Today we went to EVMS and saw the specialist. They did another ultrasound and confirmed that she indeed has severe hydrocephalus. The ventricles in the brain should measure about 10 mm, hers are measuring 25-30mm. Almost 3 times the normal size. This is due to fluid. Currently she is 4 lb 12oz (completely normal) and all other organs look completely normal as well. Her stomach and bladder is functioning well. At this time her head is at a normal size but could grow due to the fluid. We will have to have another scan in about 2 weeks to see if we are dealing with progressive hydrocephalus. The Dr. stated that it is hard to say if all of her brain tissue is there and if it will be viable due to the amount of fluid. At this time we have no idea what her prognosis will be.
We are currently working on trying to find out what has caused this. It could be a couple of different things.
Chromosomal (we did not have an amnio done at 18-20 weeks b/c everything was with in normal range) They do not feel this is the cause.
Toxoplasmosis : Cats can carry this virus, poorly washed/cooked or contaminated foods. In adults the symptoms are mild, swollen lymph node(s), tiredness, sore throat..... I went to the dentist on 11/11 and he noted that my left node in my throat was swollen and that week I was not feeling well.
Or Cytomegalovirus: Typically spread through day cares and etc.
Blockage causing the CFS (Cerebrospinal fluid) not to be able to flow. Or the pathway is not wide enough.
We are scheduled for a amnio today after 1pm. They will be able to test for Chromosomal and both viruses. We will not have the results until next week sometime. We have to go to the hospital for this test b/c of the risk of pre-term labor.
We are also in the process of obtaining an appointment with a Pediatric Neurologist, the same group that Tori goes to. Sometime next week, and he will evaluate the images further, decide if she needs a Fetal MRI and will develop a plan of action/treatment after her birth.
Has been moved from Chesapeake general to Sentara Norfolk General, CHKD is right there and will eliminate transport and us being separated. I will be able to visit her while staying at SNG.
We asked about any benefits with taking her early to relieve the pressure on her brain but they find that only causes additional complications b/c then on top of her condition she has possible pre-term issues.
Most likely, I will be scheduled for a C-section around 38-39 weeks. The Pediatric Nero will evaluate her promptly and will decide when to place a shunt to begin drainage. At this time we have NO idea what her prognosis is.. She could come out of all of this will no or mild limitations, or severe mental and Nero limitations or could not survive at all.
Our families emotions have been all over the place... We ARE placing all events in Gods hands and know that he knows the outcome already and he will prepare us for this journey. He has blessed me with a WONDERFUL man that is so supportive and amazing. We have many new photos of Lily and I will work on scanning them and posting them.. She is an Angel.
I want to Thank all of you for your support and Prayers through all of this.. Please keep praying. I will post an update today after the amnio...
Please feel free to call us anytime... Love to you all!