Blythe, 10 months

Blythe today!

I had a very typical pregnancy with Blythe. She is my third child an not unlike her brothers. Blythe Raye was born at 40 weeks on October 24, 2016 weighing 7 pound 11 ounces. The first thing the doctor. said was how big her head was, but in all honesty all my kids heads were big. She was perfect!  Blythe was a very content baby, she breastfed and slept like a champ immediately.

When Blythe was two weeks old I noticed she just didn’t seem to stay awake long. She was almost too content. I remember sitting outside watching my boys play and I took a selfie with her. I thought to myself her head has gotten so round and squishy on top. An although I know it’s best to stay away from the internet, I googled bulging soft spot. BAM! It was article after article about hydrocephalus. I just knew. I called the pediatrician immediately and even though I begged, they couldn’t see her until the next day. I didn’t sleep any that night.

We go to the Dr the next day and as soon as he walked in he knew it too. He went out of the room and was gone what seemed like an eternity. When hecame back he brought another doctor with him. They laid it out an told me they had already called ahead to Children’s of Atlanta. I was in a blur. I was all alone and I was so scared. I left there with the clothes on my back an made the hour drive to pick up my husband, and we made it to Atlanta in another hour. I silent cried the whole drive.

When we got there we didn’t wait long at all. They got us back did vitals and small tests and a CT, at this point things got worse. I had already wrapped my thoughts around my tiny 2 week old baby having hydrocephalus and all that would entail for her future. They came in and told us she had brain calcifications and they would be doing an MRI shortly.

While she was having her MRI I sat in the room alone with her. She finally stopped screaming and drifted off to sleep while an enormous machine was whirling and taking pictures. At this point it’s after 9 pm and the neurosurgeon pulls me out to talk about his findings. I don’t think at that point I truly could grasp what everything meant. What I did understand is that she was having surgery the next morning to place a shunt, and that my child, my two week old infant was having brain surgery.  My baby was going to be put under and cut, she was going to have a hole drilled in her skull and have a foreign mechanism placed to save her life.

We got settled in for the night, and tried to rest… yea right! Her surgery was supposed to happen early but sometimes things don’t go as planned. So just before lunch we took her down an prepared to hand her over to the surgeon. She cried and cried for hours, she was so hungry. I cried because I couldn’t soothe her at all. Finally they took her and within 2 hours she was out and up from recovery! She was so content when I could feed her. She truly acted like nothing happened! The difference was almost immediate! Her eyes weren’t pushed down anymore and her head was much smaller. You could see all her sutures and soft spot now.

The next day Infectious Disease doctor came in and talked to us about what caused her hydrocephalus. She was born with Congenital toxoplasmosis. The toxoplasmosis is a brain infection caused by a parasite I passed to her in utero around 15-24 weeks based on her calcifications. The toxoplasmosis caused the hydrocephalus and  retinochoroiditis. Unfortunately we were given a very grim prognosis for Blythe. I was told she wouldn’t function normal. She wouldn’t walk, talk, or think. She would essentially be dependent on me for her entire life. A piece of me died that day.

We took one day at the time. We were finally released to go home after  two weeks in the hospital. There are so many unknowns of Blythe’s future. Today she is almost 10 months and exceeding every expectation we had! She is growing, meeting milestones and thriving! It’s not always been an easy road but we know she is exactly who she is meant to be! She will have her 9 month shuntiversary on aug 12th! I will always hold a spot for all her amazing nurses, doctors and her amazing neurosurgeon at Children’s Healthcare of Atlanta! But I hope I don’t see them anytime soon!

2 days old

2 days old

2 weeks old. The day I knew something wasn't right.

2 weeks old. The day I knew something wasn’t right.

Blythe Day she was admitted and diagnosed. Night before surgery.

The Day she was admitted and diagnosed. Night before surgery.

Blythe Night she was admitted to CHOA

The night she was admitted to CHOA

Tell us about your journey with hydrocephalus!

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