Our up and down ride continues, this time with a bit of an uptick compared to last night's post. Bekka's bleeding has slowed dramatically. Unlike the last episode while were still at WakeMed Cary, last nights bleeding was only heavy for maybe an hour and a half. Overnight, there really was only heavy spotting and that continues today. It's not ideal for bleeding to be occurring at all, but this is certainly better.
Both babies did well overnight. As predicted, the "all night" monitoring did not occur because the little monkeys were simply moving around too much. Instead, they have done a couple of 1/2 hour monitoring sessions. Heartbeats look good and so does Bekka's lack of contractions.
Bekka received the second (of two) steroid injections around noon and then this afternoon, they conducted a detailed ultrasound in preparation for a meeting with the chief fetal-maternal medicine specialist here at the hospital. We hope he can put the whole situation together for us. We've had a parade of attending and resident physicians through the room and they've all been great and we certainly feel like someone is looking out for both Bekka and the little ones.
In much more mundane news - they found a sleeper chair for me. A recliner with wood-topped arms does not a comfy bed make. I'm shooting for more than 4 hours of sleep this evening ;)
Monday, April 19, 2010
Sunday, April 18, 2010
Evening Update - 4-18-2010
Bekka began bleeding again this evening. It is lighter than last night but any bleeding is concerning. We just saw one of the doctors, and based on the evidence she decided to do a speculum exam and quick ultrasound. The good news is that the cerclage is holding and does not appear to be under stress.
Based on this and the ultrasound evidence, it looks like there might be a small tear in the little girl's placenta (abruption). This can be caused when the uterus contracts around the baby (say, due to amniotic fluid loss after a rupture) and the placenta tears away from the wall of the uterus. Bekka is not in any pain and is not having contractions which is a good sign that it's a small tear (if that's what it is). They have put both babies on the heart rate monitors full time..well, trying to as they are awfully small for that and tend to move around too much! Bekka is back on full time toco monitoring looking for contractions.
Abruptions can be dangerous to both mother and baby, but the smaller they are the better. Yes, it's more drama in an already dramatic situation but knowing is always better. They will be looking for any signs of rapidly dropping heart rates for little girl and excessive bleeding for Bekka. Either one could trigger an emergency c-section. Let's hope not for a while yet!
Based on this and the ultrasound evidence, it looks like there might be a small tear in the little girl's placenta (abruption). This can be caused when the uterus contracts around the baby (say, due to amniotic fluid loss after a rupture) and the placenta tears away from the wall of the uterus. Bekka is not in any pain and is not having contractions which is a good sign that it's a small tear (if that's what it is). They have put both babies on the heart rate monitors full time..well, trying to as they are awfully small for that and tend to move around too much! Bekka is back on full time toco monitoring looking for contractions.
Abruptions can be dangerous to both mother and baby, but the smaller they are the better. Yes, it's more drama in an already dramatic situation but knowing is always better. They will be looking for any signs of rapidly dropping heart rates for little girl and excessive bleeding for Bekka. Either one could trigger an emergency c-section. Let's hope not for a while yet!
At WakeMed Raleigh - 4-18-2010 Update
Good news: We are at WakeMed
Bad news: We now have a better idea of the type of situation we are in. It's pretty scary.
Having met with the attending and resident physicians we know it's pretty remarkable we are here based on what's happened the last week and a half. We are going to have a tough road ahead. They are stopping all antibiotics once the treatment course is done (to avoid creating super bugs in Bekka) and ceasing all tocolytics (anti-contraction meds). Apparently, Bekka has already had more courses of more types of tocolytics than is normal. They may give her another round if she begins having contractions so they can give her two steroid shots. The steroids are absolutely critical for lung development in preterm babies and are most effective if delivery is delayed at least 48 hours after the first shot. This would mean trying to wait until at least 12:35 on Tuesday (4/20) to deliver.
Ideally, Bekka just hangs on and doesn't deliver for a while AND there are no infections. That's the big if right now. Theoretically, they could delay labor indefinitely, but because she experienced a ruptured membrane (PPROM), infection is a great risk to both mother and babies. Sepsis is a very real concern so doctors have to maintain a balance between keeping the babies in utero and avoiding infection.
