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| Name: Jo Taylor and Chris Coe Our child's name: Alexander Taylor Coe The date our child was born: 8th May 2011 The date we lost our child: 17th May 2011 The hospital where our child was treated: Great Ormond Street, London, UK The physicians who treated our child: Dr Ellen Rawlinson and many many more Our story: Alexander Taylor Coe was born on Sunday 8th May 2011 at 21.33 on his due date at Princess Royal Hospital in Haywards Heath, West Sussex, England. I’d had quite a few bleeds during my pregnancy but no-one seemed worried by this and it was put down to one of those things. No abnormalities showed up on the 2 scans we had and although I had monitoring at 36 weeks for lack of movement, all was OK and I went on to be full term. After a 22 hour labour, I had an emergency c-section and my partner Chris came and showed me our son Alexander for the first time. All was fantastic for the first hour and Chris was proudly walking around the room cuddling Alex and showing him off. Just after we got into the Recovery Room, I took a picture of Chris and Alex and noticed that Alex looked very grey. As I was just about to say this, the Midwife looked up, gasped and ran out the room with Alex and started to resuscitate him outside our room. As I still had no movement in my legs from the c-section, I could not move but Chris was trying to see what was happening to Alex. They managed to get his colour back quite quickly and he was taken to the Special Baby Unit at the end of the corridor for oxygen and monitoring. Throughout the rest of the night, we were told Alex was being monitored and a Consultant from Brighton had come up to look at him. It was decided that Alex had to go to the Neo-Natal unit in Brighton and so he was taken in a Nitric Oxide Incubator and we followed on hours later. On arrival at Brighton, it became quite clear how sick Alex was. At this point, we were in complete ignorance as no one had seemed worried – something now I am very grateful for as we could not have got to Alex any quicker. Dr Cathy Garland came to see us on arrival and sat on the floor in tears saying she had done all she could and the team from Great Ormond Street were on their way and that Alex needed to go on ECMO immediately otherwise he would die. Our Rollercoaster ride had begun. Alex and Chris went in the CATS ambulance on a high speed dash from England's South Coast to central London and I followed in another ambulance to be taken to a nearby London Hospital where I had been admitted to due to my c-section. I managed to get myself discharged almost immediately (on a promise to come back the next day for my medicine) and went to Great Ormond Street (GOSH) to be with Chris and Alex. Alex was put on ECMO immediately and we were found a room for a few hours rest in the CICU ward as they felt sorry for us and no proper bedrooms were available at 1am! The next morning, the battle began and we were very optimistic for Alex’s survival after having read leaflets on ECMO’s success and we were determined that Alex would be one of those statistics too. GOSH have flats and bedrooms for the families of every child in their 3 Intensive Care Units – something that we had never even considered before we found ourselves on this rollercoaster so we were able to stay up in London with Alex to be there with him every minute we could. After 3 days on ECMO, we got to see Alex awake for the first time since he was born. His night nurses had made his hair all spiky and had decorated his headband holding his cannulas in with stickers so Alex looked like a little Rock Star – a name we have come to call him! It was so lovely to see our little fighter so awake and holding our fingers so tightly. After 5 days on ECMO, there was concern with his chest drain bleeding and so it was decided he should be taken off to see how he would be. At this stage, like most other cases on here, it was suspected that Alex had PPHN and that ECMO hopefully had rested his lungs enough for recovery. He came off fairly easily and was then put on the oscillating ventilator and seemed to be OK on that for 2 days. Alex’s oxygen stats then started dropping again and after a stressful night and 2 ventilators later, he stabilised again. Alex really didn't like Mondays! On the 9th day of his life, it was suggested by Aparna, one of the Consultants on that day, that Alex should have a lung biopsy. The Doctor’s told us that they just wanted to rule out a very rare lung condition but were pretty sure it wasn’t that! Alex got through that operation with no concerns and we were allowed to go back and see him as soon as the operation was finished. Sadly that evening, the results came back and it was confirmed that Alex did have ACD and there was no more that could be done for him. Luckily family were on their way up to visit and so we all got to say goodbye for the last time. Despite such a brave and courageous fight for life, Alexander’s fate had been sealed at conception. We are so grateful that we got to spend 9 precious days with our little Rock Star but just wish it could have been a lifetime more. Our friends and family have done us proud and we have so far raised over £3000 for Great Ormond Street Hospital and hope to raise more in future for GOSH and the ACD Association. This can then hopefully be used to help try and find further information on ACD; develop pre-natal testing; and one day to be able to eradicate ACD completely. Chris and I are currently about to have Genetic testing in the UK to see if we have the FOXF1 mutation.
