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.

Your First Birthday

My sweet Ella.

You are ONE year old today!

I have so many mixed feelings about this milestone of yours, but the overwhelming feelings are love, pride and gratitude.  Because you had to come earlier than anyone expected, it was actually a very scary time when you were born, and for the months thereafter.  BUT, this day is not about mommy or that fear, it is about celebrating YOU!

Mommy wished for you for a long time.  I felt like I knew you, long before you ever got here.  I kept trying to bring you to me because I already knew what an amazing little girl you would be.  And I was right!

You were born in Asheville, NC at 12:12am, just minutes after Easter Sunday after spending only 25 weeks and 2 days in my tummy.  Mommy vaguely remembers hearing you actually cry before the good doctors and nurses took you away to take really good care of you (your wubba-nub "Furry-Guy" is named for the neonatologist who was at your birth, Dr. Furiguy). Dr. Furiguy is actually the one who first called you a "Rock Star", and that nickname stuck. Grandma Carol went with you and Dr. F since Mommy had to stay back with her own doctors and couldn't be with you yet.

We spent your first 9 weeks of life in Asheville with Nurses Deb, Terri, Roxie and Donna taking such good care of you. Your Aunt Rusti flew up to Asheville on the day you were born to help take care of you and Mommy. Since Mommy was sick, I didn't get to see you until you were 1 whole day old. I asked the doctor what I had to do so I could see you and they said I had to be able to get up and walk across the room, so I did (and scared everyone in the room when I did it).  And I got to see my Ella for the very first time.

You were so very tiny at 1lb 2oz and 11.4" long.  The ultrasound photos from just the week before sure made you look like you had more baby fat on you than you actually did.  You were skin and bones at the time.  Your eyes were still fused shut.  You only needed to be on the ventelator for 1 day before they took that out and put you on the CPAP (the big contraption that made it hard to see your whole, beautiful face).

The next day, Aunt Lynde and Donna came to visit.  We all went to see you again.  That time, Nurse Deb took you out of your incubator so mommy could hold you for the first time!  You were so tiny I was afraid I would break you.  I didn't understand at that time how very strong you really are.

Mommy was with you at the hospital every day!

When you turned 1 month old you got very sick and had to have your first surgery.  This was a very scary time that I will write about some other time.  Let's just say that this is the time that you convinced me exactly what a fighter you are.  And for the rest of your life I will know that you can do ANYTHING you set your mind to and fight for!!!  

At 9 weeks old, in June, you were breathing all by yourself!  The next day you took your first car ride (ambulance) and came home to Charlotte.  You moved to the hospital just around the corner from our house and Nurse Tammy and Pam took good care of you, among many others like Kristina too.

You had your second tummy surgery on July 2, another scary time for Mommy.  July 21 is the day you were originally supposed to be born but you were already 103 days old by then! 

You had your 3rd surgery, your eye surgery, in August.  By then you were a pro and got through that surgery quickly, recovering easily although the follow up exams were frequent for many months thereafter. Of course, before that surgery mommy made VERY sure all of the doctors were very aware of everything they needed to know about you and your previous surgeries so they would know how to take extra special care of you.

Finally, on September 19th, at 164 days old (5 1/2 months), you came home with mommy!  You got to see your house, your pretty bedroom, you met your doggies, Izzy & Faithy.  Grandma came and stayed with us to help us out for a long time.

You immediately started Physical Therapy (PT) and Occupational Therapy (OT) every week.  The first few months at home were very busy for you with lots of doctor and therapy appointments.  Mommy felt much more like she was your nurse than your mommy sometimes.  You loved to be held and made it known that we shouldn't put you down.

In December you had to go back to the hospital because of an infection and we stayed there for two weeks!  Your first Christmas was in the hospital.  But, you also were able to have the central line removed from your chest (you had that since your first surgery in May).  You were much happier after they took that out!  We came home on New Years Eve Day and everything has been different since then.

Grandma went back home.  Natalie, your Au Pair, came to live with us and take care of you while mommy works.  While you have lots of therapy appointments each week, your doctor appointments are much less frequent.  Mommy doesn't have to spend much time being your nurse any more.  You began to show some signs of independence, able to hang out on your own a little bit.  You don't cry very often at all anymore (you were pretty fussy before then, obviously you were uncomfortable with the line/TPN).  Your attention/focus improved dramatically.  

