Aidan was first to get sick, on day 6 of life, his lungs wouldn't inflate after rounds of surfactant (which makes the inside lung pockets less sticky so they inflate with ease) causing pneumothorax as air was entering the space between the chest wall and the lung. As the air built up, the pressure inside the space increased and caused his lung to collapse. On May 21, an emergency chest tube was inserted to release air between the lung walls. Aidan had blood transfusions and was on a ventilator 3 times. Aidan spent 53 days total in the NICU and was released to go home on July 5, 2018. He is currently doing well, though he must constantly be monitored by respiratory, dietary, occupational therapists, and pediatric specialists on a regular basis to ensure he is thriving. He’s been eating well and gets to visit Kellan at the NICU frequently.
Now for the background on Kellan. May 26, 2018, day 12 of life, Kristen & Gabriel received a phone call at 4:00 am that began this horrific battle for life that Kellan was about to undergo. The phone call was to inform them that Kellan was having air bubbles in his intestines which could be a result of bacteria escaping his intestinal lining. At 9:00 am a second x-ray was performed and verified that Kellan had necrotizing enterocolitis (NEC) and his intestine perforated. (Necrotizing enterocolitis (NEC) is a devastating disease that affects mostly the intestine of premature infants. The wall of the intestine is invaded by bacteria, which cause local infection and inflammation that can ultimately destroy the wall of the bowel (intestine). NEC takes 1 in 4 premature babies diagnosed, most babies can be treated with antibiotics, while others require high risk surgery.) At 1:00 pm, Kellan’s surgery began. The surgeons removed 1/3 of small intestine. On June 1, 2018 Kellan was still not getting better; his platelets remained low and he spiked a fever. A second surgery was required to find out if the NEC reoccurred. Note: A NEC re-occurrence is EXTREMELY UNLIKELY so the neonatal doctor with 30 years’ experience hadn't seen a case. In Kellan’s case, it had returned. During the second surgery they removed an additional 9cm of small intestine, colon, and valve between. The had to create an ileostomy which he will require until he is a toddler. These medical issues have created feeding issues which prevented him from growing (he is in the .8% percentile to this day) - he can only eat a little bit a food at a time or his body can't absorb nutrients. On August 7, 2018, Kristen and Gabriel were informed that bacteria got into Kellan’s bloodstream, which spread to his heart, causing endocarditis. This caused him to require a highly specialized antibiotic for 6 weeks and added an additional 6 weeks in the NICU. To date, Kellan has spent 126 days in the NICU, 73 days away from his twin brother Aidan, except when Aidan is visiting the hospital. Kellan’s health is improving; however, will be going home with medical support which includes an at home nurse and G-tube to provide feedings overnight since he is unable to get full nutrient needs from his bottle feedings.
Both parent visit Swedish Hospital Daily and do the cares on their baby's visit which includes feedings, taking their temperatures, diaper changes, measure stool from ileostomy bag, and changing the ileostomy bag as needed. Kristen is fortunate that she has a great job that is allowing her time to be with her family during this family crisis. Gabriel quit his job to be a full time stay at home parent. (5.5 months earlier than anticipated). All specialists and physicians have advised neither of the boys can attend a daycare as they are both very medically fragile. Gabriel has focused on being medically trained on all the at home care needed for Kellan's someday (hopefully soon) arrival home.
As I’m sure it’s easy to identify, they’ve had unexpected expenses during this journey. They have expenses for:
· Gas to and from Hospital Daily
· Lost wages from Gabriel’s departure from work early
· Medical supplies not covered by insurance: medical grade pump, ileostomy and g tube accessories and other surprises
· Occasional Meals during visits
· Out of Pocket unanticipated therapy expenses needed to deal with emotional toll this has taken on the family
· Other Out of Pocket unanticipated expenses
While the entire family does have private medical insurance, Kellan also has Medicare & Medicaid, not all medical costs are covered. Kellan will have at least 4 daily medications that he will need daily for at least the next two years, and they are not covered by any of the insurance. Some of the supplies for his ileostomy are also not covered. This family and these boys are nothing short of a miracle and are fighters for sure. Just over one year ago, Kristen & Gabriel moved across the United States from Washington, PA to Seattle, WA to take advantage of the amazing job opportunity that was offered to Kristen. Never could they have known what the future would hold for them and their family while their friends, family, and support system is over 3,000 miles away. Kristen & Gabriel have been through more in these last 4 months than any parent should go through in a lifetime. This has been an emotion and financially draining nightmare that is still ongoing. I’m hoping to raise money to aid them in getting on their feet and having all the adequate supplies for Kellan to come home. Being so far away from family is more difficult than I could have ever imagined, but if I can help ease the financial burden they’re facing right now, it’s the least I can do. I hope you can find it in your hearts to donate to help this family finally begin to heal and be together. Please share everywhere. God Bless.
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