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Hi Tommy:
My grandson Alex Samuel was born April 1 at 27 weeks, weight 1 lb 11 oz. He's had his share of As and Bs, but basically he is doing OK and no weighs over 3 lbs. My daughter Dana being able to kangaroo him a lot helps. We look forward to him coming home. Preemies are very, very special.

Al


Hi Tommy:

Thanks for your great page. My baby daughter Fern was born 2 days ago (01:17 on 26.5.96) at 26 weeks and 2lbs 2oz. I feel guilty for taking solace in the misfortune of others, but I note that compared to most she is really quite large! During the birth her mother Monika couldn't have any pethadine and couldn't face an epidural, so I gave her poetry instead. The next day when we were struggling for a name Monika asked about one of the poems I had read - it was Fern Hill by Dylan Thomas - and there we were!

Fern's grandma says that a fern is small and delicate and beautiful but grows just as well in the shade as it does in the sunlight. I have saved your page onto the lap top and will take it into the hospital now. They are in the NICU of the Whittington Hospital, North London and I have never known such joy as when she opens her eyes at the sound of my voice and looks in my direction. She even holds my little finger. I must go straight back there now. When I am there, I feel useless and want to go home - yet the moment I leave I am desperate to return..

Thanks for your communication. I wish you health and happiness,


Steven, Monika and Fern Buttling-Smith

steven@monkfish.demon.co.uk



Hi Tommy:
My story is much like yours. Ashley Danielle Gordon was born at 23 weeks gestation on April 21, 1995 weighing in at 1lb 2 ounces. Her due date was August 16, 1995. I was diagnosed with Toxemia 5 days before Ashley was taken. Toxemia is a condition where the body becomes very swollen and usually shows up in the 9th month of pregnancy, but in my case it was much sooner. I entered the hospital on a Monday. By Wednesday the doctor said I would be able to go home the next day for bed rest. Thursday came and he said that I had worsened and the baby would be take by C-section within 48 hours. There was no way I could handle this news. I knew it was way too early for her to be born. I could not handle the fact that my baby would die. At 2:00 a.m. Friday morning I awoke with difficulty breathing. The doctor said it was time that they take the baby. I was devastated. I was taken to the OR at 9:00 and by 9:49 Ashley was born.P> My mother went into the OR with me (because my husband gets sqemish). She said that when they pulled her out, she made two little "peeps". The doctor said that was a good sign. Before she was born, the neonatologists told me she had a 50/50 chance of survival and asked if we wanted everything done to save her. Of course we said yes.

Ashley was put on a ventilator called an Ossolator. This machine kept her breathing, but at the same time, caused damage to her lungs. Her skin was translucent. You could see her veins clearly and almost make out her internal organs. Ashley was put under "No Stim" which means absolutely NO stimulation (except from nurses to take blood and doctors to examine).P> This meant that we could not touch our little girl. After a week, she was taken off "No Stim" and we got to touch her for the first time. Premature babies have very thin skin and organs. Ashley's stomach became very swollen and purple. The doctor said that they had to do exploratory surgery. They told me that she may not survive the surgery, but she definitely would not survive if the surgery was not done. They found a hole the size around of a writing pen in her stomach. The doctor sewed her up and said she would be fine. That was the first "scare".

The second was when she was 3 weeks old and weighed only 14.5 ounces (she had lost her fluid weight from birth). Her lungs had become very damaged by the ossolator and they began to bleed. The nurses were constantly suctioning her lungs to remove the blood so she could receive oxygen. Our usual neonatologist was out of town this night so the doctor on call called us at 3:00 in the morning to tell us she would not live another 5 hours. We immediately rushed to the hospital to be with her when she died. The doctor told us there was nothing else they could do for her. She was on the highest settings on the ossolator and she was on 100% oxygen and she was still de-sating around 70 to 75%. He told us that she would have to turn herself around now. My mother was there and she started reading directly out of the Bible (I do not go to church and I am not very religious, but I do believe in god). Thirty minutes later, the nurse started to pull some blood for a blood gas and she said, "The color looks better". God once again gave us a miracle, she was going to live for a lot more than five hours!s!!!

