It was the morning of Nikhil's second surgery. We had to be in the hospital by 6 am. We reached very early and had to wait for quite some time. Nikhil got very impatient this time around but my mom was able to handle him quite well. Then they took us in and it was the same drill again. The whole thing just felt like we were reliving a nightmare!
This time when Dr Cochrane came to see us, I didn't know what to say to him. I just kept looking at him. Whatever followed is a total blur. I took Nikhil to the operating room... what in the world made me do that again I have no idea !!! I had wished so bad that nikhil would be sleeping when I leave him there but he was wide awake. I knew he was never going to forgive me for doing this. I laid him on the table and ran out crying. I sank into a seat with Nikhil's onesie clenched in my hands and cried for a long time. It still had his smell and I kept taking it all in. It was going to be a while before I would hold him again the way I did last night. I was prepared not to move from my seat till the surgery ended and just kept staring into space and praying. I said a lot of things and I admit I have never prayed like I did that day. It was just different. It was a prayer from my heart.
My mom read the prayer book the whole time and after about 2 hrs she forced me to step out of the waiting area for some fresh air. The next couple of hours were very difficult. Around noon, both docs stepped out. This time they looked at us and smiled. My baby was fine. Nikhil was fine and he did super ! I was dying to hear these words. The surgery was successful !!!
The main surgery had ended and in some time he was to be moved to a recovery room. There was an hour before we could see him. We said a small prayer and stepped out to make some phone calls. First, I called Salil and he was so emotional that his voice cracked. He couldn't wait to reach the hospital. Dad stayed back so he could look after Neil. I also called my family in Muscat and Texas. It was way past midnight in Muscat but my father answered the phone right away. I knew he would not be asleep till he heard back from us. I was crying and smiling at the same time!
Seeing Nikhil in the recovery room was not as much a shock as last time. I knew what to expect and was ready for it. This time he was heavily sedated with narcotic drugs. He looked very different. His forehead was distinctly flat. The pointed ridge we all had been seeing since his birth was gone. His forehead looked more like us. He had some swelling on his face and the nurse mentioned that it gets worse on the second or third day before it improves. There was a second incision right next to the first incision. So it looked even more bloodier this time. The incision was open; no bandages no covering, nothing. They say it heals faster if exposed to air. The incision is not really "open". They apply an invisible sealant which protects the incision from air and water. It stays for a few days and then falls off like our skin cells do.
Seeing your child after the surgery feels very different. He was right in front of me but I missed him. It just didn't feel like it was HIM. His head was shaved, his forehead was noticeably different, his eyes were aligned straight and technically... he was near perfect but still it wasn't the face I was used to for the last 12 months!
With the swelling and the pointed sides of his forehead, it was hard to visualize how he would look after weeks or months. The doctor said the surgery went perfect and they were very happy with the results. But most parents don't have the eye of a doctor. We couldn't see the "near perfect results" at that moment. We just had to trust the doc and go by his word that it will take time but as his head grows and the bones develop, it will all look nice and round.
This time when Dr Cochrane came to see us, I didn't know what to say to him. I just kept looking at him. Whatever followed is a total blur. I took Nikhil to the operating room... what in the world made me do that again I have no idea !!! I had wished so bad that nikhil would be sleeping when I leave him there but he was wide awake. I knew he was never going to forgive me for doing this. I laid him on the table and ran out crying. I sank into a seat with Nikhil's onesie clenched in my hands and cried for a long time. It still had his smell and I kept taking it all in. It was going to be a while before I would hold him again the way I did last night. I was prepared not to move from my seat till the surgery ended and just kept staring into space and praying. I said a lot of things and I admit I have never prayed like I did that day. It was just different. It was a prayer from my heart.
My mom read the prayer book the whole time and after about 2 hrs she forced me to step out of the waiting area for some fresh air. The next couple of hours were very difficult. Around noon, both docs stepped out. This time they looked at us and smiled. My baby was fine. Nikhil was fine and he did super ! I was dying to hear these words. The surgery was successful !!!
