In the last year I have been volunteering my time to speak with parents who are going through similar NICU stays. Parents of gravely ill babies born way too early. It has been rewarding and even sometimes really hard.
More than six years after the premature birth of my boys, my very healthy and happy children, I can still be pulled back into the nightmare, the horror that is prematurity.
The families that I have worked with were wonderful. They've all had that perfect mix of fight and fright. Never too optimistic, never too down. You have to be that way with the prospect of a prolonged NICU stay. It has been a great experience, and I really enjoy working with them, but they are essentially strangers, it is easier somehow.
In the last 30+ days I have been too close to prematurity again.
34 days ago, a friend, a former NICU friend, gave birth to her son, prematurely. In a country that admits to being 15 years behind the US in their neonatal medicine. At 26 weeks. I know 26 weeks so intimately. Her son, was only 1 pound 7 ounces. Even more Micro than my Micros He has already had a brain bleed and NEC, however on the positive side, he is sprinting, and his lungs seem to be doing so much better than my 26 weekers. Everyday she posts an update on Facebook. Everyday I hold my breath as I read it. I know so well how quickly something can change. NEC -- That scares me so much. We escaped its wrath, but each time I read that they are increasing his feeds, or that his belly is a little distended, I cringe. She is so positive, and strong, and guardedly optimistic. In the first few days I would scream at the computer at all of her other friends congratulations, and positivity. Only someone who has been through all the ups and downs can know how painful congratulations can be.
Just last week another preemie was born to a friend of the family. 27/6. Preeclampsia. It all comes back so strongly. Every up and down. Every milestone. First skin to skin. First feed. This boy is doing really well. So far no major issues. I am holding my breath, can you tell?
As much as I want to know what is happening with these babies, it is hard. I am trying to follow "casually". Maybe it is a protective wall. I worry about these friends. Every day. My heart aches for them. Every day. Their babies get stronger. Every day.
and maybe I do too.
Showing posts with label Preemies. Show all posts
Showing posts with label Preemies. Show all posts
Wednesday, September 26, 2012
Friday, May 21, 2010
Just a small task
We had our 4 year check ups this week. I cannot believe they are four. Honestly, where does the time go?
In this appointment, our pediatrician went over the typical checklist.
How are the breathing? Fine
How are the eating? Fine
How are the hearing? Fine
How are the kidney's? Soon to be fine
How are the eyes? Fine
How are they doing in school? Fine
How are they sleeping? Fine
And then it hit him...he looked up at me and smiled.
Wow, he said. You realize, I'm writing in their charts that for the most part all of the issues we can attribute to their prematurity are resolved. The only lasting issue will be their eyesight...hmmm, he mused. That's great, just great, he smiled.
and then he had to go and add,
So, you realize that now, the only thing you have to worry about is keeping them safe.
I'm still laughing.
In this appointment, our pediatrician went over the typical checklist.
How are the breathing? Fine
How are the eating? Fine
How are the hearing? Fine
How are the kidney's? Soon to be fine
How are the eyes? Fine
How are they doing in school? Fine
How are they sleeping? Fine
And then it hit him...he looked up at me and smiled.
Wow, he said. You realize, I'm writing in their charts that for the most part all of the issues we can attribute to their prematurity are resolved. The only lasting issue will be their eyesight...hmmm, he mused. That's great, just great, he smiled.
and then he had to go and add,
So, you realize that now, the only thing you have to worry about is keeping them safe.
I'm still laughing.
Thursday, November 19, 2009
It all just boils to the surface.
I had a post planned for today with some of the stories that the boys and I have been creating, but last night I had a brief "conversation" with my friend Lindsay, and it got me thinking. (and thinking and thinking)
She has a friend who is 27 weeks pregnant with twin girls. Her friend is in the hospital, on the dreaded Magnesium Sulfate. Trying to keep those babies cooking, as long as possible.
It was shocking to us that we were so naive about pregnancy. We are both well educated women, who um, well, lets just say, "do our research." How could we not know, or maybe understand the epidemic of premature birth.
Maybe it is a blessing that we, as total worriers did not know, all that stress might have brought our kids even earlier!
Women give birth to term babies all the time. That is the norm, that is what we hear about. I knew I would not carry these babies to term. I have a small frame, small hips, just not a lot of room there to hold two babies. But did I ever think 26 weeks? That is just unheard of. 26 weeks. Think about that. More than three months early. Three months! Just into the third trimester. WHOA. How could I not know that this was even a possibility? I thought early, 36 weeks, 34 maybe.
One in EIGHT babies is born too soon. Look at 8 friends, at least one of them, statistically at least, should be touched by prematurity. That's the same number as women touched by breast cancer.
These are not all babies born addicted to drugs, or to teen moms, or mothers who did not have prenatal care. They are women like my friends, Lindsay, Jen, Nina, Saffron, Keri, Donna, Karissa, Educated Women who took care of themselves and their babies. Women who had no idea they would be a statistic of premature birth.
They had no idea that some doctor would come in and tell them that their child or children would not make it through the night, and if they did it would be a miracle. They had no idea that people would shake their heads every day that their children survived, and fought just to breathe. They had no idea that they would have to SIT and stare that their babies for days, weeks, before they could touch or hold their babies in their arms. They had no idea the kind of agony that would cause. How they would look around the NICU and see other moms or dads holding their babies, and they would fight back the tears as they wondered if their day would ever come.
Those parents would have no idea what an IVH, or a Oscillating Ventilator, or a High Frequency Ventilator, or a PICC line, or an umbilical line, or NEC, or a PDA, or a VCUG, or ROP or any of the many medical terms and procedures and equipment and all the things that could go wrong were. They would have no idea that they would spend endless hours at the beside of their barely alive child and then spend endless hours at home reading and researching all of the things they heard at the hospital that day.
Those parents would experience THAT moment. EVERYDAY. As they signed into the NICU and washed their hands. Searching the faces of the staff, for signs, was it a good day, was it a bad day, has anything changed, is my baby still alive? EVERYDAY. Intellectually you know they will call you if there is a problem and you need to get to the hospital quickly, because you've experienced THAT call already. But what if, in the time it took you to walk through that dead zone down that hallway in the hospital, they couldn't reach you. EVERYDAY.
Those parents, three plus years later, know that this experience will never fully leave them. There will still be days that while sitting in a park surrounded by moms and kids listening to a guy with a guitar sing "You Are My Sunshine" will bring a mom to tears, uncontrollable tears. There will still be days that hearing someone say they are 26 weeks pregnant and feel safe now will not make them want to shout, "YOU FOOL, you are NOT safe, you are a LONG, LONG way from safe". There will still be days that upon hearing that a friend of a friend is in the hospital at 27 weeks, their heart will not sink, and their eyes will not well up.
Those people, they, WE. We had no idea. Now we do and it still sucks. No one should ever have to go through that living hell. No child should ever go through half of the pain and suffering our children have been through in their young lives. No parent should have to look at her boys heels and see the scars from the constant blood draws, daily, twice daily, every three hours. No parent should have to see the scars on their child's back or chest, or belly from some procedure done before they were even supposed to be born. No parent should have to deal with NICU PTSD, for the rest of their lives. Yet, one in eight do, will, until WE do something about it.