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| Name: Diane D'ALLesandro Our child's name: Dominic Jacob D\'ALLesandro The date our child was born: March 31, 2011 The date we lost our child: April 21, 2011 The hospital where our child was treated: Bay Medical, Sacred Heart, and Shands The physicians who treated our child: Dr. Fontin,Dr. Tim and Dr. Kay Our story: At five month we were told that our son would not be healthy. There was something wrong with his heart, fluid in both lungs, as well as in one of his urine tubes, I as well was holding extra fluid around him. I was seeing the dr every two weeks till I was enduced 3 weeks early. He was fine the 1st few hrs then put on oxygen. He seemed to go up and down on his oxygen levels. After 4 days they said he had to go to a bigger hospital. A hospital in which he only spent the night. That morning the Dr Tim told us that had to fly him to a hospital with ECMO, drs there would check him to see if he would have to be put on or not. By the time we got there he was already on the ECMO. Our son nearly made it there. Our son seemed to be getting better. There came a point when ECMO was doing nothing for him any more. He would get worse anytime they would try to take him off. On April 20 we were told that they had found he was missing corm. 16 as well as many others only being half. Something they already believed it would be. On April 21 our son was taken off everything. We ( my husband, my 2 yr old, Dominic, as well as myself) give blood and let them have a piece of his lung. We hope that by this they can find a piece of the puzzle. Dominic had our family, churches, friends, and many strangers some we have meet and some we may never know. All praying for him. Although he passed, to us he is still our little mericle. It's amazing how one little baby who only lived 21 days brought so many together.
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| Name: Laura Perez Our child's name: Dominic DAllesandro The date our child was born: 3/31/11 The date we lost our child: 4/21/11 The hospital where our child was treated: St Jude, Flolrida The physicians who treated our child: not sure Our story: Dominic was my nephew/God son. My sister learned something was wrong when she had her ultra sound at 5months as time went on they felt they needed to treat him soon not nowing what was wrong he was born at 8months. he was born in Florida and tranfered to a hospital with an ECMO machine. Doctors ran test and after 2 1/2 weeks told my sister and brother in-law he had ACD. All the prayers and hopes for a mirical could not save him. His parent had to face the worst desition. He has left a huge hole in our hearts. I'm very sorry about you daughter. It is very sad that no one ever knew about this untill it happen to us. What you are doing is amazing.
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| Name: Brookelynn Niles Our child's name: Tristan Russell Zozaya The date our child was born: January 3rd 2011 The date we lost our child: January 18th 2011 The hospital where our child was treated: Banner Thunderbird and Phoenix Childrens Hospital The physicians who treated our child: Dr. Guiterrez, Dr. Carballo Our story: At my gender ultrasound at 18weeks pregnant I found out I was having a boy. At my following routine Drs. appointment my Dr. had told me that they were concerned after viewing the ultrasound that my sons kidneys were enlarged and they were going to refer me again for another ultrasound. The next ultrasound done 1 month later showed that my sons kidneys were enlarged and that it was nothing to be too concered about but should be watched and I was scheduled for routine ultrasounds and NST(non stress tests) every 4weeks. Now that my son was bigger, at the next ultrasound the Dr. was able to notice abnormality with his intestines and would need surgery to correct after birth. Around 31wks. I went into triage complaining that I felt really anxious and shakey. As a routine, they hooked me up to the fetal monitors and they showed I was contracting regularly. They gave me the shot and performed a test to see if I would deliver in the next 2wks and checked if I was leaking any amniotic fluid both tests were negative and after the shot the contractions stopped and I was sent home. Few days later at the next Drs. appt. I complained the contractions were coming all the time and the Dr. said that she could put me on a medication but the medication has worse side effects then just dealing with the contractions so I denied. I was back in the hospital a few days later with frequent contractions, 1 shot to stop contractions and 1 shot for steriods(incase baby decided to come early) and I was sent home. December 31st, I was back in triage where they gave me another shot to stop contractions and ran the test to see I was leaking fluid, test came back positive and I was admitted and given the second set of steriod shots and would be induced later on. Contractions stopped and they gave me an ultrasound to see if the levels of fluid had dropped or rised. The ultrasound showed the levels had not changed and that I most likely had a "high tear" that was small and probably sealed over and they decided it was in Tristan's best interest to not induce me, I was later sent home. January 3rd, I was at my routine ultrasound/NST appt. NST showed frequent contractions and they performed the amniotic test which showed I was leaking fluid again and I was readmitted and induced that night. Dr. broke my water and I flooded the whole labor and delivery room. At 10:59pm January 