10yrs old Jan 2010-Aug 2010:
In Feb 2010 we had noticed some changes in Jordan. His moods had changed; he wasn’t the happy go lucky boy he had been for years. He was moody and seemed VERY antisocial. He seemed to be getting ill more often but there was no reason for his illnesses. He didn’t seem to be getting colds or flu’s but he would go 2 or 3 days without keeping food down and then he would be fine for a few days. We also noticed at this time Jordan would stare off into space for long periods of time and we could not bring him out of one of these episodes. We had called his paediatrician and made some inquiries but were waiting to hear back. On a Saturday afternoon I talked to Jay and said Jordan hadn’t kept anything down for 3 or 4 days and these episodes seemed to be happening quite often 20+ times a day and I thought it was best we didn’t wait for answers anymore. We needed to take him to emerg. So off we went and of course hours and hours later we were admitted to the hospital. Just as we had expected Jordan had started to have petit mal seizures. He was started on some seizure medication and they ran a bunch of tests to make sure his shunt was working well. We were told the seizures could have started as a progression of his disability, because of puberty or a number of reasons. There was nothing we could do about it but treat the seizures and try and find out why he wasn’t able to eat anything. Jordan had lost almost 10lbs in this short timeframe of 1-2 weeks. He was only 38lbs at 10yrs old to begin with; he couldn’t afford to lose weight. The doctors told Jay and I Jordan’s stomach could be failing and we should prepare for anything. I had many friends come and spend countless hours at the hospital with me so that Jay could focus on the other children and make sure their school work was not hurting and they knew they still had their parents support for anything. Jay and I had long talks and cried many times and we always finished our talks with we will deal with whatever Jordan needs us to together and as a family. The shunt tests all came back ok and once the seizure meds started working Jordan started eating and keeping food down. There was nothing wrong with his stomach he just wasn’t feeling well from the seizures so he wouldn’t eat and when he did he would throw up. After a week of being in the hospital we were happy to go home and be a family again. It was a rough week but we once again made it through. We kept Jordan home from school for 3 weeks to make sure the meds were starting to work and he was gaining some weight back. Jordan was very tired and slept most of these 3 weeks. Slept and ate lots. Jordan and Zander have become buddies, well as close to buddies as they can be with Jordan still wondering if we are going to take Zander back for a refund. Zander cries when Jordan gets on the bus in the mornings and Jordan tries to pull Zander’s hair. Zander is a bald baby with just a little fuzz. They sure are cute together though.
Jordan had a pretty good spring and summer he gained back all of the weight he lost in Feb. and March and he was happy to be back in school after the summer vacation. In late Sept 2010 on a regular sat night I was going to bath Jordan before bed and give him a snack. I asked Travis to go sit with Jordan for a minute. Travis came back and said Jordan was shaking and choking. Jay and I ran to see what the matter with Jordan was and he was having a grand mal seizure. We put the 3 boys in the van and drove to the hospital as fast as we could. Jay dropped Jordan and me off at the hospital and he came home to wait for Samantha to get home. I told him I would call as soon as the seizure has stopped. We walked into the emergency room and the doctors immediately started to give Jordan dose after dose of adivan to try and stop the seizure. After 45 minutes I asked the doctors why it wasn’t stopping and what else could they do to help Jordan. The doctor looked at me and said he was doing everything he could and they had to make sure they didn’t give him too much medication too fast. After 50-60 min the seizure had finally stopped. The doctors and nurses looked exhausted. Poor Jordan had 6 IV’s in that time and many doses of adivan and dilantin. He too was exhausted. I had a friend show up to keep me company as I had called Jay and told him everything was fine and Jordan just needed to sleep. I told Jay to stay home and get some rest and make sure the other 3 kids got rest as I had no idea if we were being admitted or if we would be discharged in several hours. Jordan slept and slept, the ER doctor was amazing he came in and talked to me every half an hour and made sure we were ok, he checked on Jordan often and finally he said we might as well take him home to sleep off the meds and the after effects of the seizure. Again we left with little to no information though. Jordan has an appointment on Oct 18 2010 with his neurologist so maybe then we will find out some answers. We know Jordan’s life expectancy is not great and we know every minute we get with him is a minute we cherish but some kind of answers would be nice some day. I think 10 years proves I have been patient.
