Sleep Deamons

Night & Day.

Ella can distinguish night & day.

Ella sleeps at night.

She goes to bed around 7pm.  She generally sleeps until 7am, waking once during the night* and on most (lucky) nights, settling back down fairly easily.

*I'm in & out of Ella's room a couple times at night to set up and remove her overnight feed.  Because of her overnight feed (and her short gut) she can't go a full night without a diaper change.

Ella does not sleep during the day.

Night & Day.

Night.

Since the 2 terrible days of sleep training in February, Ella has gone to bed so well at night.  She may fuss for a little bit, occasionally, but rarely for long.  Some nights she goes straight to sleep.

Something happened about 1 1/2 weeks ago... Ella began throwing a tantrum at bedtime.  It was OUT OF THE BLUE!  And it is so painful to endure.  At first I thought she must be in pain.  After 2 nights of picking her up to console her (for which she immediately settled, in half an instant), I knew she was fine, she just didn't want to go to bed.

Problem is, she's beyond exhausted.  Because she doesn't nap!

Ella's ECI coordinator says her bedtime tantrums are "Great" and "age appropriate".  She obviously is not listening to the screams coming from Ella's crib every night.

Day.

Ella has been an inconsistent napper since sleep training, sometimes sleeping for 2+ hours (not for a long time though) and sometimes sleeping for 15 minutes.  Over the last weeks she rarely sleeps more than 30 minutes at a time, maybe twice a day (if I'm lucky).

At the beginning of this month I tried the CIO technique for a weekend nap and she nearly won (actually she did win).  After an hour of screaming which was torture, she slept for 20 minutes before she pooped and woke herself up.

More and more, our nights are one of the following scenarios:

• Tantrum as soon as, or often before, I put her down to bed; this is when she fusses though our entire bedtime routine (bath, bottle, books, singing, bed).
• Whining late in the afternoon during my brief waking afternoon time with her, falling asleep during her bottle and letting me put her in her crib without a bedtime routine.  Set her down asleep, dog barks or shakes (cling, cling, cling of the collar) or I take a shower (her crib and my bathroom share a wall) and the tantrum begins.
• Nap LATE in the day (5pm or later), leading to a later than usual bedtime (which is fine with me) but still a tantrum when it finally comes time to go to bed

I understand that while Ella sleeps approximately 12 hours overnight, she still needs at least another couple of hours of sleep during the day.  I don't care if it happens in one nap or two.  

I just want Ella to nap during the day so my brief time with her after work in the afternoon/evenings can be more pleasant. Her fussiness doesn't bother me as much as break my heart.  While I know how to make her happy (silly songs and funny voices/faces), I don't want to have to work so hard to make her smile late in the day.  

I will probably reread sections of my sleep training book this weekend... I should be doing it now, rather than writing.

If you have tips on HOW to get a 9 - 13 month old (her developmental vs. adjusted vs. actual ages) to nap during the day when sleep is her nemesis, please share!

Memorial Day Road Trip

We did it!  We had our first road trip!  Years in the making and at 13 1/2 months old (actual).

I had mixed feelings about travel for a long time.

So much to pack for a micropreemie with medical needs... (I added another dozen items that are not on the list below.

Outings/Day Trips
	Item to Bring	Notes
DIAPERING
	Diaper Kit	Ensure it is stocked
	~Diapers
	~Wipes	Ensure wipes are stocked
	~Diaper Cream
FEEDING
	G-Tube Supplies
	~G-Tube Emegency Kit	Kept in Diaper Kit
	~G-Tube Extension Set	The tube used for "tubing"
	~G-Tube Syringe	Used for "tubing"
	Bottles	Depending on time you will be gone
	~Bottle(s) with 2 scoops Elecare
	~Room Temp Water Bottle(s)	Use 120ml (up to 150ml)
	Food	Future needs
	~Jar(s) of baby food
	~Spoon(s)
	Sanitary
	~Clorox Wipes
	~Hand Sanitizer/Wipes
OTHER
	Pacifiers
	Extra Clothes	Weather appropriate
	Sunscreen	If outdoor activity, apply sunscreen before leaving AND ensure travel sunscreen is packed for reapplicaitons
	Sun Hat
	Sun Glasses
	Swimsuit/Swim Diaper
	Towel
	Medicine/Syringes	If applicable
Overnight Trips (includes everything from Outings/Day Trips)
	Item to Bring	Notes
FEEDING
	Bottle Warmer
	Bottle Brush
	Bottle Washing Bucket
	Elecare Can(s)
	Filtered Water	At destination
	Formula Mixing Pitcher
	Baby Food	Jar & Cereal
	Food container
	Spoons
	Bibs
	Pump Supplies
	~Backpack	Will need a hanger (at destination)
	~Pump Bags
	~Pump w/ Power Cord	Bring Clamp for pump as needed
	~Paper Towel Roll
	~Tape
	~Ice Pack(s)
	~Cooler
MEDICINE
	Imodium
	Tummy Drops
	Prilosec	Refrigerate
	Antibiotic	If Applicable (Refrigerate)
	Infant Advil	Just in case
	Syringes	CVS syringe, tiny syringe, antibiotic syringe, Advil syringe
SLEEP
	Sheet Savers
	Pack & Play Sheet
	White Noise machine
	Musical Seahorse
	Furry Guy	The paci with the monkey attached
	Lovie
	Blanket
Toys/Books

