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| Name: Jennifer Bruno Our child's name: Anessa Leigh The date our child was born: 05/03/2005 The date we lost our child: 05/11/2005 The hospital where our child was treated: St. Louis Children's Hospital The physicians who treated our child: Dr. Harris Our story: My beautiful baby girl was born from a pretty uneventful pregnancy, as most of yours were. She was full term and weighed 7pounds. She was so perfect but I had this awful feeling that something wasn't right. Even though her doctors said she was perfectly healthy I didn't feel the same, mother knows best I guess. Anessa was just like any normal baby the first 13 hrs of her life. I breast fed her, burped her and fed her again that night around 3 in the morning. She was so sweet with this perfectly round head and I remember the feeling I had when she fell asleep on my shoulder while I was burping her. Its like nothing I have ever felt before. I loved her so much! I just started praying to God that my feeling would go away. The next morning I wanted to cuddle with her so I laid her in bed with me. When the nurse came in to do my vitals she noticed she didn't look right and took her to the nursery. The doctor came in around 30 min later stating that she had stopped breathing and they weren't sure why. They said her SATs were back up, she was getting her color back, and would probably be fine but wanted to send her to Children's Hospital just in case. He even said from the blood work they had done the night before they didn't see this coming, she caught them with their pants down. I was in complete shock. My friend had had a baby with a lung condition right after birth that pulled through just fine so I thought for sure she would pull out of this. I remember going to see her in the nursery before the doctors got there. She was under the oxygen hood crying but the second I touched her she stopped. It warmed my heart that she needed me. I talked to her and she held my finger all the way to the helicopter. It was an hour and a half drive for me to get there and I was panicking the whole time not knowing what was going on. When I got to Children's and found the Nurse Practitioner that flew with her I ran up to her and asked how she did. The glum look on her face said it all and she said my family and I should sit and wait to hear from the doctors. An hour later they came in and said it was Pulmonary Hypertension and that should would get worse before better. I didn't get to see her again until 13hrs later when she was finally stable. Then however, I couldn't touch her or talk to her because she was so unstable. I just sat there and looked at her and cried all night. The next day her SATs crashed again and this is when they placed her on ECMO. This was terrible but so great at the same time because now I could hold her and kiss her and tickle her feet and she responded to all of it. She did well for the first few days but then her chest tube ruptured an artery on her ribs and they had to do surgery. Since she was on so much heparin the bleeding just got worse until they were giving her 100cc an hour of blood. She was loosing it faster than they could keep up with. They made the decision to take her off of ECMO early and they didn't think she would survive. We went in to tell her bye. She hadn't opened her eyes since I last saw her before she got on the helicopter, but this time she opened her bright blue eyes and smiled at me. It crushed me. The surgery to take her off went much better than expected and pulled out strongly. They had high hopes, and so did we. She did great the first day she was off of it and they were talking about feeding her my milk the next day and coming up with a diet plan. Just as it all was getting better that very night her SATs crashed again and they were having a hard time keeping her stable. I fell asleep on my knees praying that night. The next morning the nurse told me that doctors needed to talk to me. They gave us the option of letting her go but I couldn't make that decision just yet. They told us we should spend some time with her because they didn't think she would make it through the day. A couple hours later, when I saw first hand that she wasn't responding to CPR anymore I realized it was best to take away her suffering. They stopped all resuscitation and left her on the vent. About an hour later, when her heart rate reached 18 beats a min. they turned the vent off and she went to be with God. After she died we spent 3 hours just letting family who hadn't had a chance hold her. I miss her so much and I thank God for those 8 days I got to spend with her. She was my little angel and there isn't a day that goes by that I don't think of her. She taught me so much about love in her short life that I will never forget.
