Lucien was born July 25th, 20025, to a very happy Mom. Unfortunately, instead of being handed the healthy, crying baby she has hoped for and expected, Lucien’s Mom Mary was quickly thrown into the world of the NICU.

During pregnancy, Mary developed anemia both symptomatic and severe enough that her doctor ordered iron transfusions. Unfortunately, insurance denied the infusions though it

was already very late in the 3rd trimester so she’d had to push through the anemia without treatment. Incredibly, Mary not only managed pregnancy with symptomatic anemia but while also working,caring for her niece and nephew, suffering from carpal tunnel, and completing a post-graduate program! Then, as if that wasn’t enough, she unexpectedly developed symptomatic hypoglycemia (low blood sugar) requiring a continuous glucose monitor.

Lucien, however, showed nothing of concern at OB appointments and Mary looked forward to meeting him. Mary had a scheduled, medically-necessary induction July 24th. While labor was relatively quick, it was not without significant concern for Lucien. His heart rate dropped with each contraction, leading her OB to stay with Mary continuously for 3 hours to keep an eye on Lucien’s heart rate. Until, that is, his heart rate starting dropping to 60 (normal is 110-160). At this point, delivery became an emergency. While talks of an emergency c-section were being discussed the OB use a vacuum to aid in Lucien’s birth and thankfully, it worked.

Upon Lucien’s birth they realized his low heart rate was because his umbilical cord was wrapped around his right wrist. He wasn’t crying and looked dusky. Thankfully his doctor and nurses were able to help him right in the delivery room. They worked on Lucien for some time and finally let Mary meet/see him,only long enough for a photo, before whisking him to the NICU with respiratory distress. The meconium in his amniotic fluid, that was a reaction to him being in distress, led to Meconium Aspiration Syndrome (MAS) after unintentionally breathing it into his lungs upon delivery.

Lucien required CPAP to help him breath. He wore the CPAP as a mask and it pressurized air so he could keep breathing. He also needed added oxygen. Then he was connected to the NICU monitors, hooked up to an IV, and had an oral-gastric feeding tube (OGT) placed. He received sugar drops through his OGT but was not to have feeds for the first 48 hours and Lucien showed his disapproval of by removing his OGT. During this scary time, Lucien was without his Mom and Mary wasn’t even getting updates on her newborn son. In fact, at one point, when Mary asked about Lucien, she was told that her nurse was on break and they didn’t know what was going on with her son

Finally, 7 hours after delivery, Mary got to visit Lucien in the NICU. She was told that they needed to transfer him to another hospital; it turned out to be a hospital 2.5 hours away in Tacoma. So, while everything was getting prepped for Lucien’s trip, Mary was allowed to hold him. Then, at 8 hours old, he was taken by ambulance to the local airport and from there flown by helicopter to the other hospital.

Mary wanted to go with Lucien but she herself was still a patient so she couldn’t even meet him there. To make matters worse, she was not told that he arrived safely or was settled in. In ‘Mommy mode’, Mary fought to get discharged so she could be with Lucien and headed home a mere 10 hours after giving birth. Unfortunately, being unable to safely drive and with no other means of getting to the new hospital, she got a ride home and slept that night with a plan in place: a friend would drive her and her mom to the hospital the next morning. So, at 8 a.m., only 26 hours post-partum, she rode 2.5 hour to Tacoma to see Lucien and stayed the night with him in a recliner.

Two days later, still in NICU, Lucien continued to require assistance breathing; despite being supported by CPAP and oxygen, his breathing rate was faster than it should have been (tachypneic). As he proved he was stable, the NICU nurse twice tried to wean him off CPAP but he began having retractions (a sign of troubled breathing). Then, when Lucien was 40 hours old, the CPAP cap finally came off and Mary saw his full head of hair for the first time.

The following day, Sunday 27th, he was still off both CPAP and oxygen. He seemed to be doing ok despite continuing tachypneia. Lucien went about 40 hours without respiratory support but Monday night into Tuesday morning he started to have trouble breathing and was placed on high flow oxygen.

Despite the oxygen he continued struggling to breath and was placed back on CPAP on Tuesday (Mary’s birthday).

Wednesday, while Lucien is stable on CPAP, Mary reluctantly stays at a friend’s house for the night. Thursday arrives and happily, he is able to be weaned off CPAP and back onto high flow oxygen! Then Friday, August 1st, Lucien turned 1 week old.

Unfortunately, they have been unable to wean him since then. While they have tried, whenever his supplemental oxygen is decreased, even by as little as 1%, he gets in distress and needs the oxygen bumped back up.

This roller coaster of improvement and decline has Mary thinking they need to look at Lucien’s heart. NICU nurse practioners tell her Lucien doesn’t meet the criteria to warrant an echo (ultrasound of the heart). So, with no explanation as to why, he keeps improving and declining, Mary continues to stay over in NICU and push Lucien’s providers for answers.