This is our special family, we love them all and we welcome all of our friends into our home as if they are part of our family. I am writing this so we have something to look back on when Jordan is no longer with us and we can remember all of the parts of his life. I want all of our friends to read and enjoy Jordan’s journey as painful as parts of it were and are going to be. He is a strong lil man and he gives me strength in ways only I might understand. We have been to battle together as a family and we will continue to fight. I have not always had the support from some people who should have been there but as I see it, it is their loss not to be involved in someone as special as Jordan. It is not every day we can say we have seen an angel and I believe I get to see that every day within Jordan. As all of our close friends and family knows Jordan fell in love with Movies and TV at the hospital when he was 1 yr old and he still loves TV and movies. Jordan has his own TV and DVD player in his room and he loves to sit and watch and he laughs and squeels in delight.
Meda J
Sunday, October 24, 2010
Jordan's Journey- 2yrs-10yrs
2yrs old -10yrs old:
From 2yrs old until 10yrs old Jordan was very healthy and didn’t have any shunt issues or feeding issues. He continued the diet of pureed foods with added calories such as cream and butter and pediasure. When Jordan was just over 2 years old I had started dating a wonderful man named Jay. He truly loved me and my children and understood all of the health issues that came with us. Jay was always there for the children and myself. Jay said when our relationship started to get more serious that he wanted to marry me and my children, he wanted to have them as his own children and take care of them as he would his own. He was truly a great friend and I think that is why we fell in love with him. Jay moved in with us in the summer of 2002 and other than a few day trips to the hospital for Strep Throat and Ear infections Jordan was healthy for several years. In the winter of 2003 Jordan went through a tough time gaining weight, he continued to struggle to thrive and gain any weight. At 3 years old almost 4 he only weighed 22lbs. This winter Travis went through his second major heart surgery so Jordan spent some time at CPRI where they cared for him while we spent some time caring for Travis. Within a week after Travis’ surgery we were all back home caring for each other. Jay’s family was so great with my children, they accepted all 3 of them as part of their family and Jay’s dad was especially close with Jordan. They had a bond like no other; they could both make each other smile like no one else could. May 27 2005 Jay’s father passed away and it was devastating for the whole family and I think even today Jordan still remembers his papa. In October of 2005 Jay and I were married as a family, we had Samantha, Travis and Jordan as our wedding party and we had a family ceremony. We were getting married as a family after all not just a couple. In June 2009 we welcomed a baby into the family, baby Zander came home and this was quite an adjustment for Jordan. He had always been the baby and he was not fond of children that were smaller than him or that cried. It was a long and I mean long...many year decision to have another child but we did it and we wouldn’t trade it for the world. Jordan grew accustomed to Zander being in the house but every time we got into the van to go somewhere Jordan always looked into the infant car seat and looked at Jay or I as if to say “oh that thing is coming with us again”. We figured it would just be a matter of time before Jordan would understand the baby was not going away and he was here to stay.
From 3years old until Feb 2010 Jordan was seemingly healthy. He had flu’s and colds but just the same sort of thing every child goes through. Sometimes Jordan’s immune system left him weak and pretty ill from normal illnesses, he would lose weight and regress quickly if he was sick but we always managed to nurse him back to good health.
