3 miles of fun and inspiration

My "Big 3"

This is Sam with his T ball friend Quinn, a former 1 lb, 23 week survivor!!! Aaron riding in style...

Me and the boys in our cool cap Ts ...

So, these are photos from the March for Babies on Sunday. A big, huge thank you to all of our donors---I am convinced that these dollars will help create a miracle for someone else's baby.

There were certainly a lot of little miracles walking with us on Sunday. Tiny preemies who defied the odds. There were also too many families walking in memory of a lost child...I salute those who honor their lost babies by helping future babies. We didn't see any other cooling cap families, but we know our friends in Texas were walking "with us" in spirit. Sam and Aaron had a lot of fun. The park is beautiful and they had so many fun activities along the walk. We ran into many friends from the community and Aaron's new play group, which was nice. We talked quite a bit to Sam about how blessed we were that he was born healthy and how we were walking to make sure all babies eventually were born as healthy as he was. We also talked about how grateful were were for the doctors and nurses who helped his brother to get well. Something must have stuck, because today, his teacher told me that he bragged a lot about all the new things his brother can do and how proud he is of him. OK...that is like mommy heaven!

Today, we went to the University for Aaron's neurology appt. He hadn't seen the neurologist for about 6 months. I think I would not be wrong to say that she was amazed by his progress. He picked up his toy phone and said "Eh-Oh" and called me mama, and motored around the exam room. She examined him and thought his tone was now normal. (Aaron had very increased muscle tone in his arms and legs, which can lead to spasticity and disability, in the past) I asked her what she thought happened and she said she can't explain it. She called in one of my former teachers, whom I greatly admire and respect to see him, and his comment to me was, "Do you just sit at home and feel amazed and blessed all the time?!" Yup, pretty much. Sometimes I wonder if I overreacted to Aaron's MRI and birth injury, but then I see the incredulity on the faces of his doctors and my colleagues, and I know we are truly witnessing an unexpected miracle.

Then, we headed up to see the NICU staff. We got to visit with several of the nurses and the NICU fellow (one of my former interns) who told us to "hope for normal". There were tears in eyes, and not just mine! He was trying to run down the hall of the NICU and flirting with all the nurses.

The one concern today was that Aaron, once again, did not gain weight well. He hasn't gained any in 2-3 weeks and now is less than 3rd percentile. Not one, but 3 different people today told me that someday he will be eating me out of house and home. I sure hope so, but what to do NOW?

At least his length was 50th percentile and head 25%ile. I am staying positive---but this boy needs to fatten up soon.

Disney, Development, and other Adventures

Well, the whole family packed up and buoyed by my parents' generosity, spent 2 glorious weeks in Florida. Most of our time was spent on Marco Island, relaxing by the pool and at the beach. By relaxing at the pool, I mean putting swim diapers on and pulling them off, applying sunscreen, constant reminders to "Don't run by the pool!", various games made up by Sam including ride the bronco (water version, with various adults as said bronco), water creatures, and of course, football, volleyball and badminton in the water. I do not mean, as I may have in a previous life, lying by the pool reading the latest Jennifer Weiner novel. But...it was GREAT! Aaron loved all the water activities and went bravely into the splash park and pool. He was a little more cautious at the beach, but by the end of the beach was throwing a tantrum when I would try to hold him back out of the waves.

Matt and I also were brave...or insane, depending on your perspective...in that we took the boys to Orlando to Disney for a couple of days, during spring break. Actually, our day at the Magic Kingdom actually had magical moments. We went early and it was completely worth it. Aaron and Sam both enjoyed the Peter Pan ride, Winnie the Pooh, Dumbo, etc. Aaron especially loved the Small World ride and despite the soundtrack, the rest of the family had fun trying to pick out which countries were represented. Sam knew quite a few! We went back to the hotel and napped in the afternoon, had a cheap take out dinner, and went back late to go on more rides, virtually free of lines. The whole day went very smoothly. The next day...not so much... we went to Hollywood Studios, otherwise in mind now known as Hollywood Hell. Long story....long day...but if you go... you have to do the Toy Story ride. It is essentially video games in a Tilt-A-Whirl and was great fun for all involved.

