Showing posts with label survival. Show all posts
Showing posts with label survival. Show all posts

Avoiding NICU head aka Plagiocephaly

Image from Here with tons of info for the medical people.A more severe version go here and for the same thingsI'm saying but in doctor speak, go here.
You maybe asking yourself...  what is NICU head or Plagiocephaly?  It is where the skull gets misshapen due to being in the same position for extended periods of time. It is very common in preemies/long term NICU residents, but is becoming more common in termies as well.

I have been promising this post for awhile and have finally gotten to it!  YEAHHH  to having interwebs again!
Now I have to start off with some basic info....  I am NOT a medical professional, but I am the Mom of a NICU grad.  A long term NICU resident. We were in the NICU for 5.5 months (figured out the other day.. 170+ days).  In our NICU plagiocphaly was EXTREMELY common.  The fact that we managed to leave the NICU with a "normal" skull shape was amazing to many of the medical professionals there, and has inspired some changes in our NICU.

The first signs of NICU head. Lil'C was only a few days old.
So how did we avoid NICU head?  One way is that our nurses rocked and let us know about it.  Another is something I have said before... the greatest asset a NICU child can have is their parent(s)!
A parent gives a unique perspective on the medical interventions.  A parent will notice if their child's head has been in the same spot over 24hrs, which you should point out to your nurse(nicely!).
Even when we were barely allowed to touch him we could still make sure his head got turned side to side daily. We even got center when we started to notice him showing signs of NICU head, which is when we got really serious about finding out how to avoid it.
In the beginning there wasn't much we could do. But we did start letting the nurses know at each shift change about when the last time his head was turned. We made sure his head was turned every 12 hrs (each  shift change). They are supposed to do that anyway but nurses have so much to keep track of, and I would rather they focus on the other things.
The blanket roll method



The blanket roll method with an extra light sheld
One of the other parents told us about Early Intervention and we started asking the medical people about it, but it was early on and we were told that there wasn't anything EI could do for us that early.   We did have one awesome nurse who came up with the blanket roll method.
The blanket roll method requires many receiving blankets.  We used two as sheets to cover the mattress in the isolate. One rolled into a tube on either side another rolled at his feet.  Another blanket was laid over the top of all of these creating a little nest. A cloth diaper and/or scrap of faux fir was placed under his head as a pillow.
The idea was to basically swaddle him/mimic the confinement of the womb as much as we could since he missed those last 3 months in utero.  We baised this idea off of Dr.Sears  (oops... read both books at the same time)  Dr. Karp's "Forth trimester" theory, we figured if it had proven helpful for termies it should really help someone who had missed the whole third trimester.  He stayed a lot calmer after we did, plus it helped avoid NICU head. we still had to make sure his head was turned at least every shift change, but not being on a flat surface helped.
In the beginning we were barely be able to touch him, so the great thing about the blanket roll method is that the nurses were able to do it whenever they had to change his bed anyway.  That way he wasn't disturbed unnecessarily.

Christopher with his EI happies. Froggy pillow under his head and snugglie wrapped around him
Later on we were able to finally get Early Intervention to come in, unlike EI when you are at home they don't actually touch/play with the baby.  They bring HAPPY things!  Bendies, Frog pillows and snugglies.  They generally work the same as the blanket method but are easier to change/customize. 


