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| Just finished the 2011 March for Babies in Grant Park, Chicago. We actually ran the 5k and WON the race/walk. The only race we ever win are the ones the others walk :) |
Today is one of those days, where really, we pause and realize who we need to be thanking and supporting. If you haven't figured it out by now, our little world here in Northern Illinois revolves around 2 crazy 5 year olds. But, 5 years ago, things weren't as day-to-day crazy, but more minute-to-minute of survival. Today we took time out of our day to support the March of
Dimes! Today was our 5th 'March' to support the March of Dimes through their national event, March for Babies.
Dimes! Today was our 5th 'March' to support the March of Dimes through their national event, March for Babies.
Nearly 40 babies are born every day in the Chicagoland area that easily fit in the palm of your hand. Many many of those babies struggle thru the next few days/weeks/months, just to survive. Nearly 1 in 8 babies born in the United States, every day, are born prematurely. We were in that unlucky percentage. Never did we think we'd get past 4 pounds....but we did. At nearly 50 today, and almost 4 foot tall, we can't imagine our ognry stinkers anywhere, but here. Through great innovations in our NICU and amazing care by doctors and nurses alike, we are lucky and fortunate to have 'made it'! Our kiddos still have a few lingering issues reflecting their prematurity, but otherwise, there are as healthy as their friends and teamates in T-Ball.
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| First Family Photo - one day old |
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| Day 1 - feeding time! |
I won't lie, it's been a really long road. Emotionally....we are in a great place now. A few years back, I couldn't say the same thing. Today, as we ran the 5k with hundreds of thousands of other families who have been affected by prematurity, I once again realized how lucky we are. The March of Dimes is doing great things and I'm more happy than ever to not just support them, but teach my children about that they do, and re-tell them their story...and what other familes go thru as well.
Please take a moment today to check out their site Here to understand how much they do every day for people that we all know and love. I am lucky to be a volunteer for them at Northwestern Memorial in Chicago (read article below here to learn more) and march with them every April!
Below are some very personal stories that have been posted online in various locations prior to today. I'm compiling them - hoping that others can understand what WE have been through - and that we're GREAT today! If you have never been through this before, I pray you can do what you can in the future to help others going thru these similar situations.
As Sawyer Brown said it best, I Gotta Give Credit Where Credit is Due - so THANK YOU March of
Dimes!
As Sawyer Brown said it best, I Gotta Give Credit Where Credit is Due - so THANK YOU March of
Dimes!
Here is an article I wrote that was published late last year on my new-found strength in handling this situation just recently:
ILLINOIS STATE SAGA
ILLINOIS ORGANIZATION OF MOTHERS OF TWINS CLUBS, INC.
December 2010
By Tabitha Stine
Tabitha Stine
Here is a letter I sent in 2007 to our Special Care (NICU) Nurse at Northwestern Memorial in Chicago that I also posted in 2007 on the March of Dimes Share Your Story Site :
Hello Susie!
Hi, This is Tabitha Stine. My daughter Madyson and I did the photo shoot with you last April on the March of Dimes that was published last May in the Pioneer Press. As you may or may not remember, Madyson was one of our twins who was in the SCN for two weeks after birth for Bradycardia, was eating from a tube, and was born with a subdural hematoma. I had Madyson vaginally and Kaiden was born by c-section 2 hours later. My doctor, Dr. Scott Hite, assured me that it is common for twins to be born early, but I know that no one prepared us for those two weeks. Living in the far south suburbs of Flossmoor, and having Kaiden already discharged from the SCN when I was discharged, we were in the horrible situation of not being able to go home since we neededMady too. In a state where I was crying continuously by the minute, we fell into the best luck in the world, the SCN support staff had answered our prayers...they put us up in a temporary house at the Worcester House, that is both adjacent to Prentice and owned by NMH. We only had to pay $40 per night for this wonderful service. This made the logistics possible for Chris and myself to care for Kaiden (who was with us at the Worcester House...and sleeping in my overnight bag suitcase that we converted to a crib that was lined with diapers and blankets that Prentice had given us) and also go to go to 6 of every 8 of Madyson's feedings, while also being able to bring Kaiden with us at night when possible. We really had no family with us up there at the time, so we didn't have the traditional support structure that most are accustomed to. We found this need from the SCN nurses. Two that stood out that I would give anything to be able to talk to today and pass along our thanks are to a girl named Gina...who was with us right after Madyson and Kaiden were admitted into SCN and on and off for that two week period. Even when I was inconsolable, her friendly face and confidence in Madyson's