So now we wait some more and pray some more. It seems very unlikely based on all the new information that we will be able to hold off delivery until 30 weeks. Even if Bekka does not go into labor, it's likely we will not be able to wait due to the infection risk.
It wasn't supposed to be this hard. Not after what we went through with Ollie. Unfortunately, chance is a cruel foe.
Bad news: We now have a better idea of the type of situation we are in. It's pretty scary.
Having met with the attending and resident physicians we know it's pretty remarkable we are here based on what's happened the last week and a half. We are going to have a tough road ahead. They are stopping all antibiotics once the treatment course is done (to avoid creating super bugs in Bekka) and ceasing all tocolytics (anti-contraction meds). Apparently, Bekka has already had more courses of more types of tocolytics than is normal. They may give her another round if she begins having contractions so they can give her two steroid shots. The steroids are absolutely critical for lung development in preterm babies and are most effective if delivery is delayed at least 48 hours after the first shot. This would mean trying to wait until at least 12:35 on Tuesday (4/20) to deliver.
Ideally, Bekka just hangs on and doesn't deliver for a while AND there are no infections. That's the big if right now. Theoretically, they could delay labor indefinitely, but because she experienced a ruptured membrane (PPROM), infection is a great risk to both mother and babies. Sepsis is a very real concern so doctors have to maintain a balance between keeping the babies in utero and avoiding infection.
So now we wait some more and pray some more. It seems very unlikely based on all the new information that we will be able to hold off delivery until 30 weeks. Even if Bekka does not go into labor, it's likely we will not be able to wait due to the infection risk.
It wasn't supposed to be this hard. Not after what we went through with Ollie. Unfortunately, chance is a cruel foe.
Friday, April 16, 2010
Afternoon Bekka Update 4-16
Bekka is doing better now. The bleeding is pretty much stopped, they took her off magnesium sulfate, and she spilled soup on herself. Ok, so the last isn't good, but she's fine and now the room smells like chicken broth - could be worse.
They have placed her on a different tocolytic with fewer side effects. Hopefully one drug is enough and she doesn't have to be on two or go back on the mag (which makes her feel positively awful).
One of the docs came by today and did an ultrasound. It looks like there is a bit more fluid around the little girl (hard to say for sure as it was not the nicer ultrasound used by the techs). Compared to last Sunday, it really appeared to these amateur eyes to be a better situation. As usual, the little boy is just swimming around like nothing is wrong.
Based on the current situation, there are plans to move us to the main WakeMed hospital on Sunday, pending availability of NICU beds. They will likely give a two day course of steroids beginning Sunday morning to spur lung development.
Keep the prayers, thoughts and vibes coming and I'll keep the updates flowing. I really hope there isn't much of a need.
They have placed her on a different tocolytic with fewer side effects. Hopefully one drug is enough and she doesn't have to be on two or go back on the mag (which makes her feel positively awful).
One of the docs came by today and did an ultrasound. It looks like there is a bit more fluid around the little girl (hard to say for sure as it was not the nicer ultrasound used by the techs). Compared to last Sunday, it really appeared to these amateur eyes to be a better situation. As usual, the little boy is just swimming around like nothing is wrong.
Based on the current situation, there are plans to move us to the main WakeMed hospital on Sunday, pending availability of NICU beds. They will likely give a two day course of steroids beginning Sunday morning to spur lung development.
Keep the prayers, thoughts and vibes coming and I'll keep the updates flowing. I really hope there isn't much of a need.
Not a No News Morning
Today, the news is not so positive.
Bekka had a run of light to moderate contractions overnight. It was significant enough that they put her back on an IV drip of magnesium sulfate to stop them. That is a misery inducing medication they had her on the first couple of days. Unfortunately, this was also accompanied by bleeding/leakage. This has slowed greatly, but we don't know why it occurred or if it's significant. Bekka has specifically asked that I stay with her today (before I had a chance to ask her if I should - that tells me she is not feeling well).
I will post later if we learn anything or the situation changes.
Bekka had a run of light to moderate contractions overnight. It was significant enough that they put her back on an IV drip of magnesium sulfate to stop them. That is a misery inducing medication they had her on the first couple of days. Unfortunately, this was also accompanied by bleeding/leakage. This has slowed greatly, but we don't know why it occurred or if it's significant. Bekka has specifically asked that I stay with her today (before I had a chance to ask her if I should - that tells me she is not feeling well).