3rd, 2011 Tristan Russell Zozaya was born vaginally weighing 4lbs 9oz and 183/4 inches long. Right when I saw him I started crying that he was so tiny. I heard his little cry for a brief moment before they intubated him and for a second I held him while the nurses hand bagged him, he was the color of snow, so pale. They rushed him to the NICU where they put him on the oxygen ventilator. Later that night I saw him. He looked so much better, he wasn't so pale anymore he even looked a little jaundice. I was released 2 days later and it was so very hard leaving without him. Overnight they put him on the nitric oxide ventilator. I didn't realize just how bad things were really becoming until the next day my boyfriend and I were getting ready to go shopping for more baby supplies when we got a call from the hospital saying Tristan was placed on the jet ventilator and his stats were dropping and we needed to come to the hospital to determine the next step. Both families met where the Dr. discussed that there was nothing more they could do at Thunderbird that he needed to be transported to Phoenix Childrens and that's when he introduced ECMO, that it was Tristan's last hope. Our daughter Arianna,2yrs. was able to see her brother for the 1st time incase it was the last time. We ofcourse agreed and Tristan was airvaced and placed on ECMO. Seeing him for the first time on that machine made me weak in the knees and my stomach turned just looking at him. Over the next few days Tristan's stats were great and I sat there as the nurses kept checking his blood gases and were all so proud and that night they took him of ECMO. I was able to sleep that night. They gave him lasixs to lose the extra water weight. He went from 4lbs 9oz to around 6lbs from being on ECMO. They were able to take him off of almost all medicines and I was able to hold him for the 1st time, I never wanted to let him go. He looked so clean of all the wires, He never looked better. Drs. were already discussing on taking him off of the oxygen ventilator and how many weeks they thought it would be before he got to go home. they were all so impressed with how far he came from the time he first arrived. The next hurdle was his bowel surgery which was performed 3days after coming off of ECMO. The 2hr. surgery became 3 and as I was in the waiting room I was anxious. The nurse kept coming out and I was stressing to her asking if they had found more problems she kept reassuring me that everything was ok. After the surgery the Dr. came out and had told me that I had a very interesting little boy, nothing was in the correct spot, his stomach was turned which they fixed, his appendix was removed because he could become very sick and nobody would know why because it was in a weird position and her biggest concern was that he had no gallbladder which then we learned about a rare disease called Biliary Atresia which is a clog in the bile ducts from the gallbladder to the liver. She also said it could also mean nothing at all because people can live without gallbladders, they are removed all the time. It would just be something they would look into after he was healed from the surgery. I visited him every day all day and when I wasn't I was constantly calling and anytime the phone rang my stomach would drop in fear that it was bad news. A few days after I called to check on him as routine like always and they told me they had to put him back on nitric and had put him on blood pressure medication again. I knew after all the ups and downs that this was only the beginning of another big fall down. I went to the hospital where Dr. Guitterrez told me Tristan was a fighter that he took 3xs the amount of sedation medicine to put him to sleep that he kept fighting all the ivs. Few hrs. later Tristan's stats dropped in the 50s and was having to be hand bagged as the ventilators were not enough and the Drs. talked about putting Tristan on ECMO for the 2nd time, this time it would be directly to his heart as they cannot reinsert through his neck, I agreed. I knew he didn't want to give up. The canulas were inserted successfully and right away his stats rised. I then had him baptised. I went into a depression coma and couldnt get out of bed. I started having a high fever and had to go into the hospital and I bawled my eyes out and refused to sit in the middle of the ER with a bunch of rude people coughing pnuemonia everywhere in fear I would get sick and not be able to visit Tristan. I made a Drs. appt and found out I had a common breast infection from pumping called mastitis and was given antibioitics. The following day I got the worst news of my life, the Drs. were telling me that Tristan was really going downhill, that the right side of his heart was failing and he was potentially having organ failure. They asked if it came down to it would I opt for resusicitation and we agreed that that would not be a good idea with his sternum being open due to the ECMO canulas. When I got there he was hooked up to so many ivs. They had him on paralysis and sedation medicine. We spoke to a chaplan who came in and said prayers and I was able to hold him for the last time. Surrounded by family everybody touched him. They clamped the cords of the machine where Tristan took one last look at me and closed his eyes to forever rest in peace. For being here for such a short amount of time Tristan touched the lifes of both families. He was so strong for being so tiny. I held my son in my arms for a short time but I hold him in my heart forever. I love you son, always and forever.
