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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