We never really had another bad "scare" like those first two, but Ashley did have to have a PDA (Paitent Ductous Artery) surgery to close an artery that didn't close after birth. That was a breeze. It was a ten minute surgery that had basically no complications. Ashley's only other real problem was trying to nipple feed. She had been tube fed for the first three months of her life. But she was getting bigger and they wanted to prepare her to go home. This took about a month and, after 4 months and three days, she was released.

We have had nothing but joy in our life since Ashley was born. Although we went through a lot, God was there with his miracles to show us that there is always hope. God showed his final miracle at Ashley's 1 year checkup. She is an absolutely normal baby. We have had no complications, not even with her lungs. The doctors told us before she was born that even if she did survive, she would have very severe complications. I'm glad they were wrong. Today Ashley is 13 months old and she just got her first tooth. She doesn't crawl yet, but she is pulling herself up on anything that is her size. She eats like a little pig and she sleeps through the night
(finally).

I just wanted to share another success story to help give hope for those that are going through the never-ending hospital visits and the anguish of premature birth. It seems like it will never end, but it does and now that we're home, I can hardly remember my baby's first home.

Crystal Gordon
csm@wfc.com



Hi Tommy:
I'm a mother of 2 preemie babies , one is 6 now and a great child. she weighed 4lbs 14inches Now I'm a new Mommy again of a 35wk preemie but she was what you'd call Fetal Retarded Growth she weighed 2lbs 10oz. 143/4inches long. I had gone in to the high risk clinic for a normal prenatal visit there the doctor said the baby had to come that day he said the baby stopped growing and if the baby didn't come today the baby can be in a lot of drainage , my placenta prematured so latter that night I gave birth to a healthy baby girl she was out of the NICU at 2weeks old. Kassandra Colleen is my miracle Baby ..................



Hi Tommy:
I would like to tell the story of Kassandra.. she is a 35wk preemie, weighing 2lbs 10oz. 14 inches long. She was what is called a Fetal Retard Growth , basically my placenta prematured and she quit growing ..

I had gone in for an office visit and the doctor said the baby is in serious danger and needs to come out, so they sent me to Labor and Delivery the baby was breech so they turned her and began the process of labor nothing happened over several hours so they wheeled me into surgery for a C-Section.

I delivered a healthy baby to everyone's surprise... the only thing she needed to do was eat on her own and maintain her body temp ...
She was discharged at 2weeks old.
Kassandra is a real live baby doll :)

Weny Heinzen
rheinzen@isd.net



Hi Tommy:
My name is Jim Tomes, my wife Trish and I are the grandparents of a 24 weeker. His name is Jerod. Jerod's mother was unable to care for Jerod and has turned over custody of him to us. We are very interested in knowing more about preemies. I would give you my E-Mail address but I'm a real beginner at this interney stuff and will have to get the help of a friend to get that to you but rest assured, I will. Jerod was born Nov. 1, 1995 at Memorial Mission Hospital in Asheville NC. He was 1 lb. 9 oz. at birth. He lost weight to 1 lb. 2 oz. before beginning his trip home. He came home with us in mid Feb. I'll be back in touch when I can provide you an E-Mail address. Thanks for this page. It's great.at.t..

Jim Tomes


Hi Tommy:
My name is Cindy, mom of twins Eric and Aaron. The twins are ex-26 weekers and have many problems secondary to prematurity. I enjoyed my visit to your web page and would like to invite you to our new home page at: http://user.aol.com/cynthia679/bissell.html
Cindy

Cynthia679@aol.com
The Bissell Home Page


Hi Tommy (and Tommy's parents):
What an experience! Thank you for sharing it. My own son (full term) spent his first night in a level 3 NICU (having been transferred from the suburban hospital where he was born). Fortunately for us his difficulty adjusting to life on the outside lasted only a few hours. It was a very scary time for us, and it only lasted one day. After things settled down, I felt almost guilty having the healthiest baby in the ward.

We had the extra complication of an older child who was very upset that the suburban hospital wouldn't let her see her new brother (the hospital with the level 3 NICU did let her hold him the following day). My mother in law was wonderful taking care of her (my husband had been born 9 weeks prematurely in the early 60's, so she of any of our relatives understood what we were going through).

I'm glad you are doing so well.

Cyndi Bliss



I just read your sons story on my friends Internet and I will be going on line shortly. My son was also born very prematurely and I felt like I was reading our story when I read yours. Spencer was born August 17, 1994 at 24 weeks gestation and he weighed 1 lb 7 oz and was 12 inches long. Like your son, he was hospitalized for 87 days in the NICU. He came home November 12, 1994.

