Bringing up my boys

Where to start?

2012-01-08T21:17:00.004-06:00

I have been painfully absent from this blog. Much of that is a lack of time, and for many months (years) this blog was a place to process the roller coast of emotions that followed after the birth of my dear Air Bear. Our roller coaster has been more of a kiddie coaster of late, with wonderful peaks and more shallow valleys. There is less angst. Yes....we were told to consider a Gtube this spring.....but we so far have avoided that and we got to introduce DAIRY! Yes...A is in speech therapy, but heck, so was his daddy and last I checked he talks for a LIVING :) And lastly, my boys are so much their own little men now, that I feel more guarded in what I can say, what they might read later, what could be misinterpreted...it's a wonderful "problem" to have, but it makes for less satisfying cathartic writing.

SOOOOOO... the biggest news, and the reason I write today is that we have a new boy! Today is his 6 month birthday and he has completed our family. Ben is like a huge burst of sunshine and I can't imagine life without him. For those of you who stumble on my blog while researching uterine rupture, I will say that it was a pregnancy filled with anxiety and great hope. I couldn't even write about it, in fear that it wouldn't end well. But at 35 weeks and a few days, my last child came into the world, smoothly, in a routine manner that many moms take for granted but I never will. He cried and was pink and was one of the 3 most beautiful people I have ever laid eyes on. It is a crazy chaotic life raising 3 boys, but I am trying to savor his infancy. I love nursing him, his sour milk mixed with Burts Bees smell, his belly laugh, the way he opens his mouth like a baby bird. I am so eternally grateful that I have the chance to mother a baby again. Sometimes it feels bittersweet, and I get angry at myself for being so scared, sometimes paralyzed with fear during A's babyhood. But then I remember that the good times very quickly outweighed the scary times, and A and I spent so much time together! I may have been crazy intense but I think (hope) my love outweighed my fear.

And, in terms of enjoying Aaron, I am making up for any lost time. I LOVE 3 year olds and my boy is one exceptional 3 year old. He is hilarious and daring and mischievious. He never stops moving. He is starting to enjoy some foods, which makes me so happy. He is a great big brother and little brother. He knows his ABCs, counts, draws, shoots baskets, understands how to work an IPad better than me. My beloved baby sister got married this year, and watching him play on the beach and I still can have my breath taken away and tears in my eyes watching him, thinking how close we came to losing him, feeling the enormity of the great miraculous gift we were given the day he was born and survived.

So all in all, a very lucky lady. My big boy will turn 8 this year, and I will save writing about him for his birthday. I sign off with some pics of my trio.

Heavyweight Champion

2010-08-15T21:16:00.003-05:00

It has been all summer and I haven't updated this blog. It has been very busy...my big boy at home for the summer, a new job, lots of time spent with friends and family. And my mind has just been more quiet lately. But this week...we got news that I have to shout from the proverbial rooftop...Aaron weighs 26.5 lbs. This puts him at between the 10th and 25th percentile for weight, a percentile he hasn't been at since about 6 months of age. So, huge sigh of relief.

The little man continues to amaze. He is talking a little more every day. Tonight, I heard him on the monitor singing the Caillou theme song to himself. He is routinely putting together 3-4 word sentences. Yay!!! His independent streak is unbelievable to me. I had read about this tendency of toddlers to want to do everything for themselves, but it never really took hold with our big boy. He was pretty content to let me put on his shoes, hold his hand in the parking lot, etc. Not so with my little Cinderella man. If I am in a hurry and buckle him into his carseat (instead of letting him do it himself), I WILL have to withstand furious wailing from the backseat for the duration of the trip. He rebels against holding a hand to walk down stairs, having his burger cut in two, being read to instead of reading book himself. "ME DO IT!" He wipes off kisses with a glint in his eyes. So, like mommies around the world, I wait. I wait for the moments when he is tired or frustrated, or caught off guard, or in need of a soft place to fall. And in these moments, when he climbs in my lap and stays put for a whole story...when we giggle through the photo album...when he comes in for the early morning baba, I hold tight to the baby inside this amazing little boy. After all those months of wanting to fastforward to these glory days, these days when I would know my boy would be OK, now I want time to stand still. Greedy girl.

2!

2010-04-17T22:34:00.003-05:00

My little guy is a 2 year old, with all the crazy tantrums and independence that implies. While his brother still has no problem letting mom help him with all sorts of activities of daily living, A wants to do everything himself. Buckle himself in (and out) of his carseat, put on his shoes, open the door, walk up and down the steps....some of these tasks are more appropriate than others! When I am in a hurry to get somewhere, his shrieks of protest when I want to buckle him in are not convenient, but I try to remember that this independence has taken him far in life. Right now he is totally in love with his baseball mitt. Not surprising, as baseball season is in full swing at our house.

The one area he is NOT tackling on his own is sleep. After learning to climb out of his crib (Can you believe the irony?) he has been staying in a toddler bed in our room. I haven't had the strength to have the all out fight that will ensue when we try to get him back in his own room. Yet. The day is coming...

We are in a not so great time for eating...the topic is so old...I am trying not to let it run Airbear's life and am just hopeful that one day he will start eating better on his own. His weight is holding at the 5th percentile so we are hanging in!

Just around his 2nd birthday, A went back for his final speech eval and they found that he did have a speech delay in expressive language. I had suspected as much and was prepared to fight for him to have continued services, but in turned out that I didn't have to argue. Then, there was spring break and he started talking a LOT more. And more clearly. By the time his 1st sesson came this week, he was doing so much more. The therapist was very pleased. I think the sessions will be fun and can't hurt, but I am not too concerned anymore. Some of his new phrases include...

Light on, light off, open door, git it me, Abby kiss,

He also likes to count. He was asking for kisses from the pooch and I said she already had kissed him. "Two!" He says. I reply "She gave you two kisses!" "Twee!" (meaning three) he says back.Smart boy!

730 days

2010-03-06T21:11:00.006-06:00

Aaron is 2 years old today. 730 days. I was thinking about it that way today for several reasons. First, because every day we have with him is a gift. Do I always feel that way? On the hard days...during sleepless nights....no, regretabbly not. But, MOST days, for at least a few minutes, I look at my little boy and marvel at how far he has come and how sickeningly close we came to losing him. And, Ifeel so grateful.

730 days because Aaron has taught me a lot about living in the moment. I am currently a mostly stay at home mom with no idea what the next year will bring. Those of you who know me, even a little, know that I have always been a girl with a 1, 5, 10 year plan. Not so much now. What do I know? I know that I will be the mom of two remarkable boys...I will watch Aaron play soccer or basketball or ride ponies. I will teach him to use the potty, teach him his colors, take him to preschool. I did not know that 730 days ago. It is enough. It is everything.

Aaron's 2nd birthday was amazing. He is so special. He had a great day, full of smiles and gave kisses and hugs to everyone. He even kissed Aunt Andrea via Skype. He is talking more every day. One of his favorite words is "Moooove" when he wants someone (often his big brother) to get out of his way. He seemed to really get that the day was all about him, and enjoyed it immensely. He danced along with Handy Manny, Beyonce, JT. He ate tacos like a champ. All in all...a perfectly wonderful typical 2 year birthday party...for an exceptional kid!

6!

2010-01-23T20:23:00.002-06:00

6 years old, my big boy turned 6 today. We had a fun-filled day of Chuck E Cheese and then a party with family at home this evening.

Sam is an amazing 6 year old.He thanked us today for his party and thanked his family for coming, without being asked. He had so much fun and was a pleasure to watch. He also of course, despite coaching, pointed out that he had two of one gift and the other one wasn't exactly what he wanted. I really tried to set him up for this situation, but somehow...didn't work...oh well.

All the friends were very cute and watching them together was fun. They try to act so grown up.

Sam is reading now! We have gotten great reports from his teachers at school and at religous school. He has been very patient and loving with his brother. All in all, I am looking forward to 6!

Update

2010-01-22T15:25:00.003-06:00

I realized that I have not updated on Aaron's progress in a while. It seems like I have been singing from the rooftops, but just in case anyone who reads this hasn't heard...

Aaron gained weight!!! He now had two 1 lb over a month weight gains since we returned from Ohio. 2 weeks ago, he weighed 23.5 lbs which put him between the 5th and 10th percentile. A totally wonderful acceptable weight. So, for now, the plan is to stay the course. So relieved. It seems like when I was finally at my wit's end and ready to accept anything, including a tube, to help him grow, he made it happen. He is finally outgrowing clothes. Today at library story hour, I was embarrassed to notice that his pants were way too short. Getting the waists to fit is another story.

On another note, he went for developmental screening using the Bayley tests. He scored in the average range for cognition/expressive language and above average for receptive language!!!!!!!!! The psychologist repeated the results to me several times. She said I needed to hear it and boy was she right. No matter what, we would have been fine but it was so nice to have validation of how wonderful we already think he is doing. He is anything but average to us.

So, let the good times roll...I know how blessed we are and I feel guilty sometimes that we have this outcome when so many others aren't as lucky. All I can say is that there is truly not a day that goes by that I don't marvel at something he does and count my blessings. And no matter what challenges may or may not come, I think I will always feel that way.

Musing

2009-12-04T21:57:00.002-06:00

Today was just another ordinary day. I started reading the sequel to a book I read so long ago, before I was a mom, called the Deep End of the Ocean. The initial book is about a family who loses their child to kidnapping. I have not, thank G-d, been through this, but the author's words really seem to bleed out at you. I could hardly read it. All I could think is, how differently this feels from reading the first novel before I was a mom.

Then, I was speaking to my friend, who has recently given birth. We were talking about how her first simple trip away from her newborn rocked her world. The timing, the vulnerability she felt in the car...I remember feeling much the same way. This new being depends on you to eat...you want to be there for every milestone...your life no longer belongs just to you.

At the library, we were at story hour. I am sitting at story hour with a couple of other moms, one very far along in pregnancy. She thinks that she may be in early labor and this prompts every other mom there to retell their own birth stories. Luckily, my toddler doesn't sit still for long, so my beloved AJ saved mommy from that conversation. I wish I could just hear these stories and not feel them...solely appreciate the miracle of what is and not the what could have been...I am getting there, but not there.

So, all of this, on this very ordinary day, in between laundry and pot roast and chitchat, I feel...heavy and vulnerable. Heavy with love and fretting and joy and fear for my children, vulnerable with the knowledge that they are my core, that protecting and nurturing them is so simple on a daily basis but full of potential pitfalls, humbled by the fact that a simple conversation can still bother me. Maybe I should start reading romance novels....

My new "niece" (the canine kind!)

2009-11-20T16:10:00.005-06:00

This is the only way I know how to post a video for my sister, so her new little girl Ruby gets featured here! She is so cute and we are happy to have her in the family.