progress gave me the strength to get from day to day. The other nurse that seemed to be our angel, was a girl by the name of Jamie. Again, I never got their last names, but if you can do some checking to pass along this to them, I would be greatly appreciated. Madyson was on her 'Brady Watch' for several one to two day stints when she would relapse...and we often felt that we could never become optimistic, because at any time she would have to start the five day period over and then we would be another week living away from home in a small apartment with our also 4 pound son. Madyson also had quite a few feeding issues, with not accepting the breast or the bottle and was mostly fed by tube for the first week. One day during that first week, we transferred to a new SCN room, where we had a new nurse, Jamie. Jamie quickly recognized Madyson's sucking issues and established a plan to teach her how to suck. At first I was very nervous about Jamie' somewhat 'boot camp theory on feeding'... at some times flicking the bottom of Madyson's feet to get her to suck....but at the end of the first day, we had seen dramatic progress. She would sit with me each feeding and watch each of her mannerisms and teach ME how to teach HER. Jamie gave us the understanding that Madyson could be teached...and we did teach her. As our luck would have it, on Easter Morning, Madyson pulled out her tube and also had her last Brady episode after over one week in SCN. From Easter morning on, we counted down five days and were able to go home that following week. When Madyson pulled out her tube, the doctor decided not to put it back in unless she needed it.... And as our prayers were answered, she didn't. On Easter Sunday Madyson started eating on her own, and no tube needed was again and she never had another Brady. One doctor, in addition to the two nurses that helped us through that time, was Doctor Bonnie Moskowitz. I have never met such a nice person that would sit with me when I cried and told me the truth in the most compassion as Madyson was having her spinal taps and CT scans to determine the cause of her subdural hematoma. Her kindness and professionalism is second to none and she should be commended for her excellent skills and patient relationships.
When Chris and I were told we were expecting our twins, we had no idea what would happen, but we were always confident everything would be fine. As we fast forwarded to April 8, 2006 when they were both born and taken to SCN, we were definitely unprepared and scared out of our mind. One special girl from the SCN counseling staff (or possible a SCN counselor) went out of her way with finding us the place to stay so we wouldn't have to deal with that issue. She was a young girl with long curly brown hair. Again, I don't remember her name but if you know who she is, please pass along my thanks. The two weeks in SCN were the most trying of our life, with two 4 pound twins, in different places that demanded all of our attention. My husband and I are both structural engineers, and we quickly learned the corporate life means nothing when something like this happens. In the end, we would not be where we are today without NMH and the staff of the SCN. Second to none, I will never hesitate to recommend this facility to anyone, high risk pregnancy or not....It is the best. If we ever decide to have more children, our only choice will be Dr. Scott Hite and NMH.
Well, since last April 8, our twins are now almost one year old and growing with leaps and bounds. Madyson is now 21 ½ pounds Kaiden is 24 ½ pounds. They are crawling everywhere and are walking slowly around the couch. I took off four months of work to stay home with them, and now work from home most of the time, with exception of a couple days when I am downtown. We have a nanny that comes to our house everyday to watch them at home. They are both 100% healthy and developing perfectly. Besides the common colds and ear infections, they are great! Again, I attribute this success to the good care at NMH early on. They now eat everything in sight, and I am still breastfeeding both of them as well. Since they never learned to latch, they both have used nipple shields since the day they learned to finally nurse from me at 3 weeks old. (again, without the Lactation Consultants at NMH....I would have given up the first week...and of course my frequent calls to the NMH Breastfeeding Helpline which also saved me) It has worked great for me and after many attempts, they were never able to wean from them....so as long as it worked, we were fine. Kaiden had to have three months of physical therapy last fall due to low trunk strength, but is now easily caught up to his big sister Madyson. I have had a tumultuous year with returning to work and finding the time to try and do everything...the belief that we all have to be super-moms has took a toll. With little sleep and feeling continuously overwhelmed, I finally am starting to see the light and know that we will survive this. But when I think back to those days in the SCN.... I still cry at the drop of a hat. I don't know if I will ever get past that, but I hope it will someday. Not only our babies, but seeing all those other sick babies has never escaped me. All four of us will be participating in the March of Dimes walk this April. I feel it is our little way to say "we made it, we're stronger now, and anyone can make it through this if we can".
