In good hands

7/27 Day 2

     Light from the window invited in the day.  My singular goal: to be discharged as soon as possible.  My awesome doctor stopped in to check on me, even though it was early on a Saturday morning.  I signed discharge paperwork while Paul went home to shower.  

      The kids were being magically taken care of.  They spent the night at Kelsie's: we are so grateful to her.  Word had spread by then, and we were overwhelmed with love sent from others (without being overwhelmed with messages, thanks!).  My cognitive and social abilities were blurry at best, and I noticed with relief that the vast majority of correspondence was being sent to Paul, to let me rest.  That in itself was a sweet gesture.  

      Our friend Sarah did more for us in the upcoming weeks than is quantifiable.  I could hardly wish for a truer friend. 

Sarah, surrounded by kids

Sarah has a gift for seeing the nature of the need.  In our case, she immediately acted on what we needed most: to make arrangements for [C] and [A].  When she visited later that day, I remember her telling me that we were not to worry about them, and I knew I didn't have to.  A weight was lifted and I felt so much less scattered, less distracted.  She coordinated all the service that was given.  I know it must have involved a great deal of phone calls and texts and emails (not to mention the babysitting, cooking, cleaning, shopping, and visiting that she did herself).  To this day, I don't even know who watched our kids while I was at the hospital.  I trusted that they were well-taken care of, and they were.  Occasionally, I would ask Paul, "who has our kids right now?" and he would say, "uh, I don't know.  Sarah's taking care of it."  So, thank you to those whom I know helped with child care, (Valerie, Susan, Sarah, Kelsie, Lindsay, Cami, Amy, Carrie, Marie, Skylar, Madison, Alicia, Debbie, Paige, the Longshores, the Martineau's, my parents, and Paul's parents) and thank you to those helped even though I was oblivious to it.  They had a blast, and in the few precious hours I spent with them scattered over the next two weeks, they seemed content, loved, and secure (not to mention nourished and bathed).  They'll remember merry-go-rounds, birthday parties, playing outside, toy trucks, petting dogs, painting, and macaroni.  

      That morning, Sarah had picked up the kids and taken them to a Pioneer Day activity.  I was discharged around noon and we drove the 25 minutes to Le Bonheur.  I was feeling great.  I didn't tear at all this time, so apart from getting a little dizzy rushing down that long stretch of hallway on the way to the cardiovascular intensive care unit (CVICU), my own recovery was steady.

We were so happy to be there, to see him again.  His corner room was large, with expansive windows on two walls.  The room with just his bassinet instead of a full-size bed made him look miniature by comparison.  The nurses welcomed us in and as soon as I saw him, I felt home.  I was where I needed to be.  It was wonderful to see him sleeping there.

For several hours, we just enjoyed his company.  I was able to take pictures.  The nurses would chuckle at his expressions.  He loved to put his fingers up to touch his face.  He always looked as if he were contemplating.  They called him "the philosopher," and I mentally rolled my eyes, because of course, that's exactly the characterization his mother would wish for him. 

The nurses were wonderful in the CVICU.  Lynda had drawn a nametag which hung above his bed.  I never told her how comforting it felt to arrive and see that someone knew his name and had been mothering him. 

We also met Kari that day.  Everyone was so easy to talk to.  They were very good at what they did.

Later, we would meet Kayla, Brianna, Dorothy, Laura, Morris, Lauren, Kristin, Lucy, Ashley, Rachel, and Christy, as well as others.  I thought that I might feel jealous of these caregivers, who were with him when I couldn't be, who knew how to comfort him when I didn't . . . but I was surprised at the way the role of motherhood (or fatherhood, in Morris's case :) simply stretched to include them.  

Laura

[G] is a giant 6-month old here because this picture and this picture was taken at the Heart Institute Reunion much later.  Le Bonheur invited the patients and their families back.  We were able to see so many old friends.) 

Rachel (Again, this picture was taken at the Reunion.  [G]'s nurses were so kind.  I could not believe how many remembered him.)

Brianna (This was taken at the Reunion.  Brianna was guarding his side the night he needed the balloon procedure, but I'll get to that later.)

