Tag Archive | etv

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.


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. 

Two Years Adjusted

LMM turned two years old (adjusted) yesterday. Her birthday is in May, but since she was due in August, we adjust for her prematurity when assessing her development. 

She’s up to 23 pounds and is pretty much on track for all of her developmental milestones. Her therapists are working on her speech one a week right now, with physical therapy being moved to twice a month. They want her to say more individual words and then we will move to two word phrases.  Physical therapy is focusing on getting her to clear the ground when she jumps, plus balance on going down steps. 
Not much else going on right now, so I’ll keep this short and sweet, just like Little Miss Minion. 🙂

Preemie Christmas: Part 4

On the fourth day of Christmas, the NICU gave to me: four brain surgeries, three minute scrubs, two blood transfusions, and a micropreemie in an isolette. 

As long time readers of this blog will know, Little Miss Minion developed hydrocephalus after a bout of sepsis and meningitis. There is no cure for hydrocephalus, only treatments, and those treatments involve brain surgery. When she was about two months old, weighing in at about four pounds, she had her first surgery to place a shunt to drain the excess fluid from her brain. One month later, she had a revision because the shunt had failed. Two weeks after that, she had an ETV procedure to open up the spaces between the ventricles and to create a drain as a backup, and a month after that, she had a second shunt placement. 
Some hydro patients will have only a few surgeries in their lifetime, and some have had hundreds. We are currently 13 months out from her last surgery, and hopefully we will be good for a long time. 

Neurosurgeon Follow Up

We had our semi-monthly follow up with Little Miss Minion’s neurosurgeon a couple of days ago. Every few months, she goes in for an MRI and a follow-up office visit to make sure that her shunts are working and that everything with her ventricles looks good. At our last visit, we were cleared for six months instead of three. At this week’s visit, we were cleared for ONE FULL YEAR!

Everything on her scan looked perfect, and the neurosurgeon even said that this is the best scan she’s ever had. The small area we were watching, near her ETV, is draining properly and has gotten smaller.

So, hopefully, it will be another year until we have to see this particular specialist again. She could, of course, have a malfunction or failure in either of her shunts or the ETV, but barring something like that, she is in good shape!

He also said that the speech delay we are seeing could be due to the PVL (periventriculoleukomalacia–brain damage), or due to just having hydro, or from being a Preemie, or she could just be wired that way. We are still super early in dealing with the speech issues, and she has actually improved a little since we started following the speech therapist’s suggestions. More on that in another post.


Neurosurgeon Follow Up

Every couple of months, Little Miss Minion has a sedated MRI to make sure that her shunts are working well and that any excess cerebrospinal fluid is being drained. She had one today and things are looking good.

She seems to have slight issues with sedation, most likely due to her preemie lungs. Her oxygen levels dropped slightly during the procedure, but they were able to quickly correct the problem. Preemies, especially micro preemies, have underdeveloped lungs at birth and it takes them several years to catch up.

The actual scan was mostly good news. Everything looks good, except an area near her ETV site. It is slowly getting bigger, which could mean several things. It could be that her etv is getting blocked or is scarring over. It could stabilize itself. Or it could get worse. Right now, her neurosurgeon is confident that she’s not having any hydro issues and that the area is safe to observe. We’ve been cleared for 6 more months!

Another saga of preemie problems happened Saturday night. LMM had a low grade fever and threw up twice. Because of her shunt and her prematurity, the nurse line recommended that we bring her in to the er for evaluation. Could it be a shunt infection? A malfunction? Stomach virus? The doctor on call was ok with having us just watch her closely,  since we were going to have an mri today, but we have to be on constant alert for shunt issues.