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Five Weeks and a Day - A NICU Story - Day 37

Day 37 - September 19, 2014, and beyond...

It’s finally here. Discharge day. The day our daughter comes home from the hospital. We are a mix of elated, anxious, terrified and relieved, plus a million other things we can’t quite name because they are feelings and emotions we’ve not experienced before.

LoLa had passed the carseat test. Preterm infants must sit in their car seat while monitored for a period of time to show that they can handle the semi-reclined position with no episodes of bradycardia, oxygen desaturation, or apnea. This is a requisite of discharge.

Sean and I had woken early this morning to leave the parent room and go to work, returning to the NICU this afternoon to retrieve LoLa. Our nurse has packed up her things, as well as a HUGE goodie bag of things like diapers, hats, binkies, slow flow bottle nipples, Triple Paste, the works! She’d asked that we bring a cooler to clear out our frozen milk stash, so we’ve brought a medium sized lunch cooler. We had no idea how much we’d built up in their freezer! That poor cooler is about to bust at its seams! We dress LoLa, hook her up to the portable monitor, secure her in her carseat and receive some last minute instructions. The nurse has the duration of the walk to the car to impart any tidbits she thinks these poor, scared first-time parents need in order to manage taking home a child hooked up to a machine. LoLa’s five-pound frame appears to be swallowed by her clothes and carseat.

We arrive home and introduce the dogs to their new housemate. They are both very excited and receptive. We settle LoLa in to her pack’n’play for a nap and stimulate her when the monitor goes off indicating her heart rate and breathing have drifted out of normal ranges. When the high pitched scream of the box sounds, the dogs prick their ears up and become alert. Jackson barks.

At times the monitor is a source of frustration, like when the adhesive of the electrodes starts to abrade her sensitive skin. Other times, it is a literal life-saver, like when the alarm sounds while driving on busy, winding Lincoln Drive where there is no safe place to stop, and my heart races while I decide between whether to risk pulling over as cars whiz by or wait while LoLa continues to turn greyish in her carseat until there’s a safer place where I can get out and stimulate her breathing. Eventually the sound will be so ingrained to elicit a physical and emotional response from Sean and I that we will respond with the same Pavlovian reaction to the oven beeping to tell us it has reached its desired baking temperature. This continues for some time even after the monitor and caffeine are finally discontinued in February when LoLa is six months old.

LoLa undergoes another two exams for ROP as described before. The final exam falls on her due date, October 9 2014, and her retinal blood vessels are deemed mature.

As for LoLa’s reflux that isn’t reflux, it turns out it is definitely reflux. The NICU doctor was absolutely correct that she doesn’t exhibit the typical signs of discomfort. In fact, as she projectile vomits the entire contents of her stomach, she doesn’t so much as whimper. But her breath is acidic and she cannot go a day without bathing us in a curdled display of regurgitated breastmilk. Our furniture is ruined, her clothes are stained, and she is not gaining weight at the proper rate. We experiment with formula supplementation without significant changes in her weight gain. One March night, LoLa vomits blood. Her pediatrician prescribes Zantac and after two more months, he’s still unsatisfied with her weight gain. We discuss differential diagnoses and he orders a stool test and blood test to ascertain whether she has a dairy allergy. Her stool is positive for occult blood, but the milk IgE test is negative. He refers us to a gastroenterologist at CHOP and expedites our appointment to June 3rd. She sees a very thorough doctor who looks at her weight gain pattern to date, her entire history and then extensively discusses differential diagnosis with us and lists five potential approaches. She feels the most likely diagnosis is GERD (gastroesophageal reflux disease) and prescribes omeprazole and an upper GI study. The test consists of swallowing a barium-like

Made this onesie to celebrate the day LoLa lost the monitor and went "wireless" at around 6 months old!

material that will show on the fluoroscope and make sure there is no anatomical reason for her vomiting. We fill the prescription of the omeprazole and on the way home from the pharmacy, LoLa says Mama for the first time. After the first dose, LoLa never vomits again. Her weight begins to take off, and gaining an ounce a day, she reaches 17 pounds at her first birthday. LoLa slowly “catches up” on her milestones and before her second birthday is presenting as a completely typical kid, weaned off all medications.

Made this onesie to celebrate the day LoLa lost the monitor and went "wireless" at around 6 months old!

Being LoLa’s Mama and Dada is the greatest joy and privilege. She has shown us how to be strong and vulnerable, brave and scared, stoic and emotional. She is lively, brilliant and energetic. She is an ordinary miracle.

See ya, NICU ID bracelet!

Happy first birthday, LoLa! Oh, the places you'll go!

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