The Past

Hello, my name is Gina and I am starting this blog to hopefully provide some hope for those, like me, who were told that there is no hope...

Last year, almost a year ago today, I found out I was pregnant!!! YEA! I was so excited...my whole family was excited for me. About 10 weeks into the pregnancy I told my Doc I had a small amount of bleeding, so he sent me for an ultrasound. Toward the end of the u/s the technician got very quiet and said, 'ok, I am going to have this reviewed by the radiologist." The next day my OB called me to say that they found fluid behind the baby's neck and that if I had a nuchal translucency test scheduled, I needed to call and have it moved up. Of course I was in a total state of panic. My husband and I were going on vacation....I wanted to cancel and stay home. My family convinced me that it would not be a good idea to stay home and worry for the next week, so instead I went on vacation and worried anyway! We came home a day early for the scheduled nuchal translucency test. I will never forget the cool, damp day and the cool feeling in my bones that day. After the test, the technician told me that the Doctor would like to speak with my husband and I in her office.

This next part is embedded in my brain, she said:

The nuchal translucency score was 5.9. (which is off the charts high)

There is a 20% chance that my baby would be chromosomally normal

I may want to consider termination depending on the severity of the baby's disorder because my life may be at risk if I carry the baby to term.



It would be an understatement if I said I was devastated. I could not speak, the tears would not stop. The Doc then advised me to have an amniocentesis to determine what disorder my child has and a fetal echocardiogram to check for heart defects.

I had to wait over two weeks to have the amnio and another 10 days for the results. (By the way, during the amnio they told me the baby was a girl, but it was SOOOO hard to be excited through the worry.)

So....the results came back....NEGATIVE! What???? My baby was chromosomally Normal! A few weeks later, the baby's heart was checked and I was told that she has a perfectly healthy heart. For the next few months, I enjoyed my pregnancy...well as much as anyone can enjoy getting huge, swollen, tired, and non mobile! But I was happy despite all of the discomforts of being pregnant.

Until.....my water broke....five weeks early. Although, I never for one second though that anything could be wrong even though I was early.

I delivered a baby girl, Alaina Grace, on Christmas Eve...my little miracle at 5lbs 6 oz, 17 3/4 inches. She did go to the NICU, but I was reassured that she was doing great and that we should be able to take her home in about a week.....oh how things never turn out as we are told! From the first time Alaina was fed, she threw up...all of her feeding. After about a week of starting and stopping her feeds, a Doctor came in the NICU to have a chat with me...he told me that my baby has a very rare type of situs inversus. Situs what??? Basically her stomach and her liver are on the opposite sides, but her heart is in the correct place, and they were unable to locate a spleen, which helps to fight infection. At that point, that is all that they said, but I could not stop crying. Maybe it was the post partum depression, maybe it was because it had been a week and my baby was still in the NICU, and maybe it was because the way the Doctor put it, it sounded like there was no hope.. of course it was probably a combination of all of these...I just cried and cried. I thought, "come on, what else can I go through? Haven't I been through enough?" After a few more days of tests and my baby not eating because she kept throwing up, I was told that my baby was going to be transferred to Children's Hospital, where she could get better care and possibly surgery. I was so very naive, I asked, "when will they bring her back to this hospital?" I swear the nurse didn't have it in her to tell me that she probably wouldn't be back, so she just said, "every situation is different."
So, off we went to Children's Hospital, where things moved very quickly and many, many Doctors came to evaluate my little one. There I learned that there is a 1 in 22,000 chance of having situs inversus where the heart remains on the left side and that the odds having a severe heart defect with this type of situs inversus is 95% and that the Doctors were amazed that my baby's heart is healthy. I also learned that her intestines were malrotated and that she needed surgery to correct it. That happened within a few days. Alaina recovered quickly, but when it came time to start eating...well let's jst say I needed to bring a change of clothes when I visited....yes, it was projectile. Weeks went by of starting feeding...stopping....starting...infection in the colon...stop feeding.........over and over again. Then something just clicked inside that tiny tummy of hers...things just started to work! So, after 9 weeks in the NICU, my little miracle came home!!!