Tag Archive | nicu parent

Feet are Gross

Little Miss Minion has inherited my mosquito problem. Not only do they love to bite us, but our skin welts up afterward. If you google “skeeter syndrome” that’s a fairly accurate portrayal.

So Thursday, after I picked her up from daycare, she started crying about her “skeeto bites” and how her foot hurt. She’s been doing this off and on since the bites started, so we’ve made a ritual of getting home and cleaning up, putting itch cream on, and then having a snack. We got home and I got her into the bathroom and took her socks off. I’ll spare you the details, but suffice it to say that feet are gross, and I knew immediately that we needed to take her to the doctor. We started at a convenient care, and I was expecting maybe some special soap and ointment. Nope. They said it was a deep skin infection and she needed IV antibiotics. Time for the ER.

Luckily, we got to go to our favorite hospital, and not the one we have to go to for shunt problems. This is also the hospital I volunteer at and the one she was born in. We checked in at the ER, and they agreed that she had an infection and needed antibiotics. Normally, they would prescribe oral antibiotics and send us home, but with her history and with her shunts, they didn’t want to risk the infection spreading to her shunts. While they got her IV started and waited for a room to open up, Mr Minion went back home and picked up some stuff for us to stay overnight.

We ended up staying for two nights, but the experience was so much better than at the other hospital. I felt like the nurses and techs were generally not as busy (I think there’s a staffing issue at the other place), and the overall atmosphere is much more positive. Child life visited us and brought her toys, stickers, blocks, etc. She was in a surprisingly good mood for being cooped up and tethered to her IV.

We got out yesterday and her feet look much better. Here’s your health tip of the day: keep your feet clean and don’t scratch at bug bites!!

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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.

End of an Era

A few weeks ago, Little Miss Minion had a special education evaluation through our school district. They did a series of tests to see how she performed in several areas, like speech and gross motor skills. This morning, we got our answer. Little Miss Minion has been disqualified for further services. This means that, according to the school district, she is caught up with her peers on gross motor skills, speech, language, and cognition.

It’s a strange feeling to know that we don’t have to schedule weekly speech therapy and physical therapy anymore. We’ve had someone come to our home to work with LMM ever since she came home from the NICU. So many appointments, tests, clinics, screenings. Part of me is a little in denial. How can my one pound fourteen ounce 28 weeker NOT qualify for additional services? She’s had five brain surgeries! She has actual brain damage (called periventricular leukomalacia). She spent the first 3 months of her life under 24 hour care in the best NICU in our area.

She caught up. That’s how she doesn’t qualify. Not only did she have to consciously learn to breathe on her own, how to suck, swallow, and breathe while taking a bottle, how to regulate her own temperature, how to regulate her heartbeat, how to live in the world three months too soon, but she did all that and more. 36 months after her dramatic entrance, she’s caught up to where she should be. At this rate, who knows how far she can go?

Our next steps are to come back for another evaluation (if we feel like she needs it) in about 7 months and to continue to be utterly impressed by our little rockstar.

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 Support

The formal orientation for the nicu parent group was today. We learned more about what the group does, what our roles can be, and talked about how to be an effective parent advocate. I think I am going to focus on the dinners, bedside visits, and seeing the moms in antepartum. 

When we were in the NICU with Little Miss Minion, we looked forward to the bimonthly dinners that were hosted by the group. It was a good chance to get to talk to other parents, meet graduate parents, see the light at the end of the tunnel, and get free food (hey, eating two or three meals a day in the hospital isn’t cheap). We learned a ton of helpful info at the dinners, such as picking primary nurses, how to blacklist a nurse, the little perks of the parent lounge (stocked fridge with juice, milk, jello, and other snacks), and we got a little break from worry. 
Bedside visits are another facet to the group. On a purely utilitarian level, bedside visits are the best way to distribute materials like flyers, welcome bags, treats, etc to each child’s parents. On a support level, it’s a great way to interface with the parents and let them know that we are there for them. Their child has a team of people, but the parents often get overlooked, understandably so. We can serve as a backup for the parents, to be cheerleaders for them, to make sure they are handling things ok, to help get resources if they need extra help. 
Antepartum visits are the last area that I want to focus on. I was on bedrest for three days in April (I was about 25 weeks) and then for two days right before she was born. Being able to talk to someone who had lived through it and could help navigate the process would have been invaluable. Plus, I was bored out of my mind in April, and talking to anyone would have been a nice break in the monotony. I think talking to the immediately post partum moms would be something I would also like to do. I was so out of it in the days after her birth, it would have been nice to have someone to talk me out of the shock. 
I’m excited to see what this new opportunity holds.