Wolff Parkinson White

We found out Jackson has Wolff Parkinson White when he was 11 days old, the scariest day of my life.

He was very sleepy all day Wednesday, but I chalked it up to being early and a newborn.  That night, he started throwing up a lot.  This made me more nervous, but I did't know really how to tell what was normal baby spit up and what wasn't.  I should have gone straight to the ER, but instead we went to sleep.  He had trouble latching all night long.  He just couldn't get on to eat.  He would barely take a bottle of pumped milk either. 

On Thursday morning it was obvious that he was very sick.  He could barely keep his eyes open for a minute.  He seemed cold to me.  When I went to change his diaper, his hands and feet turned purple for a split second.  I thought he must have a low temperature, so I checked, and it was 96.5.  I tookoff both our shirts, grabbed the phone, and put him under several blankets on my chest while I called his pediatrician. 

I told them what was going on, and they said to bring him in right away.  At this point I thought it was just a bad stomach bug, and I'd feel like a stupid paranoid first time mom.  At the same time I really felt that something was seriously wrong. 

When we got there the doctor looked at him and brought in a pulse ox and an 02 tank.  We didn't think the pulse ox was reading correctly, because it kept flashing 280s, 290s, 300s.  The nurse and I laughed that if his pulse was really that high, he'd be in trouble.  His oxygen was between 80 and 85%.  The doctor thought he must be septic, but since he'd had no other real symptoms, she really didn't know what to think.  She admitted him on the spot to Sarasota Memorial. 

We drove straight to the hospital and got into a room, where the nurse proceeded to tell me that his temperature was normal and maybe I just shouldn't have the AC on so high, and he looked just fine to her.  She also couldn't get their pulse ox to "work."  Finally a doctor came in and listened to his heart during his exam.  This made the shit hit the fan.

He thought he heard a gallop, which would mean that his ductus arteriosus (lung bypass hole in fetal hearts) hadn't closed properly.  He couldn't rule out infection though, so he wanted to get all kinds of cultures to make sure he wasn't sick. 

They brought us to a treatment room, and stupid nurse was trying to cath him to get a urine sample.  Of course he's screaming, because they kept MISSING.  (How do you miss a male catheter? The world may never know.)  After 3 tries, I asked if they at least had some sucrose (aka sweet eze, baby crack) to help him calm down and not hurt so much.  What do you know, they got it right after the sugar went in.  The pulse ox was still fluctuating between 60 or so and 300.  The doctor comes back in and they decide not to do a lumbar puncture (good decision #1) but he needs to get in an IV.

Getting in the IV was one of the most traumatic experiences of my life.  I can't even imagine how terrible it must have been for him.  Stupid nurse tried 3 times before some other good nurses came in.  Still, they have poked every vein this kid has, and nothing is taking.  Between being very dehydrated and about 37 weeks gestation adjusted, Jackson's veins were just about impossible.  They must have tried at least 30 times before a NICU nurse came down and got the IV in a scalp vein on the first try.  This of course is after the drilled a hole into his femur to try and get a line in that way.  They got into his bone, but the line didn't take.  I couldn't watch that.  Christopher did, and he almost passed out. 

So at this point, they've told us he's in heart failure, but that they don't really know why.  There were about 5 doctors, 5 nurses, and 3 respiritory therapists standing around my tiny little boy.  It was about 90 degrees in the room to try and keep Jackson warm, but he still had to be on a heated transfer pad and wrapped in blankets on as much of him as they could. 

About this time they told us that Jackson would be transferred to All Children's Hospital's Cardiovascular ICU (CV ICU) in a helicopter.  Because he was so unstable, they intubated him for the flight.  Hearing the helicopter landing on the roof of the hospital and knowing it was for him was horrifying.  I couldn't fly with him, which doesn't bother me at all because I'd much rather have trained hands than mine with him.  We drove up to St. Pete with Christopher's parents, and even though we had stopped to get me a shirt and some food (It had been hours since I had fed Jackson by then, and with that and the crying my whole shirt was completely soaked.  Also, no one had eaten) we still beat Jackson there. 

We had to sit in a waiting room to wait for the helicopter to arrive.  We heard it land, but we didn't see him come through.  Finally a nurse came to get us, and we walked into another scene worthy of a tv show, with lots of nurses and doctors standing around Jackson's isolette.  He had a ventilator, a heart monitor, temperature monitor, and IVs all connected to him.  There was more tubing and wire than baby. 

Apparently after we left, the transport team recognized that he was in supraventricular tachycardia (SVT), and told the Sarasota Memorial people, who were able to give him adenosine to stop the episode.  So when we saw Jackson, he had a normal heart rate and his oxygenation was much better.  The intensivist/cardiologist in the CV ICU explained what was going on with pictures drawn on a white board.  It was bizarre how calm he was, and how relatively simple the explanation seemed. 

As he was describing the possible causes of the SVT, Jackson had another episode.  The monitor buzzed, flashed EXTREME TACHY, and the doctor walked over, calmly drew up the adenosine, and watched the monitor for the brief flatline that means it worked.  Jackson's heart went right back to normal.

We were in the hospital for about 5 days, watching for more episodes, starting medication, and weaning him off the ventilator.  That was the worst part.  He couldn't have pain meds because they wanted him awake enough to breathe on his own.  He cried and cried and cried, but you couldn't hear it because of the ventilator.  We had to watch our little baby cry without being able to make as sound or being able to hold him. He couldn't eat for 3 days.

We finally got to take him home.  We went to Christopher's parents house because I was worried about being alone if Jackson had another episode.  We stayed there until the next episode on Saturday morning, when we got to go back yo the hospital.

Since then he's had around 16 episodes and spent about 6 weeks in the hospital.  We have a favorite room, the nurses know us by name, and they love tosee how big Jackson's getting.  We've been out of the hospital since just before Thanksgiving.  I never want to go back again!