KALEMSMOM
06-01-2008, 10:43 PM
Kalem’s Story
Kalem (our little miracle) was born on March 6, 2005. My pregnancy had a few complications and we had several ultrasounds and he seemed to be a perfect healthy baby. We didn't know his sex because we wanted a surprise (both boys were surprises). My water broke at exactly midnight on March 6th and we rushed to the hospital, I was 35 weeks pregnant so I knew that he was early. Getting to the hospital I was almost 6cm dilated and he was breech. They rushed to do an emergency c-section, Kalem was born weighing in at 5lbs5oz and 17inches long. He was screaming with all his might. His blood sugars were low but other than that he seemed perfectly healthy, small but a good size for his gestational age.
The following day after the pediatrician looked him over I asked her about his head shape, it seemed odd and not nice and round like my other son was. She mentioned that it was probably from the birthing process. I told her that he was born via c-section due to him being breech. Later that afternoon she came back and told us that my baby had a condition that I had never heard of and never wrote it down for us so I couldn't recall what she said because I was in a state of shock. She told us that our baby was going to be "mentally retarded", will need several open brain surgeries and we will never know what his life will be like. She stated that we will watch and see how he progresses. She stated that she would see me next week in her office. My husband and I were devastated but yet ready to do whatever we needed to do for the little person that had just come into our lives who we instantly fell head over heels for.
I got home 4 days later and the first thing I did was googled fused skull and found craniosynostosis. There were so many kinds and once I found pictures it was clear that Kalem was Metopic, he looked so much like all the other babies. After reading case by case and joining a forum called craniokids.com it became clear to me that this could be corrected with surgery. Major surgery but yet this condition was treatable. We cried for days my husband and I from seeing pictures of children during and after surgery but it was clear to both of us that Kalem had trigonocephaly and had Metopic synostosis. We went to our follow-up appointment with Kalem to the pediatrician and mentioned what we had discovered. She stated that we would wait and see as he got older. I asked her to send us to a specialist and she felt like there wasn't a need for it. I was very frustrated with her.
Being the mom that I am, I once again googled to see if I could refer myself or find a specialist. I wanted a second opinion. I found the neurologist Dr. James Rutka at Sick Kids and e-mailed him directly with pictures of Kalem's head, I told him that I was almost 100% certain that Kalem was Metopic and that our pediatrician wouldn't refer us as she felt there was no need. He responded at 7:02 am the following day and mentioned that he too felt Kalem was Metopic from the pictures but would need to see him for diagnosis. He mentioned that his secretary would be in contact with us shortly. She called me that day to setup and appointment with him and the craniofacial surgeon as well as a CT scan. Kalem was diagnosed on March 29th, 2005 at Toronto’s Sick Kids hospital. We met both Dr's who would be performing his surgery; they explained to us in detail the surgery and the circumstances. They told us that he was moderate to severe and they recommended surgery. They informed us that he would grow up to be a happy normal child. That was music to our ears.
The wait for the surgery was extremely long, not one day passed by that I didn't worry. The date was for December 19th, 2005. The Dr's recommend to do this surgery between the ages of 10 to 12 months as the child's skull is still growing quickly but not as quick as prior to one year. The skull is still very soft at this point and is easier to work with. Kalem was going to be almost 10 months old at the time of the surgery.
December 19th came faster than what we were prepared for. We left for Toronto on December 18th and left behind our almost 3 year old son who we never left alone prior. He was staying at our house with his grandma and grandpa (Moe's parents). That alone was added stress to both of us. We had celebrated Christmas and opened up our presents on December 17th with the whole family. Since this was Kalem's first Christmas I wanted it to be special and not in a hospital. We also felt that he may be in pain so we wanted to do the celebrating before because we knew that there wouldn't be any celebrating for a little while afterwards. Daddy had made us matching cranio T-shits. We had a big Christmas dinner and it helped ease the stress a lot for everyone. We were surrounded by friends and family who we loved dearly. They really helped us get through this rough patch. Once in Toronto on December 18th I barely slept because all I wanted to do was hold and kiss Kalem's little triangular head. I knew it would be the last I would see of it. Daddy and I just held each other and cried because we were so scared. This was the first time him and I had ever felt this kind of scare in our lives.