From 2yrs old until 10yrs old Jordan was very healthy and didn’t have any shunt issues or feeding issues. He continued the diet of pureed foods with added calories such as cream and butter and pediasure. When Jordan was just over 2 years old I had started dating a wonderful man named Jay. He truly loved me and my children and understood all of the health issues that came with us. Jay was always there for the children and myself. Jay said when our relationship started to get more serious that he wanted to marry me and my children, he wanted to have them as his own children and take care of them as he would his own. He was truly a great friend and I think that is why we fell in love with him. Jay moved in with us in the summer of 2002 and other than a few day trips to the hospital for Strep Throat and Ear infections Jordan was healthy for several years. In the winter of 2003 Jordan went through a tough time gaining weight, he continued to struggle to thrive and gain any weight. At 3 years old almost 4 he only weighed 22lbs. This winter Travis went through his second major heart surgery so Jordan spent some time at CPRI where they cared for him while we spent some time caring for Travis. Within a week after Travis’ surgery we were all back home caring for each other. Jay’s family was so great with my children, they accepted all 3 of them as part of their family and Jay’s dad was especially close with Jordan. They had a bond like no other; they could both make each other smile like no one else could. May 27 2005 Jay’s father passed away and it was devastating for the whole family and I think even today Jordan still remembers his papa. In October of 2005 Jay and I were married as a family, we had Samantha, Travis and Jordan as our wedding party and we had a family ceremony. We were getting married as a family after all not just a couple. In June 2009 we welcomed a baby into the family, baby Zander came home and this was quite an adjustment for Jordan. He had always been the baby and he was not fond of children that were smaller than him or that cried. It was a long and I mean long...many year decision to have another child but we did it and we wouldn’t trade it for the world. Jordan grew accustomed to Zander being in the house but every time we got into the van to go somewhere Jordan always looked into the infant car seat and looked at Jay or I as if to say “oh that thing is coming with us again”. We figured it would just be a matter of time before Jordan would understand the baby was not going away and he was here to stay.
From 3years old until Feb 2010 Jordan was seemingly healthy. He had flu’s and colds but just the same sort of thing every child goes through. Sometimes Jordan’s immune system left him weak and pretty ill from normal illnesses, he would lose weight and regress quickly if he was sick but we always managed to nurse him back to good health.
Jordan's Journey- 3mths-2yrs
3 Months old – 2yrs old:
I was in an abusive relationship and had little to no support from my husband at the time. It was very difficult for my children and I. I was trying to give Jordan everything he needed to survive as well as provide for my other 2 children and make them feel that mommy was still there for them.
At 3 months old Jordan has been going to see the neurosurgeon every other week to have the CSF (cerebral spinal fluid) measured in his skull. They had finally decided he needed to have the shunt surgery. Jordan was given a VP shunt on his left hand side of his brain. We were told that his ventricles in his brain were very small and this could lead to blockages happening in his shunt so we had to measure his head once a week and he had continued follow up visits with the neurosurgeon. Jordan was in the hospital several weeks for this surgery and recovery. When surgery was over Jordan had very large dips in his skull where his plates hadn’t been able to close properly due to the excess CSF, I made sure he always had a hat on as I did not want to answer questions from every person we saw. I took Jordan with me, he was never left out but sometimes I just wanted to go outside the home and have a normal outing with my kids. It was hard to make time for Samantha and Travis, I often asked Sam if she felt I spent enough time with her, she always replied “you are so busy with Jordy mommy I love you and we will get to spend time once he is better”. Even at 7 years old she was much wiser than some adults I know, I know she needed me but she didn’t want to hurt my feelings.
Although we had at least 1 doctor or specialist appointment per week for Jordan from 3 months old until 1yr old he was fairly healthy during this time. He was gaining weight very slowly and was not gaining muscle tone at all. He started physiotherapy and occupational therapy at 5 months old. At 10 months old we went to see an optometrist that specialized in optical deformities in the brain. He had done several tests and told us that Jordan would eventually see that his optical part of his brain had suffered some damage from the encephalocele but over time it would bounce back and he would have vision although the doctor did not know how long this would take I was optimistic. Jordan celebrated his 1st birthday and we all celebrated as we did not think he was going to make it that far. He was a seemingly very happy boy and he sure was a fighter.
