Shoes

So, my mom's birthday starts in a few hours and she has been struggling with foot pain all week. This has gotten me thinking a lot about feet, footsteps, and of course...shoes. No, not the fact that my mom has an enviable collection of black shoes that leaves my dad shaking his head. But- filling her shoes and walking in her footsteps.

Because my mom is THE mom. THE mom that every child should have. The kind of mom that I strive every day to be, the benchmark by which I measure how I am doing. I don't think she realizes how extraordinary she really is. Growing up, I can't tell you how many times my sister and I would hear, your mom is so (cool/nice/pretty/fun/wonderful) and we would pretty much have to nod our heads and agree. Even in the midst of being teenagers!

My mom will and does drop everything, at any time, for my sister and I. In medical school, I really messed up an exam. My mom was at my door in what felt like only minutes, with hugs and I'll admit, a few wine coolers. She has seen me at my absolute worst, more times this year than I'd like to count, and has been absolutely steadfast in her support and love. When I woke up from anesthesia, terrified, bereft, and feeling completely unlovable, I asked for my mother immediately. As terrible as I felt, and as much as I doubted anyone else's ability to forgive me, I knew my mother would not waver. I wanted my mom.

My mom is a lot of fun. Our "fearsome threesome" logged a lot of hours in motor homes and motels, going to horse shows across the state and country. I remember head lice in Allegan, my mom's witty comebacks (toothless and dog piles come to mind), turning up the radio and dancing. And when the girls got the giggles...watch out. She loves music and has amazing style. She has taught me so much about true love, generosity, class, patience, forgiveness. Not to mention all the myriad of practical stuff that mothers teach kids every day.

My mom is a GREAT bubbe. She relishes our boys with a passion that is amazing to watch. She is always up for a game of baseball, basketball, soccer. She jumps into the pool with them. She teaches them things that I didn't even think of. She has had faith when I didn't and has been right all along. They are so lucky to have her and adore her completely.

My mom is ALL mother. She stops to help strangers on the street and offers motherly advice to those in need. She told me once that she always thinks about how she would want a stranger to treat her children if she was not around and acts accordingly. How much better would this world be if we all did that!?!

My mom can't understand why her feet hurt, but I know a little secret. It's because she is the heart and soul of our family, and carries all of us on her able shoulders. And that's not always easy to do in cute shoes. I love you so much Mom. HAPPY BIRTHDAY!

Night

So, what is it about the nighttime??? I am lucky...I don't suffer from insomnia nearly as badly as my dear friend who wakes at 4 am for no apparent reason, or as my mom who can be up half the night. No, once I am utterly exhausted, I generally can fall asleep and stay asleep. Unfortunately, for me, utter exhaustion doesn't come before midnight. And the boys are up early. And Aaron (currently nicknamed Nutty Bear) has his 3 am snack.

But really, it is not the lack of sleep that has me blogging right now. It is that every time there is quiet, there is no peace. We had a GREAT day today. DH's trial is over! He did great and I am so proud of his dedication and smarts. One small silver lining of him being gone is that it really highlights how much I love him and enjoy his company, even after so many years. So, anyway, he took the day off today. We had a great time, Brother Bear went to his grandparents for a little while, so DH and I had some time with Nutty Bear on our own, and then we all had a lot of fun the 4 of us. I thought to myself, OK, I obsessed over the new diagnosis all week, but now it is time to move forward. DH is home, I can relax a little, things will look more bright. And for a while, it did.

Then, the boys are in bed. Exhausted trial lawyer fell asleep next to me. I snuggled in, gave thanks for my guys, closed my eyes...and....envisioned Nutty Bear's ribs. And worried about whether he will grow to be at least average height. And whether he will ever be able to eat pizza. And then how our family will change, will he resent his brother, will he always feel left out, will we be able to travel, eat out, once he notices how different food is for him? Will he ever enjoy food? And then started thinking about how this shouldn't matter so much to me, when we have so much to appreciate about his recovery from his birth injury. Oops...don't think about the birth injury...too late...now I start thinking about whether he is really on track like I think or am I in denial...and now I am wide awake and I give up and get up.

I am fine as long as I am running at full speed but I cannot be still/be inside my head. Maybe that's OK, maybe it isn't, but for right now,it is just reality.

