Adam's Heart - Part 1

Dear Adam,
Today you are three weeks old.  Yesterday we brought you home from the hospital after a two week stay for your heart surgery.  Your Daddy and I want to write down everything we can remember from this experience, as it is the beginning of your story.  And we want you to know it because you will clearly not remember it.  You have had so many people praying so fervently for you during the last two weeks, we want to share this story with them too.

I will continue your birth story shortly, but we were discharged from the hospital early after you were born - just over 24 hours!  The pediatrician detected a heart murmur, but thought it was just a normal duct (the PDA) closing.  She ran a couple of tests to ensure there weren't any apparent heart issues, and said she felt comfortable discharging us since we had plans to see our normal pediatrician (Dr Allison) a few days later.  At your follow-up appointment (this was on a Monday, when you were 3 days old), Dr Allison did not detect the murmur, so we thought the PDA had closed and that was the end of the story.  You were, however, getting a bit yellow, and your bilirubin test did have relatively high results (15.8).  Dr. Allison wasn't concerned and thought they would start to decrease.  He told us the level at which they start addressing bilirubin levels was 18-20.  I was a bit anxious, though, as the 15.8 seemed too close to the "limit" --- how would I know if it was continuing to go up?

I watched your color very closely over the next couple of days, and decided to go back to get your bilirubin level tested again on Wednesday (5 days old).  It was starting to decrease (12, I think?), so I was reassured.  I also mentioned to Dr. Allison that I thought you looked a little gray around your mouth sometimes, but he sort of just shrugged and didn't make much of it.

Thursday (6 days old), you slept quite nicely for the first time in your bassinet in the morning, so I enjoyed a few extra minutes in the shower and organized a few things in the bedroom while you slept.  The day was mostly uneventful, except for you seemed to be breathing rather heavily from time to time.  At one point, Grandpa asked if I was bouncing you, as your body was jostling --- but I was not, it was just from you breathing heavily.  I found out later that Grandpa and Daddy both witnessed this on Wednesday night, too, but didn't think much of it.  I decided to just keep watching you, as I was embarrassed to call the pediatrician again, since I'd just come in the day before for the extra bilirubin test. 

Daddy had gone back to work that morning (a morning/afternoon double rehearsal).  Benjamin was at the Mad Hatter Arts camp, so Grandma and Grandpa went to pick him up at 2 PM, and brought him back home before heading back out to pick up Katie from Saint Andrews to take her to her swim lesson.

After Grandma and Grandpa left, I let Benjamin play some Wii while you and I snuggled on the chair.  I also leafed through the "Baby Care" pamphlet that we were given at the hospital and read through the "call the doctor if..." section.  It stated heavy breathing (retraction), which you were doing now with some increased frequency --- I could see your belly rising and falling with your breaths.  It also said more than 60 breaths per minute.  I checked my watch and your breathing rate was about twice that rate.  Another warning sign stated "blue around the mouth" --- which I had been noticing from time to time over the past few days.  I got a little nervous, and decided to call a nurse to just check that Adam's signs were okay.  When I got the call back, the nurse told me that Adam's "symptoms" were probably normal, but I should come in and get him checked out just to be sure.

I wanted to see a different pediatrician, as Dr. Allison always seemed to think everything was fine, and I wanted a second opinion.  There were a couple of other pediatricians in the office that we liked, but none of them had availability.  The only available appointment was with Dr. Cook, a pediatrician we had never met.  I scheduled the appointment - the last available for the day at 3:40 PM.  But now here I was at home with you and Benjamin and no car.  I called my dad and asked if he could come home and pick me up while Grandma stayed with Katie for her swim lesson.  I then asked Benjamin if he would like to come with us to the doctor or go next door to play with his friend Jackson.  He opted to go next door, so I called our neighbor Tara and asked if Ben could come over for a couple of hours while we went to the doctor.  She agreed, so shortly after Grandpa got home, Ben ran next door excited to play with his friend.

Grandpa and I rushed out as it would be difficult to make our appointment on time.  I called Daddy on the way to tell him we were going to the doctor.  He was just finishing up his rehearsal at this time.  He suggested he go pick up Katie and Grandma from her swim lesson, but I wanted him to come to the appointment with me, so I asked him to meet us at the doctor's office instead.

Grandpa and I went up to the waiting room, where Daddy met us shortly.  Grandpa headed out to pick up Grandma and Katie while Daddy and I met with the doctor.  He listened to your heart and reported that he did hear the murmur.  But when he listened a second time, he did not hear it.  We talked about the grayish color around your mouth, which he thought was mostly normal --- but it did change back and forth --- and at one point he mentioned it was a little too gray for his comfort.  And at this point, you were doing your heavy, fast breathing with increased frequency.  Your heartrate was pretty fast too, somewhere around 175 bpm. He and his nurses also tried several times to take your blood pressure - it was difficult to take on such a little tyke!  I do not know really what the readings told him at the time.

Dr. Cook talked briefly about our options --- he was considering sending us to the ER, but it was now past 5 PM, and he wasn't sure whether we could see a cardiologist that night, so we might go home and wait to see a cardiologist the next day.  He called Texas Children's Hospital to speak with a cardiologist, and he came back recommending that we take Adam to the ER.  I think he and the cardiologist were having several discussions --- it seemed he was back and forth in the room a fair amount, but at this point the series of events becomes a little fuzzy.  He came back in the room and was trying to decide whether we needed to send an ambulance to pick us up, or if we could make the drive to the ER.  He decided we could drive to the ER, which was not far away.

It all seemed so unreal at this point.  We drove to the Children's Hospital ER and pulled up to the valet.  We checked in at the desk, and they had our information since Dr. Cook had called it in.  We were able to wait in a nearby area and not have to go to the general ER waiting area.  That's where I had my first good cry.  I just held you and began crying over the intensity of all this.  The kind woman sitting at the reception desk noticed and brought me a box of kleenex and said something reassuring along the lines that we were in the right place and they were going to help you.

We only had to wait a few minutes before we were escorted to Triage.  They took a number of your vital signs, and the two triage nurses were very upbeat and encouraging.  They told us about all the symptoms you were showing --- and that they could all individually be normal --- but since they were paired together, it was good to get checked out.  So at this point, we were still hopeful that there was indeed nothing wrong!

To be continued...