I am curious about his development and will write back to you soon.

sincerely,
Alysia Nelson



Hi Tommy:
We are doctors that help take care of premature babies like you. We're so happy to see that you are doing well. We work in a NICU in Pittsburgh, PA and love to hear wonderful stories like yours. We are sooooo! impressed with the quality of your web site (are you sure that your Mom and Dad didn't help??!!). We especially liked your contagious giggle and we're anxious to share your story with all of our friends.

Keep up the good work and stay healthy!

Bob Cicco and Sharon Galli
72167.507@compuserve.com



Hi Tommy:
My daughter was born 4-24-96 eleven weeks early at 2 lbs 5 oz. Her name is Jessica Ann and she has done extremely well. She is no longer in the ventilator or IV and only requires minimum oxygen. Her only problem currently is occasional bouts with brady spells, I was wondering if any other parents have had preemies with these problems and if they outgrew them. Jessica is now 2lbs 8 oz and eating 21cc every 3 hours. Your page has been very helpful, thank you.

Russell Howell
Russell@cmhcsys.com



Hi Tommy:
Loved seeing your pictures! I make clothing for premature babies like you and have for almost 11 years now. Recently I created a catalog and would like to share it with more parents. My oldest birth child was born at 31 weeks and my youngest at 34 wks. They were both big for their age and healthy (after weeks of bed rest for me!). Hope you'll tell all your newest friends about me! I am just beginning to work on adding my catalog to my home page but will send one to anyone who e mails me and requests it..

Pat Cotter
pcotter@cdsnet.net

http://home.cdsnet.net/~pcotter/



Hi Tommy:

Hope you are well. We are the proud parents of Savannah Alisyn Middleton, who was born 8/13/95 at 25 weeks. She weighed 1 pound, 11 ounces. At one week of age, she came down with Spinal Meningitis (E-Coli) and had an extremely hard time getting over that. She was on the Sensormedic ventilator for 7 days at birth and then was placed on a conventional vent after that. She was extubated at two months of age (Friday the 13th) (a GOOD day for us!). Shortly after that she was diagnosed with stage 3 ROP and underwent several laser surgeries on both of her eyes. They went well, but the Dr. informed us that the left eye's retina was threatening to detach. With Christmas coming near, and Savannah getting better, we were looking forward to taking her home, when the Dr. called us and said she had a really bad bug this time (serratia). She underwent numerous transfusions. People were coming in from all over to donate blood for her. God was looking after her and on the fourth day she was eating again! Then, the eye Dr. decided he needed to do a victrectomy and place a gas bubble in between the lens and the retina. This was to be done on the 21st of December. All hopes of getting her home for Christmas were dashed! However, she came through the surgery very well, and on December 23rd, we brought our little girl home!

The last few months have been spent getting to know our little girl and trying to be on time to all the Dr. visits. All is going well, with the exception of her eyes. As a result of the victrectomy, there has been a cataract form on the back of the lens. The Dr. tells us that the lens will have to be removed and that we will need to insert a contact lens each day for her.

All of this would not have been possible were it not for the help and support of the Doctors and Staff at Valley Baptist Medical Center in Harlingen, Texas.

Sincerely,

\Bob and Laurell Middleton
bobmid@hiline.net



Hi Tommy:
A great web-site and helpful to know that many other parents have survived the ICN (as well as their babies!). My son Ian deserves a page all his own and someday we will compose one. But right now our time is spent in the ICN with him. He was born in October, 1995 and is already 6 months old. He was only 5 weeks early but has other disabilities. His main one being lung problems. He is still on a ventilator and will go home with one (he has a trach). But he is a happy guy! And I'm looking forward to his toddler hood as well. Take care and best of luck!!! P> Ian Newberry's Mom
minnimowz@aol.com



Hi Tommy:
I'm so happy that things have so far worked out as well for you as they have for my two boys. All 3 of you are real fighters. Both of them were incredibly premature (13 and 15 weeks early). Reading stories like yours just brings it all back for me as if it was yesterday. It also makes me wonder at the ability of tiny tiny babies to have such a huge desire to be here. I hope things continue to go well for you.

