Thursday, June 7, 2012


Parker's Goals for this Week:

1)  Lose foley catheter, avoiding drama in the process
2)  Get rid of some medicines
3)  Clear stomach gunk

1-- check!! It came out today, no bleeding, no signs of permanent damage, and he's peeing great on his own.

2-- check!!  Milrinone (a medicine that helps his heart beat stronger to force the blood through the vessels) is all gone.  Morphine drip is already cut in half-- he will be put on bolus doses instead of a constant drip as soon as possible.

3-- check!! They have turned off the suction to his Anderson tube, which has been in place since birth.  Its original purpose was to pull out all the air and bile from his stomach and intestines, keeping them from taking up chest cavity space and also making them easy to move during surgery.  Since surgery, the tube has been sucking out the bile that was backing up into his system, but now he's pooping and everything is moving along nicely on its own so the tube is no longer necessary.  They left it in with no suction today, only gravity, and should pull it out tomorrow. 

All three of these things combined mean that Parker SHOULD start attempting feeds pretty soon!  They will start him with a feeding tube and approximately 3 drops of milk a day.  I am not really exaggerating... there is no telling how his digestive system will respond to stimulation of any sort, and reflux is almost guaranteed.  Still, I am anxious to start down that road!

I am also anxious (understatement) to hold him!!!  It has been 3 weeks and I am in dire straits.  Now that he's less scary to me, I am ready to scoop him up and not let go.  Methinks that is frowned upon in the NICU, so I will wait for clearance from the doctors and nurses.  It cannot come soon enough for me, but I also carry around a large fear of everything going to hell in a handbasket the second they hand him to me.  It's coming, hopefully sooner than later!

His ventilator settings are ridiculously low-- so low that they call it the "holding" settings where the machine is really not doing too much for him (let me see if I get this right-- oxygen level at 23, rate at 15, pressures at 21 and 7).  He's breathing over it really well, and his blood gasses are great.  They won't take him off the ventilator anytime soon, though, because they want to be absolutely sure that he can handle it before they extubate.  I am more than okay with that-- I've come to look at the ventilator the same way I looked at ECMO. Nobody wants to end up on it, but when it's time to come off, you realize how nice it has been to have control of the situation.  We're a ways off from that, but it's on the radar since Parker has had such a good week.

I'm not quite sure what to make of this good week.  Mike and I are ever so slowly starting to feel more confident that he WILL come home-- we made it past ECMO, past surgery, and his hypertension situation isn't currently a concern (per his surgeon.  Am going to get neonatologist's opinion on that tomorrow).  I know he's still on a ventilator, still hooked on drugs, and has to learn how to eat.  I get it... but we lived in "our child has a 50-50 shot at survival" for so long, and I am not quite sure if we are still there.  I don't feel like we are, but I'd like somebody else's opinion on it.  I know there are no guarantees, there is no set timeline, and it could all change at the drop of a hat. Fine.  I've heard that for 6 months.  I just need somebody to confirm that we've made as much progress as it FEELS like we have!!!

Whatever the answer to that question is, we are so proud of our P-nut and his fighting spirit.  I had Storytime Shift tonight, and I spent the whole time watching him sleep (peaceful baby sleep, not doped up baby sleep) and marveling at all that he's done in less than 3 weeks.  Love him so.


  1. From a fellow CDH survivor mama, I appreciate your realism of the situation, because things can change, BUT that is all major progress, especially for being an post ECMO baby too!!! Huge, amazing, progress on that vent especially!! So give Parker a little high five, cause he's working on kicking CDH butt! He must really be wanting that trip to Disney!!! Hugs!!!

  2. Hi Abby,
    I think your little P-nut has made wonderful progress. Although my Grandson didn't have as much of a hard time as Parker, I remember sitting there and watching the ventilator and watching him taking breaths for himself. It wasn't too long after he was doing most of the breathing himself that he was excubated.
    That was when my daughter and her partner were able to hold their special bundle of joy.
    Parker looks wonderful, and I think you have been great through all of this. You have a wonderful positive and determined attitude and you have your faith. That's what will get you through all of this.
    Remember, slowly, slowly wins the race!! Parker will let you know when he is ready to take the next step.
    Love and light from Australia
    Kerry McLachlan-Granny of survivor Connor 9 months old and doing great!