CCED update

2009-11-09T22:51:00.003-06:00

Last week we traveled with Aaron to Cincinnatti to their Center for Eosinophilic Disease. He continues to struggle with gaining weight, now has fallen to less than 3rd percentile. Our terrific allergist recommended we go there, as they have been at the forefront of research and treatment for this disorder. I learned a lot there and am reading a lot of the research articles now. The research really dates back only about 10 years, which makes it hard to really know what Aaron's future holds. It used to be these kids were thought to have really bad GERD that just didn't respond to treatment. They drill into your head that it is a chronic disease, but I hold onto hope that there is still a lot they don't know. The treatments include elimination diets where they eliminate what the patient is allergic to on skin tests or eliminate the 6 most likely allergens, swallowed steroids, and elemental diets where kids are fed completely by formula for a period of time and then foods are slowly added back. The CCED recommends diet restrictions in lieu of steroids for kids his age, because the long-term effects of swallowed steroids are unknown. (These steroids, often used for asthma, are poorly absorbed, so we hope they are just coating the esophagus and thus more safe) So....Aaron did fine on his endoscopy (the only way to tell how his esophageal disease is to put him under general anesthesia and biopsy with a scope, ugh). His esophagus looks normal now (YAY, before it had signs of EE) and his biopsy showed only 4 eosinophils per HPF (previously more than 100). So...the doctors presume his failure to gain weight is due to residual behavioral reluctance to eat caused by pain and suffering with swallowing when he was untreated. Our plan now is to keep him on the steroid treatment, add a acid blocker and appetite suppressant, feed him high calorie foods and formula, and try to get him to gain weight that way. For now, Matt and I have chosen to continue the steroid, as taking out any more foods from his diet seems to be unlikely to allow him to gain weight and we still hope he can get adequate nutrition orally. His growth is important, as is proper nutrition for his developing brain. None of the options seems great, so we are trying to pick the "least bad" choices for him. Honestly, at this point, I am just praying that he will somehow start eating and grow. Please add your prayers to mine.

We did get to spend lots of time together in Ohio. When Matt had to leave for a couple of days, Aaron and I were "just the two of us", which was pretty fun (when he wasn't spitting/throwing food back at me) He got very spoiled sleeping in the big bed with Mommy and watching a lot of Handy Manny. Sam joined us later in the week and we all went to the Zoo and the Aquarium after AJs appts. Aaron was a trooper for all his tests and Sam was a super supportive big brother, I was very proud of both of them.

Iwill add some fall pictures soon!

Sentimental reasons

2009-09-24T20:30:00.005-05:00

Last January, I wrote a post about Sam on his birthday. Everyone really seemed to like it and it made me realize how this could be a vehicle to write the things we just don't always say to the people we love most. So...in February, I wrote for my dad's birthday, and then it became a bit of a tradition. The year is coming to a close for family birthday's and tomorrow is my hubby's big day. This one is hard. Not because I couldn't gush for pages about my wonderful partner in life....but because of the "ewww" factor. But, I couldn't do a year of birthdays and not include the man who walked into my life when I was 19 and changed it forever. So, I guess I am going to risk embarrassing myself and my guy...feel free to stop reading now unless you are the birthday boy.

I was not the girl who dreamed of weddings and kids and wrote Mrs. so and so all over my notebooks. In college, I always thought my friends would get married first and although it seems crazy to me now, I went through a phase where I was pretty sure I didn't want kids. (It seems incomprehensible to me now, even on my worst mommy days!) I think part of that was because it seemed so hard to imagine someone I would want to share my life with and raise a family with. And then, a slightly scruffy, really funny, smart, sensitive, smartass Scholar came along.

I liked him then, I love and adore him now. It amazes me that I had the good sense to pick him when I was so young. And like fine wine...he gets better with age. The young college guy has grown into the kind of man who puts his family first, who works so hard to keep me happy, who adores his children, stands by his responsibilities, is my shoulder to cry on and can crack me up like no other. He doesn't miss games, doctor's appointments, teacher conferences. He works hard at the office and does more than his share at home. He respects my work and me. He does a mean repertoire of imitations, has trivia and sports knowledge that amazes, loves me unconditionally, is a great attorney who has been singled out several times for his ProBono work, and there is no one I have more fun with. I want my sons to grow up to be the kind of man their father is. We have been through a lot in the last year, I feel we have been tested some, and we have come through stronger.

So, in the tradition, some song lyrics for my true love...Barbra sang this song today on Oprah and it gave me chills...this is what my husband does for me and I am so blessed to have him, as are the boys...

Make someone happy,

Make just one someone happy.

Make just one heart the heart you sing to.

One smile that cheers you,One face that lights when it nears you.

One gal you're everything to.

Fame, if you win it,Comes and goes in a minute.

Where's the real stuff in life to cling to?

Love is the answer,Someone to love is the answer.

Once you've found her,Build your world around her.

Make someone happy.Make just one someone happy

And you will be happy too

Ups and downs

2009-08-28T15:26:00.004-05:00

So these videos are from this reverse trampoline thing they have at the mall. Sam has done it before, but Aaron never has. You have to be 20 lbs. He recently hit 21 and screams to do it everytime we go, so I told the lady to put him in the harness and just let him bounce a little. He went practically up to the ceiling! Seriously, a crowd gathered. I am sure people were saying" What kind of crazy mother let her baby do this?!?" The video is terrible because I kept losing focus during my panic attack. I am not kidding. But both boys had so much fun.

Sam has had a trying time lately with fear of monsters and difficulty sleeping. We think it is a combination of his Safety camp plus this Berenstein Bears book with jealousy represented as the "green eyed monster" and kindergarden anxiety. Anyway, it has been hard on him...and our patience. He is improving. I know a lot of moms have trouble with their kids going off to kindergarden. I can't wait. He needs socialization and taming!!!! I will let the saintly kg teachers have at it.

Swimming!

2009-08-11T21:47:00.004-05:00

It has obviously been a while since my last post, life has been hectic and I have been uninspired! Well, my boys are obviously still a huge inspiration, but there has been less angst :)

Sam has been very active. He has done Sports camp and now is doing Safety Town camp. He has enjoyed both. He got picked on by some older boys the first day of Sports Camp, very mild teasing, but I think it was a shock to both of our systems! This school stuff is going to be hard. But he is resilient and took it in stride, and his mama bear mother tried to do the same. Actually, his daddy came to his defense and spoke to the teachers about it. Yay for co-parenting. Kudos to any and all single parents, but this job is HARD and I am so glad not to be partnered up so happily.

Aaron is doing very well. He has sort of plateaued a bit on saying new words, but he seems to understand more every day. His eating has been much, much better over the last few weeks. It remains to be seen if this will translate into some added ounces. Anyhow, it is nice to see him happily eating, no matter what the scale says! The added food and our decision to get rid of the calorie supplement has alleviated his constipation, so we "lost" another medicine. Yay. We are still working on getting to Cincinnati, the country's premier center for EoE research, but our fabulous private health insurance is denying thus far. Boy, I sure think it will be just horrible if my doctor's recommendations are limited by a government plan because this private plan that costs us an arm and a leg is soooo wonderful. Sorry, brief detour into the infuriating health care sideshow. Actually, if we continue to not progress on the coverage, we may get Aaron into Children's Special Health coverage, an evil government program for kids with special needs thatwould likely cover this.

Anyway, it has been a cool summer but here is footage of the boys in the pool.

The Dancers

2009-07-07T23:02:00.005-05:00

Well, the summer is flying by...what a difference a year makes. For me, every milestone this summer brings back memories of the same time last year. We have been busy with Tee-ball, swim lessons, play group and just enjoying each other. We got to visit DC despite spreading some sort of viral contagion while there, and had a great time. The hubby and I spent a glorious weekend alone together in Chicago (Thanks Bubbe and Saba!) and we have travel plans to see friends coming up.

Sam gets smarter and more grown up all the time. He is big enough to ride down the slide at the waterpark alone! Gulp...I remember when he was 2 and Matt talked me into taking him on it the first time ( I was sure he was too little, Matt was right) and I will miss going down it together, him in my lap in the innertube, both of us shrieking and giggling. I told him that and he is humoring me by taking a last ride together, but I am sure going with mom will be ho-hum now. Sigh. I thought I had more time. He is loving teeball and having more fun every day playing with his little brother. He even takes the biting in stride. They love to chase each other around the house and wrestle. I have tried to limit the wrestling (it can't be helpful in taming down Aaron's toddler aggression!) but it is truly impossible. BOYS! A nice problem to have, all in all..

Aaron is getting to be quite a handful. I remember this being a wonderful but really, um, challenging age in round 1, and that is proving true this time. He seems to pick up new ideas and words every day. He LOVES music and dancing, trucks/buses/cars, and of course...sports. He throws temper tantrums on a regular basis. Now, instead of just refusing his food, he routinely spits some back at me. Ugh. He is getting another molar in, and he is wanted to use those teeth on people, not food. He is going to get kicked out of the gym day care if he keeps it up, and I am actually working out on a regular basis now...I don't want to be kicked out :)!

All in all, a good summer, so far! The videos are a little long but so funny. Lots of white boys dancing at our house. Sam wanted to hear his favorite grown up song, the Single Ladies song by Beyonce, but I couldn't find the CD, thus the YouTube video was placed and he got his groove on. Sort of! He kind of looks like he is doing karate. Aaron just presses the button to hear music and spontaneously starts dancing. It is so funny and adorable. To his mother, anyway...

Running

2009-06-24T21:58:00.002-05:00

So, Nutty Bear runs everywhere. This adorable, clumsy run. My mom and I both noticed it today...I was trying to contain him at Sam's swimming lessons and he kept running away. She had to chase him through the library. He loves to run. He has also learned the fundamentals of baseball. You say, "Batter Up" and he assumes the position. Then, we try to "pitch" the ball right to his bat so that he "hits" it. When it works and we cheer, he takes off running with a huge grin because Bruva Bear taught him to run to first. It is so cute. Anyhow, I was chasing him today to get his jammies on, and all of a sudden, I had the biggest sense of deja vu. I was remembering sitting in the developmental peds office during one of Aaron's last visits. He had just started crawling, and we were so excited, but still found it hard to believe. And up until that point, even though he seemed to be doing well, no one would make any predictions. Anyway, we said to the doctor, "So, this means he'll walk, right?" and she said, "He will walk." I said, somewhat hesitatingly, "Will he run?" and she didn't hesitate in answering "He will run." He will run. I cried so hard, right there in the office. And that memory really took my breath away today. It all seems so unreal now, that fear, but then it comes back like that and it is so fresh.

Arts,crafts, and paperwork

2009-06-03T22:55:00.005-05:00

Nutty Bear's OT came this week. I had expressed some concern that although he is meeting his milestone in the fine motor department (things like stacking 2 blocks/pincer grasp) it seems like he is more easily frustrated with these kinds of tasks. His Early On coordinator agreed. It is hard to tell if he has difficulty handing toys over, or just prefers to hurl objects baseball style. But it does seem like he understands how to build a tower, but gets frustrated. I brought it up, but I honestly thought that it would be overreacting mom stuff.

Well, she thought not. We have been working a lot on precision and that is improving, but his OT thinks that he actually has some decreased strength in his hands. He had some difficulty pulling apart legos, apparently more trouble than most kids his age. And in retrospect, he does seem to have some difficulty with "squeezy" toys. So, she has all sorts of suggestions for using Velcro and Legos to help him with this.

And crafts...yes, crafts. I am not exactly crafty. Sam is also, I think, a wee bit challenged in the fine motor dept. My teachers famously complained about my scissoring technique. My mom scoffed that I was not going to need to know how to scissor well! (Yes, I am glad to NOT be a surgeon, but I'd like to think I improved with age) Anyhow, we are going to make a good effort to have a "crafty" summer. Obviously, Aaron's participation will be at a very basic level but I think her point is to get the boys active with this now, together. So, if you know any good baby crafts...share away!

