My name is Lisa. My daughter is 16 yrs old, and her name is Lola. This is the story of her first her 1st child. I noticed at about 33 wks. that my daughter wasn't getting very big. I talked to the drs. about this they did ultrasounds and said the baby was very small. We were then sent to a specialist a week later who said there were problems. We were then sent to Seattle University Hospital, where after an amnio, they said it was trisomy 18. She was also told that they could probably pull some strings to get thru some loop holes if she wanted to terminate her pregnancy. We said no to that right away. Back here in our home town we had various meetings with the Drs. They seemed more optimistic than in Seattle. At least they were willing to try. They explained to us the risks and the complications she would have, but we always felt, that she was stronger than everyone thought, and she was. She was born by c-section on 09/10/2010 about 12:36 pm, there were whole teams of the best Drs in our area there at her birth. I was there and a chaplain was there who baptized little Eva minutes after her birth. Nobody knew what would happen and we all hoped for the best but were preparing for the worst. Then she was born, and after a few seconds she cried and her heart was beating. She was baptized and then weighed in at 3lbs and 3ozs. I was allowed to carry her into the NICU. The doctor in charge is also her pediatrician, and a very good one at that. He listened to all our wants and concerns, and before her birth we had made a plan on how much intervention there was to be done. We were for all intervention, short of breaking her little ribs to do chest compressions. If it got that bad, she probably wasn't going to survive, so why cause her the harm. She is almost 4 lbs now and has been at home for almost a week. I do her feeding thru her tube, she is on an apnea and brady monitor, with very little apnea. She does have clubbed feet and the typical trisomy 18 hands. Her right side of her face has palsy and her eye stays open most of the time. I have had 5 very preemie babies who are grown and doing well now, so I am pretty used to taking care of small babies. All though mine didn't have the problems that Eva does, I am comfortable with taking care of her. Her mom is here to help but is young and scared and not sure of how to do a lot of stuff, but that's why I'm here for her. Eva has a large hole in her heart, and does suck
a little on a bottle, we try to nipple her a little at each feed, even if just a few cc's. But she is a precious little angel and we are so glad she's here with us. She may have her disabilities but as long as God lets her be with us we will take care of her. She loves to take a bath and she likes to float in the water. She doesn't make a peep, and enjoys it very much. At first we were told she has a full trisomy 18, but after birth other tests were done and now we know she is trisomy 18 mosaic. If anyone else reads this I hope they may realize that there is always hope, and you should never lose it. Nobody thought Eva would live past birth and in fact every week after we found out about the condition I had to take my daughter to the doctors just to make sure there was still a heartbeat. Then nobody really thought she would live much after the birth if she made it thru it, and she did. She is not the same as a baby without this condition, but she is her own self and very special to us. She is very content and comfortable. She rarely cries except if hungry or has gas, or wants to be held. She loves to be held. They say these
kids don't know a lot, but she knows enough to figure out how to take out her feeding tube from her nose that was bothering her, and enough to cry so she can be held. Good luck to anyone else who is going thru this and God bless you and your child, and may their time here with you be wonderful for all of you.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.