Almost a year later...

 

 

 

Ten on Tuesday...six months later...

1. When Sarah gets to the heart shaped piece on her puzzle, she puts a hand on her chest and says, “Boom! Boom!”

2. She likes to go to the mall arcade and play “basket-a-ball” with her daddy.

3. Now that we’ve turned her carseats forward, she likes to backseat drive. “Mommy, we go DAT way!” and “Go faster!” She also scolds other cars and trucks for driving too close, “No, no car!!”

4. She’s easy to please with a trip to the “cookie store” aka Publix (kids get a free cookie from the bakery). We no longer buy cookies since we’re in the grocery store 3-5 times a week!

5. She’s STILL freaked about Santa Claus. Before Christmas, we took her to the mall and she admired Santa from afar. She even waved at him, but did NOT want to get closer or talk to him. Fine with me…we spend so much time teaching our kids about “stranger danger” that it seems counter-productive to coerce them to sit in a strange man’s lap. Then
one Wednesday at our weekly library story hour, Santa popped out of a storage room right as we were finishing up. Cue MAJOR freak out. Sarah cried and hid. And now, two months later, she still points at that blasted door and says, “No, no Claus!” Ironically, she had her photo made with her school’s Santa and was perfectly fine.

6. We have eye teeth! Her 1yr molars came in back in May and since
then…nothing. I was really getting concerned about her eye teeth and still wonder if the delay is somehow related to her size. But all of a sudden, ALL FOUR popped up at once! She occasionally complains that her teeth hurt, but I’m inclined to think she just likes the taste of kiddie Ibuprofen and knows that complaint will usually score her medicine.

7. Speaking of her size, Sarah has grown 1.5” since her birthday in July. She has cropped pants that almost fit like they should (as opposed to looking like regular pants)! Granted they’re size 18mos…but hey, it’s a start. We’re waiting patiently for our Endocrinology appointment in June, though I expect the original diagnosis of “idiopathic short stature” (in other words, she’s short and we’re not sure why) will not change.

8. Sarah is considerably smaller than her classmates, but don’t think that her being small makes her a baby. I try to peek in on her class for a few
minutes when I pick her up in the afternoons and one day last week Sarah was watching one of her classmates who was looking out their classroom window. Sarah is too short to see out the window so she marched across the room, picked up a chair, carried it to the window and
voila! She could see! I was so proud! Even when she had to stand in the corner for not getting down when her teacher asked her to.

9. At the urging of her OT, we changed Sarah’s crib to a toddler bed a few days after Christmas. I’d been thinking that as long as she wasn’t trying to climb out of the crib, we should just keep her there. But then in the same breath, I’d ask her preschool teachers to NOT baby her when that’s exactly what I’d been doing. She naps on a cot at school so now she also has the responsibility of sleeping in a bed at home. The transition was seamless and once again, Sarah AND her OT proved me wrong.

10. About Sarah’s OT…I should probably call her Sarah’s FORMER OT. Sarah was officially discharged from ALL therapy in January! We started with her PT within a few weeks of her birth and eventually graduated to OT and Speech last year. Her annual evaluation showed that she no longer presents the required delays to qualify for therapy! We will still be following up with an eval thru our local school system next month – I still don’t think she’ll qualify for services, but it’s being offered so we’re taking advantage of it.

Sarah-isms

1. Sawaah = her name. Best said with a bit of sass!

2. Tew = her age. Generally accompanied by several fingers...rarely two...and it usually looks like some sort of toddler gang sign.

3. Cooler = color. As in, "Mommy! A cooler book!!" The plural "coolers" = crayons.

4. Plato = Mickey Mouse's dog.

5. Nackie = snack. Or "Feed me NOW!"

6. Owwwwww! = the sound a cat makes.

7. Buggie = bug. Sometimes it's scary, other times not. Sometimes it's just a piece of fuzz.

8. Go! = what she yells from the backseat when the car slows down.

9. BooBoo = her knees. She fell MONTHS ago and scraped her knees. They've long since healed, but we're still using multiple bandaids every day.

10. Wock = she wants someone to rock her in her chair. She hasn't let us "wock" her to sleep in a LONG time so we jump as soon as she says it.

Ten on Tuesday

1. We lost our 12yr old dog CiCi on June 10th...six weeks after she was diagnosed with Lymphoma. We'd begun chemotherapy treatments with the hope of buying her (and mainly US) some time, but it just didn't work as we'd planned. CiCi was my first dog. I adopted her when I bought my house and for several years, it was just the two of us. She was my best girl. And while I'm heartbroken that she's gone, I know that she's healed. And I know that I'll see her again one day. Rest well.

