Tag Archive | hellp

Prematurity Awareness Day 2019

Wear your purple today in honor of Prematurity Awareness Day!

There are so many lasting effects of premature birth that it’s hard to list them all. Not only do you have the ones that make themselves known around birth (low birth weight, breathing assistance, etc), you have all the things that could happen in the NICU (blood transfusions, surgeries, infections, caffeine, TPN, PICC lines, specialists, etc). Then you can have all the things that happen after the NICU, like early intervention therapies, more specialists, more surgeries, developmental delays, etc. Even in the best hospitals with all the available treatment, sometimes that isn’t enough to save the baby. Some are simply too early, too small, or too sick.

The other unseen effect is what happens to the parents. Seeing your child hooked up to wires, unable to breathe on their own, fighting infections, needing surgery… these things take a toll. The rate of post partum depression is up to 70% in NICU moms, compared to just 16% in the general population (Graham’s Foundation study). PTSD is also a concern, with 53% of mothers and 35% of fathers developing it (Pediatrics Journal).

The final effect of prematurity is the What If syndrome, as I like to call it. It starts out with self-blame at the early arrival of the baby: what if I hadn’t had that cup of coffee each day? I know it was within the limits of caffeine, but what if I hadn’t? What if I had eaten more fruit and vegetables? What If syndrome then morphs into a trip through all the horrible things that can happen in the NICU: What If the baby catches a cold? What if the baby gets an infection? What if the baby has more desats and bradys? If the baby comes home, What If syndrome likes to go nuts: What If the baby stops breathing at night and we don’t know because there’s no monitors? What if someone comes over and they are sick and then the baby gets sick? What if the baby isn’t catching up to their milestones? What if they aren’t eating enough? What if we end up back in the hospital?

The final question that I’ve seen other Preemie moms deal with is: What If it happens again? The cause of many premature births isn’t known. Sure, I had preeclampsia and HELLP syndrome and those are probably listed somewhere as the cause of delivery. But how did I end up with that? Could I have done something to prevent it? No one knows. Aspirin looks to be a big help in delaying preeclampsia, but it doesn’t always work. The same goes for things like incompetent cervix, premature labor, early water breaking. No one knows why these things happen. There are some treatments to help, but nothing is guaranteed.

Prematurity can happen to anyone. I’m so glad that we had such a good outcome (even with our 3 months in the NICU and the hydrocephalus diagnosis and surgeries). There are many people who aren’t as lucky. And I’m glad that I’m working toward being able to care for those babies (and parents) who find themselves in the world of the NICU.

NICU Awareness Month

As I mentioned in my last post, September is Hydrocephalus Awareness Month, but it is also NICU Awareness Month! Here is the short story of how Little Miss Minion ended up in the NICU.

Little Miss Minion was born at 28 weeks because I had developed something called preeclampsia. Basically, this is high blood pressure that has negative effects on blood vessels that carry nutrients to the baby and to the mother’s organs, particularly the kidneys. When my kidneys began releasing large amounts of protein (measured by weekly urinalysis), my doctor decided I needed to be on bedrest. Two days into bedrest, I had a follow-up appointment with more urinalysis and bloodwork to see how things were progressing. When everything was analyzed, they told me to go the hospital for confirmation and to expect to go back home for bedrest.

While doing more bloodwork in the hospital, it was determined that I had also developed something called HELLP Syndrome, a complication of preeclampsia. In addition to (or because of) the high blood pressure and kidney damage, my platelet count was lowering, my red blood cells were being broken down, and my liver was being damaged. All of these things together made for a very bad combination. Toxins were building up as my kidneys and liver were damaged and unable to filter them out. My red blood cells were damaged, and my platelets were being destroyed. Platelets are a very important component of your blood. When you have a cut or any bleeding, they flock to the area and cause a clot, which stops the bleeding. Low platelets means that the chances of hemorrhage increase. Not a good thing when the only way to stop your symptoms is an emergency C section.

The scariest part of this whole thing is that I FELT PHYSICALLY FINE. I had headaches, but I always got headaches. My feet were puffy, but I was pregnant and that is apparently common. I am still so incredibly thankful that my OB listened to me the first time around (we had a mini version of this in April, when I was 25 weeks) when I said something felt off, but I couldn’t put my finger on it. My blood pressure was higher than normal for me, but still within normal limits. My bloodwork came back off, but not off enough to conclusively prove anything. My feet were puffy, but only after I walked around at work.

