Tag Archive | nicu parent

New Semester, New Journeys

Lots of news in this post!

After six years at my place of employment, yesterday was my last day at work. Mr Minion and I decided that my focus should be on my school and spending time with Little Miss Minion before she starts kindergarten in the fall.

I’m excited and a little nervous to start this new phase of life. I’m very type A, so the thought of not having a schedule or consistent daily plan is strange. However, since I am so type A, I have decided to make my own schedule. I’ll be doing some school type activities with LMM so she is ready for school in the fall. I’ll be planning lots of trips to the library and the parks around here, once the weather warms up. And I’m going to have far more time to study.

That brings me to the next bit of news. The spring semester has started! This time, I’m taking Anatomy and Physiology II, which will cover the rest of the organ systems that weren’t covered in the fall semester. My lecture and lab are both on Saturdays, and the class is comprised of me and one other girl. Yes, really. We really have no excuse to not get an A, since we have practically personalized lectures. Today, we talked about blood, blood cells, etc in lecture, and in lab, we looked at the cells under the microscope and did a test where we were able to determine our own blood types based on which antigens and antibodies were present. Next week, we’re covering the heart and doing a heart dissection.

I’ve also made a list (because that’s what I do) of things that we’ve been meaning to do around the house since we moved in. It’s essentially a deep clean of every room and a clear out of everything we don’t use. I’m trying to get everything in order before I (hopefully) start nursing school in the fall.

Another adventure begins!

Happy New Year!

On New Year’s Day last year, we started The Jar. I cut up some paper into little slips and found a pen. The Jar, the slips of paper, and the pen sat on the counter in our kitchen all year. Whenever we remembered to do it, we would write down something memorable that had happened and planned to read all the slips on New Year’s Eve. We went to bed last night at like 10, so we read them this morning. It was pretty cool to see all the things we wrote down throughout the year. Little Miss Minion even snuck one in without us knowing!

Highlights:

Getting cleared for another year from LMM’s neurosurgeon.

Going to a cool Halloween tour at a historical house near us.

I got promoted in the spring. And again in the fall.

Taking LMM to the Home Depot projects.

Planning our cruise to Alaska.

My A in Microbiology. And my A in Anatomy and Physiology I.

Date nights with Mr Minion.

Baking zucchini bread with zucchini from our garden.

Theon Greyjoy Memorial BBQ.

Putting Christmas lights on the house.

2019 was a pretty good year. I have high hopes for 2020.

Now I have to go get The Jar ready for a new year of memories.

Little Miss Minion and the Return to the NICU

As you probably are aware of by now, I volunteer in the NICU as a member of the parent support group. There are several facets of what we do, such as fundraising for activities, visiting moms on hospital bedrest, and hosting events for parents. The part that I usually do is doing a unit visit. I walk through the unit and drop off welcome bags for newly admitted families and talk to parents who are in the unit about how they are coping. This week, I volunteered to cover the weekly dinner we host for the parents. We use a conference room just outside the unit and it’s a nice place to relax, have a good meal, and talk to other parents who are in the same boat. I don’t usually get to do these because of my class schedule, but someone was sick and no one else could cover it. I remember how much Mr Minion and I looked forward to these dinners and I couldn’t let it get cancelled.

The only catch was that I would have to bring Little Miss Minion with me. Mr Minion was working late. I packed up the iPad and some coloring books to keep her busy and we went to the NICU after I picked her up from daycare. Little Miss Minion was very well behaved and so excited to be “helping the babies” at the NICU.

Once we had all gotten plates and were settled, I introduced myself and gave the short story of our NICU journey. It’s a lot different telling a story that involves pediatric brain surgery when the kid in question is sitting next you playing on an iPad. People hear the words “brain surgery” and “brain damage” and they picture a very sick kid. When I introduced Little Miss Minion as the kid in my story, the parents were shocked. Some of them are going through rough journeys of their own and I hope seeing LMM gave them a little hope.

LMM stayed pretty quiet through the dinner and the talking. We all shared our stories and struggles, as well as some of the funny things that happen. I talked about the time I fell sleep while pumping-I put on an episode of Good Eats to keep myself awake during my 2AM pumping session and made it about five minutes in before falling asleep for about an hour–that story always breaks the tension and helps people relax.

I sometimes get that weird feeling that I’m *meant* to do something and I got that feeling before I accepted covering the dinner. As people started to open up and share, one of the dads told his story. His daughter was born at the same weight as LMM and has been there for over 200 days. Much like us, they had a severe infection that resulted in dramatic damage–LMM ended up with meningitis, sepsis, and hydrocephalus. His daughter ended up with a mystery lung ailment that damaged her lungs.

I ended up talking to this dad for about forty minutes after everyone else left. His daughter weighed the same amount at birth as LMM and was a week earlier. He was very affected by seeing another Preemie who survived some pretty dire stuff and couldn’t believe that she’s had five brain surgeries. I think he needed that spark of hope, of seeing the light in the tunnel for his own daughter. He showed me pictures of his daughter and I showed him similar pictures of LMM.

I think I’ll have to start volunteering to cover these dinners more often. It was nice to see the parents in a less tense environment (the bedside is sometimes an awkward place to try to talk about the stress of the NICU). I think LMM had fun too, even though she didn’t get to see the babies.

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.

Hard Core Class

It looks like I’ll be headed back to school a little earlier than I thought. My next class is Anatomy and Physiology I, or A&P I. I got a little pamphlet in the mail this week from my school that offers an online, pass/fail intensive review course for one credit hour it lasts for one week and, according to the stats of people who have taken it and people who haven’t, this class improves your grade by an average of 3/4 a letter grade. Since I’m into my required classes now, I have to get a B or higher, or the class doesn’t count. Since I’m a nerdy perfectionist bookworm, I prefer to get As. Either way, I’m now headed back to class at the end of this month. My last biology course was the very first one I took in my return journey to academics, so that was fall of 2017.

I’ve heard that A&P I and II are the hardest of the pre-nursing classes, and that’s all I have left! A couple weeks ago, an acquaintance who went to nursing school gave me all of her books, so I have tons of reading to do and lots of extra material if I need help. I’m also hoping to be able to arrange more time to study and attend review sessions. In my fall of 2017 class, I got a B. And that was after getting a zero on a test because we were on a cruise. Hoping that bodes well for these two classes. Wish me luck!

4,000 views?!

Just checked my stats and I’ve gotten over 4,000 views since I started this little blog 4 years ago. What originally started as a way to update the many friends and family members who were asking about Little Miss Minion while she was in the NICU has turned into a way to share my views and experiences with prematurity, hydrocephalus, the NICU, and now, going back to school to be a NICU nurse.

Little Miss Minion is so much different than she was a year ago. Someone at work asked me this week at what age does your baby become a little kid? I looked back through my pictures and I think it’s between three and four. At three, LMM still had some baby face going on. Her cheeks were chubby, her movements clunky. Now, she’s got a kid face, never stops moving or talking, and says things like “only for babies.”

Some quick 4 year old facts about LMM:

Favorite thing to do: eat

Fave movie: Greatest Showman

Fave beverage: milk

Fave song: never enough from Greatest Showman

Fave thing to do: go to the park or color

Likes: counting to 10 with me in Spanish and French in the car. Asking “what’s that?” Snacks.

Dislikes: bedtime. Naps. Coffee (I drink coffee in the car and she’s always telling me that coffee is “yucky”). Thunder.

Thanks for reading and hopefully I’ll be able to update more since classes are out for summer!

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!