Madilyns Journey

Madilyn was born at 37 weeks on August 27th, 2020. She was an induced delivery due to severe polyhydramnios, gestational diabetes, and advanced maternal age. Prior to delivery it was known Madilyn would be born with a congenital heart defect called a AV canal defect. After delivery they noted she also had developed another congenital heart defect called Tetoroloy of Fallot. It was also noted she had larynogomalacia and tracheomalcia, which most infants can outgrow. She remained in the NICU being fed by a nasogastric tube through her nose and being closely monitored. Alicia and Patrick drove back and forth everyday from Wahpeton to Fargo to be with Madilyn during the day so they could be at home with Madilyns brothers Andrew and Devin at night. Alicia and Patrick then made the decision to have a GTube placed into her abdomen and also have her vascular ring repaired (a part of her two main heart defects.) Madilyn was then flown down to the U of M in Minneapolis on September 13th, 2020 and had the surgery completed on September 17th, 2020. While down at the U of M, the specialists noticed a couple things like her deformed ears and colobloma of the eye and along with her heart defects that they wanted genetics to look at her. Genetic testing was completed and Madilyn tested positive for Charge Syndrome. Alicia and Patrick stayed with Madilyn the whole time, while family helped out with her brothers at home. On September 24th, 2020 Madilyn was flown back to Fargo to finish recovering. The day before Madilyn was supposed to be discharged home, she developed a gastrointestinal infection called NEC. She had to stop all feedings and be placed on antibiotics for a week and then restart her feedings for another week prior to finally being discharged home on October 11th, 2020.
Things were going well at home for approximately 2 weeks. She was thriving and growing and getting lots of love.It was after about 2 weeks when it became concerning to Alicia and Patrick that Madilyns behavior was changing. She was having difficulties breathing, apnea, and more irritable. It was at Madilyns cardiology follow up on October 23rd, 2020 that it was suggested that she have a overnight observation stay at the hospital due to her parents concern. The team at the hospital watched Madilyn for about 4 days. Collecting data and observing her. Their thought was that her larynogomalacia and tracheomalcia were getting worse. It was suggested that Madilyn be brought to Childrens Hospital in Minneapolis. Madilyn was brought to Childrens Hospital in Minneapolis on October 28th, 2020. They performed a Bronchoscopy and completed a supraglotticplasty. But the main concern is that Madilyn has a tongue based airway obstruction. So while she heals from the supraglotticplasty and they are completing more testing to come up with a plan to help her tongue based airway obstruction with either a lip-tongue adhesion, a mandibular distraction, or a trach. Alicia is with Madilyn while Patrick is staying at home with Madilyns brothers and working to keep some sort of income coming in. After Madilyn completes this obstical she will then have to have open heart surgery at about 6 months of age to repair her Tetoroloy of Fallot and AV canal defect. She will have lots of interventions even afterwards with feedings, OT, PT, ST, genetics, and her eyes.