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| Name: | Jessica & Tony |
| E-mail address: | wothewoods913@aol.com |
| Comments: | We have a 3 year old survivor of RCDH. We found a problem when I was 31 wks preg. It was first told to us that he had a CCMAM, a ciyst in his rt lung. We were told he would live a day or two. At birth he barely made a sound, and I didn't even get to see him before they took him away. He flat lined 3x. Once he stabilized he had surgery at 5 days old. We were told he would be on a respirator for 3-4 mo. He was never on echmo. He pulled his respirator tubing out at 2 1/2 wks and breathed on his own. He got to make his big homecoming 31 days after h was born. He is an amazing boy. Today he has asthma and any chest cold can turn into pneumonia. But other than his scar, you would never know anything ever happened to him. For anyone in Ft Wayne, IN area needing help, look up Dr. David Smith. He was our pediatric surgeon, amazing guy!! And we delivered at Lutheran Hosp, they were amazing!! |
| Name: | Jackie |
| E-mail address: | crafty_j2000@yahoo.com |
| Comments: | need support. My grandson was born July 11 with diaphragmatic hernia. He is in hospital right now needing 3rd surgery. My daughter wants him to be in Childrens Hospital and they are refusing to send him to childrens who can help us. |
| Name: | nick and katherine |
| E-mail address: | purgatory2846@yahoo.com |
| Comments: | we have a three week old boy that was diagnosed with cdh.he has been on ecmo for two of those weeks.the first he had his surgery and progressed, after it was like he just kept getting worse.we found out that when on ecmo the lungs collapse since ecmo doese all the work.now they cannot get his lungs to fill with air and even the team of doctors are puzzled...has anyone had this problem...what was the result...sholud i be very concerned? |
| Name: | Fiona Coyne |
| E-mail address: | maz_and_errol@hotmail.com |
| Comments: | I found out when I was 16 weeks pregnant that my baby girl had a left sided diaphragmatic hernia. At first my husband and I had so much hope that she would be ok but as more tests were done the situation seemed much worse. The doctors told us that her stomach, intestines and part of the liver were in her chest cavity and that there was a thirty percent chance she would survive but then could face more complications such as cerebal palsy, mental retardation just to name a few. This information was all very scary and in the end we decided that we did not want our little girl to suffer a life of pain and we terminated at 20 weeks. Our little angel was born and died on the 24th February 2006 and we called her Georgia Madeleine. She looked so small and helpless and when she was born thankfully she did not stuggle to breathe. (The doctors told us this may happen)She looked so perfect like nothing was wrong. We got to spend time with her and hold her and we have lots of photos and momentos of her short life with us. This was the hardest decision we had to make and now I am feeling a lot of regret about it. Would she have made it? I will never know and now a terrible feeling of guilt that I never did give her that chance is with me all the time. To all other parents out there faced with the same decision please take your time in deciding what to do because once they are gone they can never come back. Fortunately we were able to give her a very special funeral service with all of her loving family there to farewell her into the arms of Jesus. I love my daughter so much and I pray all the time that God is keeping her safe and I know that he is. I live in Australia and would love to hear from anyone who is going through a tragedy like this. It may be able to help you and us to deal with what is happening in our lives. |
| Name: | goldie fraley |
| E-mail address: | goldiefraley@yahoo.com |
| Comments: | My daughter was born with Left Sided CDH. She is now 8 and has been a true miracle of God. She is amazing. No other medical issues after repair until now. I am wondering if anyone else is finding out the ECMO has affected their child's hips (coxa vara). I heard from our Dr. that children are starting to display problems with this. Anyone have any information??
Our story has been a wonderful happy one thus far since Jamie was repaired and recovered hypertension. Anyone want to share their story please write. |
| Name: | alice fairman |
| E-mail address: | fallenfeather1950@yahoo.com |
| Comments: | my grandson iNathan A. Stafford Jr.s coming to Shands for surgery on 10/19/05 he has hair lip and will get it fixed then .. I am so scared too. love nanny |
| Name: | kelly hosking |
| E-mail address: | emmatucker@hostmail.co.uk |
| Comments: | i read all your storys and all i did was cry from when i started to read them untill i finished in july 2003 my youngest son was born with cdh and i went all the way through my pregnancy having over 30 scans and still was not detected and to top it off i was 40 miles away from a hospital with a icu. i had a c-section waking up ready to see the the little miricle i had been carrying for 10 months to find out the were keeping him alive with a hand pump and i was not gonna be able to see him untill i was well to travel to the hospital were he was taken so all i can say to the mothers and fathers out the is be brave there is hope my son survived all that i know what your going through just be strong |
| Name: | Brandi Barragan |
| E-mail address: | brandi_n_barragan@yahoo.com |
| Comments: | On May 8, 2004 my daughter Rachel Marie Barragan was born with a right side congential diaphragmatic hernia. She was not able to stablize long enough for them to do ECMO. We had to make the hardest decision of our lives and take her off the respirator. No sugery could be done. Rachel died on May 9, 2004 in New Orleans, Louisiana at Tulane University Children's Hospital. |
| Name: | Mary |
| E-mail address: | queeni6134@msn.com |
| Comments: | Two weeks ago we lost our little angel to CDH and am glad that I have found information out about it through this website. We had no idea she was going to be born with complications. We miss her so much and am glad to find other people that have to deal with the same things that we had to. In honor of our little angel LIBERTY REIGN HICKS. We will miss you for all eternity. |
| Name: | Tara |
| E-mail address: | bluezoey1980@yahoo.com |
| Comments: | I am 23 years old and engaged to be married. I just found out that my baby boy has CDH. I am 18 weeks pregnant and very scared. I cry and cry and I feel very confused about what to do. The doctors say it isn't a chromosonal issue. I see the pediatrict surgeon on Monday at Albany Medical Center. I wish someone would e-mail me and give me some insight....I am afraid I am going to make the wrong decision. I don't think I can go through with termination. Help please.
Tara Albany |
| Name: | Carmelita |
| E-mail address: | carmelita@cuteandsingle.com |
| Homepage URL: | http://cuteandsingle.com |
| Comments: | You have quite an appealing website. |
| Name: | J. Michael Wilson |
| E-mail address: | ppihc@tds.net |
| Comments: | I am the father of Kristen Brooke Wilson, a 15 year old survivor of CDH. We love her with all of our heart and thank God continuously for his healing power and the skillful hands of all of her surgeons and support personnel. We have been truly blessed.
J. Michael Wilson |
| Name: | Joyce Wilson |
| E-mail address: | ppihc@tds.net |
| Comments: | Just now found this web page. What a blessing to read about all the miracles from God. We have a 15 year old daughter that is a survivor of this condition. She is such a fighter. Just had her last surgery last Wed. 12/11/02 at Vanderbilt in Nashville. She was transported by helicopter 5 hours after her birth from Oxford MS to Jackson MS to have immediate repair surgery. We were not given any hope for her without survery and very little with surgery. We were told that she was the worse case they had ever seen survive. To date she has had 1o surgeries, including 3 diaphragmatic hernia surgeries, 1 hiatal hernia surgery and 2 open nisson undoplications and 2 back surgeries for scoliosis- all stemming from her birth problems. We had no clue there was a problem before her birth. She was on 100% everything when she was born becauise she could do nothing on her own. I had to have an emergency c-section to have her. She was taken 200 miles away from me at 5 hours old.