When Jordan was 15 months old I had noticed he woke up one morning and was very lethargic and the artificial fontanel was bulging and pulsating. We went straight to the emergency room where Jordan went through tests including MRI, CT scan, Shunt-o-gram and x-rays to find out he had a blockage in his shunt and it was malfunctioning. This meant surgery within a few hours. Jordan was given an IV and he was in surgery by 5am the next morning. Jordan woke up from surgery and seemed to be doing well in the PICU (paediatric intensive care unit) so he was sent to his own room in Children’s Hospital of Western Ontario. After a week of recovery we had noticed Jordan was developing a fever and was very lethargic again. They ran all of the shunt series tests again and the shunt was fine. With some blood work we noticed he has a very high white blood cell count so he had an infection somewhere. The doctors examined him and could not find the infection. They withdrew some CSF and tested it. There was the infection. Jordan had got a staph infection from something in the operating room. The infection was in his CSF, brain and running through his shunt. The doctors then ordered a high dose of antibiotics to be given by IV for 5 days. Once the antibiotics were completed we went home with a follow up visit in 2 weeks. When we went to the follow up visit Jordan had not had any fevers or any signs of still having the infection. They withdrew some CSF from the shunt and sent it to be tested. The infection was still there; over the next few days he became very ill and was admitted to the hospital again. He went through another surgery for a shunt revision. Over the next month Jordan had CSF drawn every few days and the infection was getting worse. He was seen by an infectious disease specialist and put on many different antibiotics both orally and IV. Jordan was then sent back to surgery where he had another shunt revision and an external drain put in to drain all of the infected CSF from his brain and shunt. For the next month he had several surgeries for new external drains and shunt revisions. A total of 7 surgeries were done that summer and 15 weeks spent in the hospital. The most comforting thing Jordan had in the hospital was TV, the nurses would put on the TV for Jordan while I was out spending time with the other childrenor doing day to day running around. Jordan fell in LOVE with TV and movies that summer. That September he was released from the hospital at 20 months old weighing only 13lbs but clear of any infection. That was my clue to move myself and my children to London to be close to the hospital. During these 15 weeks I had left the abusive relationship with my husband and Jordan`s father, moved over 1100Kms and tried doing everything I could to help Jordan get better as well as still be there for my other 2 children. Some days I look back and wonder how we ever came through it but we did. I was often at the hospital alone or accompanied by my mother as she was always there to support me. My mother has spent so many hours at the hospital and doctors appointments with me. We always thought it was better to have 2 sets of ears instead of 1 and I couldn’t count on anyone else to be there. My dad came to the hospital as much as he could to be there for Jordan and me but he knew mom was there and she gave him daily updates. I had many friends come to the hospital and stay with me for hours on end but I think most of them felt helpless and didn`t know what to do or say. How someone can call themselves a father and not be there even once for his child during something like this is beyond me but it sure made me feel like I had made the correct decision by leaving that relationship.
Jordan was followed by neurosurgery every 6 months for the next 2 years. With only 1 more shunt revision in that time. He was also hospitalized due to his failure to thrive and seen by a dietician. His caloric intake was close to 3000 calories a day and yet he was not gaining much weight. At 2 years old Jordan went through several feeding and swallowing studies and he was booked for surgery twice for a G-tube. Both surgeries were cancelled due to Jordan getting the flu just hours before surgery. When the feeding and swallowing study was done again he was swallowing well on his own and was no longer aspirating 50% of his intake. We had dodged that bullet. Jordan vomited often and this was due to his swallowing issues. He was put on pediasure which is a high calorie drink like formula, and everything he was eating was pureed as he would choke on any food with textures.
I was in an abusive relationship and had little to no support from my husband at the time. It was very difficult for my children and I. I was trying to give Jordan everything he needed to survive as well as provide for my other 2 children and make them feel that mommy was still there for them.
At 3 months old Jordan has been going to see the neurosurgeon every other week to have the CSF (cerebral spinal fluid) measured in his skull. They had finally decided he needed to have the shunt surgery. Jordan was given a VP shunt on his left hand side of his brain. We were told that his ventricles in his brain were very small and this could lead to blockages happening in his shunt so we had to measure his head once a week and he had continued follow up visits with the neurosurgeon. Jordan was in the hospital several weeks for this surgery and recovery. When surgery was over Jordan had very large dips in his skull where his plates hadn’t been able to close properly due to the excess CSF, I made sure he always had a hat on as I did not want to answer questions from every person we saw. I took Jordan with me, he was never left out but sometimes I just wanted to go outside the home and have a normal outing with my kids. It was hard to make time for Samantha and Travis, I often asked Sam if she felt I spent enough time with her, she always replied “you are so busy with Jordy mommy I love you and we will get to spend time once he is better”. Even at 7 years old she was much wiser than some adults I know, I know she needed me but she didn’t want to hurt my feelings.
