Wednesday, October 30, 2013


Nanny L and I held a little pre-Halloween photo shoot of SuperGirl.  I am holding off on sharing the photos until tomorrow... except here.

A full view of her Super Girl costume.
She is wearing boot covers, notice how huge the feet are.

Location 1: Front porch.
Note the awesome carving job on the pumpkin in the background! Go Mommy! 

I'm not so sure about this costume...
Maybe it's not so bad.

Love that tongue.
Her Speech Therapist doesn't love it, but isn't she so cute?!?!

Can you say A-D-O-R-A-B-L-E?

Close up.

Love this one. While you think she is just laughing (she is), she is also falling over.
Nanny L's hand has been cropped out of the photo,
the hand that thankfully grabbed her 1/2 second after the shutter clicked.

Location 2: Side porch.

What the heck are we doing here?  No. It's not going to happen!

Nobody puts Baby in the corner - said because it had to be said.

Frightened SuperGirl?

SuperGirl Selfie.  Love this!

Adding the micropreemie spin to this post, notice that she still needs some support for sitting upright (Nanny L's hands or propping in the corner).  We start with a trial use of the Wunzi on Friday (her PT just texted that it arrived at her house tonight).

You know what is awesome?  Her eyes are NOT crossing in these photos!  Hopefully that means the patching 3 hours a day is working and we can avoid another surgery....

Happy Halloween!

Wednesday, October 2, 2013


I have some very happy news to share!  There is a new nanny in the household. Let's call her Nanny L.  She is long-term (intended) nanny who is fabulous with Ella.  This is her 4th week with us and we have O-R-D-E-R in my household!

At Brunch with Grandma & Grandpa.  Her T-shirt says "My Mom is a Rock Star'
Nanny L is young, like all of our previous caregivers.  While young, she is very responsible.  She actually got her CNA in high school and is working toward her RN (with a desire to work in Peds/NICU). She has worked with special needs kids, therapists, as well as in other nursing-care capacity roles.

Nanny L has the wonderful ability to delight Ella, manage her needs & therapies and keep up with the every-day household needs.  She and Ella clicked from the start.  Grandma was actually around to help out with training during her 'trial day'.   Nanny L picked up on everything quickly.  She takes initiative so she's not just sitting around until I give her something else to do.  She stays on top of Ella's laundry (washing, folding AND putting away). She actually changes the crib bedding when it needs it! She keeps the bottles cleaned and even loads/runs/unloads the dishwasher.  I joke that Nanny L now manages the house... in a way, she does!

She works on Ella's physical therapy, occupational therapy, speech, vision and music therapy homework throughout the day.  She stay's on top of Ella's eye patching (3 hours a day).  She is an active participant during therapy.  She is extremely interactive with Ella, ALL DAY LONG!  
With Nanny L during Music Therapy in the front yard

Actually, since Nanny L started, Ella has been going to bed earlier and earlier.  While I had been trying to get Ella to extend her bedtime until closer to 8pm, she's going to bed shortly after 6pm lately.  And Ella still sleeps 11 - 13 hours a night!  *Ella's naps have still been hit or miss - especially short during the cutting of molars.

That does mean I have less waking time with Ella on weekdays, but I also know it means that Ella is fully stimulated during the day. 

My evenings have been open to catching up.  I planned and coordinated Ella's Homecoming anniversary party (which was so much fun).  This is my SECOND blog post in 2 weeks!  I've also been catching up on reading some blogs again.  The dogs are getting out for exercise most afternoons (we have a dog-weight problem). I subscribed to Netflix so I could watch Homeland (so cool to watch scenes filmed in my neighborhood, office lobby, etc).  Now it's Fall TV premier season, my DVR is getting a workout but i am catching some of my favorite shows.  Oh, I've even started working out after Ella goes to bed (not every night, but it's a start).  

Oh, the grandparents were in town this weekend.  Besides our fun activities, including a trip to the Pumpkin Patch, I got to go to a real adult party on Saturday night.  I can't remember the last time... I had such a good (adult) time!  
Mommy, did you sanitize these pumpkins before setting me down?

She's so close to sitting independently.  

I guess Nanny L makes me feel like I have a partner, in a way.  And most importantly, she adores Ella.

Grandma & Ella at Discovery Place
Grandpa & Ella (and the patch)

Wednesday, September 18, 2013

One Year at Home!

