The story of our journey through pregnancy, birth and life of my son Emery who was diagnosed with Anecenephaly. Anecenephaly is a neural tube defect that effects 1 in 10,000 pregnancies and is fatal to all babies who have it. Most die before or during birth, some can live for a few hours to few days, and very very few live for longer periods of time. I do not know where this journey will bring us but I want to give my son the best possible life he can have and enjoy all the time we have.
Saturday, November 3, 2012
Finding the positives
A few days ago it was Halloween. The first holiday since I have found out my son wasn't going to ever spend any of them with us. Before I knew of his condition every thing we did I would think next year we will be a family of 4, and we get to bring BOTH kids. I was so excited by the idea of getting to show him the world and see him experience everything for the first time. I was having a hard time making it through the day thinking of how badly I wanted things to be different. I was devastated by the fact this was going to be his only Halloween. But I dressed up and took my daughter out, and really turned the day around. I made a fun day out of it. I dressed up as a redneck, I had a long wig and put in beer can curlers, then I wore a ripped up shirt, and rocked my "beer" belly :) It was pretty hilarious, everyone thought I should have entered the costume contest. As hard as it is sometimes to focus on positives I am so glad I turned the day around and made it a positive day to remember.
Today I am 26 weeks pregnant. What that means is in only 6 short days I will be in my third and final trimester of this pregnancy. It is something that is normally a really happy time, like the countdown to baby is on, less then a 100 days and only a matter of weeks and you will be holding your baby in your arms. I normally would be SO happy but this time I am really scared. I am scared for the unknown, scared for how fast the time is flying by, scared to let go of my son. Luckily at the doctors yesterday I was told his heart sounds good, and I am not measuring too big (meaning my fluid isn't too high) and I am healthy. I haven't gained any weight (though you may be fooled from my belly size) and my blood pressure is good, and my glucose test was normal. So for now my little boy is comfy. Since anything can happen with this I feel good getting everything checked. Now my bimonthly appointments start, they will be checking his heartbeat and my fluid levels twice a month up until January. His heart could suddenly stop beating or if he isn't drinking fluid my belly could swell up and I will have to get induced. Also the doctor said she will deliver me on my due date if I haven't had him before. Originally I was told I had to wait until a week after, which I didn't want for several reasons. My due date is Feb 9th and for some reason I have always loved that date. I don't want him to come sooner since I want as much time as I can have. Also the 8th is my mother in laws birthday and I wanted to have him get his own day, since we have no idea how things are going to go. And then if they made me wait a week it would be on the 16th. 2 days after Valentines day and 2 days before my brothers birthday. I don't his death surrounding my mother in laws or my brothers birthday. I guess he will have time to pick his time and if not it will be the 9th :) whatever it is we will smile about and take it as it comes.
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