Tag Archive | preeclampsia

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. 

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. 

Preemie Christmas Part 11

On the 11th day of Christmas, the NICU gave to me: 11 silver linings, 10 specialists a-knocking, 9 dads kangaroo-ing, 8 moms a – pumping, 7 monitors chiming, 6 nurses charting, 5 needle sticks, 4 brain surgeries, 3 minute scrubs, 2 blood transfusions, and a micro preemie in an isolette. 
The thing about the nicu is that it makes you appreciate things you wouldn’t normally think of as a new parent. Things that most parents probably take for granted. Here are my top 11 silver linings. 

11. The fact that there is a special team in the operating room just for your baby. This means they have a fighting chance. 

10. You will congratulate every pregnant person you meet on reaching term (37 weeks).

9. Being in the nicu gives you 24/7 access to medical advice. 

8. Hearing your baby cry. Babies on ventilators cannot cry. 

7. Cares. This is the time of each day when you can interact with your baby. Every three or four hours, the nurses will open the isolette and you can take your baby’s temperature, change the diaper, and see her without the thick plexiglass between you. 

6. Farts. Getting excess air out of the intestines means its easier for your preemie to breathe. 

5. Getting to see (not touch) your baby. After a quick kiss in the operating room, I had to wait several hours to see her again. I’ve heard of other moms who had to stay in the ICU for several days, unable to go to the nicu. 

4. Taking care of your baby. Changing diapers, taking temperatures, arranging the baby back in their Snugli. The nurses will have to show you how to handle all of the equipment.

3. Getting to hold your baby. Sometimes it takes hours, days, weeks, it even months until they are stable enough to be touched. 

2. Getting to leave the hospital as a new mom, even though you can’t bring your baby with you. Preeclampsia/eclampsia is one of the biggest killers of new moms.

1. Getting to take your baby home from the hospital, no matter how long it takes for you to leave. You’ve watched countless other parents take their (giant) newborns home, and now it’s finally your turn. You’re waiting for the nurses to come get you and say they made a mistake. You don’t really believe it until you are home.

A Year of Blogging

I got a message on my blog dashboard saying that it’s been a year since I started the blog. I remember the night I wrote the first entry. I had been out of the hospital for a couple days, since I was in there for almost a week, and I wanted a way to keep family and friends updated on what was going on with Little Miss Minion. Between text messages and phone calls and Facebook messages, Mr Minion and I were fielding at least a dozen conversations each day, and we started to forget who had been told the latest updates. I came up with the idea of the blog, and Mr Minion reluctantly agreed after I agreed no pictures or real names. I had always figured it would be friends and family who would bother reading. 

Then I started to look at my blog stats. As of tonight, I’ve had over 2,500 views, 591 visitors, 92 blog posts, and views from around the world. I’ve got followers I’ve never met, I talk to adults with hydrocephalus and other preemie/nicu parents. I’m able to share our story with others and learn from others’ stories at the same time. 

So to all of my readers, thank you for coming by! I appreciate your comments and support!

My Check Mark

I had lots of things I hoped and expected to be able to do with Little Miss Minion. When I first found out I was pregnant, I started reading about labor and delivery, different pain management options, what to register for, how to arrange the nursery, whether to give pacifiers, whether to give formula or breastfeed, whether to give bottles right away if I would breastfeed, where she would sleep, who would come to the hospital, etc. With the exception of “have a baby,” the only other thing that didn’t get thrown out the window when LMM arrived 12 weeks early was breastfeeding. While I only successfully breastfed her twice, I exclusively pumped to provide her with milk. My goal was to make it to one year, having decided that the many health benefits and low cost (free!) made it the best choice for me. I’m very proud to say that I made it 379 days.

***disclaimer*** I don’t judge moms who can’t or don’t choose to breastfeed. It’s a ton of work and in the end FED IS BEST. This is just my own personal experience. 

Babies born early, like Little Miss Minion, often have to actively develop a sucking reflex. Once they master that, they have to learn to suck, swallow, and breathe at the same time. In the case of LMM, we used a pacifier to help her learn to suck, and then tried to get her to breastfeed (once she was about 34 weeks gestational, or 6 weeks old). Beginning at her birth, I realized that I would need to pump if I wanted to be able to try to breastfeed later, so I pumped every two hours around the clock for weeks, bringing in my milk each morning. They gave it to her via a feeding tube! Since she couldn’t drink enough to sustain her. Since I couldn’t be there all the time, they began to introduce a bottle, and she was pretty successful at that. I still tried to breastfeed, rushing to the NICU when I got off work and struggling with a lactation specialist for about a month. When it became clear that she was on the tail end of her NICU stay and oral feeds were her last real obstacle, I gave up on breastfeeding because I wanted her home.   Being the Type A person that I am, and wanting to be able to see if my supply started going down, I started tracking my pumping sessions and didn’t miss one for the entire time I pumped. I finished my last pumping session yesterday and have some interesting stats for you.

