Surviving the NICU: with your marriage

NICU parents face so many struggles.  Fear, hurt, understanding, knowledge, patience and so much more.

One area that is frequently forgotten.. Is marrage.  So much time and energy is placed on dealing with the medical and the sick baby that the relationship between mom and dad can get forgotten or placed on the back burner for far to long.  NICU parents have a very high divorce rate, most places state 97% (some say as low as 90, but I can't find any studies).  Also aparently the longer you are in the NICU.. The higher the risk, we were in 175 days. 

So what can you do about it?  The first thing is to be aware.  You have to know a struggle is there to be able to battle it. 

We have watched many of our NICU friends separate after spending time in the NICU. We are currently 5 years out from our NICU time but still have the "special needs child" risk which is also high (although it may be a myth!). 

Our marrage and ourselves are far from perfect, and we both admit that. 

A few things you can do-

Avoid blame!:

This is very important.  Daddy C could blame me for the heart condition (since I was on clomid and heart conditions run in my family).  We could blame each other for the Pre-Eclampsia since that is in both our families.  We could nit-pick back and forth about what we could have done diffrently to change the outcome, but none of this is helpful. It mearly creates strife and division.  This also includes trying not to blame yourself, if there is nothing you can do about it now, then it is not helpful.  Use your time and energy to focus on what you CAN do, such as googling what you can do to improve long term outcomes and/or pumping. 

Teamwork:

Just like in every marrage you should develop a team mentality.  The tasks you divide up will be NICU specific issues, but need to be geared toward each of your strengths.   I like to have information so I did (and still do!) most of the communicating with the doctors and nurses.  I keep track of meds, history and goals.  My husband is better at dealing with emotionally charged situations or where our son has to do something that will be painful.  For example I would step out of the NICU during eye exams and my husband would stay with him.  He is also the one who usually holds him during IVs.  We even worked as a team when it came to pumping, in the early days he would deliver the tiny syringes of milk.  Later he would take the night pumpings to the fridge and carry the frozen milk to the NICU when they needed a fresh supply.   He also took on the job of cleaning and sanitizing the pump.

Take turns:

When you are having baby time, take turns. We would swap turns at each care time, I would get the first turn of the day and he usually got the last (I need more sleep). When it came time to do kangaroo care, we swapped then too. When we had only one per day, I got it because I needed it to help me keep/build my supply (except for Father's Day, which was my gift), but when we went up to two, he got the second.  Then I the third and so on.

Date night: 

About once a month or so, we would miss one care (so hard!) to go on a date night.  Sometimes it was just a meal, but Daddy C is a movie geek, so going to a movie meant a lot for him.  Whatever works for ya'll.  Our first date night was a few weeks in when our church youth group went to a concert in the city that our NICU was in and took us along.  It was their way of getting us out of the NICU for a few hours. Lil'C was having a good day, so we went. I still remember it fondly and am glad we went. 

Strengthen the foundation: 

A weak foundation is hard on any marriage, but being in a highly stressful situation such as the NICU can really exasperate any weak areas.  We have done a few "marriage courses" over the years, even before we were pregnant.   We both hold firmly to the idea that there is always room for improvement any ANY marriage and that NO marriage is perfect.   No "happily ever after" princess here., "I Do" is a starting gun not a finish line. 

A few we have liked: 

Captivating and Wild at Heart (not marriage per say but helps you understand your own weaknesses, highly suggest it first)

The five love languages 

Prepare to last (We did this in a church group)

Fireproof (in process) 

I have also read blogs (Pinterest!) and  books when we run into an issue.

I like the book The Surrendered Wife,  even though I hate the title and don't agree completely but I think she makes some valid points.  

I love finding free kindle books (even if I don't fully agree with the author, I usually find a new perspective.) They change frequently, so search.

Fix the finances:

The #1 cause of divorce is money trouble.. Or fighting about finances.  And NICU time is EXPENSIVE, and with therapies, Doctor appointments and being medically fragile.. It doesn't get much better.  So I highly suggest Dave Ramesy.  We had already read some of his books and we also were gifted his financial peace class, and that seriously brought some peace.  We have WAY less arguments in our home now and we are on Baby Step 2, we have a way to go but we are getting there! 

I hope these tips help strengthen your marriage and your marriage defies the odds just like your little one!

Do you have any tips for me? 

DIY O2 Tank transporter

It is a fairly simple thing to make.  Hubby tweaked the design a few times, but now Lil'c barely uses O2 and we don't use it any more, which is why it is inside.   We have used it in both a hatchback and a van.  

The Supplies: 

PVC pipe (slightly smaller than the tanks so it will grip)

3/4" plywood (measure from the floor to the top of the back of the backseat x width of the back of the backseat) 

Extra strip of 3/4" plywood 4"x needed length (only under small bottles) 

Tie-down straps (auto supplies) 

Spray paint 

The process:

Cut large plywood to size.  Notice the notches in the bottom to allow the tie-down straps to wrap around the back of the seat and hold it in place. 