The following morning came and we dressed Kalem in little sick kids scrubs that we had purchased. We were both sick to our stomachs and scared out of our wits. We could barely speak as tears would flow our eyes. They came to get us at 7:40 to go to the OR waiting room. At 7:51 an OR nurse came to get Kalem, he had peacefully fell asleep in my arms. I handed him over to the nurse ever so gently as tears of fear flew down my cheeks. Moe and I held on to one another as we watched the nurse take our baby away.
Hours went by until we got an update, finally the volunteers informed us that all was going well and there were no complications thus far. About an hour later at approx. 11:30 I went to express some milk. Upon my return down the hallway I could see Moe anxiously waiting and looking for me (he didn’t know where the nursing station was for pumping milk). My heart started to race as I could see him crying and I immediately thought something was wrong. He told me they were done, while I was gone his craniofacial Dr had come out to tell us everything was o.k. and the surgery was a success. He warned us that he looked VERY different and to be prepared for the big change. He said we may not recognize him. We anxiously waited in the waiting room for them to tell us when we could come see him. At 12:51 we got to wash up, put a gown on and go visit Kalem. When we walked in, it was very emotional he was hooked up to every tube, wire, monitor you could think of. He had IV’s coming from every limb. He looked so different, so much like his older brother and he had a round head. It was amazing!!! Moe and I cried and finally hugged with a sigh of relief that it was over and that soon we could take our baby home and heal. While they were transferring him from the recovery room to NICU we weren’t able to be there so we got a bite to eat and called everyone.
Upon our return, we waited to go see him in NICU. Once there he was crying so I calmed him and talked to him, sang to him. He seemed like he was in severe pain, they reassured me that he wasn’t. The nurse who was going to be with him for the next 12hrs straight without leaving his sight not even for a second explained in detail what every line was for and every machine and what it monitored. As she was about to give him more meds, Kalem started shaking, foaming from the mouth and his heart rate dropped to zero, basically our little man was coding. She pushed the big red button and over 30 nurses and Dr’s came running to his room with crash carts and machinery. They had to send us out of the room and it was devastating, just typing this is very difficult and tears are pouring down my cheeks. Nurses set us outside the hall, reassured us and gave us chairs to sit down as our knees became weak and faint. Then we heard cries and I knew that was a wonderful sign. Moe and I had never felt so many emotions in such a short time. The thought of losing our child was one I never thought would come upon us. Those few moments felt like hours. After I don’t know how much time, the Dr’s and nurses started leaving his room, we were allowed to re-enter. Both surgeons came up immediately to assess him. A CT scan was ordered immediately to see if there was any brain damage or any tears on the derma. They also had a cardiologist come and examine him to ensure there were no undiscovered issues with his heart. All tests came back normal and Kalem’s brain looked perfect. His heart rate continued to drop every so often throughout the next 24hrs. They decided to keep him in NICU for an additional 24hrs to ensure that his heart rate stabilized. The Dr’s came to the conclusion that Kalem had a severe reaction to the anesthesia. As Dr’s explained it to us, during major surgery the anesthesia used is like a cocktail of different medications, to pinpoint what actual cocktail that Kalem reacted to is next to impossible. If and when Kalem needs further surgery they will ensure to take extra precautionary measures to ensure his safety.
Kalem continued to recover from the surgery and his declines in heart rate slowly dissipated. There were fewer incidents. The swelling really kicked in 24hrs later, his eyes were slammed shut and he couldn’t see anymore. He slept a lot. It was difficult to know when he was awake because he couldn’t open his eyes. Mommy got to finally hold him after 48 hrs. It was hard and difficult because of all the tubes, IV’s and monitors but it felt soooo good to hold my baby boy. He seemed to enjoy it as well. Mommy and daddy spent a LOT of time, talking to him, singing to him and reading to him. He responded very well to our voices and it amazed us on how he would turn towards the voice speaking. I had to give him water to start for his first feeding and if he kept that down I was able to nurse him. The first time I got to nurse him felt incredible, he was so happy to suckle and it seemed like it completely soothed him from his pain. If he got irritable or cranky, I would nurse him and he felt better and was more content. The power of mother’s milk was incredible; it soothed him better than codeine.
