Positive home pregnancy test! The only thing is, I just wasn't as sick as I was with my first two children. I was very nervous about this, and just didn't feel like everything was right, so my doctor ordered an ultrasound. On January 23, ultrasound confirmed pregnancy, and we even saw a tiny heart beating! The test determined our due date to be September 12.
MARCH 2006
At my routine OB/GYN visit this month, it was time for the Alfa-Feta-Protein Screening test to be done. With my other two kids, I had this, and never really knew it was optional, I thought it was just done. This time around, the doctor and nurses kept saying over and over again, "Now this is just optional, are you sure you want this done?" I didn't have any reason to think that I didn't want to have the test done, so I went ahead and had it.
APRIL 2006
Our son Dylan turned 2 years old on April 3rd. On April 4th, my doctor called with the results of the AFP screen. He said that I had a 1 in 19 chance of having Trisomy 18, and was referring us to a genetics counselor and recommended an amniocentesis. I didn't even know what to say or think. I went online and tried to find out SOMETHING about this disease. What I found was not encouraging. I cried A LOT. My husband came home from work for a while, but we got scheduled for the amniocentesis for the next day, so he went back to work. I spent the rest of my free-time that day on the computer researching. The next morning our pastors came over and annointed us with oil, and prayed over us. We went to the hospital and spoke with the genetics counselor, and had a level II ultrasound done. This is just a more detailed ultrasound, where they look at more organs, and take more measurements. The perinatologist was not able to see the heart well enough to rule out abnormalities, but he wasn't able to find any other markers to say he really thought our child had Trisomy 18. He was able to tell us that our baby was a boy, and that the only way to know for sure was the amnio. He then performed the amnio, and we went home to rest. The next two weeks while waiting for the results was a time of drawing close to God, and making as many decisions as we could. This helped us so much, because whenever the information got too over-whelming, we could always say, "well this is only a maybe, he may not even have this disease!" That helped us so much! Some of the decisions we had to make, were, if we wanted comfort care, or if we wanted to try a more aggressive approach. Trisomy 18 is a condition that is linked with high risks of stillbirths and infant deaths. Babies born with T18 have a 50% chance of living a week, and about a 10% chance of making it to their first birthday. There are a lot of defects that are associated with T18, but not every child has every defect, and there is a wide spectrum of severity with each defect. At this point we didn't know what defects, if any that our son had, and so we just tried to decide things based on the general information we had: Our son, if diagnosed, would have little time to spend with us, so how would we spend the time given. We decided on comfort care, and just wanted to love him, and hold him, and make the most of what time God had planned for him. We were told that if we wanted to terminate, it had to be done by 24 weeks. We told that doctor, that termination was not an option for us. God doesn't give anyone more than they could handle. In the Peace in the storm section is all of the verses that God gave us to comfort us in this time. We were also given another choice. To trust God and draw near to Him, or to turn our backs on God and get mad at Him for putting us through this. We know that God allows people to go through these trials because He knows it will bring glory to Him. We knew that we couldn't do it alone, but with God, we can do anything. We decided to trust God, and know that He would see us through. Music was very important to us in this journey, as well. On our way home from the amniocentesis, we heard the song, "Praise you in this Storm" by Casting Crowns, for the first time. We knew then that we wanted to praise God in our storm, and that it didn't matter what He gave us, we would never turn our backs on Him. On April 14th, the genetics counselor called with the results of the amnio. Our son has Full Trisomy 18. This means that it is a "genetic fluke" like a bolt of lightning. My husband and I had nothing to do with this. But it also means that because all of his cells are affected, he has less a chance of survival. There are quite a few children living with T18, but most of them have partial, or mosaic, meaning that not all the cells are affected. On April 24th, we had another level II ultrasound. This time, Choroid Plexus Cysts were found. Choroid Plexus Cysts are fluid filled spaces found in the choroid plexus, which is an area in the brain that makes a fluid that protects the brain and spinal cord. Some babies develop these, and they go away before they are born. CPCs are a marker for trisomy 18, and if they are found before an amnio, doctors may recommend further tests. We had the amnio first, so when the cysts were found, it wasn't a surprise. On April 28th, we saw a pediatric cardiologist who performed an echocardiogram, or a detailed ultrasound of the heart. At this appointment we found out that our son has a large VSD, ventricular septal defect. This causes oxygenated blood to mix with unoxygenated blood, and makes the heart work harder, and in return, makes it harder to breathe. She also found that he had a smaller ASD, atrial septal defect. This didn't concern her as much as the VSD, and thought it could possibly close on its own.
THE NAME GAME
Now we needed a name. We knew that we wanted his name to mean something great, and praising God. After hours of searching online, and baby name books, we finally decided on Elijah David. Elijah means, "The Lord is my God" but all through the Bible, whenever Elijah is mentioned, it is because of his tremendous faith. God told him to sit by a river during a famine, and he would feed him. Elijah didn't second guess God. He sat there and sure enough, twice a day, God sent birds to him with food. Both of our older children have family ties in their names, so we wanted to continue this tradition, and David is my father's middle name, and my grandfather's first name.
TELLING THE SIBLINGS
How in the world were we going to tell our kids that the baby in mommy's tummy is sick?? My mom helped me realize that we can't just tell them that baby Elijah is sick and will go to heaven, because the next time either of them get sick, they may be afraid they will have to leave us and go to heaven. We finally decided to just be completly honest. We told them that Elijah has too many chromosomes and that makes him sick. He may come and meet us for a little while, but he is going to go and live in heaven with Jesus. They may not know what a chromosome is right now, but one thing's for sure, no one will ever tell them that they have too many!! Even now, my daughter talks of how Elijah had too many chromosomes, but now he's all better in heaven!
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