Jennifer Baldasso from St. Louis, MO had an unexpected gift for her 30th birthday in December 2020. She found out she was pregnant with Baby #2. Her first pregnancy 3 years prior was a complicated one. She delivered a 37-week miracle who was born not breathing due to complications with an infection. She spent 2.5 weeks in the NICU, but fortunately now is a healthy, happy 3-year-old. Despite how well her daughter was doing now, Jennifer couldn’t help remembering the fear and anxiety surrounding her delivery and first few weeks. Once this pregnancy was confirmed, both Jennifer and her doctor agreed to treat this pregnancy as “normal” unless there was a reason not to.
Jennifer was seen a couple of times between December and April. Her visits were limited and virtual due to the pandemic. Everything was going smoothly between visits until she was approximately 20 weeks pregnant. In April, during her anatomy ultrasound, Jennifer asked the ultrasound technician to place the gender result in an envelope. She noticed that the tech kept was taking an exceptionally long time. After what seemed like forever to Jennifer, the tech left the room and returned with a physician. The physician began asking Jennifer questions about how she had been feeling – if she had had any cramping, labor pains, or leaking of fluid. Upon exam, the physician noted that Jennifer’s cervix was dilated almost 2cm. She had also lost her mucus plug. She was sent for emergency cervical cerclage, which is the placement of stitches in the cervix to hold it closed. The procedure is used to keep a weak cervix from opening early. When a cervix opens early, it may cause preterm labor and delivery. The surgery was successful, and Jennifer was placed on bed rest the remainder of her pregnancy. She was seen every week after that, and it was crucial she made it to 26 weeks. She experienced multiple complications, seemingly something new each week, including ruptured membranes, broken water, low fluid and Chorioamnionitis, Chorioamnionitis is an infection of the fluid-filled sac that surrounds the baby. It can cause a dangerous blood infection in the mother called bacteremia. This bacteremia can cause the baby to be born early, and it can also cause serious complications in the newborn including infection (such as pneumonia or meningitis), brain damage, or death.
Jennifer delivered Hailey alone with only doctors and nurses on Saturday, 5/30 at exactly 26 weeks. “There were so many people in the room,” said Jennifer. The one familiar face she noted was that of neonatologist, Dr. Justin Josephsen. Jennifer had met him at St. Mary’s during her multiple triage visits. Hailey was a micro preemie weighing in at 1lb 10oz and 12 inches long. She was immediately transported to SSM Health Cardinal Glennon Children’s Hospital’s Neonatal Intensive Care Unit. Following Jennifer’s delivery, she, herself, encountered complications. She had placenta accreta, a condition where the placenta grows too deeply into the uterine wall. Typically, the placenta detaches from the uterine wall after childbirth. Jennifer’s was remaining attached. She started hemorrhaging blood and lost consciousness. She was rushed to the operating room for an emergency hysterectomy and given multiple blood transfusions.
Jennifer was aching to see Hailey, as she did not have opportunity to see or hold her after delivery. While the hospital wanted to keep her for a week following her hysterectomy, Jennifer was discharged two days later and made her entrance to the NICU Monday, June 1st. “A nurse wheeled me up, and reality started to sink in. She was on CPAP (a treatment that uses mild air pressure to keep your breathing airways open) but she did not have a breathing tube. She was so critical because her organs and systems were so underdeveloped.
About 2-3 weeks into her NICU stay, Hailey developed Klebsiella pneumonia. She required intubation, and within a very short period, maximized the settings on her oscillator (a softer mode of lung ventilation, which can reduce ventilator-induced lung injury). Hailey’s team arranged a care conference with Jennifer and communicated to her how gravely sick Hailey was. They discussed over and over at this conference and others that would follow, the sobering reality that if she survived, she still had months and months of hard work ahead. “I was numb,” said Jennifer. “It was hard to know what to feel. I hadn’t even gotten to hold her, really, because she wasn’t stable. I hadn’t gotten to bond with her,” Jennifer said. In the weeks and months that followed, several methods (steroids, nebulizer treatments, multiple ventilator types and settings) were tried to support Hailey’s immature lungs. She had bronchopulmonary dysplasia (BPD), and her team remained vigilant to try whatever options were available. BPD is caused by damage to the delicate tissue of the lungs. This damage most often occurs in infants who have required extended treatment with supplemental oxygen or breathing assistance with a machine (mechanical ventilation). In BPD the lungs and the airways are damaged, which causes further tissue destruction in the tiny air sacs of the lung (alveoli).