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| Name: Tara Harvell Our child's name: Alyssa Marie Felps The date our child was born: November 29, 1999 The date we lost our child: January 6, 2000 The hospital where our child was treated: USA Women and Childrens(Mobile&Birmingham) The physicians who treated our child: Dr. Ham Our story: Our precious daughter, Alyssa, was born with ACD in 1999. It was very unexpected because I'm sure like alot of you, my pregnancy went very well and she seemed to be very healthy. I knew something was wrong the next morning after she was born when two doctors came to my room. They explained to me that they weren't sure what was going on but reassured me that they were searching for an answer and trying to keep her very comfortable. I was devestated and everyone tried to tell me she would be ok. But a mother knows best. I had that aweful feeling that it was gonna be anything but ok. They tried several things to reverse the situation and when those things did not work, they sent her to Children's hospital in Birmingham, Al, where she was hooked up to the ECMO maching. Those 2 weeks were probably the best, because we were actually able to hold her, which is the best feeling in the world! Unfortunately it did not last and after all the attempts to save her, she was really suffering. On January 6, 2000, We had to make the hardest decsion in life we'd ever have to make. We had to let her go to be with God. My baby was no longer going to suffer. She was the toughest little person I've ever had the pleasure of knowing. It's been 9 1/2 years and there is not a day that goes by that I don't think about her, thank God her, tell her I love her. I am thankful for what little time I had with her, and I pray that one day there will be a cure for this monster disease. To all the parents who have suffered, I feel your pain and we can all be happy knowing our little ones are with the Lord..They will never be forgotten!
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| Name: Andrea & Paul Scurti Our child's name: Addison Grace Scurti The date our child was born: 12/10/2006 The date we lost our child: 1/22/2007 The hospital where our child was treated: ACH St. Pete, Florida The physicians who treated our child: many Our story: A living nightmare pretty much sums it up. Our little dove lived for six painful weeks. She was so perfect. I still to this day wonder why. We think about her every day. We now have a little 16 month old miracle, Mollie. She was born 3 months early and presented signs of ACD. She had PPHN for 10 days and required a HFOV and NO, the doctors did not think she would make it. She is a healthy, full of life little girl. I can't help but think that she has a part of her big sister's spirit in her. So there is hope, even though we will probably not dare to try for another child.
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| Name: Cheryl & Christopher Our child's name: Brandon Kenneth The date our child was born: January 15th 2009 The date we lost our child: February 13th 2009 The hospital where our child was treated: Vermont & Boston Children's Hospital The physicians who treated our child: Dr. Pfister, Mercier, Van der velden, Spencer Our story: Our story began like most others before us, it was our second child the missing piece to our family that we were eagerly awaiting. My pregnancy was pretty uneventful and quite easy until the last month. I was asked to have a fetal stress test done, where they monitor the heart rate for 15-20mins. At 36 weeks I sat there hooked up for more than an hour, I was then asked to go home and eat something then return. After doing so the heart rate seemed to respond and I was asked to return in 2 days. It was that day that the rollercoaster began. After 45mins of being monitored my midwife informed me that they didn't see enough peeks to let it be and I would be induced today. My mind raced, I wasn't ready we weren't ready would everything be ok, would i end up with a c-section was my biggest fear. Which soon became reality. After only 2hrs I was brought in for an emergency c-section, all I could ask is he okay, we had a son!? I felt awful laying there helpless only to be informed in recovery that Brandon would need to be transferred that he is having some breathing issues. A team came after I saw him breifly and brought him an hour away to the NICU at Vermont Children's.My husband stayed with him overnight as they proceeded to intubate and evaluate