Kangaroo care is the BEST! This was my favorite day, first day happy holding.
Once he finally got big enough to do kangaroo care, we started that.  Kangaroo care also helped us avoid NICU head by putting him in different positions and in different angles.  Later on when he was in a crib we also used a Boppy as a positioner.  He continued to use the boppy to sleep in at home, which you shouldn't do unless your LO is on O2 and a monitor, it's right on the bobby not to, it just isn't safe otherwise.
Once we finally got home kangroo care morphed into baby wearing, which I highly suggest for all parents whither you had NICU time or not.  Wearing him in a wrap and later a sling allowed him to be nearby, kept him calm and relaxing for me.  I only retired my sling about a month ago when it got uncomfortable with my pregnancy bump.  He was 19mo and 17lbs.  My sister comfortably wears her much heavier (aka healthy normal termie) 1 year old.
The Plagiocehaly is becoming common in termies is due to the "bucket baby" mentality.   A bucket baby is when parents keep their baby in containers such as the baby carrier/car seat, swings, bouncy seats, strollers and cribs. I firmly believe that car seats should stay in the car... my sister isn't as strict as I am about that.   She has no issues but my niece isn't a bucket baby, a true bucket baby is almost always in some bucket device. Babywearing is a great way to keep that from being an issue and is easier on mom and baby.
Now I'm not saying these devices are bad. Christopher loved his swing in the NICU and loved it some at home. The trick is to use these things sparingly.  Ok... getting off my soap box.

Soo how does his head look after 5.5 months in the NICU?    You would never know he spent months in a bed.
No NICU head. The ears are genetic.. both sides, he didn't have a chance. :P

We Finally Have Interwebs!!!

Thanks for sticking with me during the move!  We are settled in and after a month of fighting with a certain internet company...  we have internet!  I should be able to begin posting regually again and I have  few ideas that ya'll will like.  :)   Until then... some much deserved cutness!


Current Updates:  Currently 25weeks with second pregnancy, who is a girl!  Lil'k does not have a heart defect like big brother! She is also on target with her growth.
I hope everyone had a great Thanksgiving (to the fellow Americans) and a great Thursday (for the non-Americans)!

Don't forget to checkout my new Etsy shop!  Nursing necklaces and ring slings!  http://www.etsy.com/shop/StichinFrog

I found something!!!!

I found another Micropreemie mom-blog!  And her MP is older!  :D  It is like peering into the future.  A must-follow for any MP mom!
Here is her Birth Story
She also has a GREAT series on dealing with insensitive comments!
Part 1
Part 2
Part 3
Part 4
Part 5

Here is her MP post list!   I'm just starting to read through them all.  I think it is gonna take awhile :D It just makes me so excited to read that it isn't even funny!  :D

For my new readers....
My Birth Story

And my MP posts...
Pumping Queen- My pumping helper
War of the Passy- My stance on Passies
Pre-Nom- Dealing with pre-nursing babies
Breastfeeding in the NICU- My BFing info
Being Kanga and Roo- All about Rooing
Comfort Babies = Not worth the Effort  - About the term "Comfort babies"
Saving you Sanity - Keeping your sanity as a NICU parent
Swaddiling in a womb with a view - How to swaddle when you can't touch
Make it Personal- the NICU is your nursery
Drs: The Good, The Bad, The Dangerous- What to watch for
NICU Happy Song- A MUST WATCH for any NICU parent :D

Are you a MP parent?  Have any NICU posts you want to share?  Post them in the comments!  :D

C-Section. my opinion.

Emergencies happen.
When you are a mom of a NICU baby you more than likely had a C-section.  It usually comes with the territory.  I posted on my Facebook page after Lil'C was born about how I don't get how anyone would choose to go through that.  The pain, the pills, the separation from your child, etc.   I wanted to have a standard un-medicated delivery.. which is about as far as possible from what I got.   The life of my son was worth it.   I still don't understand why anyone would choose major abdominal surgery instead of a natural process. 
One "friend's" response was "To save your Vah-Jay Jay!"    I didn't respond to her.. the only thought running through my head was... "really???  Your hubby is failing at his job then... " but I of  course did not tell her that.

War of the Thermostat

Preparing for the move to the big boy bed!
The day finally came where Lil'C was big and stable enough to move to a new bed, one without a heating system.   We  continued to do the swaddle blankets but now he got to wear clothes and be held and read to and played with(some, on good days).  It was one happy day, but...

 

Comfort Babies = Not worth the effort.