Not knowing if I would ever get to hold her, love her or kiss her. Not a good feeling, as many of you already know. It's been 15 wonderful years for us - lots of problems and situations to face and overcome - but what a joy she is. She is such an inspiration to others. She sings solos at church, plays the clarinet, piano and loves all kinds of sports. Such amazing things she does, for someone who had a left lung the size of a half-dollar and the right lung was not much bigger. The doctors told us if anyone ever needs to see a miracle show them Brooke! I know God still reigns and rules over all things including the health of my 15 year old angel "Brooke". We have 2 older children, healthy no problems. This has been a very growing experience for us - we now value every breath we take and every day we live to enjoy. Sorry to ramble - just reading your experiences just made me live 15 years all over again. God Bless & Keep You ALL. |
| Name: | Jolene |
| E-mail address: | TrentNSaydsMama@aol.com |
| Comments: | Jessica-
I tried emailing u as I would LOVE to chat but ur email address does NOT work. I have a 2 1/2yr old cdh survivor. Email me anytime. huge hugz~Jolene-proud single mama of Saydie 4.9.00, LCDH, chronic lung disease, o2 18 1/2mos., asthma, pectus, GERD, g-tube/nisssan 8/8/02, button 9/23/02 doing okay...also proud single mama of Trent 4.19.98 my BIG man!! |
| Name: | Jessica Mayfield |
| E-mail address: | jessimay@aol.com |
| Comments: | I am 24weeks preganant and my baby has been diagnosed with diaphramatic hernia. I don't know what to expect or how to tell my 2yr old when the baby arrives. If any one has any advice or just needs an ear Please write me. I hope everyone has the best of luck and my prayers are with all of you During this trying time. |
| Name: | Michael Pitschka & Barbara Northway |
| E-mail address: | mbpitschka@hotmail.com |
| Comments: | Our daughter Andionna was born with a diaphragmatic hernia on the Sept. 16, 2002. she was placed on ECMO & is still waitng for surgery. I guess she's got alot of good results, yet there is still a few things that are causing concern. |
| Name: | Lori Smith |
| E-mail address: | helplori@hotmail.com |
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| Name: | Sylvie |
| E-mail address: | sylricjones@aol.com |
| Comments: | As I write this I am currently in Shands Hospital in Gainesville, Florida. My son also had a congential Diaphramatic Hernia. He had only his Intestines in his left lung cavity. He is 3 months old, and we are still in the hospital. Should be going home for the first time next week. Any of you who are being told that your baby has CDh please contact Dr. Kays at Shands. He's the best and has saved my son. You are more than welcomed to email me if you want. |
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| Name: | April Kerns |
| E-mail address: | Snowrose1230@aol.com |
| Comments: | My son was born June 19 2002 with CDH.We found out he had it when I was 19 wks pregnaut.We he was born we had found out that he was what they call bleeders so they werent able to put him on ecmo which was the only hope for him after he had his surgery and the high ventilator settings blew holes in his lungs.My son Malachi Eric Kerns passed away on July 16th of 2002.He was 3 days shy of a month old. |
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| E-mail address: | jonny@terrorkom.de |
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| Name: | Jill Harmon |
| E-mail address: | jillharmon28f@yahoo.com |
| Homepage URL: | http://the_evil_clowns.tripod.com |
| Comments: | Thanks for the help.
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| Name: | Katrina Frush |
| E-mail address: | Sunflower_40_60@HOTMAIL.COM |
| Comments: | A mother of three allready,I was expecting a baby boy in January, to our suprise I went into labor on Christmas Eve morning at 6:30, that evening at 6:38 our son Brandon Christian was born. He wasn't very responsive but the doctors thought it was just from the pain med. I was given.. any way they said he was fine[after working with him for 20 min.] my husband and I held him, our familys held him,still no crying and he was breathing alittle funny but being tierd and drugged up,i thought nothing of it. The nurse came in to give him his bath and thats when they realized something was wrong, the emergancy room was completely empety[which doesnt ever happen according to the nurse]so the intier emergancy room staff was there to help him they almost lost him once but were able to revive him , he was taken imediatly to Lutheran Hosp. in Fort Wayne, by the time they arrived [ 12:50 am ] he had passed away, so our little Christmas baby spent his first Christmas in Heaven with his grandparents, I went to Lutheran Hosp. that night/morning and held him and told him i love him... the hardest part was telling my other childeren on Christmas morning that their baby brother was in heaven, I have a seven year old boy who was so looking forword to having a baby brother and my older two were too. I have a few words of addvice for any one expecting that hasn't given birth yet, the pain medicine they give you now days makes you very sleepy, I DIDNT KNOW THIS, if i wasn't so out of it[ groggy ] i think i might have realized something was wrong sooner...any way Brandon is safe and happy in Heaven waitng for us, there was a nurse at Lutheran who went out to her car and used her own digital camera and took some beautifull pictures of him for us, i cant thank her enouph, i call them my window to heave... We love you Brandon!!! |
| Name: | Dru |
| E-mail address: | dru@big-amateur-tit.com |
| Homepage URL: | http://www.big-amateur-tit.com |
| Comments: | Thanks a lot 4 having me in! I LOVE YOU guys! |
| Name: | Llamay González |
| E-mail address: | gonqui99@yahoo.com |
| Comments: | My baby boy was born with CDH, but we did not know till our baby was born. Supposely, my baby angel was going to have problems with a kidney which has cysts. His name was Abid Eriel and he only lived for 26 hours. It has been very hard for me due to the fact that he was my first baby. My heart ha such a big ache that does not want to go away. It has been a big support being part of this organization.
Llamay-mom of baby angel Abid Eriel born January 8, 2002-Jan.9, 2002 |
| Name: | VICKIE HANSHAW |
| E-mail address: | MIDNIGHTRUNNER24@YAHOO.COM |
| Comments: | HELLO,MY LITTLE BOY JACOB WAS BORN ON DEC,31 98 HE WAS DIAGNOSED WITH A CDH WHEN I WAS 22 WEEKS PREGNANT.I WAS DEVASTATED WITH EVERYTHING THAT I FOUND OUT I SIT AND CRIED FOR DAYS.EVERYTHING WAS HEARTBREAKING I REALLY FEEL FOR EVERYONE THAT HAS TO GO THROUGH THIS TRAGIC ALONE OR WITH SOMEONE I WAS A SINGLE PARENT AND VERY SCARED.I HAD ALREADY HAD A 2 YEAR OLD AT THE TIME OF MY SON"S BIRTH. AND I WAS FORCED TO GIVE PARENTAL RIGHTS AWAY BECOUSE I WASN"T ABLE TO CARE FOR BOTH CHILDREN EVERYTHING WAS SO DEPRESSING FOR ME I HAD TO GIVE JACOB 24 HOUR CARE AROUND THE CLOCK,AND THAT WAS HARD ON MY OTHER LITTLE BOY.
THINGS THAT HAPPEN LIKE THAT ARE UNEXPECTED AND YOU NEVER KNOW WHAT YOUR GONNA DO UNTIL IT HAPPENS I FEEL REAL GUILTY FOR DOING WHAT I DID BUT HE"S IN A BETTER PLACE.HE WAS IN THE HOSPITAL FOR THE FIRST YEAR OF HIS LIFE.I WAS THERER FOR THE WHOLE THING.I TOOK SPECIAL TRAINING SO THAT I COULD CARE FOR HIM PROPERLY I WAS THERE ALONE WITH NO HELP.THE DAY CAME THAT HE COULD COME HOME I WAS VERY EXCITED TO HAVE MY LITTLE ONE TO COME HOME.HE WAS THERE AT HOME FOR 3 WEEKS.HE WAS STILL ON A HEART MONITOR AND OXYGEN,RESPORATORAND HE HAD A FEEDING TUBE.IT WAS THEN HE HAD GOT PNEMONIA.HE WAS ADMITED TO THE HOSPITAL ONCE AGAIN.WELL THAT WAS SO DEPRESSING TO SEE HIM IN THERE AND TO LEAVE MY 2 YEAR OLD AGAIN.I WAS SO SCARED.JACOB WAS TO THE WORSE WHEN HE WENT DOWN HILL I WENT DOWN HILL.MONTHS PAST BYE AGAIN AND ALL I COULD THINK ABOUT WAS MY 2 YEAR OLD HE WAS AT THE POINT HE WAS CALLING MY BABYSITTER MOMMY.THEN THAT DRAWED THE POINT.I HAD TO GET OUT OF THERE.I HAD TO GO TO MY OLDEST.I HAD TO REST BEFORE I TOOK A NERVOUSE BREAKDOWN.THEN I ABANDONED JACOB FOR 2 WEEKS I CALLED TO SEE ABOUT HIM BUT NEVER DID RETURN.I REALLY HAVE HAD SOME SEVERE DEPRESSION,THEN IT TOOK PLACE AT THE COURTHOUSE THEY WAS GONNA GET ME FOR ABANDOMENT.THEY TOLD ME TO GIVE MY RIGHTS UP OR GO TO JAIL. I DID NOT WANNA LOOSE EITHER BUT I HAD TO CHOOSE,AND THAT I DID.UNTIL THIS DAY IT STILL HURTS,I AM A GOOD MOTHER IT MAY NOT SOUND IT BUT IT TAKES A GOOD MOTHER TO MAKE THE BEST DECISIONS.I FINALLY RELIZE THAT I COULDN"T TAKE CARE OF BOTH OF THEM ALONE.SO ALL OF YOU SINGLE PARENTS OUT THERE DON"T BEAT YOURSELF UP OVER SOMETHING YOU CAN NOT CONTROL.FACE THE FACTS AND MAKE THE RIGHT CHOICE,NOW IF BOTH OF MY BABY"S WERE OKAY I WOULD HAVE NEVER DONE THAT BECOUSE I BELEIVE THAT IF YOU CAN LIE DOWN AND MAKE THEM CARE FOR THEM.SO PLEASE BE SURE THAT ITS WHAT YOU WANT.AND THE BEST OF LUCK TO EVERYONE THAT FACES THAT ROAD.MAY GOD BLESS YOU. |
| Name: | vickie |