Brandon. I wasn't able to visit as I was an hour away still. Yet on the third day I visited him for the first time my heart ached I never expected this. All I could do is cry and apologize to him over and over. We were told that they were checking for pneumonia, which we thought oh no, not knowing that pneumonia would've been cake compared to the following weeks. After ruling out infection and his platelet levels were no longer the issue we were given PPHN as the diagnosis.Which we were told that all they needed to do was dialate the blood vessels, and continued to assure us that this is common and treatable. After 2 days we walked into the Nicu to see Brandon on only room air and the canular, I was in my glory. I held him for hours and planned on nursing the next day I counted the days thinking he should be home in a week we can handle this. The whole time being away from our 2 yr old who was home missing us. On our way to see Brandon we were involved in what could've been a horrible car accident, I thought could it get any worse? Yet after two good days with Brandon looking great, he was back to square one with the ventilator. His platelets were up and no longer a concern however a simple infection was clearly not the case.The doctors then informed us that they would try NO, which he responded to immediately and did fine on. However, once they attempted to wean him off the desaturation began. They continued to do ultrasounds of his stomach, heart,and brain to rule out other things. After days of waiting they decided to try sedanifil or Viagra; this was their last effort. We were beside ourselves, what if this doesn't work? The doctors began the Viagra treatments and attempted to wean Brandon off the ventilator with little success. Everyday was a nightmare we were afraid to even step into the NICU and worried to death what each phone call might bring. After 2 weeks Vermont Children's had exhausted their efforts and arranged a transfer. As parents we stood there helpless and watched a Med-flight team take our son to Boston Children's 5hrs away! We drove down the next day for the weeked only to talk to some really great doctors & nurses about Brandon's future. They were able to stabilize Brandon and heavily sedated him, I couldn't believe how many IV fluids there were, he had gone from 3 fluids to 10 and 12 in the end. The team had many ideas and set up a ct scan which showed nothing that would explain the condition. We were told about surfactant defficeincy and questions about our family history yet nothing gave an answer that we desperately wanted. We left and returned after a horrible week of phone calls only to be told that they were having trouble keeping Brandon alive. We flew down only to have a meeting to discuss the next step, Brandon wasn't well enough for a lung biopsy and even so the only thing they could do is a transplant. However, the doctors saw no harm in doing a high dose steriod our last hope. We consented to the steriods and a cardiac cath the last week only to be told nothing was present that could explain the condition and it was clear that Brandon would not get better. We knew that we could not let Brandon lay there in the hospital only to suffer, we refused ECMO and made the long drive knowing we were going to say goodbye to our son. At 4lbs 8 1/2 oz my son is the strongest person I have ever met. We said goodbye without tubes and in peace in my arms with his father beside him and a nurse I will never forget. Brandon will be forever missed & never forgotten, and we hope to help prevent anyone from ever experiencing our pain in the search for an explaination & cure.
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| Name: Humpherys, Randy and Wendy Our child's name: Laykin Shy Humpherys The date our child was born: March 18, 2008 The date we lost our child: March 29, 2008 The hospital where our child was treated: St. Josephs Phoenix, Az The physicians who treated our child: Dr. Guteirrez, Dr. Fortinov Our story: Our first grandbaby!! We were so excited when we found out that Kara and Erik were expecting. They had been married for a couple of years and so much planning was rewarded with the news of the pregnancy, and we were even more excited that it was a baby girl as they are scarce in our family. Pregnancy went well, we were kept up to date w/photos and ultrasound pics, we discussed cures for morning sickness on the phone, talked about names, spoke of when I would fly to Las vegas to hold my littel