Isaac has a special party trick.... when he is in college and wants to really mess with people, he can just lift up his shirt and share that he has no belly button.
Yep, no belly button. Thanks to his omphalocele. An omphalocele happens when the intestines and sometimes other internal organs grow into the umbilical cord. They are sealed in a thin membrane. When he was born, they cut his umbilical cord with special thread then two days later they carefully tried to push in his intestines and close him up. He was only 5 pounds at birth though and pushing everything into his tiny body could have meant that it all burst open again so they didn't continue to close that up in his first surgery. Instead, we actually painted him omphalocele with a special cream and skin grew over that place. About two months later, skin had grown over his omphalocele and he had a flat, little belly.... special with no little button to collect dirt. (As a side note, when he was 15 months old, they surgically closed up that part of his abdomen).
I am sharing this special trick with you today because tomorrow, January 31 is Omphalocele Awareness Day. Omphaloceles can occur in isolation or with other birth defects. The "O" in OEIS complex stands for omphalocele. Omphaloceles can cause serious problems for babies and require many surgeries. We are so fortunate that for Isaac, his omphalocele was one of his easier defects to repair.
So today, I celebrate my little "O" warrior and all of his dear friends that are fellow warriors. They all have awesome party tricks to share with their buddies someday! I hope that they are proud of their special bellies.
Welcome to our journal about Isaac, our precious son who inspires us as he travels his journey through life with a contagious smile, a determined spirit and a rare birth defect of his abdomen and spine.
Thursday, January 30, 2014
Monday, January 27, 2014
A bit busy
We have been a bit busy lately and I am finally getting around to writing again. Not only did we celebrate Gabe's fifth birthday on December 19...
but we also welcomed our baby girl into the world on December 23, Hila Faith! (For those wondering about the pronunciation, it is Hi-la, with a long I sound.) She is named after my great grandmother whom I always admired.
Isaac joined Gabe in the ranks of big brother! Here is our first family photo of 5!
Isaac and Gabe have both done well with the changes. Isaac has always done things on his own timeline and there was no exception to accepting his baby sister. Unfortunately, he was sick with a virus and ear infection the first week of her life. He has not shown much jealousy towards her at all, just some indifference in the beginning couple of weeks of her life. He really liked to tell her everything that was going on (because he is quite the talker these days), but he kept his distance. Which was actually a blessing since he was sick!
But last week, he came over to Hila on my lap and gave her the tenderest touches and then said, "I want to hold Hila. (or as he says it, Hiya). Of course, I jumped at the chance and took as many photos as I could.
Gabriel has adored Hila from the beginning and it is so sweet to see him always want to love on her.
but we also welcomed our baby girl into the world on December 23, Hila Faith! (For those wondering about the pronunciation, it is Hi-la, with a long I sound.) She is named after my great grandmother whom I always admired.
Isaac joined Gabe in the ranks of big brother! Here is our first family photo of 5!
But last week, he came over to Hila on my lap and gave her the tenderest touches and then said, "I want to hold Hila. (or as he says it, Hiya). Of course, I jumped at the chance and took as many photos as I could.
Gabriel has adored Hila from the beginning and it is so sweet to see him always want to love on her.
We were lucky to arrive home on the night of Christmas Eve so that we could spend Christmas morning with our two boys and our families that were all so wonderful to travel to us for Christmas!
We truly couldn't have asked for a better Christmas gift! We hope that you all had a wonderful Christmas and we wish everyone blessings in the new year!
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