Milestones

In the past month or so Eliza and I have hit another few milestones. Six years since her due date, six years since she left the NICU and six years since I realized she would not have your typical childhood. But there are other milestones, not as easily measured. After almost 6 years of feeding therapy, Eliza will have her last feeding therapy visit at the end of August. The decision was a hard one to make, since Eliza has made progress since starting with this therapist three years ago, and frankly this is the only feeding therapist Eliza made real progress with over the years. I've had to come to this decision for two reasons. Eliza's school is moving in the fall and while it is not a far move, given the uncertainty of public transportation in NYC, it makes it physically impossible for me to work, pick her up from after school and get her to feeding therapy at the height of rush hour without the benefit of a teleport machine. There are also financial considerations since her feeding therapy, which is very costly, is not covered by either insurance or CSE (the Committee on Special Education). Since all of Eliza's other therapies (OT, Speech and PT) occur during the school day, I can work full time and pick up Eliza from after school when I get out of work. So starting in September, we'll be working on feeding on our own. Since we have breakfast and dinner together, I can still reinforce what we've both learned in feeding therapy. Eliza's health para at school is also on board with many of the protocols surrounding meal time and has been a great help to Eliza while at school. It is odd though to think that after six years of sitting on uncomfortable plastic chairs waiting for Eliza's various therapies to end, that I'll actually miss those plastic chairs.

I think what bothers me most about having to make this decision is that I would not necessarily have to make this decision if I wasn't a single parent who has to work full time. While I am sure many single mothers go through periods of guilt, for lack of a better word, about whether they have made the right decision to raise a child alone, it is particularly difficult when you have a special needs child and have to work full time. Some single moms I know are fortunate to have great family support, but that's not the case for Eliza and me. Our family support comes from my mom. But while my mom is pretty able bodied, she is 89 and lives 60 miles away. She is a wonderful Nana, but is not able to be a care giver to Eliza for more than an afternoon. And that's what she should be to Eliza, a really awesome Nana.

I think the other milestone that I have reached is an emotional one. I am tired. Very tired. I am tired of having to act like Eliza is just a typical kid with no struggles for the benefit of others because it makes them uncomfortable if I talk about Eliza's issues. I am tired of trying to hide how painful it is to watch Eliza struggle with things that come so easily to typical children just to make everyone else feel better about themselves. I am tired of having people say "but she's just so adorable, she'll be fine" because the people who say this don't know jack about raising a special needs child, they have no crystal ball, have never bothered to spend more than an hour with her and the last time I checked "adorableness" isn't necessarily something that will help you lead a happy and productive life. These people don't see Eliza struggle with reading, math and writing. I am tired of people seeing Eliza eat one-half of one mini pancake and saying "see she does eat, what are you talking about?" Try to have your kid live on that "meal" for a month and give me a call then and let me know how much fun that was. These generally are the same people who will tell me they know what it is like because little Sally or Billy only eats 27 kinds of food. I am tired of people who assume that because Eliza is a wonderful artist that this means that she actually has the fine motor skills to write and then having to explain over and over that these are two entirely different skill sets. I'm tired of the jackasses who think that my kid is lazy because she has weak muscle tone and doesn't have the stamina to keep up with typical kids. I'm tired of people telling me how tall Eliza is and then having to tell them she is 6 and not 3 and getting the response of "Oh." I'm tired of people who think it is OK to chastise my child because she is not sitting quietly and acting like an adult. And I am really, really tired of people telling me I need to take some time for myself. If you want me to do that, then feel free to let me know when you'll come watch Eliza, since I'm pretty sure leaving a 6 year old home alone is a pretty poor idea. The list goes on, but I'll spare you all.

So to celebrate my overall tiredness, I'm paring down. Paring down on contact with the people who cause this tiredness and spending more time with people who bring joy and happiness to Eliza, and to me and to whom we bring joy and happiness. Life is just to short for Eliza and me to spend an inordinate amount of time with people who are never, ever going to "get" us and who are just going to wear us down. We have been blessed with many kind and wonderful friends and family, far and wide, and I think it is time to focus on those relationships.

How to Get Over Post-NICU GAP

The best cure for post-NICU Germ-A-Phobia ("GAP") is a hot summer day in New York City.  With 95 degree temperatures your natural inclination is to head to water ... any water.  Now some of our citizens have beach homes and others have the stamina to take the train or make the drive to one of our public beaches.  If you have neither the real estate nor the sheer mental strength to tackle the commute to a beach, you go to Washington Square ... Fountain.  Yup, you let your kid frolic in a giant New York City fountain, which likely has no filtration system, with 50 or so strangers.