You amaze me every day!  Besides being beautiful (oh my, do you have the longest, curliest, darkest eye lashes I've ever seen!), you are the strongest person I know.  You have faced far too many challenges than anyone should, just in this year and you have come out thriving!  

You are nearly sitting on your own, any day now.  Those surgeries on your tummy have made it harder on you than it is on others to strengthen your core.  You work so hard to strengthen your core every day with all of your physical therapy and 'homework'.  You actually like to do your ab-work, you make it a game.  You enjoy the praise for sitting up so much that you throw yourself back so you can pull back up again, and again, and again.  

You also commando crawl (crawl on your belly).  You are very good at it and can go quite a distance but you are not happy about it, it is hard work.  You are making so much progress getting up on your hands and knees, gaining a lot of strength in that position.  You have been standing/bearing weight on your legs for a LONG time.  I know that once you get sitting and crawling down, you will take off!

For a very long time you didn't like books.  You would cry when Grandma or I tried to read you a book.  Sometime over the last several months that changed and you love to be read to now.  When I read you a book, you lean forward to intently look at the pictures and then throw yourself back against me.  You do this over and over again, rocking & jiggling as you sit on my knee.  

You are doing a good job eating by mouth.  You actually decided to finish your entire bottle for us this morning, on your birthday!  You are doing a good job eating oatmeal occasionally, also eating the special pudding-like formula that Dr. R gave us for your "birthday cake" and starting to work on sipping from a sippy cup.  We still have to use your g-tube but mommy got Dr. R to reduce your calories back to 20, since you have been doing such a great job gaining weight and we have been able to stay at 130ml (just over 4oz) per bottle for over a month now.  The doctor just wants to make sure you are getting your nutrients and stay hydrated, which you are.

You are now 19lb 10.5oz and 26 3/4 inches long!

The pediatrician and pulmonologist have different advise on when to end your RSV isolation.  The pediatrician said we could start getting out in early April, with precautions.  The pulmonologist told us to keep doing what we are doing until the end of May!  Both of these very smart doctors told us to stay away from crowds, groups of children and that mommy has to be in control of who touches you - since the bad viruses are transferred by touch.  

For now, Mommy is planning to stick with the gradual exit from isolation schedule that she has had in her head for a while, which started with your birthday party on Sunday.  We invited Jeff, Jeanie, Lynde and Donna to come over to celebrate along with Grandma, Grandpa and Natalie.  You had a good time, it was very differerent for you to have so many people at the house.  It was such a pretty day, mommy had cleaned the patio and furniture so we could sit outside.  

You don't want anyone except for mommy or Natalie to hold you.  Even Grandama!  And it turns out you are finally teething... one day soon we should see your first tooth!

You know what you like and what you don't like and you let us know.  Yes, you got that from me.

This has been the longest year, yet shortest year.  It has been the hardest, most terrifying year.  It has been the happiest, most joyous year.  I don't know what I believe anymore but I know I truly and completely believe in YOU!

Love,

Mommy

Rock Star Birthday Cake

Blowing out the candle

Mommy and E

Birthday Flag

Rock Star Decorations

My new big girl chair

Swinging with Mommy

A Year Ago...

I'm using this phrase a lot lately.

A year ago tonight I was up all night, trying to sleep in the recliner in my parents basement in the mountains, so miserable. Crying.

The next morning was Easter and I decided I should go to the hospital because I couldn't take the pain/misery any more. I thought I wasn't tough enough... It was just pregnancy, right? It didn't take too long for me to realize I was pretty darn tough to have been functioning at all and I have a very high tolerance for pain.

One of these days I need to let myself go deep into that day, and write about it too. I'm sure that will be healing. I write this little about it with tears rolling down my face knowing tomorrow will be a difficult day for me. I should have taken Monday off work as well as Tuesday...

-------
On another note, we had Ella's birthday party today and it was really nice. Hopefully I will find time to share about it, and pictures, by Tuesday.

