Tag Archive | preeclampsia

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.”

 

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May is an interesting month…

I was skimming through social media this afternoon and saw several interesting tidbits that I thought I would pass along.

Today is National Nurses’ Day and the first day of Nurses’ Week (at least in the US). I would like to send a huge THANK YOU to Little Miss Minion’s nurses in the NICU, as well as the nurses who have taken care of her during her various hospital stays and doctor’s visits. I also want to say thank you to the nurses who took care of me when I was inpatient before her rather early arrival. A particularly large thank you goes to L&D Nurse J, who was the nurse I told about LMM’s slowing movements two hours before she was delivered. Thank you for listening to me, for checking out the monitor, and for IMMEDIATELY calling the ultrasound techs who got to the room so fast I think they may have already been on their way up to me. Thank you to NICU Nurse J, one of our primary nurses, who taught Mr Minion and I how to give LMM a bottle for the first time, how to wrap her like a burrito to keep her warm once she got out of her isolette (without tangling her multitude of cords), and invited us to volunteer with the March of Dimes as family advocates in our stats. Thank you to overnight NICU Nurse S, who helped us bathe LMM without dropping her body temperature. This tiny task made me feel more like a parent more than I would have thought possible. Thank you to daytime NICU Nurse S, who was also one of our primary nurses and walked us out of the hospital on our 84th day.

The month of May is also Preeclampsia Awareness Month. Preeclampsia is the reason I had to have the emergency C section that saved my life and saved LMM. Without immediate delivery, my blood pressure would have continued to climb, causing strokes or seizures, and my kidneys would have continued to shut down as a result of narrowed blood vessels. The HELLP syndrome I developed as a side effect of the preeclampsia would have continued to destroy my platelets, causing a hemorrhage, and would have continued to damage my liver. Basically, I was lucky. Many women aren’t so lucky and many women DO die from preeclampsia and HELLP syndrome. About 60,000 women die annually worldwide as a result of this condition. There is no cure. The only way to stop it from progressing is delivery of the baby, and even then, the mother can still develop post-delivery preeclampsia for like six weeks after delivery.I guess I find it interesting that these two awareness events take place in the month I had Little Miss Minion. Fate? Maybe. Divine intervention? Probably. I’ll take it!

Three Years of Blogging

Three years ago, I started this blog as a way to update friends and family about what was going on with Little Miss Minion. Our cell phones were blowing up with messages and phone calls, all wanting to know the latest on our little family. It was nice that so many people wanted to know how we were doing, but cell phones are a NICU nightmare for germs. I created this blog as a way to update everyone at the same time, reducing our need to touch our phones while in the NICU, and cutting out the time it took to answer everyone individually. This let us have more time to spend together, sitting on the couch in our room in the NICU, staring at the tiny little human growing in the incubator.

To everyone who reads this, thanks for being a part of our NICU journey.

Happy 3rd Birthday!

Little Miss Minion turned three about ten minutes ago. It’s hard to believe that we started this journey three years ago with a one pound fourteen ounce 28 weeker and now we’ve got a little kid who just graduated from all of her therapies and loves to give hugs and eat cheese its.

We are so lucky.

Advocacy Day

As I mentioned before, our Minion family was invited to join other families in a trek to the state capital for the March of Dimes Advocacy Day. It was the first Minion Family Roadtrip!

We drove up the night before Advocacy Day and stayed in a hotel (graciously supplied by the March of Dimes). Little Miss Minion serenaded us for about half of the drive with a mashup of “twinkle twinkle little star” and the alphabet. We had hoped that she would fall asleep, but that only happened in the last thirty minutes of the drive.

We arrived at the hotel and checked in, brought up our luggage, and crashed. Little Miss Minion does not sleep in our bed at home, so she was very excited that Mr Minion and I were joining her. The catch is that she likes to sleep on her back, starfish style. And she’s never used a pillow. So that was an interesting several hours.

We woke up, got cleaned up, and sat down for breakfast (which was surprisingly good), and then made the short trip into the capital. After parking and walking to the building, we found ourselves inside the huge building and wandered until we found the March of Dimes area. There is large open area where different lobby groups can reserve space with tables and chairs for their members to wait between meeting their representatives. It’s kind of like home base. We met up with the group there and read over the materials we had been given. For each meeting we had scheduled, we had a folder with the information about the two bills we were lobbying for, information about how the bills could help people, and our personal stories. Several weeks earlier, we had been given a template to fill out that would share our own story with the NICU. We were also given a folder that contained copies of everything for us, including our schedule.

Our first meeting went well, and our personal story was well received. Having told the story WITH Little Miss Minion present and WITHOUT, it’s much easier for the audience to tell it with her there. People don’t expect good things when you start off with “28 weeks, and weighed 1 pound 14 ounces” and you can’t really blame them.

Our other meetings were good, and we got to sit in on a session of the House. The March of Dimes presented one of the representatives with an award for her work on the house bill. We were provided with a great catered lunch from Panera in between our meetings, and there had been water and soft drinks in a large cooler available as well.

It was so nice to see our primary nurse J again. I see her every once in a while when I run into her in the NICU but she hadn’t seen LMM since her 1st birthday. And Little Miss Minion was so well behaved the whole time. She got a little fussy towards the end of the day, but that was it. She slept most of the way home, and we were all in bed by around 7:30 that night. It was a long day, but a fun and rewarding one. I hope we can do it again next year!

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.