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| Name: Angela Riley Our child's name: Ava Grace The date our child was born: 3/2/11 The date we lost our child: 3/12/11 The hospital where our child was treated: Texas Children\'s Hospital The physicians who treated our child: Multiple Doctors Our story: Our baby Ava was born in Methodist Hospital a term baby via C-section at 2 in the afternoon. She was chunky and pink when she was born with no apparent health issues. She was 8 lbs 14 oz and slightly hypoglycemic as is the case with many big babies at birth. They gave her a little glucose and she perked right up. She was a normal little baby when they brought her to us in the room a couple hours later. My husband, myself, my daughter, mother-in-law and best friend all passed her around and took pictures that evening. I nursed her a bit and everyone headed home to return in the morning. I am an ER nurse and I noticed she was a little dusky but the lights were dim and I didn't notice any other signs of respiratory distress other than she was a little lethargic. I took the pulse ox off my finger and popped it on her toe. It read 100% and the pulse was correlating with her apical pulse. I was worried she might be hypoglycemic again so I called the nurse in the nursery to see if they might check her sugar again. When the nurse came to get her she brought her into the bright light and I saw the instant look of concern on her face as she rushed Ava back to the nursery. I was in my room feeling helpless as the spinal was still in effect and I still could not move the lower half of my body. The next thing I know is that the nurse practicioner is in my room telling me that Ava's sats were below 50 and they did not know why. They had her on oxygen and were transporting her to Texas Children's Hospital right next door. My heart dropped and I immediatly called my best friend and husband and told them to turn around and come back and to go to Texas Children's to be with Ava. They worked on Ava all night and it just seemed like one thing went wrong after another. As I sat helpless in my bed with my husband calling me to update me on what was going one each call seemed worse than the last. First she was placed on a ventilator, then she had a pneumothorax, then a chest tube, then they were unable to cannulate her two vessel cord so they finally got a PICC line in. Then she was on dopamine. I sobbed as I know what it means when all these things are happening to babies we work on in the ER. They are dying. She seemed to stabilize for a couple hours and my friend, also an ER nurse decided to leave my husband with Ava and head to work. No sooner than she left my husband called me frantically, Ava was crashing again and they wanted to put her on ECMO. Of course we agreed. What else could we do, she was going to die without it. She remained on ECMO and was stable but her pulmonary hypertension did not turn around like they thought it would. Finally, a couple days later than what they though Ava began to do better. Her chest x-ray cleared up and she passed her trial off ECMO so they decided to take her off of it. She did good the 1st day off and was so alert, opening her eyes and looking at us, tracking her doll when we held it in front of her and squeezing her Daddy's finger so tightly and with such strength. We could not only see but feel her strong spirit. For the next few days we watched and waited but she just never got better. The last day of her life her sats just continued to drop further and further down. We signed a DNR. She had been through so much already and stayed by her side. That night after hours of sats in the 50's we decided to take her off the ventilator and end her suffering. She breathed her last breath in my arms as her Daddy sang to her. They diagnosed here post mortem with a lung biopsy with ACD. And that is the short story of the life of our sweet baby Ava.