Over the course of my 379 days of pumping, I averaged 7 times a day for about 20 minutes. That’s 16 hours a week being chained to the pump, or almost 884 hours over the course of my pumping career. I pumped a total of 191,876 milliliters (and for the first couple of weeks, LMM’s daily intake hovered between 10 and 20 mls). This equates to 6,488 ounces, or 50 gallons. Buying that much formula would have cost $2,495.43, not including the fortifier she was on. I currently have a stash of about 200 ounces in the deep freezer. 

I also did some research, checking out CDC statistics on breastfeeding/exclusively pumping. Did you know that 79% of full term babies are breastfed in the two weeks after birth? For preemies, only 35% are breastfed by 40 weeks gestational. By one year, only 27% of full term babies are breastfed, compared to less than 6% of preemies. Breastfeeding a preemie is incredibly difficult, not only for the obvious reason that the baby isn’t usually big enough to try oral feeds for a couple weeks. Preemie moms often have trouble with milk production, since C sections are pretty common and the surgery depresses the ability to produce milk. In my case, I was also on blood pressure medicines for about two weeks following the surgery, due to my preeclampsia. The medicines kept me safe, but also tanked my ability to make milk.  I was one of the lucky ones who got to stop taking the medicines, and once they were out of my system, my milk production went up dramatically. 

It’s especially important for preemies to get breastmilk. Donor milk is widely used in neonatal care units because of the immune properties and the fact that NEC (an illness almost exclusive to preemies in which the intestines die) is greatly reduced in babies who receive breastmilk. Preemie moms produce more colostrum for a longer time in order to help boost the health of the baby. The full milk that comes later has more calories, more fat, more iron, and more vitamins than the milk of a full term mom. When LMM got her first blood transfusion, they remarked on how unusual it was that she had gone so long without needing one, and I wonder if it was because I was able to give her milk when so many others were unable to. Other benefits of breastmilk for preemies include lower chances of developing pneumonia, SIDS, allergies, and have also been shown to increase cognitive development and IQ.

The benefits of breast-feeding are not exclusive to the baby. Breast-feeding mothers experience lessened rates of post partum hemorrhage, diabetes, obesity, osteoporosis, and several types of cancer, including uterine, ovarian, and breast cancer. According to a 2011 NICU nurse conference, if 90% of Americans mothers breast-fed until 12 months, the economy would be saved around $13 billion.

In America, mothers who return to work face additional challenges if they choose to breast-feed. Since they won’t be able to bring their child with them to work, they will have to pump. The family medical leave act requires employers to provide pumping space and pumping time, but do a five minute Google search and you will quickly realize but not all pumping situations are the same. Although the rules state otherwise, many mothers are given the option of pumping in the bathroom or in a space that is unsuited for pumping. This time is also not required to be paid time and therefore mothers must choose between money and food for their infant. I was incredibly lucky in that my employer worked with me on providing adequate time and appropriate space to pump. 

The family medical leave act also provides for 12 weeks of unpaid leave. Most mothers that I know would be unable to afford to take 12 weeks of unpaid leave to take care of their child or to recover from a major surgery in the case of a C-section. Knowing that we were in for a long NICU stay, I returned to work after only three weeks of recovering from my emergency C-section and the trauma of LMM’s birth. With all of my extra appointments and extra testing, I had gone through about two weeks of my vacation time before she was even born. Again, I am one of the lucky ones who was able to have any paid time off. 

Exclusively pumping provides its own special challenges. When you’re only pumping, you also have to separately feed the baby. So if you have one baby and you’re pumping, it’s really like feeding two babies. I often refer to it as feeding the pump, because it is like feeding another child. In my case, I could not have done it without the help of my husband. When I was in the hospital on magnesium, and still feeling sick and recovering from my C-section, he woke me up every two hours and got me to pump. Once I was discharged, he would get up with me when I would pump overnight so I didn’t feel so alone. Once LMM came home, we took turns feeding her overnight. It took only a week or so to realize that when it was my turn to feed her, I also had to pump afterward, so my turn was taking about two hours in the middle of the night. Mr. Minion started getting up and feeding the baby while I pumped. If it hadn’t been for him, I probably would’ve quit pumping in October. 

I’m very proud of myself that I managed to pump for over a year. It was a lot of work and a huge time commitment, but I did it. Out of all of the things that I thought would happen or I thought I would do, I’m finally able to cross one off my list. Plus, I personally saved us about $2500, and who wouldn’t be happy about that?