My dad forwarded me an email from the Glenn Beck show.  It was about how mad he was about something that was said by  Dr. Daphne Austin head of NHS (Britain's government healthcare system). She said  "We are doing more harm than good by resuscitating 23-weekers. I can’t think of very many interventions that have such poor outcomes. For me the big issue is that we’re spending an awful lot of money on treatments that have very marginal benefit. I would prefer to free up that money to spend on providing support to people who have much more lifelong chronic conditions" Mr Beck was upset that Don Berwick, head of U.S. Center for Medicare and Medicaid Services, idolizes her.  He is afraid that US hospitals will start allowing their own preemies to die, for funding reasons.

What Mr. Beck does not realize is that this is already happening in this country.

Being Kanga and Roo

Kangarooing (also sometimes called "skin to skin") is some of my happiest NICU memories.
Rooing
Rooing is where you hold the baby (fantastic right!) on your chest in direct skin contact. The babies have to be a bit stable. Although they stabilize while being rooed, they can tank when being put back in their isolates. Our NICU would not allow us to roo while he was still on the vent or on bad days, he also had be over 2.5 lbs I think.. But I can't remember very well. Weight limits will vary NICU to NICU.
There has been and continues to be a good bit of research going into rooing. There have also been studies showing that micro & standard preemies stabilize faster when the post delivery procedures are done using mom as a table, but she has to lie really still. I hope to never need to put that knowledge to use.

Pumping Queen

I hate it too..
When you have a child in the NICU you can feel helpless. Having to ask permission to even touch your child while some stranger changes their diaper.  You have to stand there while someone pokes and prods them. It is a hard thing for anyone to do.. Especially a raw-nerved hormonal, fresh from L and D mom, who has most likely had a c-section to remove her precious sick child from her body.

Post Surgery

Christopher did really good post surgery.  He went into the cath lab with 40 & 50% O2 in his Blood (you & I usually have 100%) He came out of it with 80-90%, which for him is FANTASTIC!  He is now on High flow and is now allowed to nurse twice a day.  :D  yep yep.. I'm happy.
I'm kinna slacking on my pumping now though... I'm just so crazy tired.
I tried his Smartipants on him yesterday.. and they fit!  I haven't taken pics yet.. He is now 7lbs  :)
He has come a LONG way from the tiny little 1lb 4oz person that he was.
We are using our homemade wrap for all of our nursing.  I got the instructions from the creator of verybaby.com.  LOVE IT! and CRAZY easy.
The Drs are now telling us that we will be able to go home in weeks!  Yep no longer saying MONTHS! or after his first B'day!!

Baby is growing & Major updates

Sorry it took me so long to get back on here.  Christopher was born on March 19. at 1lb 4oz.  He is currently 2lb 4oz.  Christopher's FB group now has 546 members.  It is still really crazy.  Some days are good, some are ok and some are AWFUL! There have been about 3 days that we wouldn't leave because we were afraid he was going to die at any minute.  There have also been somedays that everything is going good and we make plans about what we are going to be doing when we gets big and strong enough to go home.  It really is a big roller coaster.
Here's my adorable son :D















Baby update

Well me & baby are doing ok for now... I have preeclampsia and got up
to 170/100.. We were hospitalized & then on the sonogram they found
out that Christopher has a heart condition and is measuring 4 weeks to
small.. We are now hospitalized in one of the 2 hospitals in the
country that have a chance of saving him.. I swear it feels so
sureal... We have become the big story.. My sister even started a
facebook group called "prayers for christopher" with about 100 members
in 24 hrs... It is so weird
I have been knitting & crocheting to keep myself busy & control my
blood pressure.
I've already made 2 pairs of booties (crocheted) and 2 hats
(knitted). Many thanks to Moon'sHoller for her premie IV cover
pattern. I have made one of those already & plan to make more to share
with christopher's friends. I will post the other patterns later,
along with pics :)