Saturday, June 2, 2012

"Praise over Glaze!"

My friend Tiffany coined that phrase, and I think it is most appropos because Parker is OFFICIALLY REPAIRED! *happy dance happy dance (add shoulder shimmy from dear friend Ali)*

Yesterday was one of the longest, most exhausting days of my life... but at the same time, it was absolutely chock full from start to finish of blessings.

Mike and I got the "official" call Thursday night telling us that surgery was booked for lunchtime Friday.  (I was secretly pleased by that news as it gave us some wiggle room in the morning to get ourselves and Jeremiah squared away.  Mornings are not pretty around here.)  We got up, got dressed, and dropped JB off at Naner's house (my sister) to spend the day.  He decided he needed to take his fireman hat, and he sent Parker some donut love.

Mike and I stopped and got some donut love.  It's funny, with the hundreds of donut pictures we have (literally... hundreds!  Still boggles the mind!), there weren't any of Parker's parents.  We solved that problem right quick. 

I think my favorite part of this is  how many comments I got about my donut being bigger than Mike's.  I could say it was just the perspective from the camera but I spent most of my day saying, "My donut is bigger than your donut" and laughing like a 9 year old.  My other favorite donut related comment from yesterday was a caption to a donut picture:

"For Parker on his hernia repair surgery day.
And because CDH babies are awesome.
And because CDH is stupid.
And because holes belong in donuts and NOT in Babies' diaphragms."
--Ryan Yaun
(I think this should be a bumper sticker or a T-shirt or both)

We went back to visit with Parker pre-op... he was knocked out, but we were happy to spend a couple of hours with him before he got taken back.  Here is his official Two Week Birthday Picture with Mickey Mouse (someday I will put up the progression of his weekly Mickey photos). 

See what I mean about the difference between happy baby sleep and drugged baby sleep?  Still, we were grateful to learn that he had a restful night before surgery, and that his ventilator and medicines had been continuing to come down (though they will likely go up for a while post-surgery).

We got the call that they were ready for him, and it was time to load him up into the transport isolette.  
Y'all.
It was the most nervewracking 10 minutes of my life.  (I don't imagine it is any picnic for the nurses, either.)  Parker has been in that bed since he was 3 hours old.  Minus his ride from Northside to Egleston, he has never been on a field trip.  Loading him up with his 25 wires and IVs was quite a process.  By the time we got rolling, we looked like this:


Scary, much?  That huge tower to the left are all of his medicine pumps.  Yep- he's on THAT MUCH MEDICINE.  On his actual cart are the monitors and the travel ventilator.  Parker is crammed into that isolette... he's the Goliath of the NICU as it is and this tiny plastic box was a little cramped what with him being swollen to twice his size and having so many attachments.  Still, it served its purpose quite nicely and we took of to the OR through the back secret hallways of the hospital.

It would not be a day with Parker if we didn't have some sort of drama, which came as we loaded up onto the elevator.  There's a pretty good gap between the floor and the bottom of the elevator, and that giant tower of med pumps got caught in the gap.  It very nearly toppled over, which would have been complete disaster.  Thankfully, our nurse was able to save it and we carried on without further incident.  We checked into the OR and they let us kiss him goodbye before they took him back.  I did okay until I saw the Parker Mobile disappear through the proverbial double doors and then I ALMOST lost it.

I don't know that there's anything harder than letting your child go through double doors of any sort and watching them swing closed, separating you from them.  It happens at preschool when you are trapped in the Mommy Mobile during carpool with the honking minivans and you take just a moment to pray, "Please, Lord, let my baby be okay without me!"  Double doors to surgery are a whole new level.

We got shown to the waiting room, where the nicest surprise ever had been left for us.  Mary Joy, a CDH grandmommy who lives near Atlanta, had dropped a gift off for us that morning.  I have never met Mary Joy (still haven't, even after this!).  We are Facebook friends through the CDH community.  The fact that she took time to drop by the hospital and leave us a gift to encourage us, "strangers", is just amazing.  She handmade at least 10 blankets for Parker, and enclosed a "hope" Willow Tree angel.



 There was also a letter explaining how her journey  with her grandson's CDH had impacted her life, how God had carried her and her family through, and how she now spreads "hope" to other families.  I just boohooed reading about it and thinking of how kind she is.  I am most definitely going to try to be like her when I grow up!!

We waited, and got some occasional updates.  After about 2 hours, Dr. Parker came out.  His first statement was, "He loved it!"  Parker did great!  There was very little diaphragm on the left side, and it was obvious pretty quick that laparoscopic surgery was not going to do the job.  Dr. Parker put in a double patch-- part of it is GoreTex, which will keep everything down for now.  There is also a larger mesh panel, which will encourage scar tissue to grow in around the plastic patch.  The plastic will not grow with him (obviously), and the mesh panel/scar tissue should help unite the whole shebang as he grows and keep him from reherniating.  We will be visiting Dr. Parker every 3 months for the first couple of years just to keep an eye on things and make sure there are no signs of pulling away.  He will also be keeping an eye on the right lung mystery, and is ready to operate on that if it ever starts to be a problem.  Dr. Parker was pleased with what he found and pleased that everything fit back where it was supposed to go.  If he's happy, we're happy.

