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Learning the NICU dance

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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About Sarah Plant, Patient Family

Sarah Plant and her husband, Christopher, live in Mineral Ridge, Ohio, with their daughter, Bekah, and a rabbit named Gussie. She enjoys bike riding and spending time with friends, family and her fellow church members. Sarah is a stay-at-home mom and former high school English teacher. In her "Following Your Heart" blog, Sarah shares her experiences as a first-time mom whose baby was born with a congenital heart defect as well as a mom of a healthy boy.

Comments

  1. Hi Sarah! I know exactly how you feel. My son Kylan was born with HLHS and I have a VSD. We spent the first six weeks at the cleveland clinic and my son had his first open heart surgery at 8 days old and his second open heart surgery at six months old. Besides that he has had six heart catherizations. Welcome to the special hearts family. If you need anything at all please dont hesitate to contact me. I am keeping your family in our thoughts and prayers! Big hugs to you and your family. My email is kuhnie23@gmail.com

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