Sunday, January 12, 2014

This week has been a little rough for Grayson.  His pour lungs are so immature and still trying to develop and he got pneumonia, they put him on antibiotics and take x-rays daily. Today they said it was looking better so hopefully it clears up and his lungs get healthy.

He has been off and back on the ventilator three times now.  Today they took him off and he only lasted a few hours before they had to put him back on.  They don't seem to be worried about it though so that gives us comfort.

He has gained 5 ounces, he now weighs 1 lb 9 ounces.  His weight has fluctuated up and down everyday but a lot of that has to do with when they weigh him and what he is hooked up to at the time.  He is up to full feedings now (13 ml) and they are starting to fortify them by adding calories.  They also started giving him a multivitamin.  Hopefully this will help him put some fat on his skinny little frame.

So right now if we can get his little lungs to work on their own it will be a huge step for him.

Today we got to touch him a little bit, took his temperature and held his little hand and foot.  The nurse asked if we wanted to change his diaper but Darcie is still a little nervous to do that.  It was enough to be able to hold his little hand.






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What I Wish Everyone Knew

I wish everyone knew that this hurt never goes away. We still need support, and I still need to hear my son and daughters' name. Now, even more than before, I NEED to have their lives validated.

I wish everyone knew ....that even though my babies' deaths were the most painful experience of my life, I am grateful for the pain, and I would still choose to have them even knowing that it would end the same....and I would give anything to cuddle them in my arms again, if only for a brief moment.

I wish everyone knew... that my heart leaps with joy every time someone asks me about my babies.

I wish everyone knew that a baby's age or size at birth or death does not determine to how much of a person he or she was or how much they will be loved or missed.

I wish everyone knew that an early miscarriage and/or losing a tiny baby is just as difficult and painful as losing any other child.

I wish everyone knew how much I need to talk about mybabies, and how happy it makes me when someone asks about them.

I wish everyone knew the struggle that I go through everyday to answer the simplest questions, like: How many children do you have?

I wish everyone knew it is ok to talk about my loss.

I wish everyone knew that I think of my babies all the time.

I wish everyone knew that I have completely changed because of my experiences.

I wish everyone knew how much I love and miss my babies.

I wish everyone knew how much I need to talk about them and remember them.

I wish everyone knew what it felt like to hold them, still, perfect, breathtaking and have to leave them.

I wish everyone knew what it felt like to long for just 1 more second with their baby. Maybe then they could truly cherish all the billions of seconds they get with theirs.

I wish everyone knew that us mommies who lose our babies carry them with us everywhere we go...for the rest of our lives...and to say we are changed...is putting it rather lightly.

I wish everyone knew and appreciated what an absolute miracle each and every child is, from conception to birth, viable and enviable.

I wish everyone knew that even though I can smile and go to work and "function" like everyone else, I'm not like everyone else.

I wish everyone knew that even if you don't know what to say to me, saying nothing at all is more painful than you can imagine. Ignoring me and never speaking to me again because it makes you uncomfortable to be around me is worse than being uncomfortable or saying the wrong thing.