Thursday, May 24, 2012

The Small Things in Life

Will I EVER stop being afraid to be excited at the end of the day?  Will I ever stop waiting for the other shoe to drop?  Will I ever be able to go to bed without thinking that the phone will ring in the middle of the night to tell me we are back in

THE PIT OF DESPAIR???

I hate that it has to be that way now, but so it goes in the NICU.

Today was a fantastic day.  The P-nut is OFF HIS DOPAMINE and his blood pressure is maintaining quite nicely.  He is off of the preventative dialysis from the circuit change.  He's off his paralytic, and there is no sign of bleeding.  Instead, there is movement, and breathing efforts, and the sweetest attempts at opening his eyes!  His eyelids are still a bit too puffy to get them all the way open, but he is trying so hard. They started him on Lasix, which is a diuretic, to get some fluid off.  He's peeing up a storm, so it will hopefully work soon.  I can't wait to see his little eyeballs!

We had THE SWEETEST NURSE today.  I am so used to sitting in my chair trying very hard not to knock into anything.  Every so often, I will go to Parker's bed, rub his arms and legs and head, talk to him, and then go back to my chair.  The ECMO machine takes up a huge amount of space, and the whole setup is so very delicate, I am terrified of stepping on something.  I am terrified of knocking his cannulae (the big tubes going into his neck) out of whack.  I am scared of my baby.

Sarah, today's nurse, asked if I wanted to wipe his eyes and mouth.  I think I probably looked completely taken aback, and the first thing out of my mouth was "Can I do that???"  You'd think she had asked if I would like to fly to the moon.  She told me that OF COURSE I could wipe his eyes and mouth and that it's something he very much enjoys.  I saddled up and grabbed hold of that little wipe and went to town.  
(By "went to town," I mean "placed approximately 4 featherlight touches on his eyes and 1 sort-of swipe of his mouth, all the while holding my breath and being petrified of ringing sirens and NICU police descending upon me)  She told me that he particularly likes to have his lips moistened, and that he's trying to lick the wipe.  Sure enough, he did!  As I wiped his eyes, he tried so very hard to open them to see me.
  
I was completely beside myself.  Fell all to pieces but tried to maintain some dignity and also tried not to blow snot rockets on the child.  Amazing how something so very small, so insignificant when I did it to Jeremiah, could turn my whole world around.  Today was the first day, **do I dare say this out loud???** that I felt like he might make it after all.

When Mike joined me (he and Jeremiah had been to the park for the afternoon), he got a turn and also got to do some baby stretches to work some fluid through.  I put on some eye cream for him.

 (um, sorry for the sideways)

All in all, it was a tremendous day.  We left today feeling like parents, for the first time in a week. We were walking on air, especially considering how far we've come in 2 days.  It's is *almost* laughable what a difference a matter of hours makes to us now.  That being said, it plays right back into my fears I mentioned at the top-- we could go from blissful peace to Tuesday all over again at the drop of a hat.

It's not worth living in fear.  I am choosing instead to go to bed happy with the day we had today, and riding high on the fact that I got to help take care of my baby boy!

Pastor Ron came by again today-- he heard about how wretchedly bad things had gone since his last visit, and he wanted to check on us. I was most pleased to report to him that we were in a far better place.  He prayed for Parker again, and in doing so asked God to surround baby Parker and help him feel how loved he is.  We can't hold him and snuggle him, but I know without a doubt there are hands holding him in our place.  Mike and I are not the only ones taking tremendous pride in Parker's steps forward. It is the greatest comfort to know that we can say to Parker:

"The Lord your God is with you,
    he is mighty to save.
He will take great delight in you,
    he will quiet you with his love,
    he will rejoice over you with singing.”

-Zephaniah 3:17
  

17 comments:

  1. So grateful today has brought better news, a little light in the darkness and the ability for you to bring comfort to your son! I am a pediatric oncology ICU nurse. All you need do is ask the nurses what you can do for Parker. You are his mama and no matter how sick and fragile he is, he needs and most importantly know who you are. After all he knows your heart from the inside!

    God bless Parker!

