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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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| Name: Gene & Vicki Suker Our child's name: Gracie Gene The date our child was born: 10/17/2002 The date we lost our child: 11/22/2002 The hospital where our child was treated: Minneapolis Children's The physicians who treated our child: Dr. Singh Our story: In reading the many entries here, the stories are so similar to our own. My husband and I were extatic to find ourselves pregnant with our first child. I had an uneventful pregnancy up until our 20 week ultrasound. At that appointment we found out the our sweet little girl had a treatable heart defect and would need surgery at approximately 6 months of age to correct it. This news was scary, but we knew everything would be fine. When Gracie was born she looked and behaved like any other healthy baby. It was at about 10 hours old that the doctors discovered she had a lower blood oxygen level. They wisked her away to the Children's Hospital next door and put her on a ventilator. It was discovered that Gracie had to have surgery to fix a second heart defect which was a narrowed aeorta (coarctation). She flew through this surgery with flying colors at just four days old. We knew she was on the path to recovery after this. Just like many of the other stories told here, our rollercoaster ride was only beginning. Gracie would have long stretches of days, in fact a week to 10 days at a time, where she was getting better and better only to slip back a few steps. She always needed to have oxygen blow-by, even when she was doing great. This puzzled the doctors. She was always a sort of mystery. We almost got Gracie home twice in her five short weeks. The first time it was foiled due to an episode of apnea. Her doctor wouldn't release her until this was completely checked out. While being checked out, she was getting stronger and acting like any baby her age. We played, ate, took baths, and dressed her in her own clothes. I was in heaven being able to do all this. I didn't care if it was in the hospital or not. I loved it. The second time we almost got her home was terrifying. Over a period of eight hours Gracie kept loosing ground as far as her oxygen levels went. She really dipped low and was wisked from the-floor-that-prepares kids-to-go-home back to the ICU. She was so sick and had to be placed on a ventilator and nitric. The doctors' thinking was she needed to have her original heart defect repaired sooner rather than later. The doctors were backed into a corner because she kept getting sicker and sicker. Gracie's heart defect (an A.V. canal which is similar to a septal defect) was such that it allowed the blood that needed to be oxygenated by the lungs to mix with the blood that was full of oxygen. This made all the blood passing through her body not have enough oxygen to allow her to thrive. Even though she was very fragile, they did the surgery. It was at this time that a lung biopsy was performed. Gracie came through the heart surgery only to be placed on ECMO. She was on ECMO for 3 days before we got the horrid news about ACD. We got the results of the second opinion the fourth day. It was a Friday. We made the decision that she'd suffered long enough and wanted her to feel our touch and hear our voices as she passed away. So it was, at 5:35 P.M. on Friday, November 22, 2002 that our sweet baby girl passed peacefully from our arms into God's. She touched so many hearts in her short time here. We are so grateful to have had the honor of knowing her at all. But, all these years later, we still miss her terribly. I suspect it will always be like that.
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| Name: Andrew & Diana Locke Our child's name: Christophr Josef Locke The date our child was born: November 7th, 2006 The date we lost our child: December 17th, 2006 The hospital where our child was treated: Shands in Gainesville, Florida The physicians who treated our child: Dr. Sullivan, Dr. Kays, Dr. Bierle, Dr. Boehnke Our story: We found out we were pregnant on St. Patrick's Day. This was not an expected pregnancy but a gift. Our 1st son was 10 at the time, we were not using birth control since 1999 and figured it just wasn't going to happen. We were elated. So much planning, sharing.....I had to go and see the High risk OB's because I would be 39 at delivery. Our 2nd ultrasound showed "something" in the abdomen that the high risk OB's thought was "fetus in fetu" (a twin inside of a twin). As a surgical nurse, I knew that