Sunday, February 02, 2014

Sorry to all those looking for updates. The good news is that there really wasn't a whole lot to update. Grayson is still doing good. He has been off the ventilator for a couple weeks now and they are trying to get him off the machine he is on now called a Nava.  It is still helping him breath a little, when he breathes in it gives him a little extra, and if he forgets to breath it will do it for him, but it is not down his throat just a large nasal cenula.  They want him to start breathing on his own with less support but he is a little stubborn and doesn't like doing things on his own.

He is also having elevated para thyroid levels that they are worried about.  Callie had the exact same thing happen and hers went away rather quickly.  His levels aren't turning around like hers did and they are attempting a treatment to help out.  This combined with his poor little lungs is not a good thing and they scared Darcie by telling her if it did not get better he wouldn't make it more than 5 months.  Scared her really bad.  I am not too worried, there are a lot of ifs to go through before we ever get to that stage and the doctors just wanted to inform us of their worries. In the NICU there are always lots of ifs and bad things that could happen.  I ignore all that and focus on today. Today he is doing great!  Garvin gave Grayson a blessing yesterday and I gave one to Darcie. That is his third blessing and every time he seems to do a little better. They tell us in the beginning it's two steps forward one step back.  Well we had a step backward, no big deal.  I had a talk with Grayson and told him to be strong like his big sister and not to wimp out.  He opened is eyes and looked at me, so I took that as "Ok Dad, I will be strong."

His nurse Karleen was very sweet, she told us that these doctors don't know about the miracles that we know of. They just look at the facts and have been very surprised many times.  They welcome the blessings even though they don't really understand them all they know is they have seen amazing things happen after a baby has been given one.  She kind of teared up when she was talking to us and it was very nice of her to help calm our nerves.

Grayson weighed in at 2 lbs 6 oz last night so he continues to gain weight.  If we can get his lungs healthy and this parathyroid issue under control so his bones can strengthen maybe we wont have any more steps backward. We appreciate all those praying on our behalf and fasting.  Also anytime his name is put on the prayer role it is greatly appreciated.

Darcie got to give him his first bath on Friday.  Unfortunately it was right after the doctors told her about their worries so she didn't get to enjoy it as much as she should have.  It was still a milestone for him and she did enjoy it.

I think that is all for now, enjoy the pictures.



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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.