Support the March of Dimes, during Prematurity Awareness Month, and everyday. They are Fighting for Preemies, and for All babies.
Support your local preemie parent. WE ARE EVERYWHERE.
She has a friend who is 27 weeks pregnant with twin girls. Her friend is in the hospital, on the dreaded Magnesium Sulfate. Trying to keep those babies cooking, as long as possible.
It was shocking to us that we were so naive about pregnancy. We are both well educated women, who um, well, lets just say, "do our research." How could we not know, or maybe understand the epidemic of premature birth.
Maybe it is a blessing that we, as total worriers did not know, all that stress might have brought our kids even earlier!
Women give birth to term babies all the time. That is the norm, that is what we hear about. I knew I would not carry these babies to term. I have a small frame, small hips, just not a lot of room there to hold two babies. But did I ever think 26 weeks? That is just unheard of. 26 weeks. Think about that. More than three months early. Three months! Just into the third trimester. WHOA. How could I not know that this was even a possibility? I thought early, 36 weeks, 34 maybe.
One in EIGHT babies is born too soon. Look at 8 friends, at least one of them, statistically at least, should be touched by prematurity. That's the same number as women touched by breast cancer.
These are not all babies born addicted to drugs, or to teen moms, or mothers who did not have prenatal care. They are women like my friends, Lindsay, Jen, Nina, Saffron, Keri, Donna, Karissa, Educated Women who took care of themselves and their babies. Women who had no idea they would be a statistic of premature birth.
They had no idea that some doctor would come in and tell them that their child or children would not make it through the night, and if they did it would be a miracle. They had no idea that people would shake their heads every day that their children survived, and fought just to breathe. They had no idea that they would have to SIT and stare that their babies for days, weeks, before they could touch or hold their babies in their arms. They had no idea the kind of agony that would cause. How they would look around the NICU and see other moms or dads holding their babies, and they would fight back the tears as they wondered if their day would ever come.
Those parents would have no idea what an IVH, or a Oscillating Ventilator, or a High Frequency Ventilator, or a PICC line, or an umbilical line, or NEC, or a PDA, or a VCUG, or ROP or any of the many medical terms and procedures and equipment and all the things that could go wrong were. They would have no idea that they would spend endless hours at the beside of their barely alive child and then spend endless hours at home reading and researching all of the things they heard at the hospital that day.
Those parents would experience THAT moment. EVERYDAY. As they signed into the NICU and washed their hands. Searching the faces of the staff, for signs, was it a good day, was it a bad day, has anything changed, is my baby still alive? EVERYDAY. Intellectually you know they will call you if there is a problem and you need to get to the hospital quickly, because you've experienced THAT call already. But what if, in the time it took you to walk through that dead zone down that hallway in the hospital, they couldn't reach you. EVERYDAY.
Those parents, three plus years later, know that this experience will never fully leave them. There will still be days that while sitting in a park surrounded by moms and kids listening to a guy with a guitar sing "You Are My Sunshine" will bring a mom to tears, uncontrollable tears. There will still be days that hearing someone say they are 26 weeks pregnant and feel safe now will not make them want to shout, "YOU FOOL, you are NOT safe, you are a LONG, LONG way from safe". There will still be days that upon hearing that a friend of a friend is in the hospital at 27 weeks, their heart will not sink, and their eyes will not well up.
Those people, they, WE. We had no idea. Now we do and it still sucks. No one should ever have to go through that living hell. No child should ever go through half of the pain and suffering our children have been through in their young lives. No parent should have to look at her boys heels and see the scars from the constant blood draws, daily, twice daily, every three hours. No parent should have to see the scars on their child's back or chest, or belly from some procedure done before they were even supposed to be born. No parent should have to deal with NICU PTSD, for the rest of their lives. Yet, one in eight do, will, until WE do something about it.
Support the March of Dimes, during Prematurity Awareness Month, and everyday. They are Fighting for Preemies, and for All babies.
Support your local preemie parent. WE ARE EVERYWHERE.
Tuesday, November 17, 2009
Prematurity Awareness Month
November is Prematurity Awareness Month, and today is Prematurity Awareness Day.
I am very aware.
I am 26 weeks aware.
I am 5 months in the NICU aware.
I am three and a half years of specialists, medicines, aware.
I am one heart surgery aware.
I am one pneumothorax aware.
I am two laser eye surgeries aware.
I am one brain bleed aware.
I am countless blood transfusions, rounds of antibiotics, and procedures aware.
I am I wonder if my babies are going to be alive if I fall asleep aware.
I am afraid of the phone ringing aware.
I am thankful for every milestone reached aware.
I am amazed by every day aware.
I am ONE IN EVERY EIGHT BABIES AWARE.
Fight for preemies. Be aware.
I am very aware.
I am 26 weeks aware.
I am 5 months in the NICU aware.
I am three and a half years of specialists, medicines, aware.
I am one heart surgery aware.
I am one pneumothorax aware.
I am two laser eye surgeries aware.
I am one brain bleed aware.
I am countless blood transfusions, rounds of antibiotics, and procedures aware.
I am I wonder if my babies are going to be alive if I fall asleep aware.
I am afraid of the phone ringing aware.
I am thankful for every milestone reached aware.
I am amazed by every day aware.
I am ONE IN EVERY EIGHT BABIES AWARE.
Fight for preemies. Be aware.
Wednesday, November 11, 2009
We are so lucky
****Edited
I've written here numerous times about our friends, Dylan and Tyler, and their baby brother Colin. We are so lucky to have them in our lives. The boys have been "friends" since their very first days, side by side in the NICU.
We've weathered those first cold and flu seasons when terror struck every time someone had a sniffle. We've had to cancel many a play date, so we didn't infect each other. (The best friend a preemie mom can have is another preemie mom, we totally understand and are not offended by canceled plans. We'd all rather be safe than sorry!)
The boys ALWAYS have fun playing together, and Lindsay and I ALWAYS (although more so now days) enjoy chatting.
I can NEVER be in the presence of these four and now five boys without laughing, and smiling the day away. I can NEVER be in the presence of these children without marveling at how LUCKY we all are. Five babies that had such difficult starts, starts that defied the odds. Five boys who are walking (okay four), talking, BREATHING examples of LIFE.
ARUGH. I LOVE these kids!!!!!!
Dylan mugging for the camera.
Evan, Ryan and Tyler working on a co-op masterpiece.
Seriously, how can you not love these kids. How cute are they????
Being around these little miracles reminds me, brings into focus, clarifies, just how lucky we are.
And it also gives me hope and perspective when I hear from a friend in Ireland of his struggles with his newborn daughter.
Aoibheann is a term baby, born with some respiratory distress. She spent the first seven days in the NICU. John described some of the things they were going through, the oxygen, the tests, the inability to hold their baby, and snap, there I was back in the NICU. Immersed in the sights and sounds like it was yesterday. Feeling so many emotions and worry for my friend and his family. The NICU is a full sensory memory. You smell it, feel it, hear it, see it, just by closing your eyes. Those of us that have had extended stays will never be fully rid of that ability to remember.