could be fixed if needed. So no worries. Every ultrasound visit was nail biting for us. Our docotrs kept "looking" for anything abnormal. Anything they could find. So they found things. But apparently not the right things. Our precious angel had enlarged left kidney, small chin, big stomach, flat bridge of his nose, and a VSD (ventricular septal defect in his heart) No problem, I said. All can be fixed or explained away. My mom has a small chin, we all have a flat nose, other stuff can be fixed..... I ended up with over 5 liters of fluid (amniotic fluid). It caused me to tear the muscles in my abdomen, which caused excruiciating pain for the last month of my pregnancy. All along the way, I protected Christopher. I wouldn't let the nurses "zap" him to get his heart rate up, I told him I would protect him from the mean doctor, and everything would be fine. Little did I know, it wouldn't be fine. We had our precious bundle at 38 weeks by c-section because I couldn't walk (from the pain and the fluid), I was getting short of breath (my uterus measured as if I was 47 weeks pregnant) and the doctors were starting to worry about when and if my water broke, cord prolapse, uterine bleeding and emergency hysterectomy. Our son was born at 6:33pm on November 7th. He was beautiful. Not a strong cry but at least peeing on the doctor. I found out after his transfer to another hospital all that went wrong from birth. He was not breathing well when he 1st swam out (which he did from all that fluid). His o2 sats were never higher than mid 80's, pressure just not high enough. He was also born with imperforate anus (I still wonder why they didn't notice this on the 3D ultrasound we did), duodenal atresia (stomach not connected to his intestines), and the other problems we knew of. He was very "persnickety" from the beginning. Didn't like to be moved, pressure would go too low, sat's too low. Within his 1st 24 hours of life, he underwent major abdominal surgery to connect his stomach to his intestine and create a colostomy. We found out then that he pretty much "coded" on the table but no CPR needed to be performed. The heart doctor cleared him and said it was PPHN and would resolve in a week or two. When they brought him out from surgery, it went downhill fast. That night, it was decided to send him by helicopter to another hospital that had an ECMO program. Our story is so similiar to everyone's. The ups and downs. The rollercoaster ride of dread and then pure joy at the good days. I felt something with Christopher. Like I knew he would never come home. We never got to hold him until we took him off of life support. Christopher made the choice of when it was time. It was almost like he knew we could not handle that decision. He quit absorbing the oxygen from the ECMO and the ventilator couldn't breath for him anymore. After 39 days on ECMO, our little guy grew his angel wings. I think they were there all along we just couldn't see them. During the last week of Christopher blessed life, I did alot of research on the internet and always came across the same thing: ACD. Something that our doctors had a very small suspicion of but did not want to put him through a biopsy to find out. We were talking about doing a biopsy that next week. We met with a team of doctors to discuss the autopsy results after about 3 months and the pathologist said it was his heart defect that did it. The cardiologist (who was there) did not agree and I presented all the doctors with information I had gathered from various sites about ACD and what to look for during an autopsy. We asked the pathologist to relook at his tissue samples and use the special dyes that all the articles mentioned. The pathologist called in the senior semi-retired pathologist to help. Out final diagnosis on cause of death was ACD. The senior pathologist said he had only seen 1 other case in his 30 years at Shands. In our battle to overcome the loss of our so wanted child, I have dedicated myself to making others aware of this devastating defect. As a nurse, I have a way into the ears of doctors. I know the medical community and plan on using this as a way to help raise funds and help in any way with the research. I feel that if I do so many things, God will finally tell me why this was to be. I may stumble upon that answer someday, but until then, I can only hope and pray that we find a cause, way to detect it and cure it soon. I look forward now to the day that I am predestined to die. Because I know I will finally get to hold my angel. He lives on with us every day and watches over us. As all our angels do.
