After I went into preterm labor at 24 weeks and then managed to hold delivery off until 28 weeks, Eleanor was born first at 2 pounds and 4 ounces. Andrew was next at 2 pounds and 6 ounces. They were born three months too early.
Eleanor was in the NICU for 62 days before coming home. She was mostly a feeder and grower. Overall, aside from the time her right lung collapsed when she was nine days old (which she quickly recovered from), her NICU stay, thankfully, was largely uneventful. These days, she is a very healthy, energetic ball of coos and limbs.
Andrew, unfortunately, has been on a much more complicated journey.
In medical-ese, here it is: Due to abdominal distension and lack of stooling, underwent an ex-lap at 1 week of life with diagnosis of meconium ileus. Started feeds shortly after and tolerated well. At one month of life, went into severe sepsis, presumed but not confirmed due to Necrotizing Enterocolitis (NEC). Recovered, but was left to deal with edema with frequent Lasix, Grade 2 Retinopathy of Prematurity, persistent thrombocytopenia, chronic lung disease, and bilateral/cystic Periventricular Leukomalacia (PVL) of the brain with hydrocephalus ex vacuo. NPO for one month, restarted feeds, showed signs of intolerance. Upper/lower GI studies done with no signs of obstruction. Ongoing debate over NEC with partial obstruction versus a gut dysmotility disorder. Showed signs of cholestasis/liver disease so TPN lipids are switched to experimental Omega-3 fish-oil drug called Omagaven. Around this time, started to breathe room air on his own. Another upper/lower GI study completed, but this time, with signs of obstruction. Underwent a second ex-lap around 130 days of life. Surgeons find acquired jejunal atresia, confirming NEC as original diagnosis, with resection of 6-8 inches of bowel and re-anastomosis. A gastrostomy tube placed as precautionary measure due to prolonged NPO status. However, due to poor nutritional status and powerful crying, the surgery wound dehisces and eviscerates. Andrew goes into surgery again to contain his guts with a biosynthetic abdominal mesh. A wound vac is placed, then removed five days later. Wound care switched to dressing changes twice a day. No longer NPO, feeds are started with great success (now bottling 4 oz, Q4), g-tube still intact to avoid healing complications, bilirubin/LFT levels now at normal levels (so no longer on Omagavan), and the abdominal wound has started to slowly heal.
So, here it is, translated (and pared down to the essentials): Andrew wasn’t pooping upon birth, so he had stomach surgery to fix it. Then he became sick from a super scary stomach infection which left behind all kinds of complications, including brain damage and a broken digestive system. Because of his stomach issues, he didn’t eat for three months. Then doctors figured out a way to fix him and took him into surgery to work on his stomach again. Afterwards, the surgery wound was not healing because of malnourishment and he cried his guts out, literally. So he went to surgery again, for the third time. Eventually, he started eating again (and pooping!), and the wound starts to very slowly heal.
After five long and challenging months in the NICU, Andrew finally came home on Friday, October 22. Andrew still has months to go in terms of wound healing. In addition to weekly visits with his surgeon, a nurse comes to our home twice a week to check on the healing process. Andrew is going to be a very busy guy for the next few months as he is being followed by surgery, ophthalmology, neurology, gastroenterology, audiology, behavioral/developmental pediatrics, the NICU high-risk clinic, his regular pediatrician, and the state of New York’s Early Intervention program.
Andrew has had a rough road and a long one ahead of him, still. But we are thrilled, thrilled, THRILLED that his stomach and the overall status of his digestive system is, finally, in working order. Proper nutrition is essential for wound healing, overall development, and a shot at an active and healthy life.
But, above all, we feel so blessed and thankful to finally have our son home, with his sister, at last.