Easter... a year later

I started to write a detailed post on Easter earlier in the week.  Due to time and a bit of an intentional mind-block, that's a post that not going to be finished... not for a while.  Maybe next year.  Here is a quick Easter post with some wonderful photos.

Easter.

The day everything changed.

The most traumatic day of my life (up until then)... leading to months of anxiety filled, emotional days, and some additional, much more terrifying days.

I look at this face and I am so thankful that she is so strong, such a fighter - that she is here with me.  My heart also hurts that she has had to be such a fighter, face such pain and so many challenges, many still unknown.

I hope that one day I can look at Easter as a day of miracles, as the day is meant to be and is seen by millions.  To me, it was the start of unbelievable struggle and heartache.

I am thankful that I decided to go to the ER that morning, rather than church.  I know that decision saved both Ella and me.

Since Ella came into this world 12 minutes after Easter...

Happy First Easter, my sweet miracle!  I love you!

Easter Balloon - mommy testing out her new camera

Ella's Easter Basket
No Candy...

Happy girl!

Ella's best attempt at a pose

Mommy is so funny, working so hard to get pictures

Okay, are we done yet?

I love to grab my face

Can you believe mommy makes my hair stick up like that on purpose?

Photo shoot is over mommy.  I've had my bath.  Put the camera away.

Therapy Guilt

I have 50 other things I need to be doing but I really feel like writing a blog post... to you mom's who can take care of your kid(s), work full time and manage to blog regularly, my hat's off to you!!

Just to put it out there, I'm a good mom!  I'm a really good mom!  It may sound cocky or something like that, but when people say "BB, you are a good mom"... I thank them for acknowledging it... but you know, I agree.

I LOVE this job!

My day's are crazy!  Balance is moment-to-moment and only works with planning ahead.   I feel like I have to prove myself at work, that I can do my job with my home commitments... but at the same time, I will flex my schedule as much as I have to in Ella's best interest.

My goal is to blend it all together and make it work... giving Ella everything she needs while taking care of business.

This week we are having 'extra' therapy sessions, on top of our regular 5 home therapy sessions.  The 'extra' sessions are outside of the house.  This therapy, ABM, is well-regarded in the micro-preemie community.  The therapist is only in town 1 week each month and recommends 2 sessions/day during that week.

Between Ella's regular therapy schedule and my work schedule, 11 therapy sessions in one week isn't possible, not for me and not for Ella (there is only so much she can take).  Drawing that line does NOT make me a bad mom.

I agreed to one session a day for the 3 days he is in town.  That makes a total of 8 therapy sessions this week.  Today, for the first time in months, I needed to be in the office (rather than work from home). I went in after our 8am PT session at the house.  I made it clear that I would have to leave at 3pm to get home, get Ella and get to ABM therapy by 4pm.

This is where I can't explain what's happening.  I do not understand ABM therapy.  I have asked Ella's OT, PT, ECI coordinator, eye doctor and neurologist, none of whom have heard of it.  It has something to do with learning and stimulating the brain's response.  But this was our second session (we did a free "intro" session last month), Ella fussed through it, like the first (after all of the talk).  He puts his hands on her almost like accupressure - without pressure from what I can tell.  I've asked what I'm supposed to expect I don't feel like I get a straight answer.

I just don't understand.

And because Ella was fussy today, he did the hands' on thing, but then recommend that I find another time this week to bring her back.  But I'm bringing her back 2 more times, already on the schedule... but he wants me to bring her back at another time when she will be more receptive because he didn't consider this a real session due to her fussiness.

But we are coming back 2 more times this week... let's see how it goes.

But look at your schedule and see when you can bring her back.

But I'm bringing her back at 8:15 tomorrow...

And so on...

If I knew what to expect... if I knew this would be beneficial for her, I would go out of my way to rearrange my work schedule to bring her back again.  PT/OT... I can see and understand what they are doing and what they are trying to accomplish.

Even Ella's neurologist said that while he's not familiar with this particular therapy, most specialized therapies will produce some kind of benefit because it increases the frequency of specialized support in a given area.

The only thing is.. I have no idea what kind of specialized support or what given area this is supporting.

