Life since learning about Trisomy 18

Since I learned that my child has a greater than 90% chance of having Trisomy 18 my life has been unimaginably different. I found that from day one to today my attitude, as well as my understanding continues to change. 

After the first appointment, when I had almost no understanding of what was really going on, from my perspective having a baby with Down's Syndrome would have been a blessing. Now I am praying and hoping that I will at least have the opportunity to hold my child. The doctor's are not optimistic at all and I am a realist, but I have also seen the miraculous healing power of God firsthand. From what I understand they do not expect my baby to survive very long after the birth, if he/she makes it that far at all. If this baby lives it will be purely by the grace and power of God. 

While I believe this news is hard to handle for anyone that is faced with it. I believe in most cases mothers are the most severely impacted by an indication that their child has Trisomy 18. It impacts so many, especially the fathers, but most mothers have an instant connection with their child as soon as they know they've conceived. As I sit through each ultrasound I know that this child is as much my child as Isabella and David are. My love for this child is just as strong as it is for my others, and continues to grow with every kick, every ultrasound, and every passing day. 

What amazes me most about this experience is the many questions I have been faced with and will continue to face. First was life or death, termination or continuation of my child's life. That was the easy one for me. I have an irreplaceable sense of peace knowing that this is in God's hands and knowing that His will is best. I know whatever the outcome I will have peace. 

Amniocentesis was the next dilemma I was faced with. It has a 0.5% risk of miscarriage but without it doctors would have a more difficult time knowing the best way to proceed once the baby is born. Should they do comfort care, or try to operate and repair the baby's heart. My struggle with this decision is the risk, 0.5% may not seem too major but I always seem to be the exception and not the rule with medical procedures. Kind of what can go wrong will go wrong. A prime example would be how the first attempt to do the amnio. failed because my uterus started contracting during the procedure and the doctor was unable to get the needle to breakthrough the uterine wall. Now I am left contemplating whether or not I should allow them a second attempt.

There are other questions that are more ominous, questions which I usually prefer not to think about. I know that the Lord can do a miracle and completely save and heal this baby, but I do not know whether or not that is what He will do. So I am faced with wondering if I should choose to try and treat aggressively or to give the baby comfort care, and worst of all wondering if in a few months I will be responsible for handling funeral arrangements for my child. The thought of this is unbearable, and immediately weighs me down when it enters my mind. I don't want to lose my baby, I really, really don't. 

I cry once everyday, but the hardest days are those when the baby doesn't move, or when I have a doctor's appointment, or when I have contractions. Never knowing whether your child is dead or alive is so incredibly hard, you cannot even put it into words. My breath catches before each ultrasound, and I stare at the screen without blinking searching for the heartbeat or some minor movement. Once I know the baby is okay I am left fighting back, what seems like, gallons of tears and intense nausea. The only way I think people would be able to begin to understand the emotions that I and many others face in this situation is to be a parent themselves. As a parent just imagine if you knew something was horribly wrong with your child, and the next phone call you received would be a doctor telling you if your child had lived or died. The intensity of that emotion is what I face each day, and is at it's strongest on the really hard days. 

Although I cry everyday, I also have joy. The Lord is so gracious, he gives me continued peace, and a reason to smile each day. I cannot wait to see whose lives he touches with my baby's life, but I know that some and possibly many will be deeply impacted by my sweet little baby. I have another ultrasound in 2 weeks and I will post an update then! Please continue to pray and believe in His faithfulness and sovereignty!