Learning the NICU dance

2012-01-11 12:31:33 by Sarah Plant, Patient Family, as posted on the inside.akronchildrens.org blog.

There’s a cliché you sometimes hear in the NICU—“Two steps forward, one step back.” Well, in the past seven and a half weeks Rebekah has been making leaps forward and only taking baby steps back. I guess we were just due for a bad day.

In the past weeks, my husband, Christopher, and I have learned a lot of new terms—nitric oxide, ventilator, oscillating vent, ECMO (extracorporeal membrane oxygenation—the heart lung bypass machine, the one thing we were very happy to narrowly avoid), intubated, extubated, chest tube, pulmonary hypertension, pneumothorax, pneumopericardium, hypocalcemia, RDS (respiratory distress syndrome), VSD (ventricular septal defect), ASD (atrial septal defect).

We’ve had bad days — the first time they tried to take her off the vent and she lasted half an hour; the day the doctor told us that her lungs seemed to be better so her breathing problems were probably a symptom of congestive heart failure; all the times a million small setbacks occurred. In the grand scheme of the NICU world, Jan. 5 was not really that bad. It just felt like it.

Starting with her 6 p.m. feed Dec. 29, Bekah took all of her food by mouth. Her ng (the feeding tube that goes from her nose to her tummy) came out, and she started to look like she didn’t belong in the hospital at all. The bad part was that we started to feel like she didn’t belong in the hospital too.

At first we kept track, counting the bottles and cheering after every one. After a while, it became common place, ordinary, and we were so used to her just doing it that when she stopped we were crushed.

At 9 a.m. the morning of Jan. 5, the ng returned and after a few minutes I remembered what we are here for. We’re waiting for Rebekah to get better, and if that means eating through her nose now and then, well, I’m ok with that.

Read more of Sarah and Rebekah's story through her blog, Following Your Heart.

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