Hi friends and family!
I have decided to start a blog about life with Daisy in the hope that it will answer questions and keep loved ones in the loop as we embark on this new journey of family life.
We brought Daisy home yesterday, June 7, from the Intensive Care Nursery at Thomas Jefferson University Hospital where she lived for seven weeks. To say we were elated to walk out those hospital doors for the 98th time with our baby in tow would be the understatement of the century. Bringing Daisy into this world then giving her immediately over to the care of someone else has been a heart wrenching experience. Gently kissing her goodbye every day, twice a day, and returning home to an empty, baby-less house after months of tender preparation and loving anticipation has been difficult beyond measure. So, we are thrilled she is here with us. Thrilled, and a little terrified too!
A little background...
The first six months of my pregnancy were delightful. I sported a rosy glow and paraded my growing belly with beaming pride. I spent my weekends shopping for and preparing meals packed with super foods and special nutrients and tracked my food intake on a massive spreadsheet. I worked out with a trainer at the gym three times a week to stay strong and prepare myself for labor. I slept ten hours a day and wrote in my journal and read baby books and took lots of full-length selfies and happily purchased stretchy clothes that presented my baby bump to the world in the most obvious way possible. I didn’t encounter a single episode of the dreaded morning sickness. (For a short two weeks I experienced a roller coaster of reactions to food smells - my beloved garlic was suddenly repugnant - and then it was over.) I texted my friends about how I was “born to be pregnant!” and joked that I’d been waiting my whole life to walk around without sucking in and be congratulated for having a belly. It was all absolutely wonderful…. Until it wasn’t.
At the end of February, I visited Boston to surprise one of my best friends for her 30th birthday. On the flight home to Philly I started to feel funny. I'd traveled back and forth to New England for work as I always do throughout the pregnancy and fitting into an airplane seat and lugging bags through the airport wasn’t super pleasant but generally I was fine. This time, though, my back started to really really hurt. Fast forward a few hours from landing and I’m in the ER, diagnosed with kidney stones, an experience that was new and an agony I wouldn’t wish on my worst enemy.
I spent a week in and out of the hospital and finally went in for a lithotripsy which is a routine procedure to zap the stone with a laser and shatter it into pieces. The surgeons monitored Daisy via ultrasound throughout the procedure and she was totally unaffected. The whole ordeal was super, super painful but after the stent was removed and inflammation of the kidney subsided I was feeling better.
At a follow-up ultrasound a few weeks later, I asked the radiologist to check on Daisy, who seemed to be rather quiet. The tech acquiesced and ran the probe over my belly but didn’t say anything when I asked how the baby looked. After a few minutes she left the room and came back with a much older doctor who did his own quick evaluation then turned the lights on and sat down. He explained that he could see almost no fluid in the amniotic sac and that the baby was in distress, exhibiting excess fluid in her belly. I rushed to the Labor & Delivery ER where I learned that Daisy had a condition called isolated fetal ascites, which is the existence of excess fluid in the belly, lungs or brain. Fortunately, Daisy’s was concentrated in the belly which is arguably the least dangerous.
Isolated fetal ascites is a very, very rare condition and is typically symptomatic of a larger underlying issue which can often be fatal. Once doctors identified the ascites, they started working quickly through a list of over 60 different causes, trying to eliminate them one by one. I underwent an amniocentesis (a fun procedure where they stick a 9 inch needle into your belly to pull a sample of amniotic fluid for testing) for extensive genetic testing and gave what felt like gallons and gallons of blood. From beginning to end during my pregnancy I spent 18 nights in the hospital.
For the next four weeks, the doctors tested Daisy and I for what felt like everything under the sun. Much of what they were (and still are) testing for scared Nick and I immensely. We met with doctors from many different disciplines, all of whom were baffled by Daisy and I. The Maternal Fetal Medicine Team at Jefferson met weekly to discuss our case and consulted with teams from other hospitals in Philadelphia and beyond. Nick and I devoured every scholarly article on fetal ascites we could find and cried as we read about one fatality after another.
Doctors spoke to us in measured words and hushed tones, constantly watching our faces for reaction. They recommended we start therapy to process our emotions and prepare ourselves for potential loss and mourning. After I cried through an appointment, my OBGYN prescribed an antidepressant.
At about 30 weeks I developed polyhydramnios, an excess of fluid in the amniotic sac, which basically felt like someone was slowly inflating my belly like a balloon to see how far the skin would stretch before it popped. Everything was painful - breathing, sitting, standing, walking, the list goes on. The only place I felt comfortable was in a hot bath… And I quickly learned one can only take so many baths in a day! I laid awake every night for hours staring at the ceiling quietly crying, praying that the pain would lessen or the next day would pass quickly. I was emotionally and physically exhausted and felt like I was teetering on the edge of insanity. At this point we were going to the hospital three times a week to check the baby’s heartbeat and monitor her ascites via ultrasound.
By week 32, things had become so unbearable I knew something wasn’t right. When we got to our regular hospital visit I expressed my concern and some quick tests revealed I had developed severe preeclampsia (HELLP syndrome) and mirror syndrome. My kidneys and liver were starting to fail, blood pressure was climbing and I was at risk for seizure so we went straight into an emergency C-section.
Daisy Anne Sullivan was born on April 20, 2016 at 10:27 PM, weighing in at 5 pounds 8.5 ounces. After delivery, she was brought straight to the Neonatal Intensive Care Nursery where she spent the next seven weeks. During her time there, doctors monitored the slow resolution of her fetal ascites while noticing new symptoms like low muscle tone, difficulty breathing and aspiration when she tried to feed by breast or bottle. Her lungs were underdeveloped due to her prematurity and scarred because the fluid in her belly put severe pressure on the rest of her growing body. An MRI showed white matter in the area of the brain that controls motor skills. A one hour EEG was normal but a 24-hour EEG days later was “very concerning” to the neurologist who reviewed the results and later told us that while he is a pessimist, he saw nothing that gave him “reason to be optimistic about Daisy.” She is now only feeding by NG tube because she is unable to complete a “suck, swallow, breathe” sequence and manual feeds end up in her lungs. At some point she may have a gastrointestinal feeding tube put in surgically. It is unclear whether she will ever feed normally. She also struggles to regulate her body temperature. All of these are pieces of a puzzle that doctors are working hard to put together.
Daisy continues to be a mystery to every doctor. Her room in the NICU was a revolving door of specialists who were interested in observing her. A resident at Jefferson is writing medical journal article about her. We are working with teams at Thomas Jefferson University, Childrens Hospital of Philadelphia and Nemours DuPont to try to understand what caused Daisy to be sick in the womb and what is holding her back now that she is here in the world. She is currently being tested for a number of lysosomal and metabolic storage disorders - many of which are terminal.
So, here we are...
Today is the first full day with Daisy home and we are so, so, happy. It finally feels like our little family is complete. The road ahead is uncertain and we are both desperate for answers and a little afraid to know what those answers will be. For now, we are focusing on the positive, celebrating every seemingly minuscule milestone and treasuring every minute we have with our sweet baby.
Our goal is to be totally transparent about this journey in the event that it could help even just one other family. We will continue to share progress as time goes on. We are so grateful for our family and friends who have supported us through the ups and downs of this roller coaster thus far. The prayers and well wishes mean more to us than you could possibly know.
The Sullivan Family