Wow! It has been a long time since I posted.  I've posted frequently in my head... those posts just never make it to publish.

Tomorrow will mark Ella's 1 year anniversary of her discharge from NICU and finally coming HOME!   A year ago tonight was our her last night in NICU.

164 days.

That's 2 weeks shy of SIX MONTHS.

With the exception of those 2 weeks over Christmas last year, we have stayed away from the hospital (knock on wood)!

Nearly six months of not having my baby at home.  Packing up my pump, laptop, notebook each day to spend hours upon hours at her bedside.

Not knowing what the day will bring. Will I get to hold my daughter?
2 days old - first time I held Ella

Will she have any breathing episodes?  Will she have any heart rate drops?

What tests will be run today?

First x-ray after her bloody stool, leading to her NEC surgery

What is her direct bilirubin level this week?  Will she be allowed to eat today? How much will she be allowed to eat?  What is her weight today?
Ella on her actual Due Date 7/21/12

When will she be able to wear clothes? Does she have another ROP exam today (if you never watched your child go through these exams you have no idea how lucky you are)? Will she need another surgery (Please God, NO!)?

Will the doctor come by while I'm pumping and I'll miss him?  Am I really THAT hungry to walk all the way to the cafeteria?
My view down the NICU hall from Ella's space at our 2nd NICU

Am I really that thirsty to have to leave NICU to have a soda or water and have to wash my hands for yet another 3 minutes before I can get back to Ella's bedside?

When will it be our turn for the car seat test?

Car Seat Test - a NICU milestone that occurs shortly before discharge

When will the doctor even entertain discussing DISCHARGE?

164 days of NO CONTROL. Few answers.

While it was a tough adjustment (putting it mildly) when Ella came home, due to her medical needs when she first got home - there are so many luxuries to being home with your baby, after so long in the hospital, that I am still thankful for today.

We're both HOME... together!

Besides being thankful for bringing your child home from the hospital, parents with children who had long NICU stays are thankful for the little luxuries of home that most people don't think about...

Ella is home and I'm...

  • barefoot!
  • braless!
  • in my PJ's!
  • watching TV (the news, a football game, a movie, anything!)
  • with my dogs!
  • having dinner/wine!
  • able to go to bed and still get up with her in the middle of the night (she sleeps through the night now, but this was a luxury in the early days)
  • able to clean my house.
  • able to take Ella for a walk whenever I want
I know I'm forgetting many luxuries... we've been home a year!  Help me out NICU families... what luxuries were you so happy to have because your baby finally came home?

When a child is born a micro-preemie, it doesn't end when he/she is discharged from NICU.  Homecoming is a next step (a GREAT next step) in her story.  This year has been a wonderful year of adjusting, balancing, enjoying, being and LOTs of therapy!  She works hard every single day to do things that come naturally to most.  That's another post.

Ella (courtesy of Grandma) in late August

Wednesday, July 24, 2013

Brief Snippets of our Current State

I'm having blogging withdrawals.  I don't know what will come between the beginning and end of this post, but I need to post. I miss having the ability to spend time writing and editing... this will be another quick & dirty post.

First 'normal' illness
Ella and I ended up with a respiratory virus a couple of weeks ago.  The only source I can nail down is Nanny J.  Thankfully I handled it okay, I only had one miserable morning several days in and felt like a new woman by the afternoon.  Ella came down with it the day after my miserable morning.  It was a little pitiful as she wanted to self-soothe by sucking on her paci but she was so stuffed up she couldn't breathe and suck her paci at the same time... but it took her quite a while to figure that out, and it made her unhappy.  We had a few rough nights but overall she handled her first 'normal' illness quite well.  I'm so thankful I still have our Nap Nanny.  I know it was recalled but I will not change my mind that it is one of the best purchases I've made for Ella, so versatile and the ONLY reason we slept at all those few rough nights (elevated her stuffy head). 

Bottle Feeds
I've said for quite some time that Ella has a love-hate relationship with her bottle.  Back in May the new GI started treating her for silent reflux, because while she didn't show signs of reflux, she had multiple risk factors.  When we started the EXPENSIVE (non-insurance reimbursed) compounded medicine she quickly showed improvement in her bottle intake (by mouth).  Our speech therapist - who has been a wealth of information since we found her - told me that other parents on this medicine have complained that it looses effectiveness toward the end of the bottle.  The $80 bottle lasts less than a month and about 3 weeks in, sure enough Ella would refuse her bottles.  She'd cry whenever I got the bottle near her.  Once I bought a new bottle she enjoyed her bottles again.  