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| Name: Harry & Lisa Durand Our child's name: Olivia The date our child was born: 11/2/2001 The date we lost our child: 5/23/2002 The hospital where our child was treated: Ellis, Albany Med & NY Presbytarian The physicians who treated our child: To many to remember Our story: Olivia Leona Durand was born on November 2, 2001 (All Saints Day). She was the third child of my husband Harry and I and finally the little girl we had hoped for. I had Gestational Diabetes with her and my previous pregnancy, but my other two boys were healthy and I had assumed the same would be for her. She was born a few weeks early and still weighed over 8lbs. I had her cesarean section and was told that she ingested some amniotic fluid during delivery so she would have to go to the NICU unit. I never really worried because they said that was very common and I never expected to have a sick child. This birth was different then the other two. I did not feel good at all after delivery and was very tired. I could hardly wake up and did not hold her until the next day. When I did see her she had tubes in her head and the oxygen in her nose. She was still so beautiful. The NICU nurses assured me that in a few days she would be fine and I could take her home. Still no worries. As promised I took her home from the hospital and life was good. She was very different then my other two babies. She was a little smaller then my first son Joseph 10lbs 7oz and Alexander 10lbs 6 oz, but that was to be expected because she was a girl. Olivia was never was a big eater, but she would nurse as expected. When she was around 4 months we were told to introduce her to formula and cereal. She did not do well with either. She could not really keep her food down and would projectile vomit most of the time. I was worried because she was not gaining any weight and she would sometimes turn blue after her nightly bath or when vomiting. The Doctor told me not to worry that not all babies are the same and it is ok that she only gained a few pounds since birth. She then had strep throat. My two boys had it and she was acting different so I took her to the Doctors. They told me that babies can not get strep and especially when they are nursing. Well, they were wrong. She had it and was treated. There was something inside me that I did not realize until after she passed, but I knew she was not going to be here long. I bought enough clothes to outfit a dozen babies. I would also buy sizes bigger all the way to size 4 thinking that if I bought the clothes she would wear them. I even told her Godmother that I do not worry about the money I am spending because I feel like I will not have her forever. Stunned and angry at me she questioned why I would say such a thing and I did not know where that came from. I guess a mother always knows. It was April 7, 2001 and I was at a baby shower for a friend. I had Olivia dressed up like a princess and everyone was looking at her and commenting on her beauty. Someone had asked me if I thought her lips looked blue and I explained that I had taken her to the Doctors and she is little and everything is OK. About 10 minutes later I looked at her again and I realized it was NOT OK to be blue. I abruptly left the shower and told my Mother I was taking her to the hospital. Of course my Mother thought I was over reacting, but was later glad I did. When we got to the hospital her oxygen level was 47. They thought their equipment was not fitting correctly so they took it again and after 5 tries they realized something was wrong. She was not crying or in pain, just sleepy and a tinge blue. They told me she had broncholitis and she needed to stay. We were in this hospital for a week and she was in an Oxygen tent. When she was in the tent she was pink and happy and beautiful. When we would take her from the tent to feed her or hold her, her lips would turn blue. I knew something was not right. The Doctor insisted that these things can take a few weeks but I had a sick feeling he was wrong. We insisted that we were transferred to a better hospital that had a PICU unit. After resistance from the Doctor we transferred to the hospital and were told they thought she had a hole in her heart that never closed up during birth. As bad as that sounded it was fairly common in newborns and a simple operation would help her. We were glad that she was diagnosed and would be fixed. The next day the Heart Doctor came in to do an Echocardiogram to assess the situation. When he was doing the procedure we could tell he was surprised and concerned. He told us he would be back and we waited. When they returned they told us that they believed she had Pulmonary Hypertension. A rare disease in infants that usually is characterized as high blood pressure in the lungs. They said it is a hard thing to treat especially in infants, but they were doing their best. They gave her Viagra to help dilate her veins and then for the first time in that hospital with a baby they tried Nitric Oxide to bring the pressures down. From here she went downhill fast. She went into cardiac arrest five times in one day. I remember watching them bring her back each time thinking it was over. They finally stabilized her and told us that there is nothing more they could do. One of the Doctors had called New York Presbyterian Hospital in New York City and hoped that they may have a solution because they had a group there studying Pulmonary Hypertension. Olivia was very sensitive and when she got mad or was not happy her blood pressure would drop and her heart would race. They were not sure if she could make the trip to New York City, but we felt that we had to at least try. We made it to New York City and that is where she spent her last 32 days. When we first got there they put her on an Echocardiogram Machine, which actually performs the functions of the heart and lungs. They warned us that most babies get large heads full of blood and bleed from their nose and mouth and wanted us to be prepared. When we got there they hooked her up and she responded well, opened her eyes, smiled at us and gave us hope. This machine was very scary and it was manned 24 hours a day. We could not hold her because there were canulas going into her heart and she had to be still. They told us that