My HELLP Syndrome Gets Help
I was admitted to UC Davis Hospital in February, 2012, with HELLP Syndrome (A life-threatening pregnancy complication, a variant of preeclampsia. Both conditions usually occur during the later stages of pregnancy). I had undergone 7 weeks of misdiagnosed early onset symptoms, at a different hospital system.
NEC (Necrotizing Entercolitis)
Logan was born at 1 lb 5.9 ounces via emergency c-section at 25 weeks and 1 day. He was intubated within his first 10 seconds of life. Because of the ventilators, we weren’t able to hold him until he was 5 weeks and 4 days old. Logan was the only baby, out of 100 in a probiotics study, to develop NEC (necrotizing enterocolitis–a medical condition primarily seen in premature infants where portions of their bowel undergo tissue death). Thankfully, that resolved itself after he had hernia surgery and grew to 5 pounds. After 97 days in the NICU, we were finally able to take him home. Sadly, however, because of a bowel stricture and NEC damage, he needed to be re-admitted to the NICU three weeks later for the most gut-wrenching and heartbreaking time of our lives. After 103 more very long days, tons of IV sticks, art lines, pic lines, 2 sections of bowel removed, multiple kidney stones, tons of x-rays, respiratory failure, pain med DT’s, bagging, and even palliative care talk…we finally went home, again.
UC Davis Children’s Hospital Saved Our Lives
Because UC Davis is a teaching hospital, giving us access to a wide variety of people, our experience at UC Davis Hospital was not only fantastic–it was successful. Different eyes see different things and a shift change can save a life. A handful of medical professionals shared our resolve and tenacity. It wasn’t easy to fight the big fight over and over, especially when Logan’s left lung kept collapsing, his bowels refused to cooperate, and edema and sepsis consumed his little body. Thankfully, this select group was willing to try. They tried time after time until Logan said “no more” in the saddest way possible. Luckily for us, one day, one shift change… a new person joined our team. He brought with him a whole new perspective, ideas that hadn’t crossed anyone’s mind. From across the room, his eyes looked into mine and he threw his plan at us like a handful of darts. That afternoon, Logan opened an eye.
So many UC Davis Children’s Hospital staff made a positive impact on our lives. From the department head to the delivery guy I ran into regularly in the elevator. Out of all these wonderful people, however, pulmonologist Dr. Sanjay Jawar is our ultimate hero. When he asked me what I thought made the difference for Logan, I told him “You came on shift”. When I asked him, he credited me for fighting for Logan and Dr. Phillips for heeding his advice. Let’s just say it was a team effort.
I also have to send my gratitude to retired pediatric surgeon, Dr. Clifford Marr, for not being married to a cookie cutter plan of attack. He stated that he would simply go in and see what he could do. Knowing that he would give my son the very best care brought us hope and made him our requested surgeon for all of Logan’s other surgeries. Love and gratitude also go out to Doctors Underwood & Poulain; NNP’s Sandi & Marlys; Primaries Ahern, Perkins, Beltran; Nurses Mu, Iris, Allison, Christy, Becky; RT’s Mu & Clark and so many others.
Advice for the NICU-Bound
If parents on their way to the NICU were to ask my advice, I’d tell them to do their best to build respectful relationships with their medical team. It’s tough, you feel like “Why should I have to do anything? I just want to crawl in a hole and cry!” Your medical team, however, is your most important life line and crucial support team, so get to know them. It was helpful for me to always say thank you to everyone by name–doctors, nurses, x-ray techs, housekeeping staff, shuttle drivers, volunteers, students, lab runners, you name it. I’d also advise going along on morning rounds every chance you can, night rounds too if possible. And while we’re at it, make sure you don’t forget to thank the important night shift team. Lastly, find a healthy coping skill. Mine was my dark humor. Sorry, Christa & Ramey; it made Ebony and I laugh.
–told my Logan’s mom, Melissa