Sam has his first teeball game tomorrow night. I will post the results, oh wait, this is A2 and there is no score. Ask me privately, you know Sam will be counting. His team is the Blue Dog Thunderbolts (I think this is what they settled on!-maybe a reference to those Blue Dog Dems)

Lastly, we are trying to get Aaron set up for a visit to Cincinnati Children's in the fall. This is where much of the EE research is going on and they have a interdisciplinary team. I spent over an hour tonight filling out paperwork, now we have to get his records and pathology then we can send it all in and schedule. I have filled out these forms as a physician for families getting second opinions many a time, odd doing it for my baby. The newest article I just read on EE states that there is a less than 5% chance of outgrowing it, despite the tendency to outgrow other childhood allergic disease. Very sad and scary. Well...one day at a time...especially with our little odds beater.

Shoes

2009-05-28T22:00:00.007-05:00

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

2009-05-15T22:49:00.004-05:00

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

2009-05-09T22:57:00.002-05:00

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

2009-05-06T13:40:00.002-05:00

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

2009-04-28T22:29:00.006-05:00

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

2009-04-21T21:52:00.002-05:00

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

2009-04-14T14:06:00.005-05:00

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...

2009-03-24T21:34:00.004-05:00

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

2009-03-15T21:26:00.007-05:00

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!

2009-03-06T20:22:00.005-06:00

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

2009-03-04T19:59:00.004-06:00

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.

10 Honest Things about Myself

2009-02-27T22:09:00.003-06:00

So, a fun post I got from my dear friend---can I really be totally honest???

1. I still feel daily regret for my VBAC decision and so much guilt for not enjoying Aaron's 1st year more...I can honestly say there was not very much about the first 4 months that I found enjoyable, though I love my little boy with all my heart.

2. I don't understand people who say regarding any type of chocolate dessert--"It's just too rich for me." What!?!?!

3. I listen to right-wing talk radio. I don't know why. Some weird form of masochism.

4. I use to feel pretty confident about my appearance, but lately it just makes me shudder.

5. I have always been happy living in Michigan but lately find myself fantasizing about starting over somewhere else.

6. I took my husband's hand on the night we met at the bar, walking down the street. He said, " Oh, so you are one of those girls" I was absolutely mortified, especially since I actually really didn't hold near total strangers hands on a regular basis. Thinking about it now, I honestly can't remember the last time we held hands walking down the street...but I'd still like to!

7. I occasionally put on the TV for my kid so that I can finish a chapter. Boy, that one is hard to type!

8. I took care of a patient with food allergies and poor growth before Aaron and was very inwardly critical of her mom. I feel bad about that now.

9. I still have flashbacks of Aaron's birth on a regular basis. Especially in my bathroom.

10. I honestly can't think of another honest thing that I am willing to share with the public!

Fathers

2009-02-16T22:11:00.003-06:00

Well, we are taking a break from our regular programming, a celebration of the lives of my two littlest men, to celebrate the life of the er...most senior man in my life, HAPPY BIRTHDAY DAD! BTW, these are in no particular order and in no way are meant to be exhaustive-

I am thankful for my father because...

1) He gave me life. Well, as we know, Mom's work on that one was far more extensive, but still...she couldn't have done it without him :)

2) He loved and valued my sister and I so much that we would never settle for less from any other man.

3) His arms were still a haven, after all these years, during some of the darkest hours of this last year.

4) I love that my dad chokes up so easily.

5) Few people can crack themselves up as well as he can :)

6) He works tirelessly to provide for his family.

7) He is amazing with babies and small children, and my boys adore him.

8) He is really smart...and maddeningly right.

9) He had a really close call a few years back, and although I wish he would take better care of himself, I am so glad he is doing better and has quit smoking!

10) He has always demanded the best from us AND has always believed we had it inside us to achieve anything.

11) He taught me how to drive, how to play Blackjack, helped me with my math homework, taught me how to ski, funded our horse show years, cared whether I saw R rated movies, always lends a hand (or a dollar), moved me into/out of dorms/apartments/houses, helped sweep up the Dunkin Donuts....and more....

I love you Dad, Happy Birthday!

Cooling cap update and fun video

2009-02-13T09:19:00.006-06:00

Well, as Aaron approaches his 1st birthday and does something new everyday, I am reminded constantly of where we were just a little over a year ago. I remember that last month of being pregnant, and everything that followed...
I recently emailed the wonderful physician who runs the cooling cap program at the hospital Aaron was transferred to in order to find out what we can do to help the program. Here is his response:

Lauren: It's good to hear from you. We continue to cool babies with suspected HIE, averaging just over one a month. Former clinical trial sites in North America, Europe, Australia, New Zealand (and I think Israel too) are generally offering cooling using their former study protocols. Nationwide, beyond the former study centers, I suspect there is increasing use of cooling, but it is hard to get good data on this. I recently asked the Vermont-Oxford Neonatal Encephalopathy Registry, which tracks use of cooling, if they have up-to-date data for 2008 but haven't heard back yet. Within the region we've seeded centers in Grand Rapids and South Bend. Further afield I've helped centers in Montreal (which serves most of the province of Quebec), Honolulu (covering all of HI) and Kansas City get programs started.
You'll be interested to know that results of two more clinical trials were presented at the meeting "Hot Topics in Neonatology" in DC in early December. These European trials (the TOBY Trial and the NeoNeuroNet trials, both of whole body cooling, corroborated the results of the first 3 trials, i.e. cooling decreases both death and the burden of disability in survivors, but there is still room for improvement. We are getting the sense that it's probably not the mode of cooling that matters (i.e. head vs. whole body), as much as just getting them cooled. One more major randomized trial (ICE, that stopped enrolling July 2007) will report results about a year from now. That will be the last of the trials in which cooling is compared to a non-cooled control group, except for an NIH network trial that is evaluating the utility of cooling in babies who present later than the currently accepted time window of <6 hours from birth. They are recruiting babies that for whatever reason don't show up until 6-24 hours after birth. We hope to join that trial network this year.
Where is cooling going from here? There are a couple of directions in research, both focused on improving on the results of cooling.:1. Lab: (Pediatric Neurology) and I are doing experimental work in our lab evaluating combination therapy with early post-HI prophylactic anticonvulsant and cooling (several different FDA approved drugs), to see if there are combinations that are better than either drug or hypothermia alone. This is funded by a 2-year NIH grant and some gift funding from a family of a cooled baby from several years ago. The hope is that this work will help select the best candidate anticonvulsant for a human clinical trial of the same concept. Other groups around the world are evaluating other drugs in combination with hypothermia.2. Clinical: Pediatric Neurology and I have begun a study (funded it part by a grant from the Child Neurology Foundation) to simultaneously evaluate EEG activity (background and seizures) and brain metabolism (using a new monitoring modality call Near Infrared Spectroscopy or NIRS) throughout cooling and re-warming, to determine whether these techniques put together can enhance our ability to predict later outcome while we are still in the course of cooling. The idea is that if we can predict a group of babies who are destined to not do well with the current 72 hour cooling protocols, we could in the future propose new studies in those babies, for example comparing outcome after 96 or 120 hours of cooling vs 72 hours. The Child Neurology Foundation funding is sufficient to pay for the EEG and NIRS monitoring in the neonatal period, but we are now writing grants to seek funding for the 18 month developmental follow-up of these babies. So that is an area in need of support.
Please feel free to share the above update with your support group. I don't know everything that is happening but I am pretty well connected with the current state of cooling.
On your final point, we were glad to be able to help, and thank you for entrusting Aaron's care to us, at a very difficult time, and with a very new technology.

So, I am currently looking into ways to help fund a small part of this research, now and in the future. Research in Pediatrics is generally very hard to do, and actually does not get the funding you might expect. As you can imagine, it takes a leap of faith on the part of researchers, and more importantly parents, to even allow the research to be done. (Can you imagine the first brand new, shell-shocked parents who were offered the option of basically freezing their tiny babies with no idea what side effects or outcome there could be?!?) Then, you have to find ways to pay for it. And the basic science, non-glamorous, lab research is so important. Before the cooling technology made it into any NICU, lab animals were deprived of oxygen, cooled, and then studied. I am not sure, but I am guessing some of them were sacrificed to study the effects on the dissected brains. This is the reality of scientic progress and I am so grateful for all of it. I don't believe Aaron's story is possible without it. So, I will be dedicating a part of my life from now on to try and promote this cause. I think there is so much potential. Perhaps cooling may help babies who have a neurologic insult in the first month after birth (like a near crib death or shaking or an undiagnosed heart defect). Also, I think there is a lot of room for spreading the use of the technology to more kids.

Here is a new video of Aaron and Sam playing one of their favorite games. It makes me a nervous wreck, but they have so much fun. I think I need to get Aaron a bike helmet...

Another appointment...

2009-02-10T10:40:00.002-06:00

Boy, my lens has certainly changed since becoming primarily a parent of a patient, rather than the health care provider, as of late. Generally, I still think we kiddie docs provide very good care and we have been blessed to have great doctors, some of whom are also friends. But, I just never realized how much energy gets sucked into the doctor visit vortex when you have a child with chronic problems. First, there are just the logistics of getting everyone to the visit, working around work schedules and naptimes and mealtimes and day care. Then there is the anticipation of (in our case) "Did he gain weight?" and the comparing of different opinions. When you have a visit every few months with a healthy infant, the doctor visits are mostly something to look forward to. With Aaron, it hasn't been that way. There is the anxiety around whether he's grown, how an outside person perceives his development, whether there will be some new concern lurking around the corner. Then the reports back to the grandparents. My anxiety seems to have mellowed out to just a feeling of general fatigue and numbness lately. I think I have finally achieved some of that "even keel" thing that Matt has going, not too much despair about not-so-great news, not too much anticipation or excitement about better news. No, I didn't start Prozac...Anyway, a newfound increased respect for the special needs parents of the world. What we are dealing with is not nearly as complex as some of the kids I have seen, and I am so impressed by the strength of those parents.

That said, today's visit was with our dear allergist. He is great---and has been so honest and helpful from day one. Aaron still has many blood tests for allergens pending, so we will know more in the upcoming week. We skin tested only to milk, soy, sesame. The doctor thought it was too soon to see any significant improvements in egg, etc, so we didn't put him through that. He had reactions to milk and sesame (which explains the hummus rxn, it was the tahini) but not to soy. So, good news, we get to try adding soy formula in slowly starting this weekend. If he tolerates it, we will no longer have to spend so much money on special formula and we can try a whole host of new foods. Unfortunately, Aaron was down 2 ounces from his visit with our PCP 2 weeks or so ago. He has of course been sick with a cold and ear infection since that visit. He prob lost some weight and is gaining back---we'll see. Our allergist thought now he should definitely have the endoscopy in March, and he had pushed it prior to this, so I guess we should start preparing ourselves that it has to be done. Here is a link to info about EE-
http://www.neocate.com/aaa_neocate/0,478,156,150,89,0.ashx

On other fronts, Aaron was seen by the speech therapist this week. She thought he fell within the normal range. She thought he had made great progress, as do we. She even gave him credit for quite a few "words". He seems to be saying "Doh" for dog, and "waddat" for what's that. He also seems to be saying Mama, sometimes, when he feels like it :) It is great.

