New Hurtles on our Journey

The past few months Baby C and I have been battling a new hurdle for me... Tongue Tie... 

Seriously! What's next?   Thankfully I have a very supportive partner and that has made all the difference with all of the hurdles that have come my way.

A few months ago I was getting a little worried about Baby C's weight gain.  I kept looking for the fat rolls that weren't coming.  I looked at pictures of his siblings at his age and noticed Baby K didn't have any rolls then either, which should have been more of a warning since she has a lip tie.  Around this time I also noticed a groin hernia and he seemed to be a bit fussy. We went into the Ped to discover that at 2 months he had only gained 1 lb since birth.  

This sent us both into a panic, so much so that her first suggestion was to put him on formula.  She knows me, and knows how I feel about formula.  I also knew that my milk was not the issue.  I called the IBCLC that day and set up an appointment.  Until we could meet I "Triple Fed", this meant feeding one side while pumping the other, swapping sides and then bottle feeding whatever was pumped.   This was a long exhausting process.  Especially with the older 3 running around and attempting to get school work done.  At one point I actually broke my hand pump, and once I had my old electric double pump.. I was attached to the wall for at 15-30minutes every 3-4 hours.  

I met the IBCLC at the Pediatric Dentist's office where both confirmed the tie. Baby C was diagnosed with a Stage 3 Posterior Tounge Tie.  He wasn't getting much milk transfer from latching and would spit up much of what he did get.  

The Dentist suggested we go see a Speech Therapist for evaluation and therapies for the tie, which was made easier since Lil C already has weekly therapies.  Baby C was also getting weekly weight checks and his weight had been slowly increasing thanks to the triple feeds, but the stress and exhaustion of the feeds did make me consider formula a few times. 

Meanwhile we had the appointment about his hernia.  The Surgon didn't really see a tie but assured me that he could do that too when he did the repair.  Good news right? Instead of being awake he could be asleep and we could deal with all the painful stuff at once.

After he came out of the hernia repair the surgon informed me that he had had 2 hernia (both now repaired) and that he couldn't get a Pediatric ENT to come look, but the plastic surgeon looked at it and he didn't think it looked like a tie either, so he didn't clip it.  I almost broke down in tears.  I informed him that his problem wasn't length but that it was to thick.  "Besides he doesn't have any weight gain issue."  I managed not to smack him. But I all but yelled at him that he was only gaining weight due to the triple feeds.   He suggested we see a pediatric ENT or a Speech Therapist.  When I told him we had seen a Pediatric dentist and a Speech Therapist he asked what she said.. and when I curtly replied that she confirmed it... well the look on his face can only be described as "Cat got your tounge" 

After Baby C healed from the repair I was hoping he had gotten big enough and strong enough (like Baby K did) that he didn't need all the triple feeds, I started slacking.. and at his weight check, his weight had slowed way down.   So I scheduled the clip with the Pediatric Dentist.  

He didn't fuss to much and for the first time he fully drained me and barely spit up.  Plus the spit up was mostly clear.  Since the repair a week ago he has gained 1 lb and gotten back on the growth curve.  His spit-ups aren't every feeding and most of the feeding anymore.  And best of all, he finally has fat rolls.  

Happy World Breastfeeding Week Ya'll! 

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.

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 :)

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

Family Adventure

Sorry about Friday folks.   It was a crazy week...  On Thursday Lil'C had a checkup with his cousin Lil'E.  Yep.. two infants at a Dr appointment at one time, and both getting shots.  They both calmed down pretty quickly.  After that I started having a health issue and ended up in the ER.  Lil'C stayed home with my family while hubby, my mom and myself was at the hospital.   Mom left earliest and stayed with Lil'C until we got home sometime after midnight.  All in all.. I'm ok but have to take it easy for a bit.
Wait till I tell you about the booby traps I got because of all that!  It was hard not to laugh in the face of some "medical professionals"  but more on that later. 

