A few days ago, Wyatt got the go ahead to be in charge of his feedings. He is to wake up and tell us when he's hungry. Of course, we don't let him go more than 4 hours. But this is a big step. This is a "going home" step.
They both have been working hard on feeding by bottle or nursing. Once they start to eat 75% of everything by mouth, they go ad lib with feedings. Cameron is at 71%.
So close.
Then they have to do 48 hours of ad lib feedings without losing weight. And since they're off oxygen (yay!) and their ROP is regressing (yay!), feeding by mouth is the only thing keeping them in the NICU.
Well, Wyatt has been doing well with feeding ad lib. And while we have been talking about going home and things, I wasn't really prepared for today.
"In the next few days, you need to bring Wyatt's car seat in for the test," the nurse said.
The car seat test is this-
They feed the baby and then put them in the car seat for 90 minutes and monitor for them to desat.
The car seat is done about two days prior to being discharged.
This means Wyatt is going to be coming home soon.
Que minor anxiety attack.
And Cameron isn't far behind.
It is the greatest and scariest gift ever.
No matter what
Monday, January 30, 2017
Sunday, January 22, 2017
Day 89
Listening to the doctors "round" on my boys, I overheard them say it was day 89. It hit me in the chest like a brick.
In 89 days, our boys have fought pneumonia, pulmonary hypertension, sepsis, brain bleeds, anemia, and many other conditions. They've been poked and prodded, tubes put down their throats and into their stomachs.
For 89 days we've been NICU parents. We've traveled back and forth to the NICU, talked to doctors and nurses, every day for 89 days.
For 89 days we've been parents and we've yet to take care of our babies on our own.
For 89 days, all four of us have survived this trip that could only be described as going to hell and back.
89 days.
That's a quarter of a year.
That's 712 times that I've sat and pumped to provide milk for our babies.
That's almost 3,400 miles traveled to go see them.
They've grown from 1 lb 8 oz and 1 lb 10 oz to 5 lbs 10 oz and 5 lbs 13 oz. They now weigh what I had hoped they would when I gave birth. They're beautiful pink and plump boys who simply need to gain the strength and stamina to take all of their feeds by mouth and then they can go home.
Looking at them, you'd think they were healthy newborns. You'd think they were only days into life, not months already. They smile. They chew on their hands when they're hungry. They cry when they need a diaper change. They stare at their mobiles with wonder. They love snuggling and stroking their hair makes them close their eyes in bliss. Their stay in the NICU doesn't show in their faces. They're glad to be here. They're happy for each day, all 89 of them.
89 days.
89 days ago, two super heroes came into our lives.
In 89 days, our boys have fought pneumonia, pulmonary hypertension, sepsis, brain bleeds, anemia, and many other conditions. They've been poked and prodded, tubes put down their throats and into their stomachs.
For 89 days we've been NICU parents. We've traveled back and forth to the NICU, talked to doctors and nurses, every day for 89 days.
For 89 days we've been parents and we've yet to take care of our babies on our own.
For 89 days, all four of us have survived this trip that could only be described as going to hell and back.
89 days.
That's a quarter of a year.
That's 712 times that I've sat and pumped to provide milk for our babies.
That's almost 3,400 miles traveled to go see them.
They've grown from 1 lb 8 oz and 1 lb 10 oz to 5 lbs 10 oz and 5 lbs 13 oz. They now weigh what I had hoped they would when I gave birth. They're beautiful pink and plump boys who simply need to gain the strength and stamina to take all of their feeds by mouth and then they can go home.
Looking at them, you'd think they were healthy newborns. You'd think they were only days into life, not months already. They smile. They chew on their hands when they're hungry. They cry when they need a diaper change. They stare at their mobiles with wonder. They love snuggling and stroking their hair makes them close their eyes in bliss. Their stay in the NICU doesn't show in their faces. They're glad to be here. They're happy for each day, all 89 of them.
89 days.
89 days ago, two super heroes came into our lives.
Thursday, January 5, 2017
What's on my shoe?
I've lost track of the number of lessons I've learned so far from the Tiny Mighty Boys. They continually amaze me with their strength and courage. And they possess certain skills that I really never considered of a baby.
Let me start by saying that while I lived in Texas, I had a flock of chickens. I know the change in subject probably gave you a case of whiplash, but let me explain why I bring up my chickens.