| E-mail address: | midnightrunner24@yahoo.com |
| Comments: | HELLO,MY LITTLE BOY HAS CONGENTIAL DIAPHRAMATIC HURNIA I FOUND OUT WHEN I WAS 22 WEEKS PREGNANT I WAS SO DEVASTATED.MY LITTLE BOY WAS BORN PREMATURE I HAD HIM WHEN I WAS SIX MONTHS PREGNANT,HE HAD 4 SURGURIES HE ALSO HAS BEEN ON A RESPERATOR TO HELP HIM BREATH, THE COMPLICATIONS WITH THE CDH PUSHED HIS HEART TO THE RIGHT SIDE OF HIS CHEST AND ALL OF THE ENTESTINES TO THE CHEST HE WAS IN THE HOSTPITAL FOR THE FIRST YEAR OF HIS LIFE.I AM VERY THANKFUL THAT MY SON JACOB IS LIVING HE IS A MIRACLE FROM GOD AND I SUPPORT EVERYONE THAT HAS GONE THROUGH THE TRAGIC. |
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| Name: | Kerry Boehm |
| E-mail address: | jkboehm@earthlink.net |
| Comments: | I am a parent educator for the Lee's Summit school district in Missouri. A family referred me to your website for information. I visit this family tomorrow and thank you for the easy to read information and insight. I hope that I can also be a support to this family, you already have. Thank you |
| Name: | Annette Heard |
| E-mail address: | net933@aol.com |
| Comments: | My daughter is 18years old and pregnant with a child with this condition. She is going to Shands Hospital in Gainesville on the 10th of March to be induced into labor. I feel so helpless. She is very scared and upset. She will have to be there alone sometimes. Please response. I am trying to find Dr. Kay's kid website support. |
| Name: | Holly Bost |
| E-mail address: | hollybost@msn.com |
| Homepage URL: | http://hollybost@msn.com |
| Comments: | I have a 13 month old daughter named Kailyn who was born on Jan. 3,2001 with an undiagnosed left-sided CDH. She was born a fighter (like all these babies are) and is doing remarkably well. She is a perfectly normal toddler with no developmental delays or feeding problems. I thank all the wonderful people at Children's and Mercy Hospitals in Cincinnati for their compasssion and expertise. Since Kailyn was our first baby we are concerned about the possibility of having another baby with a serious birth defect in the future. If anybody has any information or statistics on this I would really appreciate it. Thanks for this wonderful website and for all the people who have told the stories of their little angel. |
| Name: | Diana |
| E-mail address: | gadgets@direct.ca |
| Comments: | Hi. Until the birth of my daughter (Dec 2001), I have never heard of CDH. I am surprised to read of how many people have had babies with CDH. Your website is a great support for those families of infants/children with CDH. My little girl was diagnosed at birth and had her surgery the next day and every day I am so thankful that she is doing very well. |
| Name: | susi |
| E-mail address: | zzuuzz@gmx.de |
| Homepage URL: | http://www.brutal-anal.net |
| Comments: | The website has a tremendous Potential.It gives an enjoy to the visitors
I can find many details. Congratulations on a job well done. |
| Name: | ralf |
| E-mail address: | ralf@mail.tt |
| Homepage URL: | http://www.1a-geheimtips.de/z-english-cj.htm |
| Comments: | Ich glaube, ich habe mich früher schonmal eingetragen, aber egal, dann tue ich es eben nochmal, denn ich besuche eure seite ja schließlich regelmäßig wegen des gute contens.
gut gelungen, echt ! |
| Name: | Laura, michelle and louisa |
| E-mail address: | partyin1@hotmail.com |
| Comments: | Hi again! im really sorry i thought this was a different website! im sorry if ive offended ne1 in the site! we support you and your families. we are sorry 2 hear about your losses.
Please forgive us. |
| Name: | Laura, michelle and louisa |
| E-mail address: | partyin1@hotmail.com |
| Comments: | Hi every1, i am a cherub 2! does ne1 want 2 b my cherub friend? Michelle and Louisa say hi 2! they want 2 b cherubs as well! wot do u think? matt is sat next to me! he says hi 2 the cherubs! michelle's a huffalump.she wants 2 know if there r ne huffalumps out there who will b her friend! write back 2 me very soon pleeeezzzzeee.
Love Cherub friends xxxxxxxx |
| Name: | Evelyn Grigsby |
| E-mail address: | evelyn.grigsby@kctcs.net |
| Comments: | I was just searching through the net for diaphragmatic hernia websites and happened upon "CHERUBS". The subject is of great interest to me since my son Adam is a survivor of congenital diaphragmatic hernia. He is now 15 years old and extremely healthy despite a subsequent battle with a congenital heart problem as well! |
| Name: | christina rosales |
| E-mail address: | rosales2001@e-garfield.com |
| Comments: | hello my name is christina. 2 years ago my son was born with a diophragmatic hernia. and let me tell you.It was very hard to see this happening to my baby. they went in and repaired it when he was 2 days old. I can never express the pain I felt and how I blamed myself. and how everyday I prayed to god to let him make it. He was in the hospital for 2 months of his life.and I remeber when I held him for the first time he was 1 month old.and I wish I would have know about this web site. I think It"s really great that there is this web site Because and can help educate parents such as myself....
christina rosales |
| Name: | Puti and Patrick Toi |
| E-mail address: | toiwhanau@xtra.co.nz |
| Comments: | kia Ora, Our fifth child was born at home in a planned waterbirth. He was 11 lbs at birth and seemed extremely healthy. At 4 months of age he had trouble breathing and during a routine examination was found to have CDH. His left lung was underdeveloped and squashed in the left cavity with his bowel, spleen and a kidney. We were rushed to Waikato Hospital where surgeons hoped to repair the hernia,but had to wait another 4 weeks until they could perform his operation. We were all in shock and very scared,I would watch him sleeping at night and pray that he would be o.k. It made me realise what was really important in life and how precious our children are.I'm so very happy to say that he is now almost 8 months old and seems to be doing really well. He is truly a blessing and a joy for the whole family.
Our thoughts go out to all of you affected by CDH. |
| Name: | Tammy Holcomb |
| E-mail address: | tomtam@radicus.net |
| Comments: | I am 21 weeks pregnant and just learned last week that our unborn little boy has a diaphragmatic hernia. To say the least, we were shocked. I am just to trying get as much information that I can. (In terms that I can understand!)We do have a healthy 2 year old that keeps us very busy but it doesn't make this time any easier. It is amazing how much I love this little boy already! I am doing my best to keep my faith and believe that God will take care of us. It still doesn't take away the pain. I do not want this child to suffer but part of me is selfish and does not want to let him go. I guess that sounds terrible. I would love to hear from any parent who is experiencing the same things. Thanks for such a wonderful website! |
| Name: | Tammy Holcomb |
| E-mail address: | tomtam@radicus.net |
| Comments: | I am 21 weeks pregnant and just learned last week that our unborn little boy has a diaphragmatic hernia. To say the least, we were shocked. I am just to trying get as much information that I can. (In terms that I can understand!) |
| Name: | Nancy Rogers |
| E-mail address: | 59fire@msn.com |
| Comments: | Our baby Gwen went to heaven 3/6/97. She was 16 months old.
She taught us so much in her short life. My mother wrote a very touching poem about her. |
| Name: | Arlissa Robinson |
| E-mail address: | arlie1983@hotmail.com |
| Comments: | Logan Lee Wagner is my little cousin, I am doing a reasearch paper on CDH. If anyone has any good information and wouldn't mind sending it my way....please do.
My email address is listed above. Please also include where you got the information i.e. Wepage I would need a web address. Thanx! |
| Name: | Byron Anson |
| E-mail address: | byron_anson@yahoo.com |
| Comments: | just looking at the site, I am a 3rd year medical student and will be assisting in the repair of a d-hernia tomorrow. |
| Name: | Becky Salinas |
| E-mail address: | asalinas@blazenet.net |
| Comments: | Hello, my name is Becky and I am a mother of two wonderful boys...Derrick (4 years) and Braedon (2 years). Braedon is my little miracle child. He was born on April 16, 1999 and surprise, surprise, he had cdh. Thank goodness Braedon is a very strong little boy because he has survived everything god has handed him so far. Braedon was given a 5% chance of surviving that first day, what a fighter. He had to wait 3 weeks to have his hernia repaired. While he was on ECMO he had a Bleed in his brain, which caused hydrocephalus, so now he has a VP Shunt. He had to have a tracheostomy because he was vent dependent and had to have a Nisson/G-tube because of severe reflux. He spent 360 days in Johns Hopkins Hospital and Mt. Washington Rehab. He finally came home to us 5 days before his first birthday.
