Tag Archive | preeclampsia

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.”

 

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!