Dancing the NICU Freak-Out Shuffle

 Thank you so much for all your well-wishes on E’s birth!  They are much appreciated!

Once we knew we were having a preemie, several veteran preemie parents warned me that the NICU is, variously, a “rollercoaster”, “two steps forward, one step back”, and to “never trust a preemie”. Up until quite recently, E had been mostly on a straight upward trajectory. Starting with reasonably good lungs for a preemie despite the PPROM and oligohydramnios, she’d been able to have her feedings go upward at a decent rate, her bradycardia episodes had been minimal, and she was needing less supplemental oxygen. I started to get comfortable and wonder if she was just going to keep doing well all the way through her NICU stay.

I had gotten a nasty cold a week earlier despite more or less developing germophobia and constant careful hand hygiene. I couldn’t visit the NICU until I was 24 hours symptom free. Unfortunately, I wound up needing to wait a full week before I could see E. Arthur, who did not get sick, wore a mask and set it up to Skype in E’s room. It was better than nothing, but not the same.

Finally, on Tuesday, I was cleared to go see E. She looked bigger and fuller in her cheeks, more like a normal baby. Holding her was bliss, and I sat and stared at her for a long while, memorizing her features. She looks exactly like Arthur did as a baby, although she definitely has my ears. This is obvious because I have remarkably pointed ears (for real) and it’s funny to see them on E. E had gained weight, was up to a whopping 3 pounds, and we had a nice day together.

Then came Wednesday.

It started out with Arthur and I having a disagreement. Sleep deprivation can turn even the most minor issues into major ones, and by the time we had smoothed over our differences, I wound up going in to the hospital much later than I’d planned. I was cranky, tired, and out of sorts already when the nurse practitioner (NP) called me while I was in the car. I told her I was on my way and she said she’d talk to me once I arrived.

I’ve been in healthcare long enough to know that NPs and doctors don’t generally call if things are going well. I hurried to the hospital, got up to NICU, and after scrubbing in, headed for E’s room. When I got there, I found several nurses drawing blood and serious looking medical equipment scattered all over the counter.

Cue total panic.

It transpired that E had suffered several deeper, uglier bradycardia episodes that morning during her feeding than normal for her. Bradycardia episodes or “bradys” are a situation where the baby’s heart rate and oxygen saturation plunge below the usual range for an infant. They’re fairly normal in premature babies since preemies don’t have a fully developed nervous system that regulates these things perfectly. However, there had been more episodes than usual and E had needed extra stimulation to recover. A new pattern with bradys can indicate developing trouble, hence the sudden attention and work-up.

The nurses drew blood to culture for bacteria and check some labs. They started an IV for fluids. X-ray was called to check E’s lungs and abdomen. I stood watching and sobbed. The nurses tried to reassure me. E wasn’t lethargic. Her vital signs were staying stable. So far, her labs were coming back normal. They were starting her on antibiotics just in case there was an infection somewhere. She had good bowel sounds, no blood in her stools, and her abdomen was soft. In the one funny moment during the whole time, E managed to get some impressive range for a girl and peed all over the nurse when they were trying to put in a temporary catheter to get a urine sample.

I wasn’t having any of it. I knew, intellectually, there were any number of issues that could have caused the bradys, ranging from the fairly benign (reflux) to the very bad (necrotizing enterocolitis/NEC) but it didn’t matter. I was very worried and scared.

Then the x-ray came back. The neonatologist said he was concerned about an area in her bowel. He couldn’t be sure whether what he saw was air bubbles in the intestinal wall, indicative of NEC, or just some stool in there. As a precaution, E’s feeds had been stopped as soon as she’d started having bradys, antibiotics started, and another x-ray in six hours ordered. I sat holding E, trying not to cry. NEC is an extremely serious condition. Basically, a part of the intestinal wall gets infected and dies, which can cause the intestinal contents to leak into the peritoneum, in turn causing massive infection and sepsis. It’s not unusual for babies with NEC to need surgery to remove parts of their intestines, which can cause issues with nutrient absorption and feeding later on. Sadly, around 30% of babies with NEC die.

The next x-ray was also inconclusive, but the doctor said he still saw an area he didn’t like. I decided to spend the night in E’s room because the idea of getting a 2 am phone call that she’d taken a turn for the worse was intolerable. E did well through the night, however, with one minor brady. I waited for the x-ray scheduled for morning. It was difficult knowing the only thing I could for my child was hope, pray, and wait (again).

The third and fourth x-rays, thank heaven, came back looking infinitely better than the first two. In fact, the NP and neonatologist said that if they hadn’t seen the 2nd x-ray yesterday evening, they wouldn’t even have felt worried and would have just restarted her feedings today. E doesn’t have any of the other symptoms of NEC, such as bloating or blood in her stool. The problem is that with two inconclusive x-rays, while they don’t think E has/had NEC, they simply can’t rule out 100% the possibility that they caught NEC at a fortuitously early stage and due to stopping feeds and starting antibiotics were able to prevent it from progressing.

At the moment, the whole “what do we do next” issue is still very much undecided. Because NEC can’t be ruled out entirely, the current inclination is to hold E’s feeds for anywhere from a couple of days to 1 week and give her nutrition through her IV so her bowel can rest. The problem with this plan is that E would need a special IV called a PICC line if it’s going to be more than a day or two before restarting feeds. The NP and neonatologist are holding off for the moment on making any specific plan until another x-ray or two can be checked and labs done tomorrow.

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12 thoughts on “Dancing the NICU Freak-Out Shuffle

  1. I’m so sorry that you, E and your husband are dealing with such stress. I’ll continue to hope for progress for E.

  2. Oh hon, I wish there were words that could make this time period easier, but having lived it, I can tell you that there aren’t any. It is so hard. So stressful. Just sending good thoughts. We’re all there with you in your pocket.

  3. Oh boy. I’m glad that E has been doing so well so far (except for this latest development). I hope that she doesn’t need a PICC line and that she is a on quick path out of the NICU!

  4. So terrifying. NEC is the nightmare of any preemie parent. I know that I am late to this, but I am praying for you and baby girl. Hopefully everything is okay and you are back to those two steps forward again. 💗

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