this would give her time to heal without causing brain damage or hurting her heart or lungs. The Pulmonary Hypertension specialists visited her often and were developing their plan. As the days went on they thought they could remover her from the machine. They did not want to leave her for more then one week because it could cause internal bleeding. When they took her off they had her covered in the blue scrub towels they use in the hospital and had one on her chest and body and one on her head. She reminded me of the Virgin Mary and I still had that feeling like the end was near. Each day she got worse, not better. They could not keep her blood pressures up and the pressures in her lungs down. The Doctors tried every combination they could think of with medicine and ventilators and they would keep her somewhat stable, but not really get any further ahead with a solution. After 32 days of 24 hours 7 days a week attention Olivia could not fight anymore. The Doctors and Nurses knew that there was nothing they could do and she would be fading away. My husband had left that morning and by 4 they had told me there was nothing left to do. My husband was taking my two sons to their ball game and then was going to come back to the hospital. When I called him with the news he realized he could not leave and make it there in time and wanted me to call him when she passed (we were 3 hours from home). My Mother was on her way up to stay with me until my husband arrived. It was 6:30 or so and I was holding Olivia on her bed. The first and last time that I was able to hold her in 38 days. Her heart rate slowly started to drop. I prayed that she would not leave until my Mother arrived. My Mother walked in the room and gasped when she saw me on the bed. She asked what I was doing and if she was doing better. I told her that this was the end of the road for Olivia and my Mother leaned over and kissed her. Within minutes Olivia passed away. During her stay at the hospital in New York I decided to start emailing my family and friends so they would not bother my Husband or my Parents while they were trying to get through this. I did not want them having to go over every detail each and everyday. The amazing thing was that I started with a handful of friends and family and each day the group would grow. I would give detailed explanations of what the Doctors were thinking and doing and what our hope was for the outcome. People would email me back with their prayers and wishes and ask to be added to the email list. There were people I had never met that were in one way or another connected to someone I knew. Churches were having masses in Olivia’s honor, families were having prayer groups and everyone was having faith. By the end of Olivia’s life there were over 150 email addresses that I personally sent to and then those recipients would pass it along to their friends. The email list was actually a worldwide chain of love reaching Europe and several other countries. Several weeks after Olivia died the Doctor in New York called me and told me that the autopsy discovered she had Pulmonary Hypertension and that was the cause of death. She told me that she was not really convinced of their findings and wanted permission to send Olivia’s slides to some other Doctors to get their opinion. Dr. Claire Langston was the Doctor who confirmed the New York Doctor’s suspicion and told her that Olivia had died of ACD. When I heard this I tried to get as much information as possible on this disease and tried to make senses of it. This is when I found ACDA. I was able to talk to other parents, share my story and make it real. I have met wonderful people all over the world that have lost a child or children and I have a connection with everyone of them. Olivia was only here 5 ˝ months, but impacted many people forever. From the day she was born she was adorned by everyone that met her. I dressed her everyday like she was going to a party. She was with me every minute of everyday from the day she was born until the day she died. She went to work with me everyday and everyone loved her. When she got sick she touched people literally all over the world and all different ways. At her funeral services people came to say goodbye to her that I did not know. They thanked us for the opportunity to be part of her illness and claimed that she had helped them. My husband and I found ourselves consoling people that came instead of us being consoled. I guess we will never know why this had to happen to Olivia or why it continues to attack other children. I do believe that everything in life happens for one reason or another and that we do not need to define ourselves or our lives by these tragedies. We talk of Olivia often and so do my children. We do not try to hide the fact that we lost her and we try to educate everyone we meet. I volunteer at the Ronald McDonald House at the hospital that helped us so I can let parents know they will get through their hardship, I did. Olivia is gone for now, but will always live in our hearts.
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| Name: Mara Our child's name: Charlie, Twin A and Twin B The date our child was born: May 17, 2006 The date we lost our child: June 18, 2006 and twin termination at 19 weeks The hospital where our child was treated: SD Children's Hospital The physicians who treated our child: Knight, Hanold, Lane Our story: Charlie was born with severe hypoplastic lungs in the absence of other structural anomalies. The diagnosis was atypical alveolar dysplasia. We adore him and he lives on in us, every single day. I went on to have two affected boy/girl twins; the diagnosis for all three kids: primary pulmonary hypoplasia. The twins' lungs were unaffected by ventilation and therefore lent themselves to a clearer clinical picture. It is theorized the pathogenesis of primary pulmonary hypoplasia may hold answers to the foundation for most congenital pulmonary malformations incompatible with life. Our case may help forward all cases. It is deemed autsomoal recessive primarily, there always exists a chance of there being a gonadal mosaicism among nonconsanguineous parents in which there is recurrence. In the case of primary pulmonary hypoplasia, which is extremely rare to find in utero if at all, the dominant gene theory is less likely.
