This part of the story was where things got really hard. Please bear with me as I go to a dark place. I promise the ending is much better than this part of the story!

We sat in the waiting room for a while. Our case worker went to check in with the nursing staff and they said to return at noon. She wandered off. B went to check on Mama S. Mr. Jacks and I sat in stunned silence. We were hungry, but didn’t feel like eating. There was nothing really left to say. We hadn’t yet told any family or friends what was going on, so I felt alone and empty. I felt as unsure as I had ever felt.

Finally, the neonatologist came out of the unit and called us in to his office. I quickly texted B to have him come meet us. The three of us went and sat with him. After the doctor introduced himself, he said, “I’m going to say this in basic terms so that B and Mr. Jacks understand.” Mr. Jacks spoke up and said, “Can you please say it in medical terms for us first so that Mrs. Jacks can translate for us later, because we’re not going to remember what you say. It’s all foreign to us.” B piped up to give his assent to that plan. The doctor said, “I will use plain language. I hope you don’t have a problem with that. If you have questions later, I will answer them later.”

The doctor declined to make any eye contact with me, and began to speak to B. “We put a little tube in your baby’s belly button. This is to help give the medicines that your baby needs. We put a special tube in his throat that will help him breathe using a very special machine that gives tiny puffs of air 600 times a minute. We gave him a special medicine to help his lungs.”

I waited so that I could ask my questions. What I learned in those fifteen minutes is that when providers give long-winded bad news, no matter how simply they phrase it, that almost none of what they say is understood. The only things I could have told you at this point was that the baby had one or more umbilical lines and was on a high frequency oscillator type ventilator. There was no talk of the cause of the baby’s distress and no talk about a treatment plan going forward.

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At the pause in the conversation that indicated that the doctor was done, Mr. Jacks piped up and asked the first question, “so does this mean he’s on a ventilator?” This highlighted the quality of the communication we were receiving in a nutshell. I finally got up the courage to speak up. I asked the doctor if he could please explain to me whether he thought the baby was septic (having an infection that was causing his body systems to malfunction) or if there was another anatomic cardiac or pulmonary cause of the problems. His reply was, “Look. This is totally routine. This happens all the time. You just don’t see it because you don’t work in a NICU. This. Is. Routine.”

I tried to use my conflict-resolutions skills and said, “I think we all have the best interest of this baby at heart. I’m just trying to figure out how worried we need to be. I respect what you are doing for us and look forward to working with you. I am a data person and the more information I get, the more I can relax. Thank you so much for helping me with that and I’m sorry if I did anything to upset you.”

It seemed that he felt a little bad for me at this point and was ready to make a grand gesture. He said, “Look. I understand you have a knowledge base and it’s hard to give up control, but – and I tell this to my colleagues too when they have a baby in the NICU – you are the parent here. You need to relax and let us do our job. Your only job is to be a mom. The baby is in good hands.” He had framed it a little better this time, but I felt worse than ever. It seemed I knew less than what I did before the meeting. I had cemented my place as the bad guy, trouble maker, difficult patient.

We were summarily escorted out of the office and back to the waiting room. We weren’t told when we could see the baby. B went back to talk to Mama S and I sat with Mr. Jacks. My eyes welled up. The experience was completely breaking me. I was shaking, lost, scared, and hungry. When were we going to get to see this baby again???

After another hour and a half, we still hadn’t heard anything. We got in touch with the case worker and asked her to talk to the nurses to see when we could come back. They said, “You could have come back at any time.” Oh, the frustration! We took a few minutes to compose ourselves and I decided that I was going to make an effort to find something in common with this doctor, to make our connection more human and less adversarial.

After scrubbing in (NICU moms know this is the longest two minutes ever), I saw the doctor at the front desk and stopped to chat. He said, “So you are a resident up at the U, right?” I said that I was at the U as an attending. He asked where I trained and it turns out we trained at the same program, knew all the same people, and were just separated by a few years in our training. Funny how that is what it took to humanize me to him… his tone instantly softened. He then asked if I had any more questions. I said in a very tiny and defeated voice that I really didn’t, unless he had any idea of what caused this and how long we might anticipate the hospitalization to last. Finally, he gave some small bits of information. He had lab results! He had X-rays! There were actually knowable things about the baby!

I don’t want to bore you with the details, but the baby had a surfactant deficiency in his lungs. His function was improving slightly after receiving surfactant, but it was unclear what the cause of it was. It could have been that the gestational age was wrong (very unlikely), infection, or a primary lung problem. That helped to start narrowing things down. Labs were indicating that there *might* be an infection and the X-ray showed what appeared to be pneumonia, though everyone was calling it a maybe. I was feeling a tiny bit more comfortable with the interaction and so I asked if he was concerned about pulmonary hypertension. The door of congeniality slammed shut as the doctor laughed and said “no” pretty flatly.  We left the desk and went to the warmer to see the baby.

Maybe we would find some solace in seeing him?

To be continued…

Mrs. Jacks’ Adoption Journey part 13 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