“During our 20 week ultrasound, we found out that Silas’s stomach was not very big and they were having trouble seeing it. After a visit to the perinatologist, we were told that our baby’s heart was abnormal. From that appointment on, we had many tests and ultrasounds and more negative reports. We chose not to do an amniocentesis because it wouldn’t change the outcome. We did have a blood test done (Harmony Test) that screens for Trisomy 13, 18, 21 and that came back normal. At first we were told that his heart defect could be Tetralogy of Fallot but through more ultrasounds and visits with the pediatric cardiologist, we found out he had a large ASD. We also found out that he had bilateral club feet. They were still concerned about the size of his stomach and assumed he may have an esophageal atresia or a TE fistula. Silas’s one kidney was also small and his growth and my growth were always behind.
Despite the many physical challenges he continues to face due to his chromosome abnormality (trisomy 16q/monosomy 9p), he’s been relatively illness free and for that we are thankful! He has definitely made the transition from infant to toddler and continually reminds us of this everyday! He loves to tell us his “stories” and he makes darn sure we hear him because this kid is LOUD! Communication is definitely a new struggle we are facing as he gets older and something we need to work on. We are currently in the process of preparing him for preschool next fall as he desperately needs to be around other children learning from them and interacting with them!! It’s a little nerve wracking thinking about sending our non-verbal, non-mobile, gtube fed child to school (not to mention all the germs he’ll be exposed to), but we are so excited for him and this next season in his little life. He continues to love Elmo on the iPad, going on walks and for drives, reading books, and making everyone smile. He is looking forward to his 3rd birthday and welcoming his new baby brother in May! We are so thankful for your continued prayers for our “not so small.”