New foods to try this week- Rice Crispies with formula mixed (have to find a new breakfast food, Aaron seems TIRED of coconut yogurt) and pure coconut milk (as recommended by the doctor) Unfortunately, due to his seed allergy, sunflower butter will be out for Aaron. Too bad as it is Sam's favorite!

STEPS!!

2009-01-30T22:08:00.004-06:00

I am, for once, without words. Joyous tears only. It's not a great video, but the best we could do.

Updates- Warning-This is a not so positive blog

2009-01-29T23:37:00.005-06:00

WARNING: If you are a person who insists on positive thinking and gratitude at all times, the following blog may be hazardous to your health.

Well, I realize that I haven't updated the blog on Aaron's latest medical visits for a while. I have been consciously trying to not fixate on medical stuff and my anxiety on this blog, but really, it's just a form of lying by omission. Is that OK? I am not sure. One side of me thinks that I need to consider carefully how I frame this year, in case Aaron ever reads this, and that maybe by writing the happier side of things, I will focus more on the positive. Another part of me feels stifled all the time. I know that I should be (and am!) grateful for his amazing progress. I know that things could be so much harder. I know that no matter what, my love for Aaron is immeasurable.

But still, I am so scared so much of the time. Scared for his future. Watching his development. Scared that I am over analyzing him. Scared that I will make the wrong decision. Scared he won't be able to....(fill in the blanks yourselves, my mind creates so many possibilities) Scared Sam will resent Aaron, resent me. And I am so exhausted by the fear. But I can't always control it. I struggle to get to "So what" but I fail more often than I'd like to admit.

I have so much self doubt. Sometimes I feel like my sense of self was torn in two along with my uterus. I question every decision and wish someone else could make them for me.

I guess that brings me to the medical/developmental updates...

The most important is the recent GI visit. The specialist recommended endoscopy to look at and take biopsies of his esophagus to look for something called eosinophilic esophagitis. He wanted to do it in late January, but we thought he was starting to do a little better. We talked it over with our PCP and Allergist, both thought waiting 6 weeks or so would be fine. You know, they talk about all these rare complications, but I am a little jaded about rare complications. And in my heart, I think he probably did have this disorder before I changed my diet while pumping/started special formula, but I think now his problems are mostly psychological. But...it is still so puzzling that he doesn't get hungry. And the feeding psychologist won't see us without some medical workup. And I don't want to miss something causing him pain- so if things don't turn around by March, we have an endoscopy scheduled for the 17th. Of course in the meantime, he has had the stomach flu, a cold and an ear infection, and has stopped eating pretty much any solids.

An aside, for those of you questioning what the actual problem with Aaron's eating is. Let me describe a typical day in feeding- starting at midnight- Up at 1ish to eat, takes 4 or so ounces easily because he is half asleep, up again at 5ish, again takes 4-5 ounces, up at 7, breakfast around 830, he used to take a 1/4 of a cup of coconut yogurt and oatmeal mix but now he will only eat about 5 blueberries and 10 cheerios. He also takes around 2 oz of formula in his cup. I spend 15 minutes trying to encourage the coconut yogurt (he can't eat dairy or soy and used to like the coconut yogurt) but usually throw most of it away. It is only available at whole foods at $2 a pop. Then a sleepy 3 ounces or so. Nap, play. Lunch around 1230 or 1. What I have tried, my own ideas and others includes: Avocado, with and without salsa (OT says try spicy foods) Pea soup with added food processed meats, homemade chicken noodle soup (all the store bought ones have egg/milk), Lunch meat, hot dogs, Chicken puree, meatballs with ketchup, homemade mashed potatoes, sweet potatoes, summer squash, butternut squash, carrots with brown sugar and butter, acorn squash, spicy taco meet, tater tots,green beans, broccoli, french fries, sweet potato fries, homemade banana muffins, applebutter on toast, food processed and whole chicken nuggets, pot/roast or stew in the food processor, rice, sorbet. All of the prior things of course have extra margarine and or Canola oil or Duocal carefully added. What Aaron actually routinely eats is- crackers or bread, approximately 1 cracker or 1/4 piece of bread, and 10-15 bites of pea soup, 5-10 blueberries or one chunck of banana. What Aaron has eaten in the last 2 weeks for lunch is two nibbles of cracker or bread. Another sleepy 3 ounces before afternoon nap. Our afternoon snack is sometimes more sucessful, he often has another 2-3 ounces of formula and some crackers or animal crackers. One day he ate a whole cup of peaches. It was so exciting. He has never touched them again. Then dinner, repeat lunch. At every meal he conveniently models my latest food discoveries in his hair and all over his body! And, surely because I once mentioned a blueberry facial I had with my dear friend, he often treats me to fistfuls or spoonfuls of his food thrown at my face. An outside observer might think that the fact my child is covered in food products might mean he actually eats food-but they would be WRONG! Dinner is much the same. Then 4 ounces at bedtime. Lather, rinse, repeat. Get ready to give him the bulk of his calories at night. It is so wrong, the antithesis of good pediatrics, but I fear he just won't get any calories if I don't feed him at night. My good friend recently bemoaned the fact that her not yet 3 month old is not sleeping through the night. Yes, that and she is a size 4---good thing I love her so dearly!

So, not surprisingly, noting the above, Aaron is not gaining weight. At last check a couple of weeks ago he was now at the 5%ile for wt. His height has been better, previously at the 50%-75%,now at the 25th. However, we have continued to steadily fall. IF he can just stabilize and start to grow at a new centile, even if it is the 5th or 10th, that would be great. The nutritionist commented that he may just be "genetically inclined to be slender" Hardy-har.

We have upcoming wt checks and allergist visits. Our speech therapist visited and we are still working on signing. He tests within the normal range on her scales for expressive and receptive language (different from the results at the developmental doc). My view on that is that every day he seems to understand more and say more. I think if he weren't being so closely scrutinized, there probably wouldn't be any concern. He is doing so well with gross motor skills (Beaming mom) that our Angel PT won't come until after he turns 1.

So, that's the latest. I am at a loss for how to help him with eating, and just hope it will slowly turn around. Fingers crossed. Promise to be more brief and more upbeat next time...until then, good night.

HAPPY 5th BIRTHDAY SAM!

2009-01-23T00:54:00.002-06:00

5 years. My baby is 5 years old today. 5 years ago, they handed me a squinting, bundled 7 lb miracle and said, "Here is your son." Son?!?!?!?!!!! Hmmm, I thought. Ponies, Barbie dolls, backyard synchronized swimming, sisterhood, tights, braids...that I know. Can I do this well? Can I be what he deserves? And so, my reeducation began. I held him to my chest and my heart has never beat the same. Every beat, filled with him. Pride, worry, joy, laughter, tears. My eyes have not seen the same. All politics became local, every war, heartbreak, mother's soldier seen through the prism of him. My ears fill with his voice, with the questions of ENDLESS curiousity and many days I hear my own voice eerily reflected in his. And strive to do better, to be more patient, speak more gently and wisely. To be more proud of what I hear reflected back.

My mind fills with new facts. I watch more baseball, football, basketball than ever before. I sit on the sidelines of soccer, teeball, basketball games and watch with ridiculous pride as my s0n, MY son exuberantly excels. My kid! We zoom down sledding hills and waterslides together. We play minigolf and he "kicks Mommy's tushie" at bowling. I wear a pirate patch, sword fight, play with talking trains, read books about dung beetles and Berenstain bears. I wrestle and race and shoot and pitch and dunk, though never as much or as often as he'd like.

I worry. I thought I worried before him, but that was just the minor leagues. At work, I feel I should be with him. At home, I hope I won't disappoint him. When to stand firm, when to loosen up, when to push, when to step back? Are we doing right by him? Are we worthy of this amazing gift of being his parents? He is so sensitive, I want to protect that and toughen him up all at once. I don't want the world to hold any disappointments for him, any pain...but I know it will.

I laugh harder than ever before. His silliness tires me sometimes, but is infectious. He argues and cajoles, always thinking one step ahead. He gets the last word more often than not. He is so ticklish, like me, but loves it, egging on his ruthless dad for more, more, more.

His insight, intellect, and compassion amaze me. We talk about his brother, how close he is to walking, and he asks, "Did G-d hear me pray for Aaron?" Every time a beloved family member leaves, it is a trial. I get frustrated and he says, "But I just LOVE people." We discuss the dietary habits of sharks, the election of Barack Obama, the superiority of white sauce to regular spaghetti sauce, the latest Michigan loss, his love of hotels, a possible move to DC, his wish that we saw his beloved aunt every day. I look forward to years of good conversation.

He falls asleep in the car and I carry him up the stairs. He wakes up, but quickly pretends to be asleep, savoring this brief return to an earlier time, egged on by sibling rivalry. His feet dangle below my knees, his body is all angles and muscle. The sweet baby chub is all gone, replaced by 100% solid little boy. I ache and wonder where the time went. I walk slowly up the stairs, slowed by his weight but also savoring the moment, knowing soon I won't be able to carry him like this, and someday he will look down to see me.

Sam made me a mother. I understand my own parents better than I did before. I appreciate them more. My childhood memories become my how-to guide. My mom serves as my most valued professor, mentor. I know with whatever career choices I make next, THIS job will end up mattering most. I relish watching him with them, so much the same as with Andrea and I, and so much different. I am thrilled he has them, and vice-versa.

I love my husband more, and more deeply than ever before. I see him in Sam and marvel at what a special little boy he must have been. I watch them sleep, their profiles so similar and my heart fills. He is patient, kind, full of energy and fun and zest. I thank my lucky stars that I chose so wisely.

I love this little boy. I love the baby he was, the toddler, now the inquisitive pre-schooler. For once in my life, I have a hard time looking ahead. I want to slow the clock, preserve this time. These lyrics keep playing in my head, today, for Samuel....

Fill my heart with gladnessTake away all my sadnessEase my troubles that's what you doThere's a love that's divineAnd it's yours and it's mine like the sunAnd at the end of the dayWe should give thanks and prayTo the one, to the one

Thank you for Sam. Happy 5th Birthday sweet boy!

What next?

2009-01-19T18:30:00.000-06:00

Well, what a wonderful week we have ahead of us. I feel like 2009 is going to be the year of realization of improbable dreams. In the country, an African-American man, a man who reveres learning and cooperation, who picked as a partner a strong, accomplished, opinionated woman is the PRESIDENT of the UNITED STATES! It still amazes and impresses me. I never thought I'd see this day. And in one small corner of this country, on a much smaller, but I think no less important scale, a little boy who came into the world under the most difficult of circumstances, a boy who was expelled cruelly from the womb, whose little mind was starved, chilled and rebelled with seizures---that little boy zooms around the room, barely hanging on to the edges, on his OWN two feet. He seems to also say, "YES I CAN!" I never thought I'd see this day.

I pray today that G-d watches over that great man and that brave little boy. I don't think either will have entirely smooth sailing ahead. I think of a 19 year old mother (so young!) raising a little boy many years ago, trying to teach him how to walk proud and strong in a world that can be so cruel. I hope she is looking down on her son today, marvelling at all he has accomplished. Could she ever have imagined?? Did she dream of such greatness for him? Or did she wish only for his safety, good health, and some smaller slice of the American dream? I say only, but really, these dreams are also not to be taken for granted. These are my dreams and I hope in this year of sweet victory, my baby continues to forge his own amazing path. And I honor that young mother who travelled the world, seemed to see people with clear eyes and an open heart, valued books and learning and diversity, and raised the 44th President. My heart aches that she didn't live to see this day.