The main surgery had ended and in some time he was to be moved to a recovery room. There was an hour before we could see him. We said a small prayer and stepped out to make some phone calls. First, I called Salil and he was so emotional that his voice cracked. He couldn't wait to reach the hospital. Dad stayed back so he could look after Neil. I also called my family in Muscat and Texas. It was way past midnight in Muscat but my father answered the phone right away. I knew he would not be asleep till he heard back from us. I was crying and smiling at the same time!
Seeing Nikhil in the recovery room was not as much a shock as last time. I knew what to expect and was ready for it. This time he was heavily sedated with narcotic drugs. He looked very different. His forehead was distinctly flat. The pointed ridge we all had been seeing since his birth was gone. His forehead looked more like us. He had some swelling on his face and the nurse mentioned that it gets worse on the second or third day before it improves. There was a second incision right next to the first incision. So it looked even more bloodier this time. The incision was open; no bandages no covering, nothing. They say it heals faster if exposed to air. The incision is not really "open". They apply an invisible sealant which protects the incision from air and water. It stays for a few days and then falls off like our skin cells do.
Seeing your child after the surgery feels very different. He was right in front of me but I missed him. It just didn't feel like it was HIM. His head was shaved, his forehead was noticeably different, his eyes were aligned straight and technically... he was near perfect but still it wasn't the face I was used to for the last 12 months!
With the swelling and the pointed sides of his forehead, it was hard to visualize how he would look after weeks or months. The doctor said the surgery went perfect and they were very happy with the results. But most parents don't have the eye of a doctor. We couldn't see the "near perfect results" at that moment. We just had to trust the doc and go by his word that it will take time but as his head grows and the bones develop, it will all look nice and round.
They moved Nikhil to a room which was shared by 3 other patients. There was absolutely no space to move around after the guest bed was expanded. We were going to spend the next 4-5 days there.
We settled in and the nurse explained the schedule for Nikhil. They would be checking his codeine (drug) levels frequently and would be taking his vitals every hour.
There was a baby on the other side of the curtain who was maybe 3-4 months old and had a gastric problem. He cried most of the time.... even at night. I felt sorry for the parents. They were quite young and this was their first baby. The baby was born premature and had been in the hospital since birth.
We couldn't really sleep due to the crying and also because it was so cramped in there. I had no complains over these small issues because the worst was over and my baby was safe, but I felt sorry for my mom. She stayed with me, every step of the way without complaining. At the age of 60, I was making her go through all this and I felt really bad for that. But she was great as always and kept telling me this is where she wanted to be right now. with me. and with Nikhil.
Nikhil didn't wake up much that day and he was the only one able to sleep in our room of 8 people. The disturbance didnt bother him at all and we thanked the codeine for that. The next day his face started to swell and he was running a mild fever. Fever is never good after surgery. It can mean a possibility of infection and is taken very seriously. The frequency of checkups went up and they were monitoring his temperature every half an hour. The swelling on Day 2 went up to the point that his eyes were closed shut. I couldn't make out if he was awake or asleep or somewhere in between. Reading numerous other blogs and other parents experiences, I knew I had to keep talking to him. My voice was helping him not be afraid of what was going on around him. The constant beeping sounds, crying noises, poking and prodding of thermometers must have been so scary for him. I couldn't imagine what it must have been for him that time. Feeling groggy, scared, not able to see and being totally confused about his surroundings ! This is a one year old we are talking about.
One thing that I feel would have really helped him but I didn't attempt was to hold him close. I was too scared to do that. The wound looked scary, he was all swollen up and with the tubes all around him, it was just too hard for me. I bolstered the courage to pick him up on Day 3 and I could sense that he really liked it. You will be surprised at how heavy your child feels, due to the swelling.
We settled in and the nurse explained the schedule for Nikhil. They would be checking his codeine (drug) levels frequently and would be taking his vitals every hour.
There was a baby on the other side of the curtain who was maybe 3-4 months old and had a gastric problem. He cried most of the time.... even at night. I felt sorry for the parents. They were quite young and this was their first baby. The baby was born premature and had been in the hospital since birth.