Aaron was completely game for all the rides and was actually disapponted when they ended. He will definitely be our roller coaster boy. Big surprise. Sam was unimpressed with the coasters, but I think really did enjoy the parks.

Speaking of magical, those of you who follow my bloglist may have read about my friend Retrogirl. A magical time for her...I am so excited to watch the next 8 months of her life unfold and look forward to welcoming her into this crazy, wonderful sisterhood of moms! She is going to be a great one!

Aaron had his developmental assessment by his Early On coordinator today. We needed to come up with our plan for the next year. He tested within normal range in all categories. They assess fine motor, gross motor, social and emotional, problem solving, speech. His coordinator came with written goals for his contract today, things we'd like him to achieve in 6 months. For example, in 6 months, Aaron will say 5-15 words. However, she said that in the time she was there, he said 4 words, so she upped his goal to 10-30 words! He was amazing today, pointing at some pictures in books, following a few simple directions, pointing to his head when asked, saying Hi (or something that sounds a LOT like it) and waving. So, for the next year, we will be doing much more of our Early Intervention in a group setting, in a playgroup at the school. I think this will be very good for Aaron and I both, especially since the big man will be off a KINDERGARDEN in the fall, sniffle.

March for Babies

Aaron in March 2009, mowing the lawn!

Aaron in March 2008 wearing his cooling cap, on the ventilator

As I referenced in earlier blogs, we feel compelled to do something to give back for the miracle we have been blessed with. This year, we are going to walk in the March for Babies but shunt the money to UM for research on cooling cap. Here is the flyer I sent out to promote our walk:


The birth of a child is always a miracle, but some children enter the world with greater challenges than others. During labor with my second son, my uterus ruptured and our son was found outside of my uterus in my abdomen during an emergency C-section. Many babies don’t survive this horrible birth complication. Aaron was born lifeless on March 6, 2008, resuscitated and immediately cooled with ice packs awaiting trasnfer to Mott Children’s Hospital. He suffered significant lack of oxygen and his future was very uncertain. As a pediatrician, I feared the worst. He was treated with a new cooling technology and anti-seizure meds to minimize brain injury. Today, Aaron is a wonderful, healthy toddler! We are thrilled with his progress and firmly believe his life would be much different today without the care he received.

We are walking on April 26 to honor Aaron and the doctors at St Joseph Mercy Hospital and C. S. Mott Children's Hospital who saved his life. The funds we raise will go toward cool cap technology and the research that will be so crucial in saving other babies.

The cooling of an infant's brain decreases both death and the burden of disability in survivors, but there is still room for improvement. Researchers believe that it's probably not the mode of cooling that matters (i.e. head vs. whole body), as much as just getting them cooled. Doctors at Mott are presently working in the lab on combination therapy,
using cooling techniques along with FDA-approved drugs. In clinics, doctors are using technology to determine how to enhance the ability to predict an outcome while in the cooling phase.

The money we raise on this walk will help these doctors continue their research into the neurological problems of infants. We hope to spare more children like Aaron and their families heartbreaking disability and pain. Thank you for your participation and your donation.


Lauren Gold and Matthew Jane

Here is the form, if you need it in document form, you can email me-

Please write Aaron's name on your document.

I want to make a difference for the
University of Michigan Health System with a gift to "Cool Cap Technology"
at the C.S. Mott Children’s Hospital and Women's Hospital.”

Name (please print) ________________________________________________
Street Address ____________________________________________________
____________________________________________________
City ______________________ State ______ Zip _______________________
Phone _____________________ e-mail _______________________________


Enclosed is my gift in the amount of: $______________
□ Check enclosed payable to the University of Michigan
□ Please charge my gift to:
□ Master Card □ Visa □ Discover □ AMEX
______________________________________________________________
Card Number
_____________ ____________________________________________
Expiration Date Signature
OR

Please accept my pledge in the amount of: $___________
Initial Payment enclosed (optional): $___________
Balance: $___________
I subscribe to pay the balance:
□ Monthly □ Quarterly □ Semi-Annually □Annually
over a period of _______ years beginning ________ (month) ________ (year)
or as follows _____________________________________________________
________________________________________________________________
Signature (required for all pledges): ___________________________________

For more information, you may contact the
Office of Medical Development at 734-998-7702 or 800-468-3482
All gifts and pledges will be acknowledged for your records.
All gifts to the University of Michigan are tax deductible as provided by law.
For your convenience, pledge payment reminders will be sent to you according to
the payment schedule you have chosen.
(UM account _____________)

1 year later...