Hello 2009

2009-01-08T22:39:00.000-06:00

Well, I can't believe that it is already the 8th of January. I am getting older by the minute, but so are we all right?!?! Better than the alternative... the above picture is of our family at a recent UM basketball game. They lost that one...but they are doing pretty well overall! GO BLUE!

Aaron seems to do something new every day lately. He is standing for probably 30 seconds at a time without holding on to anything. It is the funniest thing, he looks at you to make sure you are watching and grins! He is showing a lot of interest in books and for you parents out there, is really loving our old favorite "Pat the Bunny" He does a few of the activities like scratching the face and playing peek a boo. I remember when Sam started "sniffing the flowers", it was the cutest. He turns the pages very well now. He also loves to zoom his push cart across the house, he really gets going. His rocking horse is also a favorite, MAYBE he will be the "horsey" one. He is also showing some real promise at "throw the ball", though Sam is unimpressed. I clapped today and Sam sort of rolled his eyes and said, "He didn't even get it in the basket!" Lastly, he bites. Hard. Not so cute, but I am trying to be a faithful reporter. His latest sounds include "Oh!, OOH!, W, N, something that sounds like more, something that sounds like good"

His eating is improving a little bit. The Prevacid? Age? Not sure. He will now eat his bottles with less difficulty, sort of back to where he was before the latest downward spiral. And he takes at least 1/4 cup of purees at most meals. We have a slew of evals and appts coming up. One encouraging thing I have been noticing this week is that he is actually getting fussy at meal times and seems happy to get in his chair sometimes! For Aaron, this is huge. I used to think I could not feed him for days and he wouldn't care.

Sam got the stomach flu yesterday, but luckily it seems to be the 24 hour variety. I hope. I am really really hoping Aaron avoids it. Sam also started swim class this week. I had to practically drag him there, he complained for days about it and the minute it ended he wanted to know, "When can we do it again?" He is in such a daddy phase right now, it is all about daddy. Matt has rock star status, and I am more like a servant! It is actually the hardest thing for me about staying home with the kids...I am totally old hat! Small price I guess :)

This is a recent link to a cool cap kiddo I found, another uterine rupture survivor. LOVE THESE STORIES!

http://www.coloradoconnection.com/news/story.aspx?id=231236

SO WHAT!

2008-12-23T16:34:00.000-06:00

Happy Holidays to all! I know I am Jewish, the boys are Jewish, so please forgive the above pic, I am just a total sucker for a boy in a Santa hat. (Ask Matt!) and I haven't had time to upload Hanukkah pics yet. So from our little slice of interfaith Wonderland...

We have had an uneventful few weeks but somehow it still feels difficult to find time to blog. Sam starred as Matthias Maccabee in the JCC Hanukkah movie and we enjoyed watching him. I am going to purchase the DVD and try to put a link to it here. We had a wonderful first night of Hanukkah with family and I felt so blessed to have Aaron with us, really WITH us. He is so active, it is getting hard to keep up, and gets a little noisier every day.

Aaron was visited recently by Kia and Jess, the OT and speech therapist who again reiterated that he doesn't seem to them to have a "can't" problem with food, more like a "won't" problem. Is that due to old neurologic injury, reflux, old allergy problems or ongoing pain with feeds? No one knows, including me. Meanwhile, he had gained weight, but then lost again and continues to slip on the growth chart. So, we are going to see gastroenterology to rule out a physical problem there to make eating a problem and I am researching infant feeding centers, and basically just trying different calorie formulas and feeding techniques.

I recently had a revelation that I have been TRYING to follow. I was obsessing one day late at night about Aaron's feeding issues and what that might mean for his future, and the possibility of significant developmental delay and what that might mean for his future. Then he woke up and we were snuggling in the chair and he looked up at me and I felt such overwhelming love for this little person, and I thought SO WHAT! I love him so immensely, everything about him, and so I forced myself to think through all the scenarios I was worried about. And you know what, no matter what, it will be OK. We will figure it out. I wish that this would have come more naturally or sooner to me. I look at my friend Christina who is open to the idea of adopting a special needs child and I marvel at her heart and wonder what is wrong with me. I think some of it is a need to control everything, some of it is this guilt that I carry around, some of it is genuinely wanting the very best for Aaron, and the rest I'd probably need therapy to figure out. But in any case, it has been liberating to think- SO WHAT.

That said, I am still very worried about his eating. But I am trying to channel that worry into productive ways of helping him. I try to "relax" about his eating, but I still am the one who needs to feed him every 3-4 hours and it continues to be a challenge. Well, we will just take it one day at a time.

Oh, one more development. I am heading back to work on a more frequent basis this winter. I am pretty happy about it. I won't have my own patients back, but I will have a regular schedule one evening and one afternoon a week.

Best to everyone. Happy Holidays from me, Matt, my little Matthias Maccabee (Sam as the father of the Maccabees, planning strategy seems somehow appropriate) and our little underdog Aaron "Judah Maccabee" Jane, also seems appropriate, kicking some proverbial ass!

Snow bunnies

2008-12-08T23:13:00.000-06:00

Well, it was snowy in Michigan this weekend. The boys suited up and went out sledding. I know at some point, I need to stop thinking this way, but every time the kids do something so "normal" together, I am just overwhelmed. Aaron was fussy until we made the sled GO, then of course, our little action hero was all smiles.

He is utterly fearless. Pam, his PT was here this week, and we were laughing about that. Now it is not enough to crawl through his baby tunnel, he wants to climb ON TOP of it. With Sam, we had a certain level of comfort because he is shallwesay the cautious type. We are in for a whole NEW world. I remember when our eldest niece would come over and climb on the BACK of the couch, and I'd think that it would never occur to Sam to do such a thing. Somehow I think all that and more might occur to Aaron! Anyway, Pam was not very worried about the hamstring tightness and very encouraging about his progress. He really seems to know her and perked up immensely for her visit.

Feedings continue to be a struggle. We tried a med to increase appetite, but it didn't work and made him drowsy. I have nothing more to say- there's really not much new. Pam is going to send the OT over to re-evaluate him.

Since I have stopped pumping, I have been spending more time with Aaron at the last feeding of the night. He dozes off, then wakes and eats a little more. I sing, he plays with my hair, we snuggle. It is all so typical, but it is something that was missing before in the rush to get to the pump, do the dishes, etc. I think we both actually ENJOY that bottle. I wish they all could be like that!

Sam out of nowwhere today remembered something about watching the Pistons with Aunt Andrea while I was in or at the hospital. And then, at prayers, he thanked G-d for helping Aaron crawl. I am sure there is more going on in his head about the last 9 months than we will ever know. We went to the science museum with our dear "Auntie" Chris this week, so maybe all the ambulance talk there brought it up.

Well, Aaron is clearly understanding "throw the ball" and "give kiss" and I think my mom is probably right as usual and he may know to look for mama and daddy. Today, I said let's find Sam and he headed right toward him.

Well, on a last note, I received the most amazing email from an old friend today via my new Facebook account. We had grown apart and had some "bad blood" in what now seems like ancient history. Well, she read the blog link and sent me a really really nice note about it---it was a very pleasant, very big surprise. I guess that's the gift of technology and sharing the story.

Time flies

2008-11-30T23:13:00.000-06:00

Well, it has been a long time since my last blog. Sorry for the random photo twist, I can't figure out how to turn it. That's Sam and Aaron at the zoo, us with Andie in DC.

This month has been so crazy. Shortly after my last post, Matt's grandmother died. She had been ill with cancer but it still seemed to come suddenly. The "spitfire" older woman is such a cliche, but she really did have a lot of chutzpah. Ironic choice of words in speaking of such a devout Catholic! So, we packed Sam off to Bubbe and Saba's house, and packed Aaron up for his first roadtrip to pay our respects. He did very well on the road---so well that I regret not taking him sooner so she could have met him. I also wish he could meet his Gold great grandparents, but I don't think we are ready for that trip to Europe! Matt and I enjoyed the time together, despite the sad occassion, and the one-on-one time with Aaron.

Anyway, right after that, we went to visit Aunt Andrea in DC. A wonderful time was had by all- and again, Aaron proved to be a surprisingly good traveler. Sam, of course, LOVES hotels, planes, subways and all things having to do with travel. Not to mention his love for Andie and "Shawnie". He experienced room service with Bubbe and Saba on this trip---the kid will be accustomed to the finer things, he better earn some dough! My mom and sister and I went to see Tina Turner. She is an inspiration. She has beaten the odds with such class and verve. We bought the tickets shortly after seeing Tina on Oprah months ago. I remember the day so clearly- Aaron had a pretty good day, and we were dancing around to Proud Mary, and I was laughing, really laughing, and I couldn't believe I could laugh again. So, I will never forget seeing her with my mom and my sister.

Aaron continues to amaze. On Thanksgiving Day, he walked behind a push toy at least 10 steps. I think he wanted to keep up with his cousins. He is now clapping, when you say "YAY" and waving like crazy. His 5th tooth, a lateral incisor, is now in. He looks so cute with that big grin! We went to see the developmental specialist last week. It was mostly a good visit. She called him a miracle repeatedly. Doctors don't throw that word around. I should know :) She thinks his muscle tone is now normal in his arms but he still has tightness in his thighs. She noticed that he doesn't like to sit, probably it is not super comfortable for him. I disagreed at first, but after watching him, she has a good point. He often kneels or sits sideways. I think he has been so active, I have slacked off on stretching, but since that appt, we are stretching lots. This was the first time that he scored LOW rather than MODERATE risk on the test assessing neuromotor development! I was SO excited to get out of the MODERATE word. He was a little behind on speech, expressive more than receptive based on her questionnaire to us. I am trying not to read too much into that. She thinks at a year, we should switch from mostly PT to mostly speech therapy. There was also lots of weight/eating discussions, which I will spare everyone for now.

With how much Sam talks lately, maybe he just can't get a word in edgewise. I swear, one day I am going to write down all the Sam quotes for the day, and just type them in verbatim. He is so cute and funny and precious right now. We went on a "date" last night to dinner and to see Madagascar and we had the best time. Age 4 is flying by and I just want to stop the clock.

Here are some recent videos... Aaron pushing his cart with Sam's encouragement. They are playing "together." PLEASE turn down the volume, I am speaking in an especially annoying voice in the beginning. It is about 2 minutes long.

The wave

2008-11-09T21:25:00.000-06:00

Well, I should document all the latest Aaron news. He now has 4 teeth! I decided a long time ago not to write in a baby book about him for now, so I am going to try to record that kind of stuff here. He is standing up against everything. He likes the dishwasher and the dryer especially. He also likes to pull up and stand "face to face" against anything that reflects, and give himself kisses. He is even starting to cruise a few steps here and there.

Pam, our WONDERFUL physical therapist came this week. She now comes about once a month. She was really pleased with his progress. We now have "big boy" exercises to do, working on climbing and cruising, stand up and sit down. I have to work on finding time between chasing him and feeding him to do his exercises. Of course, we WILL do them. Aaron will exercise, me hmmm...not so much.