Kate Hampson
hampsonka@peg.apc.org



Hi Tommy:

My wife, Viviane, is a preemie and is interested in how other adult preemies have done in their lives, both medically and emotionally. Also, how have their parents outlook on their children been different from other non-preemie children?

Irv



Hi Tommy:
Last night I was watching Betsy, my 10 year old daughter. We were at her cousins wedding, She danced ALL night, charmed everyone at the reception and delighted her parents. Typical ten year old stuff.

but I remembered.....

Ten years ago she was in her 5th month at The University of Michigan's Holden NICU. At that time she weighed about 2 and a half pounds. She was born on:

    December 12, 1985
    weighing 1lb, 10z.
    11 inches long
    25 weeks gestation

Your Mom and Dad will also look back at the beginning of your life and be amazed that it really happened to YOU.

I'd like to share the story of Betsy (they called her "Itsy Bitsy Betsy" at Holden). She was there for seven months - longer than her Mom was pregnant. She is a happy, healthy normal 4th grade kid!!

It would be a different perspective for you younger preemies - and help your families to look forward to a time when all the premier nightmare is OVER and you feel liked it happened to someone else - I mean life is so NORMAL now..

How do I share her story? (It will be long, even after I cut it down) Does anyone want to hear about it after 10 years? Let me know if you do.

Love, Life and Happiness

Pam White
PEXW13A@prodigy.com



Hi Tommy: My name is Heide Estep. I live in Ft.Worth Texas. I want you to know that it is 2:00 in the morning right now and I have stayed up to read your incredible story. I'm a new mom as well. My baby and his daddy are in bed snuggling one another while I type endlessly to complete strangers.:) My heart goes out to you and all you have endured. The courage you have as parents couldn't be matched by any other. I love my baby to death and at times get very frightened at the thought of losing him. And for you mom, a high five for the breast-feeding stuff. I'm doing it too. If your Thomas is anything like Dillon, it took a lot of time, patience and squeezing many stressballs to continue.

I hope all is going well with you and your family. And from this day forward you are in my thoughts and prayers. When you look at your baby sleeping, or smiling, you can think of nothing else but the miracle of it all. I commend you once again. I'm going to bed!!

Good night and God bless you all

:)

Zzzzz

Heide Estep



Hi Tommy:
Our son was born 3/1/96, at 31 weeks. I had been having premature labor for many weeks, and had been hospitalized for leaking fluid & labor at the beginning of Feb. Then I was on bed rest - that was the pits. We also have a 3 1/2 year old, who was having trouble understanding that mommy couldn't do anything except lay around.

On 2/29/96, I was having labor pains (again/still), and then my water broke. The local hospital was not equipped to deliver a preemie, so I got another ambulance ride (they did the same thing in Feb. when I was having problems) to Chicago.

The labor was worse mentally, since we didn't know what to expect the baby to be like - ie, would he have a lot of problems, would he even be ok. All in all, it turned out just fine. 12:43 am on 3/1/96 Conner Thomas joined our family, weighing in at 4# 9oz, 17 in. long. On 3/25 he came home from the hospital, on a heart/apnea monitor and some medication.

I'm working from home now, and my husband will be at home this summer (he's a teacher). The hardest part for us right now is the limitations due to the monitor, and especially hard is all the questions from all the relatives and friends - ie, what happened to cause me to have him early (boy, wish I knew the answer to that one), the phone rings all the time, and everyone wants to know the latest on his dr. appt's, or how much he weighs now.

I was very happy to find your web site, we all need support and can help each other!

Sandy Livingston
slivi@interaccess.com


Hi Tommy:
My name is Christine and my son Colin was born on 4/4/96 at 30 weeks. He weighed 3 pounds, 5 1/2 oz at birth. He is in the NICU at Sweedish Hospital in Seattle, WA. Today, I got to go home from the hospital (of course without Colin). I was feeling very sad and lonely tonight and couldn't sleep well. I decided to log on and search the web hoping to find something that I could read and learn from. I'm really glad I found your story. So much of this is still so new to me, but just watching the photos of you growing made me happier. I am looking forward to sharing this site with Colin's dad, and also with my partner. Keep up the good work at growing stronger and stronger!