Although we had at least 1 doctor or specialist appointment per week for Jordan from 3 months old until 1yr old he was fairly healthy during this time. He was gaining weight very slowly and was not gaining muscle tone at all. He started physiotherapy and occupational therapy at 5 months old. At 10 months old we went to see an optometrist that specialized in optical deformities in the brain. He had done several tests and told us that Jordan would eventually see that his optical part of his brain had suffered some damage from the encephalocele but over time it would bounce back and he would have vision although the doctor did not know how long this would take I was optimistic. Jordan celebrated his 1st birthday and we all celebrated as we did not think he was going to make it that far. He was a seemingly very happy boy and he sure was a fighter.
When Jordan was 15 months old I had noticed he woke up one morning and was very lethargic and the artificial fontanel was bulging and pulsating. We went straight to the emergency room where Jordan went through tests including MRI, CT scan, Shunt-o-gram and x-rays to find out he had a blockage in his shunt and it was malfunctioning. This meant surgery within a few hours. Jordan was given an IV and he was in surgery by 5am the next morning. Jordan woke up from surgery and seemed to be doing well in the PICU (paediatric intensive care unit) so he was sent to his own room in Children’s Hospital of Western Ontario. After a week of recovery we had noticed Jordan was developing a fever and was very lethargic again. They ran all of the shunt series tests again and the shunt was fine. With some blood work we noticed he has a very high white blood cell count so he had an infection somewhere. The doctors examined him and could not find the infection. They withdrew some CSF and tested it. There was the infection. Jordan had got a staph infection from something in the operating room. The infection was in his CSF, brain and running through his shunt. The doctors then ordered a high dose of antibiotics to be given by IV for 5 days. Once the antibiotics were completed we went home with a follow up visit in 2 weeks. When we went to the follow up visit Jordan had not had any fevers or any signs of still having the infection. They withdrew some CSF from the shunt and sent it to be tested. The infection was still there; over the next few days he became very ill and was admitted to the hospital again. He went through another surgery for a shunt revision. Over the next month Jordan had CSF drawn every few days and the infection was getting worse. He was seen by an infectious disease specialist and put on many different antibiotics both orally and IV. Jordan was then sent back to surgery where he had another shunt revision and an external drain put in to drain all of the infected CSF from his brain and shunt. For the next month he had several surgeries for new external drains and shunt revisions. A total of 7 surgeries were done that summer and 15 weeks spent in the hospital. The most comforting thing Jordan had in the hospital was TV, the nurses would put on the TV for Jordan while I was out spending time with the other childrenor doing day to day running around. Jordan fell in LOVE with TV and movies that summer. That September he was released from the hospital at 20 months old weighing only 13lbs but clear of any infection. That was my clue to move myself and my children to London to be close to the hospital. During these 15 weeks I had left the abusive relationship with my husband and Jordan`s father, moved over 1100Kms and tried doing everything I could to help Jordan get better as well as still be there for my other 2 children. Some days I look back and wonder how we ever came through it but we did. I was often at the hospital alone or accompanied by my mother as she was always there to support me. My mother has spent so many hours at the hospital and doctors appointments with me. We always thought it was better to have 2 sets of ears instead of 1 and I couldn’t count on anyone else to be there. My dad came to the hospital as much as he could to be there for Jordan and me but he knew mom was there and she gave him daily updates. I had many friends come to the hospital and stay with me for hours on end but I think most of them felt helpless and didn`t know what to do or say. How someone can call themselves a father and not be there even once for his child during something like this is beyond me but it sure made me feel like I had made the correct decision by leaving that relationship.
Jordan was followed by neurosurgery every 6 months for the next 2 years. With only 1 more shunt revision in that time. He was also hospitalized due to his failure to thrive and seen by a dietician. His caloric intake was close to 3000 calories a day and yet he was not gaining much weight. At 2 years old Jordan went through several feeding and swallowing studies and he was booked for surgery twice for a G-tube. Both surgeries were cancelled due to Jordan getting the flu just hours before surgery. When the feeding and swallowing study was done again he was swallowing well on his own and was no longer aspirating 50% of his intake. We had dodged that bullet. Jordan vomited often and this was due to his swallowing issues. He was put on pediasure which is a high calorie drink like formula, and everything he was eating was pureed as he would choke on any food with textures.