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| Name: Gary and Vanji Our child's name: Xzendria Leigh The date our child was born: July 27, 2005 The date we lost our child: August 8, 2005 The hospital where our child was treated: Lucille Salter Packard & Kaiser Permanente The physicians who treated our child: many wonderful professionals Our story: We lost our sweet first daughter to ACD after 12 days of hoping things could be solved and she would come home with us. We are so greatful for her life, and for the first 19 hours that she sustained her little body before her ACD issues displayed. I think of her often and keep her ashes near me always. We were lucky to have taken photographs that first entire day of her life as family visited with us in the hospital. To go to sleep looking forward to taking her home the next day, only later to be awoken by a back-lit doctor in my sleepy disbelief saying "I need to talk to you about your baby. Something is wrong and we don't know exactly what." began our rollercoaster. Xzendria died being held by Gary and I, with her grandparents and aunt and uncle there to offer support for each of us. We were enlightened by her existence and each day hold her little sister close and tight, appreciating every moment. Hug your children and know their lives are fragile. We love you baby. Your name is that of an angel.
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| Name: Ali Lundmark-Sutton Our child's name: Saige Theresa The date our child was born: 12/04/04 The date we lost our child: 02/14/05 The hospital where our child was treated: Riley Children's Hospital in Indianapolis, IN The physicians who treated our child: Dr. Mara Nitu, Dr. Bysani and Dr. Ahmed Our story: I had been in labor for probably a week before I went to the hospital. It wasn't pain, just pressure...until that last day. By 9:30, Friday night, December 3rd, I couldn't take it. At 11:30, the nurse came in and looked at the fetal monitor. She left the room pretty quick and came back, put me on oxygen and informed me that they were going to have to do an emergency C-Section. Oh boy, did I freak. Saige's heartrate had dropped to 60 and I was only dialated to 2. They didn't want to take any chances, since I still had a long way to go. I had Saige at 2:00am on Saturday morning. She was 8lbs. 1oz. and 20 1/2 in. long. As healthy as can be...or so I thought. The nurses brought her in my room around 11 that day. I was so drugged up, but still held her and tried to feed her. She wouldn't eat. I wasn't sure if that was because I wasn't doing it right, or what. I have 2 neices, one 5 and one 2, and helped with both of them as babies. So, it wasn't like I'd never fed a newborn before. Then I figured that maybe I was just too drugged up. So, the nurse in the nursery tried to feed her and had the same problem. She gagged and just wouldn't eat. She switched her formula and that helped. I guess they thought that was the problem. The next day, Sunday, I called the nursery around 10:30 to have them bring Saige to me. It rolled around noon and they still hadn't. I just figured that they were really busy. It was time for pain killers, so I called down and told them to not bring her, I would call again when I woke up. The nurse who answered told me that another nurse was on her way to talk to me. It wasn't a good conversation. She came in and said that Saige had turned dusky(bluish) in the nursery and they wanted to do a spinal tap on her. I started bawling. Here, my brand new baby, and a "procedure" already. Of course, I allowed it. They admitted her to the NICU and did the spinal. The results came back clear. I was so happy. The doctors ended up diagnosing her with pneumonia. They said this was probably a result of my c-section. The first time I walked in the NICU and saw my precious baby in the incubator with an oxygen hood over her whole face, I could have died. It took a few times before I could handle it. The had her on oxygen for a few days and that was it. She seemed to be fine. I went home on December 7th and they kept her until December 15th, which was when she finished her antibiotics and she came home. I was so excited to finally have her home. I found out after she came home that they had done an echocardiogram on her in the NICU. This was an ultrasound of her heart and lungs. They found the pressures in her lungs to be in the 50's. The normal pressure should have been from 15-20, but because of her pneumonia, they weren't too worried. I had to take her to the cardiologist for a follow-up about a week and a half after she came home. I took her on January 4th and her pressures were still high. Her cardiologist called me and said that he wanted me to get her to Riley Hospital in Indianapolis, IN as soon as possible. That in itself scared the c*** out of me. On January 7th, I took her to Riley Hospital for the first time. The cardiologist, Dr. Ebenroth, from Riley decided to do another Echo on her to check her lungs for himself. He backed up exactly what her cardiologist said. Then came the bad news. He then told me that she might have PPH(Primary Pulmonary Hypertension). It is a lung