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On May 6, 2022 we welcomed our baby girl Emersyn (four weeks early). After a relatively uncomplicated pregnancy, we were extremely surprised at how quickly things took a turn after delivery. Emersyn was born with a very distended belly, and immediately began vomiting dark green fluid after birth. The medical staff indicated that she likely had just aspirated amniotic fluid and anticipated the vomiting would soon subside. Since she was born slightly before her due date, the staff needed to monitor her sugars for the first 48 hours. Within a few hours after birth, it became apparent that something wasn’t quite right. Emersyn had little desire to eat and was extremely lethargic. She began to struggle with keeping her sugars up and despite SLP’s best efforts to help her eat, she could not keep anything down. She also had not passed any meconium, so on the morning of May 7th, a NICU doctor was called to assess.

Emersyn was immediately taken to the NICU and the team began running tests to try and determine what was causing the vomiting. An NG tube was placed with suction so that the fluid could be drained from her stomach and some of the pressure on her belly could be relieved. The team drew blood work, took x-rays and started an IV. Dr. Strueby was on that day and remembered our family from our previous NICU experience with our older daughter Charlee (who was admitted the exact same day four years earlier). Charlee was eventually diagnosed with Food Protien Induced Entercolitis Syndome (FPIES) and the doctors expressed that Emersyn could possibly have a similar gastrointestinal disorder. My heart sank. Although I was familiar with FPIES and the NICU experience, I was not prepared to re-live it with Em.

As the tests started to come back, the NICU team indicated that Emersyn would require some IV nutrition (TPN). After multiple attempts at PICC placement, the team was in disbelief with how extremely difficult her veins were. They opted for an Umbilical Line (UVL) in the mean time until an alternate central line could be placed.

On May 8, we met Dr. Alharbi the general pediatric surgeon for the first time. He advised us that there were likely a few conditions that could possibly be causing the issue, however all required immediate surgery. We were told that the extent of the issue and corrective measures would not be known until he was in the OR and could physically see what the issue was. He promised us that he would make the safest choice for Em…a promise that he would deliver on (more than once). As we waited for surgery, Emersyn’s oxygen saturation began to drop. The pressure from all of the fluid and air in her belly was making it difficult for her to breath, so she needed to be put onto high flow oxygen for support. The next few days were a blur as we waited for Emersyn’s surgery & diagnosis.

On May 11, Emersyn had her first surgery. My husband and I sat in the family waiting area and anxiously awaited any updates. As the hours passed, we watched other families come and go but still Emersyn’s patient code status remained unchanged. After more than 6 hours in the operating room we received a call from Emersyn’s nurse around 7:30 pm that surgery was completed and she was being transferred back up to the NICU. Finally we felt like we could breathe again.

Dr. Alharbi met with us after surgery and sat with us to explain what they had found. Emersyn had a birth defect called Intestinal Atresia (hers was Type IIIA). Which meant that at some point in utero, it was likely that blood flow was reduced or cut off to her small intestine; when it healed it left a gap where they were no longer connected. Since babies swallow amniotic fluid in utero the portion of her bowel that was above the atresia was extremely distended, while the portion below had never had anything in it and was therefore extremely narrow. Dr. Alharbi performed an anastomosis to reconnect the two pieces of her bowel. He prepared us that due to the large size discrepancy in the proximal & distal bowels that were reconnected, it would be a long road to recovery. He also forewarned us, that’s since Emersyn required an open abdominal surgery (laparotomy) there was a chance she may develop issues with scar tissue in the future. But overall, the surgery and correction went as well as it possibly could have. The surgical team was able to get a PICC line and Emersyn was on the road to recovery.

Over the next two months, Emersyn battled severe bowel dismotility, infections and anemia. The NICU & Surgical Teams worked tirelessly to try and get her eating again and gaining weight. After starting motility drugs, she was able to work her way up to full feeds, but continued to have spells of vomiting and lethargy. Eventually the episodes got farther and father apart and Em was able to stop the TPN and start gaining some weight.

On July 2, (weighing just over 8lbs) she was discharged from the NICU. Throughout the summer we continued to face many challenges including a lack of weight gain, iron deficiency anemia & continued boughts of feeding intolerance causing dehydration. Emersyn was readmitted to hospital three times throughout July and August.

On August 18th, she was admitted for suspected ileus. After no improvement over the weekend, an upper GI series showed intestinal obstructions. On August 24th, Emersyn underwent her second surgery with Dr. Alharbi (Stricturoplasty) for multiple adhesions and she also received a new PICC line at that time. Unfortunately, the post operative ileus continued to linger on and impede her ability to tolerate any oral feeds. She began having episodes of severe acute pain requiring morphine daily and shortly after that, she developed a severe bacterial infection in her bowels.

Less than a month after her second surgery, on September 21, Emersyn had her third surgery with Dr. Alharbi & Dr. Hall. A bowel resection and tapering enteroplasty was performed to remove a piece of her bowel and reduce the calliper of her remaining dilated bowel. The hope was that this would improve its motility & absorption, which it did! The surgery was a huge success. Post op, Emersyn overcame ileus much faster. She had some significant hair loss, bleeding from NG irritation and opioid withdrawals, but somehow managed to begin and exceed all feeding expectations way quicker than ever before.

On October 5th, two weeks post op and after 48 days on PEDs, Emersyn was discharged home (weighing just over 11lbs).

Em continued to have intermittent fevers & GI upset as the month continued. She was readmitted at the end of October to rule out an abdominal abscess & infection and spent her first Halloween in hospital. Emersyn has slowly begun to gain weight more consistently since her last admission, but still has a long road ahead of her. We are so incredibly thankful to the NICU, Surgical, Emergency & Pediatrics teams at JPCH and to all the behind the scenes staff who also played a role in her journey. After spending four of her first seven months in hospital, we are looking forward to spending more time at home. Although it is likely not the end of her journey, we are so incredibly blessed to have such an amazing hospital with the best staff ready to take care of her whenever we need them again.

With Sincerest Thanks,

The Schumachers

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