Fighting for Phoebe: Our 13 oz Miracle Baby

In the fall of 2024, my husband Bryce and I were thrilled to learn we were expecting our first baby, a little girl, due in May 2025. But on January 9th, at just 21 weeks pregnant, a routine follow-up ultrasound turned our world upside down. The doctors saw that there was intermittent absent umbilical artery end-diastolic flow, meaning the blood flow from placenta to baby was not consistent. She was also measuring extremely small and was categorized as severely growth restricted. Additionally, I had high blood pressure, something not present at previous appointments. Doctors diagnosed me with severe preeclampsia and were uncertain if they would be able to get me to periviability which was 22 weeks at OHSU.

I was admitted to the hospital immediately and told by every doctor that my baby would very likely not survive and that my life was at risk. Every day while I was in the hospital, Bryce and I had to weigh the decision of whether or not to keep me pregnant to give our baby the best chance of survival all while monitoring my declining health. Just two weeks after being admitted, the maternal fetal medicine team told us that delivery was necessary to keep me alive.

On January 23rd, 2025, our daughter Phoebe was born at 23 weeks and 4 days — weighing only 13 ounces and measuring 10 inches long which is closer to the size of a baby at 21 weeks gestation. She was so tiny that the doctors weren’t sure their equipment would even work for her, but after 2 attempts they were able to successfully intubate her.

These past seven months have been filled with more ups and downs than we could ever imagine. She’s experienced a brain bleed, multiple infections, countless blood transfusions and x-rays. She's been so sick that she's required paralytic drips for multiple days on four separate occasions. At the beginning she struggled with necrotizing enterocolitis (NEC) and she was diagnosed with retinopathy of prematurity (ROP) an eye disease that could affect her vision long term. Her biggest struggle has been BPD, bronchopulmonary dysplasia. This is a chronic lung disease due to her prematurity that has left her lungs so weak and damaged she cannot support herself without the help of a ventilator. She has never successfully been extubated.

After discussing with the doctors and weighing our options on what would be best for Phoebe, we decided to go forward with a tracheostomy. On July 10th, she had tracheostomy surgery to support her breathing long-term and a g-tube tube placed for feedings to give her the nutrition she needs. These surgeries were intended to help stabilize Phoebe to progress developmentally and beginning planning a path towards bringing her home. The trach has healed well, but complications with the g-tube have caused major setbacks. Her stomach has prolapsed from her g-tube site and we are at a point where she will need to go back to the OR to either revise it or take the tube out completely. We are unsure which route we will go and when that surgery will happen. Currently Phoebe is on a paralytic to prevent further prolapse as we await to hear from the surgeons in coming days about the best plan of action moving forward.

Aside from her precarious birth, we have nearly lost Phoebe more than once. Moments where the room filled with doctors and alarms and all we could do was stand by her side watching and hoping. Where the doctors told us she is very sick and they are running out options to help her. Those moments weigh heavy on our hearts and have left us living in constant fear that we might not get another day with her. Through some miracle she has defied the odds and fought through every challenge thus far. Phoebe is more than a fighter — she is a survivor. Every single day, she shows us a strength beyond the small size she entered this world as. Her future is still full of uncertainty as we don't know when she'll come home, how long she'll need the ventilator and trach (likely multiple years), or the long term impacts of her medical complexity on her development. We are sharing our story in hopes of building a community of support around her and easing the burdens that will come with the next stage of this journey.

While we don’t yet know when Phoebe will be able to come home, we do know that when she does, she will need various medical equipment/supplies and ongoing 24/7 specialized care and active supervision. This is all on Bryce and I's shoulders as home nursing coverage and availability is never guaranteed. Between her extended hospitalization, my limited maternity leave, and the costs of preparing our home and lives for a medically complex child, we are facing financial challenges on top of the emotional and physical ones.

Donations will help cover the cost of various things including:

If you feel called to help, whether through a donation or by sharing our story, we are so deeply grateful. Your kindness will help us get through the rest of our

NICU stay and eventually give Phoebe the safe, loving homecoming she deserves.

With love,

Emily & Bryce

If you would like to donate outside of this organization

Venmo: @emily-pakulak last four digits 6008

Cash app: $EmilyPakulak

Babylist registry: https://my.babylist.com/niefphsqk