- Christine

aron@wolfenet.com



Hi Tommy:
I am a secretary in a Level III Newborn Center which includes a NICU. I found your nursery while Surfing Local WebPages. A Neonatologist In Mississippi (where I live) had a link to you. You have done a fantastic job and I do commend you and I will tell Our parents about you. Good Luck. Bye.

Linda



Hi Tommy:
We work in an NICU as a registered nurse (new orientee) and as a respiratory therapist (old timer). Your story is very inspirational and it will help us to assist the babies and parents in our unit. Thank you for sharing your story!!

God Bless You!

Kimberleigh & Roberto



Hi! Thanks for the reply! I think the point I was trying to make was that Logan has cortical vision impairment and has light perception only in both eyes. He is doing great though and does not know that he is considered handicapped in some circles! I thought it was interesting that Tommy and Logan seemed to have been born under similar circumstances at about the same time and that Tommy has a visually impaired cousin. Although it can be disturbing to think about Logan's vision problem, we try very hard to concentrate on the many, many positive things about him, not the least of which is that he is alive, happy and healthy. We had a very positive NICU experience, both with Logan's progress and with the staff. They became like our extended family and we still visit up there occasionally. Your page is very touching and I appreciate the opportunity to share our experiences with someone else who has "been there".

Sincerely, Mary Lynn Glenn



Hi Tommy: With all of the success stories I have been hearing from friends, relatives and reading stories off of this web page, I can't help but feel encouraged with respect to my baby son. Davis William Gysin was born March 1, 1996, 2 lbs 0.8 oz, and only 25 weeks old. When the doctors said it was going to be a roller coaster of highs and lows, they were not kidding. The first low was that Davis was not getting everything he needed from his first respirator. He was then put on something called an oscillator. His lungs stay expanded and spirals of air go in and out of his lungs very rapidly. This action caused Davis to shake. That's pretty scary to look at. The first and second high was that Davis' cranial ultrasound were negative, no bleeding on the brain. He then went back to a more normal respirator, and work continued to close his PDA (patent ductus arterliosis, probably incorrect spelling). The medicine used to close the PDA only closed it temporarily, so the last straw was to surgically close it. On his 2 week birthday, he had his first, and hopefully last, operation. The surgeon said the procedure went textbook, and Davis' respirator rates and pressures have been improving ever since. I am sure another low will come around the corner, but I am sure it will be followed by a couple of highs. I've talked long enough. Great web page and everyone keep praying and hang in there.


Will Gysin, Davis' Dad
willg@american.megatrends.com


Hi Tommy:
I read your story and it brought tears to my eyes. My son Stephen was born at 28 weeks weighing 1lb, 14oz., on Dec. 27, 1993 (Due March 18, 1994) I developed severe preeclampsia in my 28th week and Stephen had to be delivered via emergency c-section. My husband and I had no idea a baby so small could be saved! Stephen's medical course was very similar to yours Tommy. He was on and off the ventilator, developed infections, dropped down to 1lb, 8oz, had C-PAP, Decadron, etc.,. Stephen came home around his due date (on oxygen, apnea monitor, pulse-ox and about 8 or 9 medications), and was hospitalized the next month for hernias. In July of 94, Stephen aspirated on formula in the middle of the night. We called 911 and they were there within 3-4 minutes. Stephen was reintubated (that was so hard for us) in Alexandria Hospital in Virginia, and then moved to the Pediatric ICU at Georgetown University in Wash., D.C. We really thought we were going to lose him after coming so far... He remained on the ventilator for 10 days, and was released 4 days later. Stephen was on oxygen for the first 22 months of his life, but it never slowed him down!! He has been oxygen free since Sept. and is down to 1 medication (Propulsid for reflux.) Stephen is now 2years and almost 3mos. and is a very, very active little boy. He has some fine motor skill issues that seem to be correcting themselves, and is delayed in his speech somewhat. However he says Mama, Dada, Barney (ugh!!), NO and mine very clearly. We feel so blessed to have Stephen and are constantly amazed by the ever-present smile on his face after all he has gone through...He is our inspiration as I'm sure you are your parent's inspiration, Tommy.


Sherri Lehman
slehman@corn.org


Hi Tommy:
You would probably be interested in our new WWW site. It is an informational program,For Parents of Preemies: Answers to Commonly Asked Questions. We would like suggestions for additional sections from parents. The parts that are under construction will be ready this summer. We also plan to add pictures.