He has come so far, and will still have a long way to go, but I think the key is to take one day at a time. Braedon is now 2 1/2 years old. He has been oxygen and ventilator free for 2 months now. He eats a little by mouth but still takes all liquids and meds through his g-tube. Last fall he started having seizures, so we deal with them every couple of months. He is very much developmentally delayed but we continue to make progress. He is close to having his trach removed, but we need to have one more surgery before that can take place. Other than all of the unhealthyness about Braedon, did I mention that he is the happiest child I have ever known. He is my rock and a constant reminder that GOD is good, that out of every bad and frustrating situation can come something so spectacular . I would love to hear from anyone who is interested in knowing more about my Braedon and I am always looking to be inspired by all the other miracle children and their families. Thank-you for listening. GOD BLESS!! |
| Name: | Lucy Honsinger |
| E-mail address: | luglow@yahoo.com |
| Homepage URL: | http://www.darrenhonsinger.com |
| Comments: | Hi there i have left a message before...On July 11th at 351 in the am i gave birth to a beautiful baby boy Darren..he was 5 weeks early but was big he weighed 6lbs 12onzs 23inches long..on July 17th he passed away in the night...thank god we were all there..my husband and i held him until he died..as my father says he lived a whole lifetime in 6days..he was such a beautiful little boy..but he gave us the 6 most beautiful days ever..we had to make the decision to take him of the machines..it was not a easy one! The hardest part was the fact that I am 23years old and i was planning a funeral for my baby boy! Just thought that i would share my story...I found out at 24 weeks gestation that Darren had cdh..please feel free to get in touch with me via email !!!!!
Lucy Honsinger |
| Name: | Peggy Harris |
| E-mail address: | pegharris@qwest.net |
| Comments: | We were just told our child has CDH. They are sending us to a specialist tomorrow. I am so scared. I waited 4 years to conceive her and spent 60K in fertility treatments. This is my only chance of ever having a child. We only hope that it is not severe. |
| Name: | Lucy Honsinger |
| E-mail address: | luglow@yahoo.com |
| Comments: | Hi there..i have signed already once but i thought that i
could update..On July 11th at 351am i gave birth to a beautiful little boy we called Darren...He faught very hard but there was to many complications and to many odds against the little guy and he passed away lastnight July 17th at 1136pm..i hope no parent especially first time parents like my husband and i had to make the decision that we had to make for our son! We had to call it quits for him and let him go...God bless these little angels! Lucy Honsinger |
| Name: | Lucy Honsinger |
| E-mail address: | luglow@yahoo.com |
| Comments: | I am so very happy to see this web page..my husband and i
are expecting our first baby in 4 weeks and found out at 24 weeks gestation that our son has CDH. I thanks everyone who has contributed to this site. It has helped us tremndously!!! Lucy |
| Name: | Karen Van Koeverden |
| E-mail address: | rkvk@xtra.co.nz |
| Homepage URL: | http://books.dreambook.com/cherubsguestbook/.sign.html |
| Name: | Carrie Carty |
| E-mail address: | logansangel@hotmail.com |
| Homepage URL: | http://communities.msn.com/GOLDENFRIENDSHIPCAFE&naventryid=168 |
| Comments: | I love this site. I can't wait to be a part of it, and
share the story of my son with all of you. |
| Name: | julie younce |
| E-mail address: | ytweety417@aol.com |
| Homepage URL: | http://books.dreambook.com/cherubsguestbook/cherubsguestbook.sign.html |
| Comments: | hi my names julie. my son aaron was born on july 6, 1999
with a left-sided cdh.we spent 3 months in the hospital.once we were home we found cherubs.it was such a great help to us.so we wanted to say thank you.THANK YOU! aaron is now 20 months old , he still has some feeding problems but is overall doing well.if i can help any one please feel free to e-mail me.thanks again |
| Name: | Jessyca White |
| E-mail address: | WCSHERRYataol@.com |
| Homepage URL: | http://AOL.com |
| Comments: | Dear Cherubs,
I'm writing you on behalf of my mother Kimberly Ann White and brother Matthew White/Perez. My mother was a big fan of your Cherubs Club because my brother Matthew was born with a diaphragmatic hernia. Well he is know 2-years old and doing fine, but know a hole lot of stress is about to be put on Matthew and her 6 other children. On Sunday Morning my mother was found dead in her sleep at 9:30 in the morning. I tell you this not to fell sorry for me just to tell the others about my loss as well as to tell the people that knew my mother and my brother Matthew just that they will no longer be in touch because of her death, But me her 15-year old daughter will try and keep in touch and I thank the peolpe that know my mother and that keep her happy while she was alive, I apprecite every thing!! |
| Name: | Lynn Miller |
| E-mail address: | crystal4@accessus.net |
| Homepage URL: | http://books.dreambook.com/cherubsguestbook/cherubsguestbook.sign.html |
| Comments: | My mother gave me an article today out of Family Circle
Magazine about a CDH mother named Beth Seyda and I thought I would check out the Cherubs website. I didn't know what to expect, but I have spent the last hour and a half reading each and every one of the guestbook signers with tears in my eyes. It brought it all back for me. In August, 1990, my son was diagnosed with right-sided CDH (I was five months pregnant). The doctor did the routine measuring of the stomach and my stomach grew too much that month, so an ultrasound was done. They couldn't find his stomach. The next day we went to St. Louis where another ultrasound was performed and immediately met with a team of doctors, who told us all about diaphragmatic hernias. Since his hole was fairly large, they only gave him a 5-10% chance of survival (which I immediately translated into a 90-95% chance of dying). To tell you the truth, I really don't remember much about the rest of the pregnancy. Just a sickening feeling, and the "thinking about it" every minute. I felt him move and kick in my stomach, and I wanted to keep him there forever. He was safe there. Austin James Miller was born on October 18, 1990, at Jewish Hospital in St. Louis. He was six weeks premature, but still weighed five pounds, which was pretty good sized. Immediately, he was taken to Children's Hospital nextdoor. When he was 45-minutes old, he underwent the repair surgery. Since he was born c-section and was in another hospital, I didn't see him until he was three days old. (That was tough - thank heaven for Poloroid cameras.) Austin is now 10-1/2 years old, in the 4th grade, and last Saturday made the first touchdown in his first flag football game! He is one of the easiest going people I have ever met, and he collects absolutely everything. He was slow with everything at first - walking, talking, and school is a struggle for him, but we work on it every day, and last semester for the first time he was an Academic All- Star. Austin seems to have an unusual tolerance of pain, and I wonder if it somehow goes back to what he went through when he was born. For instance, a couple summers ago, he and his brother were playing outside and Austin got hit in the head with a rock, and needed stitches. His brother came screaming in the house and was crying to tell me to come outside. There Austin was, standing there bleeding all over the place, and never cried - his brother was hysterical. (Austin didn't want to get blood on the carpet.) I often wonder how we were so lucky with him. His lungs had developed for the most part during pregnancy, but were deflated when he was born, because his intestines crawled up the hole. He was breach when he was born, and the doctors think maybe the "gravity thing" helped hold his intestines and organs down where they needed to be enough for the lungs to develop. That seems to be the most important thing, as the lungs are one of the last things to develop. He loves to hear me tell him the story of how he was born - to him the more details the better, and I stare at his huge scar sometimes, like when he's swimming, and I wonder how we all were so lucky. My heart goes out to all of the parents, grandparents, and relatives who have to go through this. I wish I could do something to help you. It's not fair and it seems like a kick in the head when you have to face it, but my mother told me when we were diagnosed, that God doesn't give you anything you can't handle, and handle it you will. Just please know that you're not alone. Lynn Miller |
| Name: | Elizabeth Livingston |
| E-mail address: | tsl0899@aol.com |
| Homepage URL: | http://www.aol.com |
| Comments: | We lost our son three years ago this month. He was
diagnosed at Methodist Hosp. (Mayo Clinic) Rochester, MN at 20 wks gestation. His CDH was severe and "incompatible with life". That was the most difficult decision we have ever had to make. My husband is a pediatric neurologist epileptologist so he had actually taken care of CDH kids during his pediatric residency; he knew immediately that the prognosis was not good. We now have a healthy 17 mo old son, thanks be to God. If I can help anyone in any way I welcome your questions: tsl0899@aol.com May the Lord bless you all. |
| Name: | Brenda Pulfrey and Brandon |
| E-mail address: | bpulfrey@hotmail.com |
| Homepage URL: | http://books.dreambook.com/cherubsguestbook/cherubsguestbook.sign.html |
| Comments: | Thanks for having this web site. I am very happy to find
some information on my son's diagnosis. |
| Name: | Jamie L. Berry |
| E-mail address: | foreveramother@hotmail.com |
| Homepage URL: | http://books.dreambook.com.cherubsguestbook/cherubsguestbook.sign.html |
| Comments: | I have found your site to be very informative and creative.
