Life was perfect! My husband, Greg had a wonderful job he loved, our year and half year old son, Wyatt was a dream and we were expecting another baby; a girl we named Ellery! We had it all and life was wonderful! But our world forever changed September 9th, 2008; the day we learned our unborn daughter may not survive.
I was 30 weeks pregnant and full of excitement the day I went in for an ultrasound. My excitement was taken away in an instant as I heard the ultrasound technician tell me fluid surrounded my baby’s heart and lungs. My husband and I were sent rushing to United Hospital to get an in-depth ultrasound, fetal echocardiogram, amniocentesis, genetic counseling, and countless more tests. We were told our daughter’s condition was life-threatening as she had bilateral pleural effusions, fluid surrounding her heart and lungs. We were told her chances would plummet if the fluid spread around her body.
A week later we were back at the hospital for more tests and ultrasound. The grim news came when the doctor entered and told us fluid had seeped into Ellery’s scalp – officially diagnosing her with Fetal Hydrops, and sucking away her chances at life. She was given just a 5% chance to survive, as Hydrops carries a mortality rate of up to 98%. The exact words are forever engraved in my head, “Her lungs may not be compatible with life.” It was beyond devastating to hear, as I started to weep into my husband’s shoulder.
A few days later, I was admitted to the hospital in the ante-partum unit. The nursing staff took excellent, and outstanding care of me for eight days before Ellery would enter the world. They knew how hard this was going to be for my family and I, yet somehow I stayed optimistic. Even the day before my daughter’s birth, my father said to me, “God needs angels, too.” How do you respond to something like that?
My planned c-section was on Tuesday, September 30th. Around 9:45 am, the call came, they were ready for us. “Us” – they were ready for “US” – me, Greg and Ellery. They were ready for us. And, I was ready for them, as ready as I could ever make myself. I remember being offered a wheelchair, but declined. I could be strong and walk myself into my own operating room. The walk, oh I remember the walk. From the ante-partum unit to the birthing suite. It must have been such a sober thing to watch. My nurse, Maureen, Greg and I led the way, with my parents, grandparents, Greg’s mom and brother all walking behind us – it honestly felt like a funeral procession. I don’t think any words were spoken, just the shuffle of our feet walking to my baby’s birth…
When we arrived at the doors, Maureen escorted me in, where I had to kiss and hug my family and husband good bye. This was hell. I had to face this on my own now – just me and my Ellery. Thank God for Maureen – she was there every step of the way – I know I would have lost it without her. We took a couple steps and stopped just before the operating room doors. I had to drink some antacid stuff to neutralize my stomach – in hopes I wouldn’t throw up. I remember the taste – something I still can’t explain to this day – just awful. They told me to do it like a shot – I think I joked about being from Wisconsin and that I could do that! Ha ha. And that, was the end of my jokes and wise cracks, as the operating doors opened, and I was shown the operating room that awaited my baby. This is when I completely lost it.
There were four or five nurses setting up all the instruments and medical devices. I was sobbing and grabbed one of the nurses by the shoulders and said, “Please save my baby!” She replied back with tears in her eyes, “We’ll do everything we can.” I will NEVER EVER forget that moment.
The shuffle then continued to my operating room – just across the hall from Ellery’s. It was big, and bright, and cold. It not only felt cold, but felt cold. I remember the time being called when I walked in, “10:01”. No one, and I mean no one would look at me. I sat up on the bed where I was prepped for my spinal. The spinal went in and started working immediately! I was shocked how quickly it worked, because in a matter of seconds I could not feel my legs and was being laid down by the nurses. The anesthesiologist was the next person I saw, but it felt like he didn’t see me. No one did – they just saw my belly and the helpless baby inside. I like to think they were trying to focus on what they were about to do – save my baby’s life! I think the anesthesiologists assistant was someone I felt safe with.. She was there to care for my needs, and she did the most excellent job. SHE looked at me – which made me feel safe and human again. Someone looked in my eyes, and saw my pain and fear. I needed that. She took my blood pressure a couple times and all was fine – maybe a little high, but considering the circumstances – it was good.
I saw the surgeon, the doctor who was part of the decision to bring Ellery into the world, enter the room. Dr. David was about to open me up and deliver my baby. I was asked if I could feel anything, and I could – which caused me to panic. Then they asked, “No, do you feel pain?” “…no” I said with hesitation. “Ok, we can start – get dad.” Greg then entered the room, fully dressed with a gown, mask and head cover. Then I heard these words, “scalpel”. I felt the cut across my lower belly, but didn’t feel pain. I felt the doctors working to get to my uterus, where my Ellery was all snug inside of me. I prayed and just looked into Greg’s eyes for any reassurance and hope he had. After only minutes, I was told, “You’re going to feel some pressure and tugging.” I felt the doctors push down on my belly and A TON of fluid came pouring out of my body. This was the weirdest sensation, there was so much fluid in me, it felt like my body was being lifted off the table! And then, the tugging started. The tugging to peel me open and to see my darling baby.
At exactly 10:34 am, Ellery Cherie’ Case was born! Pale blue in color, not moving and not crying, as her little lungs had no room to inflate. She was whisked away in an instant, and I only got a glimpse of her before I urged my husband to go with her – give her strength and let her know you are here….because I couldn’t be there. I wanted nothing more than to be by my new daughter, cheering her on in her biggest battle, but I was laying on an operating table, shaking uncontrollably from the surgery and the shock to my body, and trying to control the ever-mounting amount of stress.