Aaron updates...

He now says bye-bye, shakes his head no, and maybe says Ne Ne for night night. He took 7 ounces of formula at bedtime tonight (new record) but he had skipped ice-cream, so unclear as to whether this is improvement. He claps his hands and stomps his feet to "If you are happy and you know it..."

Sam's questions today

Why do the female lions hunt?

Why does water make you wet?

Why is rain only water? (As opposed to what buddy) Why isn't it lice?

What is the brown stuff in Nutty Bear's diaper? (Um, that would be poop)

Results

Well, we got the results of Aaron's endoscopy this week and we were pretty surprised. Basically, they were looking for a type of white blood cell (these are immune cells) called eosinophils which are active in allergic diseases like asthma and eczema. There are not supposed to be any in the esophagus. If there are more than 15 in a high powered field under the microscope, that is diagnostic for eosinophilic esophagitis. Aaron had more than 100.

My poor baby. I just feel so sad that he has been suffering all of this time. Most of the patient info I can find makes reference to kids having vomiting, which he never has had, but the nurse told me that the most common complaint of kids old enough to vocalize is painful difficulty swallowing their food. In researching this online, I have also found that the esophagus motility is compromised, so the food goes down more slowly. No wonder he feels full too early.

Treatment consists of changing the diet to eliminate potentially allergenic foods. Since we are already off of milk, egg, sesame, nut, seafood---they have decided to let us continue with his current diet. The other treatment option is mixing a small amount of steroid medicine with Splenda to make a "slurry" to coat his esophagus. That is what we are currently doing with the hope that it will help him to eat and grow. It is unclear what percentage of kids "outgrow" this and what the prognosis is. Some kids get it throughout their entire GI tract. Luckily, Aaron's stomach and small intestine looked ok. I did some research tonight, and the severity of some of the kids' illnesses shocked me. But, I think to be informed will help me to advocate for him. We will recheck his weight in 4-6 weeks.

I just could cry writing this. I am just so surprised---as a doctor, I suppose this diagnosis shouldn't be surprising, but as a mom, maybe I just felt Aaron had already survived so much, he should be "immune"! Ridiculous, I know, and it could be so much worse. We are so lucky for his great development and overall good health, in light of what could have been. But, just tonight, I am going to say it. I am really, really angry that he has to deal with this. Period.

We will take any and all prayers for a good response to his medicine...because the next steps are not fun...

Endoscopy update

Well, Aaron had the endoscopy this morning. He is such a trooper. He didn't seem to upset about forgoing his morning formula for apple juice and was quite cheerful at the hospital before the procedure. Once the CRNA did his pre-op History and Physical, we were ready to go. (It is interesting watching people's eyebrows raise when they ask his medical history and I tell them.And then, ever so cautiously, "So, how is he doing on his milestones??") I took him back to the area in the operative recovery room where they do these kinds of procedures (since there is no incision, he didn't have to be in the operating room.) Once again, I irrationally wanted to scoop him up, carry him away and forget the whole event, but I didn't, of course. There were lots of personnel there, an anesthesiology resident, the nurse anesethicist, a pediatric cardiology fellow who was probably there to practice IVs and intubation. I swallowed hard but just said, take good care of my baby. Then, I held him and sang while they put the mask on, he cried and struggled for a second, then off to dreamy land. I left before they intubated him and put the IV in. So, I think it was relatively peaceful for him. He looked so tiny on the strecher.
We waited about 45 minutes and his GI doctor came out and reported there was furrowing on his esophagus, which is suggestive, but not diagnostic for eosinophilic esophagitis. We won't know for sure until the path comes back Friday or Monday. He had done fine with no complications.

Then, about 1/2 hr later, we were called to come see him. As soon as we came into the PACU, I could hear him yelling. The recovery nurse said some kids just wake up suddenly and fighting mad, and that was our boy! Poor baby, I am sure he woke up scared. He settled downed quickly when I held him, slept a little, drank a little juice, and then we went home. Whew. So glad it is over. He seems to be doing fine now, he slept and is now eating a popsicle while I finish this post.

So, maybe a new diagnosis? I hope not, but I guess we will cross that bridge...
I'll keep you posted.

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.”

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For more information, you may contact the
Office of Medical Development at 734-998-7702 or 800-468-3482
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