Archive | September 2016

Hydrocephalus Awareness 

I first became aware of hydrocephalus in July of last year. Little Miss Minion was still in the NICU and I had gone back to work to allow for time off once she came home. I got a phone call from one of the neonatologists telling me that they had done a follow up head ultrasound (standard procedure to check for brain bleeds) and that they had noticed enlarged ventricles. I was told that a specialist would meet us at the NICU that afternoon to talk to us some more about what that actually meant. I immediately went on break and looked up “enlarged ventricles” on my phone. I read about brain damage, developmental delays, seizures, and death. The images that the search turned up were of babies with basketball sized heads. When Mr Minion and I arrived at the NICU and met the specialist, we were in shock. 

The specialist, who turned out to be a neurosurgeon, explained that the meningitis and sepsis that our daughter had survived a few weeks earlier had caused damage in her brain. Along with four tiny spots of periventricular leukomalacia (brain damage), the infections had blocked the third ventricle of the brain (which functions like a drain) and had also caused the brain to either create too much or not absorb cerebrospinal fluid fast enough, causing a buildup of fluid inside LMM’s brain. The only “cure” was to insert a man made drain into her brain: a ventriculoperitoneal shunt (VP shunt). This would become a pathway for excess fluid to drain out of her brain, where it would cause damage, and redirect it into a space near her stomach to be absorbed. 

Our preemie, who weighed about 4 pounds at the time of her surgery, underwent her first brain surgery at just over 2 months old. A few weeks after she came home from the NICU, she needed another. A few weeks later, she had another. And a few weeks after that, she had one more. 90% of shunts fail within the first year. 

Today, you would never know by looking at her that our daughter is a Hydro Warrior. The only physical signs are two shunts in the back of her head, now hidden by hair, some scarring where her ETV was done, and some scarring on her stomach from where the shunt drain portion was placed. All of the tubing is internal. However, we live in the shadow of Hydrocephalus. At any moment, her ETV could close. A shunt could become blocked or broken. She could get a shunt infection. Any of those things would be an emergency situation, requiring an immediate trip to the ER and would result in surgery. There is no way to cure hydrocephalus. There is only treatment. 

Happy September!

It’s been a busy couple of weeks here. Little Miss Minion is fully mobile now, walking more than she crawls, so we’re pretty much chasing after her all night. Good news: we’ve pretty much toddler-proofed the living room and dining room. You can read this as “moved everything more than four feet off the ground and cleared off end tables.” I also had to put a PIN lock on my phone, since Miss Smartypants figured out how to open it and was texting gibberish. 

This weekend,  we are going to start transitioning her to “people food,” aka getting her away from purees all the time. I’m going to steam a ton of veggies and package them up for her to feed herself while we eat dinner. She eats tons of finger foods at daycare, but we haven’t gotten in the habit of doing that at home yet. I’m also terrified of her choking, but we DID have to take a choking/CPR class before we were discharged from the nicu. A nice side effect of this change is that Mr Minion and I will be eating more veggies too. 

We got her official nicu follow up report in the mail yesterday. It’s pretty much everything I already talked about, but they did call her IUGR at birth, which is not something that either Mr Minion or myself remembers. IUGR stands for intrauterine growth restriction, and means that the baby is smaller than they should be for their gestational age. It’s pretty common in preeclamptic delivered babies, since the placenta is usually affected by the high blood pressure and can’t function as well as it should. LMM was 1 pound, 14 ounces and 13.5 inches long at birth. The average stats for a 28 weeker are 2 pounds, 8 ounces and 14 inches long. It doesn’t really mean anything now, since she has stayed on her growth curve and isn’t having trouble gaining weight, but it is important information to have if I ever have another baby. 

LMM’s current favorite things: the Ducktales theme song, “flying,” being upside down, veggie straws, food in general, Mr Minion, and her light up bouncy balls. Current dislikes: being told no. 

Things are getting interesting.