Also this week is our church's VBS.  What kind of art teacher would I be if I didn't help with crafts? .... I'm not so good at taking it easy....     We're doing "Pandamania" it's ... interesting.  I came into it kinna last minute so they ended up getting mostly "pre-packaged" crafts...  and if you have ever done those you will know that they don't usually take long to do.   So I'm working on coming up with some ideas for filler crafts. 
Got any ideas?? 

I just don't get it...

Oh No.. Here she goes again....

There are things in this life that I just don't understand... abortions being one of them. Yep... here I go getting all controversial again... I'm really, honestly, trying to understand the thought process that makes it ok..

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

I shall 'splan

It wasn't supposed to be a big deal...

I kinna feel like I need to explain myself...  After seeing all the other bloggy Moms doing the flats challenge I feel kinna left out...
or something like that...
The reason I decided NOT to do the handwashing part is actually pretty simple...  I've already done it.   I lived in Hattiesburg, MS in August of 2005.   I was living in a nice apartment complex off of I-59.  No one took the storm all that seriously...  We were all joking about how we would all get a day off from class... and that would be the extent of it.... boy were we wrong.
The eye of Katrina actually passed directly over my apartment.  I still vividly remember the feel of the walls of my neighbor's apartment shaking under my fingertips.  I remember watching the faux chimneys on the sides of the apartment buildings rip off and fly past the windows.
My neighbor had friends from the coast, with him who had run from the storm to the "safety" of Hattiesburg.
After the storm passed we were without power and water for about 2 weeks.  
Between the two apartments there were 8 people.  I fed everyone on a small 1/4" steel grill that didn't have any feet.  We burned the wood from the faux chimneys to cook and heat water. 

I had two of these.

Me and the only other girl between the two apartments (were we outnumbered or WHAT!) ended up washing clothes in my fabric stash buckets.
Yep.. I washed clothes for 8 people for 2 weeks in buckets.  See why I decided not to hand wash?  I've had enough hand washing for a life time.

But I did learn something from the flats challenge.  I learned LOTS. 
I learned that I like using flats, most of the time.  DH hates them and refuses to use anything other than Smartipants.. or some other form of easy change diaper.  Sometimes, if all else fails, he will change a Flip. 
I think they are great for at home use and for healing diaper rash.   Sure I have gotten wet a few times since I started using them, but that is because I never use a cover.  It isn't like I get soaked... just a bit damp.   We have also had a few poo leaks.  These past few weeks have been crazy with him being sick.   The antibiotics caused horrible diarrhea which caused horrible yeast diaper rash. The rash needed to breathe as well as meds.   Well.. I REALLY don't wanna use diaper ointment of any sort in my Smaris..  So.. I got rather good at the origami fold... and learned to make sure I fold it right to keep the diarrhea from leaking out..  ICK!!!

I'm still hopping to eventually get a Snappi though... I'll have to beg DH.. :P

What did you learn from the Flats Challenge?  Have you ever had to hand wash?  If so, Why?

Flats Challenge

We only partally praticipated in the challenge.  Lil' C did get some flats in his rotation.. Well .. flannel blanket "flats".

Babywearing

Our first time Babywearing in the NICU or "Rooing"

We babywear  Lil' C anytime we are in public.  We do this for 2 reasons, ease of movement and health reasons. 

Flats Challenge

Lot's of wiggling going on

Next week is the DDL Flats Hand-washing Challenge.   For me it could not have come at a better time.  Lil' C is cutting teeth.  How does cutting teeth and a hand-washing challenge have anything to do with one another?  More than you would expect.  Cutting teeth causes ALOT of drool... Which in turn causes diarrhea... which causes some BAD diaper rash..  (Seriously... the last time his bum looked like this was when he had to wear Pampers Ultra Dry in the hospital).

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..

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.

Swaddling in a Womb with a view

Standard NICU position does not leave much room for comfort

When I began hunting preemie books I only found one that I recommend,  which is the Sear's book.  In it he refers to the incubator as a "womb with a view" and it made me smile, so I'll use it here :)
There is very little you can do when your baby is in a plastic womb, other than watch.  A few things that we found I'm going to share with you today.