The dedicated neonatal team was waiting for Ellery in the next operating room, waiting to try to save her life. It was twenty-five of the longest minutes of my life as I waited, sobbed and prayed to God to give my baby life. The neonatal team took 14 ounces of fluid out of Ellery’s chest, all while chest compressions were keeping her heart going. After three attempts she was finally intubated and on the oscillating ventilator, for the most critical patients. She was then stable enough to move to her new private room in the NICU – the first “home” she would ever know.
During her first day she received two chest tubes to help drain the fluid from her tiny, innocent, swollen body. It was always touch and go – like all days in the NICU, but Ellery’s first night was a nightmare lived out loud as her oxygen and heart rate took a nose dive. The respiratory team rushed to her room, her blood gases were checked, and it was discovered Ellery was suffering from pulmonary hypertension (high blood pressure in the lungs which is fatal if not treated) as well as pneumothorax (air pockets outside of her lungs from her lungs not being developed enough). Within minutes a Nitric Oxide tank was wheeled into her room; when all the tubes were connected Ellery’s stats perked up – she was back, but nowhere near out of the woods. Morning came and we found ourselves rushing to the NICU to be by Ellery’s side as she once again had no reserves left. It was then my husband and I took somber photos of our baby together as we were not sure how much longer she would remain with us.
Days came and went and she was slowly healing and fighting off the fluid that was trying to overtake her. We had her room filled with get well signs, pictures, and a calendar one of the nurses made for Ellery. I tried to make it feel like a home for her, and to encourage her and let her know that so many friends, family and even strangers were praying for her.
When my baby was eight days old, I was FINALLY able to hold her. Tears streamed down the nurses’ faces as they helped re-run the tubes and wires and placed my fragile baby in my arms. My mother and sister were there to tape the beautiful moment – video I just watched for the first time just days ago. I whispered to Ellery, told her how proud I was of her, and that I would always be there – in the hard times and good. As she lay in my arms with so many tubes I couldn’t count, I watched her heart rate come down and her breathing regulate – she knew I was her mama and she was in the safest place, my arms. I finally got my golden moment – to hold my little girl, eight days after her birth.
It was Ellery’s 10th day of life when a nurse practitioner explained Ellery had Congenital Chylothorax – a leak in her lymphatic system, which most likely caused her Hydrops. To reduce the fat and fluid in her system, she was started on a low fat formula which seemed to do the trick, as it slowed the fluid accumulation in her chest. I was so grateful the staff found this and was able to reduce the fluid – I actually hugged the nurse!
The next few days brought about good news as Ellery had her left chest tube removed and was extubated. We cried tears of joy as we watched our little girl take her very own first breath and cry when she was twelve days old! To hear your baby cry for the first time, most parents hear that beautiful sound right away; we waited 12 days! A few days later, her right chest tube was removed and Ellery was on the fast track to recovery. She came off oxygen and had almost absorbed all the fluid, showing us all what a little peanut she really was! During rounds the staff would often step into Ellery’s room and marvel at her; they even called her the “incredible shrinking baby”!
Ellery became an official NICU graduate on October 27th, 2008, but that wasn’t the end of her hospital stay. I raced Ellery to the hospital the very next night as her oxygen saturation dropped to the mid 80s. We were admitted over night to the pediatric floor as Ellery needed a little whiff of oxygen. I begged for the NICU to take her back, but they would not. I wish she would have been allowed back in as she was only gone about 24 hours; and I longed for the people we knew, the people who knew us, who knew our baby. We were home bound the next morning with oxygen tanks in tow. Twice over the next week we battled the waiting room of the ER as Ellery suffered from respiratory distress – fighting to keep her lungs open against the powerful fluid. She was finally admitted to the pediatric intensive care unit on November 6th and found the fluid had re-accumulated. The haziness in the x-ray was all too familiar of her NICU days, and watching her struggle to breathe was heart-breaking. After a week we brought our baby back home! However, Ellery’s homecoming was short lived again as she was re-admitted a week later. Once again, fluid had seeped into her chest, leaving her in discomfort and in respiratory distress. The x-ray showed it again, but we didn’t need to see it to know Ellery was in distress, watching her retractions with every breath.
Our second pediatric ICU stay was similar to our first; we were put in the same bed with only the privacy of a curtain. I worried about everyone who walked by and prayed my baby would not get a cold, the flu or RSV. I constantly asked the nurses to search the database if anyone was admitted for RSV, knowing that infection could kill my baby if she contracted it in her critical state.
Another week went by in the PICU before Ellery was discharged. But this time was different, as Ellery came home on the high flow, with a tiny whiff of oxygen. We found she needed the flow to help keep her lungs inflated against the fluid more than she needed the actual oxygen. This regimen seemed to work well for Ellery, and she liked it as I’m sure it made her feel better and breathe easier.
Ellery came home for good the day before Thanksgiving in 2008 – and she was home to stay! I will always say that was the best Thanksgiving ever – as we had so much to be thankful for! We were finally complete in the comfort of our home, the four of us. And while it was the most stressful of times to watch her so carefully, it was soothing to have her in the comforts of home to heal.
While the next few months brought about weekly doctor appointments with the pediatrician, pulmonologist, genetics, neurologist and endocrinology, we survived as well as our daughter. We nursed her back to health at home with all of our medical equipment, as she was given a clean bill of health from the Chylothorax on February 12 of 2009.
Since that time, Ellery has shot up the growth chart! And today, you would never know she was a critically ill, premature baby. She has a few “battle wounds” to show for her rough start, and has a gross motor delay and speech delay, but she is a beautiful, happy two and a half year old little girl who loves clothes, bracelets, Barbies and her big brother! And we adore watching her grow, explore and learn every day. I thank God and everyone who help in giving us our miracle!