Jennifer spent much time thinking about “why” this had to happen. She had lost her grandmother in February 2020 – the grandmother that had raised her. As a young adult in her 20’s, Jennifer helped care for her aunt and grandmother, who both, ironically, required oxygen. She remembered thinking of how difficult it was and how she looked forward to “never having to deal with that again” once they had passed away.
Eventually Hailey worsened further. She also kept trying to extubate herself. “She was miserable,” said Jennifer, “and I wondered what quality of life she even had.” Jennifer had two weeks to make a decision. The question she faced was, “Do I give up on her, or do I take a chance with a tracheostomy?” She admitted that she was dealing with post-partum depression. She was unable to work with all the unknowns, she was a single mom, COVID brought so many additional barriers, and there was a roller coaster of emotional, mental, physical and financial stress. “I had to beg people to watch my 3-year-old daughter. I had utilized all my babysitters to their max. I also missed her terribly. Juggling it all on my own was more than I could take on most days,” said Jennifer. “I was running out of patience, ideas, energy, time. Life outside the NICU didn’t stop. It was getting better. It was getting worse. But Hailey hadn’t given up, so I couldn’t either,” Jennifer said.
Jennifer agreed to tracheostomy placement and Hailey had that surgery plus a gastrostomy tube (feeding tube in her stomach) placement on September 24, 2020. That surgery brought some newfound “freedoms” for Hailey that brought both her and Jennifer some peace. Hailey’s face was finally free from respiratory equipment and tape, and she was able to move her arms freely. “She seemed so much more at ease – almost like a different baby,” Jennifer said. “I needed that, I think,” said Jennifer, “because I had really gotten to where I had almost un-bonded from her.”
The winter months brought additional infections like rhinovirus, lots of tweaking with ventilators, and lots and lots of therapies (occupational, speech and physical therapies). “I relied heavily on Hailey’s primary nurses. They were everything to me and my daughter. The walls of that NICU heard more prayers than churches,” said Jennifer.
“The goal for Hailey was to keep growing and not get sick,” said Jennifer. “We needed to get her on a home ventilator that worked for her, and then work towards a transfer to Ranken Jordan Pediatric Bridge Hospital, which would help transition her from hospital to home,” Jennifer said. “I was able to take a tour in February. It was a bit overwhelming to think about leaving Cardinal Glennon, but I knew that was the next step to take before being able to bring her home. Hailey’s big sister and I are living with my grandfather. We will not only need to move out and find a home of our own, but it will need to be suitable for all of Hailey’s needs and also be in an area where home nursing is available. As long as she is on a ventilator, she will need nursing 24 hours/day,” said Jennifer. “And with me not working, and being a single mom, I’m relying on a lot of prayer and lot of community support.”
On March 3, 2021, after 277 days in the NICU, Hailey made a huge, celebrated exit from Cardinal Glennon and began her next chapter at Ranken Jordan. The staff began “weaning trials” of her oxygen and ventilator pressure support and focusing on her developmental therapies. “We have a long way to go and still have awhile before she would come off her ventilator. She has some growing still to do and will continue to need lots of therapy,” Jennifer said. “We will come back to Cardinal Glennon to see all of Hailey’s specialists. She sees Pulmonology, ENT, and Nephrology among others, and we, of course, like to visit with our NICU, Child Life and Footprints family,” said Jennifer.
Summer Update: Hailey continues her therapies at Ranken Jordan. She has hit 50% on the growth chart and is doing well on her current vent settings. “She is talking around her trach and becoming quite the social butterfly. She is interacting more and more and almost sitting up on her own! Despite all this little warrior has been through, she is literally the happiest baby I have ever seen,” said Jennifer. “We are hoping to get her vent settings down a bit more, and then we will be able to trial her being OFF the ventilator. Life is still crazy outside of Hailey’s stuff between my own health issues, my other daughter, trying to move, and more. I’m ready for a new chapter, and one where we are all at home together. I am grateful for the family that I have in Cardinal Glennon. They remain such a source of support for me and have shared and supported me through all the ups and downs from the beginning,” Jennifer said.
Most recently, Jennifer started a team for Cardinal Glennon’s annual Sun Run: Hope for Hailey. “We wanted to raise money for our home away from home. Cardinal Glennon has done so much for us, and Hope for Hailey is one way we can give back,” said Jennifer.