Matt, Samuel, and I brought Aaron home from the hospital one year ago today!! We had his bris and had a small celebration with family. I remember being so relieved and excited to have him home, but with such a sense of fear, a weight that seemed suffocating. What a difference a year makes. Now, although I still have my worries ( I didn't have a personality transplant!) I feel so much lighter and more optimistic.



On that note, Aaron was evaluated today by his Early On coordinator and did great, meeting all his milestones across all parameters and exceeding some! He signed "more" for the first time while she was playing bubbles with him. He is pointing at things he wants and saying "dat" which she thought was great. He also says Mama, Dada, and repeats Bruva for brother. He also says something that sounds like Dog and Ball. He shoots baskets, it is so cute! He loves speed, I was racing him down the driveway today in the wagon and he was laughing so hard.



Sam is writing so well, he wrote a story for Aaron the other day and is constantly asking, "Mom how do you spell...?" He is so sensitive, he is very concerned with prey and predators. He can't believe that his chicken nuggets are actually made out of chicken! I didn't go into too much detail because I can't handle nascent vegetarianism on top of our myriad of food allergies.



On that note, Aaron was sick on the day of his endoscopy, so we have delayed it. He is gaining weight, albeit at the 4th percentile, so we will see how he is doing after our upcoming vacation and then proceed. He loves soy ice cream, which I think may be helping with the weight gain.



Matt and I just got back from our first weekend away without the boys since Aaron was born. We had a great time and the boys had lots of fun with their grandparents.

Sisterhood

If you were a little boy...what would you want in an aunt?



She'd have to be lots of fun. Willing to play sports and games with you, act silly, cheer you on at sporting events. She'd be among your biggest fans and delight in you. You'd like her to live really close, but if not, you'd be happy to know she made it as often as she could for special occassions. You'd want her to be there when you were born, and weep with joy when she held you for the first tiime. You'd want her to be adventurous. You'd love her to always bring a little something when she came to visit. You'd like to hear how she rushed to be by your side when your family needed her most. And if she came with a nice, talented, football fan, video-game playing companion, well, all the better :)

My boys have that and more.



If you were a big sister, what would you want in a little sister?



She'd be your first playmate. If you were a little stodgy, she'd have to lighten you up. She'd be just competitive enough to always prod you to be your best. She'd always be in your corner. She would be the one you whispered to late at night, told all your earliest girly secrets too. Let's be honest, you'd want her to be the student to your teacher and let you choreograph the dance and swimming routines...but you'd be ok with switching roles sometimes. She'd have to be lots of fun and make you laugh until you cried. You'd want to protect her, always.

I had that and more.



If you were me, what would sisterhood mean to you?



It means having someone so different from you and so much the same. It means finishing each other's sentences and having some spooky connections. It means being so proud of my little sister- her spirit and smarts, her tolerance and tenacity. She makes me want to be better. Sometimes, it has meant fear...when her adventurous spirit collided with my worrywart ways! (Can I say transitional?) It means always having a sounding board and trusted advisor, a shoulder to cry on. It means unconditional love and support from someone who truly knows me, all my flaws, and loves me anyhow. It means fashion advice! It means everything to me and I can't imagine my life without my beloved sister---Sisters are forever! And yes, forever is way way past 30!

Happy Birthday Andie, we love you so much.

HAPPY 1st BIRTHDAY AARON!

Two years ago, we began seriously thinking of having another child. Another baby to cuddle and nurse, rock and sing to, watch grow. A sibling for Sam, a best friend, sometimes a rival, a playmate, someone to mock us with in our old age! A child born of love and devotion, a fourth member of our family, an individual among a family of strong personalities.