On day 3 we got to give him a bathe and walk around with him, they said that the more he sat upright, the faster the swelling would go down so we walked, and walked with him. As we walked around we could see children that were battling cancer and fighting for their lives. It was sad to see all the sick children. As much as we went through a nightmare I couldn’t imagine what the parents to those children were going through. My heart felt for those families. I prayed that they would all eventually return home safe and sound and cancer free.
Kalem was doing amazing. He started eating solids again and even though he couldn’t see we would give him Cheerios and he would find them in our hands. He was too funny. I missed his baby blues and couldn’t wait to see them once again. Today was a hard day because when I called Loic he started crying and asking us when we were coming home, he told me that he missed me, papa and Kalem. He sounded so hurt and scared, he broke my heart. I knew he was in good hands but I so longed to touch him. This had by far been the toughest days of my life both physically and emotionally. I long to go home but I know that we need to ensure Kalem is safe to go. If only the swelling could go down. We will be going home in a few days. I am so scared that something will happen but I can’t wait to get him into his own bed
We were on day five and the Dr’s said that we could go home, Kalem’s eyes were still closed, he was drinking and eating and seemed to be feeling fine. Moe and I both felt like we should wait one more day for his eyes to open and be examined. As much as we wanted to go home, we just didn’t feel comfortable leaving without his eyes being examined. Christmas Eve was here and still Kalem didn’t open his eyes. The Dr’s reassured us that it was o.k. to go home. If we had any concerns or questions to call the emergency on call Dr in the craniofacial department. We wanted to get home so we accepted to leave. So off we went. We headed home with a baby that didn’t even resemble the same baby we had brought to the hospital a few days ago. The drive home was difficult but we took our time. We finally arrived home and we were overjoyed from seeing Loic. He was ecstatic to see us as were we. He was a little afraid of Kalem but we explained to him again what happened and he felt really bad and gave his bobo a kiss. He was so sweet and gentle with Kalem. We spent a very quiet Christmas day with the boys watching Christmas cartoons and playing with their new toys. It was a wonderful feeling to know that we were all together as a family once again. We all napped together in our bed that afternoon, I think everyone was exhausted both physically and emotionally. What a sigh of relief to be home, people are so right when they say “home sweet home”. We were home and adjusting. I couldn’t help but gasp with every step my baby boy took. He was beginning to look more and more like himself but different. I missed his face so much. I would never look back and say that this had been an easy road. And I don’t know what the future holds for us. I do know that being a mother is one of the hardest jobs there is. I was exhausted from the roller coaster ride of emotions. I had never been so scared in my life. I don’t know if I believe that you are never given more than you can handle. I believe that as a mother, you have to handle what you are given, even if it is too much at times. I never felt brave. I felt that I did the best that I could. One thing I am sure of is that there is no love like that of a mother and her child. And the most important thing I’ve learned is that I couldn’t possibly love anything more than I love my children. I love you Loic and Kalem! I also love my husband for being so strong and supportive during this entire ordeal, I love you baby. You are my rock!!!
A poem someone shared with me and I will always remember:
Mothers Heart
I loved you from the very start,
You stole my breath, embraced my heart.
Our life together has just begun,
Your part of me, my little one.
As mother with child, each day I grew.
My mind was filled with thoughts of you.
I’d daydream of the things we’d share,
Like late-night bottles and teddy bears.
Like first steps and skinned knees,
Like bedtime stories and ABC’s.
I thought of things you’d want to know,
Like how birds fly and flowers grow.
I thought of lessons I’d need to share,
Like standing tall and playing fair.
When I first saw your precious face,
I prayed your life be touched by grace.
I thanked the angels from above,
And promised you unending love.
Each night I lay you down to sleep,
I gently kiss your head and cheek.
I count your fingers and your toes,
I memorize your eyes and nose.
I linger at your nursery door,
Awed each day I love you more.
Through misty eyes, I dim the light,
I whisper “I love you’ every night.
I loved you from the very start,
You stole my breath, embraced my heart.