I had my first visit to the NICU a few hours after LMM was born. I had been too sick from the magnesium (used to keep my skyrocketing blood pressure from causing a seizure) to go down and see it. I can’t remember at the moment if Mr Minion was able to go down and see it beforehand. I know they sent a couple of the neonatologists up to talk to us at some point before she was born. We had been aiming for 34 weeks, then 32 weeks, and then LMM stopped moving on the monitors I was strapped to 24 hours a day. An hour after she failed the non-stress test, she was here.

My first memories of the NICU are hazy because of the magnesium. I don’t remember getting to her room, but I remember being in the room and looking at the incubator and thinking, that is not a baby. That can’t be a baby. So many wires and tubes and nurses…so tiny. There is a picture of me in the hospital bed in her room looking absolutely trashed and I can see the state of shock I’m in.

As I began to physically heal, the NICU became less of the shadowy and terrifying place I had seen that first night, and became like home. We had a routine after I went back to work 2 weeks later: we would arrive at the NICU at 6am. I would pump and we would get the overnight report from the nurse. I would leave for work at 6:30 and Mr Minion would stay until around 8, maybe getting to help with her diaper change or even holding her. I would get off work at noon (my work allowed me to change my hours so I didn’t burn all my time off before she came home) and drive to the hospital, change my clothes, pump, and hopefully get to hold her for an hour or two. Then I would pump again and try to take a nap. Mr Minion would arrive and we would have dinner in the cafeteria, then go back to the room for her evening cares (diaper change, temp, heel stick for sugars). One of us would hold her for another hour, I would pump again, and then we would head out after the night shift switch.

Repeat for 84 days.

When she finally got out, I was sure I would never go back. Then, I wanted to go back to help with a fundraiser for the parent group. Then, I joined the parent group as a full volunteer and went back into the Unit itself to talk with parents about their NICU journeys. Now, I’m going back to school to earn a nursing degree so I can come back to the NICU as a nurse.

It’s funny how thing work out sometimes.

Little Miss Minion’s Due Date

Today was Little Miss Minion’s due date, back in 2015. We stopped using this date to adjust for her prematurity once she turned three, but I still have a wistful feeling whenever this date rolls around. What would she be like if she wasn’t born so early? Would she still have gotten sick in the NICU? Would a slightly more advanced immune system have fought off the infection and kept her from developing hydrocephalus? Would she have a little brother or sister by now, if my pregnancy with her hadn’t been so complicated?

May 14 is Little Miss Minion’s day. It is the day we celebrate her birth, however early and terrifying it may have been. August 3 is another happy day—her Gotcha Day—the day we brought her home.

August 6 is my personal day of remembrance and mourning. Of mourning the loss of what my pregnancy was “supposed” to be. Of scrapping Birth Plans A-Z in favor of Birth Plan-Nobody Dies. Of spending my first nights as a mother in a hospital room, dazed from the magnesium that was keeping me from having strokes and/or seizures, with my baby on a different floor of the hospital. I mourn the day I was discharged from the hospital without my baby, who was too small to come home yet. I mourn the nights I spent that summer when she was in the NICU, pumping every three hours and falling asleep with the machine on as I watched episodes of Good Eats to try to stay awake.

But I remember, too. I remember how tightly those unbelievably tiny fingers and hands gripped my thumb. She would wrap her entire arm around my thumb and just grip it when I would kangaroo her (kangarooing is skin-to-skin contact between parent and child). I remember how she was forever pulling her nasal cannula out of her nose and the two tubes would come down by her mouth and make her look like a tiny vampire. I remember how hard she fought the infection, sepsis, and meningitis. I remember standing by her crib all night after she came out of surgery for her first shunt placement, determined that if she woke up from the anesthesia that night, she wouldn’t feel alone. I remember the feeling of elation as we brought her home. I remember being so proud of how hard she worked in physical therapy and speech therapy.

 

And I remember how, when I put her to bed, she grabs me for a huge hug and says “I love you, Mama.”

 

March of Dimes

I have some exciting news! One of Little Miss Minion’s primary nurses has stayed in contact with us since we left the NICU. We have been invited to present our story to our state senators and representatives in March! We will be part of an Advocacy Day for the March of Dimes, which is an organization that does tons of research on prematurity and birth defects.

This visit will entail meetings with our local representatives and telling them about our experience in the NICU. I’m assuming the purpose is to help keep funding or grants or something. More details on that later. I’ll be working on a short explanation of my pregnancy complications and of LMM’s NICU stay and complications.

I don’t have a ton of info yet, but I’m so excited (and nervous) to be able to help this organization.

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. 

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!