I will post later if we learn anything or the situation changes.
Thursday, April 15, 2010
No News Really is Good News
I'm happy to say I have nothing to report this morning. Bekka was having another nausea and heartburn bout when I left, but everything else looked great. The nurse was able to get good heartbeats right off the bat. As far as I know, we are still on schedule to go to WakeMed early next week. I probably won't make another post until that happens or we have any significant updates from the doctors.
Right now, boring is a very good thing.
UPDATE: I've had a few questions about whether we've had another ultrasound to look at the fluid levels. The answer is no. The doctor has indicated they will probably do one after transfer to WakeMed, but there isn't anything they can do medically right now based on the information. Yes, we'd like to know as much as everyone else but it looks like we'll have to wait a few days!
Right now, boring is a very good thing.
UPDATE: I've had a few questions about whether we've had another ultrasound to look at the fluid levels. The answer is no. The doctor has indicated they will probably do one after transfer to WakeMed, but there isn't anything they can do medically right now based on the information. Yes, we'd like to know as much as everyone else but it looks like we'll have to wait a few days!
Tuesday, April 13, 2010
Day 5 in the Hospital
Bekka did pretty well today. Her potassium was a bit low so they put her on IV supplements. She also had a bout with nausea. This could be caused by any number of drugs or could just be pregnancy related. Poor thing was sick right up until Ollie was delivered and has had definite problems this time around, though not as severe.
The babies still have good heartbeats and Bekka indicates they are moving around a lot. No ultrasound today, so we do not have any news on the amniotic fluid levels.
Overall, this is a "no news is good news" day. Now we need about 10 more weeks of these...
We were also told that if everything continues apace, we should be able to get transferred to the main WakeMed campus Sunday or Monday of next week.
The babies still have good heartbeats and Bekka indicates they are moving around a lot. No ultrasound today, so we do not have any news on the amniotic fluid levels.
Overall, this is a "no news is good news" day. Now we need about 10 more weeks of these...
We were also told that if everything continues apace, we should be able to get transferred to the main WakeMed campus Sunday or Monday of next week.
Twins, Hospitals and Amniotic Sacs
A business trip took me away from home last Tuesday (4/6). I was a little worried about leaving 5 month pregnant Bekka and the little guys in her belly alone for 3 days, but everything looked great! She'd had a 20 week ultrasound that indicated the babies were healthy and growing and generally just frolicking away their time in the womb. On 4/5, she'd been to the OB and everything was looking solid. So I went to Dallas without much worry at all.
The workshop was very productive and enjoyable, but on the way back, things began to get complicated. Storms in Atlanta (how I hate that airport) were backing up all flights and my flight out of DFW didn't leave for 2 hours and only after 3 gate changes. The only good news was that my flight to Raleigh was equally delayed because the same crew was flying us home. After 3 more gate changes, we finally boarded. I'd turned my phone off around 12:30am (this would be early Friday morning at this point) as we were preparing to pull away when it suddenly rang (HOW?). It was Dave trying to reach me. I thought he might just be razzing me for being so late, but after 3 tries to connect, we finally did and Bekka was immediately on the phone.
Dave was at my house.
Bekka sounded calm but scared.
This isn't good.
And it wasn't.
While going to the bathroom that night, Bekka noticed an unusual amount of blood. All women get a bit of spotting here and there during pregnancy but this was more than that. Further, there was something protruding that "felt and looked like a bouncy ball." She knew immediately it was her amniotic sac and went to lie down. She called the OB, EMS and Dave. Because our OB works out of Cary, Bekka had the EMS take her to WakeMed Cary.
While waiting for the EMS to arrive, she had Dave call me. So I'm stuck in a tin can at the crappiest airport in America, my wife might be losing her pregnancy and I know it's going to be 2 or 3 hours before I can see her.
I do not recommend this.
I finally made it to the hospital at about 3:30am. Bekka was resting (somewhat) comfortably with her feet higher than her head. I now know this is the Trendelenberg Position. At this point, it did not appear that the amniotic sac had ruptured, but it was still protruding from the cervix when she was examined. This was in a effort to get the amniotic sac to withdraw on it's own back into the uterus.
