Wednesday, December 23, 2009
We spent about 5 hours at the hospital today, and needless to say I am exhausted, so I will try and give you the shortest version of what we found out today. I was prepared for some bad news, but the results weren't exactly what I was expecting. To our surprise, his heart looks like it is functioning normally, may have a little murmur, but nothing severe. His brain is separated into a left and right, but there is nothing connecting the two, so he will not have normal brain function. His kidney's are enlarged as well. It does appear that our son won't look exactly like a normal baby either. They were unable to see any eyes, just the eye sockets. He has a severe cleft palate, and it looked like another hole in his face as well. He has six fingers on each hand and six toes on each feet. It breaks my heart that I will not be able to look into my son's eyes, or be able to breastfeed him. Right now it looks as if we will induce whenever it becomes medically necessary. If we choose to induce before 24 weeks it will not be covered under insurance, but anytime after that it will. It is very likely that Eli will not make it to term, and when I go into labor it will be induced, this could be anytime between 24-37 weeks. It looks like no matter when he is born, and if he can make it through labor, Eli will probably only live from a few mintues to maybe a couple of hours.I met with a neonatal intensive care specialist who put together a team of doctors and caregivers to help me from making a birth plan to planning the funeral. It is going to be a tough tough road ahead of us, and even though Eli is very sick and does not look normal, he is perfect in my eyes. Thank you for all of your prayers and support, we need them now more than ever.
Posted by LC at 6:50 PM
After several ultrasounds and two CVS tests, it was confirmed that our son, Elijah, had Trisomy 13. He had several defects such as extra fingers, cleft palate, no lenses (eyes), enlarged kidneys, two vessel cord, the right side of the heart appeared to be larger than the left, and a few more things. Although Eli had many complications, he was both perfect and beautiful to us. He has opened up our hearts to what love truly means. We were not sure if he would make it to term or through labor. Around 35 weeks it became obvious that Elijah's growth was slowing down. I was induced at 37 weeks, and Elijah Alexander was born at 2:30 am, April 25, 2010, weighing 4 lbs. 15 oz. He was absolutely beautiful. He lived for 12 beautiful hours, and at passed away peacefully at 2:30 pm, April 25, 210.
- I have such an amazing family, I am so blessed. My husband Jon and I have a beautiful daughter named Dylan who is constantly making us smile. We also have a son, Elijah, who has changed our world and touched our hearts. Even though he is an angel now, we will always embrace and celebrate his life.