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.

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?"

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...

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)

A little bit of normal, a little bit of NICU

The Tiny Mighties are doing really well. We were talking to the nurse just yesterday about how amazing it was that they were able to be on the regular nasal cannula considering they were born at only 25 weeks gestation. Somewhat of a miracle actually. Currently they're a few ounces short of 4 lbs.

While we're going about some more "normal" things that you do with babies, a little bit of NICU life still intrudes.
Cameron is anemic which they've been watching closely. He's at the age where his bone marrow should be mature enough to start making red blood cells.
Several weeks back, Wyatt was anemic and he proved that his bone marrow hadn't been ready. He got low enough that his gut slowed down and we had a NEC scare. They had to go through a "rule out" where they go through labs, withhold feedings, and a bunch of other stuff to determine if he has whatever bug they're concerned about. Wyatt had 48 hours of no feedings, which made him very angry and then slowly they had to introduce his feedings back, gradually increasing until he's back up to full feeds.
When I heard Cameron was anemic, panic hit and my mind has been running nonstop about how to prevent Cameron from going through a NEC rule out like Wyatt had.

There's a catch-22 with anemia and their age. They have to become anemic in order for their body to signal their bone marrow to make red blood cells. But with anemia comes more desat episodes. They sleep a lot which with Cameron, is interfering with his learning to nurse and of course, if the anemia is severe enough, it can cause what Wyatt had to go through.
If they give them blood, then their body thinks they made red blood cells and their bone marrow doesn't kick in. You wait to see if he gets better or worse knowing they can't check labs every day because that'll make them even more anemic. You just watch for signs in him to see if he's getting worse.

The plan has been to give Cameron iron and wait. It drives me crazy but I understand the process. Lots of hand wringing and fretting as of late, but we got good news. Cameron has enough iron and his labs show that he's working hard at making some red blood cells. Way to go Cameron!!

So lets concentrate on a little bit of normal.
They're getting better at controlling their body temperature so it was time for their first real bath! Here's Cameron in his bucket.

They were both a little confused at first but then seemed to enjoy spa time. We wrap them in a blanket during their bath to help keep them warm and pull out one limb at a time to wash.

Both boys love their binkies but Wyatt has really taken off with nursing. I think Cameron is close behind and once his blood counts are back up, he'll be off and running as well. Cameron will latch a time or two but is then tired. Wyatt can nurse for a few minutes and then wears out. With them being only 34 weeks gestational age, they wear out quickly.

A sweet little moment when Wyatt seemed to notice me.

One of the problems with being a preemie and nursing is that my supply is that of 8 week old twins. But the boys are just starting. Usually the mother's supply starts out with maybe a teaspoon and gradually increases along with the baby's ability. Complications arise when you have a preemie too young to nurse but have to pump to keep a supply.
If I just put them to breast, it'd be like them trying to drink from a firehose and could actually put them off of nursing. To get around this, I have to pump first so they can play around and only get a small amount of milk if they nurse. Gradually, I'll shorten the amount of time I pump so they're not flooded with milk but can feel like their nursing is getting them rewards. Eventually they'll get strong enough and smart enough to figure out how to control the flow. Then I'll have babies who can do what normally comes naturally for a full term baby.

At some point, I'll have to spend 5 days at the NICU to establish nursing before they introduce bottles. Even when they go home, they'll have to have some fortified feedings, which would be by bottle, to get them caught up on their growth. It'll depend on them and the pediatrician as to how long they're taking fortified milk. I might nurse them every other feeding and my husband can give them their fortified milk from a bottle.

The Tiny Mighties have a lot to learn still, but at least their bodies are healthy and strong enough to start!

Merry Christmas

Many people have supported our Tiny Mighty boys who have shown us miracles still happen.
Thank you.

We wish you a Merry Christmas!

First outfits and...?

The Tiny Mighties are preparing to bust out of their isolettes. They've been slowly weaning off the warmers and are now on "air control". The isolettes no longer warm and cool depending on their body temperature. It's close to room temperature air that they're living in and have graduated to outfits.

Cameron got a puppy dog on his butt. They're also on his feet.

Wyatt got little boy blue jammies with mittens since he keeps trying to pull off his oxygen.

First outfits are a big deal in the NICU. They're not as dependent on a perfect environment which means they're getting stronger. Soon it could be bath time!
With this development, we now have choices. We can hold them "skin to skin" or we can hold them swaddled. One of the benefits of holding them swaddled is that we can actually see their cute faces while holding them.

They're also getting really good with their pacifiers. Preemies aren't born ready to nurse. They have to learn to coordinate breathing, sucking and swallowing. They also have to build up their stamina.

Wyatt has really taken off with his binkie. He holds it himself even.

At first, I thought it was coincidence that his hand was holding the binkie, but he's done it enough that we think he's actually, knowingly, holding it himself. Smart boy!
He's also waking about 30 minutes before it's time to eat. He roots around, sticks his hands in his mouth, sucks on his binkie for over a minute and has given the nurses enough cues to tell them he's ready.

Ready for what, you ask?

Ready for non-nutritive nursing.
Sounds like great fun!

It's part of teaching them to nurse and Wyatt is ready to learn. Today was his first day "on the boob". I was instructed to go pump so as to not drown the poor boy with milk on his first go. We timed this for when he was hungry to increase the rate of success. The point of the exercise isn't for him to eat but to just let him play around and get used to a real live binkie.
With all of the tubes and things preemies may get in their mouth, sometimes they have oral aversions and don't want anything in their mouths.
Wyatt suffers no such thing. He was eager to learn about breastfeeding and did really well. After about twenty minutes, he was tired and giving cues that he was done. So I held him to my chest and let him sleep and it was the first time he really felt like he was mine.
As a NICU parent to a micropreemie, you have to ask permission to do anything. You ask if it's okay to touch them, ask when to change their diaper. The nurse feeds them, the doctors make decisions about their care. You stand by, feel useless and very unlike a parent.
For me, as a new mom, this was a great day.


Cameron loves his binkie, but he's still trying to remember to breathe.

He also tires out pretty quickly sucking on his binkie. But he does root around some and occasionally he wakes up a little before it's time to eat. He's not far behind Wyatt and soon he'll be ready. The nurse said if he's wide awake around his feeding time to go ahead and try with him. We'll see how it goes. Today he cuddled with Daddy.

In the picture above, his eyelids are a little swollen from his eye exam. Another problem with being a preemie is ROP which can cause blindness.
Vessels in their eyes can over grow if they're oxygenated too much. The vessels pull on the retina and can cause the retina to detach. So once a week, they get an eye exam to watch the vessels closely. They can do laser surgery to zap a stray vessel if they need to. So far, their eyes look good.. Even when they go home, they may continue the eye exams.
The exam is no fun. I haven't watched it. The nurses said it isn't something I'd want to see. They numb their eyes so it's not painful to them, but the tools they use to hold their eyes open are cringe worthy. So I take the advice and try not to be there during them.

So that's the latest on the Tiny Mighties. They're still showing us that superheros can come in little packages.