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. 🙂

Return to the NICU

This post is more about me than it is about Little Miss Minion. She’s doing very well, but I have volunteering news. 
As I mentioned several posts ago, I am now a member of a NICU Parent support group. The very short story of what we do is provide additional support to families of babies who are currently in the nicu or who are hospitalized and at risk of needing the nicu. We host activities once a week where the parents can make door decorations or photo frames or other little crafty things for their baby’s room. We host dinners where the parents can get free food and talk to the other parents. Last weekend was a Fathers Day event where a photographer was coming to take professional pictures for free. And we also visit moms-to-be who are on the ante partum and labor and delivery floor of the hospital. These would be women who are on hospital bedrest, women who are on meds to stop early labor, women like me who were suspected of having preeclampsia, and any other case where early delivery of the baby is a possibility or the baby has health problems that will likely result in a nicu stay. 

I did something called a Unit Visit last weekend. This is where we go into the nicu itself and visit each and every room to drop off welcome bags and flyers for upcoming events. First, we made up the bags. This consists of putting journals and booklets into bags for each category of nicu stay. There are the short term stays, which are for any baby born after 36 weeks. There are middle stays, which are for babies born from 32 weeks to 35 weeks 6 days, and long term stays, which are any baby born before 32 weeks. It was strange to make up bags for someone who was in the same boat that we were in. The long terms get a preemie book, sponsored by the nicu group, that I remember reading during the first few weeks of our stay. I had thought everyone got one, but they are actual published books and probably cost-prohibitive for everyone to get a copy. 
After we made the bags, we loaded them all onto a cart and wheeled it down to the nicu. Our nicu is divided into wings. One side is for babies who need higher levels of care, and the other is for babies who are “feeder-growers,” or just need to learn to eat and keep growing. Our stay started on the higher care side, since Little Miss Minion was on oxygen support and needed more intensive monitoring. My mentor and I began our Unit Visit on the same side, waiting at the double doors that Mr Minion and I passed through for most of our stay.
We scrubbed up at the sinks, where I remembered frantically checking the clock to see if I had made it in time to help with cares and get to hold her for an hour. Then we started in the first pod and began our visit. We dropped off the bags for new arrivals, plus flyers about upcoming events. 
Walking through the doors to our first pod was surreal. I immediately looked down to the room we had called home for about half of our three month stay, to see if the light above the room was on. If the light was on, there was a nurse in the room. We got up to that room and I couldn’t make myself go in. I looked through the doors and saw that the occupant was a girl, and there was a tiny pink dog sitting on her isolette. Little Miss Minion has an identical one. 
We continued our visit, talking to all the parents who were around. When we got to the feeder grower side, the change was dramatic. There were windows, for one thing. High needs babies are generally micro preemies and light hurts their eyes. 
I went into our last room. It’s a corner room with huge windows that look over a little green area and a parking garage. The family in there was going home the next day. It was so strange to stand in that room, since the last time I was there, I was taking my three month old baby home for the first time. 
I’m so excited to be able to return to the NICU and provide another source of support for the families who have found themselves there. 

This entry was posted on June 21, 2017. 1 Comment

Two Years

Two years ago today, I was in a hospital bed on day 2 of hopefully many more on bedrest. I was getting frequent visits from my medical team, consisting of nurses, doctors, specialists, maternal fetal medicine, my OB, and two people from the nicu. My OB was hoping to keep Little Miss Minion and I healthy enough to make it to 32 weeks. The maternal fetal medicine specialist (high risk doctor) gave us two weeks in a best case scenario, which would have put us at 30 weeks. I don’t remember who the nicu people were or what their positions in the unit were, but I remember the feeling of panic as they explained all the things they could do if Little Miss Minion had to come early. I remember words like resuscitation, breathing tube, ventilator, developmental delay, and prognosis. I remember thinking that there were an awful lot of people coming in and out of the room during the time the nicu people were with us. 
When Mr Minion went back to our house to grab more clothes and things, since we weren’t expecting me to be admitted the day before, I remember starting to have trouble reading my book. The words weren’t making sense. I read the same paragraph over and over before finally giving up. I sat in my bed, trying to ignore the uncomfortable straps of the monitoring belt wrapped around my stomach. I watched the numbers on my blood pressure readings slowly climb, trying to will them back down. 150/90, 175/95…my prepregnancy readings were usually around 110/70 or lower. One of the nurses came in to check on me and moved the monitor screen to face away from me. With nothing else to look at, I watched the line of the fetal monitoring contraception move. Every jump indicated that Little Miss Minion was doing well, moving around. After a while, the line seemed to be flattening out. I called the nurse, they did a bunch of stuff to try and get Little Miss Minion moving, and nothing worked. They called in an ultrasound team who did a biophysical profile on her. It’s a half hour ultrasound where they count how many times the baby moves and a couple other things. She didn’t move. I watched her heart beat, the only thing that moved on the screen. 