angel. The day she was born, I received a photo on my cell phone that made leap w/joy, a txt message that she was here and healthy and happy and that Erik would call me soon. Then I noticed that in the picture, even tho she was pink and alert, she had moniter leads on. I am a neonatal RN and knew that this was not routine procedure w/a "normal" delivery. I waited for Erik to call, he did, things were great at first, tho she had not cried much after birth, ok I thought she is just a mellow kid, unlike her father. Not too much later I recieved a call that she had a spontaneous pneumothorax and would need a chest tube, ok I thought again, not all that uncommon, it would be ok. Meanwhile I was on my way to the Salt Lake City airport to catch a plane to Peru where I would be volunteering on a medical humanitarian mission. The morning I was in Atlanta on my way to South America, Erik called me to say that Laykin was on an oscillator and they thought she had severe PPHN and would have to have ECMO, and would have to be transported from Las Vegas to a center where they could do ECMO. I spoke w/the neo at Las vegas and he told me that she may not survive the flight. She did, and did well. I went on to Peru, keeping in touch w/Erik as freqently as I could. The first couple of days i was in Peru, Laykin did well, responded to treatment was awake and alert despite being intubated and sedated, she was beautiful and had such a fighting spirit. Over the course of the next few days, she did so well they were able to stop the ECMO, and she went to a conventional ventilator. However, the pneumos were still a problem, they could not keep the fluid off of her lung. I recieved a call from Erik, things were not going well. I then changed my flight and flew from S. America to Phoenix. When I got to Phoenix, my husband was also there. We spent the next several days at the Ronald Mcdonald house, going back and forth to the hospital. Laykin did well for a few hours, then would be critical. The morning she died, I had gotten up early and walked to the store for a few needed items, I got a call on my cell, Erik saying that they needed us at the hospital now. We got there, and they took us right to Laykins room. Several nurses and Dr. Fortinov were there, it looked grim. After hearing what had happened in ther early morning hours, seeing that Laykin could not fight anymore, we chose to discontinue life support and let her die peacefully in her mothers arms with her father and loved ones at their side. I remember being so overwhelmed, I will never forget the shock and hurt in my sons eyes when they told him that Laykin was dying. I hope that a cure can be found for the future children and peace of mind that all of us that have been thru this experience want. Our little "angel baby" we love you and will never forget the joy you brought us in your short 11 days of life.
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| Name: Lauren Our child's name: Avery Mae The date our child was born: March 17, 2006 The date we lost our child: April 3, 2006 The hospital where our child was treated: Hospital for Sick Children, Toronto The physicians who treated our child: Dr. Cox, Dr. Langer and many others, Our story: At 19 weeks gestation, I was told that my baby girl would be born with a birth defect called Congenital Diaphragmatic Hernia. This meant that her diaphragm had failed to properly close, allowing her stomach, bowel, intestines and liver to move up into her chest cavity and affect her lung growth. I knew Avery would be in the hospital and require surgery. I knew she would be placed on a ventilator and maybe even ECMO if things got bad. Although I knew of the possibility of death as a result of CDH, I was hopeful. I did not think that there was no chance of her recovering. It was only after Avery's repair surgery, nitric oxide, mechanical and ocsillating ventilation, and the roller coaster ride that has been described by so many parents here before me, that ECMO was attempted as a last resort. Avery failed to improve, and by now had suffered irreversible brain damage. Despite unwavering efforts by a competent and compassionate team of doctors, Avery passed away at 17 days old. An autopsy revealed that Avery had Alveolar Capillary Dysplasia. My beautiful daughter is peaceful at last and will never be forgotten. My hope is that one day a treatment can be found so that innocent lives may be saved and the suffering of children and families can end once and for all.
