Heart Surgery: Recovery

 7/30-2/15 Recovery

The day after surgery, [G's] right leg was noted to have a purple discoloration.  An ultrasound was obtained which revealed extensive thrombus, or more specifically, "acute venous embolism and thrombosis of deep vessels of proximal lower extremity" (the common femoral, right superficial vein, and deep femoral vein, right distal external iliac vein, and greater saphenous vein, with absence of flow).  To treat it, they began subcutaneous injections of Lovenox. The blood clot was a known risk factor of the cardiac catheterization he had had during the balloon procedure, which was necessary to sustain life.  You won't hear me complain.  

That morning, they took him off morphine.  I surprised myself by feeling very uneasy about withdrawing pain medications.  As much as I wanted him to wake up, I was afraid for him.  How awful would it be to wake up to all that pain when you'd known so little of the world?  It seemed so soon.  

The kids came to visit, eager to try out their new stethoscope:

For nine months, I had been looking forward to placing our new baby in their arms.  They wouldn't get to hold him for some time yet, but we figured out how to lift them over all the tubes to get them closer.  We turned a blind eye to their coughs and crossed our fingers that they wouldn't get him sick. 

I love seeing these pictures now, knowing how much they have loved clowning around with their little brother.  I missed my big kids like crazy when I was at the hospital. 

I was doing better with my milk coming back; each time I pumped the amount doubled.  He couldn't drink it yet, but I wanted to be ready when he was.

When he woke up the first time, it seemed like a brand new birthday.  It was different than being born, but also different from returning from somewhere.  There was both a newness and a familiarity about him.  I later scrawled in his journal: "this morning you opened your eyes at the sound of my voice.  You traced the sound and gazed at me.  How grateful I am for these moments!"

True to himself, he immediately tried to put his hands in his mouth.

 

It made me want to cry; seeing his initial frustration and ultimately his meek acceptance when he settled for this position:

He really does adapt courageously to tribulation.  He doesn't get upset or place blame, he just finds a way to make the best of things.  (I guess he's never been two before, which is why I can still say that with a predictive smile.)

The best part about him waking up was tickling his toes.  He wriggled them, annoyed, just as a newborn ought to.  My heart fluttered open, concluding (perhaps erroneously) that if he could be tickled, then surely the pain in his chest (or his leg, or his you-name-it) wasn't so bothersome.  With so many reasons for him to associate human touch with pain, it was wonderful to imagine him associating this one with amusement or even irritation.  

7/31 Two days after surgery . . .

For the first time in days, he was allowed to eat orally again.  His nurse fed him my breastmilk from a bottle, and I didn't try to hide my delight.  We couldn't hold him yet.  

We were relieved when he learned how to take the bottle; oral problems are common.  Sadly, it was too soon to celebrate.  That night, he would have to fast again due to complications.  That may have been the day he had lung problems.  We started to notice these weird hiccups, too regular, too mechanical.  Then suddenly he started leaking blood through the bandages on his chest.  The top layer of gauze was changed, and soaked again in minutes.  Doctors were informed, and I remained at his side while they removed the oozing bandages to find out what was going on.  I remember the gush of crimson underneath, flowing from his chest like a stream of honey.  The color was slightly more translucent than blood, as if diluted.  They decided quickly that if he wasn't bleeding, it was only a pneumothorax, which was good news, apparently.  We ran out of gauze, more was fetched, and he soaked that too.  That's when I remember the doctor getting nervous--not about the baby, he knew how to help him, but about the mother.  I was holding [G's] hand and could see everything.  Maybe it was too much for some parents.  I think I stayed calm, especially when they glanced at each other about me (meaning: whoa, maybe Mamma doesn't need to see this; is she going to panic?  Will we need to get her out of here?) and kept repeating, "this is NOT blood, it's just fluid." I believed them, though my distress was real when my baby started coughing.  Each time he coughed, the bloody fluid would spurt out the opening in his stomach.  Then he started to wail.  He had barely made a peep in his entire life, he'd been too oxygen deprived to waste the energy; so when each gush made him wail louder, I knew he was serious.  

