Tag Archive | hellp

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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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. 

Preeclampsia Awareness Month

I was informed by a Facebook post the other day that May is Preeclampsia Awareness month. I find this a very interesting coincedence, as Little Miss Minion was abruptly brought into this world due to Pre-e in May.

I thought I would do a post about preeclampsia and it would be prety much like what I’ve said before. I decided to take a look at Preeclampsia.org and found some very interesting information that I didn’t know about before today.

Did you know that preeclampsia encompasses several different health issues? It covers standard pre-e, plus HELLP syndrome, toxemia, and hypertension of pregnancy. It causes a range of symptoms in the mother and in the baby, most of which will result in death if not treated. It happens in an estimated 5-8% of pregnancies, but is resposible for 20% of premature births in the world. That is 2.6 million, if you wanted a number. It causes about 76,000 maternal deaths and 500,000 infant/fetal deaths worldwide annually. HELLP syndrome, which occurs in 5-12% of preeclampsia sufferers, is particularly dangerous, as it causes damage to kidneys and platelets (the part of your blood that allows it to clot), among other things.

There isn’t much known for sure about the causes of preeclampsia. Most specialists agree that it might be caused by a placental issue, but there isn’t much proof. See my last post for on that theory. The symptoms are much more well-known. High blood pressure, blurred vision, protein in urine, and seizures are pretty standard. Swelling and organ damage are also common. Having preeclampsia doubles mom’s risk for stroke and heart attack. Pre-e preemies are at higher risk for cerebral palsy, learning disorders, and more.

People ask me all the time if we will ever have another baby. The truth: I don’t know. Since I got preeclampsia so early (abnormal bloodwork at 25 weeks, full blown severe pre-e and emergency delivery at 28 weeks), I have a higher chance of getting it again. The average reoccurence rate is 20%, but some studies suggest its between 5-80%, depending on the severity. I would say a second trimester delivery puts me squarely in the severe category.

The good thing about pre-eclampsia, if you look really hard, is that most people are aware of it thanks to pop culture references such as Downton Abbey and Call the Midwife. Proper prenatal care is ESSENTIAL in monitoring preeclampsia. All of my symptoms could be brushed off as typical pregnancy things, until they did bloodwork. My advice to anyone reading this who thinks they might have some of the symptoms-PUSH YOUR DOCTORS!!!. I did, and I think it saved my life and LMM’s. I have every confidence that my doctors would have caught it, but probably not as early as we did.

Enough from me. Happy Intergalactic Star Wars day! May the 4th be with you!

One Year Ago: How Quickly Things Change

One year ago today, I was on day two of a three day hospitalization for “brewing preeclampsia” and possible HELLP syndrome. I was 25 weeks pregnant. According to several very detailed ultrasounds, LMM weighed about 15 ounces. I received my first round of steroid shots, to speed her lung development in case they had to deliver her that day. 

One year ago yesterday started off pretty normally. I had done a round of bloodwork to check my thyroid levels again and to see if there was anything going on with some swelling, headaches, and slightly higher (for me) blood pressure readings of around 120/80 (normally was around 105/70). Around 2 pm, I got a call at work from my OB office. I snuck off to the hall to listen to the message, knowing it was probably the results of my bloodwork. When I heard my doctor’s voice on the message, I started swearing. My doctor never personally called me. Her nurse practitioner had always called. “Please give me a call about your blood test results.” I went back to my desk, since I was the only one there that day, and didn’t want the department to be unmanned. I called the office and got the nurse practitioner. She put me on hold while she grabbed my file and then came back on the line. “Ok, Mrs Minion, the doctor wants you to head to the hospital. Your bloodwork came back with some abnormal levels. You’ll come in the main entrance and then to the maternity welcome center. We’ve sent your file over already, so they will be waiting for you.” 

In shock, I went to my boss and told him that my doctor told me to go to the hospital. I grabbed my stuff and headed to the parking garage. I called Mr Minion as I walked, telling him that I was headed to the hospital. I made it to the maternity center and told them I was here. About five minutes later, Mr Minion walked in the door. The drive should have taken him about fifteen more minutes. 

Over the course of my hospital stay, I learned that my platelet levels, the part of your blood that makes clotting possible, were very low. My kidney levels and Uric acid levels were wrong too. My hemoglobin levels were also wrong. I had basically everything that makes up HELLP without the severity. My new high risk team also thought that I would probably end up with preeclampsia, which is high blood pressure and organ stress. They didn’t know if I would ever get officially diagnosed with it, since you have to meet several diagnostic criteria and I wasn’t technically meeting any of them. They didn’t know when it would happen, if it ever did. The hope was to get LMM and I to 37 weeks, the minimum threshold for full term. I would have weekly blood draws, weekly protein tests, and a high risk maternal fetal medicine team. I was under orders to take it easy, and I was able to keep working only because I have a desk job. 

I had no idea that my daughter would be born exactly three weeks after I was discharged. I had no idea that the following 84 days would be spent in a small room in the nicu, watching her learn to breathe, eat, struggle through infection, sepsis, meningitis, and hydrocephalus, watching her be wheeled away for brain surgery. I had no idea I would have to wait an entire day to hold my child, that I would have to wait for permission to hold her again. I didn’t know how enraged I would be to hear a pregnant woman bemoan her aching back and wish for an early baby. I had no idea of the level of jealousy I would feel with other people and their textbook pregnancies. 

I had no idea that I would be hooked up to an IV of magnesium, a substance that would keep me from having seizures due to sky high blood pressure, telling the nurses and the doctors that I would be fine, that we needed to wait because LMM wasn’t ready. I didn’t know that I would be waking up every three hours around the clock to pump instead of breastfeed. I didn’t know she would have four brain surgeries before the age of six months. I didnt know that any sound of beeping would trigger an adrenaline rush to get to my daughter’s side and stop the apnea or bradycardia episode in progress.

Without darkness, there can be no light.