I was overjoyed that Aoibheann and her family only had to spend seven days in hell, and when John posted that he was laying the couch with Aoibheann on his chest, I remembered that moment too. That peace, the contented feeling, the overwhelming joy. sigh.
Aoibheann was only at home for eleven days, she is now back in the hospital. They believe it is RSV. I've talked ad nauseam about the dangers of RSV to preemies, and how frightened we were when the boys were little that they would contract this common virus which can be fatal in children with respiratory issues. Needless to say, I am terrified for them.
Thank goodness they listened to their parental instincts and took her to the ER, even though her pediatrician said she would be fine. Thank goodness she seems to be improving. But they are on that roller coaster that we rode for five months. Weaning oxygen, increasing oxygen, doing better, doing worse, going home soon, staying longer. My heart is with them, I feel helpless for them, and I know how helpless they feel for their daughter.
I know how lucky we are...I hope beyond words that they will be too.
*******Aoibheann is home with her Mom, Dad and Sister.
I've written here numerous times about our friends, Dylan and Tyler, and their baby brother Colin. We are so lucky to have them in our lives. The boys have been "friends" since their very first days, side by side in the NICU.
We've weathered those first cold and flu seasons when terror struck every time someone had a sniffle. We've had to cancel many a play date, so we didn't infect each other. (The best friend a preemie mom can have is another preemie mom, we totally understand and are not offended by canceled plans. We'd all rather be safe than sorry!)
The boys ALWAYS have fun playing together, and Lindsay and I ALWAYS (although more so now days) enjoy chatting.
I can NEVER be in the presence of these four and now five boys without laughing, and smiling the day away. I can NEVER be in the presence of these children without marveling at how LUCKY we all are. Five babies that had such difficult starts, starts that defied the odds. Five boys who are walking (okay four), talking, BREATHING examples of LIFE.
ARUGH. I LOVE these kids!!!!!!
Dylan mugging for the camera.
Evan, Ryan and Tyler working on a co-op masterpiece.
Seriously, how can you not love these kids. How cute are they????Being around these little miracles reminds me, brings into focus, clarifies, just how lucky we are.
And it also gives me hope and perspective when I hear from a friend in Ireland of his struggles with his newborn daughter.
Aoibheann is a term baby, born with some respiratory distress. She spent the first seven days in the NICU. John described some of the things they were going through, the oxygen, the tests, the inability to hold their baby, and snap, there I was back in the NICU. Immersed in the sights and sounds like it was yesterday. Feeling so many emotions and worry for my friend and his family. The NICU is a full sensory memory. You smell it, feel it, hear it, see it, just by closing your eyes. Those of us that have had extended stays will never be fully rid of that ability to remember.
I was overjoyed that Aoibheann and her family only had to spend seven days in hell, and when John posted that he was laying the couch with Aoibheann on his chest, I remembered that moment too. That peace, the contented feeling, the overwhelming joy. sigh.
Aoibheann was only at home for eleven days, she is now back in the hospital. They believe it is RSV. I've talked ad nauseam about the dangers of RSV to preemies, and how frightened we were when the boys were little that they would contract this common virus which can be fatal in children with respiratory issues. Needless to say, I am terrified for them.
Thank goodness they listened to their parental instincts and took her to the ER, even though her pediatrician said she would be fine. Thank goodness she seems to be improving. But they are on that roller coaster that we rode for five months. Weaning oxygen, increasing oxygen, doing better, doing worse, going home soon, staying longer. My heart is with them, I feel helpless for them, and I know how helpless they feel for their daughter.
I know how lucky we are...I hope beyond words that they will be too.
*******Aoibheann is home with her Mom, Dad and Sister.
Monday, April 6, 2009
It's that season again.
This time of year is always difficult. I find myself thinking. Thinking a lot. It always sounds like this in my head.
"three years ago..."
"...I was in the hospital."
"...I was on mag."
"...I was missing my baby shower."
"...I was scared to death."
This year, it seems to be less. It could be that we are so busy there's very little time for reflection, or it could be the terrifying memories are fading. It could be that I look at my little boys everyday and see the distance between my fragile 2 pound babies, and my 30+ pound boys grow wider and wider with every moment.
It could be that I've got other things on my mind. There's the fact that my BABIES are going to be THREE! How did that happen?
It could be, that for the last 2.5 years we've had wonderful people in our lives and they are all about to go away. As the boys turn three, we are losing the wonderful services provided to us through the Watch Us Grow program. Our teacher, Melinda? Who has visited us once a week for 2.5 years? GONE. Our OT's Teri and Stacey? Whom we've seen for the last 2 years and 6 months respectively? GONE. Our super busy schedule? GONE. (mostly)
I'm really not sure how the boys are going to handle this absence of these people in their lives. The absence of this routine. Will they miss them? How long will they ask if we are going to see Miss Teri, Miss Stacey, or Miss Melinda? How am I going to fill this void in the boys lives?
It could be that I have friends and relatives going through difficult times in their lives, and it has me thinking about them constantly.
It could be that in our testing with the school district to determine if we qualify for any additional services, the boys blew it out of the water. The panel was blown away. They said that it is rare that they see kids like this, and that they were amazing. They loved testing them. They were engaging, bright and funny. They tested in the normal or above normal range in all areas. There were a couple of areas of note, and it really comes as no surprise to me, or anyone who has spent any time with these boys.
Language.
Both boys tested in the 99.96% for language. That's only .04% of 3 year old children that test higher. WOAH! I knew these kids talk a lot, and have great vocabularies, but dang, really? 99.96% really??? Cool.
The other area that blew my mind was Early Academics. This tests colors, shapes, numbers, letters, words, all of the pre-school readiness areas. The average is 85-115. Evan's score was 131. HOLY COW!
All of this confims my belief that I am soon to be in very big trouble. These kids are going to be out smarting me before their 4th birthday!
So this time of year, when I find myself reflecting on their difficult beginning, it's nice to have something to smile about.
"three years ago..."
"...I was in the hospital."
"...I was on mag."
"...I was missing my baby shower."
"...I was scared to death."
This year, it seems to be less. It could be that we are so busy there's very little time for reflection, or it could be the terrifying memories are fading. It could be that I look at my little boys everyday and see the distance between my fragile 2 pound babies, and my 30+ pound boys grow wider and wider with every moment.
It could be that I've got other things on my mind. There's the fact that my BABIES are going to be THREE! How did that happen?
It could be, that for the last 2.5 years we've had wonderful people in our lives and they are all about to go away. As the boys turn three, we are losing the wonderful services provided to us through the Watch Us Grow program. Our teacher, Melinda? Who has visited us once a week for 2.5 years? GONE. Our OT's Teri and Stacey? Whom we've seen for the last 2 years and 6 months respectively? GONE. Our super busy schedule? GONE. (mostly)
I'm really not sure how the boys are going to handle this absence of these people in their lives. The absence of this routine. Will they miss them? How long will they ask if we are going to see Miss Teri, Miss Stacey, or Miss Melinda? How am I going to fill this void in the boys lives?
