Snow day, lazy day, but not without changes

I woke up to a blanket of white snow on the ground. 

No, scratch that.

I woke up to my alarm going off at 3am. It was time to pump. Though I don't have any newborns at home, I do have to keep the feeding schedule in preparation for when they do come home. So I have a hospital grade pump and a demanding newborn-like schedule with waking at night to feed the breast pump and I'll have this schedule until March or April, when they're likely to come home.

At about 3:30am, I looked out my bedroom window and had a brief spike of excitement seeing the snow covering the ground. It quickly abated though. I couldn't go and see my Tiny Mighties today. Since I was born and have lived in Texas all my life, I haven't learned how to drive in snow and I wasn't about to attempt the mountain climbs required to get to the hospital. The last time it snowed, my husband had to skate our shiny pretty car down from the hospital and we prayed for green lights. Today, it snowed and snowed and snowed. It never stopped. I've never seen so much and I decided I'll just take today off.

In the nearly 5 weeks they've been in the NICU, I've only missed one other day because I had a funny stomach thing and wasn't sure if I was getting sick. Turned out, I was fine. Their immune systems are so immature, I didn't want to chance getting them sick. 

It felt weird not having anywhere to go. I stayed in my jammies and started making some Christmas stockings for the boys. About the only way I can knit is with a loom and I've taken on a rather time consuming pattern. The yarn seemed to want to do nothing but tangle so most of my day was spent untangling yarn. I managed to get 15 rows of red and white stripes that will be the top of the stocking. One will be red, the other white, or so I plan. I'm really bad about starting these projects and not finishing them.

I placed multiple calls to the NICU to check up on the Tiny Mighties and they're doing their thing--soaring above all obstacles.

Cameron decided he was through with High Flow oxygen and is now on nasal cannula. After nasal cannula, he's free from needing oxygen. Due to the altitude where we live, they'll both likely go home on oxygen using this nasal cannula. 

The nurse said if he keeps it in place, he does fine. He's been managing to move around enough to knock it off his face. They're working out a way to make it stay put. 

But wow! He was born at 25 weeks and has beaten a baby born at 28 weeks to the nasal cannula. I'm telling you, these boys are a force of nature!

Wyatt decided he was through with the NIPPV and has gone down to CPAP. Then he decided to wean down to the point they're already talking about moving him to High Flow. It'll be a couple of days most likely. His nose looks great, no redness noted and the nurse has been placing a protective tape over his nose just to make sure what happened to Cameron doesn't happen to him. It's clear so they can see his skin though it. He can cry but since he's been on a ventilator for so long, his vocal cords are a little swollen. Apparently he's not as loud as Cameron is, but it sounds like he'll get there soon enough. I can't wait to hear his voice. Neither of us have ever heard him cry. 

When he was born, I remember them saying he was crying but I couldn't hear him.

So yeah. They're kicking butt in the NICU like the super heroes they are!

Standby-Patient not ventilated!

We have so much to be thankful for this year.
I'm a day late, almost two days late on this post. It's about eight thirty at night and Thanksgiving was yesterday. Our Thanksgiving feast was last weekend while the Tiny Mighties' grandparents were visiting.

We have great friends and family who have given us such wonderful support. They wonder where we get our strength from when they're the ones who help keep us strong.
We have wonderful neighbors who barely know us but treat us as if we've lived here twenty years whether they've met us already or not.
We have strangers who we've never met, will likely never meet, who have donated money to ease our financial burden.
We have each other. One's weakness is another one's strength. And while I like the pie filling, he likes the crust. Doesn't that work out perfectly?
We have two little boys who are giving it all they've got to be here and become big, fat healthy babies.
They're in a NICU who have amazing expertise and a staff that treats our boys like someone special to them.
We have a roof over our heads, food in our bellies, full hearts and two babies that are currently feeling good enough to fuss at us over their diaper changes.

The doctor had talked to us about wanting to get the Tiny Mighties off the ventilator as soon as possible. She felt it would be soon.
"Even Wyatt," we asked and she nodded.

We walked in today just as Cameron was giving the NICU team one heck of a stink eye. He'll close one eye and glare at you with the other as a warning.
Today, they took away one of his machines!