Since I have owned chickens, I am very familiar with a living, breathing, being's capacity for producing a seemingly disproportional amount of poo to their size. Every day I'd let them out of their pen to roam the yard and every day I'd be amazed by the amount of droppings they'd leave. It'd be in piles underneath where they slept. In 8 hours, 4 little birds produced shovel-fulls of feces. I didn't mind because it was great fertilizer for the yard and for my garden.
Now I have two little boys who each weigh less than what my smallest chicken weighed. You know where I'm going with this, don't you... You experienced parents are already nodding your heads and muttering, "Oh you don't know the half of it".
Let me just say that these boys are on fortified breast milk.
The horrors seen by both me and my husband not always contained by a diaper. How can such a little person produce so much?
Both boys are very fussy about their diapers. Once it's dirty, they kindly alert us with a wail. Once it's clean, they're back to being happy boys. My normally very patient little guys will go from happy to my-world-is-not-okay-so-I'm-screaming in no time flat over a dirty diaper. I hope this will make it easier to potty train them.
They let us know about their dirty diapers before they're even done using them. And lifting their legs to slip a diaper underneath them seems to "get things moving" again.
The process goes like this:
They wake from slumber with a scream. So we get all dressed up due to their isolation precautions, but we're seriously considering some plastic gowns for home after what we've seen.
We unswaddle them while talking to them and offer a binkie which may or may not be an acceptable bribe for peace and quiet. We unfasten their cute little preemie outfit, slip a new diaper under them and unfasten one side of the diaper they're currently fussing about. Here's what you do.
You wait.
Because the sound of velcro seems to induce a bowel movement.
You watch and listen for signs of an impending explosion. Perhaps their face is red, eyes going watery as they make their attempt. Or they simply suck on their binkie and stare at you with sweet little eyes. But you wait because experience has taught you that...
Pheerrrrrbt.
Sitting across the room, the nurse raises an eyebrow. You point to the kid. "Seriously, it was him." She smiles. Your spouse looks suspicious.
Pherbt.
Something wet and gooey just hit the diaper.
Oh good. He isn't waiting until you've unfastened the diaper to show you the end result of his fortified milk. The danger is over. It's safe to remove barriers and replace diapers.
You unfasten the other velcro, lift his legs and look inside. Wow that's gross. You inspect the contents and judge the consistency. It's more runny than you'd like to see, but it's the fortification of the milk to get them to grow like weeds. You show the nurse who documents the contents of the diaper. Showing someone dirty diapers instead of quickly disposing of them has become normal to you.
Since their skin is so sensitive, you grab the "bum water", a sterilized bottle of water to sprinkle onto some napkins because baby wipes have been too harsh lately.
The Tiny Mighty you're changing lets out a whimper, makes a sad face and starts to cry. "Oh, it's okay sweet boy. I know the water is chilly," you say to him. You clean his bum. He continues to cry.
Pheerrrbt.
Oh no, he wasn't through! Goo dribbles from his little bum and onto the clean diaper. How did it get so far up his back, you wonder?
No big deal. You get a new diaper and slip it under him. You read his face. He's happy. You feel safe knowing that having two bowel movements within a few minutes means he's done.
Yeah, you experienced parents are shaking your heads and laughing at my naivety. You know.
He kicks his feet while sucking on his binkie. While you are enamored by his sweet face, you don't realize he has kicked the diaper open. You hear a stream of liquid hit the wall beside you. You watch it splatter medical equipment, plastic packages of important looking items a good 18 inches away from him.
The Tiny Mighties have some tiny but mighty bladder muscles!
You quickly fold the diaper back over him while making a noise of surprise and shoot the nurse an apologetic look. She offers to help you clean the wall and everything he's peed on, explains that this isn't a first time, but you seriously feel guilty about your child peeing on the NICU room. Other more experienced parents later tell you, "They're boys. Get used to them peeing on stuff for fun."
While urine continues to run down the wall, you grab another diaper and slip it under him. First task is to get the boy changed so he can no longer threaten those around him with his aim.
You clean him up, get the Desitin and shmear it on his little fanny.
Pherrrrbt.
Oh for the love of... You look. Diaper is clean. You'd wipe your forehead in relief but you know where your hand has been.
Baby cries.
PHEERRRBT, squish!
Brown goo is leaking from your son!
