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Today the Tiny But Mighty would be 28 weeks gestation and are almost three weeks old. A lot has happened in those three weeks, many ups and downs, but they're fighting like warriors and Nick and I are so proud of them.

Wyatt is currently on a ventilator. Just a few days ago, he was taken off of a machine called The Jet. As best as I understand it, it oscillates puffs of air to keep his lungs open. He's been taken off of it before then needed it again, so when they took him off this time, I noticed The Jet was still on his rack of life support. Today when I came in, it had been removed which says something about their confidence in him.
He is fighting pneumonia however. He had just gotten over some pulmonary hypertension issues only to get pneumonia which brought back a little bit of his pulmonary hypertension. His oxygen needs are low. The nitric oxide they use to treat the pulmonary hypertension is low as well, so he's doing good all things considered. He's on a 10 day course of antibiotics, possibly 14 days. He's had two 7 day courses of antibiotics and always two days after, he tanks. So this has been a stubborn thing that they're hoping just needs a longer course of medication. The poor guy had all of his IVs removed and was taking all his medications by mouth (which actually means through his feeding tube), but for the antibiotics, he needs a PICC line. This will be his second and I hate that he has to get poked so much, but it's what he needs to get better. His electrolytes looked great as well as his blood gas so they were going to wean him off of oxygen a little bit.
We can determine how good he feels by how much he looks around. When he's feeling good, he's very responsive to my voice and tries to find me. It makes my heart go pitter-pat when he does that and today he was looking for me so I know he's feeling better.
A few days ago was a different story and it was breaking my heart. I'm so happy he's back to using his sweet little peepers again.

Cameron has been doing well. His tummy has been having a hard time waking up so they've had to give him my milk over the course of an hour for him to tolerate it. But tonight, they're going up on his feeds because he's doing so well with it. They're also fortifying it (2 additional calories!) to give him a boost as he's a little behind on his weight gain. Depending on procedures and how they're doing, sometimes both have had to have feeds withheld. Since Cameron was slow to come around with feedings, he's behind.
He's also been off the ventilator for a while and is on CPAP. But we've had a setback. For reasons not clear to us yet, the CPAP prongs rubbed his nose which created a wound which then turned black. Long story short, the piece of his nose that separates it into two nostrils died and his now gone. He looks like he has one large nostril.
We are devastated. Our handsome little boy. I came home and was just about inconsolable for about 24 hours. We had prepared ourselves for health problems, but not disfigurement.
Plastic surgery has been consulted on this. Though I haven't talked to them (they're supposed to call me soon), it sounds as though he still has two nostrils and some structure is still there. The wound is healing well and not progressing. The NICU changed his CPAP to the CPAP mask so his nose can heal.
The issue with the mask is that it has to put pressure on his face which can cause his fragile skin to break down. They've got some foam and so far his skin is handling it. If his skin starts to break down, they have to intubate him. The problem with this is that the ventilator damages their lungs, can give them chronic pulmonary disease and Wyatt already shows signs of that.
The nose thing is cosmetic and would be something to fix when he's older.

I think it can be fixed.
I hope it can be.
I have a lot of questions for plastic surgery, needless to say.

Healthwise however, he's doing really well. We get to hold him, though keeping his mask sealed while doing so is proving to be a challenge. But, he can get his skin-to-skin snuggles once a day most days.
We can't wait for Wyatt to improve to the point of us being able to hold him.

And that's the difference for these very early babies. People often think they're just like full term babies, only miniaturized. But they're not.
You can't lift their bum too high while changing diapers because they can't deal with the blood pressure change.
You can't touch and talk to them as much as you want as the stimulation is too much.
You can't stroke their face to console them. If you can do skin-to-skin holding, you can't rock them, you can't pat or stroke their back. It's too much.
You can occasionally talk quietly to them. You can occasionally place your hands over their legs or body, but stay real still to simulate the womb or you'll upset them. You can change their diaper and take their temperature at 8am, 2pm, 2am, or 8pm. But that's really all the interaction we can get with them.
I want to rock them, cuddle them, kiss their sweet face, and tell them over and over how much I love them. But right now, it's not good for them.

When we visit, we spend hours just sitting and staring at them in their isolettes. We watch them sleep, watch them twitch, trying to will their health to improve. We judge their coloring, the shape of their belly. Is it bad? Is it good?
Is he comfortable? Is he okay? Will he be okay? When will they be stable enough to move out of the most critical care room?
For hours we watch their heart rate and their oxygen saturation go up and go down. We spend hours listening to alarms go off because their saturation and/or heart rate dropped too low and we watch the nurses revive them. Those alarms make our own hearts stop. We hold our breath each time. But this is all normal premie stuff.
You're constantly attached to your phone. Every noise it makes, every hour of every day...is it the NICU with bad news?
The stress is an unrelenting pressure in our chests. It tests our stamina, our sanity. But we must stay strong for our boys.

They rarely have a good day at the same time. We're almost always worried to the point of nausea about one of them. But they're fighting and doing everything we ask of them. Such tiny but mighty little boys. We're so proud of them.

Wyatt

I got to hold Wyatt for a few moments as they changed out his isolette.


Cameron