It could be that I have friends and relatives going through difficult times in their lives, and it has me thinking about them constantly.
It could be that in our testing with the school district to determine if we qualify for any additional services, the boys blew it out of the water. The panel was blown away. They said that it is rare that they see kids like this, and that they were amazing. They loved testing them. They were engaging, bright and funny. They tested in the normal or above normal range in all areas. There were a couple of areas of note, and it really comes as no surprise to me, or anyone who has spent any time with these boys.
Language.
Both boys tested in the 99.96% for language. That's only .04% of 3 year old children that test higher. WOAH! I knew these kids talk a lot, and have great vocabularies, but dang, really? 99.96% really??? Cool.
The other area that blew my mind was Early Academics. This tests colors, shapes, numbers, letters, words, all of the pre-school readiness areas. The average is 85-115. Evan's score was 131. HOLY COW!
All of this confims my belief that I am soon to be in very big trouble. These kids are going to be out smarting me before their 4th birthday!
So this time of year, when I find myself reflecting on their difficult beginning, it's nice to have something to smile about.
Thursday, January 15, 2009
March for Babies
Ryan and Evan were born at 26 weeks.
During the pregnancy I did everything I could to ensure the health of my little guys. I was freakishly obsessive about my health. If one study showed something was possibly bad for fetuses, I eliminated it from my diet/lifestyle. I cut out coffee, chocolate, lunch meat, sushi (that one killed me), nitrates, everything and anything. Nothing was too much to sacrifice for these little ones.
None of it did any good. Twenty six weeks and two days in to the pregnancy, Ryan and Evan made their spectacular entrance into the world. In spite of numerous attempts by doctors to keep them safely in my womb, these two had minds of their own.
Sometimes that is just how it is. All the precautions, education and medical attention in the world can't always prevent prematurity. So much about why babies are born early is unknown. The March of Dimes is a wonderful organization dedicated to making sure that some day, every baby will be born healthy.
From their early work to find and develop a vaccine for polio, to their current work educating, funding important research in the areas of prematurity and birth defects, and advocating for babies...the March of Dimes is "dedicated to improving the health of babies."
Without the March of Dimes, the likely-hood that Ryan and Evan would be here with us today, is slim. In the 80's the March of Dimes funded research into Surfactant. A drug given to each of my babies. A drug that may have helped them breathe just a little easier. A drug that may have allowed their terribly premature lungs to heal just enough to keep them alive. A drug, that with out the support of the March of Dimes may not have been available to my precious (and many, many others) boys.
Why this March of Dimes PSA?
Well, my friend Lindsay, and fellow mom of preemie twins, recruited me to work on the Family Teams Council for the San Diego Chapter of the March of Dimes. One of our goals is to increase the number of Family Teams in our Chapter, and of course, the amount of money raised.
Putting my money and feet where my mouth is, we have signed up for the 2009 March for Babies.
Please join our team (Ostrem Family 2009)(come walk with us!), donate, or start a team of your own. Just follow the link here, or on the side bar, or on facebook, and stay tuned here for more info and progress reports.
Oh, and did I mention we have to walk 5 miles????
During the pregnancy I did everything I could to ensure the health of my little guys. I was freakishly obsessive about my health. If one study showed something was possibly bad for fetuses, I eliminated it from my diet/lifestyle. I cut out coffee, chocolate, lunch meat, sushi (that one killed me), nitrates, everything and anything. Nothing was too much to sacrifice for these little ones.
None of it did any good. Twenty six weeks and two days in to the pregnancy, Ryan and Evan made their spectacular entrance into the world. In spite of numerous attempts by doctors to keep them safely in my womb, these two had minds of their own.
Sometimes that is just how it is. All the precautions, education and medical attention in the world can't always prevent prematurity. So much about why babies are born early is unknown. The March of Dimes is a wonderful organization dedicated to making sure that some day, every baby will be born healthy.
From their early work to find and develop a vaccine for polio, to their current work educating, funding important research in the areas of prematurity and birth defects, and advocating for babies...the March of Dimes is "dedicated to improving the health of babies."
Without the March of Dimes, the likely-hood that Ryan and Evan would be here with us today, is slim. In the 80's the March of Dimes funded research into Surfactant. A drug given to each of my babies. A drug that may have helped them breathe just a little easier. A drug that may have allowed their terribly premature lungs to heal just enough to keep them alive. A drug, that with out the support of the March of Dimes may not have been available to my precious (and many, many others) boys.
Why this March of Dimes PSA?
Well, my friend Lindsay, and fellow mom of preemie twins, recruited me to work on the Family Teams Council for the San Diego Chapter of the March of Dimes. One of our goals is to increase the number of Family Teams in our Chapter, and of course, the amount of money raised.
Putting my money and feet where my mouth is, we have signed up for the 2009 March for Babies.
Please join our team (Ostrem Family 2009)(come walk with us!), donate, or start a team of your own. Just follow the link here, or on the side bar, or on facebook, and stay tuned here for more info and progress reports.
Oh, and did I mention we have to walk 5 miles????
Thursday, October 16, 2008
Deja Vu all over again
....and in a bad way.
Friends of ours from our NICU days have been on the road to having another baby. They decided on a surrogate in hopes of not having another premature baby.
Yesterday, I got a call from Todd. Their baby girl was born at 26 weeks, 6 days. She weighs less than 1000 grams. (That's around 2 pounds)
This news has floored me. I felt like someone punched me in the gut. At the same time I feel my chest tightening and all the air in my lungs is being squeezed out of me with a force so strong I cannot even begin to describe it.
I can't imagine Todd and Nina, back at the NICU, back for another long, long stay, with another medically fragile baby. My heart is aching for them.
*************************
My heart, its been aching for many people lately. There seems to be a terrible amount of sadness in my circle of friends right now. Death, baby loss, marriages crumbled, children suffering, and now this.
All of this heartache, a painful reminder to appreciate everyday, even the toughest of the tough.
Friends of ours from our NICU days have been on the road to having another baby. They decided on a surrogate in hopes of not having another premature baby.
Yesterday, I got a call from Todd. Their baby girl was born at 26 weeks, 6 days. She weighs less than 1000 grams. (That's around 2 pounds)
This news has floored me. I felt like someone punched me in the gut. At the same time I feel my chest tightening and all the air in my lungs is being squeezed out of me with a force so strong I cannot even begin to describe it.
I can't imagine Todd and Nina, back at the NICU, back for another long, long stay, with another medically fragile baby. My heart is aching for them.
*************************
My heart, its been aching for many people lately. There seems to be a terrible amount of sadness in my circle of friends right now. Death, baby loss, marriages crumbled, children suffering, and now this.
All of this heartache, a painful reminder to appreciate everyday, even the toughest of the tough.
Tuesday, August 5, 2008
Two weddings and a NICU
Two years ago, we had an addition to our family. No, not a baby or a pet. If I'm being perfectly honest, this addition came into our lives many years earlier. October 5, 2002. That just so happens to be the date we had two more additions to our family. Wow, this is getting confusing.