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| Name: Simon and Amelia Ashwell Our child's name: David Fazlollah Upeksa The date our child was born: 4th March 2011 The date we lost our child: 19th March 2011 The hospital where our child was treated: The James Cook University Hospital, Middlesbrough and The Freeman Hospital, Newcastle upon Tyne, UK The physicians who treated our child: Jonathon Wiley (JCUH), Jane Cassidy and Lee Ferguson (FRH) Our story: David, our first child, was born as a normal delivery at term without any know complications (3.6kg/ 7lbs14oz). His Apgar score was 9 at 1 and 5 minutes. He had no problems in the first 24h, passing his baby check the morning after his birth with oxygen saturations (Sa02) of 98%. We all left hospital approx. 24 h after delivery and David was mostly asleep that day, not interested in feeding much but we didn’t think much of it. He woke up as soon as we turned off the lights on his first night at home and had what I would assume to be a fairly normal 2nd night for a newborn with some crying and a little feeding, but lots of falling asleep on mum’s chest, where he loved to be. In the middle of the night however, he woke with a loud, violent and inconsolable cry, which was unusual for him, and wouldn’t feed. He then started grunting, which concerned us a little, but we thought we were just being anxious new parents. The grunting settled after 5-10 min and he fell asleep again. The following morning, the midwife came to visit us and we were trying to get him to feed well when he started the same violent crying following by grunting. The midwife was concerned and arranged for David to be assessed immediately by the paediatric team at The James Cook University Hospital, Middlesbrough (JCUH). Of course, as soon as we arrived there he had settled, though the grunting lasted around 40-50 minutes this time. His Sa0¬2 were initially around 50% but he didn’t look cyanosed (blue) and they soon came up to mid 90’s spontaneously and the early low reading were put down to cold hands and feet. The admitting paediatrician examined what seemed to be an essentially normal 2 day old baby by this stage and, while finding no significant abnormality suggested a few hours of observation. This turned out to be a good idea as 2-3 hours after his admission he had another violent cry and then became cyanosed. His Sa02 were in the mid 50’s and didn’t pick up with 100% O2. It was at this stage where I realised (as a physican) that there was something seriously wrong with David and the nightmare rollercoaster described by some many unfortunate parents before us began . He was whisked to the resus room and then PICU and started on Prostacyclin infusion as the team thought he had congenital heart disease with right-left shunting. He was intubated, ventilated, arterial and central lines were placed and he was transferred to The Freeman Hospital Newcastle for an echo and paediatric cardiology assessment. We were so relieved when he arrived safely and were then told that there was nothing wrong with his heart. We were told he had persistent pulmonary hypertension of the newborn (PPHN) and that it would resolve spontaneously in a few days with Nitric. The PICU Consultant (Lee Ferguson) told that there were other causes of this type of problem but that they were so remarkably rare that we needn’t worry about them. David stabilised on Nitric he was transferred back to JCUH the following night. We were so pleased that he was coming closer to home and would soon be cured. However, the rollercoaster was only just setting off. The next day Jonathon Wiley at JCUH was concerned about David’s pulmonary artery pressures which didn’t seem to be coming down and his blood pressure and oxygenation was difficult to control. We had that awful conversation that so many people on this site have had of being told he may have an untreated underlying condition. We were devastated. David was transferred back up to The Freeman Hospital for consideration of ECMO. For a 5th night in a row we were up all night as he was transferred back up to Newcastle. But again our anxieties were relieved to some extent when Jane Cassidy on PICU stabilised David with some suction and surfactant and his Sa02 was miraculously 100% again. Our optimism declined over the next 2 days as he became unstable with frequent dips on Sa02 despite being on, by now,adrenaline, prostin, sildenafil, nitric, in addition to the sedation and paralysing drugs. In view of this he was put onto venous-venous ECMO, with our hopes at a low. However, this allowed us to hold him, see him looking stable, avoid anxious monitor-watching and go home for some sleep. His pulmonary artery pressures dropped and we thought that at last he was on the road to recovery. He came of ECMO easily, but again became unstable with high oxygen and nitric requirements. He thus had a chest CT scan which showed some non-specific ground glass changes, and then went on to have a lung biopsy. The night after the lung biopsy we hit rock bottom when he again had a severe dip in Sa02 and had to have ECMO restarted while we awaited the biopsy result. The surgeon who put in the ECMO cannulae (V-A this time) told us he had only needed to reinsert ECMO cannualae 6 times and none of the children had survived. The following day (24h after the biopsy) Jane Cassidy told us the news we had been dreading,that the lung biopsy had confirmed that David had ACD. She offered us the option of considering lung transplantation but after a long and difficult discussion we decided it was not in David?s best interests to do so. The following day, David?s ECMO cannulae were removed, he was extubated and my wife and I held our beautiful 15 day-old son in our arms, as we?d been aching to do for so long, but this time it was as he died.We are of course desperate to have other children but in addition to grieving David?s loss we are anxious about the possibility of them being affected. David had blood taken for genetic analysis and we are waiting to see a geneticist. So far, however, the lack of information about the risk to future children is difficult for us to deal with. We would like to thank everyone who has posted their stories on this site. Reading them has helped us a great deal. Thanks also to those who set this up ?we hope that as a physician and academic researcher we may be able to help soon. And to the JCUH and FRH medical and nursing teams who looked after David- his care was faultless.
