If you haven’t read Part I or Part II of this NICU story, I’d start there.
We left off after I sent everyone away.
I had been “compassionate care” transferred. We were in my hospital room. Me with my hospital bed. And my husband with his cot.
My husband was my absolute rock. He always said the best things. The right things. Even when he probably didn’t feel like saying the right things.
There was no sleep that night.
Around 2 am, our room phone rang. I answered it. It was the NICU. My baby wasn’t being supported by the ventilator. They were manually bagging him so he could breathe. A person was breathing for him. They wanted me to know. Things weren’t good. They would keep me posted.
I forget now how many times the phone rang. At least 3. There were several instances of my child being supported by a manual breathing mask. He was finally back on the vent though.
The next morning, we went to the NICU first thing. I was in a hospital gown and a robe. My husband wheeled me up in a wheelchair. We were met at the NICU by a physician and a PA and were asked to come to a conference room to talk.
Let me tell you something. If you are escorted to a private room to talk to a doctor, things are not good. Things are very very very bad.
I’ll never forget my helpless self sitting in the wheelchair looking up at the physician standing above me. The PA standing with her back against the door, looking down, with a great heaviness across her face.
He told us our son was very sick. He told us while he was the biggest baby in the NICU, he was the sickest. The odds he would even live were slim. He was diagnosed with PPHN (Primary Pulmonary Hypertension). You may have heard it called “persistent fetal circulation” in the past.
He told us the next steps. They would add nitric oxide. If that didn’t help, they would move on to ECMO.
That’s when I broke down. I knew what ECMO was and I knew it was our last ditch effort to save my child’s life. I felt utterly and completely alone and broken.
He also told us if we were religious people, and wanted any baptism, prayer, or intervention, we should do it. While we could.
We went on into the NICU once we got ourselves together – and there he was.
Close your eyes and picture a 7 lb baby: ventilated, belly down on a pad of cotton, muffs over the ears and eyes. Just lifeless. He had two chest tubes. (He managed to have bilateral collapsed lungs as well.) He was on so many drips – dopamine, dopbutamine – medicine names I can’t even recall. He had parental nutrition – which means he was fed only through his PICC line. Imagine that. Imagine that as your child. It was heartbreaking.
And I still couldn’t touch him other than very minimal contact. There was no stroking allowed – it was too stimulating. If I wanted to touch him, it was with just a few fingers and they shouldn’t be moved.
We called our priest. We had the baptism that day.
I will continue with the final part four next week. (It’s almost birthday week.)
Edited on 7-29-18.
I decided not to finish this series.
Apologies if you wanted me to. I decided it is too painful and I wasn’t sharing with you the deepest and darkest feelings and emotions.
What I can tell you is that after the baptism, he did finally turn the corner. We had a lot of small victories, and some setbacks. He finally left the NICU after one month. It was the BEST day of my life. He is now 9 (tomorrow), and in perfect health!