This article is a continuation from Premature Heartache - Darkness before Light

The lighting in the multipurpose room of the NICU was soft and inviting, and it felt kind of like my grandmother’s living room dimly lit at night from when I was a kid. It’s weird the things you notice when you’re sitting in a room, waiting for news that you don’t want to hear.

Lori and I sat there for more than an hour, while the doctors, nurses and other medical staff worked on resuscitating Caitlin and stabilizing her. We saw a respiratory staff member walk by the room toward Caitlin’s area, so we assumed that she would be getting some sort of artificial assistance with her breathing.

We assumed a lot of things while waiting in that room, and it was difficult not to allow doubt to seep into our minds about how this whole thing was going to end. What is a normal reaction to seeing your baby turn blue and stop breathing though? It’s easy to say, “Be positive” or “Don’t worry;” however, it’s a lot harder to actually do those things when you’re in the situation, especially if you’ve seen the worst case scenario before like I had.

Finally, the doctor came to give us an update. Caitlin was stabilized. She was sleeping now, and breathing with the assistance of a ventilator. The doctor said that the apnea was most likely caused by the Fentanyl working a little too good - it relaxed her so much that she forgot to breathe.

Apparently, it is not uncommon for this to occur, even though it is statistically infrequent. She said that if Caitlin’s pain continued that they would cut the next dose in half and monitor her reaction closely.

The thought that immediately popped into my head was next dose? Next dose!?! WTH! Don’t make me pull an Allen Iverson up in the NICU! Practice? Next dose? We’re talkin’ about practice! Next dose! How silly is that? Next dose!?!

We thanked the doctor for the update and asked if we could go back and see her. She said yes, but that we really needed to let her rest. The next 24-48 hours were going to be very critical for her, and they didn’t want anything to further complicate or agitate her situation.

Every problem that arose increased the chances of her intestines rupturing, which would require immediate surgery and could be potentially life-threatening. According to Dr. Beverly Wood on eMedicine, “The mortality rate of NEC is less than 20% when infants with NEC are identified and treated early in the illness. Without treatment, the mortality rate is extremely high.” If large lengths of bowel need to be removed, then it could also result in short bowel syndrome.

As we walked over to Caitlin, several of the nurses came over to encourage us and let us know that everything would be alright. She wasn’t blue anymore, but it was still hard to look at her. She had a ventilator in her mouth, which required a special head strap to keep it in place. She also had a mask on to protect her eyes from the bilirubin light that was under her back; and, she had the nasogastric tube, PICC line and all of the monitor wires attached to her like before.

Lori immediately began to cry. To be honest, I couldn’t look at her (Lori) without feeling like I was going to lose it too. I didn’t want to lose it there - not at that moment anyway - I wanted to be strong. I couldn’t hold back entirely though, so I asked the nurse if we could close the curtain around the space to give us a little bit of privacy with her. She said yes but reminded us not to touch anything but her hands for now.

Do you know how hard it is not to touch your child when she is sick or in pain?

We sat at the bedside for several hours, watching her sleep and counting her breathes. Every time her respiratory rate dropped, my blood pressure rose. I don’t think I blinked much in those few hours - I didn’t want to miss a single breath.

Finally, we got to the point of needing to take a break, eat and make a few phone calls to update family members. We went down to the cafeteria and forced ourselves to eat a salad. Lori also got some cookies (comfort food) for later.

When we got back upstairs to the NICU, they stopped us at the door and asked us to wait in the multipurpose room.

“What’s wrong?” I said, “Is everything alright with Caitlin?”

“The doctor will be with you in just a minute guys - hang in there,” she said.

The feelings of doubt came rushing back, and when we sat down inside that room again, both of us began to cry. I couldn’t hold it back any longer - it was one more uncertainty than I could handle in a 24 hour time period.

What happened to Caitlin while we were gone? …………….

I’ll post more about our story soon. In the meantime, feel free to get caught-up by reading the Related Posts below and see pictures of our baby girl Caitlin Arielle.

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