Thus began our up and down saga of the last few days.
Much of this has been posted on Facebook and via email, so some of you know what is going on, but suffice it to say that a risky but non-optional emergency cerclage was required on Sunday morning, as she was about 7cm dilated. The operation involved using a balloon catheter to push the amniotic sac back into the cervix and slowly, incrementally stitching it closed. Bekka has slowly improved over the last day and a half after experiencing pulmonary edema after surgery. Leakage of fluid also seems to have slowed greatly.
The little girl lost a lot of fluid from her amniotic sac (it is guessed through a leak high on the amniotic sac as the doctor could not see an obvious rupture). The little boy's amniotic sac appears to be intact and full. Both of them have maintained strong heartbeats and we hope that the little girl's sac will heal and refill as amniotic fluid is critical for lung development in tiny babies.
Right now the biggest risks are the onset of premature labor (Bekka is receiving meds to slow/prevent this) and infection. With a ruptured sac and the protrusion into the outside world, contamination is a great danger and any infection can spread from baby to baby and to the mother. She is on two types of antibiotics to fight the infection danger.
24 weeks of gestation is considered the cutoff for preterm survival with a reasonable chance of avoiding brain damage and major physical handicaps. The babies will be 23 weeks tomorrow (4/13). We will be trying to get transferred to a hospital with a full Level 3/Level 4 NICU at the end of this week. Such a facility offers the best chance of healthy survival in case she delivers. In this area, that is WakeMed (main hospital), Duke and UNC. Obviously, the best case is that everyone does fantastically well and we can get way beyond 24 weeks. Full term delivery is very very unlikely, but getting anywhere near 30 greatly increases survival chances and infant health.
So:
Emergency Cerclage
Low fluid level in the little girl's sac
Normal fluid level in the boy's amniotic sac
Currently stable and holding
High risk of infection
High risk of early labor
Thank you all for the prayers and love that have come our way. We never imagined we'd have to call on our community of family and friends so soon and certainly did not want it to be in this way.
Stay tuned here for postings as things progress. We are not in a good place, but given the situation, it's as good as it could be.
The workshop was very productive and enjoyable, but on the way back, things began to get complicated. Storms in Atlanta (how I hate that airport) were backing up all flights and my flight out of DFW didn't leave for 2 hours and only after 3 gate changes. The only good news was that my flight to Raleigh was equally delayed because the same crew was flying us home. After 3 more gate changes, we finally boarded. I'd turned my phone off around 12:30am (this would be early Friday morning at this point) as we were preparing to pull away when it suddenly rang (HOW?). It was Dave trying to reach me. I thought he might just be razzing me for being so late, but after 3 tries to connect, we finally did and Bekka was immediately on the phone.
Dave was at my house.
Bekka sounded calm but scared.
This isn't good.
And it wasn't.
While going to the bathroom that night, Bekka noticed an unusual amount of blood. All women get a bit of spotting here and there during pregnancy but this was more than that. Further, there was something protruding that "felt and looked like a bouncy ball." She knew immediately it was her amniotic sac and went to lie down. She called the OB, EMS and Dave. Because our OB works out of Cary, Bekka had the EMS take her to WakeMed Cary.
While waiting for the EMS to arrive, she had Dave call me. So I'm stuck in a tin can at the crappiest airport in America, my wife might be losing her pregnancy and I know it's going to be 2 or 3 hours before I can see her.
I do not recommend this.
I finally made it to the hospital at about 3:30am. Bekka was resting (somewhat) comfortably with her feet higher than her head. I now know this is the Trendelenberg Position. At this point, it did not appear that the amniotic sac had ruptured, but it was still protruding from the cervix when she was examined. This was in a effort to get the amniotic sac to withdraw on it's own back into the uterus.
Thus began our up and down saga of the last few days.
Much of this has been posted on Facebook and via email, so some of you know what is going on, but suffice it to say that a risky but non-optional emergency cerclage was required on Sunday morning, as she was about 7cm dilated. The operation involved using a balloon catheter to push the amniotic sac back into the cervix and slowly, incrementally stitching it closed. Bekka has slowly improved over the last day and a half after experiencing pulmonary edema after surgery. Leakage of fluid also seems to have slowed greatly.