2. Three weeks after we lost CiCi, Lily had surgery to repair a ruptured ACL. We'd been thru this twice before with CiCi so we're no strangers to ACL injuries. Lily's knee has been giving her problems for quite some time, but when we returned from vacation she wasn't using that leg at all. We opted to use our regular vet (rather than an orthopedic specialist) and as a result, opted for the lateral suture repair (rather than TPLO that would usually be recommended for a dog her size). Those were choices that we made based on Lily and her behavioral issues...not choices we might have made otherwise. But she's doing quite well and will hopefully get the green light to start a bit of rehab swimming soon.

3. Speaking of vacation, we spent several days in June at the beach with my family. It's the first time that we've all been together...well...EVER if you consider that our nephew Elliot is only 7mo old! We took this opportunity to have some family photos made and were lucky that Stephanie Fisher was willing and able to follow us to Orange Beach. Here lately, I've felt like I'm bleeding money, but wonderful photographs (in particular, wonderful photographs of Sarah)...that's one thing that I will NEVER regret paying for.

You can see the rest of our photos here.

4. Sarah turned TWO YEARS OLD on July 21. I know that only another preemie mom will understand this, but it's so...odd...to celebrate what was one of the scariest days of my life. For a long time I was scared to think about her future...scared to hope that we might have birthdays to celebrate. And now look at her...wow!

5. Sarah's party was last Saturday - we stuck with the pizza party theme from last year and I think everyone had a great time. Once again, we were overwhelmed with the generosity of our family and friends - we have so many great gifts to deliver to St. Vincent's NICU again this year.

6. We had Sarah's two year well baby appointment with her pediatrician today and though I'd been dreading it, it was actually a great appointment. She's 30.5" tall which puts her...well...a half inch or so BELOW the chart. But, it also puts her half an inch too tall for her infant carseat so that's improvement! 23lbs puts her in the 5th percentile for weight for her actual age - the first time she's been on the chart at all for weight. And then there's her head. 75th percentile for her actual age. I've always been told that preemies catch up in head circumference first, weight second and height last. Here's hoping that's true!

7. Because of my concern over Sarah's height, our pediatrician sent us for a wrist x-ray to check Sarah's "bone age." Those of you following Sarah since the beginning might remember that she was diagnosed with rickets (or 'metabolic bone disease' as her neonatologist so lovingly called it) shortly after birth. To sum it up, she was calcium deficient (no surprise given her early birth) and it was diagnosed with an x-ray of her left wrist. Today's x-ray will be used to gauge her bone density and "age" or maturity. It should help us determine if there is a medical reason behind her short stature. I've never been so happy to be sent for diagnostic testing in my life...I feel like I finally have at least one medical professional on my side regarding Sarah's size. We should know more next week.

8. We were waiting for Sarah's appointment today and she and I had been in the main part of the lobby looking at the aquarium. We walked back into the well baby waiting room and there was a tiny baby in a stroller. Wearing an apnea monitor. And a nasal canula. Talk about a kick in the gut. We stopped so Sarah could see the "beebee" and talked to the mom a bit. Turns out Callie was born at 26wks and is now 4 1/2mos old. I didn't pry (though I wanted to ask 1,000 questions) but seeing Callie made me realize just how far we've come in two years.

9. For all the people out there who get worked up when you compare kids to dogs...clearly they didn't take enough obedience classes. The similarities are FASCINATING.

10. For lack of anything better (and because my last update was FOREVER ago), I leave you with our 2011 March for Babies t-shirt design. The walk was the Saturday following the devastating tornadoes that hit central Alabama. Many members of Team Sarah were volunteering elsewhere that day, but we had a big turnout in spirit. We raised more than $300 for our local March of Dimes chapter!

Ten on Tuesday

This one is dedicated to all things food! Ten things Sarah has eaten this Tuesday:

1. Milk. She's had a minimum of 16oz of whole milk.

2. An entire naval orange. Well, minus the peel.

3. A large banana. Again, no peel.

4. One egg scrambled with sausage and heavy cream.

5. Cinnamon toast and mixed fruit (this was her SECOND breakfast of the day - she eats breakfast at home and again an hour later at daycare).

6. Macaroni & cheese, green beans and mixed fruit for lunch.

7. A moon pie. Yuck!

8. Animal crackers.

9. Four whole wheat breaded chicken nuggets.

10. Marsala noodles with mushrooms (leftovers from last night).

And even though that's already ten, she also ate quite a bit of the macaroni that I had for dinner. Oh and the better part of a juice box (fruit and vegetable juice). And she had probably 1/3 of MY breakfast burrito this morning.

How this child only weighs 20lbs is beyond me. But boy oh boy am I glad she's a good eater!

It's that time again...

we're MARCHING FOR BABIES!

I had this wonderful New Year's Resolution to blog regularly. Clearly, that's worked out well...but since my last post was about Prematurity Awareness Day, it's fitting that this one will be about the 2011 March for Babies.