  3. As another CDH mama who has been through it, but not a doctor or an expert, I think Parker is doing awesome!!!!!!!!!!! What a strong little guy!!!! The feeding part is coming, and it can get very, very frustrating. It was actually the hard part of my journey, emotionally. I was so strong during the ECMO, surgery, post surgery days, but then you realize that your baby has survived and now just needs to learn to eat. And your adreniline starts to come down and suddenly everything becomes a lot bigger deal- things that you prayed you would get to worry about during the ECMO stage. Many, many prayers that Parker likes to eat!!!! Also prayers for a smooth extubation and that you get to hold him soon. I got to hold Dakota for the first time at a little over 3 weeks. It felt amazing -- I never wanted to get up!!!! I just sat as quietly as I could, hoping the nurses wouldn't notice me and remember to take her back =). Your day is coming soon!!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  4. He is amazing!!!

  5. Parker has done soooo well. I, too, feel like it is time for him to go home!! lol. Yes there is that vent thing... and yes he can't eat yet... but goodness!! He has done more improving then most NICU babies have to do to go home.

    I don't know how you are staying remotely patient!! He isn't my baby, but Im impatient enough for both of you! lol. He is cute... and pink... and needs to be picked up, :O)

    Do they give you guesses on when you will be able to take him home?? I mean, once the vent is removed and he eats... is there more he has to do? I so feel for you. I only went thru 3 days without being able to hold Penelope. Nearly lost my mind (those poor NICU nurses... bless them). You are handling this beautifully and with such grace.

    Praying... continually.

  6. You are ALL amazing ... may God continue to bless your special family. Read a quote to share with you ... "Savor life ... each moment is unique and a precious gift from God"! Think you have discovered this.

  7. Glad to hear Parker is doing so well! Those really are low vent settings... he'll be rocking CPAP or a high flow nasal cannula before you know it!
    As another commenter said - the feeding challenges can be the most difficult. It seems so simple - put food in, digest, poop it out. But as you know - the reflux can be a beast. Hopefully Parker will fly through the feedings challenges with no problems! (Just keep promising him tastes of his own Krispy Kremes!)

    NICU Nurse, Chicago

  8. Abby,

    My Michael fought his battles, but nothing like Parker's! Parker looks wonderful and obviously is a fighter, our prayers are with all of you. I know the days at NICU can get long, don't forget to take care of mommy! God Bless!

    Robin Davis

  9. I am so happy that Parker is doing so well! GOD IS GOOD!!!

  10. Parker is doing amazing! I know I have never commented before, but I've been visiting here and there! Having a fairly new CDH'er at home, I am kept pretty busy!! I remember the "feeling comfortable with the vent"... but Stormy had other plans... she extubated herself! =) Can't wait to see pictures from your first time holding... if he's stable, it should be anytime!! I held Stormy on her vent, for the first time when she was 24 days old... the looooooooongest 24 days of my life!!

    Keep up the good work! I wish I would have kept up my blog...

  11. I am no Doctor - but it sounds like Parker is doing amazing!! I bet that boy will be moving to CPAP or nasal cannula in no time!! Praise to God for many answered prayers and for continuing to heal him. Hoping that his reflux isn't bad abd he gains well. Finley's wasn't very bad and she transitioned well - we were on 1/2 breast feeds 1/2 bottle when we left hospital and within a month she moved to 100% breast! Just saying these babies like to defy expectations.

    Have you asked about holding him? Sometimes they will assume that someone else has already let you hold him and some nurses are better than others about offering. We got to hold Finley for the first time surgery day at 19 days, and then again 3 days after surgery because she was doing so well.

    So happy for you and can't wait to see that first time photo.... I still get teary eyed thinking about mine.

    Love from Oregon,

    Liz -

  12. PARKER AMAZES ME! He is such a strong little booger! Abby, NICU nurses never want to push "holding time" because the entire process is so overwhelming & anything is possible. Ask his team about "kangaroo care" on skin contact for an hour each day. I was granted an hour per day at Mickey's 43rd day of life. Feedings are a challange...don't stress over residuals or quantity. Your little P-man is rockin his recovery!

  13. He is doing just amazingly well! I am so happy for you! Hopefully, they will let you hold him anytime now since he is doing so well. I sure hope so! We will pray that feeding goes smoothly too. :)

    Jacob's Mommy
    RCDH Survivor

  14. SO happy to read this... Your spirit and your faith have been such an inspiration to me. That baby is gorgeous!!

    My son and I are reading this together- he's heard me talk about you and he wants to tell you this:

    I am so, so glad that you got to hold your baby for the first time today.

    I hope Parker gets well very,very soon.

    I will pray for the whole family especially Parker and I mean it.

    Andrew Donnelly

  15. Abby, I am so glad to hear about Parker. Lu-Lu is dancing!