We waited for the call that it was okay to go back to the NICU after Parker was moved back into his bed.  I was quite afraid of what we would find, incision wise.  I have seen pictures of some big scary gashes across tiny little chests, and I was nervous.  Imagine my surprise when we saw this:


It is SO not what I was fearing.  No staples or Frankenbaby.  It will get worse for a few days, as inflammation sets in, but I think it looks great to have been such massive surgery.  We are going to tell him to tell the other kids that he was involved in a knife fight in the NICU.  Or a shark attack.  Whatevs.  He was resting comfortably, so we read him a story and headed out.  Longest day ever.


We stopped at Doc Chey's in Decatur and celebrated with my first Post-Baby Beverage.  Can't think of a better day to celebrate....  Happy Surgery Day!  Happy Two Week Birthday, Parker!  Happy Donut Day!  (it was also the birthday of FIVE friends and family)  We came home, fetched a stinky sweaty and happy Jeremiah, and all proceeded to sleep for 12 hours.

(twelve hours of sleep is a beautiful and sacred thing. Twelve hours without pumping is NOT, but it was worth it just this once!)

We were told to expect the first few days after surgery to be pretty bad for Parker, as they would be for anyone.  Hopefully, sooner than later he can start his LOOOOOOOONG road to recovery-- learning how to breathe, how to eat, and how not to be hooked on drugs.  With this behind us, though, we feel like we have taken a pretty giant step!

Thank you so much for the thoughts and prayers and donuts yesterday. I had several people ask how we were holding up, and the answer was "Surprisingly better than anticipated."  The whole journey thus far has been that way-- without fully understanding how, Mike and I have made it this far and feel pretty good.  We are tired, which is a minor understatement, and we have our moments of sheer terror, but if you look at the greater whole, we are okay.  More than okay, actually.  We are strengthened and renewed every morning, ready to take on whatever is coming that day and ready to juggle the 800 balls we have in the air.  Before Parker was born, I chose "his verse" that I felt would serve him well throughout his life (Jeremiah's verse is Jeremiah 29:11).  Strangely enough, it has served me just as well during the last two weeks.

So do not fear, for I am with you;
    do not be dismayed, for I am your God.
I will strengthen you and help you;
    I will uphold you with my righteous right hand. 
--Isaiah 41:10 


Thank you, Lord, for your grace and mercy.  Nothing is impossible for You!

13 comments:

  1. Sounds like you have the peace that passes all understanding! Prayers for a smooth recovery.

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  2. Abby,You do not know me but I was a friend of your uncle Greg's I held you when you was born. watched you and your sister grow.This made me laugh and cry at the same time. For as long as I have known the Jones family they all have been a strong and loving family. I am friends with your Grandmother on facebook she let me know this was your baby. I will not say I am sorry because this is going to turn out just fine. I have a Brother on and off life support 15 times in a year I gave a kidney 22 yrs ago. My Husband has a terminal diease my 25 yr old daughter just had her breast removed and has two small children. GOD IS GREAT I just want you to know I pray for your little one every night. I know the Lord has given you and your family the strength to get through this. I wish you and your famil the best. I see in his future a great trip to see Mickey Mouse.

    Darlene Lass

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  3. What a testimony! Your strength through this journey is amazing! I know that God will stand by HIS WORD concerning Parker because you have the faith of a mustard seed that can move mountains!

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  4. What fantastic news!!! I've checked many times for an update and thought that you must be absolutely exhausted. I'll be continuing to pray for healing and some normalcy for you and your precious family.

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  5. Thank God for this great report! I have been on pins and needles waiting for it ... also had 2 donuts :). Yesterday they were FREE for DONUT day ... what a neat surprise and I took it as a gift from Parker!

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  6. Great news!!! Glad to hear Parker is doing well!!

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  7. So happy for ya'll. I have to tell you a story about the shark bite scar.... we have 2 biological children, 1 adopted son, and have fostered 15 other kids. Our youngest biological son DaKota had a PDA (heart defect), he had surgery when he was 8 weeks old. He was cut from the spine to under his arm. The scar has grown with him (he is now 16). I did not know my son and his brothers told one of our foster children jokingly that he had been bitten by a shark. I took the foster child to CVS where the cashier had a scar. He asked the cashier about his scar, and then told well my brother was bitten by a shark. I about fell out. I am so thankful the advance in medicine, our babies would not be here today. God is good all the time!

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  8. So glad that he did well!!! Many prayers that his road to recovery will be smooth and quick!

    Nicolle
    Mommy to Kasey RCDH 11.16.08-12.19.08

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  9. So glad Parker did well. I will continue to keep him in my prayers.

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  10. It is the most frightening experience in the world to have any serious health issues for our children. I understand all that you wrote about as I've been there with two of my own. I'm so happy for the successful outcome and hope for all of you many future blessings. :)

    Sylvia Wray Welsh
    (friend of Sharon Swearinger Willis)

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  11. "He will cover you with his feathers, Under his wings you will trust." Love and prayers...for you ALL! (Caught your blog on FB) Marsha at Olive Forge Herb Farm

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  12. Hope Parker is doing well!!

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