On August 20, 2010, my husband Joshua and I were waiting anxiously to find out if our baby was a boy or girl. We had finally reached the half way point into this pregnancy, and were at the OB for the 20 week ultrasound! We were elated for about 15 minutes to know we were having a baby girl, who we preemptively chose the name Marlena Nichole. Then came the bad news. We were pulled into a room where the doctor explained that there were some "concerns."
Marlena has since been diagnosed with severe hydrocephalus. We have had several ultrasounds to monitor her condition and also an MRI. The MRI showed that Marlena's hydrocephalus is isolated, which is great news! It also showed that her hydrocephalus is caused by "aqueductal stenosis," which means there is a blockage of fluid in her brain. We also had an amniocentesis done to rule out anything genetic or any infection. The amniocentesis results came back great showing that Marlena's chromosome structure is normal.
So what does all of this mean for little Marlena? Her condition will continuously progress, causing severe brain compression and pressure in her head. Her brain tissue at this point is probably paper thin. Her head is also going to be abnormally large in comparison to her body when she's born, because her head has to make room for all of the fluid that is constantly filling up the spaces where her brain matter should be.
The good news is that although her case of hydrocephalus is extremely severe, it can be treated with a device called a "VP shunt." This device will be put into Marlena to drain the excess fluid on her brain, in hopes that her brain tissue can expand back out into the spaces where it was compressed. This will be done within her first week of life, if things go as planned, by a neurosurgeon. The shunt is a tube, that is inserted usually into the back, right side of the head, and then completely goes underneath the skin, down the neck, over the collar bone, and through the abdominal wall, so the fluid can be reabsorbed by the body.
This pregnancy has been a bumpy road, so far. Once Marlena makes her arrival, I am sure it will be even bumpier. I have become very close to God, and I have to accept that whatever happens is a part of his plan, even if I don't see the big picture, I knew he does. I know he loves me, and he loves Marlena so very much. So many people here already love this baby. This feels wonderful.
The plan currently is to have another amniocentesis done on December 7th to check if her lungs are mature enough to breath in the outside world. The results will take a few hours to come back, and if the results show mature lungs, there is already a c-section scheduled for 2:30 P.M. that day. In the event that her lungs do not come back with mature results, a c-section will be scheduled for a week after that.
I know so many people are praying for this baby including myself. I love my family and friends, and my husband, and our beautiful son,Vincent, who is a soon-to-be big brother. I know Vincent will love his baby sister unconditionally just as we all will. The support has been wonderful and I know it will only continue after she is here.
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