Tag Archive | NICU

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. 

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Hydrocephalus Awareness Month!

Happy September! 

September is Hydrocephalus Awareness month. In case you are a new reader, my daughter Little Miss Minion was born 12 weeks early and developed hydro as the result of a series of complications from an infection, sepsis, and meningitis. She had her first surgery at around 2 months old, followed quickly by three more within two months. We are coming up on two years since her last surgery. 
Hydrocephalus is a tricky disease. For the caregiver, it creates a constant see saw of “is it or isn’t it” because it can mimic almost any illness or general toddler behavior. Headaches, nausea, vomiting, crankiness, sleepiness… could be typical toddler behavior or it could be hydro rearing its head. 

The only cure for hydro is brain surgery. That’s not ok. 

Two Years

Two years ago today, I was in a hospital bed on day 2 of hopefully many more on bedrest. I was getting frequent visits from my medical team, consisting of nurses, doctors, specialists, maternal fetal medicine, my OB, and two people from the nicu. My OB was hoping to keep Little Miss Minion and I healthy enough to make it to 32 weeks. The maternal fetal medicine specialist (high risk doctor) gave us two weeks in a best case scenario, which would have put us at 30 weeks. I don’t remember who the nicu people were or what their positions in the unit were, but I remember the feeling of panic as they explained all the things they could do if Little Miss Minion had to come early. I remember words like resuscitation, breathing tube, ventilator, developmental delay, and prognosis. I remember thinking that there were an awful lot of people coming in and out of the room during the time the nicu people were with us. 
When Mr Minion went back to our house to grab more clothes and things, since we weren’t expecting me to be admitted the day before, I remember starting to have trouble reading my book. The words weren’t making sense. I read the same paragraph over and over before finally giving up. I sat in my bed, trying to ignore the uncomfortable straps of the monitoring belt wrapped around my stomach. I watched the numbers on my blood pressure readings slowly climb, trying to will them back down. 150/90, 175/95…my prepregnancy readings were usually around 110/70 or lower. One of the nurses came in to check on me and moved the monitor screen to face away from me. With nothing else to look at, I watched the line of the fetal monitoring contraception move. Every jump indicated that Little Miss Minion was doing well, moving around. After a while, the line seemed to be flattening out. I called the nurse, they did a bunch of stuff to try and get Little Miss Minion moving, and nothing worked. They called in an ultrasound team who did a biophysical profile on her. It’s a half hour ultrasound where they count how many times the baby moves and a couple other things. She didn’t move. I watched her heart beat, the only thing that moved on the screen. 

Soon after that, I suspect an urgent  conference of my medical team commenced and a few minutes later, I was on the phone with Mr Minion, who had gotten to the house and wanted to know if I had thought of anything else I wanted. The doctor came in, so I got off the phone. I remember him telling me that my blood pressure wasn’t responding to the magnesium anymore and that Little Miss Minion needed out. Tonight. As soon as they could prep me.
I called Mr Minion and told him. As I hung up, swarms of people poured into the room to get me ready. I continued to call and text people that they were prepping me for surgery and that the baby was coming. And the rest is history. 
Today, I watched my two year old daughter play with bubbles. She ran up and down the hall of our house, played in her sandbox, and drew on an easel with markers. Two years ago, I watched a blue screen descend in front of my face as a team of doctors and nurses saved my life and saved my daughter’s life. I watched as someone held out a tiny, tiny, tiny baby, her head engulfed in a newborn hat that was almost as big as she was, her skin purple and transparent. Everything I had expected was imploding before my eyes. 
Two years ago, our NICU rollercoaster ride began. It started with a stomach churning drop as our one pound, fourteen ounce preemie was brought into the world twelve weeks early. There was another drop over a cliff as she fought off gbs, sepsis, and meningitis. Things smoothed out as we turned the corner of what would be our halfway point. We shot down another towering drop as we found out about her brain damage and hydrocephalus. The subsequent surgery and recovery were bumpy. But then, we could see the exit. Eighty four days after starting this ride, we got off and started the rest of our lives. There are still bumps, potholes, rainy days, and times when we trip and fall. But the important thing is that we get up, dust ourselves off, and KEEP GOING. 
Happy birthday to my daughter, Little Miss Minion. I’m so happy I get to see you grow up. 

