Saturday, June 9, 2012

Learning to love ECMO

We've had a blessedly boring 24 hours since Bonnie was placed on ECMO yesterday.  This means that the machine is doing its job--making sure her blood has the right amounts of oxygen and carbon dioxide, and also resting her heart and lungs.  She's still on a ventilator, but the settings are only high enough to keep her lungs from collapsing.  Her heart is still beating, but not with any real amount of force, because the machine is pumping her blood for her.

She's starting to get pretty puffy due to all the extra fluids involved when on ECMO.  This is an expected side effect, but this morning they added another little path to her ECMO circuit that's helping her get rid of the excess fluid to help her de-puff.  It's technically dialysis, like kidney patients sometimes have.  Her kidneys are actually working fine at the moment, they just need a little help getting rid of the fluid.  The nephrologist (kidney guy) that we spoke to this morning said that the kidneys often slow down and temporarily check out while a baby's on ECMO.  This has something to do with the fact that blood flow with ECMO is smooth rather than pulsatile (like it would be if it was being pushed by a heartbeat), and that the kidneys prefer a pulsatile flow.  Anyway, Bonnie's kidneys are still happy, but even if they slow down, everyone assures us that they'll "come back" once she's off ECMO.

The big news at the moment is that when Jonathan and I left the NICU to get something to eat this morning, I was telling her goodbye and she opened her eyes for me.  She couldn't open them much because they're almost swollen shut, but what a sweet sight it was for us.

To back up a little bit to yesterday, it was a big shock when we walked in to see Bonnie on ECMO for the first time.  I've seen plenty of pictures of babies on ECMO, but it's *so* different when it's your own baby.  Apart from the gigantic tubes of blood running into and out of her neck, the machine takes up about half the room.  It's pretty intimidating.  We've had some great nurses and ECMO specialists that have done a great job of explaining the whole deal, but my sleep deprived postpartum brain is having trouble putting all the pieces together.

The basic idea is that she has a giant catheter (tube) that's draining blood from her right jugular vein (giant vein in her neck).  It flows by gravity down to a pump type component that pushes the blood along.  So the blood then gets pushed into this magic blue box (which is about 4" square), where the carbon dioxide is removed and oxygen is added.  This step is what her lungs would be doing if they were functional.  After the blood is oxygenated, it flows back up into the other catheter in her neck, which is placed in her carotid artery.  From there, the oxygenated blood goes throughout her body delivering oxygen to her organs, and then it makes its way all the way back to the jugular vein to start the cycle again.

While we're not thrilled that Bonnie had to go on ECMO, we are so thankful that this technology exists.  Right now, it's keeping her stable and *alive*.  The trouble is that this is just a temporary fix.  She obviously can't stay on ECMO forever, so her body will have to take over at some point.  Please pray that being on ECMO is the break that her heart and lungs need to get stronger and prepare for when they have to do their job.  Also please pray for no complications from the ECMO.  So far she's doing great with it, but the risk of bleeding is a big one, since she's on a lot of blood thinners to keep the blood flowing through the circuit.

Last thing--Jonathan and I have really been touched by all the sweet messages and assurances of thoughts and prayers that we've received.  Thank you so much for loving us and our sweet little girl.  We're so grateful that we're not going through this alone.  God is good, all the time.


  1. Leslie, I don't know you guys at all, except through a mutual friend who posted Bonnie's birth and your blog on Facebook. I've thought about and prayed for all of you for the last couple of days and I've been reading through your journey with little Baby Bee. I am just thrilled to know she's doing okay with the ECMO, so I know your friends and family are jumping for joy right now! Keep the faith and know that family, friends and complete strangers are lifting you up daily in unceasing prayer.

    Peace, Love and Good Vibrations to You! Keeping fighting, little one!

  2. Leslie, I am Clara Hardy's grandmother. I LOVE the picture of Parker wishing Baby Bee well! The network of CDH families supporting and praying and caring for each other is just amazing. Your dear family is the newest on my prayer list. I have a hard time believing that I lived for 58 years never knowing about CDH, ECMO, and all the other medical terms our babies face. My life is changed forever. Fight hard, Baby Bee... Sending you love from Winston-Salem, NC...

  3. Prayers from Texas. Following your story through baby Jude also in Charleston.

  4. Continued prayers from Pennsylvania!

    Mom to Ramsey, LCDH survivor

  5. Found out about your family through one of your friends on Facebook who posted a link to your blog. Praying hard for your sweet little girl.

  6. Praying for you, your family and your little B.

  7. Lots of us from Kern Church are holding you all in our hearts and in our prayers. We love you!

  8. Patrick and I are praying for you guys and hoping along with you for the very best for your sweet baby girl. Thank you for posting the updates. She's a beautiful baby.

    Much love, Patrick and Julie Marcigliano