Jane E. Brazy, MD
jebrazy@facstaff.wisc.edu

URL of Interest:


Hi Tommy:
Our son Nicolas is born on September 30th, 1995 at 25 weeks of pregnancy. His weight was 1 pounds and 9 ounces. He spent 7 weeks in the NICU of Ottawa¹s General Hospital (Canada). After, he was transferred at the neonatal unit of our local hospital, where he spent 8 weeks. Except for a few blood infections in the first weeks, Nicolas was doing well. He has been on the respirator for the first 3 weeks of his life. After that, because he was beginning a lungs disease due to the oxygen, they put him on a steroids treatment for 3 weeks. After one day of this treatment, they took the respirator out of his lungs. Nicolas was supposed to be born on January 10th, 1996. He left hospital the day before that date. He weighed 5 pounds and 4 ounces. At 5 1/2 months, Nicolas weigh about 8 pounds and is doing very well.


Marie-Josée and Stéphane
marijo@atreide.net


Hi Tommy:
I'd love to share our story in detail. Our Meredith was born on 2/20/94,10 1/2 weeks early (due to premature rupture of membranes). Praise God she had no serious complications. She was what the NICU calls and F & G (feeder and grower) meaning she was just "doin' time" to grow (birthweight was 2lbs. 14 oz) We had some negative experiences in the NICU that I would like to with other preemie parents. After Meredith came home we were faced with a very fussy baby for several months. As Meredith began to blossom (or when her "preemieness" faded to the background) I found myself unable to shake my feelings of grief (the loss of traditional pregnancy), sadness, anger, and unbelievably a longing for her preemie days when she was so tiny and each day was a miracle in our lives. To this day (we just celebrated her 2nd b-day) I am still nagged by those feelings. I look through my thought journals, look at the NICU videos and pictures, and get out her old preemie clothes that don't even fit some of her dolls. I'm curious if there are other preemie parents who feel similar emotions. For each birthday, and for her NICU homecoming, we made up a newsletter to send to friends and family. I'd like to share those with you,(some of the stuff is downright hilarious.) If you are interested, please contact me at your convenience. I'm new at this cyber-stuff, so if this is not possible, I understand. It was great reading Tommy's story. It made me cry, but it was worth it!


Christine Durrenberger
sdurrenberger@mem.com


Hi Tommy:
Hello. I am the parent of a 29 week preemie. Our daughter, Paige was born at 1lb.8oz.at Balboa Navel Medical Center in San Diego, Ca. She was born early due to pregnancy complications. I was diagnosed at having severe ecyampsia and pregnancy induced hypertension. My symptom were severe, yet I was continually told that things were ok. Anyways, Paige is now 2 years old and her father and I are dealing with food adversion and Hypersensitivity. I would love to seek out other parents who have experienced the same kind of difficulties. Is there anyone else out there who has experienced severe ecyampsia? Medical information is sketchy at best. My husband and I would like to have more children but frankly I am terrified that this may happen again. It has been a very frightening experience. I am so thankful that our daughter is doing so well as compared to other stories. Preemie children are so strong and so special. It is so amazing that a child so small and fragile could survive such a frightening experience. I hope that you are able to reply to this! I am looking forward to it!

Thanks,


Kerri Day


Hi Tommy:
My son John Logan Dixon Glenn ("Logan") was born on 07-05-94, at 26 weeks. He was due 10-09-94. Logan weighed 2 lbs, 4 oz and was 14 inches long, slightly larger than one of his older sister's Barbie dolls! I also had placental abruption at 6:15 am and was rushed to the hospital after losing lots of blood. Logan was born by emergency NC section and had an initial Apgar score of 0. Logan spent 10 1/2 weeks in NICU and finally came home on 09-14-94, at 4 lbs, 4 oz.


Mary Lynn Glenn
marylynn35@AOL.com


Hi Tommy:
Your dad has done a nice job on your story. We wish you good health and happiness. Our daughter Kaitlin was born February 27 just shy of 28 weeks gestational age. She weighed only 1lb 9oz. We don't know how things will turn out - but but it is comforting in a small sense to know that there are success stories we can pin our hopes to. Best of luck

Michael and Madeline


Katilin's Mom and Dad
finn_mike@bah.com


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