Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Thursday, May 24, 2012

One Size Does Not Fit All

That's the message of RBaby Foundation when it comes to Emergency Departments.

I had never heard of RBaby until a friend posted a link to this Petition on Facebook.  The purpose of the Petition is to improve Pediatric Emergency Care and to insure that EDs are capable of treating pediatric patients.  The story behind RBaby is heartbreaking and I am in awe of the strength of the parents who founded the organization.

If you've ever had to take your child to the ED and didn't have the luxury of a children's hospital (because with so few pediatric hospitals in the US, it truly is luxury) you might have realized early on that the parade of residents and attendings were often winging it when it came to diagnosing and treating your child.  Or, if you are not a frequent flyer in the pediatric medical world, you may have thought that surely this large hospital to which you had taken your child actually had ED doctors who had actual experience in diagnosing and treating children.  Sadly these beliefs may have been wrong.

When Eliza was discharged from the NICU one of the nurse practitioners told me in no uncertain terms that if I needed to take Eliza to the ED, there were certain hospitals I should take her to and ones I should not take her to.  She didn't say this because they "bad" hospitals, in fact they were very, very good, but because they did not have ED staff dedicated pediatrics.

Having spent some quality time in pediatric EDs I have also found that the quality of care depends upon which doctor is assigned to your child.  When Eliza has headed to the ER the first thing that the triage nurse asks if she has any medical issues or significant medical history.  My stock answer begins with "Eliza was born at 26 weeks, weighed a pound, was on a ventilator for 67 days and was in the NICU for 100 days."  I fill in more details, but these basic facts are the first listed on her chart.

During one ED trip, the resident came to see Eliza and asked me "I see your daughter was in the NICU, why was she there?"  So I look at him and say "she was born at 26 weeks, weighed a pound, was on a ventilator for 67 days and was in the NICU for 100 days," even though I know this is right in front of him.  His next question was "yes I see all of this but why was she in the NICU?"  So I rattle off the more detailed reasons for the NICU stay (RDS, BPD, NEC, sepsis to name a few) but he asks me the same thing again and even tells me that I am not answering his question.  Now I must say I did think this was a trick question, so I cautiously offered up that when a child has little to no lung function at birth and weighs a pound they tend to be in the NICU for a while.  When he asked it the third time, I asked to see another doctor, one who actually might know something about pediatrics, prematurity and what the hell a NICU is.  He was quite obstinate and not too pleased that I walked over to the desk and demanded to see an attending.  Luckily the attending seemed to grasp why Eliza was in the NICU and our visit proceeded smoothly (except for the constant stink-eye I got from the dimwitted resident).  Some residents are great, this one, not so much.

During another hospital visit another resident wanted to place an IV in Eliza.  I asked how often he had done this to a 14 pound one year old infant.  He insisted he had placed IVs in "dozens and dozens" of children.  I asked how many times he had put IVs in infants.  He repeated himself (maybe he was related to the resident from the prior visit) and I asked again how many infants.  Finally he admitted that Eliza would be his first infant and I must say, he did seem pretty enthusiastic at the chance.  I declined his offer and demanded that a pediatric nurse with infant experience, the IV team or a NICU nurse come down to place the IV.  A very nice NICU nurse did the honors and had the IV placed on the first try.  This also resulted in resident stink-eye.

On yet another occasion when Eliza was severely dehydrated, and the pediatric ED was a bit crowded, the resident asked if I was comfortable giving Eliza 5 mls of pedialyte by mouth since he didn't think he could get an IV in her and there would be a long wait for someone who could.  I give this one some points for honesty.  But really, you are going to advertise yourself as a pediatric ED with this level of inexperience and tell a parent to wing it with pedialyte for a couple of hours until they can get to you?

My point is that, as a parent, not only do you need to arm yourself with knowledge of which ED to take your child to (assuming you have this luxury of choice), but also put aside any concern about asking questions or offending a doctor by questioning his choices, asking if he's ever done a procedure before (no matter how innocuous looking) and asking for another doctor if your gut tells you the one in front of you is clueless about your child' symptoms or the appropriate treatment.

So now go sign the RBaby Petition.

