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!
Friday, February 27, 2009
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...
Tuesday, February 10, 2009
Another appointment...
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!
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!
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