Waiting for Another Miracle

After Joe and I found out we were pregnant after trying for 9 months we were so excited! Since then a lot has happened and with so many supportive people in our lives, Joe and I get a little overwhelmed with keeping everyone updated.  We have decided to start this blog to keep everyone who is thinking of us and praying for us updated.  Since some people may not be aware of everything that has happened, I'll start from the beginning.

On May 17, Joe and I had a positive at home pregnancy test! Actually we had four positive tests... I had to be sure before we got excited.  About two weeks later I had some bleeding and was sent for an ultrasound to make sure everything was okay.  The ultrasound tech found a healthy, but empty, gestational sac.  The diagnosis was a blighted ovum, which occurs when the embryo attaches to the uterine wall and a gestational sac forms, but then the baby stops developing.  I was told I should naturally miscarry, but may not as the gestational sac was still growing, if I did not miscarry I would need a D&C to prevent infection.  Our doctor was wonderful and supportive of Joe and I wanting to make 100% sure of the diagnosis.  I had bloodwork done three times over the next 6 days to monitor my HCG levels, which if the diagnosis was correct should be rapidly falling.  However, my levels were rising.  We were told not be hopeful as my body most likely did not realize the baby had stopped developing and that was why levels were rising.  We did not listen, we had lots of hope.  Many, many people prayed for us as we went for another ultrasound on June 8th.  The ultrasound tech warned us she was not allowed to give us the results, we would have to wait to hear from the OB.  As she performed the exam I watched her face carefully to see if I could tell what she was seeing.  But, she was good at her job and I couldn't tell.  I asked if she could please tell us anything, and she just said, "I can tell you I see a heartbeat."  Joe and I both cried and thanked God.  I remember walking back into the bathroom to change and falling to my knees to praise God for proving the doctors wrong.  We then had another ultrasound one week later, as the doctor wanted to see a stronger heart rate and was still cautious about saying everything was okay as the heartbeat was at the very low end of average.  The night before the next ultrasound we prayed with our small group for a heart rate of 140 bpm at the ultrasound (exactly average).   The next day the baby had a heart rate of 141 bmps.  We had a miracle baby.  The OB was no longer concerned and said she was happy that doctors were sometimes wrong! We went back to excitement over our baby and shared our news with everyone.  We started looking at cribs and strollers for fun and looked forward to our 12 week appointment when we would hear our baby on doppler.

At our 12 week appointment on July 19th, the doctor could not find a heart beat using the doppler, though she was not concerned.  Through all the earlier ultrasounds they found I had a retroverted uterus, which does not affect fertility or the baby, but makes it harder to do imaging and use dopplers.  We were told not to worry at all, they were sure they could hear the baby moving, but we were sent for an ultrasound to get an accurate heart rate.  Joe held my hand as we waited to see our little miracle again.  The ultrasound tech noted it was already my fourth ultrasound and I commented that it was the first one I was not terrified for!  I had no idea that it would also be the last ultrasound I would not be terrified during.  The tech told us there was a nice strong heartbeat and let us watch our baby kick and wave and roll around.  She gave us pictures and asked us to wait for the doctor to clear us to leave.  After waiting awhile I made Joe leave for work, as he was already late and I was so sure everything was fine and it was routine to wait for the doctor.

After waiting about an hour, I was called into another room to talk to a doctor on the phone.  The doctor explained that they saw an abdominal wall defect and I needed to see a fetal specialist immediately.  They had gotten me an appointment the next day.  After I hung up the phone the ultrasound tech asked me if I had questions. I asked the only thing I could think of, "Is this really bad?" She told me I had to wait and hear from the fetal specialist.  I could tell by her face, the doctor's voice, and the looks that the receptionists gave me that it was very bad.

The next day Joe, my Mom, and I went to maternal fetal medicine.  After a long ultrasound we sat down with the doctor who explained that the baby had a umbilical pseudocyst, not an abdominal wall defect.  This is not really a big deal.  However, the baby had severe hydrocephalus (fluid on the brain) and very little brain development.  The cyst in combination with the fluid made a genetic abnormality likely.  We needed to come back in two weeks to see if there was any change.

At the next appointment, there was still a large amount of fluid on the brain, they confirmed that the baby had one umbilical artery (instead of the usual two), and also saw a concern for Chiari III Malformation.  There are four types of Chiari Malformations, III is the most severe and extremely rare.  It is similar to spina bifida, in that the vertebra do not close completely and part of the spinal cord is exposed.  However, whereas spina bifida is typically in the lower back or tailbone, Chiari Malformations are in the cervical spine (the neck).  Chiari III Malformation have a bad prognosis, lead to hydrocephalus and other neural problems.  I have since had an amniocentesis in an effort to find out if there is a genetic mutation causing the concerns, which will give us more information about possible treatment options or prognosis.  Those results are not yet back. During the amniocentesis, an enlarged fetal bladder was also discovered, which can lead to kidney damage.  There is fetal surgery available for this, but with all the other concerns we are not sure if it will be an option for us.

Our next step is to go to CHOP on August 28th.  We will have a full day diagnostic evaluation including extensive ultrasound, fetal MRI, and fetal echocardiogram.  After this we should know more about prognosis and our options.

I am currently stuck on the couch after spending Wednesday night and Thursday morning in the hospital due to dehydration from a stomach virus, so it seemed like a good time to start writing all this.  The medication they have me on so I can keep some food down does make me pretty out of it, so forgive me if the writing is not 100% clear.  When I am back to feeling better, I may have some more details to add, but at the very least I will post again after our appointment at CHOP.  Please keep baby Ferrara in your prayers.  Joe and I are preparing for the worst, but still praying for a miracle and good life for this baby.  We have seen miracles before. Isn't amazing how much you can love someone so tiny?