[G] had many watchful eyes and tender voices.  They checked on every unusual beep, detangled his cords, and cooed "I'm sorry, I'm sorry" in earnest, indigenous tones whenever they had to prick him or pull off a bandage.  When we were in the CVICU, there was a nurse at his side (or watching his monitors from just outside the room) all the time. I learned quickly not to be alarmed when an alarm blared red (which happened every few minutes), because it almost never meant that something was actually wrong.  I also learned that even though I wasn't alarmed, the nurse would be there in seconds to get to the bottom of it.  The nurses were amazing.  They expertly explained the medical details of his care, but could also be an emotional support to a crazed parent.  I spent a great deal of time talking to the nurses.  After all, I was sleeping on the couch, walking around in pajamas, brushing my teeth down the hall ... their workplace converged with my hotel room.  They humored my nervous chatter and my shy questions.  They would often become close to patients there, and I suppose it must be difficult to give those babies up to their parents when it's time to go home. I often think that [G] probably wonders where his other parents went to ...

I tried to help when I could. I watched him drink formula from a bottle.  They would have gladly put breastmilk in it, but the pump had been dry every time.  I would jump in and offer to change the diapers, which then had to be weighed for their records. It made me feel like I was doing my part; I wasn't completely useless.  He sprayed down at least three nurses and Paul during his stay, but I managed to dodge the line of fire.  

This may be the best picture I took of his chest, which we knew would never be so smooth again:

I kissed it a lot that day.

The doctors visited, making sure we understood the treatment plan, the defect, the emergency procedures that might be necessary, the surgery, and possible complications.  One of them even drew detailed illustrations on the whiteboard, which were right up there with Frank Netter's.  The first Cardiologist we met was Dr. Alexander, who happened to be Mormon and whose kids I had played with a few weeks prior at our children's book club.

  I met one of [G]'s surgeons, Dr. Kumar, who is simply wonderful.  I remember the way he would look at me, to ask if I was okay, or to ask if I had questions. 

Taken at the Reunion 6 months after surgery.) 
He really really cared.  I saw him a few times every day.  When he would examine the baby, he did it so quietly and gently you would think it was his own.  

The doctors explained how the Atrial Septum Defect (ASD) that [G] had along with the DTGA helped to mix his blood, essentially prolonging his life (and the reason his extremities were purple instead of blue). 

"In transposition of the great arteries, the aorta is connected to the right ventricle, and the pulmonary artery is connected to the left ventricle - the exact opposite of a normal heart's anatomy.

• Oxygen-poor (blue) blood returns to the right atrium from the body, passes through the right atrium and ventricle, then goes into the misconnected aorta back to the body.
• Oxygen-rich (red) blood returns to the left atrium from the lungs, passes through the left atrium and ventricle, then goes into the pulmonary artery and back to the lungs.

Two separate circuits are formed - one that circulates oxygen-poor (blue) blood from the body back to the body, and another that recirculates oxygen-rich (red) blood from the lungs back to the lungs. Other heart defects are often associated with TGA, and they actually may be necessary in order for an infant with transposition of the great arteries to live. An opening in the atrial or ventricular septum will allow blood from one side to mix with blood from another, creating "purple" blood with an oxygen level somewhere in-between that of the oxygen-poor (blue) and the oxygen-rich (red) blood. . . The "purple" blood that results from this mixing is beneficial, providing at least smaller amounts of oxygen to the body, if not a normal amount of oxygen. "

The ASD was "kept open" by medication, without which, we would have been in trouble.  They explained that even with the medication, the ASD might close, and if it did they could do a balloon procedure to buy some time before the surgery on Monday.

This is Memphis from the window on the 11th floor.  We could see quite a view from our room.  It was a strange, otherworldly sort of life up there. Perhaps the view helped us maintain some perspective. 
Paul went home that night.  We were both missing our other kids.  I continued to pump every 3 hours, throughout the night despite the fact that when I was done pumping, the equipment was still dry.  It was strange to wake up to my phone alarm instead of a baby crying: mechanical and impersonal and temptingly unimportant. I fought to get up, but when I did, there was a baby there, swaddled and sleeping and mine. The beeping of the heart monitors soothed me back to sleep.