The little girl lost a lot of fluid from her amniotic sac (it is guessed through a leak high on the amniotic sac as the doctor could not see an obvious rupture). The little boy's amniotic sac appears to be intact and full. Both of them have maintained strong heartbeats and we hope that the little girl's sac will heal and refill as amniotic fluid is critical for lung development in tiny babies.
Right now the biggest risks are the onset of premature labor (Bekka is receiving meds to slow/prevent this) and infection. With a ruptured sac and the protrusion into the outside world, contamination is a great danger and any infection can spread from baby to baby and to the mother. She is on two types of antibiotics to fight the infection danger.
24 weeks of gestation is considered the cutoff for preterm survival with a reasonable chance of avoiding brain damage and major physical handicaps. The babies will be 23 weeks tomorrow (4/13). We will be trying to get transferred to a hospital with a full Level 3/Level 4 NICU at the end of this week. Such a facility offers the best chance of healthy survival in case she delivers. In this area, that is WakeMed (main hospital), Duke and UNC. Obviously, the best case is that everyone does fantastically well and we can get way beyond 24 weeks. Full term delivery is very very unlikely, but getting anywhere near 30 greatly increases survival chances and infant health.
So:
Emergency Cerclage
Low fluid level in the little girl's sac
Normal fluid level in the boy's amniotic sac
Currently stable and holding
High risk of infection
High risk of early labor
Thank you all for the prayers and love that have come our way. We never imagined we'd have to call on our community of family and friends so soon and certainly did not want it to be in this way.
Stay tuned here for postings as things progress. We are not in a good place, but given the situation, it's as good as it could be.
Monday, April 12, 2010
Good News and Scary News
It's been over 2 months since we have posted on Ollie's blog. We didn't intend for it to be that long, but life has been busy and we have been busy.
Boy howdy.
We are trying to make Ollie a big brother.
Some of you may have found out through Facebook or email or from friends and family but I know many did not. We'd always intended to use this wonderful place as a way to keep communicating with all the wonderful people that followed and prayed and helped that insane year of our lives. For one reason or another (mostly nervousness, I think), we never quite got the information up.
Before he passed away, we'd already begun discussing having more children (we'd hoped Ollie would get to see them, but knew that was sadly unikely). Last fall we begin meeting with the doctor's at Carolina Conceptions about conceiving children, hopefully unaffected by SMA. In the end, we decided to pursue In Vitro Fertilization (IVF) with Pre-implantation Genetic Diagnosis (PGD).
As fate would will it, we wound up with two embryos that were indicated as unaffected and those were transferred to Bekka in November. Both implanted and she became pregnant with twins: A boy and a girl. We were overjoyed (ecstatic even!). Being cautious types nowadays, we decided to keep news of this quiet until we were sure all was progressing well. An amniocentesis performed at the end of February confirmed that the babies were SMA carriers but otherwise unaffected.
That's the good (no, GREAT) news.
Now for the Scary News.
We'll be making regular blog updates for awhile because Bekka's in the hospital. Babies aren't supposed to arrive at 22 weeks but these little guys tried and we are trying to stop them mightily. I'll sum up what has occurred so far in the next post. If you have been following on Facebook, this will be the place to go (but I'm cross-posting so you should just be able to click over).
Boy howdy.
We are trying to make Ollie a big brother.
Some of you may have found out through Facebook or email or from friends and family but I know many did not. We'd always intended to use this wonderful place as a way to keep communicating with all the wonderful people that followed and prayed and helped that insane year of our lives. For one reason or another (mostly nervousness, I think), we never quite got the information up.
Before he passed away, we'd already begun discussing having more children (we'd hoped Ollie would get to see them, but knew that was sadly unikely). Last fall we begin meeting with the doctor's at Carolina Conceptions about conceiving children, hopefully unaffected by SMA. In the end, we decided to pursue In Vitro Fertilization (IVF) with Pre-implantation Genetic Diagnosis (PGD).
