Friday, February 12, 2010

How It All Began...

Forgive me...I am new to all of this, and my mind isn't exactly working in the way that it usually is...I am here to tell you our story that is unfortunately just beginning...I have been happily married to my best friend for almost seven years. We started out our marriage wanting to start a family quickly, but God obviously had other plans for us...we tried for about 2 1/2 years to get pregnant with the help of fertility treatments, and then I got pregnant with my first child...We were so excited that our dreams were finally coming true until I lost our first child somewhere between 5-6 weeks of my pregnancy. We decided to try again, and we were blessed with a very healthy pregnancy that resulted in our beautiful daughter Carley who is now almost 3 1/2. When Carley was about 9 months I found out that I was expecting Baby #2...we were very shocked because I was still nursing and because it was so easy! We had another healthy pregnancy that gave us our son Parker who is still to this day one of the best surprises we have ever received! We have been very busy raising our two active kids, and we decided last summer to build a new home in the country. We ended up selling our house very quickly which was a big surprise to us, and we had to move in with my parents...shortly after we moved in we found out we were expecting Baby #3. We were very excited and overwhelmed by the thought of having another one at this time even though we have always wanted three. My pregnancy has been going along really well except for the fact that everyone kept telling me how small I was...which is unusual for me since I always gain a lot of weight! We went in for a routine ultrasound at around 27 weeks just to make sure everything was ok. This is where my nightmare all began..

I had to go in the room all by myself to get the baby's measurements which is standard at our hospital..they then bring the husband in to see the baby once they are finished with all of the measurements. The ultrasound tech. was taking a really long time, and then she said she needed a few minutes before she brought my husband back...15+ minutes later I am completely freaked out because she has not returned...She finally returns and brings the radiologist in. I watched in horror as they explained they needed to look at the heart a little bit better..in the meantime they tell me I have extra fluid, the baby has a cyst on his/her brain, the umbilical cord has one artery instead of two, and the baby is measuring really small...I am all by myself and horrified that something could be wrong..they of course can't give me any more answers because it is beyond their expertise. We end up being scheduled for a Level 2 ultrasound in Pittsburgh with a Reproductive Geneticist. We have been praying like crazy that all would be ok for this poor baby, and that they were not able to see things very clearly because the baby was being so active. We luckily got in for the ultrasound rather quickly..about a little over a week later. We met with a Genetic Counselor first who took all of our information and family history..we both have clean bills of health in that department! We discussed what they would be looking for, and she answered all of our questions before we went in for the ultrasound. We went in and got to see the baby in great detail..in fact we even got to experience some of the ultrasound in 3d which was a new thing for us! The baby was beautiful and perfect in every way...The doctor came in and looked at everything with us, and she explained in great detail what she was seeing...The great news was that the cyst was gone, and my fluid level was back to normal...The bad news was that the heart looked like it was not formed correctly, the baby might possibly have a rocker foot, and the baby definitely was missing a part of the brain that sends signals back and forth from left to right. They felt that we should go see a Pediatric Cardiologist to see the heart more clearly, but they also felt like we would benefit from Amnio...I of course could not even think about doing that because it would not change the rest of my pregnancy..I also didn't want to take the chance of losing the baby at this point because he/she was so small. We were then introduced to a diagnosis that you never want to hear as a parent..Trisomy 18. We had no idea that this might even be a possibility for our baby since it is so rare, and we were told the only way we would know for sure is to do the amnio or wait for the baby to be born. We opted to go see the Cardiologist first to see what they said about the baby's heart. We left the office in shock and completely horrified that our child might not live due to the diagnosis they suspected. We spent that day and most of the next just walking around in a fog until we saw the cardiologist on Wednesday..they needed to see me right away I guess. I was assuming that meant that the baby's heart was not good. We went to Pittsburgh again (this is about an 1 1/2 drive for us) on Wednesday for the ultrasound of the baby's heart. The Cardiologist was not exactly the most personable person in the world. I would think that since they work with children they would be! She didn't say much as she looked at the heart, and then she got a bunch of diagrams to show us what was wrong. We found out that there are four main problems with the baby's heart that would require 3 major heart surgeries. The first would have to occur in the first week of life, and there would only be about a 50% survival rate...The baby had to weigh at least 5 1/2 pounds, be full-term, and the one valve that was small already would have to be bigger because the other valve was not working at all. If any of those options didn't pan out the baby would have to have a heart transplant..not really likely for a newborn..She recommended getting the amnio because she also suspected Trisomy 18..the baby's ventricles were switched too so that made things a bit more difficult. We left that office knowing we needed to do the amnio because we were told our own doctor could deliver the baby at our hospital if in fact the baby had Trisomy 18 because there is nothing that can be done to save the baby. My doctor is such a wonderful man, and I couldn't think of anyone better to deliver this baby than him since he himself lost a child to childhood leukemia..I thought he might be able to help me get through this.

I went away for the weekend with my mom and daughter to go visit my sister and her girls in Chicago to get my mind off of what was to come. We ended up getting a huge snowstorm at home so we couldn't get home on Sunday because they canceled all of the flights into Pittsburgh (yes I was back in Pittsburgh again). We decided to drive the 9 hours home so I could make my Monday amnio appointment in Pittsburgh. Mike (my husband) and I drove back to Pittsburgh for our appointment at 1:00 to do the amnio. I wasn't really scared of the procedure itself..I was more scared of the outcome I guess. They explained everything that they would do, and they also made it very clear that I was doing the best thing for myself and for the baby by doing this test. We had decided to find out the sex of the baby with this pregnancy since we didn't know how long we would have this child with us. This was new to us since we never have found out before. The ultrasound tech went straight to that area and took a picture for us and told us it was a girl. I was not at all surprised. I knew it was going to be a girl. Her name is Aubree Hope...she has my initials. The doctor actually ran an extra test for me that would give us results in about two days which is much shorter then the usual 2 weeks. I was relieved that we might know for sure in a shorter time frame. We left that appointment with several of our questions answered, and we tried to keep our mind off of things. I got the call around 11:30 on Wednesday morning that my daughter did in fact have Trisomy 18. I knew in my heart this was coming, but I was still holding out hope that she might just have a bad heart. I cried for most of the day, and I tried to make sense of this mess...she was going to die, and now I just had to wait for when that might be. She is still so very much alive right now, and she is as active as ever. She is such a fighter, and I hope she fights until I get to meet her alive.

This is where I am now..I go between being so thankful for her every movement and for the time that I have already shared with her to breaking down whenever I remember she is probably not going to come home to her new room. She is such a blessing to us, and she has taught us so much about life already. We learn that we should never take any day for granted because you never know when it might be your last. Aubree has really made that real to me. She has also taught me to love my children even more...never take anyone you love for granted. I am also looking at this in this way...she must be really special if God is ready for her to come back to him already. I am a firm believer that there is a reason for this even if it doesn't make much sense now to us. I am not angry about it either. I am just sad that my time with her is going to be short. I am writing to celebrate her life and to let others know about this rare chromosomal abnormality. I have learned so much about it already, and I know I still have so much more to learn. I go to bed each night and I wonder if tomorrow will be my last day with her..she can die at any time, and most of these babies die before even reaching their due dates unfortunately. Her official due date is April 24th. Everyone keeps asking me how I am getting through this..the only way to put it is my faith. God has been holding me up, and he has been reminding me every day of what a gift life is. I hope that I get to hold my daughter alive, but I know that God is in control so his will be done. I love my little girl so much already, and I just pray that she does not have to experience any pain. And now our journey begins....

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