Today, January 31st, is Omphalocele awareness day. It is important to raise awareness and let new families faced with it know that there is hope! Many doctors (luckily ours were very supportive) suggest that termination is sometimes the best option, however, Aiden is living proof that these babies are tough and willing to to fight! It is also important that families who face this diagnosis know that it is nothing they did or did not do, it just happens. Aiden shows us everyday how much of a "normal" baby he is. He laughs, he smiles, he fusses, and he hits all his milestones. Not all "O" babies are the same, every case is different. Our Doctors are always hesitant to predict anything for him. But they did say he could be in the NICU for a year, he left before 4 weeks. They said he would be sent home with a feeding tube, he took his bottle 2 days before discharge after pulling his tube out. They said he would never crawl, well he showed them, he crawls and cruises everywhere he can!
WOW! I really cant believe how quick our little guy is growing up! He turned ONE on January 12th. What a year it has been! This time last year he was just a little baby, in the NICU, surrounded by nurses, doctors, and lots of beeping machines. Everyday he has gotten stronger and stronger. This past year has not been easy though. Last summer Aiden lost his Grandma Bobbie, my mom, to a long battle with COPD. I am glad she was able to see pictures of him before her time was done but I do wish she could have been able to hold and play with him. It was nice to see her smile when she saw his pictures. Aiden has been my inspiration and my focus through my grief. I will make sure that Aiden grows up hearing stories of Grandma Bobbie and that she will always be a part of his life, even if she cannot be physically present. Thankfully, his Grandma Sandra (Abuelita) and Grandpa Pat are very close have an amazing bond with him.
We still have are not sure when he will be eligible for surgical repair, his surgeon wants him to be big and strong. Right now his lungs are too small and the size of his "O" is too big for his abdomen to handle. We are doing light compression with an ace bandage to try to shrink the size of his "O". We are guesstimating around 2 or 3 years old he will be able to have his surgery. Of course, I am in no rush since that seems to be when complications arise.
We are so happy to have this little boy in our lives. He really is an inspiration to us. We hope that he can be an inspiration to family everywhere!
WOW! I really cant believe how quick our little guy is growing up! He turned ONE on January 12th. What a year it has been! This time last year he was just a little baby, in the NICU, surrounded by nurses, doctors, and lots of beeping machines. Everyday he has gotten stronger and stronger. This past year has not been easy though. Last summer Aiden lost his Grandma Bobbie, my mom, to a long battle with COPD. I am glad she was able to see pictures of him before her time was done but I do wish she could have been able to hold and play with him. It was nice to see her smile when she saw his pictures. Aiden has been my inspiration and my focus through my grief. I will make sure that Aiden grows up hearing stories of Grandma Bobbie and that she will always be a part of his life, even if she cannot be physically present. Thankfully, his Grandma Sandra (Abuelita) and Grandpa Pat are very close have an amazing bond with him.
We still have are not sure when he will be eligible for surgical repair, his surgeon wants him to be big and strong. Right now his lungs are too small and the size of his "O" is too big for his abdomen to handle. We are doing light compression with an ace bandage to try to shrink the size of his "O". We are guesstimating around 2 or 3 years old he will be able to have his surgery. Of course, I am in no rush since that seems to be when complications arise.
We are so happy to have this little boy in our lives. He really is an inspiration to us. We hope that he can be an inspiration to family everywhere!