disorder, which causes high pressures, but is also not curable. So, I said, "Basically you're telling me that if this is what she has, that I have to just sit back and wait for my baby to die?" He answered with the most horrifying answer possible. "YES". I could have dropped right there, but I wasn't giving up without a fight. They admitted her to the heart unit that day and put her on oxygen to see if that might help. The next day, they did another Echo on her and no change in her pressures, but I do think that the oxygen was helping her breathe. I hadn't actually realized how much of a problem she had breathing until then. I started thinking about how she was when she was home. I would feed her an ounce and while burping her, she would fall asleep. I would have to wake her up, after almost every ounce. She grunted all the time. That stopped in the beginning of her being on the oxygen. She actually started eating and sleeping better. I took her home on the 11th of January and had her home for another week and a half. They had me schedule her for a cardiac catheder on January 20th. This was a test where they would knock her out, intubate her and then put a catheder straight into her lungs. They would test her lungs without anything special. Then they would test her on 100% oxygen, and then add Nitric Oxide to the oxygen and see if her lungs react to that. If they would open up at all. If they do, that is a good thing, and then they have a medication to put her on at home. Well, her lungs did react, but not as much as they would have liked. A little was better than nothing. They had decided to keep her for 24 hours for observation. That night, Thursday, she was having problems. I fed her and within 20 minutes, her oxygen saturation, which should be above 90, was dropping into the 70's. About an hour after she ate, it came back up. This continued to happen all that night and the next day. The doctors just decided to stop feeding her. They put in a feeding tube and wanted to see if that would stop the de-sating. They also decided that in a week they were going to try and do a lung biopsy to see if they could figure out what was wrong with her. They wanted to wait a week just to give her time to rest after her cardiac catheder. On Saturday morning, January 22nd, around 7:00AM, I got a, not so nice, wake up call. They were rushing Saige to the ICU. They couldn't get her oxygen to stay up. I was so terrified. They got her there and told me that they were going to have to intubate her to give her higher amounts of oxygen then she could get through the nasal canula. They also told me that they were going to try and put in a central line. This is someting they surgically place that has spots for about 5 different IV's. It is so they don't have to stick her numerous times. They put it in one place and they hook up all the IV's to this one thing. While Michele(my friend who went with me to Riley) and I were in the waiting room, a doctor came in to tell me that Saige was doing worse than when I left her. I asked him if she was going to die and he said that it was possible. I lost it. I just couldn't understand what was going on. They had no idea what was wrong with her and she might die. I didn't know how to deal with that. So, I cried for the next half hour, until the doc came back in and said she was stable. I gave him the biggest hug...probably scared the poor guy. He was an intern. I got to go see her shortly after that. The saddest sight in the entire world. Blood everywhere and my poor baby laying there with tubes coming out all over. Then, I found out that they were going to have to put a chest tube in because when they were losing her, they had to "bag" her. They had to bag her so hard that they blew a hole in her right lung. I was starting to get numb. I was so scared again. They got the chest tube in with few complications. Saige just didn't want to be messed with. That actually became somewhat of a joke between me and the staff. Saige was always, for the most part, fine until someone "messed with her". I used to say, just like her mother. The rest of the day Saturday and then on Sunday, were hard. She was up and down all night and the next day. By Sunday night, they decided that there was nothing else they could do for her. They had given her every medication possible and nothing would keep her stable for long. What was I supposed to do? Her wonderful doctor, Dr. Nitu, then decided that she wanted to try her on steroids. She said that if they would have had the chance to do the biopsy, this was one thing they would have probably put her on anyway, so why not try it now. She said it couldn't hurt. And, she was right. Within an hour after her first dose, she was stable. Then, they came to me with the idea that they need to do the lung biopsy now. They didn't want to wait. They didn't think she could make it too much longer and they knew that only a biopsy was going to give them any information into what was wrong with her. It was so hard to make the decision to do that because they warned me that she could die during the operation. As scared as I was, I had to let them. I then decided