Tag Archive | preemie

Little Miss Minion: Volume 5

Yesterday was Little Miss Minion’s fifth birthday! I can’t believe it has already been five whole years since she was born.

Since we couldn’t have a regular party like we normally would have, the plan was to have a Yes Day and try to meet up with people on Zoom to sing happy birthday. Mr Minion took the day off from work and went out to get donuts for breakfast. After that, she got herself dressed in her Snow White dress and watched tv. She got bored of Snow White after a while and decided to be a pirate princess instead. About an hour later, it was time for Snow White again. Around noon, we had a special visitor—Nurse J from the NICU!

Little Miss Minion had requested a steak dinner, so we happily obliged and Mr Minion grilled some of the best steaks I’ve ever had. After dinner, we fired up the computer and Zoomed with friends and family to wish her a happy birthday and sing before she blew out her candles.

After cake and such a busy day, she was full of energy (and sugar), so we went for a walk in full Snow White regalia, plus a new Frozen baseball hat. I’m sure the neighborhood wasn’t expecting a Royal parade. 🙂

Today was a rude awakening, as Princess Minion realized that it was no longer her birthday and she had to do her normal daily things, like pick up after herself and not have cake for lunch. She’s so deprived.

The Obligatory Coronavirus Post

I have been following this virus since about the third week in January and it looks like it has taken until now for the US government to take it seriously. So…7 weeks. I have a lot of opinions and feeling about this, but I want to focus on what we can all do to help. Since I spent much of Little Miss Minion’s first year of life in a constant state of bleaching everything we owned, I have some relevant experience. RSV isolation and introversion have prepared me for just this situation 😉

As the parent of a former 28 weeker, I take cold and flu season extremely seriously, even though my kiddo has hopefully outgrown her preemie lungs and the problems that go with them, as well as developed a decent immune system. Last time she got sick, she had a runny nose for about 12 hours and then gave it to me, where it lasted six weeks and turned into a double ear infection, a sinus infection, bronchitis, and borderline pneumonia mixed with infection-induced asthma.

I’m sure everyone has heard the non-stop refrain of “wash your hands,” “it’s just the flu,” and “it’s only killing old people.” Here are my two cents, as a NICU mom, as a preemie mom, and as a (hopeful) future nurse:

  1. WASH YOUR HANDS. For real. Viruses need us to take them to the cells they can infect. Take the common cold, for example. You could dunk your hands in a bucket full of rhinovirus and not get sick…UNLESS you brought the virus to your nose or mouth. Scrub your hands, and the detergents in the soap will disrupt the virus capsule and kill it. Hand sanitizer does the same thing to this virus–although not all viruses are killed by it. Norovirus, for example, is not killed by most sanitizer gels.
  2. Take it seriously. While 80% of cases are apparently not a big deal, that means that 20% result in symptoms serious enough to warrant hospitalization. We don’t have the space in our hospitals for that kind of volume. We don’t have the staffing, or the supplies…which brings me to the next point.
  3. Do your part to flatten the curve. The curve is basically the number of people who need medical attention at a given time. The lower that number is, the better shape we will all be in. Slow the spread of illness so that the numbers of severe cases don’t surge. 100 people knocking on your door over the course of a year is far better than all of those people showing up in one day.
  4. Don’t be a carrier. Limit your visiting with more vulnerable people (looking at you, nursing homes, retirement homes, people fighting chronic illness, people with newborns). You could be sick with this virus (or any other virus) and not know it, bringing it in and infecting others who may not be able to fight it off. I can’t tell you how many times I had to tell, explain, and argue with people about why it was so vital that Little Miss Minion not get sick that first year she was home with us. What you think are “allergies” on Monday, so you go visit an older relative, could turn into “just a runny nose” on Tuesday and a full blown cold on Wednesday–and could prove to be pneumonia or worse for your unsuspecting relative.
  5. Don’t let the anxiety rule you. Check in on the news once or twice a day and get on with your day…albeit with a little more soap and a little less face-touching than usual.

 

Wishing everyone health and lots of toilet paper…

 

One Month of SAHM-ing

It’s been a whole month since my last day of work and my first day of being a stay at home mom (SAHM). I think Little Miss Minion has transitioned very well to staying home with me instead of going to daycare. I think I’ve transitioned pretty well too.

Here’s our general schedule:

After Mr Minion leaves for work, we do some “school” activities. This includes some combo of writing letters, tracing her name, and/or math. She’s got a math puzzle that she enjoys, but sometimes I’ll do this throughout the day and ask her how many of X item would she have if I took/added X number of items. She loves that and has started doing the same thing to us. Last night, we were eating dinner and she was asking us how many pieces of fish she would have left if she took some away. We sometimes give her a wrong answer to test her, but she’s getting pretty good.

