Friday, May 25, 2012

Lifestyles So (not) Rich and Famous

First and foremost, it is Parker's one week birthday!  Happy birthday to my precious boy!

I have to be honest.  I usually internally mock the people with the "My baby is 467 days old today!" status updates.  NO LONGER, my friends.  If there has been anything we've learned in this last 7 days, 14 hours, and 39 minutes (see, I can do it too!), it is to treasure every blessed second.  So so proud of my boy.

Today was fairly quiet-- no real changes on anything except that they upped his diuretics with no upset of his blood pressure.  He peed and peed and peed and peed and peed all day.  *Note to others-- celebrating your child's pee might seem strange.  And it is.  But, after entering the phrase "scrotum sling removed today" in my journal, strange is a relative term.*  He's getting less puffy by the day, and it makes me glad. ESPECIALLY because, as I sat here typing, Mike texted me a video from Storytime Shift:

We have eyeballs!  The whole thing just makes me want to fall on the floor and laugh and cry and sing praises to God.  Best One Week Celebration Ever!

So many people have already commented on what a tremendous husband I have.  Trust me, I am aware.  He has amazed me this week.  I thought he was a fantastic Daddy before, but he has reached a whole new plane that I can't really describe to you.  I don't have to, 'cause you can hear it in his voice during that video.  Love that man.

In other news, Parker's day was, as I said, pretty quiet. They weaned down his ECMO a bit, but it's going slowly because the pressure on his lungs isn't going down as fast as they'd like.  I am much more fine with going too slowly than too quickly.  Dr. Williams stopped by before she left for her long weekend, and said that she expects him to still be on ECMO when she gets back Tuesday, but that her focus next week will be hitting it hard to get him off.  He's improving daily, his blood pressure is under control, and his xrays show lung growth every day.  We are hopeful.

Medically speaking, that's about it.  We were treated to many visitors today-- my boy is famous! Parker has the honor of being "the ECMO kid" right now, meaning he's the only one in the hospital on it.  He is now one of the stops on the Egleston tour for visiting dignitaries.  Today we saw many groups pass through, some of IT/tech people looking at the electronic chart systems and some of physicians.  They all stopped to see Parker's setup, which I must admit looks scary as crap impressive to bystanders.  I told Parker they were all coming to tell him happy birthday.  I don't think he bought it.

What also has amazed me is how many of the staff members know about Parker and keep up with him.  Lots of people who aren't technically assigned to his care swing by to see how he's doing.  Our sweet sweet transport team from Northside to Egleston stops by each time they bring in a new baby (which is too often, in my opinion.  So many sick babies!).  One of our ECMO specialists said he logged on from home on Wednesday to check on Parker after the Terrible Tuesday episode.  It makes me happy that so many people are invested in his care.  And our care, to boot-- anybody who works in a NICU is taking just as much care of the parents as they are the babies.  Bless their souls.  I would have kicked us out by now.

We are all settled back in our house now-- we retrieved our sweet Maggie, who has spent the last day collapsed in a pile of exhaustion from playing all week with her brother.  We slept like the dead in our own bed last night.  Jeremiah has been most pleased to be reunited with his baseball bat and glove.  We sure do miss JeanJean's Bed and Breakfast, where you eat until you burst and are fussed over 24/7.  She took such good care of us all week and I love her to bits.  It was so nice to be close to the hospital, and she gave us a key to keep so we can crash there whenever we need.  JeanJean rules.

We are trying to set up our "new normal" routine, factoring in a drive that is now 45 minutes each way and the fact that Mike may be headed back to work in 10 days.  It's hard, and tiring, but it's nothing compared to sweet moments with both my boys.  Jeremiah asks every day when he can play with Baby Parker.  Our standard response is "Parker is too sleepy to play right now."  Now that he's opening his eyes, i.e. waking up a little, we are one step closer to having two little boys tearing around the backyard with baseball bats and swords.  Hurry hurry hurry.


  1. Praises! Praises! Praises!! I am from a small town in Texas, and I stumbled on your blog from Kelly's Korner. I never read the Show us Your Life, but when I saw you were the first one, and you were due that day curiosity got the best of me. I literally check your blog several times a day so I can check for updates on your sweet boy! I pray for him and your family daily. During my quiet time I was given this verse..
    "So do not fear; for I am with you; do not dismay, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:3
    I will continue to pray for Parker, and I give HUGE praises to our God!!


  2. Praying for Parker and family from Pearl, Mississippi. I found your blog from another blog. My husband and I had two premie babies, one of which had heart surgery at 8 weeks. We have since adopted a boy. They are all three boy's (16,17,17) Our oldest just left this past Monday for boot camp. I understand counting the days while they are in the hospital (done that), now I am counting the days til he comes home.

  3. Prayers for Parker and his family from North Carolina... As a CDH grandmother, I have walked your walk. Remember to take good care of you as you regain your strength. "The new normal" is a term we used as well. It does take some adjustment until you figure out what will work for your family. I'm really proud of how well Parker seems to be doing. I adore your incredible writing. What a storyteller you are! I hated hearing this, but I'll remind you: Remember that this is a marathon, not a sprint. Love, thoughts, and prayers...

  4. I also stumbled onto your blog from Kelly's Korner on your due date and have kept reading to check up on Parker. I'm a grandma of 3, with another one on the way. We had one of our granddaughters in the NICU for a few days for something fairly minor and that was hard enough. Praying for you and your baby boy! And you do have a great writing style, you know how to tell a good story and keep your sense of humor in the middle of all of this. Blessings! Donna from TX