Tag Archive | pediatric neurologist

NICU Developmental Clinic

Every six months since she graduated from the NICU, Little Miss Minion has gone to the NICU Developmental Clinic for follow ups. Our first visit was nerve wracking. Only a week after graduating from the nicu, I had to transport my three month old to a medical center full of little kids (aka germ cesspools) and see how she was measuring up to her chronological age (spoiler alert:not very well, as was expected). We talked about her NICU stay…how she had come early due to my preeclampsia and HELLP syndrome…how she had stayed 84 days and developed sepsis, meningitis, and hydrocephalus…how she had endured brain surgery at 6 weeks old. They had me feed her, so they could see how she was handling the bottle and the Super Preemie sized bottle nipples. I left feeling like this was going to be our lives forever–shuffling her to and from various doctors and specialists. The weeks and months after that were as I’d expected. We saw pediatric neurologists, opthalmogists, hearing specialists, physical therapists, speech therapists, neurosurgeons, and our regular pediatrician. But as the months went on, the number of specialists began to dwindle as she “graduated” from their services. 

Today, LMM graduated from the NICU Developmental Clinic. I won’t have the official results for a couple of weeks yet, but here are some quotes from today’s appointment. 

“She’s absolutely perfect.”

“I can’t believe she has two shunts and presents like this.”

“I ran out of tests for this category. She blew it out of the water.”

“Didn’t she have some PVL (essentially, brain damage)? I am amazed at her development.”

The only thing we need to keep working with her on is expressive speech. The current theory is that she knows the words if they are given to her, but she has trouble “finding” them when she wants to use them. For example, if you give her a series of pictures and ask where is X, she will find it every time. But take those same pictures and ask “what’s that” and she has trouble. 

I’m happy to cross out another specialist from our list. If I’m not mistaken, this takes her down to just a pediatrician and a neurosurgeon, plus our early intervention team. She graduates from them this spring…and might even test out of the school district program that the early intervention shifts into at age three. 

All in all, it’s been a good day in the Minion household. 

1 Month NICU graduate

Yesterday was one month since Little Miss Minion was discharged from the NICU. She weighed 5.9 pounds that morning, and she weighed 7 pounds, 14.4 ounces last Friday.

Yesterday, she had a feeding therapist appointment, an occupational therapy appointment, and a pediatric neurologist appointment. These were all follow ups to make sure that everything continues to look good with her.

The feeding/OT appointment went really well. We talked about how much she eats, how often, how she generally does at feeding, etc. I told them we had moved her to a level 1 nipple and explained why, since she was discharged on an ultra preemie size. She was getting tired and angry toward the end with the ultra preemie because she had to work so hard to get anything out. Since she wasn’t dribbling or coughing, we bumped her up to the preemie. When the same thing happened, we bumped to level 1. They were very impressed. We are cleared from having to come back to either of them, unless there is a problem in the future.

The pediatric neurologist visit went well too. He did some measurements, tested her reflexes, looked at her muscle tone (whether her arms and legs flex and relax), and measured her head circumference. We are cleared from him for 6 months. He’ll want to make sure that she is hitting her adjusted age milestones on time. So when we come back in February, when she is chronologically 9 months old, he will want to make sure that she is at least doing things that a six month old can do.

I finally busted out What to Expect the First Year, since she’s 1 month adjusted now. She can do everything for a 1 month old and about 1/2 oz the 2 month stuff. So she’s progressing really well. It does mention smiling, so I’m going to have to work on that. I don’t want her to inherit my chronic bitch face. 🙂

I’m going to a new mom group tomorrow. One of my friends from my old work invited me, and it will be nice to get out of the house for a while. I’ve been looking for preemie groups online and then it finally occurred to me that there aren’t any because none of us can go out!

Looking forward to the long weekend!

Appointments Everywhere

For being 2 weeks old adjusted, Little Miss Minion is a very popular girl. This week, she has an appointment with her neurosurgeon to check her shunt and make sure everything is working correctly. Next Monday, she will be having a visit from her physical therapist to assess her needs and observe her progress. In a couple weeks, she will have a pediatric neurologist appointment and a NICU follow up occupational therapy appointment.

All of these specialists are looking at her to see if there are any issues that we need to work on. Having hydrocephalus and the shunt, in addition to being so early and so small, puts her at a slightly higher risk of having fine or gross motor skill delays or developmental delays. Her chances are fairly low, given the reasons for the shunt and the fact that she was born early because of preeclampsia and not some structural issue that impeded blood flow or oxygen. The specialists are here to catch any issues early and provide ways to correct them before they become problems.

We’ve increased her food to 80mls. She seems to be handling it very well. She gets reflux medicine twice a day and that seems to be helping with her general comfort level and her behavior during feedings.

Her bath the other day went well. She likes the feeling of having her hair washed and rinsed–but who doesn’t? She hadn’t felt water before, so it was fun to watch her experience it. I wrapped her in one of her hooded towels to dry her off and she just laid there cooing and looking around.

She’s pretty much adorable.

First Surgery

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.