May is Preeclampsia Awareness Month!

As frequent readers of this blog will know, my daughter, Little Miss Minion, was born early because I developed severe early onset Preeclampsia. This month is Preeclampsia awareness month, so I will be sharing information about this very important medical condition and how it has affected me and my family. 

Fact: Preeclampsia occurs in 2-8% of all pregnancies.

Fact: preeclampsia and other hypertensive disorders are on of the leading causes of maternal death worldwide. 

And the results are in….

We got the official report back from the NICU follow up developmental clinic. I was pretty optimistic about it when all I had were the preliminary numbers. I read it as soon as it came in the mail and it was even better than I thought. 

Here’s the deal: they do bunch of skills tests with Little Miss Minion and they score her on how well she does. It’s pretty much three hours of playing with her with various toys and equipment. Luckily, she’s a pretty easy going kid, so it usually goes pretty smoothly. 

The stats:

At the time of the evaluation, she was 22 months chronological, 19 months adjusted for prematurity. Since she was born three months early, we subtract those three months from her chronological age to give her time to catch up. So for these tests, we are “expecting” her to score closer to 19 months than to 22 months. 
The scores: 

Receptive communication: this is how well she understands things that other people say. Ex: we ask her to bring us something or to point to a particular object. She scored at 18 months, which falls into the “average” range. 

Expressive communication: this is how well she communicates with others. Ex: pointing to things that she wants, asking for food, toys, etc. she scored at 18 months (average) again. 

Gross motor: how well she moves the large muscles in her body. Ex: running, jumping, etc. She scored 18 months here as well, so average again. 

Fine motor: how well she moves the small muscles in her body. Ex: coloring, picking things up with fingers. She scored at 20 months here, which is still considered average.  

Cognitive: how well she interacts with her environment. Ex: figuring out how to find hidden objects, placing puzzle pieces correctly, etc. She scored at 21 months here, which is considered high. 

All in all, she scored at the Average category. That means that she is performing at the same level as other kids born on her due date. This is huge. The last part of the visit is a meeting with one of the neonatologists from the NICU where they discuss the general results. The doctor had to double check his papers because of her nicu chart. Little Miss Minion has hydrocephalus, which usually impacts some aspect of development, and she also has brain damage from the infection. So he was shocked that she was doing so well. His notes include this surprise as he states that her progresss has been very reassuring, given her history of sepsis, hydro, meningitis, periventricular leukomalacia, and four brain surgeries. 
The upshot of all of this is that she is well on her way to catching up!

NICU Development Clinic

Yesterday was Little Miss Minion’s third NICU clinic. This is the big appointment where she is evaluated by physical therapists, occupational therapists, speech therapists, a neonatologist, and a NICU nurse. We don’t have her official write up yet, but I have the rough numbers. She did really well!

For those who are unfamiliar, her age is measured by two numbers. One is her chronological age-this is how old she is based on her birthday. The other is her adjusted age-this is how old she is based on her due date. So, by her birthday, she is 22 months old. By her adjusted age, she is only 19 months old. This doesn’t really seem like much, but in terms of early development, it is a big deal. 

Her speech was scored at eighteen months, which is a HUGE improvement. This score technically means that she is no longer considered delayed in speech, which is amazing since she’s only had about a month of speech therapy. They gave us some tips on how to encourage her to talk, but said that she is so close to really talking.

Her cognition was scored right at her chronological age, which is also fantastic. This means that she is scoring three months ahead of her adjusted age, which means that she is pretty much caught up for now in that area. With her early birth, the hydrocephalus, and the brain damage she incurred as a result of either the meningitis or the initial pressures of the hydro, this is really a best case scenario. The doctor told me he had to double check her chart to make sure she was the right kid. 

She’s pretty much on track with her adjusted ago with regard to her fine and gross motor skills. They looked at how she walks, how she holds things, whether she can stack blocks, how she picks things up. 

All in all, I think her average score was twenty or twenty one months, which is great, great news. I’ll post more details once we get the official results in a few weeks. But for now, yay for LMM!