One of the best sources of information is the various Faceb.ook groups that I'm part of related to Ella's diagnosis.  I had read that some children were on Prevacid tablets  instead of the compounded reflux medicine.  This was not on the top of my priority list for some time but I finally got around to calling the GI about it a few weeks ago - toward the end of our 3rd compounded bottle of medicine losing effectiveness.  

They called in a Rx for Previcid solutabs.  We started on 1/2 of a 15mg tab daily.  I couldn't tell a difference, but then, she started to get sick so I couldn't really tell what was causing the problem.  We had our 2nd appointment with the GI on the 15th and it turns out the dose was too low for her size.  We went up to a full 15mg tab daily... but, I was having lots of trouble getting it to dissolve and put it through her g-tube without clogging it up - so there were several days where I questioned how much of the dose she got.  Dealing with a clogged up g-tube first thing in the morning (spending 30 minutes+ trying to unclog it) was not a way I wanted to start every morning.  

I reached out to the FB group again for suggestions on how to give the medicine.  So far it's been better using cool water (you would think hot water would dissolve it better) and breaking the tab in half, using 2 syringes of 3/4tsp cool water to mix and administer.  

Seriously, these details will drive you nuts!


Had Ella not had her g-tube she would have been admitted for dehydration the week she was sick.  She didn't take a bottle at all from Tuesday - Tuesday.  She took ONE partial bottle on Tuesday (from Grandma, much to my surprise) and didn't take another partial bottle until Saturday night.  Monday night she drank an entire 165ml bottle!  It has been 2 - 3 months since she's drank a full bottle (and longer since the one before).  She has drank at least a partial bottle at every feeding since (4x's/day)!  This is huge!

Ella continues to enjoy her puree's.  She only lost her appetite for them while sick for a couple of days.  We are up to these feedings 3 times a day!  She still is not crazy about her fruits but she has enjoyed pears a couple of times.  I did even try a real banana the other morning, which she did okay with.  She LOVES her squash and chicken with sweet potatoes.  She will eat between 5 - 8oz of purees a day.

Overnight Feeds
Because of the increase in eating purees, I have decreased her overnight feeds.  She basically gets the equivalent of one bottle over 3 1/2 hours.  One day I'll write about the tedious details of setting up/unhooking overnight feeds.  It's not a big deal, it's just a lot of precise lessons learned about how to do it while making minimal noise carrying the awkward, heavy IV pole with the pump, feeding bag & ice pack and learning exactly where to step for minimal floorboard creaking. And of course, how to prep the line/extension so you don't stay up all night worrying your child will tangle and strangle herself in it.  Little things like that.

Childcare, oh childcare
Our Nanny troubles have not ended.  Last Monday, Ella and I spent WAY too long at the new GI for our follow-up.  At 11am we were finally checking out from our 9:30am appointment, which means I basically missed a whole morning of work.  I texted the nanny that we were checking out and would be home shortly.  She texted back that she was at my house but didn't think she could work that day.  

What?  Why?  And why are you waiting until late morning to tell me you can't work today?

I texted back that I really needed her to work, she said we would talk when I got home.  When I got home she said she didn't think she could give Ella her best (based on circumstances I'm trying not to share).  I told her that I really didn't care about her best, I needed to know if she could give Ella the minimum necessary to care for her... apparently not.  I told her to go.  

I began to call the handful of people I have for last-minute back-up care.  Two were out of town for the week.  I got one available, but not until late afternoon.  I called my mom - who dropped everything and was packed and on the road within an hour to help me out - since I didn't know how long the nanny would be out or how trustworthy the nanny actually was?  Thank God for Grandma!!  She ended up staying with us til Saturday!

In the meantime, my boss was not hiding the fact that she was pissed that I had yet another childcare issue.  Honestly, I'd be pissed with me too.  Even though it's beyond my control, it's bordering on excessive.

The one thing about having an AuPair, I didn't have childcare issues.  In the 5 weeks since the AuPair had left, I had multiple childcare issues - most of them without notice, putting me and my ability to work in a bind.

And our doctors continue to reinforce that Ella cannot go to daycare, it's not an option.  So my options are limited.

I'm trying to balance the nanny's privacy with my right to share the impacts to our life... and the fact I'm still pissed at the position she left us in.  

