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.
Tuesday, March 24, 2009
Sunday, March 15, 2009
Sisterhood
If you were a little boy...what would you want in an aunt?
She'd have to be lots of fun. Willing to play sports and games with you, act silly, cheer you on at sporting events. She'd be among your biggest fans and delight in you. You'd like her to live really close, but if not, you'd be happy to know she made it as often as she could for special occassions. You'd want her to be there when you were born, and weep with joy when she held you for the first tiime. You'd want her to be adventurous. You'd love her to always bring a little something when she came to visit. You'd like to hear how she rushed to be by your side when your family needed her most. And if she came with a nice, talented, football fan, video-game playing companion, well, all the better :)
My boys have that and more.
If you were a big sister, what would you want in a little sister?
She'd be your first playmate. If you were a little stodgy, she'd have to lighten you up. She'd be just competitive enough to always prod you to be your best. She'd always be in your corner. She would be the one you whispered to late at night, told all your earliest girly secrets too. Let's be honest, you'd want her to be the student to your teacher and let you choreograph the dance and swimming routines...but you'd be ok with switching roles sometimes. She'd have to be lots of fun and make you laugh until you cried. You'd want to protect her, always.
I had that and more.
If you were me, what would sisterhood mean to you?
It means having someone so different from you and so much the same. It means finishing each other's sentences and having some spooky connections. It means being so proud of my little sister- her spirit and smarts, her tolerance and tenacity. She makes me want to be better. Sometimes, it has meant fear...when her adventurous spirit collided with my worrywart ways! (Can I say transitional?) It means always having a sounding board and trusted advisor, a shoulder to cry on. It means unconditional love and support from someone who truly knows me, all my flaws, and loves me anyhow. It means fashion advice! It means everything to me and I can't imagine my life without my beloved sister---Sisters are forever! And yes, forever is way way past 30!
Happy Birthday Andie, we love you so much.
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.
Friday, March 6, 2009
HAPPY 1st BIRTHDAY AARON!
Two years ago, we began seriously thinking of having another child. Another baby to cuddle and nurse, rock and sing to, watch grow. A sibling for Sam, a best friend, sometimes a rival, a playmate, someone to mock us with in our old age! A child born of love and devotion, a fourth member of our family, an individual among a family of strong personalities.
Then, you were with us. Safe in your watery cocoon. We rejoiced. And already, you were different. I felt different. You kicked and squirmed and moved. We predicted that you would be our "wild one". We went for our ultrasound and giggled as you hammed it up for the sonographer, showing only your face. We heard Sam would have a brother and I dreamed up matching outfits, muddy boys, hearty appetites, big bear hugs. We debated names.
One year ago, you were cheated of a safe, smooth entry into this world. But you, my strong boy, fought your way back to us. Firm hands, guided by G-d, restarted your tiny heart and helped you to breathe. You endured more than any baby should have to. Wise doctors sent you into an icy dreamland. Hours old, they wheeled you by me on your way to another hospital. I squinted to see you, longed to touch you, wanted you back inside me where it had been safe. Your dad and I named you Aaron- "Strong mountain" and you were gone. Your daddy, grandparents, aunts, and uncle held vigil at your bedside, and brought me messages of your determination, your adorable head of hair, your beautiful face. They brought pictures, and through it all, I could see for myself. We were so scared, shocked, loved you so much, wanted so badly for you to be healthy.
One year and five days ago, we held you for the first time and I was yours. About two weeks later, you came home. Your family celebrated, your brother cuddled you and we were so grateful.
10 months ago, you smiled and sunshine peeked out through the clouds. Your smile could melt glaciers! 8 months ago, you laughed, and it was music. We stretched and sang, worried and wept. Let me tell you---you could cry with the best of them! You rolled toward your brother and he began to be your devoted coach. You scoffed at sleep and nourishment, what superbaby needs such things!?
6 months ago, you sat up. I exhaled. Soon after, you CRAWLED. Of course you did, and as predicted, you are our wild one. Wonderfully stubborn and strong-willed and sassy! Temper tantrums way before 2! But also, so sweet, my snuggle bug and your daddy's pride and joy. You and your brother motored around the house and I could hardly believe my eyes.
1 month ago, you walked. For me, it was like watching the moonwalk, no, better. I dream again, and I am sorry I ever underestimated you. I won't do it again, dear son.
Today, you called me mama. You played on the playground with your aunt and your brother. You ate and actually enjoyed your birthday dinner (chicken strips, fries, peas and egg-free, dairy-free chocolate cupcakes :)) You made a big mess. You tumbled head-first down your new slide, fearless. You "read" constantly and so intently.
Today, we celebrate your life. I cannot imagine life without you. You are so special, so unique, our little Cinderella man, your brother's cha-cha, your Bubbie's superstar, little Saba hair...so today, for our Aaron Jacob- with thanks to Sarah McLachlan- the song that always makes me think of you...my not so ordinary miracle
It’s not that unusual when everything is beautiful
It’s just another ordinary miracle today
The sky knows when its time to snow
You don’t need to teach a seed to grow
It’s just another ordinary miracle today
Life is like a gift they say
Wrapped up for you everyday
Open up and find a way
To give some of your own
Isn’t it remarkable? ....
Please don’t throw your dreams away
Hold them close to your heart
Cause we are all a part Of the ordinary miracle today
Wednesday, March 4, 2009
Changes
Well, Aaron's 1st year is fast coming to a close and it is time to change the title of this blog. A big thank you to my BFF Retrogirl for showing me how to change my focus, both in the blogosphere and in real life. I have struggled with the title (and the focus) a lot this year. This was certainly a year that was, in many ways, centered around Aaron---but there is definitely another center of attention in my life! Both in the blog and in real life, it has been a struggle to not lose sight of our big boy's needs in light of his brother's challenges this year. Also, as Aaron continues to grow and thrive, he is and will be so much more than his heart-wrenching entry into the world. My hope is that the difficulties of his early days will slowly fade with the glories of all his upcoming "firsts". Every inspirational story you read about kids overcoming challenges seems to bear a common theme: My parents treated me no differently. So, in that spirit, this blog is now officially about BOTH my busy, brilliant, bossy, beautiful boys.
Friday, February 27, 2009
10 Honest Things about Myself
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!
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!
Monday, February 16, 2009
Fathers
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!
Friday, February 13, 2009
Cooling cap update and fun video
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...
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...
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