Soon after that, I suspect an urgent  conference of my medical team commenced and a few minutes later, I was on the phone with Mr Minion, who had gotten to the house and wanted to know if I had thought of anything else I wanted. The doctor came in, so I got off the phone. I remember him telling me that my blood pressure wasn’t responding to the magnesium anymore and that Little Miss Minion needed out. Tonight. As soon as they could prep me.
I called Mr Minion and told him. As I hung up, swarms of people poured into the room to get me ready. I continued to call and text people that they were prepping me for surgery and that the baby was coming. And the rest is history. 
Today, I watched my two year old daughter play with bubbles. She ran up and down the hall of our house, played in her sandbox, and drew on an easel with markers. Two years ago, I watched a blue screen descend in front of my face as a team of doctors and nurses saved my life and saved my daughter’s life. I watched as someone held out a tiny, tiny, tiny baby, her head engulfed in a newborn hat that was almost as big as she was, her skin purple and transparent. Everything I had expected was imploding before my eyes. 
Two years ago, our NICU rollercoaster ride began. It started with a stomach churning drop as our one pound, fourteen ounce preemie was brought into the world twelve weeks early. There was another drop over a cliff as she fought off gbs, sepsis, and meningitis. Things smoothed out as we turned the corner of what would be our halfway point. We shot down another towering drop as we found out about her brain damage and hydrocephalus. The subsequent surgery and recovery were bumpy. But then, we could see the exit. Eighty four days after starting this ride, we got off and started the rest of our lives. There are still bumps, potholes, rainy days, and times when we trip and fall. But the important thing is that we get up, dust ourselves off, and KEEP GOING. 
Happy birthday to my daughter, Little Miss Minion. I’m so happy I get to see you grow up. 

More Mayhem

The last few weeks have been full of Minion Mayhem, but in a good way. Lots of changes and lots to talk about! Where to begin?
A couple weeks ago, we moved into a real house. We had been in a townhouse previously, which was nice enough but didn’t really have a yard or garage and was basically the perfect home for two people, not a family. We had been looking for new houses casually and then got an offer we couldn’t refuse. Mr Minion’s grandfather was moving into a retirement home and gave us a deal for his house. Mr GrandMinion’s house is perfect: there is a garage, which will be nice in the winter since we won’t have to scrape ice and snow off the cars, there is a big front yard and a fenced backyard that Little Miss Minion already loves. We have great neighbors (although we had this at our old house as well). It’s a better school district than what we were in before, and we are looking into some programs they offer for preschoolers. Thank you Mr Grandminion!!!!
Which brings me to my next development: we moved to a neighboring county, which means that Little Miss Minion’s early intervention team has to be changed to people in the new county. It’s looking like her speech therapist will stay the same, but her physical therapist will be someone new and we will have new coordinators. 
And on the note of speech, it’s been a word explosion over here! Objectively, she still isn’t where she “should” be, but she’s getting much closer. At the end of January, she had maybe three true words and several approximations (she would say kee instead of kitty, that sort of thing). Now, she has lots of true words and lots of approximations. Off the top of my head, she says mama, dada, milk, no, table, key, toe, elbow, foot, cat, cow, phone, ball, bubble, outside, poop, get down, light, thank you, and several more. The one word she refuses to say is “please,” but she signs it instead. She knows more words than she will say herself, because if you ask her to bring you (random object), she will grab it and bring it to you. 
Her favorite things to do include playing outside, chasing bubbles, coloring/scribbling/making modern art, and eating. She loves splashing in the bathtub and throwing her clothes into the hamper. She’s happy and cheerful 95% of the time, unless she is tired or hungry. 
She will have her two year old checkup soon, so I’ll have official measurements then, but according to my fancy digital scale, she weighs right around 21-22 pounds. She is growing out of 12 month clothes and into 18 month stuff. 
She also gives the best hugs ever. When I pick her up, she puts her arms around my whole head and squeezes as hard as she can. If I don’t pick her up, she runs at me and doesn’t slow down as she crashes into my legs, arms out to squeeze. It’s adorable. 

May is Preeclampsia Awareness Month!

As frequent readers of this blog will know, my daughter, Little Miss Minion, was born early because I developed severe early onset Preeclampsia. This month is Preeclampsia awareness month, so I will be sharing information about this very important medical condition and how it has affected me and my family. 

Fact: Preeclampsia occurs in 2-8% of all pregnancies.

Fact: preeclampsia and other hypertensive disorders are on of the leading causes of maternal death worldwide. 

And the results are in….

We got the official report back from the NICU follow up developmental clinic. I was pretty optimistic about it when all I had were the preliminary numbers. I read it as soon as it came in the mail and it was even better than I thought. 

Here’s the deal: they do bunch of skills tests with Little Miss Minion and they score her on how well she does. It’s pretty much three hours of playing with her with various toys and equipment. Luckily, she’s a pretty easy going kid, so it usually goes pretty smoothly. 

The stats:

At the time of the evaluation, she was 22 months chronological, 19 months adjusted for prematurity. Since she was born three months early, we subtract those three months from her chronological age to give her time to catch up. So for these tests, we are “expecting” her to score closer to 19 months than to 22 months. 
The scores: 

Receptive communication: this is how well she understands things that other people say. Ex: we ask her to bring us something or to point to a particular object. She scored at 18 months, which falls into the “average” range. 

Expressive communication: this is how well she communicates with others. Ex: pointing to things that she wants, asking for food, toys, etc. she scored at 18 months (average) again. 

Gross motor: how well she moves the large muscles in her body. Ex: running, jumping, etc. She scored 18 months here as well, so average again. 

Fine motor: how well she moves the small muscles in her body. Ex: coloring, picking things up with fingers. She scored at 20 months here, which is still considered average.  

Cognitive: how well she interacts with her environment. Ex: figuring out how to find hidden objects, placing puzzle pieces correctly, etc. She scored at 21 months here, which is considered high. 

All in all, she scored at the Average category. That means that she is performing at the same level as other kids born on her due date. This is huge. The last part of the visit is a meeting with one of the neonatologists from the NICU where they discuss the general results. The doctor had to double check his papers because of her nicu chart. Little Miss Minion has hydrocephalus, which usually impacts some aspect of development, and she also has brain damage from the infection. So he was shocked that she was doing so well. His notes include this surprise as he states that her progresss has been very reassuring, given her history of sepsis, hydro, meningitis, periventricular leukomalacia, and four brain surgeries. 
The upshot of all of this is that she is well on her way to catching up!