As I approach their first birthday coming up on Easter Sunday, I am scrambling to get their scrapbooks and baby books up to date...and I came across the photo from the newspaper you mailed me last May. I am sure you can understand, life with twins doesn't allow too much time for scrap-booking. I did receive it and thank you so much. I wanted to take this time.....finally.... to email you and let you know how we are doing. I have enclosed a few pictures. If you could find the time to either forward this to the people I mentioned above, or pass along their email addresses to me directly, I would really like to thank them myself as well.
Thank you so much Susie for everything you have done for me and my family.
Best regards,
Tabitha
By Tabitha Stine
Turning Trauma to Opportunity for Change
It was only 5 years ago when were told “Not only are your pregnant…but you’re having Twins!” As others who have been in this situation, immediate feelings of happiness/confusion/misunderstanding/joy quickly entered our thoughts. “How will we make it?” was a common thought. Our family lived over 3 hours away. We both had grown up in small towns with multitudes of family close by to lend a helping hand – not anymore. So many raging thoughts went thru our minds that first month….and then we hit our ‘stride’ and came to the realization that we ARE going to make it and – it’s gonna be perfect! From that point on, we truly began enjoying the pregnancy. We found out we were having boy/girl twins due in mid May of 2006 and spent the pregnancy months soaking up every moment: reading books, joining our local twins club to load up on goodies at the sales, custom painting a jungle in the nursery, and planning showers and of course – growing, growing, growing by the week! And then….at 35 weeks, while enjoying dinner out with friends, my It took me nearly two years to be able to even consider the concept of visiting a NICU again – I was too afraid of reliving those horrible memories. Another year after that, one of my best friends had a baby born premature and I visited her in the NICU – given it was a different hospital, but that step was huge for me in the healing process. I soon realized that I’m not a health professional, but learned I had most likely suffered from a form of PTSD – post traumatic stress disorder. Nothing I had planned for or expected…but it happened. Our twins are now 4 years old – happy and healthy – and I am doing great as well. Earlier this year, I realized that there was more I can do to help ‘give back’ to others going thru similar situations. I now volunteer to be on the Northwestern Memorial Hospital (NMH) NICU graduate parent panel. This program, sponsored by the March of Dimes, is instrumental in sharing with current NICU families – that is will be ‘ok’. We provide them with meals where we share ‘our stories’. Not only is it a sound of reason from a parent in a similar situation in a scary environment – it’s also very therapeutic for us. While I was in this process of having one twin in the NICU and twin in standard hospital nursery care, I learned a tremendous a lot about areas needed for improvement – and the need for more family centered care. In September 2010, I had the opportunity to participate in an all day conference where I was one of 4 parents what shared our 'stories’ with over 150 health care providers – and areas where we recommend improvements to not only improve nursing care for children, but by encouraging more family centered care: involving parents in rounds, exploring more options for integrating parents in caring for their children in the NICU, and lastly - providing counseling support for families in these situations while their children are patients – but also down the road. It’s easy for my husband and I to get wrapped up in the everyday drama of raising strong willed 4-year olds that seem to tug on our patience at every turn. But then I remember….how lucky we are. We have been thrown into this experience for a reason. We as parents are stronger people because we made it thru this – and we have the ability to reflect on our experience and use that to help improve future families’ experiences as well. How can we make it more comfortable…and how can we provide ideas to improve care – so future families can handle and cope with these concepts better than what we did. This is what drives me as a parent – I’m lucky…my family is lucky….I want to make others lucky and it’s my time to ‘pay it forward’ and do what I can to help others be stronger ‘survivors’ than what I was.