And because let's face it, my last intentional trip was to the mountains to visit my parents and that's where it all started... I was in the emergency room, then the ambulance, then in Asheville and it was 9 weeks before I would get home... Ella had been born, had major surgery and was 9 weeks old.

The last time I drove (in any direction) that route was when I was chasing after the ambulance bringing Ella "home" to Charlotte.  

Actually, I remember the last time I drove that route from Charlotte... I remember being on the phone with my sister.  She was asking about my high risk pregnancy (as she was in her OB/Peds class in nursing school).  

So while the idea of a road trip now makes this once love-to-travel girl sweat... being so far from Ella's doctors, what if something happened?!?  A road trip to the place where everything started...

Well, we did it!  And we did quite well.

My dream of Ella and the dogs traveling in the back seat of my car was exactly as I imagined.  

Izzy & Ella ready to go!

Faith, not so sure from the floorboard (her preferred spot)

Ella slept for much of the trip over, she only fussed when she had a dirty diaper - and then when I put her back in her care seat after changing it - while telling her we were only 10 minutes away.

I'm happy to report that she went to Grandma immediately without reservation!

Grandma also had a new baby doll that was a BIG hit!

I was not sure how we would do, sharing a room.  Ella (thankfully) has such a keen sense of hearing that me just shifting in the bed next to her (in her pack & play) could make her stir.  Add in the dogs, who I wanted to keep out of the room but they had their own agenda...  she actually did good.  I removed the dogs collars (working on finding quiet tags/collars) and while she stirred a few times she slept all night!

 The video is of Ella talking to, reaching/grabbing, kissing her new baby doll.

We went to a farm owned by friends of my parents to see the ducks and other animals.

Checking out the ducks with the funky hair (like Ella's)

Miss Gail & Ella (this is before the meltdown - she doesn't like "new" people)

This is mid-meltdown.  

 We walked out to their screened in gazebo next to the creek where Ella and I lay in the swing and she took a late afternoon nap.  It was so serene, I could imagine many would pay for a massage or yoga retreat in that very spot!

View of the creek from the gazebo

Grandma & Grandpa hosted a "cookout" at their place on Memorial Day (Grandpa had rotator-cuff surgery 2 weeks ago so grandma insisted on pre-cooking everything for their gathering).

Rocking on the front porch

Hanging out for breakfast

Adorbs all dressed up for Memorial Day!

Eating her peas at the big people table

I'd love to share more but it's getting late.

Developmental Pediatrician Intake

It's not unusual for a micro preemie to follow-up with a Developmental Pediatrician, actually I'm surprised it's taken so long for us to get connected/referred to one.

I received the intake forms last week and couldn't believe the THREE packets of forms that have to be filled out.

Packet 1:
13 pages of forms and 2 letters to the parent(s)

Packet 2:
2 pages of forms

Packet 3:
15 pages of forms (about 8 pages to be filled out by the child's teacher... yeah, um... not applicable yet)

Besides the fact that filling out medical history forms for so many various doctors and therapists is extremely time consuming, I actually found the intro letter to be a little "off-putting".  I understand that it is a form letter not generally targeted toward the parent of a 1 year old micro preemie, but this is what I read immediately upon opening the large manilla 8x10 envelope, not even sure of who the "letter" came from.

Dear Parents, 

Your child is being evaluated for attention, school, or behavioral problems.

Way to start a relationship with a parent....  do they not know that a parent will read this sentence something like this:

Dear Parents, 

You screwed up your child!!! 

It goes on to provide instruction on filling out the multitude of forms yourself, getting the school/teacher to fill out the other pile of forms, sending them back to the practice - THEN they will schedule an appointment.

