Preemie Awareness Month

It’s that time again!

I saw this poem today and wanted to share. 

It reminds me of hearing all the stats in the NICU about how small and early LMM was, and how she might have this problem or that one. And then listening to HER, as she proceeded to kick the crap out of the statistics and showed us what strength really means. 

So happy preemie Awareness month. And remember: anything can happen, child. Anything can be. 

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Brain Surgery #5

First of all, Little Miss Minion is doing well and we are home. Don’t let the title of this post scare you. 
Monday night, we noticed that LMM was acting like she had a headache. She still doesn’t really talk much, but she was rubbing her head and crying off and on. She had speech therapy that night and seemed ok except for the head rubbing and generally seeming a little “off.” Tuesday was more of the same, but the problem with hydrocephalus is that the symptoms of a shunt malfunction are very subtle until they aren’t anymore. Irritability, being cranky, headaches…but when it happened for the third day, we listened to our guts and took her to the ER. They did a “shunt series” X-ray, which takes pictures of the shunt in its entirety to make sure that all the pieces are where they should be. Sometimes the distal catheter (the end where the extra fluid drains from) gets moved or blocked. Sometimes the system gets disconnected. Everything looked ok on the shunt series but they couldn’t explain the crankiness and headaches so the neurosurgeon wanted a CT scan to see the ventricles. Sure enough, one of her shunts had stopped working so the cerebrospinal fluid wasn’t draining like it should have been. 
They admitted us to the PICU (pediatric intensive care unit) to monitor LMM and decide on the timing of the surgery. As soon as we knew the shunt wasn’t working, surgery was a certainty. There is no other way to “fix” hydro. So we were taken to the PICU to spend the night. 
LMM is now two, and she knows a little bit more about what is going on. She handled it really well, and fell asleep on me while we were walking down to the surgery suites. They gave her a little bit of a sedative to keep her calm while they took her back to get prepped and while it was kicking in, she started cracking up laughing. It was a nice stress reliever. 🙂
The neurosurgeon came out after surgery to talk to us and said the surgery had gone well. We got to come back and see her in recovery while the anesthesia wore off soon after. After a few minutes back in recovery, we were cleared to go back up to the picu. As they were wheeling her out, the nurses at the central station all waved to her and she waved back from her bed. 
Within an hour, she was chugging water. An hour after that, she was onto jello, and soon after that, she was cleared for real food. Everyone was impressed at how fast and how well she was coming off the anesthesia. Last time, she was groggy and slept for most of the day. That was also about 23 months ago, so she was much smaller. 

We were discharged the following afternoon and LMM has been back to her regular happy self. 🙂
Many thanks to the incredible nurses we had this time. This hospital is not our first choice, but it is the one that her neurosurgeon primarily works out of. Our nurses were hands down the best we’ve ever had at this hospital. 

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. 

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 Adjusted

LMM turned two years old (adjusted) yesterday. Her birthday is in May, but since she was due in August, we adjust for her prematurity when assessing her development. 

She’s up to 23 pounds and is pretty much on track for all of her developmental milestones. Her therapists are working on her speech one a week right now, with physical therapy being moved to twice a month. They want her to say more individual words and then we will move to two word phrases.  Physical therapy is focusing on getting her to clear the ground when she jumps, plus balance on going down steps. 
Not much else going on right now, so I’ll keep this short and sweet, just like Little Miss Minion. 🙂

Return to the NICU

This post is more about me than it is about Little Miss Minion. She’s doing very well, but I have volunteering news. 
As I mentioned several posts ago, I am now a member of a NICU Parent support group. The very short story of what we do is provide additional support to families of babies who are currently in the nicu or who are hospitalized and at risk of needing the nicu. We host activities once a week where the parents can make door decorations or photo frames or other little crafty things for their baby’s room. We host dinners where the parents can get free food and talk to the other parents. Last weekend was a Fathers Day event where a photographer was coming to take professional pictures for free. And we also visit moms-to-be who are on the ante partum and labor and delivery floor of the hospital. These would be women who are on hospital bedrest, women who are on meds to stop early labor, women like me who were suspected of having preeclampsia, and any other case where early delivery of the baby is a possibility or the baby has health problems that will likely result in a nicu stay. 

I did something called a Unit Visit last weekend. This is where we go into the nicu itself and visit each and every room to drop off welcome bags and flyers for upcoming events. First, we made up the bags. This consists of putting journals and booklets into bags for each category of nicu stay. There are the short term stays, which are for any baby born after 36 weeks. There are middle stays, which are for babies born from 32 weeks to 35 weeks 6 days, and long term stays, which are any baby born before 32 weeks. It was strange to make up bags for someone who was in the same boat that we were in. The long terms get a preemie book, sponsored by the nicu group, that I remember reading during the first few weeks of our stay. I had thought everyone got one, but they are actual published books and probably cost-prohibitive for everyone to get a copy. 
After we made the bags, we loaded them all onto a cart and wheeled it down to the nicu. Our nicu is divided into wings. One side is for babies who need higher levels of care, and the other is for babies who are “feeder-growers,” or just need to learn to eat and keep growing. Our stay started on the higher care side, since Little Miss Minion was on oxygen support and needed more intensive monitoring. My mentor and I began our Unit Visit on the same side, waiting at the double doors that Mr Minion and I passed through for most of our stay.
We scrubbed up at the sinks, where I remembered frantically checking the clock to see if I had made it in time to help with cares and get to hold her for an hour. Then we started in the first pod and began our visit. We dropped off the bags for new arrivals, plus flyers about upcoming events. 
Walking through the doors to our first pod was surreal. I immediately looked down to the room we had called home for about half of our three month stay, to see if the light above the room was on. If the light was on, there was a nurse in the room. We got up to that room and I couldn’t make myself go in. I looked through the doors and saw that the occupant was a girl, and there was a tiny pink dog sitting on her isolette. Little Miss Minion has an identical one. 
We continued our visit, talking to all the parents who were around. When we got to the feeder grower side, the change was dramatic. There were windows, for one thing. High needs babies are generally micro preemies and light hurts their eyes. 
I went into our last room. It’s a corner room with huge windows that look over a little green area and a parking garage. The family in there was going home the next day. It was so strange to stand in that room, since the last time I was there, I was taking my three month old baby home for the first time. 
I’m so excited to be able to return to the NICU and provide another source of support for the families who have found themselves there. 

This entry was posted on June 21, 2017. 1 Comment

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.