Bentley - Our Little Heart Warrior

Hi, my name is FayeAnne and I am the proud grandma of Mr. Bentley William (aka Mr. Man/Bubby). As most of you know, our little boy was born with a severe narrowing in the aorta of his heart. He has already undergone one surgery at Children's Hospital four days after his birth, and things were looking great. But, unfortunately, last week, they were told he may have to have another surgery or a stent put into his heart, which the family is looking at as a small penalty on the run to his final touchdown. So, with the unforeseen expenses that came with his surgery and hospital stay, in addition to time off of work for Jazi and Alex, we are asking for a small donation to help support the Phillips' family during Bentley's heart journey.

Here is their story:

After being told Jazi and Alex would have difficulty having children on their own, they were scared yet optimistic that one day their dream of seeing those two pink lines would come. In September of 2021, this dream became a reality! Jazi had quite the rollercoaster of events throughout her pregnancy but stayed positive, knowing she was carrying and growing her beautiful baby boy, Bentley. At her 20-week anatomy scan, her high-risk fetal specialist noticed an abnormal light up in her son's heart while checking the blood flow. The doctors, as well as Jazi and Alex, maintained positive in hopes that it was nothing. A month later, the specialist scheduled another echo of Bentley’s heart in utero and stated that he had noticed a narrowing in the aorta of his heart. Exactly one week from this appointment, Jazi and Alex began their journey to the Children's Hospital in Milwaukee to meet with Maternal-Fetal Medicine, Bentley’s new cardiologist, and a high-risk OB. At this appointment, they did another echo to confirm this heart defect. Although they hoped to be sent home with no news, that was not the case. At 22 weeks gestation, Bentley was diagnosed with a Coarctation of his Aorta and the new parents were told their baby would have open heart surgery shortly after birth. Terrified, they made the best out of the rest of the pregnancy and anticipated the day of their beautiful boy's arrival. On May 5, 2022 at 9:30 in the morning, Jazi and Alex welcomed the most perfect little boy into the world. After thoroughly examining Bentley in the delivery room, the new and joyous mom felt her baby boy on her chest and knew their lives had changed forever.

After four days in the NICU, Bentley was moved to the cardiac ICU which became his new home for the next seven days. On May 9th, Bentley was rolled out of his hospital room and into the OR to have open-heart surgery. After what seemed like the longest four hours of their life, Jazi and Alex received a call that surgery was over and everything went great. They were able to meet him in the hallway on the way back from the OR, smother him with kisses, and wait until they got the call that he was ready for visitors. The sight of baby Bentley intubated with a chest tube, feeding tube, and two poles full of medication keeping him out of pain and sedated broke the new parents hearts. This was a pain they could never have imagined having to experience. During surgery, the surgeon said although Bentley had an extreme narrowing of an area in his aorta, the whole aorta itself was smaller than it should be. This was an issue that could potentially fix itself, so it was something they told Alex and Jazi they would watch closely.

The next few days, little Bentley made so many first downs during his football game. His touchdown was leaving the hospital big and strong. Everything was going so smoothly the first few days in the Cardiac ICU. Bentley was eating more than they were expecting and was able to come off some medications early. He was extubated and had his chest tubes out sooner than they were expecting as well. This little fighter proved to the doctors and nurses that heart surgery was a piece of cake. Unfortunately, although things were going great, Bentley began going into arrhythmia multiple times a day. His average heart rate was about 140-160; during these arrhythmic episodes, his heart rate would surpass 300 for a few minutes. Although this caused Bentley no pain, they wanted to stop these episodes from happening to allow his freshly post-surgical heart to heal without being overworked. After a few different trial runs of medications, they could maintain an average heart rate with Propranolol. Bentley will remain on this medication for a few years, hoping to be taken off eventually.

On May 17th, Bentley finally reached his touchdown and was able to go home and learn what life is like outside of the beeping and lights of a hospital room. Bentley was doing great for about two months. He had no signs of distress, pain, or discomfort. He had multiple appointments with his pediatrician and cardiologist and passed exams with flying colors. Unfortunately, on July 1st, during an echo at Children's Hospital, the cardiologist noticed that Bentley’s aorta was still small in size, restricting the blood flow to the lower extremities of his body. Bentley’s cardiologist stated that due to this restriction, Bentley will either need to have a stent put into his heart or have yet another open-heart surgery to repair his aorta for a second time. Bentley is scheduled to have a sedated Echo in Milwaukee on July 11th for him and the surgeon to look at together to decide which option would have the best result for Mr.Bentley. Although this news is not great, the family stays optimistic and remains strong for their little boy.