Kelly's Korner is hosting a show us your ministry and I wanted to post a recap about Isabelle for that so here goes. Maybe it will help someone in a similar situation.
It’s been 15 months since we were told that Isabelle would never survive. Well she’s 10 months old now and continuing to make progress. Her original diagnosis at 18 weeks of my pregnancy was that she had anencephaly (no brain) and that she would never survive and most likely would not survive until term. The rest of my pregnancy was rather difficult in the sense of just knowing what the doctors were telling us and we were trying to keep everything as normal as possible for Quincey because she was so excited about her baby sister.
Throughout the rest of my pregnancy I continuously prayed that God would heal Isabelle and that the doctor’s diagnosis would be wrong. With every ultrasound I had I would get the technician to check her head just to see if there were any changes. Even though there never were any changes on the ultrasounds I just couldn’t completely grasp the thought of losing Isabelle so quickly but I knew that God would get me through whatever happened because it was his plan.
When Isabelle was born we were prepared that she might on live for a few minutes and then she kept fighting and showing us that she wasn’t going anywhere. The doctor ordered an ultrasound on Isabelle’s head before we went home and they could not see her brain. We went home with her under Hospice care and for two weeks I watched her constantly waiting for some change that would show she was losing her battle and that she was going to be with God.
Thankfully I have gotten to keep her on this side of heaven. We went to her doctor and he sent us to a neurologist who completely changed her diagnosis to hydrocephalus. That doctor sent us to a neurosurgeon who quickly informed us that Isabelle would not die from her condition she would just eventually get to the point where we would be unable to care for her unless she had surgery to place a shunt in order to control the overproduction of cerebrospinal fluid. She had so much fluid on her brain that it was just a thin line around the outside of her skull when they showed us the pictures from the CAT scan and MRI.
Isabelle has had two surgeries, the first was choroid plexus coagulation (to help slow the production of cerebrospinal fluid) the neurosurgeon did the first surgery in order to give Isabelle a chance to put on some weight being that she was so little. A month later when the fluid started to build back up on her brain the neurosurgeon placed a VP shunt.
Isabelle had her first seizure in July; the neurologist we saw after she was put on anti-seizure meds said that from her scan it appeared that she was missing the communication portion of her brain. Around September Isabelle started cooing and babbling. Now she squeals, really LOUD!
Isabelle has delays but she is making progress. Right now she is starting to support her head better on her own. She has cut two teeth, is eating baby food, sleeps through the night (mostly), plays with a few toys, really likes her mobile on her crib and will give you the biggest smile.
Through this journey I have learned that no matter what someone tells you they are never the final authority in God’s plan for our lives. Only God controls the outcome of every situation, just pray and ask for his guidance and the faith that he will provide you with what you need.
4 years ago