There is a term in the micropreemie community referred to as 'Therapy Guilt'.  I think that speaks for itself.  I am a really good mom but I am still trying to figure it out as far as therapy goes.  While I'm trying to figure it out, I don't want to lose ground... but what I do want to do is figure out what is right for Ella.

And this mom's instinct tells me that finding a good music therapy program for Ella would be the best kind of specialized therapy for her at this time... I really don't know anything about music therapy.  I do know that Ella has a keen sense of hearing and responds greatly to music.  I never knew the ABC song could be so mesmerizing, but for Ella... it's practically a cure-all.

By the way... after only 6 1/2 weeks, Ella graduated from her helmet!  More on that (hopefully) later.

*My apologies... my usual re-reading several times/editing is out the window.  I'm publishing without rereading after writing at all, not once!  I'd post a picture but my iPhoto is frozen.

Rebranding

I hate that I have been MIA - from both here and CaringBridge, but especially here,  my blog.  I think about blogging frequently but when the end of the day comes I never get around to it.  I want to get back to blogging because it has been such a good outlet for me for may years, and it satisfies my "inner writer".

I expect it will be a slow come-back... between the usual busy life we lead, add in tax preparation and sorting/tagging some 200-ish items for consignment next week, plus a volunteer shift.

I am starting with rebranding my blog.  I've thought about starting a new blog but for many reasons I don't want to do that.  I have renamed my blog to My Amazing Ella, also my new Twitter handle.

The blog will be primarily focused on Ella and being a new(ish) mommy of a micro-preemie.  I will, of course, write about being a Single Mom by Choice (SMC - the original focus of this blog) and infertility (the focus of this blog for two years).  I believe that my infertility and determination to be a SMC were instrumental in  developing me as a good micro-preemie mommy.

I haven't figured out whether I will update the URL to the new blog name or leave it as is.  It will be a pain to update as it will break links for those of you who still have my blog on your blogroll.

You may have noticed I turned off Anonymous commenting.  It pained me to do that and I debated it a long time as there are a number of you out there who have commented anonymously with wonderful & powerful words.  Unfortunately the spam just got unbearable and since captcha is just awful... it seemed to be the "best" solution at the time.  I may revisit it in the future.

Posts will still be sporadic for a while... I need to figure out if it's my ISP or my wi-fi device that doesn't transmit a signal all the way to my bedroom. I would probably get to read/post more if I could bring my laptop to bed.

I'm beginning to plan for Ella's first birthday... less than 5 weeks away!  But just the thought of her birthday brings back so many difficult memories from that time.  I want to be able to blog about it... for my own therapeutic reasons.

Until my next post, I'll leave you with some photos...  She does smile, I promise!  When you take the camera (iPhone) out for a photo... let's just say she's camera-shy, for now.

Taken at the end of February by my sister who was visiting.  We were at the hospital for the first time in 2 months waiting on lab work.

Yeah... a helmet AND eyepatch (2 hours a day).  She's a pro at taking off that patch!

SuperBowl Sunday

Dreaded tummy time with her favorite book.

Home Again!!

From CaringBridge.

We are HOME!  Ella has no line!!  

As planned, we made it home Monday afternoon, New Years Eve!  Her last dose of antibiotics was at noon (started 30 minutes early for the nurse), then they had to weigh her and remove her PICC line.  They had us wait another 45 minutes to check the PICC site to make sure it was clotting up before letting us go.

What a wonderful way to usher out the most difficult year of my life (and I hope that was the most difficult year ever for Ella)!  I don't think I've ever been so happy to see a new year come... bring on 2013... health, growth and happiness!

We still have to be careful with Ella's movement as not to reopen the PICC site.  I'm sure you are not surprised that I was not happy with many of the dressings done on her PICC site by the nurses.  I understand they needed to use a pressure bandage after removing the PICC... but it's made of very absorbent material, not good for its placement.  Once it got wet (from being in her diaper) it pealed away and stiffened up.  

They wanted me to keep that dressing on for 24 - 48 hours and then change it out with some medical tape.  It didn't last 18 hours (and that was stretching it) and when I took it off the gauze at the site was urine soaked.  I used an alcohol swab, against the nurses advise upon discharge (she said it could reopen the wound), I felt I had no choice but to clean it before covering it back up.  The wound did not reopen. And I'm very impressed with my dressing!  I used supplies I had on hand from her central line dressing and it continues to last some 30 hours later.

