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.
Thursday, November 13, 2014
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.
Sunday, June 22, 2014
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.
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.
Monday, June 16, 2014
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.
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.
Tuesday, May 27, 2014
Feeling grateful
My head hits the pillow for the 5th 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.
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