Evee Belle Greyeyes. Born May 1st 2022 at 0404 AM. 561 grams birth weight and 23 weeks and 4 days gestation.
My daughter’ story begins April 11th when I first experienced a hemorrhage and was rushed to JPCH via ambulance. Driving towards the hospital I was not sure if my baby was still with us or not - I was devastated upon admission. My fears were then calmed down for a short minute when the doppler proved a heartbeat.
A resident had come into my room and told me that it was best she did a cervical check to see if I was dilating or not. Once she finished the exam, she told me and my partner that we were most likely miscarrying. Tears poured down my face as I was taken to another part of the maternity ward and given a room. For 4 days, I stayed on the assessment unit and was discharged once an ultrasound had proved nothing was wrong with our baby that they can see and to go home and rest. I was taken off work for the remainder of my pregnancy at this time. I went home happy to know that my baby was ok but also scared as I felt something deep down was not right. I had a feeling that I was going to have my daughter early and it was hard for me to make sense on why I had a hemorrhage as I was given no answers in the hospital as nothing was showing up on the scan.
From April 24th to 30th I went to JPCH every day asking for help as I was in immense pain. It felt like I was in labour for seven days. The pain I felt took the life out of me. Each visit to JPCH maternity ward ended with a discharge and a reassuring note that nothing was wrong with our baby - I was told the pain was coming from bladder spasms or kidney stones and I was discharged each time on Tylenol and told to get rest. April 30th was different as the pain was every few minutes and the bleeding increased. I was admitted to the ward once again for monitoring.
At 2 am that night the pain became unbearable and I asked for pain control and it provided no relief. I was then told I needed another cervical check, which proved I was 3 cm dilated. When I arrived to the room, I was greeted by the NICU team, I remember feeling so relieved they were there.
Evee arrived at 0404 AM - she arrived still encased in her amniotic sac. My placenta was birthed with her and I later found out that I had a complete placenta abruption. What I am about to type is something that is very hard for me to look back on as Evee was born with no heartbeat. She was resuscitated and then intubated immediately and she was whisked away so fast that I was in denial that she was even born. It was too fast, I was dreaming, it had to be a dream - right? I later asked my nurse when my baby was going to be born as I was in shock and in complete disbelief that I had a baby in the NICU. Once Evee and my partner went up to NICU I was alone in the room for a short minute yet felt a very warm hug. I still wonder who was our guardian angel that night.
50/50 they said in a meeting when I asked about her chances the following day. 561 grams (1 pound and 3 ounces) in weight and 19 cm in length - she was smaller than my hand. I was told by a nurse to "buckle up because it's a ride." I didn't understand what she meant by that statement at the time but now I do. NICU is a roller-coaster. Every day after that was a fight to live, I was so overwhelmed by the number of infusions that were running into my daughter, the ventilator scared me, her blood sugars were out of control.
Day 3 we were told that Evee suffered a grade 2 brain bleed and that the outcome of the brain bleed would not be noticeable until she starts to hit certain milestones. I struggled with this diagnosis as there was no answers and no treatment other than monitoring. As the days went on in the NICU we then found out that Evee's brain bleed had advanced to a grade 4 with hydrocephalus. Currently Evee has not required a shunt and the pressures in her brain have stabilized - she continues to be monitored and has another MRI booked for the near future.
Day 7 (Mother's Day) me and my partner walked into NICU to find out Evee suffered a spontaneous intestinal perforation and required an abdominal drain to be inserted immediately. Later on, the intestinal perforation required surgery for a temporary ileostomy, which later prolapsed and required a reversal surgery six weeks later. Evee was NPO (nothing by mouth) for more than 80 days out of 130 of her NICU stay - she was fed via TPN (total parental nutrition).
Day 10 was one of the hardest days we had in the NICU. A Neonatologist grabbed a chair and sat down to talk with me and I immediately knew it wasn't good. She drew out a picture of why my child is a complex case. It was explained to us that Evee had an open PDA (patent ductus artiosus) that was large and causing a lack of blood flow to her intestines which was inhibiting the perforation to heal. At this time Evee was also being treated for an infection as a blood culture had come back positive. This on top of the brain bleed was causing Evee to decompensate fast. The month of May was so touch and go but our tough little girl fought on. Evee received 3 rounds of different IV medications to attempt to close the PDA which all failed. Six weeks later the PDA closed on its own. Once the PDA closed, we seen massive improvements in Evee.
Evee was intubated for 74 days and was diagnosed with chronic lung disease. The day she was extubated was one of the best days I had in months - I finally got to see what her face looked like! I never seen her face without the tapes up until that moment. What a beautiful daughter I have! Evee remains on oxygen today and will be revaluated in the next coming months.
In the middle of August, we hit another setback. When Evee required the surgery to reverse the prolapsed stoma and she was reintubated for more than a week. Once she was extubated, she started to have seizures or spasms that have yet to be diagnosed. Evee remains on seizure medication and has a lot of follow up to monitor.
Evee has also been diagnosed with Stage 2 ROP (retinopathy of prematurity) and requires many eye exams monthly. She is such a tough baby during these exams and it always surprises me on how much she can go through yet have a smile on her face.
After a dozen blood and platelet transfusions, an abdominal drain, two major surgeries, countless ultrasounds and x-rays, an MRI, 6 picc line insertions, too many blood draws, 3 intubations, and many days on antibiotics: Evee finally got the clear to go home. 130 days Evee spent in the NICU and she was finally discharged on Sept 7th 2022! It was the most beautiful moment of my life to see my daughter graduate from the NICU. The staff did a wonderful job taking care of our family and celebrating our departure - they announced her graduation over the intercom and all of the staff came to applaud us as we walked out. I cried the whole entire time. We now have been home for more than 2 weeks and we are loving it!
I cannot say enough of the staff that work in the NICU - they saved my daughter's life - I will never be able to say thank you enough. They all stood by my side in the darkest moments of my life, they hugged me, encouraged me, helped me put on a brave face. They were the soft spot I needed when I fell. They treated my daughter as if she was their own. I cry when I think of them because of how supportive they were towards me. I hope to carry their courage and kindness with me as I continue this journey with my daughter.
Evee is now almost 5 months old (4 weeks corrected) and loves to be at home with her mom and dad! She is a smiley baby and she is so loved. We are so blessed to have her in our lives. Only the future will we find out what Evee will be faced with, but we are ready for whatever comes our way as our love in our family will prevail. She is a strong baby and has overcome so much already - she inspires our family!
Small but mighty!