I stand by the front door holding my baby Will close. The medical examiner standing on the porch extending his arms toward me. I know what I need to do but don't know if I can do it. It's time to place my precious boy into the arms of a stranger, watch as he carries him away, then places him in his truck. My arms instinctively tighten around Will's body and my heart feels like it's being ripped out. The medical examiner patiently waits as a battle continues in my mind. My head tells me it's time to let him go, but my heart won't accept it. Tyler puts a hand on my back as I secure Will's blanket around him and finally place him in the man's waiting arms. He promises to be gentle. He promises to keep him warm in his blanky. But I can hardly hear what he's saying. I turn around as the door closes and Tyler envelops me in a tight embrace. We stand there together clinging to each other. The enormity of what has happened crashes down on us.
Our sweet boy is gone.
Sunday, May 31, 2015
Sunday, May 10, 2015
December 27th 2014
Every time I sit down to write this post, my fingers stay frozen on the keyboard and my mind is blank. I long to convey the smallest portion of my heart, but my words are inadequate. My heart is overflowing with unspoken emotions.
I fear it will burst.
December 27 2014
I press his warm body next to mine and hold him tight. The end is close. So close.
Tyler calls Brigham and Lucie into the room to say goodbye. They slowly come in and my heart feels so heavy. I don't want to say what we have to say. I don't want to be here in this moment. But sometimes we have to do hard things we don't want to do. So we tell them that it's time for Will to go home. We tell them he gets to go be with Molly and Sam. I say the words. I hear them coming out of my mouth, but it doesn't seem real.
The five of us sit together on the bed and take turns telling Will how much we love him, how much we'll miss him. We all sing lullabies and cradle him and stroke his hair. We cry and kiss and speak words of love. We talk about our favorite memories with him and laugh, then cry again. Then it's time for me and Tyler to be alone with our sweet one. We don't want Lucie and Brigham in the room when he passes.
The door closes behind the kids as they leave. The sound of Will's labored breathing fills the bedroom and I suddenly feel as if my lungs can't get enough air. I hold him closer and nuzzle my nose in his neck. I breathe in his sweet smell and wish I could freeze this moment forever. I suddenly can't take it anymore and ask Tyler to turn on some music. We turn on The Lamb of God by Rob Gardner and I instantly feel better. There is a sweet peace in the room and I imagine all of the angels surrounding our warrior to welcome him home.
He fights to the end. Every last breath.
And that's who Will is. He's a fighter. He's our warrior. But, as one of Will's nurses said, "sometimes little soldiers get tired, and that's OK."
So we tell him it's OK. We tell him that Mommy and Daddy will be OK. We hold him so tight and whisper to him, "It's Ok to go. We'll see you soon. It's OK to rest."
As he takes his last breath, he lets out an adorable classic "Will yawn".
And then he's gone.
I look at our baby who has just been welcomed by so many loved ones, and I think he's the most beautiful baby I've ever seen. My chest hurts with the love I have for him. Coupled with that love, is the love I feel for the One who has made it possible for us to be with Will again.
I try to hold onto this peace, this light surrounding us as we hold our baby Will. I know we'll be with him again.
I know it.
I fear it will burst.
December 27 2014
I press his warm body next to mine and hold him tight. The end is close. So close.
Tyler calls Brigham and Lucie into the room to say goodbye. They slowly come in and my heart feels so heavy. I don't want to say what we have to say. I don't want to be here in this moment. But sometimes we have to do hard things we don't want to do. So we tell them that it's time for Will to go home. We tell them he gets to go be with Molly and Sam. I say the words. I hear them coming out of my mouth, but it doesn't seem real.
The five of us sit together on the bed and take turns telling Will how much we love him, how much we'll miss him. We all sing lullabies and cradle him and stroke his hair. We cry and kiss and speak words of love. We talk about our favorite memories with him and laugh, then cry again. Then it's time for me and Tyler to be alone with our sweet one. We don't want Lucie and Brigham in the room when he passes.
The door closes behind the kids as they leave. The sound of Will's labored breathing fills the bedroom and I suddenly feel as if my lungs can't get enough air. I hold him closer and nuzzle my nose in his neck. I breathe in his sweet smell and wish I could freeze this moment forever. I suddenly can't take it anymore and ask Tyler to turn on some music. We turn on The Lamb of God by Rob Gardner and I instantly feel better. There is a sweet peace in the room and I imagine all of the angels surrounding our warrior to welcome him home.
He fights to the end. Every last breath.
And that's who Will is. He's a fighter. He's our warrior. But, as one of Will's nurses said, "sometimes little soldiers get tired, and that's OK."
So we tell him it's OK. We tell him that Mommy and Daddy will be OK. We hold him so tight and whisper to him, "It's Ok to go. We'll see you soon. It's OK to rest."
As he takes his last breath, he lets out an adorable classic "Will yawn".
And then he's gone.
I look at our baby who has just been welcomed by so many loved ones, and I think he's the most beautiful baby I've ever seen. My chest hurts with the love I have for him. Coupled with that love, is the love I feel for the One who has made it possible for us to be with Will again.
I try to hold onto this peace, this light surrounding us as we hold our baby Will. I know we'll be with him again.
I know it.
Friday, December 26, 2014
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.
Thursday, November 13, 2014
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.
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.
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.
Saturday, September 27, 2014
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?'
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?'
Monday, June 30, 2014
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.
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.
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