Tuesday, May 29, 2012

What a Difference a Week Makes!

Just a week ago, we were in a really bad place.  We were getting ready to say goodbye to our little boy.

A week from today, we might be in a whole new place.  We might be looking at our newly repaired little boy!

Parker had a busy day today-- heart echo first thing in the morning, followed by the removal of his umbilical IV lines.  He got stuck in his heel for an arterial line that will do many of the functions his umbilical line was doing, and they pulled out his dried up yucky cord stump with accompanying tape and tubes.  Now, he just has a regular old belly with some monitor leads stuck on.  He got both IVs out of each hand, so those are freed up now. He's starting to look less like Bionic Commando and more like a lil' boy.  His head and neck have been slowly turned back towards the other side (imagine the crick after 10 days of facing the same way!), and the fluid in his head is slowly redistributing itself.  Perhaps the most significant moment of his day was being flipped in his bed so that he doesn't face the wall anymore-- he faces out towards the unit like a regular baby!  Big stuff happening for the P-Nut!

I got to change his diaper today, which made my heart glad.  Ever so slowly, I am overcoming my fear of my 8 pound child.  After some prodding and assurances that it was okay to do so, I grabbed both of those scrawny bird legs, hoisted him up, and took care of business. He did not break.  His IVs did not fall out or catch on fire.  The NICU police did not rappel in from the ceiling tiles.  I was so very pleased to be wiping that tiny hiney.  It's just adorable, if I do say so myself!

Medically speaking (here's the boring part for most people, but the interesting part for other CDH mommies):
He's on the conventional ventilator.  No nitric oxide.  Respiratory rates were at 50 yesterday, down to between 38 and 41 today.  He's on 40% oxygen level.  His blood gasses were great all day, and they will be looking to wean him down as much as possible throughout the week.  His blood pressure is a concern (it was too low several times today), but they cut back on his diuretic to help with that.  The echo results should come back tomorrow, which will give us an idea of what his pulmonary hypertension looks like now that he's off ECMO and responsible for his own circulation and oxygen exchange.  We are praying for good results on that and continued ease of transition to the ventilator!

I am also, selfishly, ready for him to be less sedated.  I usually take the day shift, and he's unresponsive to me.  (Mike, on the other hand, has now had several eye opening times during Storytime Shift.  I got a poopy diaper today.  Hmph!  I keep reminding myself that once it's milk time, Parker will find me most interesting!)  I know that he has to be sedated for many reasons-- pain management, his terrible terrible temper, maintaining his vital signs, and not disrupting the breathing tube.  With his surgery approaching, his sedation level will inevitably go up for a while.  Still, I am very very ready for him to enter baby rehab and get all of these medicines out of his system.  That's many many weeks away, and will be a slow, gradual process.  Those medicines are keeping him alive and comfortable for now, and I certainly wouldn't trade that. I've seen him restless during the last week, and I hate it.  Restless and sad Parker is infinitely worse than knocked out Parker.  It's a tricky balance-- now that he is starting to look more like a normal baby, part of my mind expects him to act like a normal baby.  We will get there!

I have to take a minute and say thank you to everyone who sends me Facebook messages or comments on here.  I read every single one of them, and I try to respond as much as possible.  Please know that all of the support means the world to us, and is a large reason that we are able to carry on with this odyssey each day.  Keep the prayers coming-- we have a long road.  ECMO was not much of a step forward... It was a measure to pull Parker out of the negative and put him back at ground zero, as he would have been on the day he was born.  We haven't even begun to deal with the whole reason we are in this mess- the hernia, the displaced organs, and the fallout with regards to pulmonary function and feeding.

Every time I am reminded of that fact, either by myself or by something the medical staff says, I think of the old Bill Murrey movie "What About Bob?"

"Baby steps down the hallway... Baby steps to the elevator... baby steps out the door..." 


  1. you don't know me, but i pray for little parker and your family every day. may you 'dwell in the shelter of the most high, and rest in the shadow of the Almighty." Psalm 91
    kelli from nashville

  2. I bet you never thought you could be so excited about a poopy diaper! ;)

  3. Hi Abby I am one of Ali and Chris Davis' small group friend and I am also a respiratory therapist so I love the "boring parts" of the blog because that is so my language. Lol I have kept up with your blog and we have been strongly praying for baby parker and you guys! I am sure it is not an easy road! You are in great hands at egleston and with the staff!! I am sure God is 100% leading them!

  4. His IVs did not catch on fire. LOL!!! You crack me up, Abby. So glad you got to change that wee bum. Love it. Wonderful progress happening here. His vent settings are fan-dam-tastic! Go Parker Go.
    Mama to Samuel, lcdh, Feb1/11

  5. HA. Your description of the diaper change was just what I needed after a crazy NICU shift! Your ability to find humor in this situation will definitely help you get through this stressful time. A month from now - you'll be able to look back and see what amazing progress Parker has made!

  6. No no no! It seems as though ECMO was a step forward. Conventional ventilator! No nitric! Pretty fantastic pre-surgery ventilator settings! Good blood gases! That's not ground zero or day one stuff. Not for CDH. Parker has been making really good progress. And we brought our CDH baby home on May 1 so I know what I'm talking about :)

    You are all in my thoughts. Keep up the good work Parker (and Mom and Dad)!

  7. Yay!!! Great news! Sounds like Parker is doing great!!
    Many prayers for a great day today!!!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  8. Love love love you sweet girl! It makes my heart glad to know you got to see that precious little fannie yesterday. Thinking of you constantly and covering you in prayers and praises of thanksgiving. He is good. He is mighty. He is sovereign. You are strong. You are brave. You are courageous. Xoxo

  9. I am reminded today how much you must be like Luann because you write so gracefully and reading everyone else's responses, it is evident that we love this little boy and love to read the blog it just adds to the strength of our daily prayers for him. Have a great one today.

  10. Abby, I stumbled across your blog via of a mutual friend we have on Facebook. I am praying for you and your sweet family everyday. I LOVE the humor you work into your posts - sometimes laughter is in fact the best medicine. Hope you are feeling well! Take care of you too.

  11. A baby step for us .... A GIANT step for GOD! He held Parker in His hands and gently placed him in yours. He will show you the way!

  12. Love the "What About Bob?" reference - so true! I am so proud of Parker (and you guys) for successfully clearing your bedspace of that ugly ol' ECMO machine. Good riddance. Wishing you all a week of rest and recovery as you prepare for the next big thing.
    Nurse Lauren

  13. Abby, I knew your Mom many years ago at Mt. Carmel. I can see from all of your writings that you definitely inherited her sense of humor. You are an inspiration...the way you've handled all this with such grace, humor, and faith. Thanks for keeping all of us informed. We are praying hard for your little Parker, and for you and your husband too!

  14. I found your blog thru a mutual friend on FB. So glad to see your little boy is doing so well. I have a friend who's daughter is currently at Egleston and she is doing well. She cannot say enough about the fabulous doctors and nurses that literally saved her daughters life. I am sure you can attest to that. Parker is in my thoughts and hopefully you have smooth sailing. All the best :)