Just before I was about to collapse into bed, I called the night nurse to check in. I figured we would be continuing with routine care, but his nurse was unavailable as she was dealing with a “crisis situation.” This totally flipped me out since I knew she was 1:1 with Baby Theo. They told me to call back in an hour. Exhaustion was quickly replaced with adrenaline as I tried to hold it together. The minutes ticked by, and after an hour had passed, I called again. And once again, I was told the nurse was too busy to take my call. I pleaded with the person on the other end of the phone to give me a hint about what was going on, and she said, “We might need to re-intubate your baby.”

Well, crap. I desperately asked, “Please may I talk to Theo’s nurse before you guys do that?” I held on the line for another 10 minutes, but finally our favorite night nurse came to the phone. She told me a story about how routine care had led to a respiratory crisis. I sat silent for what felt like a minute, though it was probably much less, as I weighed the pros and cons of asking about increasing non-invasive support first. My split second thought process went something like this:

“Please, don’t let them re-intubate baby Theo! The nurses seem to like us and I really trust this nurse in particular. Who is the respiratory therapist tonight? Is the neonatologist there? Is she going to get on the phone and yell at me for asking questions? A non-medical mom would ask the same things I’m about to ask, wouldn’t she? Why am I even having to think this through?” So much self-doubt had been sowed in the last couple of days.

I wouldn’t be able to live with myself if I didn’t try, so I tentatively asked, “How much oxygen is he on now? At what flow?” (While this may seem like a very medically-oriented question, it’s safe to say that every NICU mom in the world is attuned to these issues and might ask the same question.) The answer was, “2 Liters by high flow nasal cannula at 60% oxygen.” “Oh,” I said. “Is this the kind of episode where increased flow might help?” Instead of being defensive about my question, the nurse said, “I hadn’t thought of that. Let me talk to the respiratory therapist.” She and the respiratory therapist conferred, and luckily the therapist sometimes also works at other hospitals where much higher flows are used. They agreed that they would try a higher flow for a period of time to see if that would help, and then if it didn’t, they’d re-consider intubation.

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I breathed a sigh of relief, both because we were delaying or avoiding intubation for the moment and because it was the first time that I felt like I was able to advocate for my child as a mom. It’s also amazing how much more smoothly things go when there is no defensiveness and the relationship is approached with the general assumption that both parties want what’s best for the baby. Though any semblance of good sleep that night was destroyed, I felt much more emotionally sturdy than before.

The next morning, I again took the early shift so that I could interface with the night nurse and the day nurse. Night nurse relayed her war story from the night before and described how beautifully Theo did on the higher flow. He had already weaned back to the support that he was on prior to the “incident” and we had a little chuckle over the scare he gave us. We had also picked up a roommate in the wee hours of the morning. Luckily, this baby wasn’t as sick as Theo. In fact, one of the nurses from our first day came around and mentioned, “Man, your baby was the sickest baby we’ve had here in a long time!”

And so, we settled in. We got used to being hungry since we couldn’t eat in the NICU and didn’t want to leave, lest we miss an opportunity to interact with Theo. We got used to having to scrub in and out to use the bathroom. We got used to lotioning our excoriated hands, raw from all the scrubbing. We started observing and listening to conversations that went on all around the unit. Because when you are sitting and waiting to hold your baby, there is a lot of downtime in your day. Luckily, B and Mama S would come and go. They were a bright spot in our otherwise dull waiting time. But suddenly, I started to notice nurses making comments about the birth parents, like, “Damn, it’s those kids again.” and “How many times are they going to come in here?”

There were many comments and some were much worse than what I feel comfortable sharing. After an incident where Mama S wasn’t allowed into the unit because she wasn’t legally the mother anymore, we took S and B to the charge nurse and asked that the birth parents have the full rights and privileges of unit access, holding the baby, or doing anything that we would be allowed to do in the Unit. She seemed a bit startled by the breech from the typical protocol, but we reaffirmed over and over that this wasn’t a “typical” situation and that S and B were family to us. It seemed an absolute shame that we had to go to bat for the very parents that conceived and gave birth to Baby Theo. What happens to other birth parents? Do they feel completely abandoned once they hand their infant over?

Once again, the two visitor rule began to be enforced, so we all sat in the lobby in different configurations, with all of us getting a chance to spend some quality time together one on one. We debated the merits of various middle names. We learned about each other’s childhoods, favorite foods, aspirations and fears. We talked religion and politics and culture. No holds barred. Without going into the details, I can safely say that in our case the adoption profile we created 4 long years ago did its job better than we ever could have imagined. As birth and adoptive parents, we couldn’t have been more closely matched if we had spent months getting to know each other first. B said it best when he said, “It’s like we’re the younger versions of you!”

Theo also started hitting some milestones that day. He started weaning his blood pressure support, weaning oxygen support, and sedation was stopped. While he was peeing off excess fluid and looking more like a normal baby, we knew that the simple fact that he was infected meant we would be spending at least a full week in the hospital. We all hoped that it would only be 7 days. We also hoped that his arterial line could be taken out soon so that he could start to feed by mouth.

We began putting the word out to friends and family about the situation and our current needs, we grew closer to Mama S and B, and most importantly we all started to really get to know Baby Theo. I went home early that night to spend time with the girls while Mr. Jacks took night watch. I must have felt safe enough and exhausted enough to let my guard down because when I got home, I wept to our baby sitter for our little boy, his birth parents, our confused girls, and for myself. I didn’t call in for an update that night and was fast asleep before Mr. Jacks came home.

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I have very few pictures from this time that are suitable for sharing. The scalp IV, bruising, lines, and tubes made it really difficult to capture a photo that wouldn’t freak people out. This is my best effort.

To be continued…

Mrs. Jacks’ Adoption Journey part 16 of 16

1. You finally find peace, and... by Mrs. Jacks
2. You finally find peace, and... Part II by Mrs. Jacks
3. You finally find peace, and... Part III by Mrs. Jacks
4. The Amazing Race by Mrs. Jacks
5. Telling the girls by Mrs. Jacks
6. Roller Coaster by Mrs. Jacks
7. The Name Game (Take 2) by Mrs. Jacks
8. Roller coaster update by Mrs. Jacks
9. Less than a week to go: checklist manifesto by Mrs. Jacks
10. Birth of a story by Mrs. Jacks
11. Birth of a story: birth parent dinner by Mrs. Jacks
12. The birth of a story: Friday the 13th by Mrs. Jacks
13. The birth of a story: Deep into darkness by Mrs. Jacks
14. The birth of a story: embracing uncertainty by Mrs. Jacks
15. The birth of a story: a new day by Mrs. Jacks
16. The birth of a story: settling in by Mrs. Jacks