After “school,” we go downstairs to her playroom and she can play with her kitchen, her castle, or her easel (and the plethora of other toys down there).

By this time, it’s getting close to lunchtime, so we come back upstairs and she cleans up her stuff while I make lunch. After lunch is naptime, and I either clean or study.

After her nap, we sometimes watch a tv show or movie. Sometimes she does a puzzle or colors on her own and I can keep working on school stuff. I’ll start dinner about an hour before Mr Minion should be home.

We’ve kept her off the iPad for about a week now, and I’ve noticed a big change in her ability to entertain herself and her focus. I don’t think she’s old enough yet for any actual educational games on there. I think the iPad might “disappear” this afternoon.

I think we’re going to keep doing swim lessons for her. She absolutely loves them and it’s a good way to keep her socialized. I need to sign her up for the next round. Once it gets warmer out, we’ll start going to the park. My goal is to walk there a couple times a week. It’s about 3 miles round trip and I’ll be bringing the Cadillac stroller (it’s a really nice jogging stroller) so I don’t have worry about her on the busy road and for book storage (the park is on the way to the library). I bought a sunhat for this exact reason, since I’m so pale. It’s similar to a handmaidens tale hat, only blue and there’s a flap of fabric that covers your neck in the back. It reminds me of retro Hollywood.

In other news, I had my first practical exam for Anatomy & Physiology II. In case you are unfamiliar with the structure of my class, it’s one course called A&P II. The class is split into a lecture, which is heavy on PowerPoint and explanation of the physiology part (explaining how the heart works, how the lungs work, what cells make up your blood, etc), and a lab (dissect a heart to see the parts, do your own blood typing to see which antigens you have, look at this model of the lungs to see where the gas exchange occurs). It’s kind of like having two classes, since they each have their own homework and tests, but they count as one grade total. My course grade will be made of 75% from lecture and 25% from lab.

The practical test in lab is set up on a series of stations at each lab table. There will be a model or a diagram or sometimes a dissected organ with questions that we have to answer. This one was very heavy on blood vessels and where your blood would be going depending on which vessel it was in.

Our scores were posted the other day day I got a 96%! So far, so good.

Little Miss Fishy

In an effort to get Little Miss Minion (and me) some social interaction, we decided to sign her up for swimming class. She’s in the preschool group, where they mostly focus on getting the kids to feel comfortable in the water. Her group consists of her and two other kids. The other two are bigger than she is (what else is new?) and more experienced in the water. At one point, she decided to go sit on the stairs and watch, but I talked her into going back over to the group. Her teacher really helped-I think she realized LMM was nervous, not just being stubborn. About five minutes later, she was splashing and picking up diving rings (they were in the kids section, so the water ranged from zero inches deep at the beach ramp walk in to like two feet at the far end). They also did boogie boards, where the kids hold the board and kick while the teacher pulls them around. They practiced floating, which I was sure LMM was going to pass on, but she did it. They also practiced jumping into the water while holding the teacher’s hands. I didn’t think she’d do that either, but I was pleasantly surprised. I was fully expecting her to refuse to go in this time, since the pool is a new place for her and I was over in the parent area. Every time she did something, she’d look over at me and beam–the biggest smiles ever. It was adorable.

While I was getting her dried off and dressed for the ride back home, she asked me if we could come back tomorrow. I think she likes it.

Another Semester Down

The fall semester of 2019 is in the books and I came out with another A! Anatomy and Physiology I was tough, but interesting. The best part is that I think I can reuse my book for the spring (A&P II). I know I can use the other half of my coloring book and flash cards.

The end of this semester also brings me to the halfway point of my return to school. I’ve been taking classes for 2 1/2 years now and I’ve got 2 1/2 left, assuming I get into nursing school this fall. I have the grades and the classes done-I am scheduled to take the HESI in January and then I can apply to nursing school in March.

In other news, Little Miss Minion had her first false alarm shunt incident at the beginning of the month. She’d been complaining of a headache off and on for several weeks, so we talked to her neurosurgeon. He wanted us to come in, since it had been going on for so long. One MRI later, he told us that her scans looked ok and whatever it was wasn’t shunt related. The bright side of this little adventure is that LMM hasn’t complained of a headache since then. The bad news is that this added a new, rather large bill to our “tab” at the hospital. We’re still paying off her surgery from October 2017! If our NICU and hydro journey has taught me nothing else, it’s that medical bills can be paid monthly and financial aid is a lifesaver.