Wednesday, May 2, 2012

The Lost Tooth

Eliza lost her first tooth today!  

It was hanging on for dear life for a few days now, but today in her after school sports class it finally fell out!



And then it was lost.  It seems that the person (who I shall refer to as the Tooth-Fairy-Non-Believer or TFNB for short) who runs her after school sports class thought the appropriate thing to do was to throw out the tooth.  Seriously.  TFNB, who once lectured me on the risks of childhood obesity (yes, he knows who Eliza is) clearly spends more time at the gym than reading up on childhood rituals.

Eliza accepted my explanation that the all knowing Tooth Fairy had already collected her tooth, but that she still needed to write a note to the Tooth Fairy so the Tooth Fairy would know under which pillow in New York City to leave some money.



The good news is that my kid is a cheapskate and only thinks a tooth is worth 8 quarters!  WooHoo for our family budget!  But to make up for the actually lost tooth, the Tooth Fairy may be sending Eliza some Pokemon swag.



This whole lost tooth thing is clearly more bothersome to me than Eliza.  Let's face it, Eliza and I have missed quite a few typical "firsts."  First held Eliza, not seconds after her birth, but a month late while she was on a ventilator.  First bath?  Not in that cute tub someone gave me at my baby shower, but in a hospital basin when she was 2 months old.  Forget breast feeding.  I first "fed" Eliza by holding a syringe of breast milk into her NG tube.  No big Christening or First Birthday party for us, thanks to crappy lungs and RSV.  The list just goes on.

I just wanted one thing to be a typical, boring old milestone.  

But no, TFNB had to take that away. 

Maybe I'll get lucky and find out he doesn't floss and loses his teeth by the time he is 30.

Monday, April 23, 2012

Another Saba Vacation!

Eliza and I had another fun filled vacation on Saba!  We spent Easter week on Saba which meant Easter egg hunts, egg decorating and brunch on my porch.

Eliza takes her egg hunting pretty seriously and gets her game face on early:


But before the egg hunt, everyone needs to stock up on some brunch.  Scrambling 36 eggs is actually easier than I thought it would be :)


Thanks to the kid's table, the adults can eat in peace and have no fear of a wee one stealing a Mimosa or two.


After the official Easter brunch Eliza and I headed off to the Saba Airport's "Flight Deck" to await the arrival of Otto and his mom Jennifer.


Little did these Winair neophytes realize the wind was in the wrong direction and hence the plane had to land "the wrong way."


But they made it safe and sound, with Jennifer wearing the appropriate look of relief that the 12 minute flight was over.


Otto, like any self-respecting kindergartner clearly felt that stopping at the Immigration desk was only for the adults.


On Monday the Easter bunny was kind enough to make a return visit so Otto could hunt for eggs.  Eliza carried WaddleDee along for an extra edge in egg hunting.


Maya, Eliza's Saba BFF joined us for the second Easter egg hunt and was happy at a chance to gather some candy filled eggs.


The backyard cemetery provides an awesome place to hide eggs!  I am certain my ancestors appreciate the company.


Otto ventured into the banana trees to uncover some of the egg stash.



Maya braved the Bougainvillea to collect some nice chocolate filled eggs.


The kids compared their stash on the cemetery "benches."


And really enjoyed relaxing and laughing on Big Ed's bench.  I am certain my Dad enjoyed the festivities.


We even convinced the kids to do some arts and crafts for Easter and didn't even have to bribe them to do more.


Since it was a pretty hot week and I don't have a pool (I have a cemetery instead) I broke out the hose and chased the kids down.  They decided though to seek the protection of the Elephant Ear leaves, which serve as nice umbrellas in a pinch.


We introduced Otto to the Cove Bay and explained that sooner or later we would take him to a sandy beach.  For city kids though, he and Eliza didn't mind the pebbles at all (their mothers are a different story).




And nothing ends a day of swimming better than a bag of Cheetos in a washed up dinghy.


We did say good-bye to Saba and headed over to St. Maarten.  Our hotel on Divi Little Bay was really lovely with beautiful views.




Otto and Eliza got a chance to test out the surf and the white sand.



I think it is safe to say, they both had a wonderful time.