As mother and child our journey’s begun,
My heart’s yours forever little one.
Kalem (our little miracle) was born on March 6, 2005. My pregnancy had a few complications and we had several ultrasounds and he seemed to be a perfect healthy baby. We didn't know his sex because we wanted a surprise (both boys were surprises). My water broke at exactly midnight on March 6th and we rushed to the hospital, I was 35 weeks pregnant so I knew that he was early. Getting to the hospital I was almost 6cm dilated and he was breech. They rushed to do an emergency c-section, Kalem was born weighing in at 5lbs5oz and 17inches long. He was screaming with all his might. His blood sugars were low but other than that he seemed perfectly healthy, small but a good size for his gestational age.
The following day after the pediatrician looked him over I asked her about his head shape, it seemed odd and not nice and round like my other son was. She mentioned that it was probably from the birthing process. I told her that he was born via c-section due to him being breech. Later that afternoon she came back and told us that my baby had a condition that I had never heard of and never wrote it down for us so I couldn't recall what she said because I was in a state of shock. She told us that our baby was going to be "mentally retarded", will need several open brain surgeries and we will never know what his life will be like. She stated that we will watch and see how he progresses. She stated that she would see me next week in her office. My husband and I were devastated but yet ready to do whatever we needed to do for the little person that had just come into our lives who we instantly fell head over heels for.
I got home 4 days later and the first thing I did was googled fused skull and found craniosynostosis. There were so many kinds and once I found pictures it was clear that Kalem was Metopic, he looked so much like all the other babies. After reading case by case and joining a forum called craniokids.com it became clear to me that this could be corrected with surgery. Major surgery but yet this condition was treatable. We cried for days my husband and I from seeing pictures of children during and after surgery but it was clear to both of us that Kalem had trigonocephaly and had Metopic synostosis. We went to our follow-up appointment with Kalem to the pediatrician and mentioned what we had discovered. She stated that we would wait and see as he got older. I asked her to send us to a specialist and she felt like there wasn't a need for it. I was very frustrated with her.
Being the mom that I am, I once again googled to see if I could refer myself or find a specialist. I wanted a second opinion. I found the neurologist Dr. James Rutka at Sick Kids and e-mailed him directly with pictures of Kalem's head, I told him that I was almost 100% certain that Kalem was Metopic and that our pediatrician wouldn't refer us as she felt there was no need. He responded at 7:02 am the following day and mentioned that he too felt Kalem was Metopic from the pictures but would need to see him for diagnosis. He mentioned that his secretary would be in contact with us shortly. She called me that day to setup and appointment with him and the craniofacial surgeon as well as a CT scan. Kalem was diagnosed on March 29th, 2005 at Toronto’s Sick Kids hospital. We met both Dr's who would be performing his surgery; they explained to us in detail the surgery and the circumstances. They told us that he was moderate to severe and they recommended surgery. They informed us that he would grow up to be a happy normal child. That was music to our ears.
The wait for the surgery was extremely long, not one day passed by that I didn't worry. The date was for December 19th, 2005. The Dr's recommend to do this surgery between the ages of 10 to 12 months as the child's skull is still growing quickly but not as quick as prior to one year. The skull is still very soft at this point and is easier to work with. Kalem was going to be almost 10 months old at the time of the surgery.
December 19th came faster than what we were prepared for. We left for Toronto on December 18th and left behind our almost 3 year old son who we never left alone prior. He was staying at our house with his grandma and grandpa (Moe's parents). That alone was added stress to both of us. We had celebrated Christmas and opened up our presents on December 17th with the whole family. Since this was Kalem's first Christmas I wanted it to be special and not in a hospital. We also felt that he may be in pain so we wanted to do the celebrating before because we knew that there wouldn't be any celebrating for a little while afterwards. Daddy had made us matching cranio T-shits. We had a big Christmas dinner and it helped ease the stress a lot for everyone. We were surrounded by friends and family who we loved dearly. They really helped us get through this rough patch. Once in Toronto on December 18th I barely slept because all I wanted to do was hold and kiss Kalem's little triangular head. I knew it would be the last I would see of it. Daddy and I just held each other and cried because we were so scared. This was the first time him and I had ever felt this kind of scare in our lives.
