With the passage of her original due date on 3/21, Olivia continues in her long journey of recovery from premature birth. Although she still requires an inpatient level of care, she is starting to show signs of strong development. She can open her eyes and she responds to us and her nurses when we interact with her.
Olivia’s main obstacle to coming home is called Bronchopulmonary Dysplasia (BPD). In simpler terms, BPD is essentially chronic lung disease caused by prematurity. It is a condition that she should outgrow with time and ongoing lung development, but Olivia may need ventilator support for several more months. This requirement creates a difficult situation for us as parents in terms of supporting her cognitive and motor development during the first few months of her life.
Right now, Olivia is receiving ventilator support through an oral breathing tube, which requires her to be medically sedated and tightly swaddled at all times. This is due to the fact that the oral tube is highly irritating to Olivia, and she would pull the tube out if not sedated. Keeping Olivia heavily sedated and tightly swaddled makes it difficult-to-impossible for her to sustain age-appropriate development. We are worried that keeping Olivia intubated for several more months or possibly longer will have a permanent impact on her development.
At this time, we have decided to move forward with a Tracheostomy to support her development while facilitating her breathing requirements. This is a decision we have taken a long time to make and have done so at the recommendation of Olivia’s doctors.
The tracheostomy procedure is an intense surgery with a difficult recovery, and long-term implications for the entire family. The tracheostomy essentially places a tube into Olivia’s wind pipe under her vocal cords. That tube then is attached to the ventilator, allowing Olivia’s existing breathing tube to be safely removed. As part of this process, Olivia will also need a G-tube placed in her abdomen for feeding. While this usually happens in the same procedure as the tracheostomy, Olivia may require a second procedure to place both interventions. Once the procedure is completed, she can be weaned from her sedation fully and will be awake, developing, and interacting with her environment. The recovery from surgery and weaning should take a few weeks at Boston Children’s Hospital.
Once she recovers, Olivia will be discharged to a rehab facility in Brookline (Franciscan Children’s Hospital) that focuses on development and care for children with Tracheostomy tubes. We will need to become fully trained in how to take care of her tubes and ventilator before she is ready to come home. We will need to work directly with the team at the rehab hospital to plan for her care once she comes home. This makes the timeline for her return home difficult to anticipate, but we are currently projecting out to a July homecoming if all goes well.
Once home, Olivia will need direct supervision around the clock, and we will receive home nursing to assist with our everyday needs. We are still discussing how we will need to adjust our working plans and home living style to accommodate Olivia’s needs. Olivia will have a portable ventilator, but we will likely only leave home with her to receive medical care at first. She similarly will need to be kept safe from infections and viruses, as the respiratory implications of her getting sick are much more serious than we are used to. Over time, we expect Olivia’s respiratory support to decrease and for her to have a more normal childhood.
Olivia’s doctors have been clear with us about the implications of the tracheostomy tube. The vast majority of tracheostomies are temporary, but there is a small chance that the tracheostomy will be permanent. The removal of a tracheostomy tube is also a difficult process and depends on factors ranging from Olivia’s developmental needs to the severity of the cold and flu season. We are anticipating that Olivia will have the tracheostomy tube for anywhere from 1-4 years.
This process has been exhausting for us, and the tracheostomy decision is excruciating. By going with the tracheostomy, we are committing to years of intense medical care following a major surgery, rather than risking potential permanent developmental problems. We knew parenting would involve difficult decisions, but we never expected it to be quite this hard this soon. We can never know for sure whether this is the right decision, but we are hoping that Olivia’s tracheostomy will let her experience life as a baby and live a somewhat normal childhood within a few years.
Olivia has shown us so much in the time she’s been alive. Her feistiness, playfulness, and curiosity are a big reason why we are deciding to protect her long-term developmental path with such a serious intervention. Olivia has a bright future ahead of her, and we know she’s only just begun to show us what she can do.
Becky and Max,
We have been following Olivia’s progress on her website. While we can’t imagine how difficult it has been for the two of you, we strongly support the decision you have made. Olivia does seem to be a fighter! Hopefully, this will all play out for the best in the end, but it will take courage to get there, so fight the good fight and know that there are lots of people wishing you well.
All the best,
Noreen and Steve
Big big big big big hugs to you guys. You’re doing awesome. Olivia is lucky to have such amazing parents
You two are remarkable and wonderful parents. Your love for beautiful Olivia shows in everything you do.
Love and hugs from the Hnatowiczs
You guys are amazing! Olivia is lucky to have you as her parents.
You have all been given a tough start, but all you can do it put one foot in front of the other and march forward.
I’m sure it was difficult, but I truly believe you have made the right decision. You will experience such joy with every bit of progress she will make. Still praying for you all.