Finding out Jack was sick

I had a perfectly healthy pregnancy.  My ultra sounds all came back great.  We truly had no idea our baby was sick.  I was nursing Jack in the hospital after I had him and I thought his breathing seemed odd.  Almost as if his whole body went up and down with each breath.  I asked the nurse if his breathing was normal and she assured me it was fine and that babies breathe differently while learning to eat.  I didn’t know to ask what his pulse ox came back at.  I didn’t even know what a pulse oximetry test was or why they taped that little red light to their little toe.  A pulse oximetry test is one of the most important test your baby gets.  It measures the oxygen in their blood.  This test is a red flag for a congenital heart defect.  Unfortunately not all states require it but our state does.  He failed his and they tested again and he passed with the lowest possible reading.  I had no idea.  I went home 24 hrs after having him.  Sometimes I am grateful for that week I got with him, my perfect little angel.  Before tapvr before the stress and worry.  But because he went so long undetected his little body suffered worse than it should have.

The few photos I have without his scar
At around 6 days old Jack started throwing up.  No big deal, my third had acid reflux.  I was ready to deal with it again.  His poop started to slow down and became a darker color.  I didn’t think much of it he was still getting used to eating and being out in this strange world.  On his 8th day of life he spit up and it was bright yellow.  I started worrying I called Ivan and said he threw up bile.  Then he threw up again.  I called my pediatrician and left her a message.  It was after 5 o’clock and she didn’t want me to go the whole night with out him being looked at.  She said I’m sure hes fine but I want you to take him to the closest children’s hospital and have him looked at.
We get to the children’s hospital, it is attached to the adult hospital and the emergency room is being remodeled so they are sticking the kids and adult all together in the waiting room.  I stand outside of the hospital with my tiny newborn baby.  Ivan checks us in and I tell him call me when they are ready for us.  My baby has acid reflux and they are going to send us home, I certainly don’t want him catching whats in there.  Ivan calls me in, they want to check him in and put a band on his wrist.  The lady asks me whats wrong.  I tell her hes thrown up a few times.  She asks to see him.  I’m hesitant, shes been touching sick people.  I pull the blanket down and hes looking grayish. She asks if he always looks like that and I said no.  My life then turned into a movie.  She rips him out of my arms, hits a button that sounds an alarm and flashing red lights.  Doctors and nurses go running into a resuscitation room.  They put an oxygen mask on him.  I can hear him screaming and I cant do anything to help him.  The Doctor is asking me what happened.  I have no idea, he’s not sick he doesn’t have a fever or a cough.  I haven’t had visitors that could have passed on their germs.  They tell me he has to be intubated, hes not getting enough air.  I can’t stop sobbing.  The pain of seeing your baby lifeless covered in tubes is indescribable.
The throwing up and slowing of bowels lead them to think something is wrong with his stomach or intestines.  Initially they test for pyloric stenosis.  They insert a dye into his stomach and wait for it to pass.  We waited hours and his stomach wouldn’t pass the dye into his intestines.  When your body is as sick as Jacks was it stops making blood and starts shutting down organs starting with the least important, the stomach.  We ruled out anything with his stomach and moved on to other things.  His lungs sound “crunchy” all the doctors say.  His lungs are sick and they tell us he has pneumonia that started as a staph infection.  How is this possible?  I didn’t let anyone come over, we weren’t sick.  How could he be sick?  Day after day he wasn’t getting better he was getting worse.  They retested for staph and it wasn’t showing up but he was still sick.  He never had staph, it was a contaminated specimen.  Six days of sitting in a hospital room by his side. Crying, praying, begging and pleading for him to get better.  He had so many x-rays, ultra sounds cat scans and nothing.  No answers.  I was in physical pain my heart physically ached as I sat there watching my baby slowly die.  I couldn’t hold him or comfort him.  I couldn’t feed him or change his diaper.  All we could do was sit, sit and wait for our prayers to be answered.

The entire week was horrible but the night before his surgery was the worst night of my life.  We still didn’t know what was wrong with him.  When you have a baby on life support they sometimes try to fight the machine. His little body would breathe against the machine.  Alarms would go off.  People would rush in, they’d tell us he was fine they just had to adjust the machine or his medicine.  But the last night before surgery he kept fighting the machine.  His oxygen levels would drop dangerously low, his heart rate would drop.  All night the doctors and nurses would come rushing in to the sound of alarms and try to stop him from working against the machine.  Nothing was helping.  They paralyzed him, laid him on his stomach and made the machine do all the work.

That next morning they had a cystic fibrosis test scheduled and while making the rounds his doctor said lets do an echo cardiogram of his heart.  At this point they had done so many tests I thought this one would come back fine just like all the others.  My three other kids were being cared for by our family and my oldest needed to go to the doctor.  Ivan told me to take her, I hadn’t left that hospital in 6 days and only seen my other 3 kids once.  I got to her school to pick her up and got a call I will never forget.  He said come back here now.  My heart sank, I thought he had passed away while I was gone.  The one time I left in a week and he passed without me by his side.  He said hes ok but we have to talk and make some decisions.  I raced back to the hospital, left my daughter at the nurses station and went to Jacks room.  The cardiologist told us Jack had infra cardiac TAPVR.  The veins that should attach to the left side of his heart and carry the blood back, attached to his liver.  The left side of his heart wasn’t receiving blood.  He was air-evaced to PCH while we drove over.  As devastating as it is to hear that your son needs life saving open heart surgery after a good hour of crying as they prepped him to be taken I felt at peace.  My prayers were answered, we finally knew what was wrong.

Jacks Birth

Monday April 15 2013, I remember it like it was yesterday.  Tax day, the day of the Boston bombing, the day I brought my 4th sweet angel into this world.  Im not normal, I don’t go into labor on my own.  At least not until I had Jack.  I had become somewhat of a joke to those who know me.  Ive gone all the way up to 14 days late with my second baby.  I wait as long as my midwife lets me then she strips my membranes and finally a few days later I get to hold my newborn baby.  I was 8 days late with Jack and started to have labor pains Sunday night but couldn’t believe they were real.  This has never happened.  Sure enough they were.  When I got to the hospital I was a 6 1/2.  I move quickly and before I knew it I was ready to push.  This was my first time without an epidural but there was no time for one so pushing this baby out was my only option.  It was truly one of the most amazing experiences of my life.  My midwife told me to reach down and pull him out and I did.  I set that baby right on my chest and instantly fell in love.

I knew from that moment something wasn’t right.  It wasn’t anything I could see.  It was what I felt inside.  I kept thinking this is just my hormones.  I hate the baby blues.  I couldn’t shake the feeling.  I felt like I didn’t have time with this baby.  I enjoyed every second of him feeling like he wouldn’t be mine for long.  I remember telling my husband to sleep, Id take care of him.  I didn’t want visitors.  I didn’t want anyone taking away the time I did have with him.  He was such an easy sweet baby.  Slept the day away in my arms.  That first week home from the hospital is one I will forever cherish.  Its the only newborn stage I had with him, the only memory I have of his beautiful little body before the scars.  The next three weeks were taken from me.
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