Here's what happened: Back in October 2002, Shelley, Scott's sister, married Todd. Therefore, Todd and Cassie (Todd's Daughter) became a permanent part of our family, whether they liked it or not.
On that same day, Scott's brother, Eric, decided to bring a "date" to Shelley's wedding. Okay are all of your warning bells going off. Who brings just a "date" to his sister's wedding. Yeah, the entire family was a twitter. If it wasn't the upcoming nuptials being discussed, it was this mysterious "date" Eric was bringing.
To shorten the story by about 10,000 words. Mary came to Shelley's wedding, fit in perfectly. Did not miss a beat, on the dance floor, or keeping up with this sarcastic, crazy family. She survived the wedding, and the three week European vacation with the entire clan, we decided to keep her and she's been with us ever since. (can't shake the girl)
So, now back to TWO years ago today, Eric and Mary were married.
Two years ago, Ryan and Evan were stillpermanent residents of the Infant Special Care Center.
Two years ago, a sobbing Motherwalked was dragged out of the Infant Special Care Center, to catch a plane to Oakland, to drive to picturesque Healdsburg, to participate in Maric's very special day. (oh, everyone in our family has combined names. Shelley, Todd and Madison= Shoddison. Scott and Janice = Scanice. I don't think we've come up with our name including the boys. Have I mentioned that this family is oddcute?)
I wouldn't have missed it for the world, but...as I sat there holding my babies, the thought of being away from them for more than a few hours, was killing me. You see, until this day, I had never gone a day with out seeing my boys. I'd been with them, EVERY. DAY. for four months. I made the trek to the hospital each and every day for four months. I sat by their beds, every day for four months. I KNEW they'd be safe. I'd made sure that our primary nurses were on duty for the weekend. We were going to be back Sunday morning. It was only one day.
In the world of the NICU, one day could be critical. In the NICU, one hour could be critical. You just never know. In one day a preemie can go from stable to critical, it changes that quickly. The only reason I could leave those boys, and go on plane, (where I'd be unreachable) was the knowledge that our primary nurses would be with them. They were the only people that knew those better than us. (Well, they didn't know them better, but they knew them and they have far more medical training than Scott or I, so really, they were safer with them than anywhere.) Funny, it still makes me sweat just a little to think about leaving them in the NICU alone.
It was really good for us to get away, to be with family, celebrating. The ceremony took place overlooking a vineyard, there was great food, dancing, laughter, and lots of love. The bride was gorgeous, the groom handsome. There was nary a dry eye in the place during the ceremony.
Scott and I spent a full day, breathing. Not focused on skin color, or numbers flashing on a monitor, or how many ML's someone ate. We were able to focus on the end game. We were able to recharge, relax and gear up for the home stretch.
Most importantly, we were there to share this with two very special people...
...and the boys were just fine.
Here's what happened: Back in October 2002, Shelley, Scott's sister, married Todd. Therefore, Todd and Cassie (Todd's Daughter) became a permanent part of our family, whether they liked it or not.
On that same day, Scott's brother, Eric, decided to bring a "date" to Shelley's wedding. Okay are all of your warning bells going off. Who brings just a "date" to his sister's wedding. Yeah, the entire family was a twitter. If it wasn't the upcoming nuptials being discussed, it was this mysterious "date" Eric was bringing.
To shorten the story by about 10,000 words. Mary came to Shelley's wedding, fit in perfectly. Did not miss a beat, on the dance floor, or keeping up with this sarcastic, crazy family. She survived the wedding, and the three week European vacation with the entire clan, we decided to keep her and she's been with us ever since. (can't shake the girl)
So, now back to TWO years ago today, Eric and Mary were married.
Two years ago, Ryan and Evan were still
Two years ago, a sobbing Mother
I wouldn't have missed it for the world, but...as I sat there holding my babies, the thought of being away from them for more than a few hours, was killing me. You see, until this day, I had never gone a day with out seeing my boys. I'd been with them, EVERY. DAY. for four months. I made the trek to the hospital each and every day for four months. I sat by their beds, every day for four months. I KNEW they'd be safe. I'd made sure that our primary nurses were on duty for the weekend. We were going to be back Sunday morning. It was only one day.
In the world of the NICU, one day could be critical. In the NICU, one hour could be critical. You just never know. In one day a preemie can go from stable to critical, it changes that quickly. The only reason I could leave those boys, and go on plane, (where I'd be unreachable) was the knowledge that our primary nurses would be with them. They were the only people that knew those better than us. (Well, they didn't know them better, but they knew them and they have far more medical training than Scott or I, so really, they were safer with them than anywhere.) Funny, it still makes me sweat just a little to think about leaving them in the NICU alone.
It was really good for us to get away, to be with family, celebrating. The ceremony took place overlooking a vineyard, there was great food, dancing, laughter, and lots of love. The bride was gorgeous, the groom handsome. There was nary a dry eye in the place during the ceremony.
Scott and I spent a full day, breathing. Not focused on skin color, or numbers flashing on a monitor, or how many ML's someone ate. We were able to focus on the end game. We were able to recharge, relax and gear up for the home stretch.
Most importantly, we were there to share this with two very special people...
...and the boys were just fine.
Monday, July 14, 2008
Lil' grads and their Moms and Dads
On Saturday we attended our second Lil' Grad Picnic, sponsored by the NICU where the boys spent the first 5 months of their lives. This is really a wonderful event where the families of some of the sickest NICU babies come together to celebrate just how far we have come.
This year we were much more, um, interactive. Last year we were walking around, but very easily containable. This year, we were on the move. Ryan enjoyed the huge bouncy slide, Evan, preferred the hula hoops.
Both boys loved the Am-ban, and the wooo-oooo-oooo. (Ambulance and Police Car)
Neither boy stood still for long, as we were leaving one of the nurses mentioned that she hadn't seen the boys in the same place all day, she wasn't kidding.
I think the only time we were together for more than, 30 seconds was when we settled down for lunch with our friends, (Lindsay, Jamie, Dylan and Tyler, Jen, Brian, Linus and Sadie) Yeah, look closely. That's three sets of ex-preemie twins and their parents, having a leisurely a peaceful lunch. Actually, it was really nice. The six kids allowed the six parents to have a conversation that lasted more than one minute at a time. (See how far we have come?) 
At this table alone we represent preemies born at 26, 27 and 29 weeks. Kids that have survived NEC, collapsed lungs, IVH's, infections, blood transfusions, eye surgeries and a list of many other things. Kids that were given slim chances of survival, and if they survived, well, there might be "other problems". If you met these kids on the street, you wouldn't know how sick they once were...how far we have come.
This year we were much more, um, interactive. Last year we were walking around, but very easily containable. This year, we were on the move. Ryan enjoyed the huge bouncy slide, Evan, preferred the hula hoops.
Both boys loved the Am-ban, and the wooo-oooo-oooo. (Ambulance and Police Car)
Neither boy stood still for long, as we were leaving one of the nurses mentioned that she hadn't seen the boys in the same place all day, she wasn't kidding.