We weren’t prepared – but didn’t seem to be concerned that this was ‘too early’. I was actually excited it was coming early since I had already gained 75 pounds and was purely miserable as my body was nearly what I considered - its limit. We went to the hospital that evening and was in labor for nearly 24 hours. The following night at 9:27pm and 11:32pm, our daughter and son were born! It was a very traumatic birth, both a natural and c-section…but all in all, we were all ok. However, what happened over the next two weeks from that point on, made a more profound impact on my life than anything else that had happened to me up until that point. Being born at 4lbs, the twins were taken to the NICU for observation at our hospital - Northwestern Memorial Hospital in Chicago. Over the course of the next two weeks, Kaiden spent two days as a NICU patient, Madyson was there the entire two weeks. I suffered a strong infection as well. There came the point when I was ready to be discharged after 1 week of being a patient….and I was told that only my son was ready to be discharged as well. I don’t believe any parent is ever prepared to come to the hospital with two car seats – only to leave with one. Since we didn’t live close to the city – actually an hour and a half away due to traffic – the hospital worked with us and set us up a place to live – at a small dorm nearby for only $40/night. We were adjacent to the hospital and were able to come back and forth for most feedings, and give our children the opportunity to co-sleep during the day.
The time spent in the NICU was one of the most challenging moments in our lives. Our daughter was not eating from a bottle, she was having major bradycardia breathing issues, struggling from jaundice difficulties, and had to undergo a spinal tap….which determined she was born with a subdural hematoma. The emotional stress of our child going thru these issues was some of the most difficult days of our lives. We were in a large open bed environment where we met other families and learned about other babies’ issues. In our short two week stint, we witnessed two families lose their children. We weren’t involved in their lives – but witnessed these tragic events…and were left with the only thoughts of “Is our baby next?”. No counselors were there to check on us….as parents….to ensure we were ‘ok’. Tremendous care was taken to ensure the speedy recovery for our children….but for us as parents we felt the need to be ‘strong’ and just keep ‘chugging along’ for the sake of our kids.
When we finally made it home – day one, we were so excited to be finally ‘home’ as a family….and no longer in that stressful environment. However…a few days later – everything calmed down and the trauma started to set in. I would think about those babies that didn’t make it….and I would think ‘What if that was us?’ I wasn’t a medical professional, I had never been a parent before, and in the last two weeks I had been thru the ultimate war to not only save my child – but also survive myself. Had I survived? I found that the memories and issues would continue to haunt me…. The images, alarms, and nuggets of time - were now part of who I was.
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| Here with Madyson and Nurse Susie Rosenburg, Northwestern Memorial Hospital. |
Here is a letter I sent in 2007 to our Special Care (NICU) Nurse at Northwestern Memorial in Chicago that I also posted in 2007 on the March of Dimes Share Your Story Site :
Hello Susie!
Hi, This is Tabitha Stine. My daughter Madyson and I did the photo shoot with you last April on the March of Dimes that was published last May in the Pioneer Press. As you may or may not remember, Madyson was one of our twins who was in the SCN for two weeks after birth for Bradycardia, was eating from a tube, and was born with a subdural hematoma. I had Madyson vaginally and Kaiden was born by c-section 2 hours later. My doctor, Dr. Scott Hite, assured me that it is common for twins to be born early, but I know that no one prepared us for those two weeks. Living in the far south suburbs of Flossmoor, and having Kaiden already discharged from the SCN when I was discharged, we were in the horrible situation of not being able to go home since we neededMady too. In a state where I was crying continuously by the minute, we fell into the best luck in the world, the SCN support staff had answered our prayers...they put us up in a temporary house at the Worcester House, that is both adjacent to Prentice and owned by NMH. We only had to pay $40 per night for this wonderful service. This made the logistics possible for Chris and myself to care for Kaiden (who was with us at the Worcester House...and sleeping in my overnight bag suitcase that we converted to a crib that was lined with diapers and blankets that Prentice had given us) and also go to go to 6 of every 8 of Madyson's feedings, while also being able to bring Kaiden with us at night when possible. We really had no family with us up there at the time, so we didn't have the traditional support structure that most are accustomed to. We found this need from the SCN nurses. Two that stood out that I would give anything to be able to talk to today and pass along our thanks are to a girl named Gina...who was with us right after Madyson and Kaiden were admitted into SCN and on and off for that two week period. Even when I was inconsolable, her friendly face and confidence in Madyson's progress gave me the strength to get from day to day. The other nurse that seemed to be our angel, was a girl by the name of Jamie. Again, I never got their last names, but if you can do some checking to pass along this to them, I would be greatly appreciated. Madyson was on her 'Brady Watch' for several one to two day stints when she would relapse...and we often felt that we could never become optimistic, because at any time she would have to start the five day period over and then we would be another week living away from home in a small apartment with our also 4 pound son. Madyson also had quite a few feeding issues, with not accepting the breast or the bottle and was mostly fed by tube for the first week. One day during that first week, we transferred to a new SCN room, where we had a new nurse, Jamie. Jamie quickly recognized Madyson's sucking issues and established a plan to teach her how to suck. At first I was very nervous about Jamie' somewhat 'boot camp theory on feeding'... at some times flicking the bottom of Madyson's feet to get her to suck....but at the end of the first day, we had seen dramatic progress. She would sit with me each feeding and watch each of her mannerisms and teach ME how to teach HER. Jamie gave us the understanding that Madyson could be teached...and we did teach her. As our luck would have it, on Easter Morning, Madyson pulled out her tube and also had her last Brady episode after over one week in SCN. From Easter morning on, we counted down five days and were able to go home that following week. When Madyson pulled out her tube, the doctor decided not to put it back in unless she needed it.... And as our prayers were answered, she didn't. On Easter Sunday Madyson started eating on her own, and no tube needed was again and she never had another Brady. One doctor, in addition to the two nurses that helped us through that time, was Doctor Bonnie Moskowitz. I have never met such a nice person that would sit with me when I cried and told me the truth in the most compassion as Madyson was having her spinal taps and CT scans to determine the cause of her subdural hematoma. Her kindness and professionalism is second to none and she should be commended for her excellent skills and patient relationships.