Most exciting, as referenced in the title...Aaron is definitely waving hi. He has done it a little for a month but tonight he clearly and repeatedly waved to my mom and dad. Won't wave to mommy of course. That's OK, I'll take it. It was beautiful.

Gratitude

2008-11-02T01:30:00.001-05:00

With thanks to my dearest friend, who wrote about me and the boys on this topic. We have had a good couple of days. On the advice of Aaron's doctor, I am trying to chill about his feeding for a few days. Because of that, I have specifically decided NOT to write down how much he takes (this feels funny because I have done that since the day he came home from the NICU, every day for 7 months) and also not to talk about his feeding amounts with anyone except for Matt. (Because Matt is trying to do more feedings, also doctor's orders, I think we have to talk about it). So, I will blog at the end of this little experiment and let you know how it goes.

Anyhow, so I have been trying to celebrate the wonderful things we are beginning to know about Aaron. To wit...

* He is fearless. He is so brave and persistent.

* His laugh is adorable.

* He is already starting to play "chase" with Sam. I so look forward to all the games they will play in the future.

* I love how he snuggles in the crook of my arm. Even in the middle of the night :)

* His beautiful new toothy grin

* His zeal for exploring everything

I could go on, little man, you are a delight and I am mostly grateful to be the mom of TWO wonderful boys.

More worrying...

2008-10-28T22:29:00.000-05:00

Here is a photo from Aunt Andrea's visit, Aaron being a sweet little snugglebug with A senior! (she calls him little A, but I will refrain from calling her Big A! Love you sis!)

Well, I debated about what to write about the difficulities we have been having as of late. I have decided to record how we are doing and how I am feeling now, so that HOPEFULLY it can all seem so overblown and remote in the future. Like how I use to worry if Aaron would ever sit unassisted, etc.

Anyway, Aaron weighed in last Friday at 16 lbs 13 ounces, a 7 oz gain in 2 weeks. It put him at the 13th percentile for weight, 90th for height. All in all, it was a nice gain, compared him only gaining 1 oz in the prior month. I really think it was due to the Duocal caloric supplement recommended by the allergist. So, I was ready to exhale and stop worrying so much about his eating. He was taking around 28 ounces a day, plus some solids, not great, but some. Since THE DAY of his weigh in, he has basically stopped taking more than 3 ounces a feed. (Before this, he was routinely taking 4-6 ounces, albeit with a lot of encouragement) He has a tiny cold, so maybe that will go away and his eating will get better. However, a big part of me fears that he has just now decided to stop taking his bottle. I worry that I pushed him too hard and caused his dislike of the bottle. I just don't know what to do. The feeding specialist won't return my calls, but initially had encouraged me to be persistent with his bottles. I am getting so tired of trying to coerce/coax him to eat every 3-4 hours. The only slight bright spot is that he seems to take solids slightly better lately (maybe because he is starving!) He really seems to like this "yogurt" made from coconut milk. At this point, I would feed him pina coladas if he would just take them! Again, maybe I am just worrying for nothing and he will turn the bend and start eating enough to grow. I feel like he just HAS to. So Aaron, if you are reading this when you are 10, and you are now big and strong and chunky, have a good laugh at your worrywart Mommy, OK??? And have a special treat snack with my blessing...

Say what?

2008-10-22T23:05:00.000-05:00

Well, Aaron had his repeat hearing test today. He had passed his test as a newborn, but because of his history, he had a 6 month follow up, which he did not pass. They thought it was likely more due to behavior. Today, we repeated that. He passed the part of the test that does not require cooperation (beyond not crying, which he couldn't do last time). That means that any hearing loss would be mild at most. The second part of the test required him to look toward tones of varying degrees of intensity. He did better, but still didn't pass. I think he was bored by the "reward" of a flashing stuffed animal they get for looking to the sound! Due to that, he will need a visit at one year old.

His eating is about the same, maybe slightly better. I think he is teething, because he has not slept more than a 3 hour stretch all week and I see 3 little nubs on top.

Funny Sam story.... he pushed me after I had the audacity to beat him at basketball tonight ( I usually let him win, but he was ripping on the girls team, and my feminist leanings kicked in!). He actually surprised me enough to knock me over and Matt really got after him. He had story hour taken away, which was very upsetting to him. However, after he calmed down, he changed his tune, saying that he needed a "break" from story anyway.Anything to end up in the right...can't imagine where that comes from :)

Feeling defeated

2008-10-18T22:38:00.000-05:00

Aaron in the forbidden exersaucer, but just for a few minutes, out in the yard!
Sam still wears M despite the humiliation that is this season.

It has been a very hard week. Aaron's eating continues to be a struggle. I have had to start getting up in the middle of the night to pump again, but MAYBE it is helping and he is eating a tiny bit more of his bottle. However, he gets less interested in baby food everyday. I just don't see how he is going to grow like this. I keep waiting for the day that he turns the corner, but it is so frustrating. He seems to like to feed himself (though he is too young to really do it successfully) so maybe if we can just hang on a little longer...

I just don't have any more ideas left. I always felt I could get him to eat if I just tried hard enough, was enthusiastic enough, etc. Now, I am starting to think I just have to see what he does without all the prodding. But, it is so hard to watch him stop after 2 ounces. How can MY KID not like to eat?? We seem to have opposite problems, my weight goes up as his goes down.

We are weighing in again Friday. Fingers crossed.

Fabulous 4 year old

2008-10-16T09:21:00.000-05:00

This is a recent letter excerpt from Sam's teacher...

I'm writing this note to let you know how helpful Sam has been at school lately. He is always a very good listener. He has been working very hard at cleanup time especially. He tries to keep the children motivated during this difficult time of day. He has shown tremendous leadership with the younger children and is setting a fantastic example of how to behave...
His problem solving skills are also developing. When there is a conflict, Sam is always calm and uses his words. He also shares a lot of ideas about how to solve other problems in the classroom. He always treats other children in teh room with respect. He is a very good boy who makes good choices. We really enjoy having him.

We are so proud. It has been a trying time for Sam with all the attention focused on Aaron lately and he seems to be handling it really well.

Here are two golf videos. The putt was awesome but his celebration is just too much. Listen to my dh in the background. Too cute.

Aaron Unleashed

2008-10-11T23:06:00.000-05:00

Well, my nickname for Aaron in the NICU was Cinderella Man, a reference to the great Russell Crowe movie where he is a boxer during the Depression who wins against all odds. Apparently, the fighter analogy fits! And it has served him well...he fought for his life...he fights to beat the odds stacked against him...

And he fights his MOTHER!

So, I have always felt that parenting required you to be a sort of benevolent dictator. With Sam, that is mainly the case (though he is feeling his oats lately too!) However, there is clearly someone in charge of Aaron's life and that person is, drumroll please, Aaron.
He sleeps when and where he wants to (generally hardly ever and in my arms) he eats when and how he wants, you get the drift. Today I tried to feed him in the highchair, no go. His Sabba tried to feed him, no go (and this man could feed the anorexic Olson) Then, I put him in Sam's booster, and he ate a really great meal. He is so independent. And a TEMPER. We have put up cushions in the living room to box him in, which he hates!! Hates. He now can fling himself over the cushion, headfirst.

So, quite a kid. I hope he is doing all his rebelling now. On a more troublesome note, he is not gaining weight. I took him to the office and he has only gained an ounce since his 6 month check.
His growth chart is not pretty. So, I spoke to his allergist and he has to stay on the Neocate formula (thus, I am still pumping and going soy/dairy/nut/egg free) and he advised us on some ways to get more calories to him. The general consensus seems to be to encourage more solids. Fine with me, but as I said...I am not running the show. I am trying really hard not to obsess over it.

In my next blog....I am going to excerpt a wonderful letter we got about Sam- he is also a superstar!!!!!!

Signing off...a dreary UM fan

Pumping woes...continued

2008-10-03T22:21:00.000-05:00

After some initial gains in Aaron's feeding after discontinuing egg, milk, and soy in my diet, we went ahead and started soy formula, mixed with breast milk. (Aaron's allergy testing for soy was mildly elevated on one test, normal on another). At first, all was well...but after about 10 days, we started seeing some return of his gagging, feeding refusal, etc. So, now I am back to pumping more because he won't take the non-milk, non-soy formula well and back to not eating soy. It's getting a little old. Warning: the next paragraph is blatantly LaLeche league material, pro breast feeding. If you are going to roll your eyes or laugh, do so privately! If you are sensitive about not nursing, skip.

So, what I wanted to say is...I really, really enjoyed nursing Sam. It's hard to explain to those who haven't breastfed and plenty of nursing moms never feel this way, but I did. And because day in and day out I talk to moms about the pros of breast feeding, it never occured to me that I wouldn't be able to. I miss almost everything about it. I miss the snuggles, the milky smile, that mom-baby pair and exclusivity of being the one and only one to provide the baby's preferred feeds. I miss the ease of always having food available. I miss knowing that I am doing the best for my kid. I miss sitting at the mall with the other nursing moms, kind of an exclusive club of sorts. I miss feeding sitting indian style at the park with the baby in my lap. I miss the guilty pleasure of having to stop whatever I was doing to feed the baby, laying side by side in my bed or on the couch. So I think part of the reason I have kept pumping is that in addition to believing strongly that breast milk is best for Aaron, he and I didn't get to have that experience, and the minute I stop pumping, that chapter of my life is over. And I hadn't been ready to say goodbye.

But, recently, I finally was ready. And now....I can't stop. So, I am blogging now waiting for my date with the pump at midnight. A poor substitute for Mr. Baby Right...que sera...

A sweet September

2008-09-29T23:13:00.001-05:00

Tonight begins the Jewish new year and we have had a very good end to 5769, a year that started well (this was just about the time last year we had our ultrasound and found out we were having a baby boy), got very rocky, and seems to be ending on a high note. I am very grateful and prayers held special meaning for our family today.

Our appointment was great. The behavioral specialist was so pleased with Aaron's progress, and really surprised! She said that he has some increased tone in his arms and legs, but that doesn't seem to be affecting what he can do. Most wonderfully, she thinks he will walk and even run. There is no way to convey in words how I felt...I am not even going to try. I am so proud of my little Cinderella Man and stand in awe of his determination. The appointment was just before his daddy's birthday, (Happy Birthday Honey!) and Matt said it was the best birthday present in the world.

Since the appointment, Aaron has began to pull to stand on low things. He is a little dynamo. His Aunt Andrea was here for the holiday, and she is amazed by him too. Since she hadn't seen him in person for a while, his progress was even more dramatic for her.

Feeding continues to be challenging. His solid foods have dropped off, but I seem to have found a trick or two today to help. I am waiting to see if the soy formula is completely acceptable to his system before I decide what to do about pumping.

Sam is great. I have a video of him golfing I will add on next time. Until then... good night!

10 Things I Know for Sure

2008-09-23T23:40:00.001-05:00

1. You cannot plan for every contigency. As much as I might like to. I thought I could. I thought I could control my life. I was WRONG!

2. You can't predict the future. Really. At all. Since as of late, I am batting whatever a bad batting average is, (help me out Sam) I am really doing so much better at staying in the moment. This does not stop me from daydreaming about maid of honor toasts/2nd honeymoons in Jamaica/and I'll admit, the existence of a little daughter for us, but it DOES stop me from getting to much beyond today and maybe next month where Aaron is concerned.