Not bad for a crash course in nursing over 2012!

As of my last post, Ella did go back on TPN last Friday night with the intention to keep her on it each night for a "boost" before she went home without it.  

What I didn't mention is that an obvious side effect of having her line removed and stopping the TPN the week before was a complete change in Ella's temperament.  She's always been a bit on the fussy side.  She never let us put her down or took to her swing, bouncy seat, etc.  She didn't like to be put down on her back and hated tummy time.  

Almost immediately after being off the TPN Ella became a much more content baby.  I was able to lay her down in her crib in the hospital for significant periods of time while she played with the toys we had for her.  I was able to wash/prepare bottles, eat a meal, etc.!  This was unheard of... and very welcome.  Overall she just seemed happier!

So the night they put her back on TPN, the next day the fussy baby returned.  Grandma and I discussed it and Saturday afternoon I notified the doctors that I refused any more TPN for Ella.  They took it in stride.  No doctor has ever heard that TPN impacts temperament/disposition but they seemed to believe me (they said we know Ella best).

We had a wonderful New Years Day... which was Christmas Day for us!  It even had a feeling of Christmas as Grandma, Natalie, Ella and I sat around the family room/Christmas Tree, had brunch and opened gifts!  

Grandma is heading out on Friday... it's going to be an adjustment for us but we can handle it.  The hardest part for me will be that Ella continues to need to be fed every 3 hours day/night.  I will likely increase the frequency of visits that the Night Nanny comes (currently 1x/wk) to allow me a full night of sleep (9pm - 6am).  I can do it.  Hopefully in another month or so we can cut out one of the night feeds again... right now, BECAUSE SHE IS OFF THE TPN the 8th bottle is necessary for her calorie intake.

Now, I must go to sleep... yes, it's only 8:30pm but I have to sleep when I can.  

Happy New Year!!

Go Gators!!

Count Down to New Years Eve

Another CaringBridge Post...

It has been a very frustrating stay at the hospital.  How quickly I had forgotten that the plan changes with each doctor you talk to and the execution differs with each nurse assigned.  Add in the fact that it's the holidays and things are running on short staff...  

Where did I leave off in my last update?

Ah, they removed her central line last Thursday and although it was a surgical procedure it was very minor and simple.  She's been off TPN since last Friday.

Monday, on Christmas Eve, she had a PICC line placed.  They wheeled Ella and me down to Radiology on a gurney that morning (Ella really enjoyed the ride) for what I understood to be another quick, minor procedure of putting a PICC line in her arm.  This would allow for better infusion of the IV antibiotics and if needed, TPN.  It also allows for blood draws without sticking her.  

I waited in the surgical waiting room.  After about 90 minutes I was wondering what was taking so long?  The receptionist called down for me and informed me that they had trouble finding a vein so they put it in her leg.  That's all I was told.  I was very disappointed to hear this as it was not discussed as an option with me.  Meanwhile, the receptionist asks me to answer the phone as she had to run out "for a minute". Really???   I think she was gone an hour!  

Finally I go to recovery to find a cold, unhappy Ella.  The PICC line was not really "in her leg", it's in her groin.  I was seriously upset.  Think about it... a line that must stay sterile/clean in a baby's groin... a baby who has a condition that makes for frequent, loose poops.  What were they thinking?  We are in the hospital due to a line infection and a new line is placed in the dirtiest place on a baby?

Apparently they had no other option, she had bloody marks on both arms for where they tried to put the line in there.  Apparently she's too chubby... ironic since her GI doctor is obsessed with her ability to gain weight.  

So she is getting her antibiotics through the PICC in her groin to treat her central line infection and we are praying that the treatment doesn't lead to another infection.  

Seriously, if I didn't know better I'd think I was making this stuff up... 

Needless to say Christmas Eve and Christmas day were hard.  The PICC dressing had to be changed twice on Christmas day.  It's been changed daily since then. Dressing changes are not fun or easy on Ella (or mommy). And every nurse does it differently... I have to remind them that they have to account for her chubby folds in her diaper area (the dressing will pull up as she moves around).  We are changing diapers every hour or so, trying to keep the area clean; basically changing her every time we think she's peed/poo'd.  