When Chris and I were told we were expecting our twins, we had no idea what would happen, but we were always confident everything would be fine. As we fast forwarded to April 8, 2006 when they were both born and taken to SCN, we were definitely unprepared and scared out of our mind. One special girl from the SCN counseling staff (or possible a SCN counselor) went out of her way with finding us the place to stay so we wouldn't have to deal with that issue. She was a young girl with long curly brown hair. Again, I don't remember her name but if you know who she is, please pass along my thanks. The two weeks in SCN were the most trying of our life, with two 4 pound twins, in different places that demanded all of our attention. My husband and I are both structural engineers, and we quickly learned the corporate life means nothing when something like this happens. In the end, we would not be where we are today without NMH and the staff of the SCN. Second to none, I will never hesitate to recommend this facility to anyone, high risk pregnancy or not....It is the best. If we ever decide to have more children, our only choice will be Dr. Scott Hite and NMH.
Well, since last April 8, our twins are now almost one year old and growing with leaps and bounds. Madyson is now 21 ½ pounds Kaiden is 24 ½ pounds. They are crawling everywhere and are walking slowly around the couch. I took off four months of work to stay home with them, and now work from home most of the time, with exception of a couple days when I am downtown. We have a nanny that comes to our house everyday to watch them at home. They are both 100% healthy and developing perfectly. Besides the common colds and ear infections, they are great! Again, I attribute this success to the good care at NMH early on. They now eat everything in sight, and I am still breastfeeding both of them as well. Since they never learned to latch, they both have used nipple shields since the day they learned to finally nurse from me at 3 weeks old. (again, without the Lactation Consultants at NMH....I would have given up the first week...and of course my frequent calls to the NMH Breastfeeding Helpline which also saved me) It has worked great for me and after many attempts, they were never able to wean from them....so as long as it worked, we were fine. Kaiden had to have three months of physical therapy last fall due to low trunk strength, but is now easily caught up to his big sister Madyson. I have had a tumultuous year with returning to work and finding the time to try and do everything...the belief that we all have to be super-moms has took a toll. With little sleep and feeling continuously overwhelmed, I finally am starting to see the light and know that we will survive this. But when I think back to those days in the SCN.... I still cry at the drop of a hat. I don't know if I will ever get past that, but I hope it will someday. Not only our babies, but seeing all those other sick babies has never escaped me. All four of us will be participating in the March of Dimes walk this April. I feel it is our little way to say "we made it, we're stronger now, and anyone can make it through this if we can".
As I approach their first birthday coming up on Easter Sunday, I am scrambling to get their scrapbooks and baby books up to date...and I came across the photo from the newspaper you mailed me last May. I am sure you can understand, life with twins doesn't allow too much time for scrap-booking. I did receive it and thank you so much. I wanted to take this time.....finally.... to email you and let you know how we are doing. I have enclosed a few pictures. If you could find the time to either forward this to the people I mentioned above, or pass along their email addresses to me directly, I would really like to thank them myself as well.
Thank you so much Susie for everything you have done for me and my family.
Best regards,
Tabitha
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