May God continue to bless you and all that you are doing for the world. |
| Name: | Kristi Anguish |
| E-mail address: | kanguish@troopers.state.ny.us |
| Homepage URL: | http://books.dreambook.com/cherubsguestbook/cherubsguestbook.sign.html |
| Comments: | I am 22 weeks pregnant and found out two weeks ago, that our
baby son has a left sided CDH. We will be delivering in Boston Childrens Hospital. I would love to talk to anyone who can share any information. Thanks |
| Name: | Jean Benge |
| E-mail address: | Daddysgirlfriend@aol.com |
| Homepage URL: | http://books.dreambook.com |
| Comments: | My daughter Christian Faith Benge was diagnosed w/CDH at 19
weeks gestation. By the mercy of God, she is alive and the only known survivor to do ECMO twice and live. I would like to tell everyone that GOD still does miracles. All things remain possible with him and nothing is to big for him. Faith is the substance of things hoped for, the evidence of things not seen. My prayers remain with everyone that has suffered such a trial with a child. God is faithful to make a way of escape for any trial. |
| Name: | Monika |
| E-mail address: | wentzel@firemail.de |
| Homepage URL: | http://home.t-online.de/home/J.Wentzel/Kein |
| Comments: | Hallo,
hier schreibt euch Monika. Auch ich habe ein AS Kind, Silke ist 18 Jahre alt. Dieses Jahr ist Silke aus der Schule gekommen und geht jetzt in einer Fördergruppe. Im November muss sie ins Krankenhaus, weil die Mandeln entfernt werden müssen, davor habe ich große Angst. Ich hoffe es geht alles glatt. Dem Krankenhausarzt habe ich alle Unterlagen über das AS-Syndrom zugeschickt, denn die Ärzte in Deutschland kennen das AS Syndrom nicht. Ich würde mich freuen, wenn sich jemand meine Site ansehen und sich im Gästebuch eintragen würde. Leider kann ich kein Englisch. Viele liebe Grüße von Monika u. Silke |
| Name: | cassandra adkins |
| E-mail address: | rriley@netscope.net |
| Homepage URL: | http://altavistalive.com |
| Comments: | i would like to go on your web site to find out more about
right side cdh my daughter was just born with it on july 25 2000 please tell me how to get to your web site thank you |
| Name: | Mender |
| E-mail address: | mender1too@hotmail.com |
| Homepage URL: | http://www.menders.isgreat.net |
| Comments: | BEautiful site...May God continue to bless you with his
peace.God Bless you always and all you are doing. |
| Name: | Andrea Dryburgh |
| E-mail address: | andrea@iweb.net.au |
| Homepage URL: | http://books.dreambook.com/cherubsguestbook/cherubsguestbook.sign.html |
| Comments: | Thank you for a wonderful site, if only i had known about
it 3 yrs ago. We have an energetic,healthy normal 3 yr old following undiagnosed CDH. A day doesn't go by without realising how very lucky we are to have our beautiful daughter. My heart and thoughts go to everyone who has been affected by CDH. |
| Name: | Pauline Scherrenberg |
| E-mail address: | pauline.scherrenberg@adm.monash.edu.au |
| Homepage URL: | http://books.dreambook.com.cherubsguestbook/cherubsguestbook.sign.html |
| Comments: | Thanks to all the people who gave so much support to my
sister, when she was going through such a difficult time having her first child who was diagnosed during pregnancy as CDH. My sister really needed the support of others who had been through similar experiences, and it helped her a lot. It is a wonderful website and very informative. Keep up the great work!! Pauline |
| Name: | Pattty Cook |
| E-mail address: | Patacake67@AOL.COM |
| Comments: | Thanks to your web site I learned a great deal about
diapragmatic hernias. That was very helpful in preparing |
| Name: | Donna Crowley |
| E-mail address: | Dcrowley@graceschool.org |
| Comments: | We are expecting a baby boy in September who was diagnosed
with CDH at 18 weeks. I have learned a lot from this website and we feel very hopeful about our baby's future! Thank you for all of the information you provide for us. |
| Name: | Margaret Green |
| E-mail address: | greenpeg@aol.com |
| Comments: | Our granddaughter has been diagnosed in utereo (23 weeks)
with this condition. This web site has been very helpful as we try to grasp the extent of this condition- and not drive her parents crazy with questions. This type of information would have been so helpful when we dealt with the premature birth of two of our children. Thank you for all the hard work and dedication that has gone into making the support group possible. Peggy Green |
| Name: | marty and lori mccants |
| E-mail address: | lam0620@aol.com |
| Comments: | our son, ian, was born jan. 19, 2000 with an undetected
cdh. he was on ecmo for 10 days and had a pretty tough time for awhile. he is now a happy, healthy 5.5 month old. |
| Name: | raymond & michele keating |
| E-mail address: | www.austarnet.keating.com.au |
| Comments: | we would love to make contact with other non-surviving
members in australia. we lost our only son rowan james keating on 1st june 1999 just 19 hours after he was born. |
| Name: | Ken Lance |
| E-mail address: | kenlance@mindspring.com |
| Comments: | Thanks for a great website! We found out yesterday (7/6/00)
about our baby having CDH. It is about 17 weeks. It is devistating. I'm so glad that there is support and information available for this. Thank you, Ken Lance |
| Name: | Ken Lance |
| E-mail address: | kenlance@mindspring.com |
| Comments: | Thanks for a great website! We found out yesterday
(7/6/00) about our baby having CDH. It is about 17 weeks. It is devistating. I'm so glad that there is support and information available for this. Thank you, Ken Lance |
| Name: | Tracey Oliva |
| E-mail address: | to2@staffs.ac.uk |
| Comments: | Hi, just an update on Davids progress, he is now 15 months
old and is developing as any other 'normal' child. David had a left sided cdh and was on ECMO for 10 days pre opp. The consultants are all pleased with his progress. My love and best regards go out to all the peolpe who are parents and relatives of these truly remarkable little fighters. Good luck. |
| Name: | Joseph and Amy Kibler |
| E-mail address: | jfkibler@aol.com and ackibler@aol.com |
| Comments: | We would love to hear from someone who has a baby with a
right sided CDH and how they are doing. Does anyone have a CDH baby that is now older? How are they doing? Thank you. |
| Name: | Natasha Peterson |
| Comments: | I am a parent of CDH son, when I found out at 19 weeks I
was divastated I thought he was the only one with this condition until I meet some wonderful people at USCF. My son is now 9 months-old and doing find, I thank GOD everyday for my miracle. |
| Name: | Jane Stockwell |
| E-mail address: | jstockwell@cbrichardellis.com |
| Comments: | Our daughter Raquel Marie Stockwell, born April 27th, 2000 -
doing great at Huntington Memorial - soon to come home! ECMO baby #532 |
| Name: | Wendy Stewart |
| E-mail address: | wtstewartnz@Hotmail.com |
| Comments: | I found your site very informative.My son is now a teenager
thanks to the skill of a New Zealand paediatric surgeon, Mr Percy Pease, and numerous other dedicated medical professionals. My advice to any parent of a child with health problems such as CDH is..keep a detailed diary or journal.It helps to write everything down. |
| Name: | Dave Cutting |
| E-mail address: | dcg11111@cs.com |
| Comments: | I visited my 4 month old grandniece, for the first time, on
Saturday, 6/24/2000. Her parents are doing a terrific job raising her, and I am certain that their care, along with Divine help, will ensure a wonderful future for a beautiful, healthy child of God. |
| Name: | Freedom Green |
| E-mail address: | fgrissom@ausitn.rr.com |
| Comments: | My husband and I just found out yesterday ( 6/26/2000) with
our first ultrasound that our baby girl has Diaphragmatic Hernia. Any suggestions on doctors or readings would be greatly appriciated! signed Mr. & Mrs. Joesph Green of Round Rock, Texas |
| Name: | Nikki Hodson |
| E-mail address: | nik.daz@ihug.co.nz |
| Homepage URL: | http://members.xoom.com/_XOOM/waltncindy/rebecca.html |
| Comments: | My first daughter Rebecca had CDH, she died 18 January 1999
aged 33 days. I am so proud to have had her, she was so sick, and was never really stable. I love and miss her so much, she was so beautiful. I live in New Zealand, and would love be contact with other NZ mums who have been through this. And for those elsewhere feel free to contact me through e-mail. I have belonged to Cherubs (non-suvivor list) since February last year, it has helped me through the thoughest time of my life. Thanks. |
| Name: | Teresia Wilson |
| E-mail address: | Teresia_Wilson@Juno.com |
| Comments: | Hello!
