Day One Addendum

Today is actually March 26th.  I realized while looking back at my blog that I never really included the details as to how James was diagnosed with 3 congenital heart defects and those moments before we were transferred to PCH to prepare for open heart surgery.  At the time, I think my heart and feelings were way too sensitive and tender to relieve that experience.  I would however like to record this for journaling purpose, and so James can one day know how his journey began.  This will be hard for me to write....I am in a good place now, but preparing for James 2nd open hear surgery, and emotions are still tender as I consider how similar or non-similar this second experience will be to the first.  My goal is to see how much better things will be this time, especially based on what we learned the first time around.  We love James regardless-I can deal with all the hardships and emotions that come with congenital heart defects, as long as we get to keep James-which we intend to do forever. 

It began on December 10th officially.  The pediatrician on call was doing her standard check ups and discovered a light heart murmer.  Nothing to be terribly concerned about-this is somewhat normal for newborns and generally rectifies on its own.  On December 11th, the pediatrician was clearing James for discharge at noon-I was packing my bags, prepping the bathroom to take a shower before discharge, expecting everything to go as planned.  The pediatrician said she was still hearing the murmer and just to be safe, wanted to do an ultrasound to make sure everything was okay.  That was a bit of a red flag to me, but she sounded so calm-like it was a run of the mill thing to protect the hospital from any liabilities if something did end up being wrong.  They came and took James for his ultrasound at 12:30; I continued packing, laid out shampoo and soap in the shower, and started to eat lunch until James returned.  I was looking forward to going home and bonding with James in the comfort of my own home.

The pediatrician returned to my room around 1:00pm.  James was not with her.  I thought at the time he was probably on his way down, perhaps the nurse was just re-swaddling him before bringing him back. I thought maybe the doctor just wants to consult with me-tell me everything is fine-before she heads to her own lunch break.  She sat down next to my bed and had a piece of paper and a pen in her hands.  That was my red flag.  She started off slowly, telling me she found a problem on James' ultrasound.  I stared at her as she began to describe the hole in his heart and the narrow portion of his aorta.  It struck me that she was so young, probably younger than me.  She drew a picture for me to illustrate the 2 problems she thought she was seeing.  She wasn't uncertain-she was sure of what she was talking about.  Her voice trembled though, and I found msyelf thinking, she probably doesn't like this part of her job-telling parents there was a problem with their perfectly formed newborn.

I kept waiting for her to say "....so we'll just watch this for the next few weeks, make sure to have your own pediatrician monitor it, if it gets worse we'll prescribe an antibiotic to take care of the problem." That's all my experience has told me to expect.  At some point, the pediatrician paused and said to me, "Its okay to cry."  thats when I realized I already was crying while pondering how young she looked-as if a part of me realized what was happening, and another part was refusing to acknowledge that something was seriously wrong with James.  That second part jumped up to speed at that moment and I understood:  James' heart is going to struggle to keep him alive unless we intervene.  I immediately asked "Where is he?"  I repeated it over and over, and the crying was getting worse.  My thoughts were all of the sudden in a complete disarray except for the need to go get James. 

Moments later my nurses came in and started throwing everything into my bag.  Somewhere the pediatrician told me James had been rushed to the NICU in the hospital and they were preparing him to be transported to PCH.  I zoned out, grabbed my phone and walked out my door before realizing I had no idea where the NICU was.  My nurses tried to get me to sit in a wheelchair.  I declined, picked up my duffle bag that they had thrown together and asked if we could just go to the NICU now.  I don't remember much about that walk except calling Jared at some point.  I told him something was wrong with James' heart and he needed to get to the hospital right away.  Beyond that, I was just a mess of tears.  We got to the small NICU and I hesitated.  I didn't know what to expect-would James already be covered in tubes? Would be he be asleep?  Would he all of the sudden look sickly and on the verge of unconsciousness?  I tried to get ahold of myself as I walked in, only to see James laying on the bed wide awake, staring up at the bed warmer as the nurses decided which hand to put an IV in.  He looked so normal-I couldn't conceive that his heart was anything but.  I found myself frantically wishing I could go back to being pregnant.  He was safe in my womb, right?  I could keep him safe, must more easily than tubes, bright lights, doctors, surgeons, surgical instruments....it was all I could do to not rush over to his side, pick him up, and carry him out of the hospital. 

Those were hard moments.  Jared wasn't there yet and I was in a mental panic.  The nurses didn't want to talk to me much at all-they were caught up determining how to get a good line in him, how much meds to put him on, if they should try to do an umbilical line, etc.  One nurse in particular seemed like a know-it-all....she kept trying to redirect the other nurses, they kept disagreeing on things.  A part of my mind kept making mental notes about this, but I couldn't stop staring at James and holding his hand.  His skin felt too warm to me and I considered asking them to turn down the bed warmer.  Every few minutes I would tear up all over again and fail to contain my emotions.  I couldn't fathom how moments ago, I was holding James in my arms with no worries in the world-and now he was laying in the middle of a medical emergency.  I was scared to death that he was going to die right there.  That thought didn't seem to mesh with the image of a healthy baby that I had delivered two days earlier...my mind was utterly confused and in complete despair.  Someone handed me a box of tissues and it was at that moment that I realized it interrupted my prayer.  I didn't even realize I had been praying.

