Sunday, July 29, 2012

Taking This Show on the Road

Mercy me.

Seventy days.
Time flies when you're having fun. (right?)

We celebrated the P-nut's "birthday" with a most exciting bit of news... he could go for his very first walk! What we were NOT expecting was that they would let us go with no nurse, no monitors, no nothing.  Just us and an oxygen tank.  When you've had 24-7 nursing care and 24-7 monitoring for ten weeks, being without them doesn't seem possible.  Still, we were going to take every opportunity to bust out of there! Jeremiah had been asking to visit again soon, and this was a perfect chance for a family outing.

We loaded Parker into the stroller, hitched up the portable oxygen, and rolled on out.  It felt a lot like the first time I drove a car by myself, especially when they yelled, "Be back by 3!" after us.  It was slow going, as we were so ridiculously terrified that we would take 2 steps, stop and look in the stroller, take two more steps, stop and look in the stroller, etc. etc. etc.

Mike and I both teared up-- we eventually picked up a moderate amount of speed, and the minute Parker felt the breeze on his face and saw something other than the ceiling of his hospital room, his whole face just lit up.  He is a smiley guy as it is, but these smiles were on a completely different level. 

 The Three Amigos.  Triple Trouble.  My heart and soul and life.

So often during this experience, we have realized how much we took for granted with Jeremiah.  Who'd have thought we'd have to wait 70 days to show our little one the sunshine? 
 Me and my boys and the newest member of our family, Mr. Oxygen Tank.

 Happy happy happy family.

 We didn't stay out too long-- 1) we were too scared, and 2) it was bleeding hot.  It was the most nerve-wracking half an hour of my life, and if it's any indication as to how life will be once we really do break out of there, I am going to be on every anti-anxiety happy pill I can find.  The maiden voyage is over, and it can only get easier from here!

We are just as ready as ever to get out of there.  Dr. Williams was happy that we didn't make a break for the parking deck and get the heck out of dodge.  Still, Parker continues to inch closer to the finish line. Earlier this week, he made it for an hour off of oxygen completely, but had to go back on after he got too low in his oxygen sats while deeply asleep.  I am happy he could make it for ANY amount of time, and the plan for now is to give him a few more days of support before trying again.  

Oral feeds are going swimmingly for the most part-- he has gotten up to about 50 ccs (ie 50% of the way to no feeding tube!) here and there, but it's not consistent just yet.  He's now officially off methadone (HUGE PRAISES for a non-opiate addict baby) and Lasix, and down to a small dose of Ativan and some reflux meds.  Checking things off the list.

Our big prayer requests this week are the same as always-- feeding and breathing.  He's doing so amazingly well, and we are SO CLOSE to going home.. we need this week to show big progress each and every day.  
I also need a big giant dose of patience, and approximately 100 reminders that God's timing is perfect, and He will allow Parker to show us when he's ready.  

I will finish off with my new favorite picture-- Jeremiah got to hold Parker Friday, and he was so very proud.  I simply cannot wait to see the tomfoolery these two will dream up.


Remind me of that statement in a few years.


  1. Kind of surprised y'all didn't make a break for it, to be honest :) Parker is getting so close! Way to (almost) kick the drug habit, little buddy. And so proud of him and his eating skillz! Will continue to pray for him to keep trucking along so y'all can get out of there soon soon soon!

  2. It seems you are so close to going home. Is that being talked about? I am so very happy for you! Parker, you are awesome! Continue to "say no to drugs!" (Well, a little Ativan is good for the soul!) ;) Keep up the progress! When it does come close to the time for you guys to move home, light a fire under the home care prep team. It seemed we got hung up on a lot of logistics of having home pumps and monitors ready to go when we were. It was so irritating when we were so eager to leave!

    There is so much sadness going around the CDH community right now that it makes Parker's story that much more of a delight to read! Another CDH miracle! Can't wait to hear the next update!

    God bless!


  3. So happy to read this report and can only begin to imagine your joy! The "tomfoolery" is close at hand :)! May these two brothers become BEST FRIENDS and bring a lifetime of joy to you and Mike. Roll KNOLLS, Roll!!!!!!

  4. Your post brought me to happy tears! I'm so thrilled with Parker's progress!!

  5. I am so happy Parker is doing well!!! You are such a cute family!