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.
Monday, June 16, 2014
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.
Wednesday, May 21, 2014
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.
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.
Sunday, May 11, 2014
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.
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!
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.
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!
Saturday, April 26, 2014
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.
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."
Thursday, April 24, 2014
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.
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.
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