Ashton's Quest

Story

No one prepares you for this part of parenthood. No one warns you of the ferocious worry that will overcome your entire being when your child is sick. Brian and I found out when I was 17 weeks pregnant with our sweet little boy, that he has Down Syndrome and a Ventricular Septal Defect (a hole in his lower two chambers of his heart). Ashton came into this world in February and since then he has been in the NICU with respiratory failure related to both of these diagnoses. An echocardiogram was done after his birth and it also revealed he not only had the hole in his heart between the lower two chambers, but also, he had a hole between the upper two chambers called an Atrial Septal Defect. The doctors also discovered he was born with another congenital malformation called Imperforate Anus, where a normal anal opening isn't present at birth. At two days after birth, Ashton went to surgery to have a colostomy placed. He will need to have a surgery later on this summer to reconstruct his colon and once that heals, another surgery to remove the colostomy. We have not been able to bring Ashton home since his birth in February because of the oxygen support he required for his respiratory failure. On April 22nd, I received a phone call at work from the NICU team that Ashton's cardiologist had a conference with the heart surgery team. Since Ashton was starting to require more and more oxygen support over the last few weeks, they decided that Ashton's heart was starting to fail him, and he finally needed his holes in his heart repaired. The next day, April 23rd, at only 2.5 months old, Ashton underwent his open-heart surgery. Ashton is recovering well now from his open-heart surgery with only a couple setbacks initially but is still requiring some oxygen support yet. As we have known throughout Ashton's life, the holes in his heart were not the only issue causing him respiratory distress. He has a weak airway due to having low muscle tone from having Down Syndrome. Further workup is being done now to evaluate Ashton's respiratory health. Ashton has been so strong, like a bear, through all of this since Day 1. We are still unsure when we will be able to bring our sweet little bear home. We knew that Ashton's journey was going to be challenging, not only for him, but also for us as a family emotionally and financially. We had prepared ahead of his birth by saving funds for not only my own maternity leave, but also for the time off when Ashton needed his heart surgery. Unfortunately, we had not expected that he wouldn't have come home with us after birth and remains in the NICU yet after 2.5 months. We are close to exhausting our savings and won't have enough to take time off of work for when Ashton does come home and for his future colon reconstruction surgeries. This is not easy for Brian and me, but we are asking, please, for any monetary donation to help us in this time of need. It would be greatly appreciated. We know Ashton's quest to get better and come home will not only be hard on him, but also for us as a family financially. He has the strength of a bear to get better. Brian and I just want to be there along the way to give him those "bear" hugs that he needs. If you don't feel comfortable donating through the GoFundMe platform, you can also send donations to my Venmo account (@juliestatema) or private message Brian or I to donate personally. We will post updates as Ashton continues on his quest.