We couldn't really sleep due to the crying and also because it was so cramped in there. I had no complains over these small issues because the worst was over and my baby was safe, but I felt sorry for my mom. She stayed with me, every step of the way without complaining. At the age of 60, I was making her go through all this and I felt really bad for that. But she was great as always and kept telling me this is where she wanted to be right now. with me. and with Nikhil.
Nikhil didn't wake up much that day and he was the only one able to sleep in our room of 8 people. The disturbance didnt bother him at all and we thanked the codeine for that. The next day his face started to swell and he was running a mild fever. Fever is never good after surgery. It can mean a possibility of infection and is taken very seriously. The frequency of checkups went up and they were monitoring his temperature every half an hour. The swelling on Day 2 went up to the point that his eyes were closed shut. I couldn't make out if he was awake or asleep or somewhere in between. Reading numerous other blogs and other parents experiences, I knew I had to keep talking to him. My voice was helping him not be afraid of what was going on around him. The constant beeping sounds, crying noises, poking and prodding of thermometers must have been so scary for him. I couldn't imagine what it must have been for him that time. Feeling groggy, scared, not able to see and being totally confused about his surroundings ! This is a one year old we are talking about.
One thing that I feel would have really helped him but I didn't attempt was to hold him close. I was too scared to do that. The wound looked scary, he was all swollen up and with the tubes all around him, it was just too hard for me. I bolstered the courage to pick him up on Day 3 and I could sense that he really liked it. You will be surprised at how heavy your child feels, due to the swelling.
Nikhil had high temperature and we were worried. They did some blood work and wanted a chest x-ray taken. Despite the strong medications, his fever wouldn't budge. He was taken to the radiology department with the whole array of tubes and machines where they had his X-ray taken. It was heartbreaking to see him because he was awake. His eyes were closed but I could make out that he was wide awake. He obviously could not sit, so they lay him on the xray table binding his hands up close to his ears so as to get a good shot. He couldn't move at all and it just felt like a torture technique. It was necessary and the procedure was painless but it was hard to see him like that. He didn't even have enough energy to cry and just moaned softly and cried. I was hoping the fever to be a minor hurdle and would go away soon. Getting through that night was a little difficult. We didn't sleep much as we had to keep an eye on his fever and they also dropped his med levels so he wasn't as sedated as the previous night and was slowly getting his senses back.
The next morning, his results were in and we were relieved to know that there weren't any signs of infection. This meant that most likely the fever was a reaction to the surgery. But they had to be sure. Luckily, the same evening we started seeing some improvement. His temperature started dropping towards the normal range and no more tests were now required. The doctors were monitoring him closely like before but there was no need to panic.
The next morning, his results were in and we were relieved to know that there weren't any signs of infection. This meant that most likely the fever was a reaction to the surgery. But they had to be sure. Luckily, the same evening we started seeing some improvement. His temperature started dropping towards the normal range and no more tests were now required. The doctors were monitoring him closely like before but there was no need to panic.
Once his fever had dropped, we felt more comfortable holding him. The whole time I would sing or talk to him. Before his surgery, I had recorded Neil's voice in the form of songs and dialogues, on my phone and would replay them over and over again. He felt better when he was being held. My mom and I took turns holding and gently rocking him. Familiar voices, touch, smells and textures help the most in a situation like this. We took with us his blanket, his fav toys (musical ones especially), recorded voices, clothes and things he was most familiar with. That seemed to calm him down.
In the evening, Dad and Neil came to see us at the hospital. It was so good to see them! We didn't let Neil come up and see Nikhil. The ward was too depressing and it would have been too much of a shock for him to see Nikhil at that point. We wanted to tell Neil what to expect, just before Nikhil was to come home. So we just kept it simple and had him play in the play area and spend time with us while Dad also got to see Nikhil. It was really special.