    ReplyDelete
  2. Glad to hear you had an awesome nurse today! Continue to have them show you how you can help with his cares! One of my favorite parts of being a NICU nurse is when I can help parents learn to take care of their baby, machines and all!

    ReplyDelete
  3. God be with you and your sweet family! I only hope things will continue to go so well for Baby Parker! <3

    ReplyDelete
  4. Amen for this day!

    ReplyDelete
  5. Dear Abby,
    Your gift with words has taken me right back to Samuel's beginnings. I remember doing his mouth care, even changing his diaper, like it was a magical first experience rather than my fourth baby. I remember the day he first opened his eyes - he was one week old - and gazed at me. I remember the sweetest nurses, and the fear and vulnerability.

    I want to tell you that it is a beautiful thing that you chose to go to bed happy. Some day, you will be less afraid of the other shoe dropping. I get to have days like that now! But if there is anything that Samuel taught me, it is that there is only this moment and so I might as well live in it fully.

    Thank you for sharing your sweet boy with me, with so many of us. You can do this thing, mama, and I believe in my CDH-knowing and deeply faithful self, Parker will come home.

    Corinne

    ReplyDelete
  6. Love the pictures and love that it was such a great day with many more to come.

    ReplyDelete
  7. I so love reading your blogs. You have such a way of using humor to express your fears and angst. And I know that reading your humor helps comfort those around you that love you and are worried for you. Parker is a fighter and he has got a mommy and daddy there in his corner to coach him along not to mention a whole crowd standing by his ring. And someday, when he is older, you can share with him your blogs, the stories, the support and it will give him a personalized perspective on how precious life is. He will be a better person in more ways than one ;).

    ReplyDelete
  8. Yay for a good day!!!!! Here's to another one today!!!! That is one of the greatest gifts of CDH (yes, believe it or not - there are gifts) - you will celebrate every little thing. I love what Corinne said!!! Amen!
    Hugs,
    Jennifer
    Mom to Dakota 12-25-2008
    RCDH survivor

    ReplyDelete
  9. Abby, I've been keeping up on your blog and am so very happy that you guys had such a wonderful day! My best friend has a CDH baby, and I remember how sweet his good days were! I have kept your family in my prayers, and will continue to pray for improvement! God Bless you all, Megan

    ReplyDelete
  10. Thank you so much for keeping us updated. This blog helps alot of us who are delivering later this summer.

    Parker is in my prayers daily.

    ReplyDelete
  11. ParkEd, know that we love, think of and pray for you.
    Know, too, Mother Ab and Father Mike,
    that such good news that we all like,
    with God in control, has every reason to stay for you.
    Opa 2012-05-25th Fri-13:40

    ReplyDelete
  12. ParkEd, know that we love, think of and pray for you.
    Know, too, Mother Ab and Father Mike,
    that such good news that we all like,
    with God in control, has every reason to stay for you.
    Opa 2012-05-25th Fri-13:40

    ReplyDelete
  13. I have seriously got to stop reading your blog posts while I'm at work. I love the image of God's hands holding Parker even though you can't yet. And how precious that you got to do some real live parent-y stuff for your sweet baby. I love it.
    You guys are doing great. Parker is doing great. And he's going to come home.

    ReplyDelete
  14. My prayer is that Parker realizes that he is surrounded by so much special love today and he can fight even harder to let his mommy go to bed HAPPY! God bless ALL of you!

    ReplyDelete
  15. Your post made me laugh and cry. I remember the shock and joy of being able to care for Ramsey in the simplest ways. These babies, and the entire NICU experience can remind and teach us what really matters in life.

    ReplyDelete
  16. Hi there-
    I have stumbled onto your blog before Parker was born. I don't know you personally, but I just wanted to let you know that there are complete strangers out here wrapping you in prayer. I will continue to check on you all but I just wanted you to know that. Bless you all!!
    Lori

    ReplyDelete
  17. I'm crying yet smiling so big! This NICU parent club is one noone ever wants to join but will forever change your perspective. It is truly the simpliest things that have the most profound impact. I'm so proud of you three & I'm in love with Parker. Ohhh to see those sweet eyeballs...what an incredible moment! Rejoice in every moment. Stay strong!
    Dawn

    ReplyDelete