Tuesday, October 5, 2010
Jordan's Journey- In the Beginning
Pregnancy to 3 Months old:
It all started in the winter of 1999 and I was pregnant and due in March of 2000.I had no idea Jordan was going to be born with the special needs he has on Jan 2nd 2000 at 25 weeks pregnant my water broke at work and I went to the hospital. I was put on bed rest in the hospital and not allowed to even get up to pee for the remainder of my pregnancy. My cervix was stitched shut and I was given steroids in case the baby was born early it would strengthen his lungs and other organs. As the doctors were trying to figure out why my water had broke they started to find health issues with my unborn baby. I had already had every test possible while I was pregnant because of my other son’s heart issues the doctors wanted to make sure this baby was healthy. In doing some more tests such as an MRI, amniocentesis and many ultrasounds I was told many things were wrong with my baby. I was scared and wondered if he would make it through the birthing process, what if I didn’t love this baby because of his health issues, what if he didn’t look like I thought a baby should look like, I was thinking and feeling every horrible thought a mother should never have to think but I couldn't stop. The fear of the unknown was getting the best of me and when I had seen pictures from MRI's of my baby I wondered how would I react to seeing a tumour like thing on the back of his head that was bigger than his head itself. I was depressed and just wanted to be alone in my hospital room to deal with whatever came my way. The doctors were very vague with the information they were giving me and they were trying to prepare me for the worst. I was told Jordan might not make it through the birthing process if he was delivered vaginally so he would be a c-section when they felt the time was right and I was far enough along in the pregnancy. My family was supportive and family and friends came to visit me often in the 3 weeks after being admitted to the hospital. Jordan was doing great and the doctors were happy with his growth until I was 28 weeks pregnant and I started to contract. I had contractions for 3 days and complained to the doctors that something was happening but they kept assuring me that I was fine and NOT in labour. By the time the doctors realized I was in labour I was 9cm dilated and they had to do an emergency c-section. I was put to sleep and Jordan was born all in a matter of 3-4 minutes. When I woke up in the recovery room the nurse was there for me and she was very nice, she said my husband had just shown up and he wanted to see me. He came into the recovery room and said he had seen the baby and that he believed he was going to be fine and that he was going home. The nurse told him perhaps he wanted to stay with me and wait until I was awake fully and go to the NICU with me to see Jordan and talk to the doctors but he said no he just wanted to leave, he couldn’t handle being there. I was so drugged up I didn’t care if I was alone or not I just wanted to see my baby and make sure he was ok. I asked the nurse to put me in a wheelchair and take me down to the NICU to see Jordan but she said I needed to rest a little longer and once I was in my room the nurses would take me to see him. I waited and was sent to my own room about 45 minutes later and I buzzed the nurse to see if she would take me to the NICU to see my baby. She told me I needed to rest and the doctors were working on Jordan and I could see him in the morning. I was on morphine to combat the pain of the c-section and I thought I could do anything. I got up out of bed and walked hunched over down to the NICU, I was determined to see my baby boy. The nurses in the NICU met me at the door and got a wheelchair right away and helped me into see Jordan. I cried the second I saw him, he was beautiful. He looked like a tiny beautiful baby bird.