Cut PVC pipe to length and then make ONE additional cut down the length which will allow the pipe to expand and grip the tanks. 

Screw PVC to the board making sure the vertical cut is facing out.  

Screw the strip of plywood under the PVC for the smaller tanks.  This will give them something to rest on, otherwise they will slide right through.   The large tanks will simply sit on the floor.  

Spray paint for appearance.   We went with black since we had it on hand, or you could try and match your vehicle's interior. 

Fairly simple process :). 

This allowed us to make use of our full trunk space while easily being able to trade out tanks.  You could easily tell the empty from the full by the white caps.  We kept the small tank in use in the transport bag with its valve on and a valve on whichever large tank was currently in use. This allowed us to carry 8 small tanks (notice only 7 slots) and 2 large tanks wherever we needed to go, including 2 4-day trips to see family 14 hours away!  On those trips we also brought along the concentrator and used it as much as possible to save our tanks.  

Although I will tell you, driving around with that many tanks in the back can make you nervous of other people's driving, but it is certainly better than them rolling around if you are carrying them anyway! 

How many tanks have you had in your car at one time? 

Pneumonia.. again.

I'm such a slacker...
I'm having camera issues, plus we are moving.. again, plus we had a nice 5 day hospital stay, days after reading this.. I'm so behind.

Asleep in the ER

So Lil'K got a runny nose, that came along with a lovely fever.  As soon as she started showing symptoms.. we made sure our Emergency bags were prepped and ready to go, we knew it was only a matter of time until Lil'C would get it too.
Two days later he started showing symptoms.  The day after that she had a nice fever and he went into the 100s (at night) so we called the Ped and had them seen (Monday).  They were both rather chipper at the appointment and Lil'C's lungs were pretty clear with mild "crackling" (yes, that is a medical term) in his upper lungs.  By Wednesday Lil'C's fever had spiked to 103.8 (again at night) and his runny nose had turned green, Lil'K was almost finished with a very slight clear runny nose.  Her's had actually never changed colors.  By noon we were packing up and heading to the hospital, which took longer than expected since we were out of practice.

What's a bored little girl to do?  

 

Drive an IV pole like a car, that's what.

We had cranked his O2 up to 1.5L from .5 and when we got there they had to crank him up more.  For a few days he was actually at 5L!  He ended up needing steroids since it was a viral pneumonia.  They also put him on antibiotics, even though they don't do anything for viral, to protect him from a secondary infection while his immune system was weak.  

3G Geek. IPad Boss

Thankfully this time it was only lungs and no heart issue.
He had to have nebulizer treatment and something we had never had before... IPPB.  If you have no clue what that is, like myself...  It is kind of like a nebulizer except it oscillates.  It sounds like a train and has to be held on tightly.  Hubby had to hold down Lil'C for each treatment every 4 hours.  We all hated it... but it worked.  It broke up the gunk in his lungs and he went on the mend.
So we now have a ton of meds, but he is feeling much better and getting back to his old self.  His toes, fingers and lips have stopped turning purple when he pulls off his O2 for to long.  He is also back to only wearing it when he sleeps, which is nice. 
We were also in the middle of potty training when all this hit and it kinna triggered a regression.  We are slowly getting back to where we were.  Speaking of which... does anyone have any hints for teaching a toddler to pull his own pants up and down when he has poor movement on one side??  

(Days later)
Seriously slacking on the blog..
Lil'C is back to his normal O2 and meds.  Although I added a probiotic (this one) once he got off the Antibiotic, thanks to a suggestion from Kate.. and I think he has really been needing one.  I think he has been on so many really strong Antibiotics throughout his life that it has pretty much destroyed his gut flora. 
Since he started solids he has had trouble gaining weight.   I'm thinking all of the antibiotics are part of the issue.  Breastmilk naturally contains probiotics and whenever I would get serious about giving him yogurt he would gain some weight.. now with this probiotic he is obviously putting on weight and growing.  He has chubby cheeks again, has finally outgrown all his 18mo (yes my 3yo has been wearing 18mo) clothes and is suddenly able to reach things he wasn't able to when we got back.  It is really kinna crazy.  I need to look at his discharge papers to see if  I can find a height and weight to compare it too.

See the cheeks? He is saying "vroom"

So... 2 Questions for all ya'll....  Any help on the potty training with a weak side?   Have you seen a sudden health change after starting probiotics in someone you know (or yourself)? 