But while you pack up your Purell and put away your Clorox wipes, take a look around and you'll see that there are young lovers enjoying the cool fountain (OK, well it is more likely they met two minutes earlier),

and toddlers (seemingly unaccompanied by adults) enjoying the fountain.  The best part of the fountain though is that you can run around endlessly with one of your best friends and never have to worry about wandering into the deep end.

And history tells us that we are not the first intrepid souls heading into the fountain.  The bathing suits have changed and we no longer throw people head long into the 2 foot fountain because we are far more safety conscious (look closely at the old photo below), but the enjoyment is the same.

After cooling off, Washington Square offers an endless parade of entertainment,

which can serve as inspiration for a certain six year old to try her hand at acrobatics.

And when it is time to leave the cool water of the fountain, there are always water balloons.... endless water balloons on a hot summer day.

Can They Remember?

Eliza knows that she was born early because I got sick and she needed to stay in the hospital to grow bigger. Although I've been talked with Eliza about being born early, I've not gone into any further detail than that.  Eliza will tell people that first she was a "tiny baby" and had to stay in the hospital to grow and that she was a "baby" when she came home.  Occasionally she'll ask something like was it winter when she was a "tiny baby and summer when she was a 'baby" but has never asked for much more than that.  She has visited the NICU many times and has seen an isolette and knows that is where she stayed when she was a "tiny baby."

A few weeks back Eliza and I were driving to see a friend and out of the blue she asked me "why did the doctor have to fix me?" So I told her no one ever had to fix her (and it is not something I've ever said). She persisted and very insistently said that she was "broken" when she a "tiny baby" and that she had to be fixed. I told her she had never been "broken" and never needed to be "fixed."  But, persistent child that she is, said she told me she "was broken and had to be fixed with lots and lots of needles and the doctor hurt her." We talked for a bit and I told her that needles were for vaccinations to keep germs away, but she said those were the "big" needles and not the "little" needles she needed to get "fixed." So we talked a bit more and she described the doctor that she had given her the "little" needles.  The really odd, and almost disturbing thing, is that there is only one out of all of her doctors (about 8 of them) that remotely fits the description she gave, and it was a pretty accurate description.  The doctor she described was one of her neonatologists. Eliza has seen this doctor maybe a dozen times post NICU but never in a medical setting nor has he ever treated her outside of the NICU.

My rational brain says there is no way she could remember any of the NICU, but the irrational side is saying "huh?" I wouldn't have thought too much more about this, but then Eliza started waking up periodically in the middle of the night crying saying that the needles hurt her. I've asked her again if she meant the needles that her pediatrician gives her and explained that these are vaccinations to keep us healthy, but she insists those are the "big" needles and that the "little needles" are the ones that hurt and which she needed when she was broken.

So of course this sent me to "the Google" (as my mother calls it) to see what I could find about retained infant memories.  Some interesting things show up.  There are a lot of happy little articles about infants remembering music, voices and flavors they were exposed to while in utero and in infancy. Then there are a handful of articles about men who seemingly remember pain from circumcision. And last but not least are the articles that are a bit more scholarly which talk about implicit and explicit memories and the development of each. Traumatic and painful events in the first two years of life are dismissed on the assumption that children don't remember anything before the age of two.  This is partly true since explicit memory (conscious memory, the ability to verbalize the event) apparently is developed up until about age 3. But the implicit memory is there from birth (or arguably earlier if you want to give credence to the idea that children can remember sounds and flavors they were exposed to in utero). These articles suggest that the more traumatic the event in the early years of life, the more likely the memory of that event will, for lack of a better description, cross over into some form of explicit memory. Some articles also discuss the effects of traumatic early implicit memories on brain development. I wasn't able to locate any articles specifically studying infants with long term, invasive NICU stays, but would be interested in reading anything that anyone comes across.

If Eliza does remember something from the NICU, I hope that all of the good memories she has formed since then outweigh those painful memories.

Kindergarten Art

Eliza's school has a fabulous art teacher.  Eliza learns about different artists, their techniques, materials used and how to apply those techniques and materials.  This week there was an art show at Eliza's school and the children's work was just wonderful to see.  Below are a few samples of Eliza's work.

Pencil sketch of her sneaker:

Pastel and rubbing of a fish:

Water color of Bosley her cat:

Still life collage (fruit and bowl on a table):

Tree Mosaic:

Mixed media:

Cow with paper weaving:

Oil pastel sea shell and sea fan:

 Fabric self-portrait:

Papa in water color:

The portrait of my Dad, Eliza's Papa, is interesting since he passed away before Eliza turned three.  Anyone who knew my Dad would have to admit there is a striking resemblance to him :)  We have a photo at home of my Dad wearing a green shirt holding Eliza, so I am guessing this is why he has a green shirt in the painting.

Then again, Eliza seems to have an uncanny memory for things I would never have guessed she could have remembered ... but that my friends is the topic of a whole other post.

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.

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.

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.