I think the only time we were together for more than, 30 seconds was when we settled down for lunch with our friends, (Lindsay, Jamie, Dylan and Tyler, Jen, Brian, Linus and Sadie) Yeah, look closely. That's three sets of ex-preemie twins and their parents, having
At this table alone we represent preemies born at 26, 27 and 29 weeks. Kids that have survived NEC, collapsed lungs, IVH's, infections, blood transfusions, eye surgeries and a list of many other things. Kids that were given slim chances of survival, and if they survived, well, there might be "other problems". If you met these kids on the street, you wouldn't know how sick they once were...how far we have come.
Wednesday, June 25, 2008
Together again, at last.
Okay, so I'm still 52 items short on my list of 100 for my 100th post, but...two years ago today, was a very special day.
Two years ago, my boys were reunited after sixty-eight days apart, they were finally co-bedded.
I went to the hospital early, because I certainly couldn't enjoy myself if I hadn't seen my boys, cuddled for a while and got pushed out of the NICU by my nurses, rushed home, changed, and enjoyed my day of being showered. The girls went all out. The house was decorated so cute, the food was very yummy, and there was wonderful company. Of course I spent the day talking about the boys, when we thought they might come home, etc. I was really overwhelmed with the love. (Thanks again for a great day, Maya, Suzanne, and Angie)
Peggy was so good about making sure things got done, even when people were a little nervous about it, she'd get right in there and say, what's the worst that could happen, or it can't hurt. I think she was going to be out for a couple of weeks and wanted to make sure they got co-bedded on her watch! It took a few minutes for them to adjust to another squiggly, wiggly thing in their bed, but once they realized that it was their womb mate, they both settled in and really started to thrive. Their events were fewer, they seemed calmer overall, and gosh it was just so darn cute to see them all bundled up together.
That was really the only negative. It was wonderful that the boys were finally well enough to be together, at last. This was the beginning of the long, and (what seemed to be) never ending homestretch. (is it possible for a homestretch to last two months?)
This is it, THE moment they were reunited.
Ryan mauling Evan.
Evan returning the love.
Two years ago, my boys were reunited after sixty-eight days apart, they were finally co-bedded.
I remember the day so well. It was a special day for me too. My dear girlfriends were throwing me my postponed baby shower. It was a combined effort. I was supposed to have 3 showers, (I know! but there were lots of people REALLY excited about these babies) The first was to be in Sacramento, which I missed while I was in the hospital on bed rest. (sorry Shelley!) I attended it by speaker phone, and I enjoyed hours of video tape a few days later. After the early arrival of the boys, we postponed the other two showers until we were a little more confident that the boys would survive.
I went to the hospital early, because I certainly couldn't enjoy myself if I hadn't seen my boys, cuddled for a while and got pushed out of the NICU by my nurses, rushed home, changed, and enjoyed my day of being showered. The girls went all out. The house was decorated so cute, the food was very yummy, and there was wonderful company. Of course I spent the day talking about the boys, when we thought they might come home, etc. I was really overwhelmed with the love. (Thanks again for a great day, Maya, Suzanne, and Angie)
The party broke up, and Scott returned home. I can't remember exactly what he said, but it was something to the effect of "don't be upset" Alright, you NEVER say that to a Mom with babies in the NICU. My heart dropped. He quickly followed it up with the reason I might be a little upset. Our nurse Peggy had decided that this would be the day that the boys would be placed in the same bed. Can you believe that I missed it???? I still can't.
Peggy was so good about making sure things got done, even when people were a little nervous about it, she'd get right in there and say, what's the worst that could happen, or it can't hurt. I think she was going to be out for a couple of weeks and wanted to make sure they got co-bedded on her watch! It took a few minutes for them to adjust to another squiggly, wiggly thing in their bed, but once they realized that it was their womb mate, they both settled in and really started to thrive. Their events were fewer, they seemed calmer overall, and gosh it was just so darn cute to see them all bundled up together.
The bad news about co-bedding was that now we were only allowed two people bedside at a time instead of the four that we had gotten accustomed to, and on this weekend we had tons of people (all the Grandmas, Maya, you know, tons) in town who wanted to come to the NICU to see the boys. Our NICU had a strict policy that for each bed, you may have two visitors at a time, one of which must be a parent or guardian. When the boys were in separate beds, we had four visitor slots, three could be guests.
That was really the only negative. It was wonderful that the boys were finally well enough to be together, at last. This was the beginning of the long, and (what seemed to be) never ending homestretch. (is it possible for a homestretch to last two months?)
This is it, THE moment they were reunited.
Ryan mauling Evan.
Evan returning the love.
Friday, June 13, 2008
Evan sees a dentist.
It's been a rough few weeks with Evan. His eating has been even more of a challenge than before. I've been spending an hour shoving food into his mouth, as he screams, fights and cries, and then spits out the entire bite. Rinse, and repeat, about a thousand times per meal.
Out of desperation last week, I cut out all of Evan's bottles. (except his before bedtime bottle) No more Boost Plus, and milk. All in an effort to make him feel hungry, in hopes that he might just eat something, anything. Or at least the battles might stop. Well, a week and two pounds of weight loss later, there was no change. Mealtimes were still battles.
Next straw to grasp at? Maybe it's his teeth! I noticed his gums still covering his molars. I thought maybe it's an infection! I managed to get him into see a pediatric dentist on Tuesday. He was not very happy to be visiting yet another doctor.
Out of desperation last week, I cut out all of Evan's bottles. (except his before bedtime bottle) No more Boost Plus, and milk. All in an effort to make him feel hungry, in hopes that he might just eat something, anything. Or at least the battles might stop. Well, a week and two pounds of weight loss later, there was no change. Mealtimes were still battles.
Next straw to grasp at? Maybe it's his teeth! I noticed his gums still covering his molars. I thought maybe it's an infection! I managed to get him into see a pediatric dentist on Tuesday. He was not very happy to be visiting yet another doctor.
Well, $85 later, we now know, his teeth look great. We are doing a good job brushing, and there are no problems with his mouth that are interfering with his eating. And, we left a bit happier than when we arrived.
This week we have been quite busy with appointments. On the same morning Evan went to the dentist, his brother Ryan went to see the Opthamologist. (Evan's appointment was on Thursday) Because of our ROP we see the pediatric Opthamologist every six months. After our last trip, I decided that we had to split them up, the hysterics were way too much for just me to handle.
Splitting the boys up like this is interesting. We've only done it a few times, but each time I am profoundly shocked by how easy it is to only have one child. At the dentist, I was able to console Evan with my full attention. At the eye doctor, we played, drew, read books, just the two of us. I didn't have to divide my attention. I didn't have to keep one eye on Ryan. I didn't have to bring the stroller. I had one hand free as we were walking to and from the car. It's crazy how much easier one child is! I've always said that having one is having one, and having two is like having three, and that feeling just gets larger exponentially with each child, but there is nothing that can better illustrate that fact like having one on one time. Now I want to establish some fun one on one time with each of the boys. I don't want their only singleton time to be at the doctor's office.
From a medical standpoint. Both boys eyes are holding stable. They will still both need glasses in the future, but right now their eyesight is not hindering their development, so we will wait, and continue to be followed every six months. Both boys did so well at the appointments, there were a few tears, but for the most part, the drama was kept to a minimum.