to put Saige's life, 100%, in God's hands. It was the weirdest thing, but as soon as I gave God the control, I was fine. I knew in my heart that she was going to come out of the surgery fine. I didn't even cry when I left her room. I was fine the whole two hours she was gone. The doc came to the waiting room to tell me she came through it. I hugged him and told him thank you, but I knew she was going to be fine. He just smiled. Well, as soon as she got back to her room, the problems started again. They couldn't keep her oxygen level up. About three hours after she came out of surgery, another doctor came to me to tell me that he wanted to put her on the ECMO machine. ECMO is Extracorporeal Membrane Oxygenation, which is a heart and lung bypass machine. It gave her lungs and heart a break from having to do any work. Another, oh so scary, decision to make, but an easier one then the biopsy. The doctor told me that if I didn't agree to put her on ECMO, she probably wouldn't live another 2 hours. That was all I needed to hear. I couldn't just sit there and watch her die. Her life was still in God's hands and if it was her time to go, then at least I knew I did everything I could for her. When I left her room, right before they put her on the ECMO, her oxygen sats were in the 50's...she was purple. I wasn't as calm this time, but still not as bad as I would think. Again, she came through. What a fighter Saige was. [/color] Saige's biopsy results back the next day and her Doctor came in the room, so excited. She informed me that Saige was diagnosed with PPHN(Persistent Pulmonary Hypertension of the Newborn), which was curable. I just couldn't believe it. I have never wanted to scream for joy, so loud, in my life. I almsot knocked Dr. Nitu over, jumping up to hug her. She stayed on the ECMO machine for 6 days. That whole week was wonderful. All I could do was think about all the things that I was going to get to do with my baby, that for a short time, I didn't think possible. I started keeping a journal. I wanted to have everything written down, so when Saige got older, I could show her how strong she was and all the nasty things she fought through. She did so well. The day they took her off the ECMO machine, her lungs pressures had gone down into the 40's...they had actually gone over 130, which is very bad. She had to have felt like she was suffocating. Poor baby. Then, the day after she came off of the ECMO machine, Dr. Nitu came in with this horrid look on her face. She proceded to tell me that Saige's initial biopsy results were wrong. She doesn't have PPHN, she has ACD(Alveolar Capillary Dysplasia). But, this one isn't curable. I stared at her with the most intense feeling of numbness that I've ever experienced. How could that be? How could they have been wrong about something like this? I decided to do some reading on ACD and found out that it is a so very rare lung disease. As of now, there are only 116 diagnosed cases in the ENTIRE WORLD. How is this possible? Why my baby? What are the chances? All the questions going through my head. They aren't positive, but they belive that her disease is genetic. She had a 25% chance of recieving both abnormal genes from both her father and I, and she did. I felt so guilty. Here, I went a week beliving that she was going to be fine, and then get smacked in the face with this news. I wanted to hit something. I just kept telling myself and the doctors that God was going to work a miracle. Saige was going to be fine. God brought her this far. He's not going to take her away from me now. I felt that way until the day she passed away. Almost 2 weeks after she had come off of the ECMO machine, she started having problems. Two days before she passed away, her lung pressures were over 100 and the day she passed, her pressures were over 125. I knew that there was nothing else I could do for her...except to stop her suffering. It was another hard decision, but one I knew I had to make, if I love my baby as much as I knew I did. It was again in God's hands and knew that is she was meant to live, he would bring her through this too. At 9:30pm on Monday February 14th, 2005, they took Saige off of her ventilator. 20 minutes later, she passed away in my arms. I was lucky enough to have close friends and family there with me, but nothing could ease the pain I was feeling. I will always love my precious Saige and know that someday I will see her in Heaven. Without tubes and the happy baby she should have been here on earth. [
