Wednesday, May 23, 2012

I Lift My Hands

Y'all.  These last 24 hours have been 24 that I hope and pray to NEVER have to deal with again.  I apologize for the vagueness of the last post, but Mike and I had pretty much been told that yesterday might have been it for Parker.
The day started out normally enough, we visited and held hands and read stories.  Pastor Ron came by and prayed with us.  About 3 o'clock, it looked like he started hemorrhaging out of his penis.  (I can tell you straight up that there is a sentence you never like to type about ANYBODY!)  The bleed is worse than it should be due to the heparin (blood thinner)  required by ECMO, and it just would not stop yesterday.  As fast as they could put blood in, he would leak it out. 
They gave him an off-ECMO trial for a few minutes, since the bleed will not stop until he's off blood thinners. He didn't do so hot on that, so coming off ECMO wasn't a choice at that time.
They tried to address the bleed.  His heparin was lowered, he was given platelets and coagulants, nothing worked.
About 15 doctors and nurses crowded around the bed.  The medical director was called in.  These are never good signs to a NICU parent.
After much discussion, a plan was set into place that the urologist would come insert a thicker catheter in hopes of increasing the pressure on the bleed and lowering the volume pouring out.  Without anybody really saying as much, we were rapidly approaching the "last ditch" efforts. If the bleeding didn't stop, he was going to come off ECMO anyway.  Mike and I were sent away for a while, so we came home for my medicine and to tell JeanJean and Jeremiah that we'd be gone for an unknown amount of time.
It was a horrible drive home.  Mike and I were hysterically crying, praying, and trying to maintain some degree of faith that this would work. 
We got back to the hospital and stood in the hallway waiting for the doctors.  All of this went down right at shift change, so we were out in the hallway for a while- pacing, praying, clutching each other.  In the middle of all this, I had to keep to the pumping schedule (any mommies out there know that the milk machine presses on regardless of emotional turmoil).  I spent that entire pumping session praying to God to please please please let this bottle of milk be needed one day.  It was a dark dark time.

*insert break to thank you all for your texts, Facebook messages, and blog comments.  We felt it, we really did.*

We finally got the call to go back to the unit, and we walked into a calm, tranquil room.  The larger catheter is doing its job, and the bleeding has slowed to a trickle (it won't entirely stop until he's off ECMO).  Everything was stabilized, and he was back on his paralytic to ensure no jarring of his extra sensitive man parts.
We settled back down, rubbed his little hands and face, and told him that was enough drama for the day.  The doctors were relieved, we were relieved, big exhale.  Aaaaaaaaaaaaandddd.............


ECMO circuit blows.  Mike and I shoved out of room again. Herded in to small conference room.  Thankfully, it was a pretty quick wait and the doctor came in quickly.  Parker handled the whole thing perfectly, and his "reserves" of heart and lung function were actually better than they had been during the afternoon.
Mike and I called it a day, at that point.  We made sure that he was settled and read to him before we knew we had to go home to rest.  We slept with one eye and one ear open, waiting for the phone to ring, which it blessedly did not.

His day today has been eventful-- an ECMO circuit change for clean tubing (the old ones were getting happens on almost every ECMO run and is to be expected.)  He did great and stabilized quickly afterwards.  He has been put on dialysis for a short while, which is also normal for ECMO circuit changes.  There is usually an accompanying fluid buildup with an circuit change, and the dialysis helps with that.  It's temporary and shouldn't have any bearing on his ability to get off ECMO as soon as possible.

We are, basically, back where we were before all this went south.  I am pleased to be there.  I knew, going into it, that we'd have our share of ups and downs, and I've honestly been waiting for the first shoe to drop since Friday.  Nothing can prepare you for when it does happen, but God's grace and thousands of prayers carried us through yesterday.  I read and reread and reread Psalm 46 last night and this morning, and listened to "I Lift My Hands" by Chris Tomlin.  God is our refuge and strength, and an ever present help in trouble.  No doubt about it, or else we would not have survived the last day, and neither would have Parker.
Thank you all for you many many prayers, love, and support.  Here's to a better day today!


  1. I love this song too...

    So happy that things are better.. One of our NICU nurses called this dance - stabley unstable.. when your baby is the sickest in the NICU, even when they are "stable" it is still critical and that was so hard to grasp those first few days for me. Praying for Parker to continue to get stronger each minute, each hour, each day. For him to be able to come off ECMO soon, for wisdom and discernment for the doctors and people caring for him and there will be no mistakes or accidents, for God's perfect timing for his surgery - for the Great Physician to complete healing within his body. For supernatural strength for you and your husband - for lots of milk, and for God to continue to make his presence known to you in a million different ways throughout each day and night.

    Sending love and prayers from Oregon.
    The Dooley Family

  2. You all are in my constant thoughts and prayers!

  3. Remembering you guys constantly in prayer. I read a quote once that said, "the decision to have a child is to decide to have your heart forever walking around outside of your body". You're living that vulnerability right now. *hugs*

  4. Prayers of thnksgiving going up to our God the Great Physician! He lifted Parker from the valley and now is holding him close so Mr. Parker can get stronger. Thanking God also for sustaining Mom and Dad through this tough time. Just may have to have a thanksgiving donut this afternoon!

  5. All I can say; Oh my ..... Thank you God and God Bless Parker
    Without words but with much love
    The Simpsons
    Amanda, David, Noah, Abi and Byrdie

  6. Hello to Parker's special mommy and daddy! I'm Wimberly Kneisler, Jill Johnson's cousin. Jill has been gracious to gather her prayer warriors, and I was ever willing to join the army! Please know your whole family is being prayed over - all the way in Chesapeake, Virginia! God love you! God Bless you! And we're all cheering for Parker! <3

  7. Oh dear, Abby. What a terrifying ride you've just taken. Terrifying. I could feel my heart in my throat just thinking of you pacing the hallways waiting for them to come back out to you. I hope that things will be really boring there for a couple of days. Boring is good. Hold tight to one another.

    Big CDH-mama hugs coming your way.
    Mama to Samuel, lcdh, Feb1/11

  8. I've been singing Our God by Chris Tomlin ever since I read your last post. Our God is healer,AWESOME in power! Prayers for all of you.

  9. I pray for a more peaceful day for all of you. Parker sounds like a real fighter and we will all continue to be in his corner. I KNOW that God is right there with you .... holding those lifted hands!

  10. Ah, what a strong little guy you have!!! He's got this! Unfortunately, I think most of us CDH parents have had a day like you describe (albeit with different circumstances since each of our little babies are so different), but I remember the absolute sheer terror like it was yesterday. For us, it was that the cannula in Dakota's neck shifted so that she could not maintain the flow of the machine that the surgeon ordered. At the same time, the machine was clotting. The alarms were going off all day and my heart remained in my throat all day until they decided that this meant it was time to come off ECMO and Dakota made it off beautifully. I am so, so glad you all made it through. Many, many prayers for a good day today!
    Mom to Dakota 12-25-2008
    RCDH survivor

  11. Abby- Tears are streaming down my husband's and I face as we relate to the panic of what you are going through. We want to hug you like crazy!!! You got this!!! God has got this for crying out loud!!! l love your writing and your heart in all of this. I know how busy you are to even breath let alone pump and be with you little Parker but when you get a small chance can you do me a favor and write your mailing address on your blog or in a personal email to me. I have something I need to send you there at the NICU that I want to encourage you with. My email is Just reading through our blog and seeing all the sweet msgs you sent us. Jason and I are praying many times a day for you. Keep strong and at peace and rest in our mighty savor!!! Love the Holtrops

  12. Lindsey says it best "dear God watch over Parker AMEN"