The following morning came and we dressed Kalem in little sick kids scrubs that we had purchased. We were both sick to our stomachs and scared out of our wits. We could barely speak as tears would flow our eyes. They came to get us at 7:40 to go to the OR waiting room. At 7:51 an OR nurse came to get Kalem, he had peacefully fell asleep in my arms. I handed him over to the nurse ever so gently as tears of fear flew down my cheeks. Moe and I held on to one another as we watched the nurse take our baby away.
Hours went by until we got an update, finally the volunteers informed us that all was going well and there were no complications thus far. About an hour later at approx. 11:30 I went to express some milk. Upon my return down the hallway I could see Moe anxiously waiting and looking for me (he didn’t know where the nursing station was for pumping milk). My heart started to race as I could see him crying and I immediately thought something was wrong. He told me they were done, while I was gone his craniofacial Dr had come out to tell us everything was o.k. and the surgery was a success. He warned us that he looked VERY different and to be prepared for the big change. He said we may not recognize him. We anxiously waited in the waiting room for them to tell us when we could come see him. At 12:51 we got to wash up, put a gown on and go visit Kalem. When we walked in, it was very emotional he was hooked up to every tube, wire, monitor you could think of. He had IV’s coming from every limb. He looked so different, so much like his older brother and he had a round head. It was amazing!!! Moe and I cried and finally hugged with a sigh of relief that it was over and that soon we could take our baby home and heal. While they were transferring him from the recovery room to NICU we weren’t able to be there so we got a bite to eat and called everyone.
Upon our return, we waited to go see him in NICU. Once there he was crying so I calmed him and talked to him, sang to him. He seemed like he was in severe pain, they reassured me that he wasn’t. The nurse who was going to be with him for the next 12hrs straight without leaving his sight not even for a second explained in detail what every line was for and every machine and what it monitored. As she was about to give him more meds, Kalem started shaking, foaming from the mouth and his heart rate dropped to zero, basically our little man was coding. She pushed the big red button and over 30 nurses and Dr’s came running to his room with crash carts and machinery. They had to send us out of the room and it was devastating, just typing this is very difficult and tears are pouring down my cheeks. Nurses set us outside the hall, reassured us and gave us chairs to sit down as our knees became weak and faint. Then we heard cries and I knew that was a wonderful sign. Moe and I had never felt so many emotions in such a short time. The thought of losing our child was one I never thought would come upon us. Those few moments felt like hours. After I don’t know how much time, the Dr’s and nurses started leaving his room, we were allowed to re-enter. Both surgeons came up immediately to assess him. A CT scan was ordered immediately to see if there was any brain damage or any tears on the derma. They also had a cardiologist come and examine him to ensure there were no undiscovered issues with his heart. All tests came back normal and Kalem’s brain looked perfect. His heart rate continued to drop every so often throughout the next 24hrs. They decided to keep him in NICU for an additional 24hrs to ensure that his heart rate stabilized. The Dr’s came to the conclusion that Kalem had a severe reaction to the anesthesia. As Dr’s explained it to us, during major surgery the anesthesia used is like a cocktail of different medications, to pinpoint what actual cocktail that Kalem reacted to is next to impossible. If and when Kalem needs further surgery they will ensure to take extra precautionary measures to ensure his safety.
Kalem continued to recover from the surgery and his declines in heart rate slowly dissipated. There were fewer incidents. The swelling really kicked in 24hrs later, his eyes were slammed shut and he couldn’t see anymore. He slept a lot. It was difficult to know when he was awake because he couldn’t open his eyes. Mommy got to finally hold him after 48 hrs. It was hard and difficult because of all the tubes, IV’s and monitors but it felt soooo good to hold my baby boy. He seemed to enjoy it as well. Mommy and daddy spent a LOT of time, talking to him, singing to him and reading to him. He responded very well to our voices and it amazed us on how he would turn towards the voice speaking. I had to give him water to start for his first feeding and if he kept that down I was able to nurse him. The first time I got to nurse him felt incredible, he was so happy to suckle and it seemed like it completely soothed him from his pain. If he got irritable or cranky, I would nurse him and he felt better and was more content. The power of mother’s milk was incredible; it soothed him better than codeine.