Basically there were some long-standing mental health issues that I was unaware of that surfaced.  Background checks on nanny's don't check mental health stability.  

On Tuesday the nanny came by the house unannounced - REEKING OF SMOKE - with a doctors note "writing her out" of work for the week, along with giving her 2 weeks notice.  I told her that I would find back-up care for that last week.

Later, I realized she still had my house key.  I texted and asked her to drop it off.  She came by Wednesday morning, still smelling of smoke, came in the house and asked to hold Ella.  I flat out refused.  I'm a southern-raised, politically correct person, refusing her was huge!  And absolutely the right thing, she never should have walked in the house (I didn't invite her in) or asked.

Interim Childcare
I am SO thankful that it is summer!  I have tapped into several teachers to help with my childcare gaps.  Next week I have another temporary nanny starting.  I'll just call her Nanny3.  Nanny3 has a graduate degree in an area related to Ella's therapy.  She is expecting to start with a company expanding to our city in the Fall and needs work to tie her over.  She is extremely mature (as validated by references) and was excited to see how I maintain nanny & household scheduling.  I think it will work out well although I don't know how long it will be for, it will tie us over until September at the earliest, based on our agreement.

The big 2x/annual consignment event that I participate in is this week.  It takes weeks to prep: sorting, matching, hanging, pricing, entry into the system, tagging, resorting, loading up, dropping off.  It's all done.  I was going to volunteer this week, which gives you early shopping passes (which is ideal, you get first dibs on what you are looking for)... BUT, with the childcare drama I knew I couldn't take more time out of the office so I cancelled my volunteer shifts.  Thankfully a friend is giving me one of her early shopping passes and Grandma is coming back to keep Ella so I can shop for as many hours as I need (without blowing my shopping savings on a sitter).  This is the sale where I get the majority of Ella's upcoming seasonal clothes. The clothes are in great condition and new to us!

1 year adjusted
If Ella had been born on her due date, Sunday would have been her 1st birthday!

Developmental Pediatrician
Saving the best for last... We saw the Developmental Pediatrician for the first time in the beginning of July.  I was very nervous about this appointment.  Bottom line is she said that at this point she does not see indicators of Cerebral Palsy or Autism!  Wow!  While it's no guarantee, it was so wonderful to hear.  I was actually afraid we would get an official CP diagnosis that day. She believes that Ella's delays are as expected for a micropreemie with her issues and she should grow out of them in a few/several years.

Friday, June 28, 2013

Childcare - Ugh!

Childcare (Ugh!)

I could have also titled this post "Thank God this week is OVER!".

As I considered becoming a SMC I thought a lot about childcare and my support system.  I had originally planned on daycare but knew there would still be tough moments since my family does not live nearby.  While struggling with infertility, when I allowed myself to think about having my baby I thought more along the lines of a home daycare or nanny-share with neighbors.  Of course, those situations could cause significant issues should an unexpected need for back-up care arise.

And then I had a micro-preemie.  And my childcare options were immediately limited to exclusive in-home care.

Let me back up and provide an update.  In June I exited the Au Pair program with about 6 months left to go.  I don't want to go into the details but will summarize... live-in help was not the right child-care option for me.  

As someone who has lived on my own for nearly 15 years, I struggled with sharing my house.  While my house is ideal for a roommate/AuPair situation - the entire 2nd floor is guest space, I bought a TV & installed Direct TV for the AP bedroom - that only works when the other person living in the house wants their own privacy as well. I was "sucking it up" for months and as a result getting moody/bitchy.  I felt like it was impacting the time I would never get back with Ella.

It was a hard decision because AP and Ella loved each other but when I finally decided to be true to myself and told the AP I needed space/privacy, she shut down - wouldn't respond (literally head against the wall).  Shortly after that I learned that I still had a short window of time left where I could recover most of my money from the (remaining) program and decided to let her go.  Thankfully, she found another family to finish out her last 6 months in the US.

Before I made the decision official I put out feelers with our local neighborhood mom's group for nanny recommendations.  I was surprised at the number of referrals I received.  It was good timing as well as I was open to summer-only help, to get us by until I could find long-term help.