Monday, April 28, 2008
Hard to Handle
***This should have been posted yesterday, the two year anniversary but, who has time to look at a calender?
My Ryan was 21 days old before I was able to hold him. TWENTY-ONE DAYS I sat and watched him breathe, or not as the case may be, watched him struggle for life. Watched him have surgery to close his PDA. Watched him puff up like the Stay Puff Marshmallow man after surgery. Watched him endure countless procedures, ventilators, and blood transfusions. Just watched him. Watched other moms hold, nurse, kangaroo care their babies.
For Twenty-one days I did everything I could to touch my babies with out causing them to stop breathing, I learned how to change their diapers, hold them down for blood draws, or procedures, anything to touch them and assure them I was there. For twenty-one days, they were just to unstable to hold.
We read in our Preemie book that babies sense of smell was very powerful, and they could certainly smell their Mothers. The book suggested wearing a washcloth next to your skin to let your scent penetrate the fabric, placing it in the incubator for the preemie to smell your presence. We did this. We also cut up some receiving blankets because our well intending nurses would clean out the boys isolettes and get sometimes get rid of the said washcloths.
It was torture. I wanted so desperately to hold and cuddle my children. But obviously, keeping them breathing was far more important than what I wanted.
We finally got our moment. Our Nurse Cindy was brave and decided that this was going to be the day. I don't think everyone in the NICU had her confidence that this was the right time to try.
As we made the transfer from the bed to my arms. Ryan had a major desaturation in his oxygen levels and the attempt was almost aborted.
On the left, is the Respiratory Therapist, and Nurse Cindy is on the right, what you can't see is the Attending Doctor, Evan's Nurse, the Fellow, the Resident all standing nearby, watching, waiting, hoping they did not have to jump in a rescue Ryan.
We made the transfer, and I carefully held Ryan. After he settled in, his O2 levels stabilized, and the "team" breathed a little easier too.
Ryan clung to my finger and sucked contentedly on his breathing tube for a half an hour. My joy in finally getting to hold this precious little thing was indescribable, and only dampened by poor Evan lying alone in his isolette. (Where he would stay for another two weeks)
My Ryan was 21 days old before I was able to hold him. TWENTY-ONE DAYS I sat and watched him breathe, or not as the case may be, watched him struggle for life. Watched him have surgery to close his PDA. Watched him puff up like the Stay Puff Marshmallow man after surgery. Watched him endure countless procedures, ventilators, and blood transfusions. Just watched him. Watched other moms hold, nurse, kangaroo care their babies.
For Twenty-one days I did everything I could to touch my babies with out causing them to stop breathing, I learned how to change their diapers, hold them down for blood draws, or procedures, anything to touch them and assure them I was there. For twenty-one days, they were just to unstable to hold.
We read in our Preemie book that babies sense of smell was very powerful, and they could certainly smell their Mothers. The book suggested wearing a washcloth next to your skin to let your scent penetrate the fabric, placing it in the incubator for the preemie to smell your presence. We did this. We also cut up some receiving blankets because our well intending nurses would clean out the boys isolettes and get sometimes get rid of the said washcloths.
It was torture. I wanted so desperately to hold and cuddle my children. But obviously, keeping them breathing was far more important than what I wanted.
We finally got our moment. Our Nurse Cindy was brave and decided that this was going to be the day. I don't think everyone in the NICU had her confidence that this was the right time to try.
As we made the transfer from the bed to my arms. Ryan had a major desaturation in his oxygen levels and the attempt was almost aborted.
On the left, is the Respiratory Therapist, and Nurse Cindy is on the right, what you can't see is the Attending Doctor, Evan's Nurse, the Fellow, the Resident all standing nearby, watching, waiting, hoping they did not have to jump in a rescue Ryan.
We made the transfer, and I carefully held Ryan. After he settled in, his O2 levels stabilized, and the "team" breathed a little easier too.
Ryan clung to my finger and sucked contentedly on his breathing tube for a half an hour. My joy in finally getting to hold this precious little thing was indescribable, and only dampened by poor Evan lying alone in his isolette. (Where he would stay for another two weeks)
Sunday, April 13, 2008
Two years, 55 Adults, and 13 toddlers...what was I thinking?
Yesterday we held the boys birthday bash. Are we exhausted today. The boys were so worn out, they slept in until 7:30 this morning. Generally wake up around here is between 6:00 and 6:30, so that extra hour was like finding a million bucks. Ah yes, and there was nary a peep from either boy all night. (now that's a gift) Also, thank goodness my Mom was here, she did so much work helping us prep and clean up.
I once loved entertaining, and I actually still do but it is considerably more difficult these days. There is nothing more fun than having a bunch of your friends over to eat, drink and be merry. Be it store bought or long slaved in a hot kitchen, good friends and good conversation are the key components. However post children good conversation consists of something more like this:
"So, what have you been up to?"
"Evan, noooo."
"Wow, how exciting, wha....Ryan, we don't eat trash"
"When did you...Evan, we don't stand on the slide"
"Does someone have poop in their pants?"
and good food, well, is usually eaten so fast that it's hard to tell the difference between good, and horse meat.
We had 55 adults and kids, plus 11 toddlers (not including our two) under 3 here today. I'm not sure what I was thinking except that there were a lot of people that a)hadn't seen the boys, EVER. or b) hadn't seen the boys in a long while and/or c) were our good friends. Those three things make for a large party.
I decided on a bubble theme so we had lots of bubble wands, plus we set up our sand table, water table and the swing set we got for the boys birthday. Oh, and we made sure all of our ride on outdoor toys were available. (cars, slides, airplanes) There were lots of other things, you know, food, cake, drinks, etc. The important thing is the boys had a BLAST, we got to see 65 of our closest friends and relatives, and we all survived!
I have to say that there were large chunks of time that I had NO IDEA where my kids were. With 55 adults around, I suppose that isn't a huge problem. If someone had started climbing our rocks, well, I'm sure there would have been an adult or two that stopped them, right? But because I had these lapses in parenting, I was able to have some nearly complete conversations. Wow how nice it was. Yes, I was distracted by the other 64 or so guests, making sure that the food stayed restocked, and occasionally grabbing one of the other 11 kids out of the grasp of danger, but really this was a great way to get some adult conversation. Now I know, a 5 to 1 ratio should be fine.
Many of our friends and relatives noted how well behaved all of the kids were. They seemed down right shocked that there were no fights or tantrums. I wasn't. We have great friends with great kids. The parents were all there to step in before anything got out of hand, even if I wasn't!
There was one moment when I realized I could only see Evan. I got a wee bit panicked. I shouted "Has anyone seen Ryan?" and I got a lot of No's. Then all of a sudden he toddled out from behind a table responding to my call. He had playdough in his hand, a grin on his face, and he greeted me with a big "HIIII!" Whew.
