Christmas in the City

Rumor has it there is another storm heading our way this week, so with any luck we'll still have a white Christmas instead of a slushy Christmas.

Eliza and I were up and out early today to enjoy the snow. Eliza is quite the fan of snow and I am hoping that by next year she can start ski lessons (despite her recent dire PT evaluations, Eliza does have great balance, so skiing may be just the thing for her).









Eliza also enjoyed sledding, but alas there are no photos since as a single parent who has to ride the sled with her, I just don't have enough arms to steer the sled and photograph us at the same time. So you are left to your imaginations.

Last week during our successful visit to Santa, Peter and I also took Eliza to see the Rockefeller Christmas Tree. Eliza was quite thrilled with the lights and the crowd was not too oppressive. Eliza thoroughly enjoys her time with Peter and I think our Christmas tradition of visiting Santa together is one we will continue for a long time to come.

Santa, Take Three

Notice anything different? Sitting and smiling!



Peter and I looked pretty thrilled too:




But part of me is a bit sad that the usual shenanigans are a thing of the past. Then again, there is always next year!

Resting?

I know it seems as if I been on a blog-a-palooza here lately, what with the visits to Santa, Crappy Lung Syndrome and all. I cannot help but add yet another post this week.

I am sure three-quarters of American households have tuned into TLC, "The Learning Channel" at some point in the past few years. TLC currently has a reality show that I believe started out with the title "16 and Counting" and progressed to "18 and Counting," as Michelle Duggar, the matriarch of the clan, had ever more children. The title can now officially be called "19 and Counting" since Mrs. Duggar has now given birth to her 19th child.

This child however was born at 25 or 26 weeks (depending upon who does the math) and weighed 1 pound 6 ounces. Your basic "Eliza-size." I am sure it was not the birth that TLC was hoping for.

The Duggar family spokesperson reported that:

Josie Brooklyn Duggar checked in at 6:27 p.m. She weighed 1 pound, 6 ounces and was reported to be resting in the hospital’s neonatal intensive care unit. A family spokesman told People magazine that the infant was expected to be fine.

The TLC spokesperson said:

“The most important thing right now is for mom and baby Josie to get as much rest as possible,” a TLC spokesman said in a statement issued to People.

You can read all about it here.

For those of you not familiar with a Level III NICU (and I do so wish you never have to become acquainted with one) there is nothing "restful" about it.

The baby is not "resting" in the NICU as one would rest after say a long hard day of work or some minor out patient surgery.

The baby likely:

1. is on some form of mechanical ventilation
2. is under Billi lights
3. is attached to a pulse oximeter
4. is on TPN for nutrition
5. has multiple umbilical lines (a/k/a IVs in her belly button)
6. is receiving almost no human touch because her skin is so fragile
7. has a PICC line
8. is on a multitude of medications that you will likely never need
9. has a half dozen or more heel sticks a day for blood gas studies
11. is in an isolette which is as loud as a wind tunnel
12. needs external heat and humidity since she cannot maintain her body temperature
13. has 14 to 20 invasive and painful procedures a day


... dare I go on. Does any of this sound "RESTFUL?"

This baby is at risk for:

1. IVH
2. ROP
3. RDS
4. BPD
5. CLD
6. AOP
7. GERD
8. NEC
9. PDA
10. PHT
11. PIE
12. sepsis

If the family spokesperson and the TLC representative cannot translate this alphabet soup of extreme prematurity then they should not report that the baby is "resting" and will be "fine." It is beyond disingenuous to report that this baby will be "fine" when the baby has not even survived its first few days in the NICU.

It is irresponsible. It is dismissive of the struggle to live that Eliza and every other micropreemie goes through each and every day.

I have no particular gripe with the Duggars. They have chosen to live their lives in the public eye with cameras in their home (in exchange for a hefty paycheck) not unlike many other reality TV families. Do I think this is they way children should grow up? No. But it is their choice.

However, having made their choice to live in the public eye and hold their family out as an example to society, then they have the moral responsibility to accurately report what the life of a 25 or 26 weeker is like and not to gloss over the bleak moments and the moments of pain and despair that every parent of every micro preemie experiences. They have a responsibility to not diminish the struggle to survive each and every minute that every micropreemie struggles with each and every day.

So Duggars, you have my empathy and I do wish for your sakes you had not joined this club.

Because you have joined this elite club of micropreemie parents and live your lives in the public eye, you have a responsibility to accurately report the life of your child.

Oh and to the TLC spokesperson ... do your homework before reporting about that which you do not know.

The Tree(s) of Life

Inquiring minds want to know "why does Eliza cough so much and have such frequent respiratory problems?" Well, maybe not all inquiring minds want to know, but based upon my last 30 emails and a few calls, at least a few people want to know.

Eliza missed that period of development known as "the last trimester." This trimester may not seem so meaningful to those of you who had one, but there is a ton of stuff that goes on in those last few months of gestation. The lungs in particular are very underdeveloped (or "crappy" in medical terms) until pretty close to the 38 to 40 week benchmark that we all aim for. (Note to those of you who are "bored" with being pregnant that last month, you may want to rethink that early delivery).