Jordan was born 12 weeks premature and he had it tough right from the beginning. He was a large baby for being so premature; I believe he was so big due to the steroids I was given for the last 3 weeks of my pregnancy. He was born on Jan 19, 2000 at 9:37pm weighing 1976 grams or 4lbs 3oz. He was the cutest baby in the NICU with his head wrapped in gauze and his UV shades on to protect his eyes from the UV lamps. I was so scared every time I went to the NICU to see him that the doctors would have bad news for me. All of the doctors were so great they told me what they could and were honest if they did not have answers. I was told Jordan would not likely live past a few weeks old because all of his disabilities and medical conditions. He spent some time in the NICU at St Joseph’s hospital before being sent to Children’s Hospital of Western Ontario. In the first 3 weeks of his life he was not allowed to eat by mouth he was only tube fed through a NG tube. He had his first surgery to remove the encephalocele from the back of his skull at 3 days old. This was much like a large tumour that needed to be removed. The doctors said it did contain some brain tissue but not much and they wouldn`t know how that would affect Jordan`s development until further on in his life. A second surgery to close the hole in the back of his skull was done at 1 week old and it was not a success so Jordan lives with an artificial fontanel (soft spot) on the back of his head. The doctors were not able to close the hole because Jordan had some swelling due to hydrocephalus and it could have caused major issues if they had of closed the hole. I had blown several stitches in my c-section from being stubborn and walking around doing things when I was supposed to be resting but, I was determined to see my baby boy and to help him even if it meant sacrificing myself. He dropped down to 1406 grams or 3lbs 1oz as he was without food for almost a whole week during the surgeries. But he was a fighter. I had been pumping breast milk and freezing it at the hospital hoping that one day he could have it. The nurses in the NICU and the nurses on the ill infant nursery are angels and they do everything they can for both the patient and family. He was then fed through the NG tube for a few weeks. At 6 weeks old they finally told me I could try nursing him. He was a PRO. That boy was born to eat. He was sent home so that I could care for him and I underwent training to feed him through the NG-tube 50% of the time and breastfeed him the other 50% of the time. It was not an easy time as I had 2 other children that needed me and they needed attention from their mommy. I had after all been gone to the hospital for a total of 2 months by this point. I was welcomed home by the children and they were happy to have their baby brother coming home. Jordan`s father was less than supportive of Jordan coming home but he was happy to have me home to cook, clean and care for the other children. I think he was a bit overwhelmed by the whole situation since he hadn`t been at the hospital during my stay or Jordan`s he didn`t know what to expect when we came home. After a month of breastfeeding Jordan 50% of the time and feeding him through the NG tube 50% of the time that the doctor decided we could remove the NG-Tube and he could be breastfed the whole time.
We were discharged from the hospital with 4 nurses that came to the home and a public health nurse that was coming to weigh him 3 times a week. Nobody could tell us at that time what the outlook for Jordan would be; he had already surpassed everyone’s expectations.
Jordan was fully diagnosed at 2 weeks old with a repaired encephalocele, hydrocephalus, complete Agenesis Corpus Colosum, failure to thrive, 2% muscle tone and he was legally blind at that time as well. It was stressful and I was dealing with so much but I wanted to be there for my son no matter what it took. Thank goodness I had great family and friends that could help care for Samantha and Travis.
It all started in the winter of 1999 and I was pregnant and due in March of 2000.I had no idea Jordan was going to be born with the special needs he has on Jan 2nd 2000 at 25 weeks pregnant my water broke at work and I went to the hospital. I was put on bed rest in the hospital and not allowed to even get up to pee for the remainder of my pregnancy. My cervix was stitched shut and I was given steroids in case the baby was born early it would strengthen his lungs and other organs. As the doctors were trying to figure out why my water had broke they started to find health issues with my unborn baby. I had already had every test possible while I was pregnant because of my other son’s heart issues the doctors wanted to make sure this baby was healthy. In doing some more tests such as an MRI, amniocentesis and many ultrasounds I was told many things were wrong with my baby. I was scared and wondered if he would make it through the birthing process, what if I didn’t love this baby because of his health issues, what if he didn’t look like I thought a baby should look like, I was thinking and feeling every horrible thought a mother should never have to think but I couldn't stop. The fear of the unknown was getting the best of me and when I had seen pictures from MRI's of my baby I wondered how would I react to seeing a tumour like thing on the back of his head that was bigger than his head itself. I was depressed and just wanted to be alone in my hospital room to deal with whatever came my way. The doctors were very vague with the information they were giving me and they were trying to prepare me for the worst. I was told Jordan might not make it through the birthing process if he was delivered vaginally so he would be a c-section when they felt the time was right and I was far enough along in the pregnancy. My family was supportive and family and friends came to visit me often in the 3 weeks after being admitted to the hospital. Jordan was doing great and the doctors were happy with his growth until I was 28 weeks pregnant and I started to contract. I had contractions for 3 days and complained to the doctors that something was happening but they kept assuring me that I was fine and NOT in labour. By the time the doctors realized I was in labour I was 9cm dilated and they had to do an emergency c-section. I was put to sleep and Jordan was born all in a matter of 3-4 minutes. When I woke up in the recovery room the nurse was there for me and she was very nice, she said my husband had just shown up and he wanted to see me. He came into the recovery room and said he had seen the baby and that he believed he was going to be fine and that he was going home. The nurse told him perhaps he wanted to stay with me and wait until I was awake fully and go to the NICU with me to see Jordan and talk to the doctors but he said no he just wanted to leave, he couldn’t handle being there. I was so drugged up I didn’t care if I was alone or not I just wanted to see my baby and make sure he was ok. I asked the nurse to put me in a wheelchair and take me down to the NICU to see Jordan but she said I needed to rest a little longer and once I was in my room the nurses would take me to see him. I waited and was sent to my own room about 45 minutes later and I buzzed the nurse to see if she would take me to the NICU to see my baby. She told me I needed to rest and the doctors were working on Jordan and I could see him in the morning. I was on morphine to combat the pain of the c-section and I thought I could do anything. I got up out of bed and walked hunched over down to the NICU, I was determined to see my baby boy. The nurses in the NICU met me at the door and got a wheelchair right away and helped me into see Jordan. I cried the second I saw him, he was beautiful. He looked like a tiny beautiful baby bird.