I am so glad to finally have the chance to get to this web-site. I am the blessed mother of two DH babies. I'm so excited to read all that is listed. Teresia |
| Name: | M. Saes |
| E-mail address: | marjosaes.hetnet.nl |
| Comments: | we are also de lucky parents of a survivor.
we wisch you all the best luck whit you're child . |
| Name: | Steve & Lori Plank |
| E-mail address: | www. Slaaap 5. com |
| Comments: | In 1994 my husband and I lost a baby to cdh.We would love to join your website and our interested in any research that's been done.
Thankyou. |
| Name: | Mary Edmonds |
| E-mail address: | Whiddyisland@aol |
| Comments: | I lost a baby to diaphragmatic hernia in 1974. Your Q & A
pages was wonderful in eliminating some of the guilt that I have carried for years. Thank you |
| Name: | maranda norton |
| E-mail address: | kayla2500@aol.com |
| Comments: | my daughter dies on february 5,2000. she had diaphragmatic
hernia and she only lived 37 minutes. she had no lungs at all . it is very hard to get through. i hope the best for you all. |
| Name: | Jolene Halbeisen |
| E-mail address: | JJTSH@about.com |
| Comments: | I am a proud mother of a two month old little girl named
Saydie Alexsandra Elayne. She was diagnosed w/ this condition when I was only 20 weeks along. She has been a fighter since birth! She came home from the hospital after a 28 day stay. She continues to be oxygen dependant!! Would love to talk to anyone who has a child w/ a similiar condition. Thank you! |
| Name: | Nancy & Alex Uribe |
| E-mail address: | URIBE-N@msn.com |
| Comments: | I signed the book about 1 month ago. I recently changed by
E-mail address. I have a 5 year old boy with a CDH. He has had various surgeries. I would like to know if there are any new procedures available for this condition ? He is oxygen dependent at all times. Has a G-tube. But the good part that he started eating by mouth. I would like to talk with people who are still going thru this problems with older children. Thank you. :) |
| Name: | Laura L Ganshow |
| E-mail address: | lauraopp@hotmail.com |
| Comments: | Sorry, previous message has wrong e-mail address. |
| Name: | Laura L Ganshow |
| E-mail address: | laura@hotmail.com |
| Comments: | I am six months pregnant and have out our little girl has a
diaphragmatic hernia. If you have any advice please e-mail me. It's nice to talk to parents who have gone through this same situation. |
| Name: | Samuel James Rossiter |
| E-mail address: | rossiters@dennithorne.fsnet.co.uk |
| Comments: | Sam is now eight months,he was born in October with an
undiagnosed diaphragmatic hernia and after a lot of tears and prayers, Sam had a fundoplication and now has a mickey apart from feeding problems he's doing fine. |
| Name: | J. Keck |
| E-mail address: | dkl@semo.net |
| Comments: | We lost our first child (a son) in February, 1996 to a
genetic condition described as "lethal multiple pterygium syndrome." A severe left-sided diaphragmatic hernia was diagnosed in utero at 25 weeks. In utero intervention was unsuccessful due to a multitude of other problems associated with the genetic condition. We are now the proud parents of a two year old daughter, who was also born with a milder case of the same condition, along with a left-sided diaphragmatic hernia repaired shortly after birth. She also suffers from severe congenital scoliosis and kyphosis. |
| Name: | Kelli McGarvey |
| E-mail address: | Poohluvr98@aol.com |
| Comments: | I am a 19 year old survivor of CDH, just recently I have
become interested in what really happened to me the day of my birth. My mother and father have always told me, because of having a scar that reaches half way across my abdomen, that I was a miracle from God. I have grown up knowing that I was not supposed to live, they gave my mother and father a 2% chance that I would even survive the transport to St.Louis Children's hospital. THis was 1980, and in eutero surgery was unheard of, and detection before birth was not there. I have learned a great deal through your stories. I do wish that I could understand why and how this happens more explicitly. If it would be possible, for me to abtain more concrete information, I would appreciate that greatly. |
| Name: | Wendy Watson |
| E-mail address: | Smokepod@aol.com |
| Comments: | Hello im writing about my daughter Kyanni who was born with
cdh. She is a twin and her sister did not have it . Kyanni was in the hostipal for 111 days . She is now 2years and 10 months and is doing great she is having feeding problems and is still small for her age. she had a rough start in life and she is doing great im so glad for cherubs i thought we were the only ones going through this. thanks so much i wish that the doctors or nurse would tell the parents of kids with cdh about your site because it really does help i needed it 2 years ago but im glad i found it now thanks sooo much |
| Name: | Hector & Dianna Ornelas |
| E-mail address: | hodoandjo@aol.com |
| Name: | Terry Buchamer |
| E-mail address: | wendy_buchamer@telus.net |
| Comments: | Jared was born May29th 1999 Left side CDH has severe food
aversions, developmental and speech delays,50%gastric emptying on cispride and NGfed going to Gtube and a Phloroplasty surgery soon. want to say thanks for all the support and knowledge you have given my wife Wendy and the comfort that someone understands what we are feeling and going through. Jareds Proud mom&dad and sister Mikayla Terry |
| Name: | Sonya Kay Keel, BSN RN |
| E-mail address: | enloe2@aol |
| Name: | Jennifer DiMaria |
| E-mail address: | vin411@aol.com |
| Comments: | I discovered CHERUBS a few days ago (you can scroll down to
my first post) and received alot of very helpful information. I have a few more questions, if anyone can help. What percentage of CDH are diagnosed inutero? How many babies are born each year with CDH? |
| Name: | Stephanie Low |
| E-mail address: | newlows@msn.com |
| Name: | Michael Nichols |
| E-mail address: | mnichols@pldi.net |
| Comments: | Hi!
My son too had a diaphragmatic hernia when born 19 years ago May 2. He was very sick for about the first 5 weeks of his birth. He had a bowl obstruction surgery when he was 2 from adhesions from the first surgery. He is now 19, a graduate of High School and in his freshman year in college at Northwestern Oklahoma State University in Alva, Oklahoma. Thanks to Dr. William Tunnell at Children's Hospital in OKC and God, our first son is alive and well. Just thought I'd write and let you know that I really like your site. Sincerely, Michael Nichols |
| Name: | MATT , JILL, AND JAYDEN MILLER |
| E-mail address: | WWW.MQP1@AOL.COM |
| Comments: | WE HAD A CHILD BORN WITH DIAPHRAGMATIC HERNIA ON 8-13-97.