Here are some handy diagrams of lung development (although I am reasonably sure no lungs are this particular shade of magenta):





When you are born in that highlighted section (24 to 35 weeks) you often need one of these to breathe for you:



While this dandy machine (a ventilator) can breathe for you, in doing so it tends to damage and destroy the little lung tissue your tiny 25 week lungs had to begin with. Kind of a double-edged sword, but my vote goes with the ventilator, since the other option is, well... you can see where that would lead.

After the ventilator, the usual progress is to wean to CPAP:



Yes, Eliza looks like she might be going scuba diving any minute.

After CPAP you try to wean the baby to a nasal cannula:



This progression is all well and good, but you are still stuck with "Crappy Lung Syndrome." OK so I made that name up, but it is just as good as the real name: Chronic Lung Disease. CLS, as I call it, means you spend a lot of time using one of these to administer medications to help you and your crappy lungs breathe.



If you are familiar with Eliza, you know she would never sit like the lovely girl in the photo, so instead we resort to one of these methods for delivering her medications:

The Ionic (a/k/a silent) nebulizer:



Or the Aerochamber:



By all accounts, medical and anecdotal, one can grow out of CLS by the time one is middle childhood (say 7 to 12 years old). Ridding the body of Crappy Lung Syndrome is a process, kind of a long process in some cases. With each new lung infection, or bout of bronchiolitis, the new lung tissue is assaulted and damaged. The idea is to keep the new tissue as healthy as you can until the new, healthy lung tissue proportionately out numbers the crappy lung tissue. So if I ask you to stay away when you are sick, or not bring your sick child over to visit, it really isn't anything personal.

And that folks is today's layman's lesson in Pediatric Pulmonology.

And the P.S. to today's lesson: As of January 1, 2010 United HealthCare Oxford will no long cover the medication that Eliza uses in her Aerochamber and nebulizer. These people really need to spend some time in the NICU and PICU before they make these decisions.

Santa, Take Two

Santa, Take One

Notice anything missing from this photo? Look closely, very closely ... why yes! There is no Eliza in this photo.

Eliza's preschool ventured to Santa Land today for the Holiday Puppet Show, to see the trains and to visit with the big man himself. Not only would Eliza not sit on Santa's lap, but she refused to even get in the group photo of her class sitting angelically at Santa's feet.

For those of you just joining us, here is the progression of Eliza's relationship with Santa:

2006:



2007:



2008:



Notice a downward trend here? This does not bode well for future visits to Santa ....

Review ...

The end of the year always calls for a review of where our lives are. Although the year is not quite over, I thought I would get a head start on things.

Eliza has been home from the NICU for 1,258 days. In those 1,258 days, Eliza has gone from needing supplemental oxygen 24 hours a day, to running with abandon through Central Park. Eliza previously would gag at the sight of play-doh and now will gingerly play with it. A year ago Eliza wouldn't even touch paint and, while she still insists on using a brush and would never consider finger painting, she no longer cries if paint gets on her, but instead simply asks me to clean her hands. A year ago Eliza barely had two words strung together and today she can recite her address and will let you know if you incorrectly refer to the Central Park alpacas as llamas (and really you should know the difference). For well over two years Eliza vomited 10 to 15 times a day, yet today I can't really recall the last time that she vomited. Eliza can count to thirty in English, and to twenty in Spanish. She knows her alphabet and can name most colors in English and Spanish.

This week, for the first time ever at three and a half years old, Eliza engaged in real pretend play. This is something that most children do at 18 to 24 months, if not sooner. Eliza dug out her Backyardigan dolls, which had sat dormant in her toy box for two years, and sat them down for a tea party. This week, Eliza finally took out her pretend wooden "birthday" cake and shared the cake with her Backyardigan dolls. And tonight, for the first time ever, Eliza went to her doll house, took out two dolls and said "we're friends." These may seem like silly, small things, that a parent of an average child would simply smile at and think were "cute." For the parent of a developmentally delayed child, seeing that child engage in pretend play is cause for joy and celebration, and even relief at this sign of normalcy.

Eliza still gets all of her nutrition from a bottle (much to the chagrin of complete strangers and family members alike), has only slept through the night for 46 out of 1258 nights, is showing no interest in toilet training, is plagued with chronic coughs, sensory issues and speech delays. Eliza still can smell a doctor a mile away, making the dozens of visits each year very difficult, but she will now willingly let a stethoscope near her. Despite these and other issues, Eliza is making great strides in her speech, physical and occupational therapies. She has made these great strides with the help of all of her Early Intervention therapists and her wonderful teachers, therapists and aides at Gramercy School.

I am, and probably always will be, a die hard New Yorker. But New York City has served Eliza well, from her great care at Lenox Hill Hospital to her wonderful YAI preschool, Gramercy School. For all of this, I am grateful.