Trinity Rose was born on April 18, 2008.  She was 37weeks. She weighed 6.2 and was 17 1/4 long. Five hours after she was born they told us that she was being taken by life flight, because she had a partially blocked sinus airway, and her chest would nearly colapse when she tried to breath. That is a sight that I will never forget.  Thank God for a very easy delivery because when she flew out we started the 3 hour drive to Primary Childrens in Salt Lake City Utah.  Twenty minutes after we arrive they told us that they suspected that she has Downs. Boy that was a whammy.  Which she does not have.  At two weeks they were going to let us take her home with an OG and O2 so we could wait for her sinus to grow out of it.  We where so excited.  Then my "bubble got burst".  We got a phone call on the way down. They had done a CAT on her head.  Her sinuses where almost all the way closed.  They wanted permission to do surgery that night.  When we arrived at the hospital they filled us in on the rest.  After the surgery the wanted to do a MRI.  They told us that she has HPE they just don't know to what extent.  At the same time the gentic tests came back and confirmed what they suspected.  Trinity has lobar HPE (still waiting for secand opinion)The say she will only have one bigger front tooth. (I know there are big words for all this stuff, but I like simple english) She does have a developed thyroid but it has been affected; therefore, she has to take Synthroid.  She has diabetes insepidus (I bet that is not spelled right)which had been a roller coster ride to say the least. She takes daily injections of Desmopresson. She is now 2 1/2 months she weights 7.12 and is 21 long.  Jut to look at her you would not think that there is anything wrong.  We have 3 other children 2 of which are still under 3, she acts just like they did when they were that age.  I don't think that she will have a lot of motor problems.  She already rolls from back to side and stomach to side.  Follows things and sounds with her eyes, and she has started to smile alot and coo. She is so beautiful.  I have read the other letters and they bring joy to me knowing that I am not alone. Trinity may not have as many complications from HPE as some do but she still has HPE and that is very scary.  I just thought if I told my story someone out there would realize that it is not always as bad as the DR. make you feel it is.  Trinity was able to come home at 33 days old.  It has been a very hard stuggle.  Sometimes I don't think I can go on. But I look at her and know I have to for all of my children.