In happier news, it’s almost New Years Eve! That means we get to open The Jar from 2019. At the start of this year, I took an empty mason jar and put it on the kitchen counter, along with a pen and some small slips of paper. The idea was to write down memorable, funny, cool, or happy moments throughout the year and then read them all together on New Year’s Eve. I’ll have to share some once we open the jar.

I hope everyone had a great holiday and I wish you all the best in 2020!

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.

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.

2 Year Shuntiversary

Tomorrow marks two years since Little Miss Minion’s last surgery. This is the longest that we have gone between surgeries (*knock on wood*), and she has changed so much since the last one. Before her last surgery, she still wasn’t really talking and was having some minor gross motor issues. The shunt malfunction that caused her last surgery was a slow breakdown, and I suspect that it was putting pressure on the part of her brain that controls speech. She is a chatterbox now, and enjoys singing to herself and talking to her toys and anyone who will listen.

Another interesting facet of this milestone is that she is old enough now that she will remember any future surgeries that she needs to have. She will notice the shaved patch of hair, and will remember the feeling of having stitches. I hope that she will remember the specific feelings of shunt failure, so that we can compare any headaches to the Shunt Headache. I have been told that Shunt Headaches are subtly different from regular headaches, but how can I explain this to a little kid? How do you explain to the kid that you have to go to the hospital for a lot of tests because they have a headache? What about when you (the non-shunted person) say that you have a headache? If the hydro kid understands the severity of THEIR headaches, how do you explain that YOURS are just inconvenient and don’t require a hospital visit?

While this Shuntiversary reminds me of the last five surgeries, its also a great statistical milestone. Half of all pediatric shunts fail within two years. After that, the failure rate is much lower. This is a great thing for Little Miss Minion and I hope we make it a long time without another brain surgery.

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.

Hydrocephalus Awareness Month

September is Hydrocephalus Awareness Month.

For those who don’t know, my daughter Little Miss Minion was born at 28 weeks. While in the NICU, she developed an infection that led to meningitis and sepsis. As a result of the meningitis, she developed a condition called hydrocephalus.

Several weeks after she was out of the woods from her infection and complications, I remember getting a message from the charge nurse one day when I was at work that said they had done a scan (they did brain scans periodically to make sure she didn’t have a brain bleed, another complication of premature birth) and the scan had revealed enlarged ventricles. Of course, I immediately googled enlarged ventricles and found articles about kids dying in Africa with heads the size of watermelons. Needless to say, I hightailed it to the NICU to find out what was going on with my baby. They told us that a specialist was coming to talk to us about our options. I was convinced that there was a strong chance that LMM would end up like those kids in Africa.

The specialist they sent turned out to be an incredibly talented neurosurgeon from a nearby Children’s Hospital. There aren’t many pediatric neurosurgeons in the country, and there were none in the medical system we used. That’s a story for a different day.

The neurosurgeon explained that LMM had something called hydrocephalus. He told us that, because of the illnesses she had overcome, her brain had become damaged and was no longer draining itself the way it should. He told us about cerebrospinal fluid and how your brain creates this liquid inside areas called ventricles. How something happened inside LMM’s brain and the liquid wasn’t draining. Instead of flowing around her brain and being reabsorbed, it was pooling and building up, putting pressure on her brain.

As if this wasn’t bad enough, he went on to explain that the only way to fix this problem was to surgically implant a device called a shunt. There would be a small tube placed inside one of her ventricles that would drain the extra fluid into a pocket near her stomach, where it would be reabsorbed.

Her first shunt surgery took place when she was about eight weeks old and weighed around 4 pounds. Since then, she’s had four more surgeries.

The only experience I had with hydrocephalus was watching a Disney Channel movie starring Frankie Muniz called Miracle in Lane Two. It’s about a kid who wants to race these Build It Yourself race cars. The kid has spina bifida, and uses a wheelchair to get around. He also has hydrocephalus, and has a shunt malfunction during the plot of the movie. Having this as my baseline knowledge, combined with the terms “brain damage” and “brain surgery” plus the fact that no one could tell us what this diagnosis meant for LMM, we were incredibly worried for her.

Luckily, the brain damage was minimal (as seen on multiple MRIs) and it appears that her brain simply went around those areas to make new connections. We won’t know for sure, so we just have to wait and see if she starts having trouble later.

If you’ve stumbled on this blog by searching hydrocephalus, I want to tell you that you aren’t alone. Also, don’t google it. 🙂