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Tiffany Hall’s difficulties with her second pregnancy began at her 20-week ultrasound, when doctors noticed that her baby was barely growing.
Four weeks later, the growth was nonexistent. As was the case with her first child, Tiffany developed preeclampsia, a serious condition in which a pregnant woman’s blood pressure becomes highly elevated.
Worried about how underdeveloped her baby would be if she had to give birth so prematurely, Tiffany hoped to make it to at least 30 weeks of gestation, but things were getting too risky for both. At 26 weeks — 14 weeks premature — Tiffany gave birth to baby Juniper by cesarean section at UnityPoint Health – Meriter in Madison.
The baby, who would be named Juniper, weighed slightly less than one pound and was just 10.4 inches long. This is not a typo.
“She really didn’t look like a baby,” Tiffany says. “You could see right through her skin. She had these little Barbie Doll-size arms. Her first footprints were about the size of the knuckle on my thumb. Her entire hand covered the tip of my fingernail. You’ve never seen such a tiny little being.”
Preemies typically need intensive medical care, but Juniper’s ability to overcome one health scare after another not only speaks to her instinct for survival but her family’s passionate commitment to keep their baby girl alive.
“Juniper had a rockier course than most babies born at 26 weeks,” says Dr. Jamie Limjoco, medical director of the neonatal intensive care unit (NICU) at UW Health’s American Family Children’s Hospital in Madison.
Topping Juniper’s list of challenges were her severely underdeveloped lungs, making her especially prone to infection. She also had a serious brain bleed, and something called a PDA, an opening between the heart’s two major blood vessels. Fortunately, the brain bleed finally stopped on its own and the PDA closed with the help of medication.
Because her lungs were so immature, Juniper needed a breathing tube right away. Her first few months included two bouts of pneumonia and numerous emergency “bagging” episodes in which air is forcibly pumped into Juniper’s lungs using supplied oxygen and a special rubber bag.
“Every day felt like we were watching her die in front of us,” says Tiffany. “Seeing her turn blue and clench her little body up was so hard. My husband, Kurt (Splettstoesser), did such a wonderful job repressing his own emotions and keeping me stable.”
At 3 months old, Juniper was transferred from UnityPoint Health – Meriter to American Family Children’s Hospital, where a wider array of respiratory support options is available.
She wasn’t growing, so a tracheostomy tube was placed
“Junie wasn’t growing because she was using whatever energy she had just to breathe and stay alive,” says Dr. Limjoco. “Eventually, we started talking with Juniper’s family about a tracheostomy, which is a surgical procedure that places a “trach” tube that sends a steady supply of air into the neck, just below the vocal cords. Generally speaking, a trach is safer than a breathing tube and provides a better, longer-term foundation for a baby to grow.”
Tiffany and Kurt were reluctant at first, hoping that just another week or two with the breathing tube might buy just enough time for Juniper to breathe on her own.
Unfortunately, this did not happen, and Juniper still wasn’t growing. Clinically speaking, Junie was failing to thrive. After talking with multiple NICU doctors, nurses and therapists, Juniper’s parents finally agreed to schedule the tracheostomy.
“Having a trach is a very big decision for every family,” says Anne O’Kane, RN, the tracheostomy coordinator at American Family Children’s Hospital. “Babies who need a trach and ventilator require a great deal of monitoring, a lot of equipment and constant contingency planning for emergencies. The team felt Junie would be safer with a trach for the long term. It would also be the only way Junie could go home.”
In April 2022, Juniper received her trach at 5 months of age. During the surgery, doctors also inserted a G-tube into her belly for feeding.
Junie’s road remained bumpy for a while, fueling Tiffany’s questioning whether she and Kurt did the right thing.
“After the trach was put in, Juniper had a few infections and just seemed uncomfortable much of the time,” Tiffany says. “We asked ourselves if we agreed to the trach only because we knew it was the only way she’d come home.”
Because kids with a trach exhale through the tube rather than pass air over their vocal cords, Junie cannot make speaking sounds.
“You know when she is happy based on her facial expressions,” says Tiffany. “As my son Aiden says, it’s like she’s always on mute.”
In May 2022, Junie finally graduated from the NICU, moving to the intermediate care unit at American Family Children’s Hospital — a clear sign that things were improving.
“Her good days were great days,” says Dr. Limjoco. “It was wonderful to see Junie when she was a happy ball of fire.”
Despite challenges, Tiffany was passionate about breastfeeding
Most babies on a trach find it difficult to breastfeed, but Tiffany’s commitment to breastfeeding was unshakable, despite so many challenges.
“From the beginning, I wanted to pump and build up a big supply of milk for her,” Tiffany says. “I knew the antibodies would be good for her, especially being such a preemie.”
Tiffany also relishes the pure joy of a satisfied baby after a feeding.
“It is amazing to see how happy she gets during a feeding,” Tiffany says. “After everything we have been through, seeing her pause for a moment and give me a big gummy smile is so rewarding.”
Laura Wilson, a lactation consultant at American Family Children’s Hospital, was amazed by Tiffany’s commitment to ensuring that Juniper would have an ample supply of breast milk.
“It’s a huge amount of work,” Laura says. “For the first several months, Tiffany pumped 8 to 12 times a day, and this includes cleaning the equipment each time. Despite the challenges, Tiffany knows that breastfeeding offers a deep connection between mom and baby that goes beyond nutrition. With the help of our speech therapists, who help babies learn how to safely feed and swallow, we worked as a team to support Tiffany and Juniper to make breastfeeding a success.”
After 244 days in the hospital, Junie came home!
Perhaps the best part of Junie’s journey came on July 19, when she finally came home after spending the first 244 days of her life in the hospital.
After 244 days of life split between two Madison hospitals, Juniper finally went home on July 19, 2021.
“It was so incredible,” recalls Tiffany. “American Family Children’s organized a parade for her and lined the hallway with ribbons. Music was playing and bubbles were filling the air. A friend of mine made a cute little graduation cap and gown for Junie. We were so excited.”
Since getting settled in their new home, Junie has gotten out for some neighborhood walks, trips to the grocery store and a visit to the zoo. All the emergency contingency training the family went through paid off too, as Tiffany and Kurt successfully rescued Juniper from a few stressful events on their own without having to call 911.
“It’s quite a process to take her out of the house,” Tiffany says. “We bring two diaper bags, a ventilator bag and an oxygen tank,” says Tiffany. “We also need one driver and another trained adult sitting with Junie in the back seat.”
In addition to the excellent care that her baby received throughout 8 months of hospitalization, Tiffany can’t say enough about how accommodating UW Health doctors, nurses and therapists have been whenever concerns surfaced.
“Everyone has been so amazing, especially when it comes to taking my input seriously as a mom,” she says. “Even if I missed a day’s morning rounds session, I could always sit down with a doctor and ask my questions or offer suggestions on what might be going on. Listening can often be the greatest gift a doctor or nurse can provide, and here it happens all the time.”
For Dr. Limjoco and her team, seeing a baby with as long of a journey as Juniper’s is definitely worth celebrating.
“Babies like Juniper highlight the capabilities of a Level IV NICU like we have at American Family Children’s Hospital,” says Dr. Limjoco. “To see tiny little Junie get to finally go home is a success story that makes all of us very proud.”