We were going to have a small Christmas in the hospital room but I was still very upset about the PICC line.  When it came time I was just too weepy and my family promptly sent me home to sleep for a few hours.  I felt very much like the Grinch who stole Christmas...  We have decided to reschedule Christmas for once Ella is home.

Ella is scheduled to finish her antibiotics on the 31st.  The Infectious Disease doctor is checking to see what time her last dose is that day, it will be either 6am, noon or 6pm.  We will have the PICC line removed once the last of the antibiotics are done and go home!  ...if the PICC line had been in her arm as planned we would have been able to go home and complete the 10 days of antibiotics at home.

There's more...

She is getting her 8 bottles a day, rather than 7.  We are now using her g-tube.  She is taking about 75% of her feeds by mouth but is uninterested in some bottles/finishing some bottles.  In order to keep her off TPN we are tubing the volume she is not drinking.  I have a fear that using the tube will create an oral aversion, but the nutritionist said today she may be uninterested as an effect from the antibiotics or even just being at the hospital as opposed to home.  I sure hope so!  Too often I feel like we are trading one problem for another...

I get to sleep in 2 hour increments, in-between feeding, tubing, changing and getting Ella back to sleep (plus the antibiotics/pump alarm going off nightly over the 12am hour).  At home, mom & I would split up the night.  That's not so easy in the hospital.  I will say that I go to bed around 8 or 9pm and we sleep until 6-8am.  

Ella's weight gain has slowed while in the hospital, but she's not losing as a pattern.  The doctors are watching her weight daily very closely.  This is difficult since she has been NPO (not allowed to eat) twice in preparation for her surgeries.  It usually takes 2 days after being NPO for a loss to appear on the scale, then she will gain again.  As of today, the GI doctor wants to put her back on TPN at night for the remainder of her hospital stay to maximize her calories.  I don't agree but I don't have a strong enough argument to fight her.  We are increasing her calories in her formula today as well.  

My Dad was here over Christmas.  He came to see Ella several times and was very helpful around the house and taking Natalie to do some things she needed to get done.  Mom did not head home with him as originally planned after Christmas.  Hopefully we can send her home in a couple of weeks.  Natalie and Ella are becoming good buddies.  It's been an unusual situation since we were admitted just a few days after she arrived.  She's been rolling with it very well.  I still can't wait to get home and get us all settled in to our new normal together.

Natalie has a dinner with her Au Pair group on Saturday night and I have made plans to have dinner in that part of town with a couple of good friends.  It's been a long time since I've been so excited about a dinner out!  Grandma is going to do a night shift at the hospital with Ella that night... she's been offering but I've not taken her up on it until I came up with this plan (since dinner is about 25 minutes outside of town, it saves on multiple trips to that part of town, or sending Grandma off to an area of Charlotte she doesn't know).  

For now, we are planning to Celebrate Christmas on New Years Day!  At home.  With NO lines. No dressing. No TPN.  And Ella should be able to have her first REAL bath (not a sponge bath) that week!

Central Line is Gone

From CaringBridge...

I have to say that I was thankful to be in the hospital around midnight Wednesday morning.  I had noticed a wet spot on Ella's clothes on her chest and a short while later the wet spot was bigger.  It was just under where her dressing for her central line was.  I called the nurse and it turns out that there was leakage from that area, although we couldn't see the source of the leak.  Her TPN was halted and they did a quick dressing change.

They took her to the procedure room to place an IV in her hand and restarted her TPN and antibiotic.  

The bad news is that the TPN is really hard on veins - so through an IV, the IV doesn't last long.  

The other bad news is that the antibiotic is really hard on veins - so through an IV, the IV doesn't last long.  

Now put the TPN & antibiotic through the same IV... see where I'm going with this?  Her first IV lasted 25 hours.  The second lasted 29 hours.  They have not placed the third just yet.

