Saturday, February 15, 2014

I'm ready to get off this roller coaster, it's making me sick.

Things have not been good since our last update.  Grasyon was doing good off the ventilator and then one night his stats dropped and they couldn't get him to recover so they had to re-intubate him.  It was  really hard for Darcie to see him take such a step backward. He seemed to be doing okay and we thought it was just that he got sick, they were giving him antibiotics and watching him closely so we thought everything was ok.

They decided to do an echocardiogram because they were seeing so much fluid in his lungs they thought he might be having trouble with his heart.  They found what is called Arterial Septal Defect (ASD) http://m.kidshealth.org/parent/medical/heart/asd.html Feel free to visit the link for more information.  It is basically a hole in the heart between the two upper chambers of the heart.  When the baby is in the womb it is open but is supposed to close when the baby is born.  Grayson's is still open and they weren't able to see it before he got sick.  Darcie feels like the reason he got sick is so that they could find this problem and get it fixed. So we were aware of this problem but it wasn't something they were worried about at the time.  They can usually go untreated until they are older and more stable.

On Wednesday night after Darcie left the hospital and got home for the day and I was still at work the Nurse Practitioner called and told Darcie he had taken a bad turn and they couldn't get his gases to level out, he was going downhill fast.  When we got there the doctor told us she wasn't sure if he was going to last the night.  They were able to finally get everything lined out after switching back and forth between the different ventilators.  The doctor decided to call and talk to Primary Children's to see if the heart defect needed to be fixed and if that was even a possibility with him so small and sick.  We sat around all day on Thursday waiting for the doctors to call from Primary Children's and never heard anything back.  Friday Grayson's doctor called back and was able to discuss the situation.  Since he was stablized and doing good they decided to wait and transport him on Monday. 

So Monday they will load him in an ambulance take him to the airport and fly him in an air ambulance to salt lake.  Darcie will be able to fly with him and I will take the car down.  My parents will also be coming down so that I can leave the car for Darcie.  When Callie was in the NICU at University of Utah Darcie was able to stay accross the street in a friend of the families moms house.  Luckily she is going to be able to stay there again so it takes a lot of stress off and saves us a lot of money.

Once Grayson gets down there they will re evaluate everything to make sure that they agree with the doctors in Idaho Falls.  So we really aren't going to know about surgery possibilities until Tuesday or Wednesday if I were to guess.  Hopefully it doesn't take that long to get information at least. 

The bad news is that most of the time they don't backtrack with his care, meaning he will be at Primary Children's for the duration of his NICU experience and wont transfer him back to Idaho.  It isn't unheard of but unlikely that insurance would sign off on it.  Part of me thinks that maybe it will be easier on Darcie.  She wont have to try and juggle her time so much, she can stay there with Grayson,  and Callie and I will visit on the weekends. 

Darcie's sister has been staying with us and isn't working at the time.  Probably doesn't feel like a blessing to Taylor but for us to have her stay and help with getting Callie off to school and there when she comes home so that I can work and not have to shuffle Callie around is a huge blessing to us.  We can't begin to express how grateful we are for her help.  We will have to do something big for her when this is all over.  Sorry don't have any new pictures, I will take some pictures of his transport and try to post an update after everything settles down next week.  Thanks to all who have shown there care and especially those who have helped us out in different ways, every little bit helps. 

1 comment:

leslie mae said...

So many prayers for you tomorrow! Thank you for updating us all.

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.