As fate would will it, we wound up with two embryos that were indicated as unaffected and those were transferred to Bekka in November. Both implanted and she became pregnant with twins: A boy and a girl. We were overjoyed (ecstatic even!). Being cautious types nowadays, we decided to keep news of this quiet until we were sure all was progressing well. An amniocentesis performed at the end of February confirmed that the babies were SMA carriers but otherwise unaffected.
That's the good (no, GREAT) news.
Now for the Scary News.
We'll be making regular blog updates for awhile because Bekka's in the hospital. Babies aren't supposed to arrive at 22 weeks but these little guys tried and we are trying to stop them mightily. I'll sum up what has occurred so far in the next post. If you have been following on Facebook, this will be the place to go (but I'm cross-posting so you should just be able to click over).
Wednesday, February 3, 2010
Remembrances of Ollie
Today is six months.
That does not seem possible.
Each day, Bekka and I are learning to live life without our little guy and both of us are emotionally at a better place than even a month ago. They say that time is the great healer - and that is true. It doesn't mean we don't spontaneously break down in tears sometimes or that we don't have days where it's hard to simply get going in the morning, but it's better.
Last year around this time things started getting rougher for the three of us. I read that post now and it's amazing how naive yet prescient it seems. I barely remember Ollie having such a rough go of it that early. I think this is mostly because it was so very bad later on. In February of last year, I only had an academic idea of what we were in for. Two months later we'd have our first trip to the hospital. 4 months after that, Ollie would be gone.
We miss him terribly, but we surely do not miss the damn disease.
--
I want to once again thank all of the wonderful people that helped us through our year of joy and pain. We could not have cared for our little boy and kept our sanity and our hearts intact without the love and assistance from so many. Ollie's life provides the world such a great example of an "us" society rather than a "me" society. It's so important to remember that we are all on this ship together.
You know who you are and you are all beautiful people.
That does not seem possible.
Each day, Bekka and I are learning to live life without our little guy and both of us are emotionally at a better place than even a month ago. They say that time is the great healer - and that is true. It doesn't mean we don't spontaneously break down in tears sometimes or that we don't have days where it's hard to simply get going in the morning, but it's better.
Last year around this time things started getting rougher for the three of us. I read that post now and it's amazing how naive yet prescient it seems. I barely remember Ollie having such a rough go of it that early. I think this is mostly because it was so very bad later on. In February of last year, I only had an academic idea of what we were in for. Two months later we'd have our first trip to the hospital. 4 months after that, Ollie would be gone.
We miss him terribly, but we surely do not miss the damn disease.
--
I want to once again thank all of the wonderful people that helped us through our year of joy and pain. We could not have cared for our little boy and kept our sanity and our hearts intact without the love and assistance from so many. Ollie's life provides the world such a great example of an "us" society rather than a "me" society. It's so important to remember that we are all on this ship together.
You know who you are and you are all beautiful people.
Thursday, January 14, 2010
Ollie and the Holidays
More than a few times over the holiday season, someone said to one of us “Christmas must be really hard” or “Thanksgiving must have been tough”. I suppose in some respects that’s true.
Yet somehow, the whole experience was gently uplifting
Yes, we looked at pictures and cried. Yes, we watched as kids were passed around or tore into their shiny-wrapped boxes. And yes, it hurt (a little). At the same time, it made us so happy to see other's joy and to absorb just a bit of that. Christmas and kids go together like the proverbial peanut butter and chocolate, and that’s a good thing.
Still, Bekka and I asked ourselves many times: “How did we survive this so well?”
It wasn’t all roses, but there were more flowers than weeds. We didn’t decorate this year - in fact we didn’t even get each other gifts. What we did do was see friends and tell stories and laugh a lot. We saw family, and we laughed with them too. OK, so we cried some in there, but it was never melancholy. Sad at times, yes, but never melancholy.
The answer, I think, lies in Ollie himself and the way we chose to celebrate his time with us each and every day. One of Ollie’s nurses commented that she’d never seen a family stay so positive yet so realistic. It wasn’t easy, but we felt it was something we had to do for him and for ourselves. We knew there was an endgame. We knew that it was coming sooner rather than later – but that it wasn’t a reason not to enjoy every little moment of this precious life we had been given. The results were many beautiful little memories tucked away – memories that taken together far outweigh the big bad ones. Ollie almost made it too easy. He smiled that big toothless grin and used those great big blue eyes to draw you into his angelic little world.