Jordan was born 12 weeks premature and he had it tough right from the beginning. He was a large baby for being so premature; I believe he was so big due to the steroids I was given for the last 3 weeks of my pregnancy. He was born on Jan 19, 2000 at 9:37pm weighing 1976 grams or 4lbs 3oz. He was the cutest baby in the NICU with his head wrapped in gauze and his UV shades on to protect his eyes from the UV lamps. I was so scared every time I went to the NICU to see him that the doctors would have bad news for me. All of the doctors were so great they told me what they could and were honest if they did not have answers. I was told Jordan would not likely live past a few weeks old because all of his disabilities and medical conditions. He spent some time in the NICU at St Joseph’s hospital before being sent to Children’s Hospital of Western Ontario. In the first 3 weeks of his life he was not allowed to eat by mouth he was only tube fed through a NG tube. He had his first surgery to remove the encephalocele from the back of his skull at 3 days old. This was much like a large tumour that needed to be removed. The doctors said it did contain some brain tissue but not much and they wouldn`t know how that would affect Jordan`s development until further on in his life. A second surgery to close the hole in the back of his skull was done at 1 week old and it was not a success so Jordan lives with an artificial fontanel (soft spot) on the back of his head. The doctors were not able to close the hole because Jordan had some swelling due to hydrocephalus and it could have caused major issues if they had of closed the hole. I had blown several stitches in my c-section from being stubborn and walking around doing things when I was supposed to be resting but, I was determined to see my baby boy and to help him even if it meant sacrificing myself. He dropped down to 1406 grams or 3lbs 1oz as he was without food for almost a whole week during the surgeries. But he was a fighter. I had been pumping breast milk and freezing it at the hospital hoping that one day he could have it. The nurses in the NICU and the nurses on the ill infant nursery are angels and they do everything they can for both the patient and family. He was then fed through the NG tube for a few weeks. At 6 weeks old they finally told me I could try nursing him. He was a PRO. That boy was born to eat. He was sent home so that I could care for him and I underwent training to feed him through the NG-tube 50% of the time and breastfeed him the other 50% of the time. It was not an easy time as I had 2 other children that needed me and they needed attention from their mommy. I had after all been gone to the hospital for a total of 2 months by this point. I was welcomed home by the children and they were happy to have their baby brother coming home. Jordan`s father was less than supportive of Jordan coming home but he was happy to have me home to cook, clean and care for the other children. I think he was a bit overwhelmed by the whole situation since he hadn`t been at the hospital during my stay or Jordan`s he didn`t know what to expect when we came home. After a month of breastfeeding Jordan 50% of the time and feeding him through the NG tube 50% of the time that the doctor decided we could remove the NG-Tube and he could be breastfed the whole time.
We were discharged from the hospital with 4 nurses that came to the home and a public health nurse that was coming to weigh him 3 times a week. Nobody could tell us at that time what the outlook for Jordan would be; he had already surpassed everyone’s expectations.
Jordan was fully diagnosed at 2 weeks old with a repaired encephalocele, hydrocephalus, complete Agenesis Corpus Colosum, failure to thrive, 2% muscle tone and he was legally blind at that time as well. It was stressful and I was dealing with so much but I wanted to be there for my son no matter what it took. Thank goodness I had great family and friends that could help care for Samantha and Travis.
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