This has been a rough week for LIttle Miss Minion. Its been a rough week for Mr Minion and I as well.
On Tuesday, LMM had a regularly scheduled ultrasound of her head to make sure that her brain was developing normally. I got a call at work from the nurse practitioner, telling me that they had found enlarged ventricles in her brain. I asked what that meant and she said that the ventricles in her brain were bigger than they should be. No shit. After Googling “enlarged ventricles,” I was in full panic mode. I texted Mr Minion, who left work early to meet with the fleet of doctors I had been told would be convening in her room that afternoon.
When LMM was about a month old, she developed Group B Strep, which turned into sepsis, which (probably) turned into meningitis (brain inflammation). The meningitis might have caused a blockage that caused fluid to build up in her brain. This is called hydrocephalus, or “water on the brain.”
The neurosurgeon explained that the brain floats in a liquid called cerebrospinal fluid (CSF). CSF is basically Gatorade for your brain, containing water, electrolytes, sugars, etc. This fluid is created within the ventricles of your brain and is normally absorbed after flowing through the brain itself. In LMM’s case, this absorption is not happening. There is a blockage between the 3rd ventricle (in the center of the brain) and the 4th ventricle (toward the back of the neck). This blockage is damming up the fluid being created within the 3rd ventricle, putting pressure on the brain and pressing on the skull.
Luckily, since LMM is a baby, her skull is not fused together yet. The plates can spread apart to accomodate the increased pressure being put on it from the increase in fluid. In order to keep the fluid from building up and putting too much pressure on the brain, a procedure is needed to ensure that the fluid can drain properly. On Thursday, LMM had a VP (ventriculo-peritoneal) shunt placed inside her brain to drain the extra fluid into her peritoneal cavity, a space near her stomach, where it can be absorbed. Initital ultrasounds and scans confirm placement of the shunt and show that the fluid levels are going down.
What does all of this mean???
According to her pediatric neurologist, LMM has a small chance of physical delays in fine and gross motor skills. Fine motor skills are things like writing or handling things with fingers. Gross motor skills are things that use large muscles, like walking or swinging arms. She also has a slightly increased chance of seizures. On the other end of the spectrum, she could be completely fine. Time will tell. Babies have incredibly plastic brains and its possible for them to rewire around damaged portions, which would result in no visible problems. She might have slight delays in speech development or a learning disability.
According to her neurosurgeon, the shunt will drain excess fluid from her brain, preventing damage from occuring to her brain tissue. She will need shunt revision surgery periodically to lengthen the shunt or to correct it if there is a malfunction within the mechanism. He is very unwilling to guess on how this will affect her in the future and has repeatedly told us that the baby brain tissue is very resilient.
According to her nurses and her doctors, LMM is very lucky to have Mr Minion and I as parents because they know that we will do everything possible to give her every advantage we can.
It will be nearly impossible to tell if any future problems are caused by the enlarged ventricles. Preemies are at risk for nearly all of the same things that the enlarged ventricles could cause. In either case, therapies will assist her to reach her full potential. Due to her early gestational age at birth (28 weeks 0 days), she qualifies for physical therapists already. They do visits a couple of times a week to see how her muscles are developing and to make sure her movements are good. Occupational therapists also make weekly visits, currently focusing on improving her eating skills. She is enrolled in the follow up program since she was so early and small, so this will provide assistance after she leaves the NICU.
Her surgery was Thursday. Since they put her under general anesthesia, she needed to be put on a ventilator (vent). This is a breathing machine that essentially breathes for her while she is under and while she comes out of the medication that puts her to sleep. It took her until Friday morning to really come out of the anesthesia and to be extubated (have the vent removed). It takes a long time for Preemies to come out of it because they metabolize the medication so much slower than adults or even full term babies. Mr Minion and I stayed at the hospital Wednesday and Thursday nights. I got about 8 hours of sleep between the two nights. Thursday night, I spent most of the night standing next to her crib, holding her hand and trying to comfort her. She was coming out of the anesthesia very slowly and opening her eyes. Due to the placement of her vent, I couldn’t sit in the recliner and see her, so I stood on the other side so that she would see me when she opened her eyes. I slept from about 1am until 4:30am.
On Friday, she had a slow, relaxing day. She slept for most of it, ate an entire bottle for the first time, promptly threw half of it up, and slept some more. Saturday, she had some drainage coming from one of her ears and a slightl fever, and the doctors wanted to rule out an infection, so they started antibiotics, blood cultures, fluids, and an IV. Normally, they would just watch the ear, but since she has a shunt, they pulled out all the stops. Her 24 hour cultures came back negative today, and if they come back negative tomorrow, they will assume there is no infection and can discontinue all the medications and the IV. She was very, very fussy yesterday and the nurses said she was probably upset about the antibiotics. They can cause stomach aches and cramps, plus diarhea. Her nurse gave LMM some Tylenol, which really helped.
Today, her hematocrit levels came back low, which means that she is anemic, and that she needs another blood transfusion. She has had several so far, and Mr Minion and I were discussing how blood transfusions seem normal for us. Babies are unable to make their own hematocrit until around 38 or 39 weeks gestation and usually need transfusions every few weeks. LMM was unique in that she didn’t need one for several weeks after birth. Normally, they need one almost immediately. I held her hand and did a touch hold while they tried to get a good IV stick after her first one started leaking, but they couldn’t find a vein that hadn’t already been used. Babies’s veins don’t heal as quickly as adults, so once they are stuck, the veins take a long time to be usable again. They tried several times before deciding that she had taken enough tries. I’ve been dubbed “Nerves of Steel” by the nurses because I stayed with her the whole time. I figure if I can help her to be more comfortable, I should stay with her.
All in all, its been a long, exhausting week for the Minion family. Little Miss Minion is doing very well and was back to her old self today. Its amazing how quickly they can bounce back from things.