We look back and marvel we were able to observe every major holiday with Ollie. Thanksgiving, Christmas, New Years, Easter, Mother’s Day, Father’s Day (don’t think those weren’t special!) So many good memories for so many holidays. Remembering those times when our little guy was there to snuggle with – that’s what helped us get through what could have been a terrifying time.
I won't lie - we miss you terribly little man, but your time here was so special to so many. We’ll always have a Jolly Ollie Christmas in your honor.
Yet somehow, the whole experience was gently uplifting
Yes, we looked at pictures and cried. Yes, we watched as kids were passed around or tore into their shiny-wrapped boxes. And yes, it hurt (a little). At the same time, it made us so happy to see other's joy and to absorb just a bit of that. Christmas and kids go together like the proverbial peanut butter and chocolate, and that’s a good thing.
Still, Bekka and I asked ourselves many times: “How did we survive this so well?”
It wasn’t all roses, but there were more flowers than weeds. We didn’t decorate this year - in fact we didn’t even get each other gifts. What we did do was see friends and tell stories and laugh a lot. We saw family, and we laughed with them too. OK, so we cried some in there, but it was never melancholy. Sad at times, yes, but never melancholy.
The answer, I think, lies in Ollie himself and the way we chose to celebrate his time with us each and every day. One of Ollie’s nurses commented that she’d never seen a family stay so positive yet so realistic. It wasn’t easy, but we felt it was something we had to do for him and for ourselves. We knew there was an endgame. We knew that it was coming sooner rather than later – but that it wasn’t a reason not to enjoy every little moment of this precious life we had been given. The results were many beautiful little memories tucked away – memories that taken together far outweigh the big bad ones. Ollie almost made it too easy. He smiled that big toothless grin and used those great big blue eyes to draw you into his angelic little world.
We look back and marvel we were able to observe every major holiday with Ollie. Thanksgiving, Christmas, New Years, Easter, Mother’s Day, Father’s Day (don’t think those weren’t special!) So many good memories for so many holidays. Remembering those times when our little guy was there to snuggle with – that’s what helped us get through what could have been a terrifying time.
I won't lie - we miss you terribly little man, but your time here was so special to so many. We’ll always have a Jolly Ollie Christmas in your honor.
Wednesday, January 13, 2010
One Million Dollars for SMA Awareness and Research?
Yes, you read that correctly. One MILLION dollars.
But only if you help.
The Gwendolyn Strong Foundation (GSF) has already won $25,000 in the Chase Community Giving campaign on Facebook. (That's Chase as in the big bank and credit card company.) And, just as they pledged to do, they donated all $25,000 to SMA research at the University of California-Irvine, California Stem Cell, Inc., and Dr. Hans Keirstead. (Check out this news release from Families of SMA for more info on the research.)
How did GSF win $25,000? The same way they'll win $1,000,000...with your help!
Facebook users became fans of the Chase Community Giving campaign. Then they voted for GSF. And asked their friends to vote as well. Simple, really. GSF was one of the top 100 charities.
Voting for round two begins Friday, January 15th and ends Friday, January 22nd.
Will you help? Please!
Will you ask your friends to help? (Get some great ideas from the Strong family here.)
One million dollars would dramatically change SMA.
But only if you help.
The Gwendolyn Strong Foundation (GSF) has already won $25,000 in the Chase Community Giving campaign on Facebook. (That's Chase as in the big bank and credit card company.) And, just as they pledged to do, they donated all $25,000 to SMA research at the University of California-Irvine, California Stem Cell, Inc., and Dr. Hans Keirstead. (Check out this news release from Families of SMA for more info on the research.)
How did GSF win $25,000? The same way they'll win $1,000,000...with your help!
Facebook users became fans of the Chase Community Giving campaign. Then they voted for GSF. And asked their friends to vote as well. Simple, really. GSF was one of the top 100 charities.
Voting for round two begins Friday, January 15th and ends Friday, January 22nd.
Will you help? Please!
Will you ask your friends to help? (Get some great ideas from the Strong family here.)
One million dollars would dramatically change SMA.
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