You sigh and grab another diaper while the nurse is suppressing a laugh. She's seen all of this before.
Diaper goes under the boy. You wait a moment until it seems to be all clear. You remove the soiled diaper, lean over to toss it and BOOM!
An explosion of brown slaps the new diaper which, luckily, has a tendency to curl upward otherwise who knows where poo would have ended up. It is so startling that you actually jump back a foot and stare at your little cute dumpling. How on earth...?
I've managed to cut down on the number of diapers by lifting their legs several times or bicycling their feet before starting to change their diapers. I stupidly bragged to Cameron one day that I had him figured out after he loudly used his diaper a few times before I even began to peel back the velcro.
But I was quickly reminded of who is boss as the song of his bowels floated into the air and the climax of the music shot across his crib, splattered his food pump and hit the ground two feet away with a smack. A droplet bounced and hit my plastic gown near the bottom. As I inspected my person for poo, I noticed it was only half a droplet and there was something wet on my shoe.
Turns out, it was bum water, but I'm sure it's not the last time I'll wonder out loud "What's on my shoe?"
Let me start by saying that while I lived in Texas, I had a flock of chickens. I know the change in subject probably gave you a case of whiplash, but let me explain why I bring up my chickens.
Since I have owned chickens, I am very familiar with a living, breathing, being's capacity for producing a seemingly disproportional amount of poo to their size. Every day I'd let them out of their pen to roam the yard and every day I'd be amazed by the amount of droppings they'd leave. It'd be in piles underneath where they slept. In 8 hours, 4 little birds produced shovel-fulls of feces. I didn't mind because it was great fertilizer for the yard and for my garden.
Now I have two little boys who each weigh less than what my smallest chicken weighed. You know where I'm going with this, don't you... You experienced parents are already nodding your heads and muttering, "Oh you don't know the half of it".
Let me just say that these boys are on fortified breast milk.
The horrors seen by both me and my husband not always contained by a diaper. How can such a little person produce so much?
Both boys are very fussy about their diapers. Once it's dirty, they kindly alert us with a wail. Once it's clean, they're back to being happy boys. My normally very patient little guys will go from happy to my-world-is-not-okay-so-I'm-screaming in no time flat over a dirty diaper. I hope this will make it easier to potty train them.
They let us know about their dirty diapers before they're even done using them. And lifting their legs to slip a diaper underneath them seems to "get things moving" again.
The process goes like this:
They wake from slumber with a scream. So we get all dressed up due to their isolation precautions, but we're seriously considering some plastic gowns for home after what we've seen.
We unswaddle them while talking to them and offer a binkie which may or may not be an acceptable bribe for peace and quiet. We unfasten their cute little preemie outfit, slip a new diaper under them and unfasten one side of the diaper they're currently fussing about. Here's what you do.
You wait.
Because the sound of velcro seems to induce a bowel movement.
You watch and listen for signs of an impending explosion. Perhaps their face is red, eyes going watery as they make their attempt. Or they simply suck on their binkie and stare at you with sweet little eyes. But you wait because experience has taught you that...
Pheerrrrrbt.
Sitting across the room, the nurse raises an eyebrow. You point to the kid. "Seriously, it was him." She smiles. Your spouse looks suspicious.
Pherbt.
Something wet and gooey just hit the diaper.
Oh good. He isn't waiting until you've unfastened the diaper to show you the end result of his fortified milk. The danger is over. It's safe to remove barriers and replace diapers.
You unfasten the other velcro, lift his legs and look inside. Wow that's gross. You inspect the contents and judge the consistency. It's more runny than you'd like to see, but it's the fortification of the milk to get them to grow like weeds. You show the nurse who documents the contents of the diaper. Showing someone dirty diapers instead of quickly disposing of them has become normal to you.
Since their skin is so sensitive, you grab the "bum water", a sterilized bottle of water to sprinkle onto some napkins because baby wipes have been too harsh lately.
The Tiny Mighty you're changing lets out a whimper, makes a sad face and starts to cry. "Oh, it's okay sweet boy. I know the water is chilly," you say to him. You clean his bum. He continues to cry.
Pheerrrbt.
Oh no, he wasn't through! Goo dribbles from his little bum and onto the clean diaper. How did it get so far up his back, you wonder?
No big deal. You get a new diaper and slip it under him. You read his face. He's happy. You feel safe knowing that having two bowel movements within a few minutes means he's done.