If you're reading this blog, it's likely that you already know the story of Sarah's birth. Born 13wks too soon. "Typical" preemie complications (which are never really typical). 12wks on some form of oxygen. 16wks before she came home. But since I'm such a blog slacker, many of you might not know how she's doing now.


Sarah is 19mos old. She's been in daycare since late August and is doing surprisingly well. We had a rough start as Sarah adjusted to the germs but she's handled the winter like a champ. Quick, someone knock on wood!

Sarah likes the park. She likes to wave at cars (full of strangers) as they drive by. She's a great sleeper. She likes to try new foods. Her newest word is "apple"...though it comes out "bapple". She insists on brushing her (seven) teeth twice a day. And she LOVES her dogs.


Right now, the one glaringly obvious sign of Sarah's prematurity is her size. At 19mos, Sarah is 28in tall and weighs 18.5lbs. She's the size of a 9mo old. But don't tell her that. Developmentally, she's right on track for her actual age (thanks in part to the wonderful team of thearpists that we see thru our county's KidsFirst program) and she certainly has the sass and spunk of a soon-to-be 2yo.

We're proof that prematurity isn't "cured." It doesn't magically go away at a certain age. It lingers. And we'll never really know what lies around the next corner. We've learned to roll with the punches. And we definitely don't sweat the small stuff.

On April 30th, Team Sarah will once again March for Babies in an effort to raise money and awareness for the March of Dimes. Simply put, the research and the therapies that the MoD funds and supports saved Sarah. I'd say that's worth a bit of fundraising on our part!

You can support Team Sarah two ways: 1) sign up to walk with us or 2) donate to our mission. You can do either of these things at my March for Babies page: www.marchforbabies.com/teamsarahfrancis

Brandon and I are also working on a fun raffle of sorts for anyone who donates - more on that soon!

We march in NINE WEEKS and we really need your support to make Team Sarah a success for the second year in a row! And really...who could say no to this face?!

Prematurity Awareness Day

November 17th isn't a national holiday. It's not even a bank holiday. But it IS Prematurity Awareness Day. I've been thinking all week about my "Blog for Babies" entry - at first I thought I'd take the statistics route. Ya know, "1 in 6 babies born in Alabama is born premature", "40% of premature births are unexplained", or maybe even "a baby born at 23wks has a 17% chance of survival". But then I realized that statistics are...well, just numbers. So in lieu of bombarding you with generic statistics, and since most of you already know my Sarah, I'll give you OUR prematurity numbers.

13 weeks early. Sarah was born at 27w3d.

1000 grams. Sarah's birth weight. That translates approximately to 2lbs, 3oz.

12.5 inches. Sarah's length at birth. She was one inch longer than a Barbie doll.

9 leads, wires, tubes and hoses connected to Sarah in the photo above (she was three days old).

5 blood transfusions. Three from unknown donors. Two from her PaPa (my dad).

2 rounds of medication needed to close the Patent Ductus valve in her heart.

0 brain bleeds. We're amazingly lucky to have dodged that bullet.

19 days before we were able to hold Sarah.

1 NEC scare. Necrotizing Enterocolitis. Feared by preemie parents everywhere.

80 days on oxygen, delivered via ventilator (2 days), CPAP (2 weeks) and nasal canula.

109 days in the NICU.

Please don't think it ends there. Prematurity isn't "cured" at NICU discharge. No, it follows you home. And I'm honestly not sure it ever goes away. Every time Sarah sneezes, I remember how fragile her lungs still are. Every time I put 6mo pants on my almost 16mo old child, I remember how small she is. Every time I walk into St. Vincent's hospital and smell the hand soap, I remember the many days that I thought we'd never make it home.

After 16mos, I've finally been able to make (a TINY bit of) peace with Sarah's early birth. At the very least, I'm doing my best to make sure that (a TINY bit of) something good comes from our experience.

-I'm now volunteering with an amazing group (http://www.nicufootprints.org/) that ministers to NICU families in our area. That "ministry" comes in the form of prayer, but also in the form of emotional and sometimes even financial support.

-We're also involved with the mission of the March of Dimes now. We participate in their annual Blue Jeans for Babies and March for Babies fundraisers.

-Though it's difficult every time, we return regularly to the hospital where we spent those first three and a half months. Sometimes we go with donations for the NICU(swings, bouncy seats, blankets, clothing) and sometimes we go with goodies for the NICU and labor/delivery nurses (donuts, cookies, BBQ). Simply put, they saved Sarah. We want them all to know how grateful we are for that.

So, there you have it. A face to put with the statistics of Prematurity Awareness Day. A face representative of 500,000+ premature babies born each year. Please support your local March of Dimes chaper in their fight for babies like Sarah.