Back to the central line.  It was easily decided on Wednesday that the line needed to come out.  The doctor suggested that if there was a crack/leak in the line below the skin that would explain her infection.  Because of Ella's age she had to be taken in to the operating room to remove the line (the surgeon says he can talk older kids through being still enough for the procedure), so she had minor surgery on Thursday.  It went very well.

After surgery the surgeon told me that it appeared she had outgrown her line.  I said that made sense given it was placed when she was still less than 2lbs, she's now about 15lbs.

The doctors have worked hard on putting a plan in place so we don't have to replace the line.  The original plan was to place a PICC line in her arm (which should last 2 months or so) after her infection clears up and send her home using that for antibiotics & TPN.  

A more creative plan was proposed which will require we stay at the hospital longer, for the full 10 day course of antibiotics.  She will need multiple IV's placed to support the antibiotics and TPN while she is here (not to mention daily blood draws too).  But we will also increase the calories in her formula so we can get her off the TPN next week, for good.    She's currently at 89ml/3hr.  The nutritionist at the hospital says that when we go to 92ml on Monday with the extra calories we should be able to stop the TPN.

We have opted for the longer hospital stay with the goal of getting her off TPN, even though it will be hard on Ella (and me, and my support).  

That's where things stand.  

The Peds unit is VERY different than NICU.  There is NO baby care by the nurses in Peds, they do only medical care.  This is why I am thankful that we have Grandma and Natalie to help during the day, giving mama a little break.  

We fix our own bottles here whereas in NICU they made up bottles for the baby.  But it also takes FOREVER to get her "as needed" medicine, like her drops for gas pain.  I will ask for it because she is having pain and it could take 90 minutes to 2 hours before they actually bring it.  At home, when she needs her medicine I give it to her.  Right or wrong, I just had mom bring her gas medicine from home so I can control when she gets it.  

They don't seem to do baby-care on a schedule like they do in NICU (every 3 hours)... so I don't know when they are coming to do vitals or other care and it doesn't seem to matter if I finally got her to sleep a few minutes before.

BUT... we do have walls, a door, a bed for me, drawers for clothes and a TV.  These are all things I would have given anything for during NICU days.  

I've actually run into a couple of staff from NICU since being here, they are so sweet!

Plan C: The doctor just came in and said they will stop the TPN today.  She doesn't need it enough for how tough it is on her veins.  She also said that our GI doctor said not to increase calories in her formula (after Grandma and I just trudged through the calculations on how to mix the revised formula, but that's okay).  But this doesn't change our plan to get off the TPN permanently.

I'm struggling with the doctors/nutritionists about their "calories per kilo daily calculation requirement" (it's a complicated formula based on Ella's weight, how much she has to take in each day).  My biggest struggle is that Ella doesn't want 8 bottles a day and the doctors order that she takes 8 bottles a day (she is 8 months old; 5 months adjusted today).  

Since she has been sick she has been eating less and we have NOT supplemented through her g-tube and she is still gaining significant weight (she put on 10oz in 9 days last week taking 7 bottles daily). 

I'm in "trouble" for allowing her only 7 bottles daily but what I am doing is listening to what Ella wants.  She doesn't have an oral aversion (which is the first thing these people think when I say she doesn't want her bottle)... at midnight she is telling me "mommy, I'm not hungry, why are you trying to force me to eat?"   I'm challenging the docs/nutritionist to look at her WEEKLY WEIGHT GAIN in addition to their daily kilo calorie requirement.  If she were losing weight or gaining really slowly that would be one thing.  But she is bigger than many term babies.  

This is one of the frustrating parts of having a "medically fragile" child... the balance between listening to the experts who are following the standard, and listening to my daughter (and my own instincts as her mother).  They absolutely know what they are talking about, but I'm with Ella day & night and I know her.  I think I'm making a little headway trying to get them to compromise... but I have a feeling it just depends on which of the many experts I talk to at any given time.

Anyway, that's our story.  So now I'm hoping we will be released before New Years.  And I can toss out all of the TPN supplies that are taking up a corner of my kitchen.  We may just have to burn her backpack & IV pole!

Admitted

Written on Tuesday, December 18 on CaringBridge... unable to cross-post via phone.  Finally have my computer for a few minutes.  Unfortunately I can't add the photo right now.