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| Name: Daniel & Carrie Wilson Our child's name: Jacob Daniel The date our child was born: 24/05/08 The date we lost our child: 06/06/08 The hospital where our child was treated: Starship Childrens Hospital, Auckland, New Zealand The physicians who treated our child: Too many to name Our story: Jacob was the first twin born at 36 weeks gestation. (He is survived by his twin sister Emma). The pregnancy had been unremarkable apart from a large abdominal cyst that was seen on the right side in antenatal scans. His Apgar scores were 9 at 1' and 9 at 5'. Jacob was admitted to NICU because of the antenatal diagnosis of the cystic structure in his abdomen. Initially he was stable in air and self ventilating but by 10 hours of age he was having episodes of desaturation. He became increasingly unstable and reqired intubation and ventilation followed by high freqency oscillatory ventilation, nitric oxide and dopamine. At three days of age he continued to deteriorate and was transferred to PICU for consideration of ECMO. On the arrival of the PICU team he was unable to be moved because he was so unstable so Jacob was put onto venoarterial ECMO there and transported back to PICU on ECMO. Once on ECMO he was stable and inotrope support was stopped. He become very oedematous and required frusemide with good response. He was weaned off ECMO on the 1st June 2008 and decanulated but he was still ventilator dependent. Over the days that preceded his death he continued to deteriorate with increasing saturations and was unresponsive to ventilatory manoeuvres. He became cardiovascularly unstable and he had persistent raised pulmonary pressures. It was considered that Jacob had ACD and was removed from the ventilator and passed away on 6 June 2008 in our arms. He was just 13 days old. We only got to hold Jacob in the minutes after he was born and then again when the ventilator was removed and he was placed into our arms. His autopsy confirmed he had Alveolar Capillary Dysplasia and misalignment of the Pulmonary Vessels. He also had a malrotation of the bowel, transverse liver, cystically dilated duodenum and abnormal lung lobation. " An Angel opened the book of life, to record the baby's birth, and whispered as she closed the book 'Too beautiful for earth' "
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| Name: Leann & Chad Jeffers Our child's name: Blake Scott The date our child was born: November 9, 2007 The date we lost our child: December 25, 2007 The hospital where our child was treated: Minneapolis Children's Hospital The physicians who treated our child: Dr. Hustead, Dr. Bendel-Stenzel Our story: Our pregnancy with Blake was a typical pregnancy. Nothing to worry about and the doctors decided to do a repeat c-section at 39 weeks. Blake was born at 12:01pm on Nov 9. The doctor doing the c-section did comment on how much fluid was there but we didn't think anything of it. His apgar score was 7 and then 9 and he needed oxygen for a short time but they told us that was normal. That night Blake was in our hospital room and someone commented on his dark looking feet. We brushed it off thinking it was from the ink they used to stamp his footprints. That night Blake never really woke up to nurse and around 6am I had the nurse bring him into the room and I nursed him for about 20 minutes on each side. He never really cried much and slept alot. Around 8am the doctor came in and told us that she heard a heart murmur, the biggest heart murmur she'd ever heard and wanted to send him to a larger hospital. The hospital we were in was only a level one. They tranported him to Sioux Falls Avera Mckennan about an hour away. There they checked him over and told us that he had pulmonary hypertension and with nitric it would open the blood vessels up and after they were open he'd be fine and we could go home. He was on room oxygen for 5 days and then they decided to put him on the ventilator because his echo's were coming back worse each time. After being at the hospital for a week the doctors there decided that he needed to be flown to Minneapolis Children's Hospital. They wanted to transfer him so if he got worse he could be put on ECMO. The doctors mentioned ACD at that time but was sure it wasn't that because he was doing okay and the babies that they had seen with ACD only lived for 12 hours. On November 17 Blake was flown to Mpls. and upon arriving the doctors decided that his heart was going to go into failure if they didn't place him on ECMO immediately. We had him baptized by our pastor from home and they placed him on ECMO. He was on ECMO for 6 days and the echo reports were comning back that the pulmonary hypertension was ALMOST gone. The doctors were confident about taking him off. After coming off ECMO they kept him on high oxygen and nitric and slowly started to wean him. On December 15 he was taken off the ventilator and just had nose cannulals for oyxgen. It was amazing finally after a month we were able to hold our precious little son again. His big sister was able to hold him and touch him, Grandma was able to hold him. He was a miracle. We were sure that we were going to go home with him. About 5 days later he crashed and was put back on the ventilator and the echo's were showing that the pulmonary hypertension was back to where we had started. On December 24 we went home to spend Christmas with our daughter and family. Dr. Hustead had mentioned that she thought Blake had ACD and prepared us by banking Blake's tissues and DNA. That morning before we left they told us that he had pnemonia. We had just finished opening the last gift when our primary nurse called to say that Blake's oyxgen was dipping way low and we should come back ASAP. We got in the car and made the 3 1/2 hour drive back to the hospital all the while thinking that he had already passed. We got back to the hospital and as soon as the nurse placed Blake in my arms he's sats soared back up to 100%. I was still hoping and praying that he would pull out of this and come home with us. Sometime in the early morning hours his number went into the teens and there was a moment when I looked at the monitor and saw a flat line. We then decided that he had suffered enough and we took him off the vent. He passed away at 4:38am on Christmas morning with his grandma, grandpa, daddy and mommy all around him. We held him for quite awhile and then with broken hearts we left the hospital for the last time. We wanted to donate his organs but he had contacted MRSA while in the hospital so they wouldn't take his organs. Blake will forever be in our hearts. We miss him terribly and not a day goes by that we don't think of him. We were blessed to have one healthy child but sadly I had my tubes tied after Blake. Maybe that is a blessing because we don't think we could take the chance of this happening again. We are now on the journey through adoption. We have been chosen by a birth mom and are expecting a baby to arrive around October 1.
