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!

Bug identification

Today, I walked into the NICU and spotted a sign on the door leading into the room where my boys currently reside. It had "STOP", all big and angry with something about it not being a room for people to simply walk through.

Not totally grasping what it meant, I made a joke to the front desk. "Signs on that door are kind of scary." I thought it was hilarious until the charge nurse, who is also one of the boys' primary nurses when she's not charging, spun around in her chair at the sound of my voice.
"Has the nurse practitioner or anybody called you," she asked.
Immediately my heart began pounding. "No?"
"Nobody has called you?"
My heart stopped and dropped into my stomach. "No."
She lifted from her chair and came around the desk. "Okay. Well, we need to talk," she said and began pulling me towards a parent conference room.

I had never been in the conference room. I didn't know they had one. We've gotten some pretty bad updates at the bedside before. Good gosh, what was I about to learn that was so bad that I had to be put into a little room to learn it?
My legs turned to lead. It was a conscious effort to put one foot in front of the other. Immediately all of the worst scenarios played out in my head. My throat went dry and my heart constricted.

The fear of the worst must have registered on my face. She pat me on the back. "Oh, it's okay! Everyone's okay! We got results back on Wyatt's pneumonia and it requires him to be in isolation. He's had a good day. The isolation stuff is scary looking and we need to go over some things. I'll let the nurse practitioner know you're here and she'll update you."
I felt myself take a breath. My weighted legs nearly turned to jello. Had nobody been watching, I would have collapsed to my knees and cried with relief. I was pretty close despite the audience I would have had.

They had taken cultures of what was in Wyatt's lungs and they finally had an answer to what his pneumonia is. It wasn't the best news but it wasn't the worst news.
Wyatt has Carbapenem-resistant Enterobacteriaceae (CRE). Kind of a nasty bug that's resistant to antibiotics. There are two types. One is worse than the other. Wyatt has the better one. Finally a little bit of luck, right?
This is a bacteria that exists on our skin, in our gut, and a normal healthy person can keep it in check. Since Wyatt is premature, he doesn't have the defenses to do so.

But since it's resistant to some fairly strong antibiotics, he's been placed in isolation to prevent it from spreading to other babies, including Cameron. With the cultures, they are able to test what antibiotics will work on it and he is currently on that antibiotic.
The nurses are impressed that he doesn't seem more sick. He's one tough little boy.
I didn't get any peepers today from him, but he's been stable and the little guy needs his rest.

Now, whenever we interact with him or touch any of his things, we have to wear gloves, a gown and a mask. If we're just looking, we don't need those things. This may be for a few weeks or this may be for the entire duration of his stay.

So they're in separate rooms for now, which makes me sad. They loved being with each other in the womb and I wonder if they miss each other. The staff is working with infection disease control to see how isolated Wyatt needs to be, if his brother can be in the same room with him. They were both moved out of Room 1 today which is the most critical care room. Now they're in the low birth weight center. It's more about the ability to isolate him than suggesting they're doing much better. However, it's a bit quieter there and the lights can come down a bit which will help lessen their stress.

As for Cameron, he's doing well. He's been nice and stable and even looked for me today. They are both eating as much as they can with a PICC line in.

That's really it for now so here are some pictures because pictures are always fun:


Wyatt
(the IV on his head infiltrated which is what the bruise is. That will go away on its own)

Cameron
(some tummy time with the Cammy-cam)



Can we get a tube over here?

Cameron is intubated. He didn't take a step backward or anything. His skin started to show signs that the mask put too much pressure on him. And using the prongs was difficult because of his nose. So they couldn't give him the respiratory support he needed with the CPAP.
I spent hours today watching his saturation rates go up and down. Finally I told the nurse that I would feel better if he were intubated. He could get the oxygen he needed, his nose could heal, and he could get some rest.
Hours later, I checked back with his nurse and found they had intubated him which has cleared up his episodes. He had just finished story time (I got some voice recorders and read some Dr. Seuss so the nurses could play it for them) and is all tucked in for the night. He fell asleep to my voice reading One Fish, Two Fish.

We talked to plastic surgery today. Repairing his nose would need to wait until he's 4-6 months old. His nose may try and repair itself since he's so young but it wouldn't look the same as it did before. And any repair could take multiple surgeries. The surgeon was confident that it could be repaired though. I had turned to google and got scared while reading stories from people saying it wasn't fixable. The plan simply depends on how it heals.

Wyatt is doing well. He got a PICC line last night for his antibiotics and has been pretty stable. He was sleepy today so no peepers.

Rest up my sweet boys so you can keep fighting. Mommy and Daddy are so proud of you.

Tiny update: both boys had a great night and got lots of rest!