Tomorrow marks 3 months since Ella came home. It's been a good run without being readmitted... 

Ella still has not kicked her crud she's been fighting since December 1. We had a few days last week she seemed to be without a fever... But when she didn't feel like she had a fever, I didn't take her temp...

Fever increased again on Friday and through the weekend. I took her back to the pediatrician yesterday and then for her usual bloodwork (plus an added blood culture). 

The culture came back positive today and we were told to pack a bag and head to the hospital. 

So here we are. I've been teary eyed the last couple of days, feeling so helpless to get Ella feeling better. At least we have a diagnosis and are starting treatment. Docs are still waiting to see exactly what type of infection she is fighting and will fine tune her treatment based on that information. 

Doc set the expectation that we would need 3 negative cultures before we are discharged... So IF that starts tomorrow the earliest we will be home is Sunday. There is a fairly good chance we could still be here for Christmas.... I guess it's a good thing that my sister decided this morning that she and her family won't come for Christmas... It's a 12 hr trip and they are starting to see a cold crop up in their house... Sadly, we just can't have Ella exposed. This will be the first Christmas my family isn't all together... Thank goodness for Skype!

Our Au Pair, Natalie, arrived Thursday evening! She is really sweet and is really good with Ella... Even though she has only met Ella's fussy side so far. I can tell already that Natalie & Ella are going to be best buddies. 

We did get an unexpected bonus today... Santa was at the hospital when we got here! Ella wasn't going to get to meet Santa this year due to contact restriction... But she met him today! Disregard her mess of a mom in the picture... I had been crying earlier when I learned we had to be admitted.

Another CaringBridge post... I swear I have one I want to write specifically for this blog, when I can find the time and energy.

Ella and Grandma this afternoon after a bath.  Ella is wearing a dress that my mom made for my sister (and I later wore) 44 years ago.

It was bound to happen, I just didn't think it would happen this soon... especially under the umbrella of isolation we live in.  Ella spiked a fever.  It was Saturday, December 1.  She was fine that morning.  We all went for a drive so I could run some errands, Grandma & Ella stay in the car.  On our way home Ella started screaming bloody murder.  When we got home I took her out of her car seat and she was burning up.  Long story short, our pediatrician (love her) sent us to the Pediatric ER.  We spent 5 1/2 hours there and had a horrible blood draw experience, but we confirmed that Ella did not have a line infection.

We spent the week giving Ella Tylenol & Advil to combat her fever that went up and down.  By Friday her temp was in the 99 range (highest during her illness was 103.7).  But it is still up and down, not nearly as bad as the beginning.  She's also not been as interested in her bottles while being sick.  When we weighed her on Friday she had lost 4 oz!  I'm happy to report that since then she has put 2.5oz back on, so going back in the right direction.  Because of this we have kept Ella at her 77ml/3hrs and not advanced her in a week, we will advance her again when she is consistently taking her full bottles.

Saturday night, I noticed my throat had that dry feeling... I woke up Sunday with a sore throat and through the day ended up with a fever.  Grandma Carol worked the entire night shift with Ella so I could sleep (I went to bed at 6pm), thankfully Ella had a pretty good night.  LOVE my mom! I was planning on taking over at midnight but she texted me that Ella was sleeping well and I should just stay in bed.  I'm feeling 'better' today, it's turned into a head cold but the fever is basically gone.  I just hope Grandma doesn't come down with it next...

Last week, Grandma & Grandpa were able to fly home to Florida for 2 nights to go to my sister's nursing school graduation ceremony (Way to go Ginger!).  Grandma had a really hard time leaving, especially since Ella was sick and not eating well.  I assured her that I had help lined up, we would be fine and she needed to go.  We survived, but the second night was rough... not much sleep.  I was glad she was able to go and glad to see her back.

Our Au Pair arrived in the US today!  She traveled 30+ hours since Sunday and landed in NJ this afternoon for orientation.  She comes to Charlotte Thursday evening, we are looking forward to bringing her home, having her get settled and watching her and Ella get to know each other.  If I were her I would be exhausted... but then I remember how things were in my early 20's and know she will be just fine.

First time in her exersaucer without a meltdown