3. When you are at your lowest,if you are lucky like me, no one can comfort you like your mother. That is what I have, and that is what I must be for Sam and Aaron.

4. I really like staying home with my kids. For now (see number 2!)

5. My 4 year old boy is a sweet, sensitive caretaker. On a rough drive home, he sang every song he knew, made every silly voice and face, to try and comfort his crying brother. Long after I had given up. I am not sure what the world does to men to squelch that instinct, but I hope I can help him keep it.

6. Girlfriends, really good girlfriends, are crucial.

7. My husband is a mensch. Even though he tortured me by buying forbidden Jewish baked goods. Too much of that and I'll have to insist on conversion.

8. The country will be better if Barack wins.

9. The doctors who resuscitated my baby, the neonatologists who put the cooling cap on him, the parents who allowed their children to be studied years ago so that this technology is now available, the nurses who watched over him... these people are my heroes.

10. Aaron is doing really well and has more wonderful surprises for us. No matter what the doctor visit tomorrow brings. I'll keep you posted.

Crawling

2008-09-21T23:35:00.000-05:00

So, the most exciting news. Aaron is crawling. I can't really believe it. It is early for crawling and I was even worried that it might be somehow due to increased spasticity, but his wonderful PT Pam said that is not the case. He is so cute and determined, he inches his way around the living room. The video here doesn't really capture it, but it is all I could get after SEVERAL tries, so it is a start. I can remember when I wondered if Aaron would ever sit unassisted- so crawling early is really beyond my wildest dreams. He also sort of pushes up on his legs against the cushions. He is still often on tiptoes with that, but I am DONE making predictions or diagnoses for Aaron. Way to go proving mommy wrong little man!

Sam has had a little bit of trouble with the new development, mostly because Aaron is getting extra attention and into Sam's stuff! Mostly, though, he takes it in stride. We start almost every morning with the following song... sung by Sam

" Good Morning to you, Good morning to you, your brother sure loves you, and your mommy does too!"

What a special person he is.

Heard this week about another cool cap baby. I have been thinking of that poor family and hoping the baby does well. This week at the hospital, EVERYONE asked about Aaron. It is so nice that people care, but it gets exhausting. Thank goodness that he is doing so well, or else it would be even harder.

These are not great videos. One is too dark, but I can't figure how to delete it. The other doesn't show what he can really do. I will try to post better ones soon.

"

Links

2008-09-15T22:45:00.000-05:00

These are a mix of uplifting and sobering links about kids with hypoxic injuries and cool cap. I like looking at both. Even the kids with severe delays are (as should be obvious but sometimes isn't) such individuals and cherished.

This is a happy story about a cool cap survivor

http://www.stuff.co.nz/auckland/4635492a22399.html-

This is one of the study results. This is not the strongest of the trials, but still showed some improvement with cooling.
http://cel.isiknowledge.com/InboundService.do?
product=CEL&action=retrieve&SrcApp=Highwire&UT=000227096800023&SID=2Dh2dP9cLNfM4ci8mKo&SrcAuth=Highwire&Init=Yes&mode=FullRecord&customersID=Highwire

The pilot study
http://cel.isiknowledge.com/InboundService.do?product=CEL&action=retrieve&SrcApp=Highwire&UT=000226406500002&SID=3DM4383H1Mj8cilfOla&SrcAuth=Highwire&Init=Yes&mode=FullRecord&customersID=Highwire

A study of kids with neuro injuries in general with outcomes.
http://pediatrics.aappublications.org/cgi/content/abstract/109/1/26?ijkey=2450d0eb99877066797b4937c2e18c8a988bb896&keytype2=tf_ipsecsha

One of my favorite stories
http://www.natus.com/documents/60099-FLB-EN0727R.pdf

The UM press release-
http://www.med.umich.edu/opm/newspage/2004/coolingcap.htm

This is a friend from my uterine rupture support group. Her little boy had the cooling cap and is unfortunately severely disabled.
http://www.liamsmile.com/LIAM_SMILE.html

This site is so wonderful describing a mom and son with CP and how he has done. He is off to college :). If Aaron has CP, I think this will be a useful roadmap.
http://www.thecpchild.com/

Well, that's it for now. I will probably do this again sometime. I am neurotic about googling these sites.

Milestones

2008-09-14T09:58:00.001-05:00

It seems like that word is always associated with Aaron in my mind, but my parents just celebrated a big one---35 years! Congratulations Mom and Dad!

Matt and I will be married 10 years this summer. I think so far, we are doing pretty well with all the changes this year has bestowed upon us. When I woke up from the anesthesia after Aaron was born, my first thought was "did the baby survive" ? My second thought was "how will Matt ever forgive me?". He says that no forgiveness is necessary---and I have never felt blame from him for one minute, which I am grateful for. I can honestly say that despite the ups and downs of daily living, he has been a rock for me at times, and me for him at times. Not to mention that, thank goodness...we are both voting for Barack! I am glad we aren't a "mixed" marriage politically :)

Heard today about another baby who was sent from SJ to UM tonight for cooling cap. I really felt a pang thinking about that poor baby and family. If they ask me to go speak with her, I will. A fellow physician whose daughter is Sam's age and was cooled came to speak to us, and it helped a little. Of course, you only really care how your baby does, but it does give you some hope.

Rounding at SJ remains hard. The first day of the week is always the worst. Every time I walk past Triage room 1, I remember hearing that slow heart rate and the gasp of the nurses with the blood. I try to block out the thoughts but it is almost impossible. Luckily, once I get to the Pediatrics side of things, I feel better. I am really glad that I stayed over in the delivery side of things after Aaron was born, because the Mother Baby Unit still feels like work turf since I was never a patient there.

Speaking of SJ, last Thursday I ran into the neonatologist and pediatrician who resuscitated Aaron. The neonatologist was the one who told me he survived but gave me all the disastrous news about his condition. I remember she had tears in her eyes then. We were certainly acquainted, but I didn't know her well prior to Aaron. I always thought of her as seeming very confident, no-nonsense, all business. Turns out she definitely has a soft side. I took Aaron to a conference and she was so excited to see him. She practically grabbed him from me to hold him and was amazed by how he was doing. She actually got very emotional. She had told me once before that Aaron took years off of her life (yeah, me too!) and I could tell he was special to her. So of course, I absolutely adore her and will never have words to thank her.

No pics/video today, I will add some soon.

Two steps forward...one step back

2008-09-11T20:06:00.000-05:00

Whew. It has been a rough couple of days. I am not sure why, but Aaron is back to his old hatred of his bottle over the last few days. His eczema is also worse, so I am wondering whether I had an accidental exposure to egg or dairy. The only thing I can think of is when we ordered in Middle Eastern food. I asked about it, but I am not sure how seriously they took my inquiries.

Anyway, yesterday, Sam was home from school for the whole day, and I was so looking forward to spending the day with him. All morning, Aaron cried and fussed. I couldn't get him to take more than 2 ounces. So of course, Sam was left to play by himself again. He is starting to get wise to the fact that Mama always has to take care of Aaron. I was so upset I had to put him down to fuss and call Matt for moral support. I was crying by then too! Finally, I just packed Aaron up and we went berry picking as planned, which was fun. Then Aaron screamed the entire 25 minutes home, despite me trying to feed him several times. When we got home, he ate as if nothing had happened. It just makes every attempt at normalcy difficult. Especially since I am not one to sit home a whole lot.

As usual the afternoon and evening was better. Our babysitter and dear friend came by and couldn't believe how good Aaron looked. He took his solids great. Matt was gone at a meeting and the boys and I had dinner together. Aaron was doing so well with solids that I gave him his first teething biscuit (dairy free) which he loved. He fell asleep and I stayed up getting things ready for the next day. Just when I was ready to fall into bed exhausted, he woke up. He then screamed horribly for almost 2 hours. I was ready to take him for a drive or to the ED because he was nearly inconsolable, when he finally fell asleep around 130 am. He slept for a couple of hours, was up at 330 and then I had to get up to make it to a meeting for work at 530. Then once again, bad bottle this AM. He continues to do well with solids, so that's good.
Maybe it was the biter biscuit...

Anyhow, today, I was pretty exhausted. We had a good experience seeing the ladies who saved Aaron's life, which I will save for another post. He also had his hearing test, which he was not very cooperative for and needs to be repeated in a month. By the afternoon, I felt sick with fatigue and frustration. I have tried hard to not interfere too much with Matt's hours at work, since he is our main earner now, but when he called, I asked if he could come home early. He did- thanks honey- and I just went to bed for an hour and a half. I didn't even make dinner and you know what, we made do! The sleep was indescribably wonderful! I feel so much better and a lot better able to care for Aaron and Sam tonight and tomorrow. I am hoping for a better day tomorrow...

Aaron's Eyes

2008-09-10T00:33:00.001-05:00

Me with the boys and their cousin at the beach

Well, another day of good news. Aaron saw the opthamologist today and he does not have a lazy eye. Yay. He was evaluated due to his history and Matt's family history of lazy eyes. The whole process was tiring as we were there for 2 hours, but I am relieved he won't have to wear an eye patch. The opthamologist had not heard of cool cap (surprising since he is peds opthy) and was very interested to hear about it. He said Aaron doesn't need any other testing until he does the picture chart at the peds office at 3. I quickly ignored that piece of info, I don't like to look that far ahead. Speaking of eyes, I am still not sure what color Aaron's are going to be. They are sort of a greyish blue now. The shape resembles Matt, maybe the color will be hazel more like me. Or just uniquely Aaron :)

Feedings are going much better. Though he is not taking appreciably more EBM/formula, he is taking his solids a lot better. Today he actually seemed excited about his peas and cereal, more like a typical baby. And his bottles are going down more smoothly. The food allergy angle seems to have really helped, so it makes this crazy diet worthwhile. Though I really miss ice cream...not that I NEED it :)

He is starting to get around the living room like a fast inchworm. Sam was my sloth, Aaron my worm! However, he is getting better on all 4s, crawling not too far off. He already likes to crawl to Sam's stuff, which has caused some irritability in big brother. Sam wanted to know if we could send Aaron back to G-d. I guess that question was bound to happen!

Speaking of Sam, he said the cutest thing today...we were getting out of the car and he says, what can I help you carry, Mama? I love that he still calls me Mama, too.

Well, I was able to make a video, but it is really dark, so I am going to try again. I may need to ask my sister's SO for computer/camera advice :).

Gratitude and Relief

2008-09-08T20:48:00.000-05:00

I am so blessed. My beautiful guys recently-

This week has been momentous for us. Aaron turned 6 months old. It has brought back a lot of memories of his birth and feels like a big milestone. Part of that is because the doctors taking care of him always told us that we'd be able to know a lot more about his prognosis at 6-8 months. We look at him now, and he is sitting, babbling, trying to crawl. I honestly well up with tears at least 5-6 times a day at this point. I just am so grateful and I feel this awesome sense of relief. Am I sure that he will run the bases with his brother? No, but I am pretty sure he will walk the dogs. Am I sure that he will talk on time and have no cognitive challenges? No, but I am very sure that he loves and "gets" peek-a-boo games, will probably say Mama and Dada and will have a great time going to Disney someday. 6 months ago, I prayed for his life, 5 months ago, I prayed he would be able to use his arms and recognize us, now I honestly can say that I mostly just offer up prayers of thanks. (Ok, with the occassional wish for an "easy" life for him, whatever that means!)

