Tag Archive | nicu graduate

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.

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.

Special Education Evaluation

Tomorrow is a big day for Little Miss Minion. Since she turns three in May, she ages out of the program that has been providing her speech and physical therapies. From here, she either graduates from therapies or she transitions into the local school district to receive services through them. Tomorrow is her evaluation. They will test her in cognition, expressive and receptive language, gross motor skills, and fine motor skills. There are a bunch of percents involved and she has to score below some deviation blah blah blah.

I don’t know the math involved but they take all her scores and compare them to where she “should” be. So basically this is where we find out if she’s caught up to her actual age vs her chronological. Since she was three months early, we adjust her age for three years. Theoretically, she should be caught up by her third birthday. Tomorrow, she’ll do the tests that will tell us how caught up she is.

If she doesn’t qualify, we could always pursue private therapies if we wanted her to continue. Or we could be done until she needs future evaluation. It’s a balancing act. Do we cut the cord and see how she compares to her peers in kindergarten? Or do we pay out of our pocket for therapy that the school district has determined she doesn’t need?

Or does she qualify to continue services through kindergarten? We’ll find out soon!

Transitions

Since Little Miss Minion is coming up on her third birthday, she will be aging out of her early intervention program. Once she ages out, she will either qualify for services through our local school district or she will be considered caught up with her peers and will not need additional services.

If she needs services, the district will provide transport to and from her daycare and the school. I think they said she would do half days a couple days a week. She will be tested for speech, gross motor skills, and cognition. Our appointment is in about a month and a half, closer to her birthday.

If she doesn’t qualify, there are other avenues we can go down if we feel like she still needs help.

I guess we will find out. Her appointment is toward the end of March. It will be done at the school building with their therapists.

Preemie Awareness Month

It’s that time again!

I saw this poem today and wanted to share. 

It reminds me of hearing all the stats in the NICU about how small and early LMM was, and how she might have this problem or that one. And then listening to HER, as she proceeded to kick the crap out of the statistics and showed us what strength really means. 

So happy preemie Awareness month. And remember: anything can happen, child. Anything can be. 

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. 

Hydrocephalus Awareness Month!

Happy September! 

September is Hydrocephalus Awareness month. In case you are a new reader, my daughter Little Miss Minion was born 12 weeks early and developed hydro as the result of a series of complications from an infection, sepsis, and meningitis. She had her first surgery at around 2 months old, followed quickly by three more within two months. We are coming up on two years since her last surgery. 
Hydrocephalus is a tricky disease. For the caregiver, it creates a constant see saw of “is it or isn’t it” because it can mimic almost any illness or general toddler behavior. Headaches, nausea, vomiting, crankiness, sleepiness… could be typical toddler behavior or it could be hydro rearing its head. 

The only cure for hydro is brain surgery. That’s not ok.