To add insult to injury, letter #2 in Packet 1 reads as follows:

Dear Parents,

Here at our center we are frequently asked to evaluate children whose parents are never married, divorced or are in the process of a divorce.  

It goes on to talk about how the parents need to work together in the best interest of the child.  Because of this letter, rather than leaving Father blank on the preceding form I indicated "Donor, no father".

But reading that first sentence of the letter, I read it something along the lines of this:

Dear Parent(s),
Because you are not married, you screwed up your child!!!

Honestly, this is nothing that I lost sleep over, probably because Ella is so young I know I have not screwed her up yet so it's not directed at ME.  But for the parents of older kids who get this package (and generally overall), it just seems like the initial communications come across a bit hostile.

What do you think?

GI 2nd Opinion and More

Wednesday I took Ella for a second opinion at the other Pediatric Gastroentronolgy clinic in town.  I had asked around about the doctors at the "other" clinic to learn about them and find out who might not treat Ella as a "textbook" SBS case.

Dr. C came into the exam room, we discussed her history at length and then he started discussing her feeding issues/oral aversion.   While she eats by mouth, we also use the tube.  He wants to build on her desire to eat by mouth and discussed the number of SBS babies they see from NICU through tube removal (right in their office).

He asked about reflux and vomiting.  Of course I'm very proud that Ella has never vomited (okay, 1 time EVER, quite minimally). She doesn't have reflux.  It's pretty unheard of.

Dr. C discussed 'silent' reflux where it doesn't come all the way back up but it does reflux from the stomach.  Between her prematurity, SBS & tube, those are all triggers for reflux.  We could admit her, do an invasive esophageal procedure to investigate... or we can try her on a reflux medication and see if her oral intake improves.

He also didn't impose limits on how much of her veggies she can take by mouth.  He even said some fruits would be beneficial, the ones that are heavy in pectin (lower in Fructose) such as Bananas, Apples and Pears.  He also said she could start on proteins too.  Of course we would be conservative in adding these in... rather than the standard of adding a new food every 3 days, perhaps every week instead.

The nutritionist at the office also gave us a Jr. level, vanilla flavored formula (same formula she is on now) to try out to see if she has more of a desire to eat more with a sweeter formula.

There was a lot more to the appointment but those are the quick highlights.  I really liked that Dr. C was focused on Ella's eating rather than overly cautious over her (well adapting) intestines.

My only "complaint" was that he advised we try these modifications and follow up in 1-2 months.  The first follow-up appointment available was 2 months exactly.

I hate to leave Dr. R, but Dr. C seems to be more of what Ella & I need in a GI.

In other news...

We have been out & about quite a bit.  Ella did graduate to a convertible car seat!  Uncle Jeffy came over and installed her swing on our porch.

We went to a Kindermusik session on Friday (felt like a playdate, although our first playdate so how would I really know what a playdate really is?). It was a bit overstimulating for Ella but she did recover well.

We went to an Intro to Music Therapy session at the Imaginon Saturday.  I'm glad we did because Music Therapy & Kindermusik are very different things and I believe Music Therapy is exactly what I've been looking for for Ella.

We went to the zoo with several other SMC mom's and kids on Sunday.  It was a 90 minute drive (the first time in her new car seat), we spent about 3 hours at the zoo and drove the 90 minutes home - so a 6 hour excursion!  That's our biggest adventure so far!

August 2012 - NICU Car Seat Test (what an amazing milestone! We waited so long for our car seat test!)

May 2013 - about 5 days before we said Bye-Bye to the Infant Seat

First time in my new Big Girl (still rear facing) seat! Let's go to the zoo!!

Wiped out.  In the zoo parking lot, Mama could barely buckle me back up.

Elephants at the zoo

I will add some photos/videos of PT/OT when I get a chance to go through them.  I've been trying to take more photos/video of our sessions. 

Time for bed.

I couldn't do it.

I have a half written post about Ella's NEC terror on this day last year.  I started it several days ago and wrote the background but I can't bring myself to write the detail of those days.

And that's okay.

As much as I would like to document the details (and know I will one day), I can't push it.

I took today (and the next two days for other reasons) off work because I knew it would be difficult for me.

I spent the day with Ella - and my MOM! - and had such an enjoyable day!  Remember, we are still slowly getting out of isolation... and my schedule to get out of isolation has been delayed due to this darn cold, rainy extended winter!

Today was beautiful!  Sunny.  Warm.

We went out to lunch.  I've taken Ella to a restaurant patio once before but this was "our" first meal out together.  Then we went to the park for a walk and swinging.

We did a lot more, but those were our excursions of the day.