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| Name: Amanda Seamons Our child's name: Kailie Marie The date our child was born: November 26, 2010 The date we lost our child: December 16, 2010 The hospital where our child was treated: Primary Childrens The physicians who treated our child: Nolan Our story: My boyfriend previously posted for our daughter. We found out the results of her lung biopsy this morning. She did have ACD. She would be 8 weeks old today.In a way the results have given me closure, but know I don't know about the future. What are the chances of this happening to us again? I love my angel baby.
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| Name: Dawn & Kenneth Earle Our child's name: Ellis The date our child was born: 27,09.2009 The date we lost our child: 19.10.2009 The hospital where our child was treated: South Tyneside General Hospital The physicians who treated our child: Dr Ockabenny Our story: Ellis was born 2 weeks over due, following a trouble free pregnancy. He was a georgous little boy who spread so much joy through his family. The midwifes and the health visitors were pleased with his progress, putting on a good amount of weight with being a breastfed baby. He started to become unwell at 17 days, refusing his feeds and generally not settling as he previously did. We went through a very sleepless night, with Ellis only taking very little feed and his nappys were becoming dryer which concerned us greatly. In the morning our nightmare began, Ellis started to go blue and fight for his breath, we immediately called the local A&E who despatched a paramedic immediately. On his arrival he immediately gave Ellis oxygen which brought his colour back but he was still fighting for his breath. Ellis was rushed into hospital A & E department, xrays were taken along with bloods, they were unable to give him oxygen straight away as equipment was defunct or had been mislaid so one of his doctors ran with him immediately to the Childrens ward where they put him in a oxygen box. They needed to take a spinal fluid sample so we were taken an put in a side room, they said they needed to rule our meningitus, this came back negitative. They eventually made Ellis more comfortable and transferred him onto the childrens ward. They swapped machines back and forward all day, his stats went up and down, eventually he settled and his breathing started to become more normal but doctors were still not happy with his progress and decided to put him on a machine that would force more air into his lungs. He was only on the machine for a few minutes when he stopped breathing altogether. Doctors and nurses worked two hours to try and bring him back but were unsucessful, he died in our arms with his grandma at his side. Many of his family came to the hospital to help us say goodbye. Six months after Ellis's passing we received his post mortum results from his consultant, he advised that Ellis had ACD, a little known condition in which he has had to research. Many people came to say goodbye to Ellis and nearly £2000 was raised to hospital unit where he was treated. We miss our little boy every moment of every day, love you Ellis, Mammy & Daddy xx
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| Name: Steven Bearden Our child's name: Kai Marie seamons- bearden The date our child was born: 11-26-2010 The date we lost our child: 12-16-2010 The hospital where our child was treated: Primary Childrens medical center NICU slc UT The physicians who treated our child: brook( fellow) and all the top NICU docs Our story: little Kai was born around 5:30 on 11-26-2010 she was taken from her mommy earlie because they thought she wasn't growing and apered to be under weight. She was born vaginaly weighing 5.5 lb ( aprox. 2400 kilos) birth went great and the NICU was on standby due to concerns of underweight. well she came out WeIghing more then anticipated, NICU was let off standby at that point, one of the nurses noticed a slight heart rhythm drop for a few minutes. Kai was then taken to the nicu and realesed about 20 minutes later with all her stats back to normal and her heart was doing it's job. It was so exiting that she was ok. Amanda and I were then transferred up to the newborn nursery area were we got a room and our Babie was there trying to breastfeed. she wasent very interested and by that time, kai had gone to the nursery to get a bath. We got her back and tried to breastfeed again one more time before we attempted to sleep. Kaia nurse came in to routinely check her and Kai was a little on the cold side so she went back to the nursery to get warmed up, at about midnight Amanda felt like something was wrong with Kai, she went and