Yeah, that sucked.  

They did an x-ray and confirmed there was fluid in his lungs, which they easily drained.  (Out of consideration for me, I think, they changed the gigantic collection vial out for a neat empty one when I stepped out of the room so that it would appear to me that he had not discharged as much ghastly juice as he actually had.)   That event was probably the most gruesome, but the doctors and nurses did a great job handling it.  I never doubted he was in good hands.  

That night, I pinned a few thoughts to paper: "You [G] had open heart surgery on Monday.  They put you on bypass.  They circulated your blood for you, breathed for you, slept for you.  You came back limp and distant.  You were far away.  I touched your soft beautiful hair, a shoulder, a toe.  You slept and slept.  I was afraid to wake you.  They took you apart and rebuilt you.  They stood in the very breath of the Leviathan, and performed the work of a god, not out of defiance but out of faith in the great divinity and power and freedom of Man.  They rebuilt you and I watched your blood surge through your heart on an ultrasound screen; powerful and sure, rendered crimson red for its determination to pulse out of your arteries, so swift with vitality."

8/1 

I think the next day I was able to hold him.  My friend Kelsie came by, and I felt her genuine compassion and was glad of her companionship.  

Many others found ways to reach out to us.  Katie took a load off my mind by taking over my church calling.  Gifts arrived from Tracy, from my brother Nathan (a model of the heart that now sits on our bookshelf), from Stuart, from J. Bodecker, from Dr. Ross, from Gianetta, from Stephanie's grandma, from Andrea, from grandparents, from the Ginn's ... it seems futile to make a list, because the generosity we received eclipses this pithy mention of it.  We are grateful for the wonderful love and support we felt from everyone.  

Paul got to hold [G] again that day.  He is a wonderful father.  He was torn between the hospital and school and home and managed to balance all three and still have enough time to soothe my worries.  I think they're both smiling:

That day I saw little boy flatline.  There are little windows between the rooms so that nurses can watch two patients at once.  I heard alarms, and looked through.  I saw the little boy's eyes roll back and his limbs fall limp.  The doctor was giving chest compressions and calling out to others, never taking her eyes off the monitor.  In a moment, there was a swarm of scrubs in the room and I looked away, wanting to give them privacy.  In the hallway, I found the patient's mother by herself, unable to go in.  She rocked back and forth with her eyes closed.  She kept asking if he was okay, and no one answered; no one knew.  She prayed to God.  I gently rubbed her shoulder and waited.  We hadn't met before.  My eyes blurred.  They got his heart going again, and he pulled through.  She came to visit later.  She thanked me for being there, for hugging her.  She said she only realized afterward that someone was there and guessed it was me.  I'm glad I didn't see a mother lose her child that day.

That night was one of the hardest.  [G] was having a complication that meant he wasn't allowed to eat.  But he was hungry.  He cried softly, in resigned, confused whimpers.  The hospital felt cold, freezing.  Was I running a fever?  I tucked him into a hat, and sat next to his bed with a blanket draped around my shoulders.  He couldn't sleep.  If he drifted off, his empty stomach would lurch him awake.  The halls were quiet, the hours long.  Sometimes I read online while I pumped, to stay upright.  It was a bad night for me to be reading blog posts about the joys of breastfeeding.  What would I give for the ability to calm my baby with a bit of formula ... or to pick him up and sway him gently ... to walk him down the hall and lull him back to sleep ... We stayed up all night.  I did have one soothing trick left.  I could still sing to him.  So I sang quietly; I stroked his forehead with my thumb; I glided a pacifier across his lips.  I played the song Hallelujah, by Jeff Buckley and he calmed down, listening intently.  It was as if the song helped him understand.  We listened to that song over and over in the cold empty room (okay, not quite empty, his awesome nurse was right outside).  Two months later, I would play the song again and [G] would burst into tears with sudden, inexplicable emotion.  It was a heartbreaking night for me.  I can think of few things worse than a mother having to watch her children starve.  