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| Name: Erik and Kara Humpherys Our child's name: Laykin Shy The date our child was born: March 18th 2008 The date we lost our child: March 29th 2008 The hospital where our child was treated: St. Josephs (phoenix az) The physicians who treated our child: Dr.Fortunov, Dr.Gutierrez, and lots of nurses Our story: We were so excited the day we found out we were pregnant! I had a wonderful pregnancy. No problems besides being sick the first trimester. On March 17th I had a doctors appointment and he decided to induce labor. Nervous but excited we went in to have our baby girl! After being in labor for 12 hours her heartbeat started to drop. The nurses got very nervous and decided to do a c-section. Laykin was born looking beautiful and healthy. She got an apgar score of 8. Curly light brown hair, big blue eyes, 10 fingers and 10 toes! Her cry sounded so cute but the doctor said she needed to cry a little more. So they took her to do some testing. We waited for her return and then everything happened so fast. The doctors came and told us something was wrong but they weren't sure what and they needed to transfer her to a level 3 NICU. By the end of that day they thought it was severe pulmonary hypertension and ECMO was her only chance. We set up the trasfer to Phoenix AZ. They told us that she was very critical and they didn't think she would make the flight. She was very strong and made it to Phoenix to recieve ECMO treatment. I checked myself out of the hospital and caught the first flight. My husband drove and met us there. It was the first time we got to see her. Ups and downs the whole time. She was doing better and they decided to take her off ECMO after 8 days. We were so excited and thought we would be bringing her home soon! But things started to go wrong. After multiple chest tubes the fluid around her lungs started to build up, they didn't know why it kept accumulating. Nobody had very many answers why our sweet little baby was so sick. On the morning of march 29th when we were on our way to see her, we got a phone call to come in a.s.a.p. We rushed there to see all the doctors and nurses crowding around her, trying their best to save her. When I saw their tears I knew that our story would not have a happy ending. Holding her for the first time surrounded by all of our loved ones Laykin went to heaven to be our "angel baby" As sad and scared as we are we are still hopeful to have a healthy baby!
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| Name: Kimberly A. Ratliff Our child's name: Charity The date our child was born: 6-16-2001 The date we lost our child: 7-6-2001 The hospital where our child was treated: U of M Ann Arbor The physicians who treated our child: Jennifer Grow, M.D. Our story: Charity was born 4 weeks early due to Placental Abruption. I had emergency C-section, but she still had an Apgar of 9.Weighing 7# 12 oz. 22 inches long. At 20 mins. everything went downhill. She was sent to Hurley Medical Center in Flint Michigan with a DX of persistent fetal circulation. 8 hours later, she was sent to Uof M Ann Arbor. She was @ 40% Oxygenation by then. Her Diagnonsis on her death certificate was PHTN. We donated her for a thorough autopsy. 4 months later, we were told that she had ACD. There wasn't much info. out there at the time. We did have 2 more healthy children after that. One boy and one girl. Notes: 1)I had an abnormal triple test.But I was told that Charity was born neurologically intact. 2)I had low progesterone in the first trimester and had to use suppositorries. 3) Charity had normal anatomy, except the absence of a gall bladder.
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