Almost Losing My Baby to a Congenital Heart Defect...

I delivered Caysen via C section on Thursday, June 27th. He came out crying and hollering, making all kinds of racket. I had my friend in the delivery room to take pictures since Husband doesn't do well with blood and guts.

While the doctor was stitching me up and finishing, they brought my sweet baby boy over to kiss on the cheek. They mentioned he was having problems breathing and took him to the nursery. They told me I would not be able to get up for 12 hours and they would bring my boy in once he was doing better. They said he just had too much fluid on his lungs from being c sectioned out. Finally, 12 hours later at ten at night they mentioned that I could go in to see him and try and nurse. He wasn't going to be able to leave as they still wanted to monitor him and he was on and IV, so I spent the night going back and forth every three hours to see/feed him. All was well and he got to come to my room the next morning. I took care of him all day and all that next night in my room. At one point during that night when nursing he started breathing/panting funny. I called the nurse in to check him out, they took him to the nursery and again told me the same thing about his panting. It was related to the fluid on his lungs and using a supplemental nursing system as my milk hadn't come in yet. The SNS was causing too much liquid at once they said, and he was getting out of breath. I checked again the next day with the nurse, the lactation lady AND our pediatrician. All said it was normal and he was fine. 

Discharged home. That night he didn't sleep well, definitely didn't nurse well, maybe only once at night. Finally got him to eat around ten am. He started panting again. It didn't get better. I called his pediatrician, left a message. Called again and spoke to a triage nurse. She said get him in to ER or Urgent Care. Luckily I picked the ER. 

We got to the ER where they poked him at least ten times to try and start an IV. No luck. In our 45 minutes down there he was getting bluer, colder and began to cry a cry I had never heard before. An unmistakable cry of pain, a cry as his body was shutting down, but we still had no idea just how serious it was. 

They transported him to the NICU, and when they saw him they got to work right away. They came out after a bit to tell us just how critical he was. You could tell by the grave looks on their faces that he wasn't doing well. A nurse practitioner came out to chat briefly with us and then get consent for an umbilical arterial line, as they couldn't get stuff in him to save him yet. Ironically, the NP that was working and came out to see us? Was the same lady who was working the nursery at the other hospital where he was born three days earlier. She's the one who took him back to the nursery while he was having his breathing problems. She recognized us and was able to go back and share our story with the doctor without getting much history since she already knew it. Kinda crazy. 

They worked on him for a long time. The doctor finally came out to talk to us personally. She told us repeatedly, "he's very sick, he's a sick little boy". She told us they were doing tests to see what it was. Either it was a metabolic issue or heart issue is what she said. We waited while they ran tests and tried to reverse the damage of his little body shutting down.  His blood sugar was less than 4, newborns need 40-200. They had to start him on sodium bicarbonate to reverse all of the lactic acid build up. He  was out on a vent, monitors, with tubes and wires going everywhere. 

Finally the doctor came back to get us. she showed us how to scrub in. she took us back to his room where he looked so fragile and delicate. They sat us down with a cardiologist in the room while other nurses and doctors buzzed and frenzied about, charting on laptops, adding more meds, he was already on nine or ten. They tell us we can't touch him, he de stats. We stare at the baby we were just holding and cuddling a few hours before, unable to sort our feelings. 

The cardiologist begins to speak. She pulls out a paper on a clipboard and it has a heart on it. His little heart was broken and no one knew. Shock went through Chris and I, tears, anger, frustration, we ran the gamut of emotions while she explained to us the diagnosis. Hypoplastic Left Heart Syndrome. Our son was essentially born without a working left ventricle. What does this mean? What do we do? How did no one catch this my ENTIRE pregnancy? How did they not catch it at the hospital? So many questions, so much up in the air.

She explains he will need a series of three surgeries - all of which will take place by the time he is about three. She explains it will be a tough road but it is manageable. It is so much to take in. All the while, we are sitting in his little NICU room while nurses buzz about, doing lab draws, giving blood, chasing his stats to keep him stable.

Turns out his kidneys had no output. His liver wasn't allowing him to clot, his heart was all over the place working overtime and they were trying to keep his lungs from flooding - because his oxygen stats were 100 percent, the ER didn't realize that his lungs were overworking, but his heart was not getting blood out to all of his organs.

It was such a hard day. Chris and I left over 12 hours later, exhausted, emotionally and physically drained from all of the crying. To go from having a baby three days earlier to almost losing a baby three days later is something no one should have to go through. I can't even begin to describe how tough it was, and how it has been a steep and tough road since.

More to come...