I ended up with 2 really great nanny's, one was long-term and the other was summer only.  In choosing, I went with the summer-only (Nanny J) based on my gut.  She is an experienced sitter/child-care provider and an EMT who is waiting to start with Medic this Fall.  She is really good at getting on the floor with Ella and supporting her therapy/homework which is VERY important given Ella's delays.  She was also eager to learn to use Ella's g-tube.

Part of my decision to go with her was strategic as in the long run she could be a good sitter/back-up care option for the future.  Someone familiar with Ella and her needs (although those are ever changing).

On Thursday of her 2nd week of work, Nanny J got sick.  She was perfectly fine and chipper when she got to work but upon coming home from a walk with Ella before noon she was coughing and sneezing.  She said she feared she might have the virus that was going around her house...  

That's enough to freak out a micro-preemie mom!  I sent her home to rest.  I spent a lot of time that afternoon trying to find someone to come keep Ella on Friday without much luck.  During Music Therapy that afternoon I mentioned my dilemma to the therapist and she recommended her sitter, who used to work for her company and is a kindergarten teacher. AND she didn't work for her on Friday's.  I took her number and called her based on that information.

I had to go into the office downtown for a couple of hours on Friday.  As great as the sitter was, all I could think is "I'm leaving my baby with a stranger".  It worked out well and I'm actually trying to get her to come back next Friday for another gap in childcare due to the holiday.

Long story... a tad bit shorter

I assumed Nanny J would be better by Monday.  Sunday night (the weekend is a whole other story I'll never find time to blog about, so just know we had a LONG weekend because I volunteered to do something that was too much for Ella), late I get a text from Nanny J saying she had been better but her fever spiked again.  So unexpectedly I was without care on Monday.  Due to our long weekend I emailed my boss and told her I was taking the day off (as I call it, a mental health day).  

Nanny J thought she would be better to come on Tuesday, so she did, and wore a mask (because yes, I have masks in my house).  I came out of my office close to noon, took one look at her and sent her home.  

Remember, as a 25 week micro preemie, a virus would very likely put Ella back in the hospital.  While I was concerned about the nanny, it's more about Ella.

I immediately started reaching out to contacts to try to find someone to watch Ella on Wednesday.  I had to be back downtown for a few hours, plus I simply needed to get work done.  I've been up late every night this week trying to catch up on work that i have not been getting done because I've not had childcare this week.  

Unfortunately, what this experience has taught me is I do not have a good back-up care plan in place for Ella. I contacted at least half-a-dozen people.  Everyone has plans/a life.  Even if there was an option to drop her off somewhere, I can't just take her somewhere because 1) she wont eat for anyone but me  2) since she wont eat the caregiver has to know/be willing to use her g-tube. Since I don't have anyone on my list that fits these needs the alternative is the caregiver needs to be in my house, since I work from the house (with a few exceptions) and can jump out of my office to feed/tube Ella when necessary.

I ended up having a not-yet-well Nanny J come back on Wednesday to keep Ella because there was no other option.  I had to work, I had to be downtown for a few hours as well.  Sometimes in your work there is more pressure than normal to perform... this is where I am with work right now.  I need to work, to focus on work.  And taking a risk with a not-yet-well Nanny J was the risk I had to take.

So far Ella and I are okay.  Let's hope/pray we stay healthy.

Thankfully, Nanny J seemed much better today!

So... I have just added a new item to my super-long priority list (which doesn't include blogging but I do this when I can because it is a needed outlet) is to make up a flyer to send to the local nursing schools.  My intent is to have a list at least 15 people long (vetted) who I can call in a pinch for back up care... one after the other until I find someone who is available to help.

In the meantime, my house is a wreck, I have not cooked in a week, laundry is piled up and I'm behind on EVERYTHING.  There has been no time for anything this week except for work & Ella - and work suffered. 

This has been one of those tough SMC weeks... I knew what I was getting into and I love everything about it... but I have been extremely challenged due to the circumstances of lack of childcare this week.

Tuesday, June 18, 2013

Summer Bucket List (aka Ella & Mommy's Summer of Fun)

About a month ago I saw the 'summer bucket list' blog posts crop up in various blogs I follow.  At first I dismissed it, thinking that it didn't apply to Ella and me given her age and her developmental delays.  BUT... the more I thought about it, the more I realized that it is PERFECT for us!!  I signed right up and started making a list.  

