Friday, July 25, 2014

CMV

And this begins the story of my second....he has been an adventure!

My second son is a blessing to our family. We tried for months to get pregnant and when we finally found out we were we were moving two months later. I went in for our confirmation appointment with our OB and I kept telling him that I thought something was wrong. He asked me why I thought that and I explained that I am more exhausted and nauseous than I was with my first and that I have no energy. He said that I am fine and that each pregnancy is going to be different.

We moved when I was three months pregnant and I started looking for a new OB. At our 20 week ultrasound (what they now call anatomy ultrasound) the technician couldn't tell us anything much less if he was a boy or a girl. She acted very odd, almost like she was panicking. We did the ultrasound vaginally and on the belly which was really weird to me. We left the room a little confused and we didn't know our babies gender. After a little while of waiting our OB came in and explained that the amniotic fluid was really low and that it looked like his brain was underdeveloped, he started to talk about downs syndrome and genetic disorders and being tested for them. I looked at him and said that there is not history in my family of any problems genetically but agreed to do the blood work. We were referred for an emergency appointment to see a maternal Fetal specialist.

The specialist that saw us did again another in depth ultrasound (it took 45 minutes to scan that kid) and we found out that we were having another boy (yay, we were hoping for a girl, I'm happy with a boy). The Dr. came in and explained what exactly was wrong....He had low amniotic fluid, Bright bowels (we later learned meant blockage) underdeveloped brain and he was way to small for his age (he was measuring an entire month under his gestational age. We were told that he had no idea what was causing the problem (the blood work did not indicate any genetic issues) and that he needed to draw more blood and test for more uncommon genetic disorders and for Cytomegalovirus (CMV)

All our blood work was negative except the CMV tested positive, I had contracted the virus as some point during our pregnancy but never showed any symptoms or problems from it. The Dr. said that the only way to find out if the baby is infected is to do an amniocentesis and test the amniotic fluid., at this point we had seen him twice since our first visit and the babies heart started to get enlarged. We did the amnio and found that the fluid was infected so the chances of the baby being infected are very high thus showing what was causing all these problems with our baby. He said we don't know the extent of the infection because we can't test the placenta. We didnt have a lot of options because treatment for this infection is still in trials. We didn't qualify for any trials because we were too far along and this kind of infection actually infecting the baby isn't very common. The Dr. discussed with a colleague and he decided to do a treatment of Cytogam in the hospital. It is commonly used on people getting organ transplants but has come to show some effect on the CMV. We were in the hospital for 10 hours the first time for a 4 hour IV treatment, I got a cold but my belly exploded and I finally started to look pregnant. We did two treatment of Cytogam, one at 24
 weeks and again at 28 weeks. Our baby started to improve, his growth progressed to being only 2 weeks behind gestation, his bowels became normal, and the fluid expanded. He still showed issues with his brain and he had developed a Cyst on his cerebellum. I went on acyclovir for the remainder of the pregnancy and gave birth on March 2. He was born 6lbs 11oz and 18.5 inches long. He is a strong little boy.

We did ultrasounds and MRI on that jelly bean and we found that the he will be mentally and physically handicapped for the rest of his life.The cyst on his cerebellum could effect his ability to walk, sit or even crawl but we will never know until he actually starts hitting his milestones.  Even at 4 months he is the happiest baby and he just goes with the flow. He takes a little longer the learn how to do things that other kids will do super easily. We have 4 different specialists following him (i think out of curiosity instead of necessity) and we have had a scare with seizures. The hardest part is when people compare their child to mine, he is not going to do amazing outstanding things like your child, he won't start crawling right away. It breaks my heart some days and sometimes I feel so alone and the only strong person in my family.I feel like I have no one who truly understands what I am going through with my baby and some days I just want to pretend like nothing is wrong. I have been through hell with this pregnancy and I am trying to be so strong. CMV is not regularly tested for and if it is it can be prevented from early on. Why not test just a little extra to prevent something like this. I love my baby no matter what and I know that we are going to be the best parents for him which is why he was sent our way. He is so cuddly and perfect for our family and his smile and eyes could light the world.........
He is the perfect addition to our family to add to our farts and giggles.







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