 

My only consolation is that I get to hold him tomorrow.  

Switching over

They made the switch! His first two blood gases have shown that he is tolerating the ventilator OK. So far so good! Hopefully he'll keep it up.

Oh and did I mention I get to hold him today? It's been a few weeks. I can't wait to snuggle my little guy for a couple hours.. Pure heaven!

Good days

Will is down on his oxygen requirement. The doctors are even going to switch him from the oscillator to a traditional ventilator! Big step for my little man. I'm a bit nervous because last time they made that switch, he went downhill pretty quickly and they had to put him back on the oscillator after two days.  We'll see what happens. 

I have been feeling more hope the last two days. Will seems more comfortable.. less agitated. He usually gets pretty mad when anyone messes with him. It's actually pretty cute because he flings his scrawny little legs and arms all over the place. :) But he has been a little more calm lately. 

We will be meeting with a group of doctors and nurses tomorrow evening to lay everything out on the table. Whew.

Thank you all for your continual love and prayers! 

Roller coaster

January 25th 6:30 am

I wait on the phone and tears start falling. Images of my baby having seizures flood my mind and I can't make them stop. My palms start to sweat and my heart is racing as I wait for the Doctor's update.

He finally picks up and tells me it's not good. My heart can't quite understand what my ears are hearing. He continues and tells me that we have the option to discontinue support if we wish. What?? I'm sure I didn't hear him right. My voice catches as I stutter a goodbye and hang up the phone. As I walk numbly to my room and fall into bed, his words tumble in my mind and I try to make sense of them. I start sobbing as I relay the conversation to my husband. We hold hands and pray like we've never done before. 

9:30 am

We drive in silence. There is a horrible desperation hanging in the air as we make our way to the hospital. I hold Tyler's hand like a lifeline. I don't know if I can face what the day might bring. 

We arrive at the NICU and I see my baby lying there in all his tiny cuteness. 

And I feel my heart break.

The nurses bustle around us and we reach our hands through the openings of Will's incubator. The feeling of helplessness almost overwhelms me.

We talk to the Doctor and he explains that our baby will continue the anti-seizure medication for the time being. He can't get an MRI done until he's completely off ventilation, which won't be for another few months. So... we wait. No answers. No reassurances. 

The tears don't stop. I didn't know I had so many. 

We drive home and go through the routine of brushing our teeth and getting ready for bed. It's such a normal thing to do.. it feels weird. 

January 26th

I slowly wake and for a brief second, the horror of the day before is not in my thoughts. But then it all comes crashing back and I desperately want to go back to sleep. 

Today is Sunday. Time for church. 

I shower and get the kids ready and we miraculously make it on time. I go through the motions of smiling at people, chatting, telling everyone "things are Ok" when they ask. But things are not OK. I attend the last hour and feel a glimmer of peace. I can't even remember what the lesson was about.

After church, the kids and I make cupcakes. It feels sooo good to be in the kitchen with my two sweet ones, baking together. 

As Tyler and I enter the NICU in the evening, there is a different Doctor working. I suddenly feel anxious to get his perspective on Will's outlook. We talk with him and he gives us a lot of hope. He admits that Will very well could have significant mental problems. But he may not. Time will tell. 

After our talk, the nurse takes the top off of Will's incubator. Oh my sweet baby! I put my face down next to him and nuzzle his soft belly, breathing in his scent. I am in heaven. I wash his hair and change his diaper and I can't think of one thing I'd rather be doing. I lay my head next to him again and sing him quiet songs. This is how it should be. Always. 

We leave the NICU and I am floating. 

We pray before bed and thank Heavenly Father for such a miraculous little boy. No matter what happens, he is ours forever. I will always be his mama. 

Another step back

Will's been having seizures for the last three hours. I don't know what else to say except please continue to pray. Love you all..

Waiting

Who would have thought someone could get excited about their baby reaching the 2 lb. mark? Will is 2 lbs!! Hooray!

I loved doing his care today. Whenever I change his diaper, I can't help but chuckle when I see his little bum cheeks. They're just so cute and tiny! He looks like a little frog! I can't wait for the day when I can blow raspberries on his fat rolls. :)

The doctors don't really have any news. Which is good I guess. We're hoping to have a boring couple of weeks and let him grow and get stronger.

It's amazing how much love I feel for this little man. I love to sit by him and reach my hands through the openings of his incubator. I feel his soft skin and sing quiet songs. It's a sacred time between me and my little one. I long to open up the top and scoop him up in my arms. That day will come, I have to have faith that it will. He is so strong and so many people are praying for him.

It's quite humbling. 

Strong-willed Warrior

Will means a "strong-willed warrior". Can any name be more perfect for my little man?

Hearing his cry at birth is one of my most cherished moments. It pierced right through to my soul.

Fast forward two weeks.

Tonight, Tyler and I sat next to Will's tiny frame and marveled at his perfectly shaped fingers. Will held my finger tightly as he continues to cling to life.

The Doctor explained again some of Will's problems he is dealing with.

He has been battling Pulmonary Interstitial Emphysema in one lung, and the other lung is having a hard time staying inflated. Both lungs have fluid in them. He also has Patent Ductus Arteriosus in his heart. These two things alone are actually fairly common in premature babies. But in Will's case, the PDA is causing his lungs to have more fluid in them. Will also has what appears to be a hemorrhage near one of the ventricles in his brain. The ventricles are also measuring big. The medication used to help the PDA can cause the hemorrhage to worsen. But the doctors don't really have a choice.

Will just finished the round of medication for the PDA in hopes to help the lungs at well. We found out tonight that the medication closed the PDA by 40%! The doctors seemed pleased.

Now is the waiting game. We need the little man to gain weight and get stronger.

Before Tyler and I left tonight, we held hands and said a prayer. I felt a peace wash over me and we pleaded, yet again, for our Heavenly Father to protect Will through the night while we are gone. I know the nurses take good care of him, but I love knowing he has angels standing watch as well.

Good night, my sweet one. Keep being my strong-willed warrior.