On the fourth day, one of his eyes opened a teeny tiny bit. We were so happy to see his eye and we literally clapped and celebrated. Oh! what a moment that was! He would strain his neck in a particular position so he could also see us well. It was so cute! I was dying to see him smile again and by afternoon he flashed a million dollar smile at us! No.....it was priceless! Nikhil was now completely off codeine and was only given Tylenol to help with the pain. The tubes were off and he could easily crawl around in his bed. We were also allowed to take him out for a short stroll in the hallway. Then came the good news. The doctors were ready to discharge him from the hospital. To me, the nightmare was finally over and we could take him home. Just as a precaution the doctor suggested we get a custom foam helmet for him. The occupational therapy department dealt with this stuff and had him measured and everything. Before we left the hospital, Nikhil had a new accessory that we hoped he will wear for the next 6 weeks, at least.
Once home, we were obviously quite relaxed. The worst was over and now all we had to do was to take care of him. The doctors had warned us that he should not fall or bump his head for the first couple of weeks and we took turns watching him like a hawk! Sometimes we would literally crawl behind him because his balance was a little off after the surgery. His crawling was a little wobbly and sometimes, all of a sudden he would plop or hit against something. This phase didn't last for like weeks but days yes. We had to be extra careful because he would pull the helmet out most times. It was May and getting warmer. The foam helmet made him sweat and he hated it.
Handling Neil the day we came home, was easier than we had thought. He stared at Nikhil for some time but didn't freak out. Nikhil had a big boo-boo on his head and he had to be very gentle with him is all he understood and that was enough. All it took was constantly reminding him how he was supposed to behave around Nikhil and it went well.
In the evening, Dad and Neil came to see us at the hospital. It was so good to see them! We didn't let Neil come up and see Nikhil. The ward was too depressing and it would have been too much of a shock for him to see Nikhil at that point. We wanted to tell Neil what to expect, just before Nikhil was to come home. So we just kept it simple and had him play in the play area and spend time with us while Dad also got to see Nikhil. It was really special.
On the fourth day, one of his eyes opened a teeny tiny bit. We were so happy to see his eye and we literally clapped and celebrated. Oh! what a moment that was! He would strain his neck in a particular position so he could also see us well. It was so cute! I was dying to see him smile again and by afternoon he flashed a million dollar smile at us! No.....it was priceless! Nikhil was now completely off codeine and was only given Tylenol to help with the pain. The tubes were off and he could easily crawl around in his bed. We were also allowed to take him out for a short stroll in the hallway. Then came the good news. The doctors were ready to discharge him from the hospital. To me, the nightmare was finally over and we could take him home. Just as a precaution the doctor suggested we get a custom foam helmet for him. The occupational therapy department dealt with this stuff and had him measured and everything. Before we left the hospital, Nikhil had a new accessory that we hoped he will wear for the next 6 weeks, at least.
Once home, we were obviously quite relaxed. The worst was over and now all we had to do was to take care of him. The doctors had warned us that he should not fall or bump his head for the first couple of weeks and we took turns watching him like a hawk! Sometimes we would literally crawl behind him because his balance was a little off after the surgery. His crawling was a little wobbly and sometimes, all of a sudden he would plop or hit against something. This phase didn't last for like weeks but days yes. We had to be extra careful because he would pull the helmet out most times. It was May and getting warmer. The foam helmet made him sweat and he hated it.
Handling Neil the day we came home, was easier than we had thought. He stared at Nikhil for some time but didn't freak out. Nikhil had a big boo-boo on his head and he had to be very gentle with him is all he understood and that was enough. All it took was constantly reminding him how he was supposed to behave around Nikhil and it went well.
Caring for the Incision: The wound had an invisible sealant over it and we were allowed to even shampoo him and wash his hair the very next day. But we didn't. We wanted to go slow and not wash and clean him right away. The whole idea of shampooing felt a little scary. Scabs had started to form but the doctors advised us not to pick them or scratch the area. Eventually they would fall off on its own. Another issue I faced was the amount of hair growth on Nikhil's head was too much. The first couple of days, I only managed to clean the back of his head and the long strands of hair. I never touched the front area. We also started applying coconut oil on his scar (an age-old Indian remedy for any kinds of wound). The oil helps keep the skin soft and quickens the healing process. He scratched a lot less because of the oil. At night, we usually put mittens on so he wouldn't scratch the area. After 3-4 days I washed his hair completely. Water didn't seem to bother him and I used a soft washcloth to gently clean the wound.