They had just pulled out his breathing tube and his lungs are doing so well, he skipped CPAP and went straight to what's called "high flow". His nose doesn't get the pressure like it did with CPAP. Breathing is completely up to him, which scares us to death due to his apnea spells. We stayed with him for hours to make sure he was okay. He was feeling well enough to throw temper tantrums over care time.
He likes to hold his breath when he gets mad and waking him up to change his diaper makes him angry. He loves his sleep! Once he holds his breath, his oxygen saturation drops, his heart rate slows, and he makes everyone worry. He does it on purpose. What a stinker.
Sorry, Superman, but you can't save the world with a wet and dirty diaper.

With his cares done, he was allowed to drift back into a peaceful sleep.

Mr. Wyatt had his last day of antibiotics today. I'm so proud of him. His ventilator settings are really low. The rattle in his lungs is still there, but so much better. They think his secretions will resolve once his breathing tube is out.
We had snuggles today. He never did sleep during his snuggles. He was awake the entire time, but it was a good "awake". He was calm and quiet. He'd look around the room, look at his dad sitting next to him and simply enjoyed his time.
Did you know, despite being born so early, he can nearly lift and turn his head? That's why I'm holding his head because if he did that, he could pull his breathing tube out. What a strong little man!

At one point, he finally stretched his arm up like he does when he's ready to go to sleep.

It's another good day. This is the longest stretch of good days we've had and I hope it keeps going.

Way to go boys! We love you lots XOXOXO

One month

My two warriors are one month old today.
For one month, they have made me laugh, made me cry, have brought me to my knees, and have shown me incredible strength.

The little guys have had several good days in a row. Wyatt is off of the nitric. Getting him off of nitric has been incredibly difficult and it had been because of his pneumonia. We've tried to get him off of it so many times that it's become a joke between us and the nurses.
First, we only whisper about weaning him from the nitric just so he doesn't find out what we're doing. And on his goals for the day, we joked about asking him to consider coming off the nitric.
Well, today he's off (but don't tell him yet!).  We'll see how he does.
The antibiotics he's on for the pneumonia has given the poor sweet dear some awful diarrhea which has given him a diaper rash. We've gone through three different creams to try for it before finally finding one that seems to be helping.
Next week, Wyatt will get another head ultrasound to follow up on his brain bleed. He has a grade 1 bleed which is the smallest and usually resolves on its own. It has the smallest risk of causing any long term problems. Hopefully it has resolved.

Cameron has a really nice set of lungs. No really, we've seen the x-ray of them. Now if he would only remember to breathe...
For some reason, Cameron is having a harder time remembering to breathe than Wyatt. The doctor says it's either because of him being premature or because he has some brain inflammation from meningitis, which they are treating. They tried to do a lumbar puncture on him to find out, just as precaution since he has a blood infection. But it was unsuccessful and rather than try a third time, they went ahead and treated him as if he has it. She said it wouldn't be an "active" meningitis.
Anyway, he could probably move to a high flow cannula if he'd just remember to breathe.

So, lets celebrate their one month birthday.
What do micropremie's do for their one month birthday?

Well, you either dress up as a burrito with a binkie in your mouth, like Cameron

Or you air out your fanny, of course, like Wyatt

One month. I can't believe it!

Tootsies in the air

Today, Wyatt is sleeping with his butt in the air. This isn't something he decided on his own. It's to help his diaper rash. The antibiotics he's on are some big guns and they've been giving him diarrhea despite all the probiotics they've been giving him.
But my little Batman is doing well, remaining stable, and making plans to save Gotham from evil.

Cameron is also doing well. They weaned his vent a little and he's still in a happy place. His PICC line is in place to give him the antibiotics he needs. His cultures grew out a gram negative rod, which could be CRE. Since Wyatt has CRE, they're treating Cameron as if he has the same thing. So far, Cameron hasn't shown any signs of being "sick" so if he does have an infection, it's been caught very, very early.

Both boys are tolerating the fortified milk really well. The NICU has a milk lab. They take the milk I pump and add vitamins and calories to it.

Something the doctor told us yesterday is that how well premies tolerate food is a decent indicator of their prognosis. With my boys being able to take their meals, she said that's a very good sign. *crosses fingers*
I want so dearly to hang on to those words, that they can tolerate meals and gain weight gives them a good prognosis. But with this roller coaster ride, I can't help but feel like I'm waiting for the other shoe to drop. Which also feels wrong to do because I want to stay positive. We've had several good days. Where is the top of this hill and how far is the fall? Or have they reached a point in this ride where we can expect a few small bumps but it's smoothed out quite a bit?
Something only the future knows. I want so badly for them to be okay.

Fight on, little boys. Fight on!