The Emergency Hospital Bag

Back when DH and I were dating he introduced me to the concept of the emergency bag. He always kept one back in case of a sudden trip, mostly due to his mother's frequent illnesses.
Today we keep them prepped for lil'c's frequent and sudden stays.
Funny thing is that when Li'k was born... His bag wasn't ready :P

One of those days

Today is just one of those days, one of those "life isn't fair" days. I'm frustrated, so that just makes it worse.
I have been watching my niece, who is 9mo (6G) younger than Lil'c, during the day. The comparison just makes his issues all that more obvious. At his age, he should be talking, verbally. We use sign to communicate since the brain cysts damaged his ability to express verbal language and has a rather large vocabulary. About 65 signs. She signs some because he does, but she does have words. She actually prefers sign since it is easier at her age. He used to have words.. He used to say "mama", "ah-ma" (grandma), "Ning-ning" (daddy, he made that noise when Lil'c would beep his nose) and a few more that I have on the list on the fridge that I can't even look at anymore. He lost them all when the scaring hardened around the cyst.
Most of his signs are so similar, because of his lack of dexterity due to the cysts, that he is hard to understand. BALL, YEAH, BOOK, CRACKER, COOKIE, ALLIGATOR, BEAR, and blanket all look like MORE. Hers are perfectly articulated, she even gives a "well, duh" expression when she does sign, which is cute.
He falls frequently while she climbs EVERYTHING. His O2 also gets caught around furniture and he gets stuck, while she flutters about the room. She puts stickers everywhere, he can't get them off his hand. She loves to color and make fantastic scribbles, he makes tic marks.
He has to take meds around the clock while she took some earlier today for a bug bite.
For her the O2 tube is a fun and interesting toy, for him an annoyance.
Her only scar from an accident where she fell down.. His scars.. All from surgery.
Her legs are twice as thick as his and she is already taller, but we are both shorter than her parents, so she probably would have been anyway.
If she is the slightest hungry, she lets me know. He never does, I think he thinks it is normal. I just give him snacks when I give her snacks now.
His 6mo baby sister, Lil'K, almost eats with a spoon as well as he does.
Sometimes the comparisons and the feeling that "life isn't fair" hits you like a ton of bricks, even 2 years after he came home. Today is just one of those days.

Cloth diapering in the hospital

Using cloth diapers in the hospital can get you some funny looks, but you can get those anywhere.

I have converted/changed the opinion of many a nurse when it comes to using cloth. The nurses actually referred to us as "the cloth diapering mom" for awhile. :P

We frequent the hospital due to my son's medical issues so, I have tried a few different methods of cloth diapering there.

NICU Babyshower

For all the mom's who either know ahead of time that they will have NICU time (high multiples for example) or those, like me, missed/canceled/postponed their own shower due to being on bed
rest or Pre-term labor/delivery. This is going to be a list of great in-the-NICU or post-NICU items for whenever someone asks "what can we do" or "what do you need?" you will have somewhere to send them :)

Extreme Pumping

ACK found this waiting in my Draft pile!!

I recently read a post on babycenter by the author of Kitchen Stewardship, which I LOVE! It was about the strange places she had nursed a few I haven't done, my son was in the NICU during my 6w PP visit and I don't like baseball. But a few I had done and hadn't really thought much of them. Once he came home Nursing-in-public (NIP) wasn't something I thought about doing or not doing, I just did.

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 things

I'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.

Guest Post #3 at Rediscovering Domesticity!

Last week Rediscovering Domesticity ran the second of three guest blogs about "Breastfeeding in the NICU" Rediscovering Domesticity is a blog I have been following for awhile now.
 The first one "Breastfeeding in the NICU: an obtainable goal" is our breastfeeding success story. The second one "Breastfeeding in the NICU: Things that help" is about some helpful NICU advice.

NICU happy song

Co-Sleeping/Bed sharing, Why we do it.

Our Space

When I was pregnant, I was against the idea of Bed-Sharing.  What if I roll on him?  What if he gets stuck?  What about SIDS.. Etc.. Etc..

Guest Post #2 at Rediscovering Domesticity!

Week before last Rediscovering Domesticity ran the first of three guest blogs about "Breastfeeding in the NICU" Rediscovering Domesticity is a blog I have been following for awhile now. 
The first one "Breastfeeding in the NICU: an obtainable goal" is our breastfeeding success story. The second one, up today,  "Breastfeeding in the NICU: Things that help" is about some helpful advice I have gathered in my NICU experience.  So go check it out,  and while your there check out some of her other features, like bloggy basics!
And to all of Rediscovering Domesticity's readers checking out Frog in Stitches for the first time.. WELCOME!!
Here is some of my other NICU posts!

War of the Thermostat

Swaddling in a Womb with a view

War of the Passy

 

 

Drs: The Good, The Bad, The Dangerous

One of our best nurses, she taught us how to swaddle.

Most NICU mom's have gone through enough Drs that you can tell real quick what kind of Dr you have on your hands.
The first thing you must know and truly believe is, Drs are NOT God. Period. 

Make it Personal

Fun Blankets are the first way to make it yours

If your a long-term NICU resident like we were you will want to make your bed have some personality.  The longer you are there the more you will add to it.

A Case of Happy

Friends are the best

When Lil' C got big enough that we cold hold him we started to introduce fun stuff.  We brought in books and some toys.

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...