Road to Recovery: We were amazed at the rate of his recovery ! I had read that babies bounce back from a surgery very quickly and are extremely resilient to pain, but I had to see it to believe it. He was acting like a normal one year old by day 5. He was crawling around, playing with his toys and just being himself as if all this never happened ! This is an impossible feat for an adult. If I was in his place, I would have stayed in bed whining and complaining about my surgery. Recovery would have taken at least 15 days. There are things we can learn from children and this is one of them. It does take time to heal completely. Physically, he was riding in the fastest track on the road to recovery, but emotionally, it took some time. It took about 20-25 days for Nikhil to get really normal as before. Most of all, he was scared to close his eyes. For 3 days his eyes were swollen shut and during that time, the constant poking and prodding must have been so scary for him. He couldn't sleep well at night, hated when it was dark and had to be held and comforted all the time. His crying was frequent and it was not due to pain. He just needed assurance that he was safe. We stayed patient and gave him lots of hugs and love and let time do the rest. I was also so wrong in thinking that my baby would never forgive me for making him go through this twice. Babies love you no matter what. They don't judge you or hold a grudge. Nikhil can't walk or talk yet. He doesn't know a thing about this world but still he has taught me so much in this past year. His love and innocence is unlike anything I have experienced. This whole experience has taught me to be a better mother, a better human being and to be thankful for life. I love him more than I had ever imagined !
To all the parents out there...... if you think you will be able to get through this by yourself, think again. Get all the help because you will need it. Trust me. We were fortunate to have our parents travel all the way to Vancouver and help us get through this difficult phase in our lives. My mother was by my side all the time, 24x7 helping me, giving me strength and encouraging me to think positive. Salil's father helped us tremendously by looking after Neil. I did not have to worry about him at all during this time. Dad maintains a very calm and a happy demeanor in any situation and it helped keep the overall atmosphere in the house less tense. In all, it was a team effort and we succeeded !
(Story continues on: 07_post surgery)
Road to Recovery: We were amazed at the rate of his recovery ! I had read that babies bounce back from a surgery very quickly and are extremely resilient to pain, but I had to see it to believe it. He was acting like a normal one year old by day 5. He was crawling around, playing with his toys and just being himself as if all this never happened ! This is an impossible feat for an adult. If I was in his place, I would have stayed in bed whining and complaining about my surgery. Recovery would have taken at least 15 days. There are things we can learn from children and this is one of them. It does take time to heal completely. Physically, he was riding in the fastest track on the road to recovery, but emotionally, it took some time. It took about 20-25 days for Nikhil to get really normal as before. Most of all, he was scared to close his eyes. For 3 days his eyes were swollen shut and during that time, the constant poking and prodding must have been so scary for him. He couldn't sleep well at night, hated when it was dark and had to be held and comforted all the time. His crying was frequent and it was not due to pain. He just needed assurance that he was safe. We stayed patient and gave him lots of hugs and love and let time do the rest. I was also so wrong in thinking that my baby would never forgive me for making him go through this twice. Babies love you no matter what. They don't judge you or hold a grudge. Nikhil can't walk or talk yet. He doesn't know a thing about this world but still he has taught me so much in this past year. His love and innocence is unlike anything I have experienced. This whole experience has taught me to be a better mother, a better human being and to be thankful for life. I love him more than I had ever imagined !
To all the parents out there...... if you think you will be able to get through this by yourself, think again. Get all the help because you will need it. Trust me. We were fortunate to have our parents travel all the way to Vancouver and help us get through this difficult phase in our lives. My mother was by my side all the time, 24x7 helping me, giving me strength and encouraging me to think positive. Salil's father helped us tremendously by looking after Neil. I did not have to worry about him at all during this time. Dad maintains a very calm and a happy demeanor in any situation and it helped keep the overall atmosphere in the house less tense. In all, it was a team effort and we succeeded !
(Story continues on: 07_post surgery)