I was shocked (and very proud) at how independent the boys were. Evan has been having some issues with clingy-ness and so I thought he might be glued to one of us during the whole occasion, but NOOOO. These boys were happy as two pigs in mud. Running around the yard and house with no restrictions. I'd get drive-by hugs, or smiles, and then they were off again. Playing with this or that, talking to one of their admirers or just being. The only time they got a bit clingy, was at the very end of the night, which is to be expected. The distractions were fewer, they were beyond tired, and it had been a Long, Long day.
(Gosh, I hope I got those right, I'm usually better at telling the boys apart, but the chocolate, it's distracting me!)
The Birthday Boys enjoying some cupcakes of their own 
I didn't get pictures of all of our friends, I hope others who took pictures will pass them along, please (smile), but one of the most remarkable things about this group of kids is of the 13 toddlers, 7 had prolonged stays in the NICU with us, (okay none as long as us, but really, how many babies stayed as long as us?) and one more had a very short stay. It is a true testament to the parents of these kids (and the wonderful care we received in the NICU), most of whom were so terribly sick, that they are all thriving, energetic, bright lights in our lives. When you look at the statistics for preemies, and then you look at our children, all I can say is wow. I'm so proud to call all of you fellow alums of the NICU. As for the other 5 kids, well, you know, you're pretty special too.
Thanks to everyone who came out to help us celebrate.
Sunday, March 16, 2008
Preemie? Who you calling a Preemie?
While our stay in the NICU was stressful, to say the least, there were some things that we are happy to take away from the experience. If we had to have an NICU stay, we were fortunate to encounter a wonderful group of families that were also living through this frightening time.
It was alwaysshocking interesting to me that there weren't more parents at the bedsides of their critically ill infants. There was no place else I could be. I was compelled, drawn by an unseen force to be right there with my babies, every possible moment, of every day. I know there were some that had to go back to work, or care for other children and that must have been agonizing. I also know there were some that just chose to stay away for other reasons, and I wonder about those babies almost every day.
As hard as it is to be in a NICU, with all the lights and beeping, studies have proven that for critically ill infants, contact with their parents (or even another loving human -cuddler) can aid in overall health improvement, significantly. NICU's around the world encourage Kangaroo Care for preemies because they have found both the babies and parents respond favorably. Just a parents mere presence bedside can help a preemie relax and calm down. I experienced this first hand many, many times during our five months in the NICU. There were days when one of our boys was having a tough time, brave nurses would let me hold the breath holding peanut, and for the entire time he was on my chest, his breathing would regulate and stabilize. Or in the weeks before we could touch our boys, the sound of our voices reading or singing through the portholes would always seem to calm them down.
Oh, but I digress...There were a few families that were ALWAYS at the beside of their child, or children. Because we were all sharing a common experience, and because we were all the same kind of dedicated, persistent, engaged parents, we all began to bond. The bonding didn't really start until we all made it out of "A" nursery. "A" is where the very critically ill babies live, the baby to nurse ratio is 2:1. These babies have loads of procedures, lots of "episodes" and require vigilant monitoring. Back in "C" and "D" nursery, the babies are presumably much more stable, in open cribs, off of oxygen, and don't require the hourly stat checks. Back in "C" and "D" the parents are also more stable, we are, sadly, old hands at this NICU thing. Once your babies are back in "C" and "D" you are anxiously awaiting the "go ahead" to take your little bundles home. There seems to be no time at all, but still, much more time for bonding.
Those families we saw every day, and every night have now become some of our great friends. We still share that special bond, we all have similar shared experiences, and therefore approach much of our parenting in the same manner. We are/were able to commiserate in a way that most parents cannot. Battling insurance companies, and pediatricians for Synagis, to keep our babies safe from RSV , navigating the host of specialists, doctors appointments, follow-up clinics and all the other things that come with having a premature infant.
We finally got together with a few of our NICU friends on Friday, it had been a while since these three families had been together all at once, and wow was it fun!
Try getting 5 under twos to pose for a picture, notice, my boys are the only ones not sitting still for the camera. Lilian and Lealand were born in June, Haedyn was born in May, and My boys were born in April, almost exactly one month apart for all of them! (By the way, Lilian, Lealand, and Haedyn all went home before Ryan and Evan!)
Saffron said that I tired her kids out and so she had to carry them to the Elephant Overlook. Don't know what she's talking about, we do this "workout" at least once a week!!!!
Haedyn enjoyed climbing and walking along the benches with his mom Nina.
It was really nice to get out with our friends. It is always so inspiring to see just how well all of these kids are doing considering what an incredibly difficult start they had. I say it's partly because we were all engaged and present everyday in that NICU, and everyday since.
It was always
As hard as it is to be in a NICU, with all the lights and beeping, studies have proven that for critically ill infants, contact with their parents (or even another loving human -cuddler) can aid in overall health improvement, significantly. NICU's around the world encourage Kangaroo Care for preemies because they have found both the babies and parents respond favorably. Just a parents mere presence bedside can help a preemie relax and calm down. I experienced this first hand many, many times during our five months in the NICU. There were days when one of our boys was having a tough time, brave nurses would let me hold the breath holding peanut, and for the entire time he was on my chest, his breathing would regulate and stabilize. Or in the weeks before we could touch our boys, the sound of our voices reading or singing through the portholes would always seem to calm them down.
Oh, but I digress...There were a few families that were ALWAYS at the beside of their child, or children. Because we were all sharing a common experience, and because we were all the same kind of dedicated, persistent, engaged parents, we all began to bond. The bonding didn't really start until we all made it out of "A" nursery. "A" is where the very critically ill babies live, the baby to nurse ratio is 2:1. These babies have loads of procedures, lots of "episodes" and require vigilant monitoring. Back in "C" and "D" nursery, the babies are presumably much more stable, in open cribs, off of oxygen, and don't require the hourly stat checks. Back in "C" and "D" the parents are also more stable, we are, sadly, old hands at this NICU thing. Once your babies are back in "C" and "D" you are anxiously awaiting the "go ahead" to take your little bundles home. There seems to be no time at all, but still, much more time for bonding.
Those families we saw every day, and every night have now become some of our great friends. We still share that special bond, we all have similar shared experiences, and therefore approach much of our parenting in the same manner. We are/were able to commiserate in a way that most parents cannot. Battling insurance companies, and pediatricians for Synagis, to keep our babies safe from RSV , navigating the host of specialists, doctors appointments, follow-up clinics and all the other things that come with having a premature infant.
We finally got together with a few of our NICU friends on Friday, it had been a while since these three families had been together all at once, and wow was it fun!
Try getting 5 under twos to pose for a picture, notice, my boys are the only ones not sitting still for the camera. Lilian and Lealand were born in June, Haedyn was born in May, and My boys were born in April, almost exactly one month apart for all of them! (By the way, Lilian, Lealand, and Haedyn all went home before Ryan and Evan!)
Saffron said that I tired her kids out and so she had to carry them to the Elephant Overlook. Don't know what she's talking about, we do this "workout" at least once a week!!!!
Haedyn enjoyed climbing and walking along the benches with his mom Nina.It was really nice to get out with our friends. It is always so inspiring to see just how well all of these kids are doing considering what an incredibly difficult start they had. I say it's partly because we were all engaged and present everyday in that NICU, and everyday since.
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