Four weeks later

For most, your child is born, they cry as a sign of healthy lungs and then you get to hold them.
For parents of a premie, especially a micropremie like Wyatt and Cameron, the babies are whisked away and placed into isolettes and all you can do is sit and watch them through the clear plastic. They're too fragile to touch. You must wait until they are stable and strong enough to hold.
For parents of a premie, this can be weeks, months even.  Every day, every hour, you watch as they get poked, prodded, and you want so badly to pick them up and cuddle them close so they feel love and not just the sting of another needle or tape ripping from their delicate skin.

Today, nearly four weeks after he was born, the nurse handed Wyatt to me. We carefully arranged all of the lines, his breathing tube, and his feeding tube. He splayed his hand against my chest, snuggled in and drifted off to sleep. I could smell his sweet scent and feel his soft hair tickle my chin. I could hear the rattle in his chest as he breathed from his pneumonia, but I finally got to hold my little boy.

Weeks ago, before I'd started this blog, I got to hold Cameron. And he's enjoyed numerous, what they call "skin-to-skin" sessions. Wyatt had gotten so sick and hooked to machines that had made skin-to-skin impossible. Now he's off those machines and has been stable the last several days. It shows just how far he's come.

So now I've held both my baby boys and I couldn't be happier.

Bringing the awesome

I've seen a lot of chest x-rays. The one I saw today belonged to Wyatt and looked pretty dang good. It looks like he's kicking this pneumonia to the curb. My little Batman is winning this fight!
He's eating well, his labs look good, he's still off The Jet, he showed us his peepers. I mean, can we ask anything else from the little guy?
He's also over 2 lbs. Only by half an ounce, but he's held his over 2 lb status for a few days now. Way to go Wyatt!

Cameron is also doing well. He's actually outgrown his vent tube so I'm sure they'll be switching that out soon. His old PICC line had grown a germ which they believe is contaminant but they have to be sure it's not a blood infection. Since this is the second time, they're treating him as though he does have an infection.
They needed to do a lumbar puncture to make sure he doesn't have meningitis. They don't think he does, but they have to make sure. Unfortunately, after two tries they weren't able to get a sample. My poor guy! But he handled it like Superman would. So they will treat him as though he has it to make sure he stays healthy.
He'll get a new PICC line. More poking, I'm afraid. One day he'll get all the hugs and cuddles he could ever want without any needles.

Today we had some fun. We played with binkies. We put a drop of milk on the binkie and let them try that. Wyatt seemed rather pleased. Cameron wanted to sleep (so much like his mom!). But both of them sucked on their binkies and had a good time.

Hang in there my tiny mighties! You're doing so good!


Wyatt:

A special treat, Mr. Wyatt looking happy about the world:
















Cameron (having a really good sleep):

Wyatt and Cameron meet their grandparents!

Today, the Tiny But Mighty met their grandma and grandpa. Wyatt and Cameron showed them their new room, how they make their monitors beep at each other, and how good they are at making poopie diapers.

Wyatt forced the issue of getting himself out of "Room 1". Room 1 is a big open room with lots of babies and lots of people walking through. Since Wyatt needs isolation due to his CRE, they moved him to "Room 2" which has a bunch of smaller rooms with doors that can close him off from anyone else.
Luckily, the bug is not airborne and so his brother is allowed to come with him. They have a room that's large and can accommodate the both of them and their nurses. So now they're next to each other instead of across the room from each other so it's easier for us to talk to them both.
Wyatt got himself off The Jet today. His lung secretions have improved from "creamed corn" to just cloudy so the antibiotics are working. I can't remember if I updated that he'd gone back on The Jet, but it was expected as his pneumonia began to break up. Kind of like when you get a chest cold. You have a dry cough but then as you get better, your cough sounds wet and nasty as you hack things up. Wyatt is similar only he can't cough.
His labs look great and he's doing great. If he remains stable, we may finally, FINALLY get to hold him this weekend!

Cameron, the poor guy, has to get a lumbar puncture. This is the second time his PICC line grew out a germ so, while they think it may be a contaminate, they've realized these guys like to push the odds and so they're making sure Cameron is okay. I hate, hate, hate that he has to get a lumbar puncture. I quizzed the nurse practitioner pretty good about the whys and what-ifs. I'm tired of my babies getting poked, I guess. But it's all to make sure they can grow into healthy little boys.

So everyone is doing good. Thank you for your continued thoughts and prayers. It means so much to us. These little warriors use them for fuel!