Here are my Facebook & Twitter posts (and photos) from the last 24 hours.  Plus a few extra photos.

Last night Tweets:

One year ago tonight was the start of a terrifying nightmare. Post is not finished yet (having trouble "going there") #nec

I would have given anything at that time to know E was going to survive and be okay. It was horrible. #nec

I want to document it but have a wall that I hit and then "mind block". The next few days may be tough...

Right about this time last year Ella was exactly 1 month old and just coming out of emergency surgery. The surgeon told me it was rough going and "she might not survive". Celebrating where we are today!!

And we are continuing our celebration at the park...

All of this celebrating is exhausting.

I am installing her new convertible car seat tomorrow (actually, I'm doing my hair, putting in my contacts and going to the fire station to have them install her new car seat tomorrow).

NICU Car Seat Test - Aug 29, 2012

Last day in her infant car seat - May 9, 2013

Nurse K came by for a visit.  Still working through "stranger" anxiety.

I met the parents of a little boy the night after Ella's emergency surgery.  He was beginning to go through the same thing and ended up having surgery the next day.  Two days later he passed away.  I will never forget that family.  I dedicated "ducks" in their honor, along with the other NICU babies we were honored to be neighbors with - who never had their Homecoming.

Tomorrow Ella will have her first combined OT/PT session and also take her first trip to Kindermusik!  Later in the afternoon my local SMC group is getting together with a SMC therapist to discuss how to handle the "daddy questions".

Grandma has been here this week as the AP is on vacation.  Grandma will go home Saturday so Ella and I can enjoy a couple of days on our own.  We are going to try to go to the zoo with a few SMC friends on Mothers Day (our biggest outing yet)!

I just love my little girl!

Another BIG DEAL!

Ella had her first (Stage 1) veggies yesterday!

Yum!  She looks Sweet Potato drunk, doesn't she?

This is a BIG DEAL!

For those that don't remember her background... I'm working on (okay, thinking about) a post for our upcoming terriversary, her NEC battle.  That story next week, I hope I can do it justice.

Ella had a portion of her small intestine removed with the NEC battle that nearly took her life.  And in her second surgery, when she was having her ileostomy reversed they had to take a good portion of her colon.  That's when her g-tube was placed and she got the Short Bowel Syndrome (SBS) diagnosis... ugh, that was a really bad time too...

Essentially, SBS babies, kids and people overall have a difficult time eating and processing foods.  Many babies/children end up with oral aversions, they don't eat by mouth.  Many have a difficult time gaining weight or balancing their nutritional needs.

Ella has been on her special formula since last summer when they took her off breast milk (OH, don't get me started on that again).  I have another story about this to write up with a happy ending, soon... soon...

She was able to start cereal a couple of months ago, I stuck with oatmeal due to the 'arsenic in rice' scares.  She had done alright with cereal.  She's done better with the Neocate Nutra (special formula that is thick/pudding-like).

And remember, she has the TUBE... we are directed to tube any amount she doesn't take by mouth so she gets her prescribed amount daily (35 oz).  People always comment about how big she is... well, there is a reason.  She has a prescribed amount she is required to intake daily, either by mouth or tubed directly into her tummy.  FORCE FED is what I frequently call it.

Graduating to veggies is a BIG deal.  She had her bloodwork on Sunday and it shows that she is absorbing her nutrients well, her electrolytes look good, she is NOT dehydrated.

I didn't get into the "mommy adjustments" I have made to the prescribed amount.  What this tells me that even with "mommy adjustments" (downward) she is absorbing and growing great!  I only imagine how big she would be if she got her FULL prescribed amounts!

The GI gave me the option to either begin reducing her overnight feeds (she's on the equivilant of 4 bottles overnight via pump/tube) OR introduce veggies.  I actually managed to get her to agree to both.  We are reducing her overnight feed by 1 bottle plus 3 ounces (adding the 1 bottle into the day) AND allowing her to begin 'tastes' of veggies every day (she actually said twice a day).

She advised to start with green beans because that has been reported to slow stooling (another SBS side effect, multiple dirty diapers daily).  I only had sweet potatoes on hand and our Speech Therapist came yesterday afternoon, so we started there.

SHE LOVED IT!

I'm so excited to see that she is happy with the introduction of her first 'real' food.  So many SBS babies don't eat, at all.  I can't wait to try more veggies very soon.

She is amazing!

Side note:  I have an appointment with the "other" pediatric GI practice locally in a couple of weeks to get a second opinion on how they would treat Ella.  She proves it over and over, she is not a 'typical" SBS baby, I don't want a doctor who treats her like one.