WE WOULD LIKE MORE INFORMATION ABOUT THIS GROUP. I CHECKED IT OVER A LITTLE AND IT SEEMS INTERESTING. THANK YOU, JILL |
| Name: | STACIE FRISKE |
| E-mail address: | t.friskesr@worldnet.att.net |
| Comments: | Cherubs had helped me when i pregant with my
son, which also had cdh. unfortuntly he didn't surive. I'am expecting my third son and he's going to be all right. I had just wrote the same message but i had wrote the wrong e-mail address. |
| Name: | Jennifer DiMaria |
| E-mail address: | vin411@aol.com |
| Comments: | We never even heard of CDH until shortly after our daughter
was born on Feb. 15, 2000. No words can describe what we went through, but now that I found this web site, I feel like there are people who understand. Rather than feeling bad about not having a "perfect" baby, I now realize how lucky we really are. Sydney Lynn had her surgery at 3 days old and came home when she was 10 days old. So far she has no other medical problems. My heart goes out to all of you that are grieving. Does anyone know what causes CDH? Is it possible to have more children that have CDH? If anyone can answer me, please let me know. |
| Name: | Darlene Miller |
| E-mail address: | spefandy@alltel.net |
| Comments: | Our second child Allysa Ann was born on Feb. 6,1996 with
CDH we had no idea until she was born that anything was wrong. She was flown to the nearest Children's Hospital but as hard as she fought, she lost the battle 33 hours later. Not having even heard about CDH before Allysa was born, when she died I still didn't understand this defect very much, but as I read this web-site I am getting a very good understanding, it is helping in the healing process alot. I need to know everything I can to help me understand and accept her death. Thank you! |
| Name: | Louise parsons |
| E-mail address: | MPar803498@aol.com |
| Name: | andy ditchfield |
| E-mail address: | ditchy@bun.com |
| Comments: | hello,
I have a son called luke with cdh and would just like to say hello. at the moment he has just been diagnosed and is waiting for treatment. |
| Name: | Robin Gress |
| E-mail address: | diet_coke_gress@yahoo.com |
| Comments: | I had a baby girl November 1,1999 and she had a congenital
diaphragmatic hernia . She also past away November 1,1999, she was so beautiful as though nothing was wrong. She is sadly missed by all of her family. Her name was Hope Marie. |
| Name: | Marina Butler |
| E-mail address: | mbutler@roxburgh.com |
| Comments: | My grandson is in the hospital now with this condition. He
is 18 months old. This was not found earlier and his breathing problem was said to be asthma. He has been in the hospital of 3 weeks now. I am very concerned. I'm grateful to have found this web site. Thank you. |
| Name: | pilin |
| E-mail address: | plpl@thaimail.com |
| Comments: | I want to know about this.I will study in
medicine.I have a case study to discuss in my class on this topic |
| Name: | Karli Pulse |
| E-mail address: | skpulse1999@splitrocktel.net |
| Comments: | Our baby Cole would have been 5 months old today. There is
not a day that goes bye that I don't think of him. I would give anything just to be able to hold him again. To everyone who is lucky enough to still have the greates gift God could give,tell your children everyday how special they are and how you love them,you never know when they may be called "home". Cole lived 8 hours. We never heard him cry,never saw him open his eyes. Our only comfort now is that he is no longer in pain and he is waiting for us to rejoin him in heavin......WE MISS YOU COLE. |
| Name: | melissa mitchell |
| E-mail address: | mitchellmel28@hotmail.com |
| Comments: | my son, Adam was born November 17,1999. His CDH was
diagnosed a few hours after he was born. He had a left sided hernia and it was repaired at 5 days old. Since then he has done well. On may 11th he had a follow up chest xray which showed hyperinflation of his left lung with a worsening shift of his heart to the right side. He then had a ct scan on May 19th and there was no apparent cause for the hyperinflation. I would love to find out if there are other parents out there who have had similar problems with their babies after this kind of surgery. My husband and I would love any information. I've enjoyed reading stories on the internet and information provided by Cherubs. Thanks. |
| Name: | Kristi Parr |
| E-mail address: | ckmparr@mindspring.com |
| Comments: | My 1st Daughter was born at 34 weeks after a bad car
accident I had at 26 weeks and my water broke and was put on bed rest for the remaining weeks. She was very severe when she was born and a few minutes later went into respiratory distress and went blue. The nurses suctioned her then gave her to my husband and 1 minute later turned blue again. She was then wisked off to nicu where she was put on a ventulater she started to crash and after many tests a few specialists were called in from a childrens hospital. She was then paralized with meds to survive a transport of 45 min. to All Childrens Hospital in St. Petersburg Florida where then at midnight was critical in the level 3 nicu. She had severe pnumonia , colapsed lungs, her PDA valve did not close at birth, And because she was in renal failure she couldn't recieve the meds to close it. They said she had a seisure in transport and maybe 2. It was a run with the clock to get the Pda Valve closed. But we were waiting for her to just uninate. She had cloged uriters due to blood clots in them and she had kidney nephrosous. By the next 12 hours we were able to give 1 of the 2 injections to close the PDA valve and thank God the 1 worked. Because her Kidneys could not handle another. Little by little we were turning down the oxygen level. And by the third day we were able to take out the cental line from the belly. And by the 5th day we removed the ventalater. And then we were moved to the leval 1 nicu and our Maranda Grace slowly came around. At 12 days she came home at 5 pounds. But still had obsticales to over come. We thought we were comming around when at 7 months she jumped out of her seat belt in the kitchen and fell face first onto tile flooring. She was taken to the hospital with a fractured nose and when x-rayed found a mass in her chest. From there back to All Childrens hospital and was sadated where she stopped breathing. After being forced on oxygen again and slowly came around after an abdominal CAT scan, we found out she had a Diaphramatic hernia and her liver and intestins were around her heart. Crazy enough she did not have any signs of this. We now say her angels pushed her from that highchair so mom would find this. Thank God for the delay on the hernia because she would have never lived if this happened at birth. Maranda Grace just turned 2 years old and has a 2 month old sister now named Victoria who on her 2 month birthday celebrated in surgery for an inginal hernia of her left ovary. Talk about strange things. Maranda still has an enfiltrated diaphram and Kidney nephrosous but is a very active 2 year old and we are watching her closely for any signs of reoccurance. Hopefully this is the end of the surgeries for both. God is keeping us strong and through it all has made a closer family bond. |
| Name: | jennifer vise |
| E-mail address: | tjvise@yahoo.com |
| Comments: | I was just looking over the new web site and it looks
great!!!!! Its Mother day today. It is a great day to reflect on the miracle I have, Alexander Vise, my 5 year old ECMO/ diaphragmatic hernia child. It is such a blessing to be his Mother and the Mother of his little sister, Sarah. Thank you Dawn for making this web site available. Love and friendship, jenni Vise |
| Name: | Susan Nugent |
| E-mail address: | sue_studio@ivillage.com |
| Comments: | Thank You! Thank You! Thank You! For such a wonderful site!
My youngest was born with cdh and thankfully She is doing great now. I only wish this site was online back in 97. I have made sure Ashley's surgeon knows about this site. I am working on Ashley's story. |
| Name: | Jill McGee |
| E-mail address: | JMcgee26@aol.com |
| Comments: | We found out at 29 weeks of pregnancy, while in the
hospital due to premature labor, that our daughter had CDH. We were life-lined to IU Medical Center in Indianapolis, IN. We were informed about the defect and were awaiting further testing the next day. The next day, on 4-28-00 Alexandria was born. She was put on ECMO and many other machines. A few hours later we were informed that she also had 2 heart defects. We had to make the hardest decision of our lives- we had to let little Alli go home to God. We are very thankful for the doctors and nurses at IU Med Center and Riley Children's Hospital. They were very supportive and knowledgable. We were able to hold our daughter to say hello and good-bye to her. We are very thankful for being able to hold her and take pics of her. Thanks to this site I am able to learn more about this terrible defect and read others stories to know I am not alone!! |
| Name: | Pam Casey |
| E-mail address: | CalgonGal@aol.com |
| Comments: | Many thanks to those who invest much time and effort into
the production of this website. My son, Andrew was born with left side CDH. He survived ECMO, 7 months in intensive care, 3 repairs and a number of other surgical procedures. He is now 4 years old, on supplemental oxygen only at night and still primarily g-tube fed. Andrew's fine and gross motor skills are improving and his cognitive ability keeps me on my toes! Our biggest challenge is oral aversion. We offer many tasting opportunities some with more success than others. While Andrew will lick and bite foods, he is hesitant to chew and/or swallow. Drinks water well, but not interested in much else. Just learning to use a straw. Would appreciate input from anyone facing similar challenges. Andrew attends developmental preschool 3 days a week. He receives speech, occupational and physical therapy and participates in adaptive physical education at school. Considering our original prognosis, we are truly blessed to have this mischievous cherub as part of our family! |