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| Name: Nancy Lalicon Our child's name: Joneyo Glasgow The date our child was born: July 9, 2004 The date we lost our child: July 21, 2004 The hospital where our child was treated: Women's College, Toronto & Sick Kids Hospital Toronto The physicians who treated our child: ? Our story: It's heartbreaking while at the same time comforting to connect with all these stories of babies and families affected by ACD. It has been 4 weeks now that Joneyo (Jo-jo) passed away. He was my first. He was born healthy, 8 lbs, 6 oz. I had one miscarriage at 12 wks, but was very grateful when I became pregnant again after 6 months. This pregnancy was uneventful except for at week 38 Jojo decided to turn breech after being in position at week 36. We decided to have a ceasarean. He came out and was beautiful. He had inquisitive eyes and a loud, forceful cry . He seemed so alert and looked at his mom and dad when we spoke with him. That first night he seemed fine except for a few things. My sister, who stayed with me that night, was up for most of the night as he seemed aggitated and wailed at times. Since he was weezy I was concerned so we brought it up with the nurses. They gave him salene drops. He often snorted which was we found amusing (which I don't find now since this might have been a sign that something was not right). He also seemed hungry, but when I brought him to the breast it was difficult for him to feed. I thought it was because we were both new at this. There were times when he did calm down and we were able to sleep. The following morning when the pediatrician came around he noticed that Jojo's heart seemed distant and that he looked 'dusky'. They checked his oxygen levels and they were low. They took him down to the NICU. After a few hours we were able to go down to see him. He was given oxygen, and was being monitored. I remember he was given a pacifier which helped him calm down as he didn't like all the wires and tubes. I remember being concerned about the pacifier because I didn't want him to use one until he was much older. When I said hello he wailed and my heart just melted. This is when the roller-coaster ride began and time became warped. They all said they think he'll pull through. He's a big baby and most big babies pull through. I was worried, but was confident that he was in good hands and that we would be back with me soon. The next day (or was it that evening?) I broke down when I saw a cardiologist examining him. We were told that as long as there is no problem with the architecture of his lungs or heart he would pull through. The next day (or later that evening?) he was given nitric oxide, oxygen, morphine, a muscle relaxer and a blood pressure medication. I'm sure he was on other medication which I can't remember of right now. Those pre- and post- numbers which became so important to us were constantly going up and down. At times it looked like he would pull through, but then he would crash, and not come right up to where he was. It was only one time on day two when he seemed like he was doing fine - oxygen levels were stabailizing, they reduced the nitric oxide, and even took him off the muscle relaxler. This is the last time that I was able to see his eyes wide open and see him move his arms around. On day four the doctors told us that they were making preparations to send him to Sick Kids Hospital which was just down the street. He was so sick and frail by this time, they didn't know if he would make it through the transfer. Miraculously he did. And he did well. He was at Sick Kids on day 6. At Sick Kids he didn't do any better. They talked about a lung biopsy to confirm a diagnosis of ACD, but they wanted to wait and see if he would get a little stronger. But when he would crash he couldn't get back up to the same level as before. Finally on day 11, Tuesday, they decided they were going to do the biopsy, but it would have to be done in the NICU unit. Any movement would bring his oxygen levels down and send him crashing. Although we were warned of the possibility of death we decided it was better to know for sure that he had ACD in case we had to make a very difficult decision. On the day of the biopsy, Wednesday, they informed us that they didn't think he would make it through the biopsy based on his condition over the last 24 hrs. We still had a choice on the biopsy, but they were very confident that he had ACD which is fatal. When we asked for their honest opinion on the next course of action if we didn't do the biopsy, they suggested to let nature take it's course. It was a hard decision to make. I had seen with my own eyes how weak and worse my little baby was and I couldn't bare to lose him on an operating table. If he was going to pass I wanted to hold him, and touch him and let him know how much I loved him. I wanted him to go with dignity, not attached to tubes and wires. He was only 13 days old. He deserved the best care I and his community could give him. We had him baptised with all my family around him. I asked for him to be taken off the muscle relaxer to give him a chance to open his eyes and move his arms and legs. He open his eyes a little bit. He passed after an hour off the ventilator. We recently received confirmation that he had ACD. This is a cruel disease. I still haven't come to terms of why this happened to him, to me, and to us. We want to have another child eventually, but don't know when. If others had successful experiences with their babies after this cruel experience please let me know. What steps did you take to prepare for the next baby? I will always love Jojo and miss him so so much. I am grateful to at least have met him and to mother him for a little while.
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