Heart Surgery: Surgery for definitive repair of the defect

7/29  He was three days old when he had surgery to repair his heart.  I slept under the window and woke up to a "blue true dream of sky."

[G]'s right leg had swollen where he had the catheter the night before.  The swelling extended down his calf all the way to his toes.  We expected some of this, but it did look odd and somewhat painful.  At least he was only barely awake.  I continued to pump, but couldn't get any milk.  I was worried that I had lost it.  They said reassuringly that stress can cause this, and that it would come back.  So I pretended not to be stressed.  I closed my eyes and tried to transform the robotic sucking sound of the pump ("gwam-pa, gwam-pa, gwam-pa,") into the irregular human sounds of a newborn ("pant, pant, swallow, sigh; pant, pant, pant, swallow, sigh).  It wouldn't work because I was only reminded how badly I wanted to hold him. So I tried walking to the end of the hall, where there was a baby who was always crying. I stood outside her door to listen, since that is supposed to trigger let-down. I thought about asking her family, "can I stay in your room, since my baby won't cry?" 

     I didn't have much time alone with him before the surgery. I could only think of all the things we hadn't yet had the chance to do.  What if this was it?  What if there would be no running through the grass, no favorite bedtime stories, no soccer or cookies or laughter?  I decided that I would use my last few minutes to sing him a song.  But I couldn't choose.  I hadn't had time to sing to him yet.   I thought of the hundreds of nights I had spent repeating songs I had learned from my own mother in dark nursery corners.  Surely I could not sing them all now.  I would have to choose.  "I Am a Child of God" seemed up for the challenge, but somehow my eyes watered into my throat and I couldn't get out the words.  This was how Paul found me when he arrived, struggling and failing to keep the tears at bay.  I blurted out a feeble warning that I couldn't stop crying.  
     Paul was able to hold him for the second time.

After that, we surrendered him to them. Sarah stayed with us, and was well-prepared with snacks (she always is).  Vince (our bishop) joined us after surgery. We set up a cutthroat game of Carcasonne on a table and wheeled it around the hospital each time we were asked to change rooms.  I pumped one single drop of colostrum, which I proudly labeled and froze.  We never did finish our game, (I was losing anyway ...) for after only a handful of hours, the surgeons were giving us a report.  Things had gone very well (imagine hundreds and hundreds of stitches in something the size of a newborn's fist).  The only negative piece of news was that during part of the procedure, one lung was nicked, but that it would heal.   
Hooray!  We were eager to see him again.  My parents had mentally prepared us for the way he might look, and it helped us look beyond the tubes.  They wheeled him in (a complicated maneuver, for sure) and I was just so pleased to have him back by my side.  The incisions and attachments were not as bad as I had feared.  I was actually most disturbed by the limpness in his legs.  They were resting on the bed, but they were straight.  Baby legs curve and bend, still accustomed to the womb.  His legs were straight, and it made him look more like an old man than a sleeping baby.  He wasn't just sleeping either.  He felt distant, far away.  I was glad.

What's That?
      1. sticker on his forehead: just a sensor
      2. red eyelids: sore from being taped shut during surgery
      3. tube in his nose: a nasogastric tube 
      4. tube in his mouth: an endotrachial tube for breathing
      5. incision: underneath the bandage, steriostrips, underneath the skin, stitches
      6. sticker on his shoulder: another sensor (I think there were about four on his back as well)
      7. sticker on his left side: sensor
      8. sticker on his right side: central line for medication
      9. fluid-filled tube coming out from "second belly button": for drainage
      10. 2nd tube coming out: for drainage
      11. tubes in his wrist: the I.V. (not pictured: a 2nd I.V. in his foot)
      12. sticker on his lower left side: sensor
      13. padding on his forearm: holds the I.V. in place
      14. gray tube coming out of his diaper: catheter
      15. tube on his left hand: dunno

When [A] visited after surgery, he asked the question everybody seemed to ask: "why do they have to tape his eyes shut?"

Our bishop gathered some possible answers to the question:
  1.    Because of anesthesia, your eye muscles are also immobilized which could cause the eyelids to drift open.  Taping them shut prevents them from drying out.
  2.   It prevents them from injury should a foreign object (or blood) go flying during the operation.
  3.   It protects them from harmful lighting equipment.
  4.  Because even though you are not awake, you may still be storing memories.  
My parents had been at the ready to fly in to Memphis ever since they had heard about the defect, but we decided to have them wait until their scheduled flight, which brought them in just at about 9:00 p.m. that night.  It was so good to get their hugs!  There's something so comforting about having my parents around--like I don't have to be in charge anymore.  It doesn't matter what happens, they can fix it.   I know I'm supposed to be an adult by now, but I still believe it's true.  


  1. So happy to see him "on the other side" in this post. I cannot believe all the accessories, wow. What a journey he has had already in his young life. Thank you for sharing these moments, they are so tender.

  2. just thinking about the stress of it makes my heart ache. What a challenging ordeal.


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