Monday, May 21, 2012

Drama Queen

After today, it looks like we will have to institute some sort of discipline system for Mr. Parker.  He has, um, sort of a *minor* temper problem.

Turns out that he spent his morning throwing such a fit of baby rage that he shorted out his ECMO machine.  Mmmmhmmm.
He threw two more fits while Mike and I were visiting.
These fits are a mixed bag-- on one hand it is delightful that he is strong and fighting and aware enough of his surroundings to know that something is afoot.  On the other hand, he's in a rather precarious situation already and doesn't need to be exacerbating it by thrashing about and trying to cry, in the process getting his blood pressure and his oxygens sats all out of whack.

Suggestions for a reinforcement system for a 4 day old?  His penmanship skills are lacking, so I can't make him write "I will not short out my ECMO machine with my buffoonery" 100 times.  His bed is already in the corner, so that's out.  Sigh.

His doctors and nurses have determined that, due to his inability to calm himself down just now, the only course of action is an extra shot of morphine and Ativan.  His fit this morning was so bad that they had to put him back on his paralytic for a while.  Drama. Angst.

What is likely happening is that his regularly scheduled medicine dosages need to be adjusted. It might be that he metabolizes medicine faster than some other babies, which is supported by the amount of urine he's outputting.  Naturally, if his meds start to wear off, he's going to be unhappy. I can't blame the guy! Dr. Williams upped his doses today, and he has remained quiet and restful since then. 

In other news, his dopamine is down from 16 to 10.  This is the medicine they are using to try to regulate his blood pressure, and if it can go away completely, that would be super.  As of right now, his ECMO setting is at a .28, and the goal is a .20.  I got a better explanation today, so instead of elves living in the machine I can actually explain what that means:

When we arrived today, his ECMO setting was at .33.  This basically is the speed at which things are moving through the machine (I THINK it is liters per minute).  As his lungs get stronger and are able to contribute more oxygen to the mix, they can decrease the speed with which the machine is circulating blood and contributing oxygen.  The lowest you can go on an ECMO machine and have it still functioning is .200.  If you can tolerate a .200 setting for an extended period of time, it's likely that you are ready to come off and try to be supported by the ventilator instead.  This is our goal, naturally.

At 2 o'clock this afternoon, he was at a .33, and as of right now he's at a .28 and holding steady.  He went down .05 in just a few hours, and he's only got .08 more to go.  Obviously, they do this at an excruciatingly slow (to us parents) rate and give Parker lots of chances to prove that he's either okay with the new number or needs to go back up.  He did go back up for a while after his fit today-- so we are hopeful that upping his meds will prevent such fits and therefore prevent anymore uppages on the ECMO dial.  Dr.Williams is going to give him the rest of this week to get down to that .200 and get rid of the dopamine.  If he can do both of those things, he will be cleared for takeoff for Phase 2 of his CDH fight-- focusing on repair surgery and growing some good lungs.

It's wretched to see him pitch a fit. It looks, on the outside, just like any other angry baby-- red face, squinched up fists, blotchy skin, kicking legs.  If you put a normal angry baby on mute, you'd have Parker. He's doing everything the same, just no noise is coming out.  It's heartbreaking.  He's uncomfortable, and I can't pick him up and snuggle him and make it go away.  The only thing that can be done is to drug him into submission. They also have told us that he's sensitive to touch and prefers to be left alone.  These two things together might possibly conjure up visions of a stoned-out baby, left languishing on his bed alone in the corner.  I can assure you that is NOT the case.

His nurses take such good care of him.  While I hate that he's in critical care, I love that he has one nurse assigned just to him, and for right now also has an ECMO specialist assigned just to him, each shift.  It makes it much easier to come home at night knowing that he's never ever by himself.  We, of course, are jealous of those who spend more time with our baby than we do.  We watched a diaper change today, and Mike commented that the nursing staff has changed more diapers than he has.  It's hard to know that I can't comfort my baby, but a nurse with a syringe of medicine can.

Still, we have to look at it like we did ECMO-- if that is what has to happen for him to survive, that is what will happen, without a doubt.  Plenty of time for dirty diapers and screaming fits later!!

In the meantime, I kept watching poor baby P-nut struggle today, and I kept telling him to just relax and calm down.  Into my head popped my verse for today- which I think all of us could benefit from right about now...

"The Lord will fight for you, you need only be still."
Exodus 14:14


  1. Abbi, reading this made me want to cry and laugh at the same time. I hate that you can't pick Parker up and comfort him and love on him like Mommy's do with their baby. But I am glad you can still find a sense of humer (bed in corner or writing 100 times) Lol. Praying that Parker does well for the ecmo machine to be turned down and that you all can move forward to have the repair surgery. Love and Prayers from Kershaw, South Carolina!!

    Shay Connell

  2. Abby, has anyone considered that he may be in donut withdrawal?! Couldn't you smoosh up some Krispy Kreme and put that through one of those IVs?!

    Really though, I *know* how hard it is to not be able to comfort your baby or do anything for him when he is upset. I remember that Samuel liked if I held his head in my one hand and his feet in my other, kind of craddling him like he would have been in the womb. I sat like that for hours, my arms through the holes in his isolette, shushing him or praying silently.

    Hang in, mama.

  3. I love that verse. You are exactly right. My advice to you guys- gets as much video and pictures as you can. When you get a chance, pray, sing, hold there hands and touch them as much as you can even though they are sensitive to everything. I am so proud of you for being so strong. I couldn't stop crying at first and it was so hard for me to be around Esther at the beginning seeing her that way . Its what I regret the most- not being strong enough to just cry and be and pray and sing and love every moment. You are doing just that. Keep it up. Sending love and prayers from Washington- Rhonda

  4. Exodus 14:14 will be my prayer for Parker all day today. NICU staff memebers are an amazing group of people! I believe God gives them unique gifts to care for infants and support parents.

  5. Thank you Abby for sharing your story and your faith. You are an wonderful writer I have a feeling your mom is beaming with pride.. We love you, Parker, Mike and Jeremiah!

  6. Hugs!!! That is the worst. Dakota was VERY drugged during her time on ECMO, in fact I never saw her eyes that whole week and she really didn't move at all. The only time I saw a reaction was once when someone banged a cart into a glass door which made a huge bang and her little arms went up into the air with her hands fisted .... so cute!!! It will get better, I promise. Many, many prayers for a good day today!!!!!!!!!!!!!!!!!
    Mom to Dakota 12-25-2008
    RCDH/ECMO survivor

  7. Hi Abby! Thanks for the updates. I'm saying prayers for Parker and your family. Keep the faith, Krista Cosgrove

  8. HI! I have really enjoyed reading your perspective on Parker's journey. I was the transport nurse on Angel II that took him to Egleston. It's nice to see how loved he is! I checked on him today when I was there dropping off another baby. Thanks for sharing your story. You are a wonderful writer. Kelly McDonald

  9. You're an amazing Mommy & he feels your love! I wasn't able to hold my son , Mickey, until he was 42 days old & then for an hour per day until day 80. He too was sensitive to touch & then holding him burned too many calories. 1st diaper change at 42 days and first 1cc of milk with a bottle at day 43. He is now 5 and I remember those moments like yesterday. He of course remembers nada & is the sweetest child you could ever meet. Parker knows you are there loving him through it all. Abby, God will cradle you & carry you through this amazing journey!