Friday, July 20, 2012

You want the good news, or the bad news?

Good news--
Parker is medically ready to go home tomorrow.

Bad news--
Parker is not medically ready to go home tomorrow.

Yeah... I see your furrowed eyebrows out there.  As well they should be.  We're in a tricky stage of the CDH game, but we have the very best team of people helping us to negotiate it.

Our much beloved Dr. Williams is back on our rotation for the next 4 weeks.  She's the one who checked us in the day Parker was born, and she was with us the first two weeks of his life.  She was there during the worst of it, and she talked me and my husband off the ledge many times.  Particularly during the time that we thought he was a goner.  She's very warm and caring and approachable, and we are happy to have her back.  I decided today that I felt comfortable enough to ask her the question on everyone's mind:

"What has to happen to get us out of here?"

This last month has felt like an eternity.  We've been in the swing beds, plodding along.  He's made remarkable progress during that month, but it's not as grandiose as the progress he was making during the first month.  It's been slow.  We've gotten accustomed to a quiet and calm life in our gigantic private room, so much so that I honestly have a part of my brain that says, "This is your new normal, and it will be this way forever."  I KNOW that isn't the case, but it is truly almost impossible for me to envision a life with Parker at home and me not having to go to Egleston every day. (This is hard for me to explain, and I wonder if this happens to all NICU mommies after a certain time... you want to go home, you have faith that you'll go home, but at the same time, your life has become so entangled in the hospital that you've somewhat resigned yourself to being there forever.  Am I losing it?)

Anyway-- the short version of the story is this:  Dr. Williams has sent kiddos home in exactly Parker's condition.  He's on 1L flow of oxygen, which means he could go on low-flow (he probably will do that in the next few days) and take that home.  He's got a nasogastric feeding tube and he gets his feeds via a pump.  Lots of kids go home with feeding tubes, some in their noses and some surgically inserted through their abdomen.  He's still on methadone and Ativan and Lasix and various other meds, but we could administer them at home. We could sashay out the hospital tomorrow and be just fine.  We actually wouldn't do much sashaying with the tanks and pumps and whatnot, but you know what I mean.

Dr. Williams sees a different homegoing in store for Parker.  She sends babies home when she is convinced that they have hit a "plateau" of sorts where their day-to-day improvements have significantly slowed.  They will continue to get better, of course, but over extended periods of time. For some kids, that means being on oxygen and a feeding tube and meds at home, working to wean off of them over a period of months.

Dr. Williams thinks Parker might be just enough of a booger to go home "unencumbered."  She wants to give him a chance to prove that he doesn't need in home oxygen or a feeding tube.  He most certainly hasn't hit a plateau yet-- though it might feel like we have stalled out, he's really moving along nicely.  She wants to give him a few more weeks to see what he's made of.

Bottom line-- we will be out of there by the end of August(*****INSERT LEGAL DISCLAIMER OF NO GUARANTEES, YADA YADA YADA, THINGS MIGHT CHANGE, ETC.*****).  Sometime between now and then, we will know exactly how much home support Parker will need, if any.  He might go balls to the wall and leave all the tubes and tanks behind.  He might say screw it and come home with every bit of equipment he's got today still attached.  However, he won't go anywhere until he stops making significant improvements.

I felt lots better after our chat.  I am so stinking ready to get the heck out of this darn tunnel, and I am happy to know the tunnel will end in a month*****.  Do I want to come home with drugs and a feeding tube and an oxygen tank?  No.  Would we learn how to operate such equipment so that we could finally be a family of four under one roof?  Of course, and we would do so with grateful hearts for having him at home at all.

One way or another, we are going to be together in time to teach Parker how to call the Dawgs*****.  After all, isn't that what really matters? :-)
43 days. Just sayin'.

I think we can all agree to come away from today's talk and call it good news.  Parker is up to 10 ccs of breastmilk from a bottle every 3 hours.  That's a whopping TEN PERCENT of his entire daily intake, but you know what, we'll still call that GOOD NEWS.  But...
Parker was circumcised last Friday and got his first rounds of immunizations today and yesterday.
BAD NEWS.  Poor P-nut.  Thankfully, he has recovered well from all such means of baby torture, and is none the worse for wear. 

Mike and I were a little bit thrilled to have reached a point where those "normal baby traumas" are the only traumas in sight.

One more month... ish.***** Home by my birthday?****** 

Let's do this.


  1. Goooooo Parker!!!! "Balls to the wall" as your Mama so eloquently put it ;-). What a handsome little devil!!

  2. Balls to the walls Parker. You can do it you have your mama in you!!!!!!!!!!

  3. Give it just a little more time. In the long run ALL of you will be better for it. Home should be his haven ... no pain, just love, sweet love and all the room in the world to grow and GLOW!!!!! It's only a heartbeat away now ... be patient .. let God show you when!

  4. Yaaay to Parker. August is really close and soon he will be just another boy tearing up your backyard.


  5. Abby, I completely and totally understand your feelings that the hospital is just your new forever. I remember that I wanted to go home and was terrified to go home in equal measure. At a certain point, I knew I could do whatever was needed to take care of my baby at home. And then I couldn't imagine not having all those professional people laying eyes on my baby and telling me how things were going.

    Ask to have a couple of day passes before you go home. We actually did 3 or 4 passes before the real discharge. It was awesomely helpful. The first time it was only for 4 hours between meds so we drove home, stared anxiously at our baby, showed him his room, took some pictures and drove back. Still.. awesome.

    I **LOVE** that picture of him smiling. Just awesome. Glad to see your update.

    Mama to Samuel, lcdh, Feb1/11

  6. So many good news and reasons to be optimistic! Wonderful! Great recent e-pix! Happy 2-month-birthday, Li'l ParkEd! Love. Oma & Opa Knoll. 2012-07-23rd Mon-12:18