Then, you were with us. Safe in your watery cocoon. We rejoiced. And already, you were different. I felt different. You kicked and squirmed and moved. We predicted that you would be our "wild one". We went for our ultrasound and giggled as you hammed it up for the sonographer, showing only your face. We heard Sam would have a brother and I dreamed up matching outfits, muddy boys, hearty appetites, big bear hugs. We debated names.

One year ago, you were cheated of a safe, smooth entry into this world. But you, my strong boy, fought your way back to us. Firm hands, guided by G-d, restarted your tiny heart and helped you to breathe. You endured more than any baby should have to. Wise doctors sent you into an icy dreamland. Hours old, they wheeled you by me on your way to another hospital. I squinted to see you, longed to touch you, wanted you back inside me where it had been safe. Your dad and I named you Aaron- "Strong mountain" and you were gone. Your daddy, grandparents, aunts, and uncle held vigil at your bedside, and brought me messages of your determination, your adorable head of hair, your beautiful face. They brought pictures, and through it all, I could see for myself. We were so scared, shocked, loved you so much, wanted so badly for you to be healthy.

One year and five days ago, we held you for the first time and I was yours. About two weeks later, you came home. Your family celebrated, your brother cuddled you and we were so grateful.

10 months ago, you smiled and sunshine peeked out through the clouds. Your smile could melt glaciers! 8 months ago, you laughed, and it was music. We stretched and sang, worried and wept. Let me tell you---you could cry with the best of them! You rolled toward your brother and he began to be your devoted coach. You scoffed at sleep and nourishment, what superbaby needs such things!?

6 months ago, you sat up. I exhaled. Soon after, you CRAWLED. Of course you did, and as predicted, you are our wild one. Wonderfully stubborn and strong-willed and sassy! Temper tantrums way before 2! But also, so sweet, my snuggle bug and your daddy's pride and joy. You and your brother motored around the house and I could hardly believe my eyes.

1 month ago, you walked. For me, it was like watching the moonwalk, no, better. I dream again, and I am sorry I ever underestimated you. I won't do it again, dear son.

Today, you called me mama. You played on the playground with your aunt and your brother. You ate and actually enjoyed your birthday dinner (chicken strips, fries, peas and egg-free, dairy-free chocolate cupcakes :)) You made a big mess. You tumbled head-first down your new slide, fearless. You "read" constantly and so intently.

Today, we celebrate your life. I cannot imagine life without you. You are so special, so unique, our little Cinderella man, your brother's cha-cha, your Bubbie's superstar, little Saba hair...so today, for our Aaron Jacob- with thanks to Sarah McLachlan- the song that always makes me think of you...my not so ordinary miracle

It’s not that unusual when everything is beautiful

It’s just another ordinary miracle today

The sky knows when its time to snow

You don’t need to teach a seed to grow

It’s just another ordinary miracle today

Life is like a gift they say

Wrapped up for you everyday

Open up and find a way

To give some of your own

Isn’t it remarkable? ....

Please don’t throw your dreams away

Hold them close to your heart

Cause we are all a part Of the ordinary miracle today

Changes

Well, Aaron's 1st year is fast coming to a close and it is time to change the title of this blog. A big thank you to my BFF Retrogirl for showing me how to change my focus, both in the blogosphere and in real life. I have struggled with the title (and the focus) a lot this year. This was certainly a year that was, in many ways, centered around Aaron---but there is definitely another center of attention in my life! Both in the blog and in real life, it has been a struggle to not lose sight of our big boy's needs in light of his brother's challenges this year. Also, as Aaron continues to grow and thrive, he is and will be so much more than his heart-wrenching entry into the world. My hope is that the difficulties of his early days will slowly fade with the glories of all his upcoming "firsts". Every inspirational story you read about kids overcoming challenges seems to bear a common theme: My parents treated me no differently. So, in that spirit, this blog is now officially about BOTH my busy, brilliant, bossy, beautiful boys.