Tuesday, April 28, 2009

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.

Tuesday, April 21, 2009

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.

Tuesday, April 14, 2009

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

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 _____________)