So, amazingly, Aaron is meeting all of his 6 month milestones. He is one determined kid. The biggest concern from his well visit is his weight. He is at the 35th or so percentile for weight, 85th for height, and 40th for head (yay). My concern is that he has only gained 4 ounces in a month. However, we recently found out that he has allergies to milk/egg proteins found in my breast milk and he has seemed much more comfortable with eating since I went on the elimination diet from hell. Hopefully that will translate into better eating, more calories and GROWTH! He has been evaluated twice by a speech therapist who says his oral motor skills are fine, and we have a new occupational therapist coming this week for another opinion.

Anyway, I feel I am witnessing a everyday miracle (don't even get me started on those commercials with that Sara McLachlan song, I blubber everytime it is on) and whatever the future may bring for Aaron, he is already so far ahead of what ANYONE (except for probably his faithful Bubbe and Saba) expected. I am going to try to add some video of his trying to crawl this week.

Early Months

2008-09-07T23:41:00.000-05:00

Aaron is now 6 months old, and I want to start blogging in "real time" this week, but I want to write a little about those first months at home.

When we brought Aaron home, we felt pretty good about how he would do. His MRI showed "moderate" damage to the motor areas, especially, of his brain, but we were also told the MRI was not entirely predictive and that he "looked good." He was nursing some, and doing OK with his bottles. This feeling didn't last long. Aaron would nurse for no more than 5 minutes at a time, before refusing to take more. He did slightly better with bottles, but still required a lot of encouragement. Worse, he constantly cried and arched, a sign of neurologic abnormality. Every time he did it, I felt sick. While I accepted that Aaron might have special needs, this seemed so severe. I wondered what kind of life my little guy would lead? I worried that he seemed so miserable all the time. He cried incessantly in the bath, in the carseat. I certainly knew babies could be colicky, but I was certain that was too ordinary of an explanation in light of what my extraordinary boy had been through.

I can't describe the fog of gloom that hung over us that first month. I am sure I suffered from some post partum depression. I had flashbacks of my labor and Aaron's birth daily. Matt and I wondered how we would cope with caring for a severely impaired, not interactive child. I worried our entire family would fall apart. I didn't feel I had the energy for anything positive. I felt very sorry for Aaron, but also for myself. Thank goodness I had the support of my parents especially, but also my sister and some very good friends. I tried counseling, but really started snapping out of it for two reasons. First, Aaron started smiling at us! There WAS a little person in there. And second, Sam started showing signs of stress. I still have bad days, but that was my sign that I needed to move forward, and for the most part, I think we have.

I write all this on the off chance that some other mom with a child s/p neurologic injury ever reads this. Don't give up hope! Everyone told me the same, and I could hardly dare to hope...but we are doing so much better now than we were.

Aaron's NICU stay

2008-09-06T03:03:00.000-05:00

This is me holding Aaron for the first time. It was amazing! He was 5 days old.

One of our first photos of Aaron. He is so swollen, but you can see how beautiful he is!

I wish I had time during Aaron's stay in the NICU to blog. The closest I have are the emails we sent to friends and family at the time. I will say now that I felt entirely desperate initially about his prognosis. As a pediatrician, I flashed back on every gravely disabled child I had ever taken care of. In a day, everything changed for us. All of our hopes and dreams for a little brother for Sam, two boys playing together, family vacations, kindergarden, college seemed gone. I found myself bargaining with G-d, please just let him recognize us, please just let him be able to eat on his own, please just let him be able to use his arms. The neonatology fellow told us that we could "hope for normal" but that seemed too much to expect for this gravely ill little boy. I wouldn't even allow myself to picture it.

It was a time of highs and lows. It seemed to me like everytime we had cause to celebrate (he opened his eyes, he came off of the ventilator, etc) there would be a major setback, another seizure. After the cap came off, the seizures continued, requiring two medications to cease. I can't describe even now the despair I felt.

Here are our emails...

Dear Family and Friends,

We are pleased to announce that our son, Aaron Jacob Jane, was born on Thursday, March 6th at 3:22 am. He weighed 8lbs, 3 oz. at birth. Unfortunately, he had a rocky delivery by emergency cesarean and got transfered to the neonatal intensive care unit at Univ of Mich, where he is being treated. He seems to be a fighter and is doing as well as can be expected. We ask you to keep him in your thoughts and prayers.

Lauren has been recovering at St. Joseph Mercy Hospital and should be discharged this afternoon. She is anxious to be reunited with Aaron! We appreciate all of your phone calls, prayers and offers of assistance.

I remember this first email, trying to figure out what to tell people. We wanted to be as positive as possible and tried not to stigmatize our little one.

Hello friends,
Thank you to everyone for your well wishes. I am home from the hospital. Unfortunately, Aaron was deprived of oxygen at birth. We feel fortunate that he was able to be transferred to UM where they have started cooling babies to try to prevent brain injury with some promising results. We have heard of some miraculous recoveries so of course that is what we are praying for. They have started rewarming him today. He remains on the ventilator. It promises to be a very long road with likely setbacks, but we can only pray that the steps forward will outweigh the setbacks. We appreciate any prayers/well wishes you can send up for our little boy.
We are not yet up for visitors but hope to see you all when he is doing better. We will try to send pictures then, he is truly beautiful with dark hair.
With love,
Lauren and Matt

At this point, we felt so bleak about Aaron. Matt and I would ask ourselves what kind of life he could possibly have? How were we going to survive this?

Dear Friends,
We would like to thank you for all the heartfelt messages of support, love, prayers and offers of help. It has truly been a blessing and helped to give us strength.
The best news is that Matt and I held our little boy tonight. He has been off of the ventilator for over 24 hours now and his breathing is strong. Unfortunately, he has had some seizures on the monitors (nothing the doctors or nurses can see, but on an EEG monitor). No one is sure what that means for Aaron but he is being treated for them. The medicine makes him very sleepy, so we are still waiting for him to wake up. There are some very promising signs and we continue to pray for his full recovery. This will be a marathon, but our little boy shows every sign of being a fighter. We will continue to send updates when we are able and our deepest gratitude again for your friendship.
With love,
Lauren and Matt

Oh, holding Aaron for the first time was so wonderful. I can honestly say it was the first time I really thought about bringing him home. Before that, I couldn't even walk into the nursery at home. I was still so scared because he continued to be comatose. His gag and suck reflexes were weak and he was rag-doll floppy.

Our friends and family were amazing. My mom moved in, and my dad was around almost non-stop. My sister came in from DC and to this day, I don't know how I would have survived without them. Friends brought food, gifts for Sam. We were too worried to even see anyone, but our friends persisted in offering support. It was the blessing of this ordeal.

Hello Friends,
Aaron is doing much better. He is a little more awake every day. Today, he has nursed for about 6-7 minutes twice. He is still not digesting too well, probably due to some of his medicines, but we are very encouraged by the nursing. There haven't been seizures. We had a scare on Thursday night when he had a fever, but his cultures have all been negative and his temps are now fine. He still hasn't shown us a good strong cry but he does make lots of little growly noises. We have some cute pictures which I will forward as soon as I can get a chance. He looks just like Matt's baby pics! I am really proud of how he is doing considering all he has been through.
I want to thank you all for all the food, prayers, and well wishes. We feel so grateful for your support and look forward to introducing Aaron when he is stronger.
Love,
Lauren
The nursing was so exciting for me. I was starting to admire this little man, he was such a fighter!

Hi everyone,

Attached are a couple pictures of Aaron. Sorry that it took so long. We have many more that we will email soon, especially since he will be coming home on Monday! He has made a lot of progress over the last few days and feeding has gone very well. Thanks again for all of your love and support. Lauren and I truly have been touched and amazed by how generous and thoughtful each of you have been. We look forward to introducing you to our new son.

Matt and Lauren

This was the last post before we brought Aaron home. I got mastitis and was hospitalized myself for 3 days. The best thing about that was that they let me take Aaron for 24 hours in my hospital room, a good "dry run" for going home. Also, Sam visited us both in the hospital. During the pregnancy, I had looked forward so much to Sam visiting his new baby brother and he wasn't able to see him in the NICU at all. So, we were sort of able to recreate that moment.

Overall, the time in the NICU seems a blur in retrospect. It was bizarre for me to be back in the NICU where I had spent so much time in residency as a parent. I tried desperately to maintain control, and sometimes felt detached from Aaron. The staff treated us wonderfully, and in some ways, I felt I was among friends. But it was so strange being that family, the ones everyone feels sorry for.

Aaron's Birth

2008-08-16T23:09:00.000-05:00

Me, right before Aaron was born....I had no idea what was in store...

I'd like to tell the story of Aaron's entry into the world. I need to start with my pregnancy. I really liked being pregnant. OK, so not every second of it, and I did my share of complaining at the end, but generally I loved the idea of the baby inside of me. My first son was born by CS because he was breech and I never wanted to have a C section. I had been at a lot of them for my job and I just wanted the other experience. However, everything went fine with Sam (baby 1). When I got pregnant with Aaron, I very much wanted to try a VBAC (vaginal birth after C secton). I talked incessantly with my doctors about it, read about it, talked more about it, and we decided to do it. There was a 1/200 risk of uterine rupture, but that included ruptures that were not catastrophic. I was a good candidate due to my having gone into labor naturally with Sam and the spacing between kids. I figured I would be at a great hospital, monitored closely, and at the first sign of any problem, I would be more than happy to abandon the idea and have a CS.

The pregnancy was smooth. Where I had delivered before my due date with Sam, Aaron didn't seem to want to leave the womb. We had scheduled a C section for a few days after my due date. By that time, I was having very frequent contractions and felt I wanted to give my body just a few more days. My doctor and her partner said this was OK, and even said it would be OK to go until after 41 weeks and consider induction. I said no to both and was scheduled for a CS on March 7. We went to the doctor on the 5th and the baby looked great. I told my husband I felt at peace with the C section on the 7th. We made plans to go to the movies on the 6th for one last date before our baby was born. I did take some castor oil on the 5th in the early afternoon, with the doctor's blessing.

We went to bed at 11 pm on the 5th. I was having some Braxton Hicks contractions but nothing unusual. I woke up at midnight and was having more intense contractions. I woke my husband and we called the doctor and my parents. We were laughing and joking and contractions were manageable. I went to get ready to leave. Within a half hour, I was in agony on my bathroom floor with contractions one on top of the other. This was not what we expected. My husband tried to get our son ready to go to the hospital with us. I couldn't move to get dressed. I thought the baby was going to be born at home. Then, the contractions slowed way down. At the time, I thought G-d was giving me a chance to get out the door. Now, I think this is probably when my uterine scar began to tear.

When I got to the hospital, I am told I slumped over in the wheelchair. I remember being in triage and the baby's heartrate was in the 70s. I was bleeding. They checked me and I realized what had happened. My uterus had ruptured and the baby was out in my abdomen. I was taken to a crash C section. I was certain my son had died and that my decision to try for a vaginal delivery had killed him.

I still flash back on my pregnancy and that horrible night fairly frequently. I still feel responsible for what happened to my baby and I think I always will. But on most days, I realize that I can't change the past and I am trying to make it up to him with every day we have together now.
I know that a miserable mother racked with guilt will just hurt him again.