NICU roller coaster

The life in a NICU is a roller coaster, I was told by virtually everyone I met in the last three weeks. The roller coaster may take a very sudden unexpected turn at times, and yesterday was one example.

Emilia was in a good condition until yesterday afternoon. During the morning round, all the doctors cheered that she was doing very well and they were happy. Suddenly in the late afternoon, she was desatting and the nurse had to turn up the oxygen level a bit. At night, around 1:30am, I called the NICU to check how she was doing. Something inside me was not quite settling and I wanted to speak to the nurse before I went to bed. She said Emilia had a lot of spells in the evening. She was not tolerating the milk well (meaning a lot of milk was remaining in her stomach and it had a greenish colour). She had lost 30g since the day before yesterday. They had just taken some chest and abdominal X-rays and were waiting for the results. She was likely going to be intubated again and her feedings had been on hold since 8 pm.

What a sharp downturn this was - all the bad things that could happen were happening, all at once. First, as any Korean would do, I blamed myself for all these bad things that happened. I had been too content, too happy with her progress and I was celebrating too early and it spoiled it all. I must have brought bad luck because I told everyone she was doing so well and we were going to have a smooth sail finally. It is bad luck to say such thing. You never celebrate for something you have not attained (yet) for sure.

Any mother would be distraught by hearing such news over the phone in the middle of the night and I was no exception. I cried in the bed, and cried some more when I first saw her in the morning. She had the breathing tube through her nose instead of the CPAP mask. During the round, the neonatologist told me she wanted to check if Emilia had any bacteria in her lungs. She too was surprised by the sudden change.

Emilia's feeding stopped altogether. TPN is back on, along with the antibiotics that she just came off two days ago. She will probably lose some more weight today and the next few days. Maybe back to 900s. Even 800s.

Yes, the life in NICU is really an emotional roller coaster. We celebrate and grieve little things each day. Important milestones achieved are overturned the next day. A week's progress is unexpectedly backtracked to point zero. When things look so gloomy, suddenly your little one just picks up and makes a big step forward, lifting all the saddness and uncertainty. This has been repeated for 22 days already and I still have at least 78 more days of this roller coaster.

Being the person I am, it is very difficult to be an upbeat, optimistic, "half-full glass" mother. However I will try to think positively and give strength to my little girl. I feel it's the only thing I can do for her now.