checked on her in the nursurey and immediately raised a concern, Kai looke purple/blue. They put her on the spo2 and her saturation was at 70. Kai then was back in the NICU. She responded well to mild doses of oxygen and a tiny bit of nitric oxide, they thought she had pneumonia and very mild and limited pulmonary hypertension, ( she was rapidly developing severe polmenary hypertension and her stats weren't stable for long, the had to keep going up on ventilation therapy and nitric and oxygen. She coded several times and was getting chest comparative at least 4 different times, then ECMO was introduced to us and that she needed to go to primary Childrens asap. Kai and I went there in a ambulance and once we got there she stabilized and ECMO was not started, the next day her stats took another nose dive and ECMO was givin, when installing the ECMO setup the machine malfunctioned and had to wait for another machine to be set up. They got done installing the canualsvand the Venus I believe had came loose or positioned incorrectly so the ECMO was pumping in more blood then pulling out, our little Kai filled to her max and looked like a little sumo Babie before the problem was corrected. Then her bodie started to blister from all that fluid. It was so hard to see her like that and the doctors had already told us that the outlook wasn't looking very good. Little Kai faught and faught. She started to do a 180 and got most of her blisters healed and most of her fluid out. Still on ECMO the system started getting very fiberouse and clots were forming. The changed the circuit on the ECMO machine and she kept her stats up were they needed to be. A day and a half after the circuit change, it started getting very fiborus and a large clot was detected ( they were able to get the large clot out sucessfully, 2 days later she was able to come off ECMO completely and her stats were exelent, her oxygen and nitric and all her meds were being weined down and she was doing great, at that point we were so exited that our Babie was actually going to come home one day! She got off of ECMO on 12-8-2010. ( a total of 9 days on ECMO) she was our little warrior princess and a real fighter. She was stable and down on alote of therapy for 3-4 days and Amanda and I were actually sleeping back at home and not so confined to the NICU. That didn't last long and she again begun to drop stats and needed to go back up on her therapy and reached maximum therapy very quickly, they really didn't have to many answers other then the pulmonary hypertension was back with vengeance. Also maybe some sort of an infection but all cultures came back negative. The then talked to us about acd a little mOre and with a little more depth. And the FICA said that she fits the description but would need a lung biopsy to confirm. Our little warrior was starting to fill back up with fluid because her blood pressure loved the volume, they needed to get her on lasiks to get the extra fluid off, yesterday they attempted a new i v. Even though she was on morphine and paralytics the second they tried sticking her she began to crash. That was early in the morning I watched her stats roller coaster while her mommy was pumping breast milk. Kai was filling back up and when they were able to give lassies in the past few days she didn't really respond. The doctors asked if they could take a small non invasive way to get part of her lungs to get it tested for cad. amanda and I then decided( with the doctors help and advice) that we couldn't let Babie Kai fill back up on fluids and crash if they tried to take some lung. We had a planned removal of therapy for 9 am on 12-17-2010 and was getting everything in order that we needed too. Within 2 hours of deciding that kai's stats begun to roller coaster again with her oxygen levels never reaching above 95 for over a split second her saturations were hanging from 70-85 for 4 days now. We decided we had better hurry so we get a chance to control her removal and removed her from all therapy on 12-16-2010 and she passed away at around 7 30 pm. We are very saddened from this outcome but comfortable with our decision because my little Kai angel was suffering spiritually. Her will to live was the most amazing thing I have ever experienced on my life along with many many others her spirit touched. After she passed we allowed them to take parts of her lung and intestine so we could know if she had acd or not. if she doesn't have it then the acd foundation will stil get our support. We are very thankful for your website and the information we have learned from it so far. It helps to know were not alone out here. With love, angel kai, jayleb her big brother. Amanda, and steve.