We have our own 'rules'... (if there are official rules I've not taken the time to figure out/read them... we've made this our own)

1.  "Summer" is a relative term. Our list really encompasses our freedom from RSV isolation season.  
Ella spent her first YEAR isolated from the world.  There is a good chance (doctor consults pending) that she will have to have some level of RSV isolation next season as well.  Summer is not simply June - July - August....  it is April through October...  from doors open to doors closed for our lives.

2.  Activities on the Bucket List Can NOT be therapy related
Ella already gets 5 - 6 hours of therapy a week, plus homework daily.  No therapy goals or events are to be a part of our Summer of Fun activities.  

3.  It is okay if we don't do EVERYTHING on the list. 
In particular, as much as I want to take a trip to Florida I just don't know if that one is feasible.  I WANT for us to get down there to visit family and friends (September/October-ish, not July/August - I'm not crazy!).  Riding a horse is dependent on our trip to Florida, my niece is an accomplished rider and has access to a very gentile pony.

4.  We can Add to the List as we desire.  Any suggestions?

Our 2013 Summer Bucket List
  • Go to Discovery Place Kids
  • Go to a Splash/Fountain Park (done)
  • Take a trip to the Mountains (done)
  • Go to the zoo (done)
  • Go out for Brunch
  • Play in the Baby Pool at Home (started, needs some work)
  • Have new Professional Photos made
  • Swim in an Outdoor Pool
  • Go to the Nature Museum
  • Take a trip to the beach/Florida
  • Take swim lessons (in process)
  • Have a Picnic at the park
  • Build a Fort
  • Go on a Hay Ride
  • Ride a Horse
  • Host Supper Club
  • Have Play Dates with...
    • SMC Families (done)
    • MicroPreemies
    • Others

Thursday, June 6, 2013

Goals (and Omegaven on Rock Center Friday)

A couple of weeks before Ella was discharged from NICU the Early Childhood Intervention (ECI) Coordinator met me at Ella's bedside to assess her and to discuss/write goals.  Ironically when she first assessed Ella back in September she said she didn't qualify for Physical or Occupational Therapy because she had not missed her developmental milestones (yet).  

Given that Ella was at such a high risk for having developmental delays that wasn't good enough for me.  I worked with the NICU social worker to get therapy arranged for home.  But I digress.  

When the ECI coordinator asked me what goals I wanted to write up for Ella I really had a hard time with that.  What are my goals for her?  To be healthy and develop just like any other child!  Other parents don't have to write this stuff down as goals.  

  • During mealtime, Ella will take all of her food by mouth
  • During playtime, Ella will show interest in her toys
  • During playtime, Ella will enjoy participating with others and independently reach & play with her toys

Much of this stems from my ongoing denial about Ella's special needs, since that day in the Emergency Room when the doctors & nurses tried to reassure me that having a baby at 25 weeks, usually the worst case is they have Cerebral Palsey.  Well, first of all, I was too drugged up and didn't have my phone or computer to research more about this wonderful worst case scenario they were trying to sell me on for the baby I had expected to be full-term and healthy until that moment.  More about this when I finally write Ella's birth story in detail, another post I have not been able to bring myself to write yet (either due to time or emotional capacity to deal with it).

Most parents can't imagine writing such goals for their baby as I listed above.  I mean, that just comes naturally.  People don't really think about it consciously, I don't imagine (I can't say for sure since I don't have another frame of reference).  Of course parents support their children in learning to do these things and celebrate their accomplishments, but they don't have to consciously think of these things as goals and write them down.

And work with therapists multiple times a week to get there...

Ella has a very good team of therapists assembled now.  We had to weed through a couple for certain specialties but I like her team now.  Her PT & OT have been with us since we were discharged in September.  

This might be a good time to clear the air.  

Therapy is not fun.  It is work.  E

lla used to cry through all of her sessions.  After her line was removed she began to tolerate therapy more, but still had a limit of how much she could take.  

And at 14 months old (this Sunday), she still dislikes tummy time.  She cries through commando crawling.  Sidelying is a form of torture.  

But she is making progress.  It is slow progress.  I am so proud of her, she works so hard every day!  

I came to a point of acceptance some time ago that I am happy with her doing things in her own time because I know she will get there and that it's the right way for her.  She still has to work hard for it, but she can get there in her own time.

That doesn't mean it's not hard for mommy too sometimes.  I feel it more now that we are able to get out into the world and socialize with others.  