| Name: | Heather Bannister |
| E-mail address: | heatherb@nfld.com |
| Name: | Heather Bannister |
| Name: | Michelle Meulebroeck |
| E-mail address: | meulebroeck@mvtvwireless.com |
| Comments: | I think this a very important web sight. We lost our
little angel Brandon in 1987. He was born with a diaphragmatic hernia, we had no idea there was anything wrong until he was born. Then the nightmare began. He did not survive, but we hold a very special place for him in our hearts. We also have an angel collection that is added to every year by family members and friends. Thank you again for the wonderful sight. God Bless all the little Cherubs and their families. Michelle Meulebroeck |
| Name: | Michelle Meulebroeck |
| E-mail address: | meulebroeck@mvtvwireless.com |
| Comments: | I think this a very important web sight. We lost our
little angel Brandon in 1987. He was born with a diaphragmatic hernia, we had no idea there was anything wrong until he was born. Then the nightmare began. He did not survive, but we hold a very special place for him in our hearts. We also have an angel collection that is added to every year by family members and friends. Thank you again for the wonderful sight. God Bless all the little Cherubs and their families. Michelle Meulebroeck |
| Name: | Brandy Martin |
| Comments: | My son Zachary DVon Henry was born on April 21st, 2000, and
died on April 21st, 2000. I found out at about 21 weeks that my son had a diaphragmatic hernia. When he was born he only lived for about 30 minutes before his heart stopped and his lung collasped. It was the saddest day of my life. This website has helped me get through it a whole lot easier. Thank you. |
| Name: | DeLisa Thompson |
| E-mail address: | bpage@sonet.net |
| Comments: | This site has been very informative for us. It is nice to
know that we are not the only parent that have had to go through such a difficult time. This was our first child and we had no idea until he was born that he had this. He was in the hospital for 6 1/2 weeks and it seemed to last forever. We have been at home for 2 months and every day I look at him and thank the Lord for giving us this angel. We are so blessed that he is doing so well. |
| Name: | Mary |
| E-mail address: | Jellypoems@yahoo.com |
| Homepage URL: | http://www.geocities.com/jellypoems/AustinPreemie.html |
| Comments: | I have a very inspiring story to tell anyone who is reading
this guestbook. My best friend (Tarah) gave birth to a baby girl with CDH on December 26, 1997 at St. Mary's Hospital in Duluth, Minnesota. Morgan (the baby girl) weighed 5 LBS 15 OZ. at birth and was 19 1/2" long. She was rushed by LifeLite (helicopter) down to the Minneapolis Children's Hospital where she spent several weeks recovering from her life-saving surgery. There is hope for CDH kids! They can survive! Please visit my web pages (there's links to Tarah's web pages for Morgan on my LINKS page). |
| Name: | Nancy Y. Uribe |
| E-mail address: | www.nonsense@bigplanet.com |
| Comments: | In December of 1994 I had a baby boy with CDH. Alex is 5
years old and goes to preschool. He is still on oxygen. He has had about 5 reoccurances of the hernia. We have gone thru alot. We are still waiting for another surgery. But the best thing to do is to wait. He has such a hard time gaining weight. Besides all this I am a proud mother of a strong child who I love dearly. I still have hope that he will be O.K. someday. :) |
| Name: | Rene' Fields |
| E-mail address: | jamieandrene@earthlink.net |
| Comments: | I was recently informed about your website, what a
blessing! Our youngest child, Bethany is a surviving cdh cherub. She is 3 years old now. I am looking forward to attending a portion of your annual conference. Thank you for developing this site. |
| Name: | Rhonda Pendley |
| E-mail address: | www.rntpendley@yahoo.com |
| Comments: | Our son, Kyle, was born with a CDH December 14, 1994. If
he had weighed one ounce less, they would not have been able to place him on ECMO, which saved his life. After five weeks in intensive care and three surgeries, we were finally able to take Kyle home. He could not be around other children or out in public until he was over two years old. He is now in preschool full-time and recently registered for kindergarten. To look at Kyle you would never know that he was born with such a life-threatening illness. He is our miracle - God has truly blessed us. Kyle has never reherniated, but has trouble gaining weight, as he only eats small amounts at a time. He was also born with a bladder reflux condition and with undesended testicles, which he had to have two surgeries to repair. Kyle has severe stomachaches/attacks in the diaphram area. He's been tested to find out why, but nothing has been conclusive. Doctors now have him on Zantac, twice daily, which has helped. I was wondering if there is anyone else out there who has experienced any of these same problem? Doctors have not indicated that any of these conditions are connected to the CDH. |
| Name: | Bob and Terri Stevens |
| E-mail address: | rsnevets@msn.com |
| Comments: | Our daughter has just had her fetus diagnosed with CDH. She
knows about your web page. I visited your page tonight, and thank you for the support you are giving to parents worldwide. Bob Stevens Beaverton, Oregon, USA |
| Name: | David Partin |
| E-mail address: | dpartin@mindspring.com |
| Comments: | Dawn,
I talked w/ you last week about my sone Caleb being born w/ CDH...he was on ECMO for 4 days, and is very stable now. They plan on doing surgery in a couple days. We are so excited to see his progress. I tried to click on your join us button but the link is not working? Maybe you can send the info to my email address. Thank you for caring enough to do such a great organization and website! I have really enjoyed reading the yearly surveys on your website, it is encouraging to see that the actual survival rate is higher than the "quoted" 50%. MY ECMO specialist said that the survival rate for a CDH baby on EMCO is over 70% at Egleston in Atlanta! Thanks Dawn! David and Deeshia Partin 770-919-2162 3009 Andora Dr. Marietta, Ga 30064 My son is Caleb Townrow Partin born 4/20/00 wieghing 6 ib 12 oz and 21 inch long, he arrived at 36 weeks. What a doll! |
| Name: | KAREN (GAMMA) |
| E-mail address: | gbarnhart@supernet.com |
| Comments: | MICHAELA IS MY GRAND-DAUGHTER. SHE IS MY MIRACLE BABY. I
LOVE HER DEARLY. SHE IS BLESSED BEYOND WHAT WORDS CAN TELL. THIS STORY AND ADJOINING PAGES BRINGS TO LIGHT HER STORY AND ALL ABOUT CDH. |
| Name: | Jun, Jongkwan |
| E-mail address: | jhs0927@snu.ac.kr |
| Comments: | This is the first time to visit Cherub. I am an
obstetrician working at university hospital. Annually I meet two to four fetuses with diaphragmatic hernia. I am interested in it. But I need some update information. Recently, I have entered osteogenesis imperfecta foundation website. In America, lots of support group are working actively. I envy you, Americans. Thank you. |
| Name: | kelly dolan |
| E-mail address: | dskymoon |
| Name: | Jennifer Cumming/Jordan |
| Comments: | Jordan was born with a severe diaphragmatic hernia in
November 1989 and was flown by the Royal Flying Doctor Service to Perth (Western Australia). He had 3 operations to repair it and at the age of 3 1/2 months was able to come home. He died aged 4 months at home, but we are forever grateful that we had time with him at home. We have had 4 more boys - all strong and healthy - and Jordan is a constant presence in all our lives. I was delighted to come across this site. Thanks |
| Name: | Roberto & Angela Richarte |
| E-mail address: | richarteranch@webtv.net |
| Comments: | We are the parents of a child with CDH and we've come here to learn more about this condition and to learn about the alternative methods available for all the other symptoms associated with CDH (GERD, feeding disorders, CLD). We welcome any input!
|
| Name: | kendra campbell |
| E-mail address: | kyc111@aol.com |
| Comments: | I too had a baby with a diaphragmatic hernia. It's been
awile, but the pain is always there. This happened in 1997. His name was Luke William Campbell, unfortunatly he didnt make it, but i know in my heart we did all we could. Back then i did look you up and i even spoke to the woman who found "cherubs" she was a great help and i would like to thank her, i know i'm late, but i guess i've been thinking about it lately. Since then i have had 2 childeren. A boy almost 2 and a daughter thats 3 months. They are definately a joy, but i still always think about my first little boy Luke. His birthday just past and the anniversary date that he died is coming up. thats probably why its on my mind so much. Anyway your sight really helped me, i cryed alot, but i guess i had to. Thank you. Kendra Campbell |
| Name: | Tarah |
| E-mail address: | TarahNMorgan@yahoo.com |
| Homepage URL: | http://www.geocities.com/tarahnmorgan/NICUINFO.html |
| Comments: | my daughter was born with a diaphramatic hurnia and was
only given a 40% chance of surviving! She's not 2 years old. Check out her web page and read her story. Please sign the guestbook. |
| Name: | Tarah |
| E-mail address: | TarahNMorgan00@yahoo.com |
| Name: | sheila farley & Doris Klotz |
| E-mail address: | sfarely@littlerock.state.ar.us |
| Comments: | We are Nathan Hunter Wilson's Great Grandmother (Doris
Klotz) and Hunter's Great Aunt(Sheila Farley). He is such a cute,fun, happy baby. We love him very much. |
| Name: | sheila farley & Doris Klotz |
| E-mail address: | sfarely@littlerock.state.ar.us |
| Comments: | We are Nathan Hunter Wilson's Great Grandmother (doris
Klotz) and Hunter's Great Aunt. He is such a cute,fun, happy baby. We love him very much. |
| Name: | michele childress |
| E-mail address: | no email |
| Comments: | hello. I would like to correspond with anyone whose lost an
infant to cdh and/or pallister killian syndrome.We lost Kayla in Oct.99. If you wish to correspond i dont have the internet so please mail me at: michele childress 123 Hughes Ave Bakersfield Ca 93308 |