Yeah, you experienced parents are shaking your heads and laughing at my naivety. You know.
He kicks his feet while sucking on his binkie. While you are enamored by his sweet face, you don't realize he has kicked the diaper open. You hear a stream of liquid hit the wall beside you. You watch it splatter medical equipment, plastic packages of important looking items a good 18 inches away from him.
The Tiny Mighties have some tiny but mighty bladder muscles!
You quickly fold the diaper back over him while making a noise of surprise and shoot the nurse an apologetic look. She offers to help you clean the wall and everything he's peed on, explains that this isn't a first time, but you seriously feel guilty about your child peeing on the NICU room. Other more experienced parents later tell you, "They're boys. Get used to them peeing on stuff for fun."
While urine continues to run down the wall, you grab another diaper and slip it under him. First task is to get the boy changed so he can no longer threaten those around him with his aim.
You clean him up, get the Desitin and shmear it on his little fanny.
Pherrrrbt.
Oh for the love of... You look. Diaper is clean. You'd wipe your forehead in relief but you know where your hand has been.
Baby cries.
PHEERRRBT, squish!
Brown goo is leaking from your son!
You sigh and grab another diaper while the nurse is suppressing a laugh. She's seen all of this before.
Diaper goes under the boy. You wait a moment until it seems to be all clear. You remove the soiled diaper, lean over to toss it and BOOM!
An explosion of brown slaps the new diaper which, luckily, has a tendency to curl upward otherwise who knows where poo would have ended up. It is so startling that you actually jump back a foot and stare at your little cute dumpling. How on earth...?
I've managed to cut down on the number of diapers by lifting their legs several times or bicycling their feet before starting to change their diapers. I stupidly bragged to Cameron one day that I had him figured out after he loudly used his diaper a few times before I even began to peel back the velcro.
But I was quickly reminded of who is boss as the song of his bowels floated into the air and the climax of the music shot across his crib, splattered his food pump and hit the ground two feet away with a smack. A droplet bounced and hit my plastic gown near the bottom. As I inspected my person for poo, I noticed it was only half a droplet and there was something wet on my shoe.
Turns out, it was bum water, but I'm sure it's not the last time I'll wonder out loud "What's on my shoe?"
Wednesday, January 4, 2017
Another hurdle
Babies who are born weighing less than 1200 grams or born before 31 weeks gestation are at an increased risk of developing Retinopathy of Prematurity (ROP). It has to do with how blood vessels grow along the retina. When they begin to grow abnormally, they have ROP. When those vessels become dilated and twisted, they have ROP with "Plus Disease" and need treatment because without treatment, those vessels can cause retinal detachment which means blindness.
So I bring frustrating news.
The boys have been getting eye exams once a week to watch for this. Last week, they had "mild ROP". This week they have Stage II with "some Stage III" (the stages are explained in the link I posted above). They don't have Plus Disease so they're not treating it yet. And at this stage, it could stop progressing and the boys go on to develop normal vision. Or, next week they may need eye surgery. Or a medication injected into their eyes.
It's more waiting and hand wringing for me, another hurdle for them and today I've kind of reached a limit with it. My frustration is making my head throb and I'm quite short tempered today.
I really want to have two healthy happy little boys that simply need to eat, grow and get fat little baby legs.
Maybe we'll get lucky and their ROP will stop progressing. If you could send up a prayer for them...
So I bring frustrating news.
The boys have been getting eye exams once a week to watch for this. Last week, they had "mild ROP". This week they have Stage II with "some Stage III" (the stages are explained in the link I posted above). They don't have Plus Disease so they're not treating it yet. And at this stage, it could stop progressing and the boys go on to develop normal vision. Or, next week they may need eye surgery. Or a medication injected into their eyes.
It's more waiting and hand wringing for me, another hurdle for them and today I've kind of reached a limit with it. My frustration is making my head throb and I'm quite short tempered today.
I really want to have two healthy happy little boys that simply need to eat, grow and get fat little baby legs.
Maybe we'll get lucky and their ROP will stop progressing. If you could send up a prayer for them...
Sunday, January 1, 2017
Happy New Year!
I'm soooo looking forward to 2017 with these two sweet boys.
(Wyatt is the blue sign, Cameron is the red sign)
(Wyatt is the blue sign, Cameron is the red sign)
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