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| Name: Luana Our child's name: Isaiah Anthony The date our child was born: July 25, 2010 The date we lost our child: July 30, 2010 The hospital where our child was treated: Sick Kids Hospital The physicians who treated our child: Dr. Sivarajan Our story: Isaiah Anthony was born on Sunday July 25th, 2010 at approximately 2:30pm. He was 8 pounds and 4 ounces. Isaiah was going to have to fight no matter what. Isaiah was diagnosed with a minor heart defect and enlarged kidneys in the uterus. We were advised that each was treatable. My wife and I faced some difficult decisions at this point. After careful reflection and with the guidance of Isaiah’s grandparents, we decided to give our son every possible chance at life. Little did we know that these difficult decisions would be just the beginning. After Isaiah’s birth, he appeared to be a healthy baby. However, within a few hours, he began to grow fussy. Nothing worked to calm Isaiah down and finally a nurse at Mount Sinai noticed something and decided to check his oxygen level. It was low and dropping by the second. Isaiah ended up being taken to the NICU at Sick Kids Hospital. In the NICU, the doctors tried everything for almost two days to get his oxygen levels up. Everything the doctors tried worked initially but became less effective as time went on. Isaiah’s oxygen level would inevitably begin it’s slow descent. Each rise and fall in his oxygen level was mirrored by a rise and fall in our hopes. After the doctors in the NICU had exhausted all medicinal options, we were given one final, risky, surgical option. We could either let our baby boy go or we could essentially place him on a life support machine. At this point, the doctors knew that the issue was with his lungs but had no diagnosis and therefore were only treating his symptoms rather than the cause. The life support was to stabilize Isaiah and give the doctors enough time to come up with a diagnosis. Even if the surgery itself was successful, there would still be ongoing life threatening risks associated with being on the machine and its accompanying medications. The decision to place Isaiah on this machine was another difficult one, but again we decided to give our son every chance at life. Once again and for the rest of Isaiah’s short life, our hearts were filled with an unbearable mixture of hope and fear. Isaiah survived the surgery and was then transferred to the CCU at Sick Kids Hospital. He would spend the remainder of his life there. We were informed that in order to diagnose what was wrong with him, he would have to undergo another risky surgical procedure on Thursday morning. The doctors needed a lung biopsy in order to make a diagnosis. The doctors made it clear that this was their last option and depending on the results, there may be some more difficult decisions to make. The doctors ensured that at least, preliminary results would be ready on Friday. If not we would have had to wait until the following Tuesday. Having to wait a day in this situation is bad enough, it would have been almost unbearable to have to wait four. Once again Isaiah survived and after a few tense hours in the morning, my wife & I were able to spend one good day with our little one. For one day, we were able to put everything out of our minds and focus on Isaiah. We took turns touching, talking, reading and singing to him. The first story he heard was “Love You Forever” by Robert Munch. A poem from this book touched us and we put a variation of it on his plaque. It reads: “We’ll love you forever, We’ll like you for always, As long as we’re living our baby boy you’ll be.” Friday morning, we made our way back downtown and back to the CCU. After speaking to the doctor, we were informed that final results of the lung biopsy would be ready later in the afternoon. This was not good news. Previously, the doctors had explained that the faster the results came back, the worse the news was likely going to be. In spite of this, we spent the morning touching, talking and reading to Isaiah. Finally at 3:30pm the doctor came to see us and let us know that the final results were ready. The doctor informed us that Isaiah had an extremely rare and incurable lung disease. We were advised that there was no way to detect the disease while Isaiah was still in the womb. As a result, the life support machine was no longer prolonging his life. It was prolonging his death. We made the decision to take Isaiah off life support that same day. Every care was taken to ensure that Isaiah wouldn’t suffer once he was removed from life support. Before the machine was disconnected, my wife, surrounded by family, held Isaiah in her arms. During this time, a pastor gave a blessing and said a prayer. My wife continued to hold our baby boy and rocked him while the machine was turned off. Isaiah further showed his strength and will to live as he continued to breathe on his own for three more hours. We like to think that Isaiah wanted each of us to hold him one last time before he left. On Friday July 30th at approximately 11:30pm, Isaiah passed away. He died in my arms, with his mother sitting next to me and surrounded by family. Isaiah started his new journey peacefully, quietly and forever with our love. Finally, our baby boy could rest.
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