Creative Begging... ummm ... Fund Raising

I am sure there are very few people left in the Western Hemisphere who don't know that Eliza and I are walking in the March for Babies this year to raise money for the March of Dimes.

I could give you a long drawn out speech about the research the March of Dimes has funded and how it helped Eliza survive. But I'll just beg/fund raise in pictures:

Preemie lungs look like the bottom left picture compared to full term lungs seen in the bottom right picture:



In order to work (a/k/a "breathe" even with a ventilator) they need something called surfactant. Full term babies make surfactant on their own. Surfactant helps a baby's alveoli to open and stay open (a/k/a "breathe"). Babies born at an early gestation need artificial surfactant since their bodies are too young to make it on their own:



Thanks to research funded by the March of Dimes, some really smarty pants folks figured out how to make artificial surfactant. It is admittedly made from some very unappetizing things:

Curosurf is produced from minced pig lungs; Alveofact is a compound obtained from bovine lung lavage and Survanta is prepared with minced bovine lungs. (Right about now I am hoping that you are so thankful I haven't posted any photos of those images that you are reaching into your wallet).

Surfactant allows a little one pound girl who looked like this struggling to survive:



To grow into this happy little girl four years later:



So what do you day, how about donating a buck or two to Eliza Grace's March for Babies?

Creative Begging... ummm ... Fund Raising

I am sure there are very few people left in the Western Hemisphere who don't know that Eliza and I are walking in the March for Babies this year to raise money for the March of Dimes.

I could give you a long drawn out speech about the research the March of Dimes has funded and how it helped Eliza survive. But I'll just beg/fund raise in pictures:

Preemie lungs look like the bottom left picture compared to full term lungs seen in the bottom right picture:



In order to work (a/k/a "breathe" even with a ventilator) they need something called surfactant. Full term babies make surfactant on their own. Surfactant helps a baby's alveoli to open and stay open (a/k/a "breathe"). Babies born at an early gestation need artificial surfactant since their bodies are too young to make it on their own:



Thanks to research funded by the March of Dimes, some really smarty pants folks figured out how to make artificial surfactant. It is admittedly made from some very unappetizing things:

Curosurf is produced from minced pig lungs; Alveofact is a compound obtained from bovine lung lavage and Survanta is prepared with minced bovine lungs. (Right about now I am hoping that you are so thankful I haven't posted any photos of those images that you are reaching into your wallet).

Surfactant allows a little one pound girl who looked like this struggling to survive:



To grow into this happy little girl four years later:



So what do you day, how about donating a buck or two to Eliza Grace's March for Babies?

"Severe." Kind of Harsh, No?

Another evaluator has waltzed into our lives and tangoed her way out just as quickly (which I expected since I knew she was only going to evaluate Eliza's feeding skills). Lovely woman, seemed to be quite knowledgeable. In her wake is a tidy report summing up the state of Eliza's feeding. Of course the only word I see on the whole flipping page is "severe." Severe dysphagia, a very fancy way of saying "can't chew or swallow".

Now lest you think I hadn't notice this little problem before, you need only read about a third of my blog posts since Eliza's not eating is an endless source of angst for me. Eliza's dysphagia in the oral phase of eating has gone from mild to moderate to severe. Not that it has gotten any worse by objective standards, but the peers to whom Eliza is compared have moved waaaayyyy beyond being able to eat a cheese puff. So were I to compare her to, oh say a 6 month old, Eliza's dysphagia would be mild at worst. Not so when compared to even a 3 year old! The comparison to even the most inept 3 year old nosher puts Eliza in the "severe" category.

Uggh. I don't like "severe." Nope.

Oh, and to the next person who witnesses Eliza eat said cheese puff and says to me "but she eats," I will be forced to smite you. :)

2010 March for Babies

Eliza Grace Team, 2010 March for Babies



Eliza Grace was born at 26 weeks and 4 days. She weighed 1 pound 4 ounces and was 11.5 inches long. That's about the size of your average small bottle of water. Eliza Grace's early birth was brought on after I developed pre-eclampsia and HELLP Syndrome.

Eliza Grace was in the Lenox Hill Hospital NICU for 100 days. During that time she was diagnosed with and treated for RDS, BPD, ROP, AOP, PDA, NEC, multiple episodes of sepsis and an array of other issues. Eliza Grace was so fragile I could not hold her until she was 25 days old.

Thanks to the wonderful care she received at Lenox Hill Hospital, Eliza Grace is a happy and healthy preschooler today.

Eliza Grace has not however walked away from her extreme prematurity unscathed. She has had over 3,000 hours of various therapies, including speech, feeding, physical and occupational therapies. She now attends a special ed preschool and loves it. Eliza works very, very hard to achieve the typical childhood milestones, ones that most parents take for granted, like rolling over or eating a cracker.

