Article I Saw

http://www.npr.org/2017/05/12/527806002/focus-on-infants-during-childbirth-leaves-u-s-moms-in-danger
I feel incredibly lucky to have had the care that I did during my pregnancy. My doctors listened and didn’t waste time when I said something felt “off” and described my symptoms. What if they hadn’t? 

Advertisements

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!

NICU Development Clinic

Yesterday was Little Miss Minion’s third NICU clinic. This is the big appointment where she is evaluated by physical therapists, occupational therapists, speech therapists, a neonatologist, and a NICU nurse. We don’t have her official write up yet, but I have the rough numbers. She did really well!

For those who are unfamiliar, her age is measured by two numbers. One is her chronological age-this is how old she is based on her birthday. The other is her adjusted age-this is how old she is based on her due date. So, by her birthday, she is 22 months old. By her adjusted age, she is only 19 months old. This doesn’t really seem like much, but in terms of early development, it is a big deal. 

Her speech was scored at eighteen months, which is a HUGE improvement. This score technically means that she is no longer considered delayed in speech, which is amazing since she’s only had about a month of speech therapy. They gave us some tips on how to encourage her to talk, but said that she is so close to really talking.

Her cognition was scored right at her chronological age, which is also fantastic. This means that she is scoring three months ahead of her adjusted age, which means that she is pretty much caught up for now in that area. With her early birth, the hydrocephalus, and the brain damage she incurred as a result of either the meningitis or the initial pressures of the hydro, this is really a best case scenario. The doctor told me he had to double check her chart to make sure she was the right kid. 

She’s pretty much on track with her adjusted ago with regard to her fine and gross motor skills. They looked at how she walks, how she holds things, whether she can stack blocks, how she picks things up. 

All in all, I think her average score was twenty or twenty one months, which is great, great news. I’ll post more details once we get the official results in a few weeks. But for now, yay for LMM!

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. 

Back to the NICU

Last night was the first part of orientation for the NICU parent support group. This is group of people who have had children in the NICU. They host dinners twice a month for current nicu families, visit parents on the antpartum wing, visit families in their nicu rooms, and generally try to make the nicu stay a little  better. They do fundraisers, which I have helped with, that allow them to do things like bring a dad to the nicu from overseas before his baby passed away.
Yesterday was the informal informational meeting. There were seven of us, plus the leaders. We talked about what the group does and then there was the “tell your birth story” part. Normally, this is the part where I kind of back away. It’s hard when your story is so far from the ideal and the other stories are what you wanted yours to be. This time, instead of cringing when someone complained about how fat they got and how they were so upset that they had to wait five minutes to hold their baby, I found myself nodding along as someone mentioned the to do list they had written out in the morning and found themselves being admitted to labor and delivery at 34 weeks when their water broke early. We laughed at the crazy stuff we said or did while we were on magnesium. We grinned when we remembered how the nurses called our babies  feisty or cranky or angry because it meant that they were fighting. There were many overlapping similarities, which is something I have not experienced when telling my story. 

After that, we were told that any of us who wanted to could take a walk through the nicu. None of us had been back through the doors since we had been discharged. The atmosphere of camaraderie shifted as we neared the doors. Everyone seemed to pull back inside themselves. We were buzzed in and I stepped into the nicu for the first time since August 3, 2015. Everything was the same. We scrubbed up at the same sinks. We walked down the hall, each of us pausing for a moment as we passed the various wings that our babies began their lives in. I got a glimpse of our first room, at the end of one of the long wings. We walked through the parent lounge, then entered the second half  of the nicu. I stood in front of the door to the room where we learned about hydrocephalus, the room where Little Miss Minion took her first bottle, the room we finally got to leave and bring her with us. 
I hope that I am able to help someone on their NICU journey. 

Moving Up Again!

We got the news today that Little Miss Minion will be moving up another level in classroooms! She will be in this new room until she turns two, and then it will be into the room where they start potty training! Not sure how that will work, since she will be two chronologically, but only 21 months adjusted. The new room will have mats instead of cribs for nap time, and they eat lunch at a little table with toddler sized chairs. 
We also have our bi-annual early intervention meeting coming up on Monday. This will include our case manager, the physical therapist, and the speech therapist. We will be adding speech therapy sometime in February, since LMM seems to need a little extra help with that. She is babbling more, since we started implementing the suggestions from our speech assessment, but no words. 
In non-LMM news, I have decided to volunteer in the NICU grad parent group at the hospital that LMM was born at. This is a group of parent volunteers who have had a baby in the NICU. They host monthly dinners, special events, and other things for the families in the NICU. They have two days of orientation and the first one is next Wednesday. I’m excited to be able to help out others who might be in the same boat we were in. There weren’t any micropreemie parents in the group, and I heard about their four and five pounders born at 34, 35 weeks and wished I knew someone with a preemie closer to LMM’s situation. The world of the NICU is so different from a full term, healthy birth, but within that, the world of a preemie vs micropreemie is vastly different.