On day 3 we got to give him a bathe and walk around with him, they said that the more he sat upright, the faster the swelling would go down so we walked, and walked with him. As we walked around we could see children that were battling cancer and fighting for their lives. It was sad to see all the sick children. As much as we went through a nightmare I couldn’t imagine what the parents to those children were going through. My heart felt for those families. I prayed that they would all eventually return home safe and sound and cancer free.
Kalem was doing amazing. He started eating solids again and even though he couldn’t see we would give him Cheerios and he would find them in our hands. He was too funny. I missed his baby blues and couldn’t wait to see them once again. Today was a hard day because when I called Loic he started crying and asking us when we were coming home, he told me that he missed me, papa and Kalem. He sounded so hurt and scared, he broke my heart. I knew he was in good hands but I so longed to touch him. This had by far been the toughest days of my life both physically and emotionally. I long to go home but I know that we need to ensure Kalem is safe to go. If only the swelling could go down. We will be going home in a few days. I am so scared that something will happen but I can’t wait to get him into his own bed
We were on day five and the Dr’s said that we could go home, Kalem’s eyes were still closed, he was drinking and eating and seemed to be feeling fine. Moe and I both felt like we should wait one more day for his eyes to open and be examined. As much as we wanted to go home, we just didn’t feel comfortable leaving without his eyes being examined. Christmas Eve was here and still Kalem didn’t open his eyes. The Dr’s reassured us that it was o.k. to go home. If we had any concerns or questions to call the emergency on call Dr in the craniofacial department. We wanted to get home so we accepted to leave. So off we went. We headed home with a baby that didn’t even resemble the same baby we had brought to the hospital a few days ago. The drive home was difficult but we took our time. We finally arrived home and we were overjoyed from seeing Loic. He was ecstatic to see us as were we. He was a little afraid of Kalem but we explained to him again what happened and he felt really bad and gave his bobo a kiss. He was so sweet and gentle with Kalem. We spent a very quiet Christmas day with the boys watching Christmas cartoons and playing with their new toys. It was a wonderful feeling to know that we were all together as a family once again. We all napped together in our bed that afternoon, I think everyone was exhausted both physically and emotionally. What a sigh of relief to be home, people are so right when they say “home sweet home”. We were home and adjusting. I couldn’t help but gasp with every step my baby boy took. He was beginning to look more and more like himself but different. I missed his face so much. I would never look back and say that this had been an easy road. And I don’t know what the future holds for us. I do know that being a mother is one of the hardest jobs there is. I was exhausted from the roller coaster ride of emotions. I had never been so scared in my life. I don’t know if I believe that you are never given more than you can handle. I believe that as a mother, you have to handle what you are given, even if it is too much at times. I never felt brave. I felt that I did the best that I could. One thing I am sure of is that there is no love like that of a mother and her child. And the most important thing I’ve learned is that I couldn’t possibly love anything more than I love my children. I love you Loic and Kalem! I also love my husband for being so strong and supportive during this entire ordeal, I love you baby. You are my rock!!!
A poem someone shared with me and I will always remember:
Mothers Heart
I loved you from the very start,
You stole my breath, embraced my heart.
Our life together has just begun,
Your part of me, my little one.
As mother with child, each day I grew.
My mind was filled with thoughts of you.
I’d daydream of the things we’d share,
Like late-night bottles and teddy bears.
Like first steps and skinned knees,
Like bedtime stories and ABC’s.
I thought of things you’d want to know,
Like how birds fly and flowers grow.
I thought of lessons I’d need to share,
Like standing tall and playing fair.
When I first saw your precious face,
I prayed your life be touched by grace.
I thanked the angels from above,
And promised you unending love.
Each night I lay you down to sleep,
I gently kiss your head and cheek.
I count your fingers and your toes,
I memorize your eyes and nose.
I linger at your nursery door,
Awed each day I love you more.
Through misty eyes, I dim the light,
I whisper “I love you’ every night.
I loved you from the very start,
You stole my breath, embraced my heart.
As mother and child our journey’s begun,
My heart’s yours forever little one.