The cardiologist that was on call came in a few minutes later and sat down with me.  His name was Dr. Garn, and I was pretty sure he was LDS, though I couldn't place his last name.  He had a positive spirit.  It was nice to feel that in the midst of chaos.  He took a piece of paper out and began drawing a heart to explain and illustrate what he saw in the ultrasound.  It was then that I first heard the term coarctation of the aorta.  He explained that it was a narrow part of the aorta and it would interrupt blood flow if they didnt operate right away.  He also drew the whole in the heart and added a third condition that he had found:  a narrow aortic valve.  I was so overwhelmed.  It wasn't just one or two issues-it was three.  I remember thinking, how in the world are they supposed to fix THREE problems on a heart this small?  Dr. Garn for some reason still seemed positive and in that moment, it gave me a little bit of hope. 

Jared walked into the room a few minutes after Dr. Garn left and I fell apart all over again.  I gave him some details out in the hallway as best as I could.  I used the picture Dr. Garn had drawn for me and tried to explain the issues that they were seeing.  The nurses were putting a central line in so they told us we had to wait in the waiting room.  I did not want to leave.  I almost told them that to their face.  Jared steered me out the door though and we sat down in the small waiting room.  I realized then that I was in an incredible amount of pain... my medications had worn off by that point, and I was, after all, only 2 days post partum.  Since the nurses had discharged me, I had zero access to any help.  I was due to feed the baby but couldn't in case he would need to be rushed into surgery.  I knew I was still bleeding pretty bad, but didnt' really care.  Jared did what he could to calm me down as we waited for the nurse to bring us back in.  When a doctor came to do so, she told us she had seen tons of babies come in with this problem and be just fine.  It was the first time someone told us that.  I didn't know if I could believe her.

We got back to James and found him resting comfortably.  He had an umbilical line put into his belly button and the transportation team was standing by just waiting for permission from PCH to transport him there.  I had Jared call our families to update them-I knew there was no way I was going to speak clearly enough to make myself understood.  There were a few tense moments when the nurses were trying to decide what dosage of meds to give James in order to open a duct that would take the pressure off his narrowing aorta.  They were arguing about it and the ambulence team had to step in and tell them how much was normal.  I thought it was strange that James would be transported with no shirt on.  They asked if I wanted to ride in the ambulence with James and although I didn't want to leave his side, I felt so scared and I didn't think I could be separated from Jared.  I opted to ride with Jared behind the ambulence.  The transportation team finally loaded James into an incubator and onto the bed.  They wheeled him out the door promising to take good care of him. We grabbed our bags and took off the opposite way for the parking garage.  As we walked down the long hallway, I balled my eyes out.  We passed other people and I found myself wondering if they even knew, if they had any idea the world had stopped turning. 

As we drove to PCH, I wondered if James was okay-if I could even use the word "okay" to describe him anymore. It was so odd being discharged from the hospital after having a baby, but leaving without the baby-worse, going to a different hospital because the baby was in critical condition.  I have never been more scared in my life of losing something that I loved more than life itself.  I was overwhelmed with the thought of what was to come-and at the same time, I couldn't see beyond that hour, beyond just making sure James was still breathing at PCH.  I'm not sure when we said our first prayer together, but I know my heart was crying out to the Lord that entire time, just begging him to protect James and keep him safe while he endured this first challenge of his mortality.  Part of me still wondered if we would get to PCH and find everything was a false alarm-that James was really just fine.  Part of me wondered if we would get to PCH and find James in heart failure.  We drove faster as a result.

We had to go through the Emergency Room at PCH to get to the Cardiac ICU floor.  We knew exactly what room we were heading towards because it was swarming with doctors and nurses. We tried to rush into the room but couldn't enter right away because James had stopped breathing for a few minutes when they were getting him hooked up to all the machines.  He was stabalized moments later, but those few moments sent me to a new level of panic.  I could see him, was near him, but wasn't allowed to touch him or cradle him close to me.  Those few moments watching the medical staff stablize him broke my heart.  We were allowed into the room and once again the tears came as I held James' little hand and placed my hand on his belly.  I could feel his heart beating, could feel his chest rising up and down, sustaining life-the same sensations I felt in utero.  The monitors kept time with his heartbeat and Jared arm around my shoulders kept me breathing.  The doctors and nurses were fantastic-they explained everything, gave us hope, and reassurance.  We were still in the thick of it, and the road was long.  We knew that, even in our overwhelmed states of being.  But the tone in this hospital was different:  these people knew exactly what they were doing.  They lived it, breathed it...it gave us comfort in that moment and in the many that would follow.  It was 5:00pm. Live changes in the course of 5 hours. 

We were not sure on that day, in those moments, what we would learn or even what the outcome would be.  But we had to make a choice that day to trust the Lord.  In those moments before Jared got to the hospital, I knew I couldn't rely on myself, which I tend to do.  I couldn't expect to make it through this situation on my own strength, simply because it was depleted in a matter of hours.  I endured until Jared got there to hold my hard...but decided from then on I needed his support, and more importantly the Lord's....perhaps Jared needed my support to.  James needed all our support, and we were determined to give it to him, this little fighter of our hearts.  And so the journey continues, as does our trust in the Lord.


Post Dec 11th, 11:30 PM