At a playdate I'm the one who still has to hold my 14 month old on my lap while younger kids are sitting on their own, crawling and running around.  At Kindermusic or Swim Lesson, my daughter is the one who is over-stimulated and clinging to me, crying through the session.  

And why can't I get through making a matter-of-fact statement to my Financial Advisor that we need to take into account in planning that my daughter may have long-term special needs without feeling that shimmer of tears gloss over my eyes?

I am so happy!  And I am so proud of Ella!  But I do feel occasional pangs of jealousy toward parents who don't have to give these things a second thought.  And that they don't have to write goals for their little ones to eat, reach, grab, show interest in toys, sit independently, crawl, walk, talk... and the many unknowns to come.

Jen, this video is for you... working on sitting independently is NOT fun sometimes.

Rice - sensory play with OT.  And outdoors!  Mommy just wanted to make sure I didn't eat the rice.

Hands & Knees - Hard work.

Hands & knees practice in PT

Grandma watching work on the ball with a PT/OT Co-treatment session

Distraction during PT


It's ironic that at the end of this post I am switching gears to something I am so thankful for in regards to Ella's current state.  You see, as much as I express my feelings of frustration and jealousy above, I know things could have been very different.  If it were not for this wonderful drug Ella may not have survived or would likely be doing extremely poorly and on a transplant list for a new liver and intestines.  

Last June, Ella's direct biliruben levels had peaked at 11.1 (normal should be under 0.2), meaning her liver function was being severely compromised due to the IV ongoing nutritional support (TPN). Right before Ella's 2nd surgery her doctors told me about Omegaven.  It is a lipid (fat) made from fish oil rather than plant oil that has shown amazing results in babies with liver disfunction.  It is not an FDA approved drug.  Our hospital had used it on occasion for other babies and knew how to file the paperwork.  It took about 3 weeks for FDA approval to come through so they were able to begin administering Omegaven to Ella in late July.  

If you recall, one of the primary reasons we had to wait on discharge from NICU was that since Ella was going home on TPN, paperwork had to be resumitted to the FDA for approval to use it OUTPATIENT.  Oh, the hoops that have to be jumped through...  well, after 2 weeks of waiting for a response from the FDA we learned that the paperwork had been sitting on the wrong desk at the FDA and it was being resubmitted AGAIN to the right area.  At the same time there was an Omegaven shortage and Ella would have to switch back to lipids while the Omegaven was unavailable.  

That's when the NICU doctors and I talked again.  Ella's direct bili had dropped so significantly to 1.7, she really didn't need lipids (fats) at all, not the standard lipids or Omegaven.  While Omegaven at home could have benefited her, the fact that she didn't need regular lipids anymore meant that it wouldn't be inflicting additional damage on her liver.  This is when we put in place the very sudden discharge plan for Ella.  Yay!

Ella's direct bili continued to drop after coming home on TPN without lipids.  By December she was under the normal threshhold!  And I credit Omegaven for that... and so much more.

Check out the story on the controversy of why the FDA has not approved Omegaven on Rock Center tomorrow night.  I am so thankful Ella was able to get it, hoops and all.  Like Dr. Puder says, how can you tell a parent so desperate to save their child that they may be in the "control" group of the study and not get the drug that has already proven to help so many?

Thursday, May 30, 2013

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.


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.


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!

Wednesday, May 29, 2013

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
Diaper Kit Ensure it is stocked
~Wipes Ensure wipes are stocked
~Diaper Cream
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
~Clorox Wipes
~Hand Sanitizer/Wipes
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
Medicine/Syringes If applicable
Overnight Trips (includes everything from Outings/Day Trips)
Item to Bring Notes
Bottle Warmer
Bottle Brush
Bottle Washing Bucket
Elecare Can(s)
Filtered Water At destination
Formula Mixing Pitcher
Baby Food Jar & Cereal
Food container
Pump Supplies
~Backpack Will need a hanger (at destination)
~Pump Bags
~Pump w/ Power Cord Bring Clamp for pump as needed
~Paper Towel Roll
~Ice Pack(s)
Tummy Drops
Prilosec Refrigerate
Antibiotic If Applicable (Refrigerate)
Infant Advil Just in case
Syringes CVS syringe, tiny syringe, antibiotic syringe, Advil syringe
Sheet Savers
Pack & Play Sheet
White Noise machine
Musical Seahorse
Furry Guy The paci with the monkey attached

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.

Friday, May 17, 2013

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?

Thursday, May 16, 2013

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.