Eliza's early birth has taught me to take nothing for granted in life. No child should miss an entire trimester in utero. No child should have to live in an isolette (or "the plastic box" as I call it). No parent should have to watch a machine breathe for their child and no parent should have to wonder day in and day out if their child will survive to the next day.

Every year, half a million babies in the U.S. are born prematurely. Premature birth is the leading cause of newborn death and many life long disabilities. The funds raised in the March for Babies support research to help save and improve babies' lives. The March of Dimes also supports programs to provide NICU families with the tools they need to cope while in the NICU.

Thanks to everyone's generosity over the past three years, the Eliza Grace Team has raised $10,000. This year we have set our team goal at $5,000, which would bring our 4 year total to $15,000.

Please support Eliza Grace in the March for Babies. Your donation would be greatly appreciated.

If you would like to become a team member you can email me at elizagracesmom@yahoo.com for information on how to join the team and how to raise funds for the March for Babies.

Thanks for your support,

Anne and Eliza Grace

"I'm OK!!!"

You've heard of those birds that fly straight into windows without even batting a little bird eye?



Eliza is trying to join the flock.

Yesterday we were the American Museum of Natural History, a fun place where we go almost every week.




The newest wing is the Rose Center for Earth and Space. There is a LOT of glass.



Even the gift shop has spotlessly clean glass walls. So clean that a certain bat out of hell almost-four-year-old didn't quite see the window as she ran for joy at the prospect of a day at the museum. Eliza slammed into the glass wall so hard it shook and there were audible gasps from everyone within 100 feet.

Not being one to launch into unnecessary hysterics, I paused and waited for Eliza's reaction as she bounced off the glass. She grabbed her face and started screaming "I hurt!, I hurt!" I did a quick triage and saw no red marks on her forehead, accounted for all of her pearly whites, checked her face and head for bleeding and checked her mouth for a split lip. All was well. Until:



Yup, that tiny nose turned into a gushing geyser of blood. But calm and some gentle pressure and an entire package of wipes prevailed and about ten minutes later Eliza was back to her old self, running headlong to the elephants yelling "I'm OK. I'm OK!"

Things got a kind of messy an hour or two later when Eliza let out a sinus clearing sneeze, which pretty well emptied the Hall of Biodiversity from onlookers, but that too was cleared up with only a handful of wipes. I was concerned that she might have broken her nose, but given the lack of swelling, the fact that she let me touch it and her pretty focused digging for boogers later that evening, I am assured by medical professionals in the know that it is very, very doubtful anything is broken. And here is the proof that the nose is just dandy:

A Little Bling

Eliza has finally added some bling to her day. Banilla Bling that is.

Most kids' toothpaste is made with those same foul tasting cherry/grape/bubble gum flavors that the makers of Tylenol think kids, all kids, just love. Not so here at Casa Richter. Eliza has a very, very discerning palate and would never lower her standards to allow such pedestrian flavors to touch her palate. OK, so that is a nice way of saying Eliza has a feeding disorder that extends to not permitting me to brush her teeth (yes of course I could brush her teeth if I hired two off duty cops to hold her down for me, but it really wouldn't be worth the emotional trauma).

But Dr. Best, Eliza's beloved dentist, brought some Banilla Bling to our lives. This stuff is awesome. It tastes like vanilla frosting, so who wouldn't want to brush their teeth. It is far tastier than the dreck that Oral B has been pawning off as a "flavored" toothpaste.

So a new record has been set here: We have now had ONE WEEK of tooth brushing. Not too impressive considering Eliza has been with us for over 200 weeks, but hey, it is a start:

Banilla Bling:



Plus a little Elmo:



Equals some pearly whites:

The Last of the Mohicans

An informal survey of Eliza's friends from the world of the non-eaters has lead me to the conclusion that this little band of brothers and sisters, about 20 strong that we know from therapy and support groups, has dwindled to:



For sure the other kids still have feeding problems, but they have moved from non-eater to picky-eater. In case you are not aware of the subtle difference, let me tell you I would gnaw my own arm off if Eliza moved into the realm of picky-eater. Of course you are thinking "oh Anne, have you had your head under a rock, because surely you would have noticed that Camp Non-eater was pretty quiet lately." Alas, it seems my head was firmly buried in a stone quarry. What got me to just about jump out of the quarry was a post I ran across in cyber world with a list of foods for kids who had "feeding" issues. The foods included refried beans, pan fried broccoli, tofu, snap peas, waffles ... dare I go on? Are you flipping kidding me? If Eliza ate only refried beans I would be doing the happy dance until the next millennium.

Kind of sad to think that my perspective has been changed by one spoonful of refried beans.

Moving to France seems more and more like a good idea. I can at least go to social functions with Eliza, her bottle and a mini cupcake for another couple of years without getting the hairy eyeball. Right?