I didn’t go see Levi today. I have so much to do at home and I assumed with the fentanyl he would be out for a while like last time.
I just called to check on him.
The nurse said he has been waking up for “cares” (when they weigh him and check his blood pressure, temp, change his diaper etc.) and since they upped his fentanyl he seems to be comfortable.
She also said he had been “desat-ing” (when his heart rate, blood pressure and/or oxygen levels drop into dangerous levels-making all these dinging little alarms go off) all day and they couldn’t figure out why.
He then managed to push out his breathing tube. When they went to put it back in they discovered it was plugged (I asked “By what?!” and she said, “Like… mucus”) so he wasn’t receiving any of the breathing help they’d been giving him all day. Once they replaced the tube he stopped “desat-ing”.
She said that he’s also gained a significant amount of weight but it was the first weighing since the surgery and even though he’s weighed daily, they look at it on a weekly basis so for now they are not concerned. I asked what would be the concern with too much weight gain and she said that if he’s retaining too much fluid it can be really hard on his heart and lungs.
I’m mad. I’m mad at myself for not calling sooner to check on him but I truly believed he was totally out like last time. Last time it took him at least a full day before they started pulling back the drugs and expecting him to start waking up. This time he’s awake even though they upped the drugs.
I’m mad they didn’t call me when he was first waking up at least but really mad they didn’t call me when he was desat-ing all day and they didn’t know why.
I’ve been there long enough to know the babies do that a lot and they don’t ever call the parents. But those are teeny tiny premie babies whose sats all go up and down for a while until they get bigger. My son has had a hell of a journey and has, until now very rarely had that problem. I’m not saying it’s not terrifying when any baby’s sats go down-it is! I just feel like if it had been our primary nurse today, who LOVES Levi and who I think has become a good friend of mine, she would have called.
I just wish they had called or I had called or someone had called someone!
But I did get to spend one beautiful summer day with Jayden. We played in his little blow up pool in the backyard and went out to dinner with Josh and to the park to splash in the fountains after.
Sometimes when I’m not in the hospital it literally feels like I have stepped into another life…in some alternate universe. My heart always feels like a piece of it is still Downtown, waiting to come home. But the Sun seems brighter than it should be and the air is warm and uplifting. The sky is astounding, the sunsets- breath taking and the stars- unendingly fascinating. Even the rainy days seem peaceful and cleansing.
For moments at a time it feels like life is perfect and the world is exactly as it should be.
Jayden fills my heart with Joy and my husband still makes me laugh daily.
And then I go back to the hospital.
I feel like I have to put on this heavy armor on my chest to protect my heart just so I can stay standing. I feel it’s weight baring down on my shoulders and straining my back. It’s not always unbearable or impossible but it is often difficult and crushing.
I feel like I’ve always lived in the hospital and the world outside has never even existed, it was just a passing wish or dream I’ve already begun to forget in my waking moments.
It is unreal how life can be so bright and so dark at the same time.
I do believe though, that this part of Levi’s story is nearing it’s end and he will be home soon enough. And then I can have my sunny-summer days and laughter-filled evenings WITH my baby boy Levi in my arms and my family finally together.