For some reason, that night also made me feel close to him.  Perhaps the sad memories are also the ones we end up cherishing the most.  

8/2

The hospital was home.  We tried to make it as comfy as possible.  I put a family picture in his bassinet to give him something to wonder about.  The kids contributed their artwork. 

He made progress, and the cords gradually started to come out as they were no longer needed.

My mom and dad were in town taking care of the kids, who were having a blast.





The kids played hard.


The baby was able to drink breastmilk again, though this time we battled with nipple confusion.





We figured out a use for that nasal cannula.



Finally, they let me hold him again and nurse.  The first time, it took forty minutes to get him to latch on (I was so worried that he wouldn't remember how; after all, he had only had one feeding in the delivery room) and it wore him out so much that we had to switch back to the bottle.

8/3

The CVICU determined he was well enough for a lower level of care, and so they moved him to the 10th floor. 

[C] and [A] were able to hold him for the first time:

I was feeling homesick and so Mom spent the night with the baby.  I doubt she got any sleep.  I was grateful she was there.

8/5

They started trying to titrate him off his oxygen tank.

8/6

His oxygen levels kept dipping when they would decrease the flow of oxygen.  We finally realized when they changed a sensor that he was doing fine.  For the first time his pulse-ox read 100% on his own efforts.  That meant ... we could remove the nasal canulla!  Boy, was I happy to see his gorgeous little face again.  

8/7

    They were able to remove his bandages and his IV.  At last rounds, I took this picture of Dr. Knott-Craig and Dr. Kumar:

It was a happy kind of goodbye.  I'll always think of them as extra fathers.  What love I have for these two surgeons!  


Everyone was thrilled to see how well the incision had healed.  He is left with a very subtle but endearing scar.


1. 


Doctor Kumar was the one that stitched him up. He did a fine job, and everybody thinks so. 


I ate my last "lactatin' momma" meal (the hospital food was free for me and brought to my room.  It was actually delicious).


Before discharge, I took my dad to the airport.  I felt remorse at the thought that we'd wasted his whole visit in the hospital, but on the other hand I certainly had a lot to be grateful for.





[G] was discharged 13 days after birth.  We left the hospital with my mom and all three of my children and drove home.  And then we turned around and drove right back to the hospital because I had forgotten his medication.  


At home, we laid him on the quilt my mom had made for him and spent the rest of the day just gazing.













Mom stayed to help a little while longer.  "We" quilted (that is, she found the quilt top Paul and I had abandoned 6 years ago, figured out what I'd done wrong, and fixed it for us.)  My mom's amazing.

We had a wonderful visit with Paul's parents too, who flew in just before my Mom left, just in time for a baby blessing at home.

It was really helpful to have them there.  We had lots of doctor's appointments to attend, but we had fun too.  

For Dad's birthday, we picked up City BBQ and Muddy's cupcakes:

 

I have very happy memories from watching Toni and Stephen play with our kids.  They played soccer, built trains, played with the dollhouse, and napped.

8/21

Mom and Dad left and we started meeting weekly with our homeschool Co-op.  It was time to face real life.  I would learn that I never really would "get used" to having three kids.

At 8 weeks, we could handle [G] normally, because his sternum was okay.

We found out he had Torticollis  to the left side, treatable through physical therapy for 6-18 months. (He had a resulting skull deformity occipatal, + plagiocephaly on right occiput.  You can still tell his ears aren't on straight.)

At 3 months, we could take him off Lovenox injections.  The bruises were at times so bad we ran out of places to stick the needles.  He received hundreds of shots his first three months.  (I tried that argument with my three-old when it was time to get the flu vaccine; it didn't help.)  His blot clot did not clear out as we had hoped.  We call it a "souvenir."  He spent months receiving aspirin therapy and was believed to be at risk for Reye's syndrome.  We stayed home a lot.  Our pediatrician said, "don't take him to church, to Kroger, to the store, to day care ... anywhere where there are people ..."  Oh, well, there are worse things than staying home with a healthy newborn, right?

In February (at 7 months), the cardiologist told us that his heart is functioning perfectly.