This is where we are today. Head looks good. He had a bad fall last week and I almost froze when the school called me to inform about it. I drove at breakneck speed to reach his school. D dropped everything at work and reached home in record time. Only to be greeted by a giggly BB. He had a big bump on his head, but it did not seem to bother him. After applying some ice, the bump started going down. We started breathing again.
https://thememorymaker.wordpress.com/2009/12/08/day-4-post-op/
When I wrote the above post, I thought I will never heal. I could never look beyond the pain that both my baby and me were in at that point. But time, as they say is the biggest healer. Today it has been two years since we got him home, and he is quite a handful today. If I do not tell anyone, no one will know that he had such a major surgery. I am thankful for that. Like I was said, it is a major surgery with extremely minor side effects. Yes, I was scared and I did not know. But kids heal and the best part is that they do not remember. It is another story that I will never forget that moment when he went in for surgery.
Here is how BB looked a year after his Cranio Surgery. This photo was clicked on December 2010, exactly a year after his surgery.
We still feel the bumps on his head, and its not quite smooth. Hopefully those will go away with time.
I have wanted to write about our journey post surgery but I have been too lazy to blog lately. The boys are more than a handful and they take up most of my time and energy. But mostly it is plain simple laziness I guess.
Our post surgery journey has been more or less uneventful. There was this one incidence where Junior picked up the remote and hit it on Bumbum’s head, thankfully my hand came in-between and took most of the hit. It did give us a mini heart attack expecting the worst, but thankfully, it turned out to be nothing. Apart from that, the journey has been smooth. We have done the best we could to keep a toddler (an over active one too) from falling as much as we could. He did have some minor falls here and there but nothing major or anything where his head was involved.
Post surgery, the head has rounded up well, but we still have some swelling around his eyes. The swelling did take a lot of time to go away and our doctor told us that sometimes it even takes as long as 6 months or more for it to completely go away. Bumbum still has some minor swelling around his left eye. Another thing are the plates. Bumbum has dissolving plates in his skull now, but we can feel them when we touch. This again according to the doctors is very common. Feeling the plates is very daunting for me, it just keeps on reminding me of his surgery. However, since it takes over a year for the plates to melt away I guess I have to live with this for now.
Post surgery we had monthly checkups, 2 with his plastic surgeon and one with the neurosurgeon. All these appointments were roughly 10 minutes each where they just felt his head saw the stitches and that was it. The funny part is we drive from NJ to NY an hour each way for these 10 min appointments.
I wish we had taken in more pictures post surgery to put up here, but during the days when Bumbum had his surgery, I just did not want to click pictures. Here are a few pre and post surgery pictures.
This is at 5 months, when we had first consulted a doctor about his forehead shape:
Then around one year actual (9 months corrected) we have Bumbum looking like this:
Just before being discharged from the hospital post surgery
One month post surgery (Jan 2010) His eyes are all swollen up still ..
Two months post surgery (Feb 2010) on our way back from the last doctors appointment
We have come a long way 🙂 And yes I am smiling after all the drama .. It’s the same me who fainted when they took Bumbum in for the surgery. Time IS the biggest healer and Bumbum does look so much better now.
He is a very brave little man ..
Sunday, Dec 6 2009
And this is the BESTEST DAY 🙂 We are all going home. Bumbum has made tremendous progress from last night. He ate a little better today. His eyes are much better looking. He was cheerful and he played his favourite peek-a-boo too. The doctors were happy with his progress. We all agreed that he will feel better when at home. nd there is nothing much that we can do at the hospital anyways.
From now it would be a different routine for him for three months. The biggest challenge would be to keep him calrm and to keep him from taking any hard hit at the head. We have to keep him and Junior from fighting and most importantly “head butmting”. They do that a lot over toys. So we took a deep breathe and packed up. D headed towards the appartme nt to pack up while I finish up the hospital formalities.
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After I wrote the above lines, Bumbum woke up cranky and I knew that he was ready to leave as well. The hospital formalities took us a good 3 hours, and it was almost evening before we could get Bumbum out of that place. I was super happy. I was just dying to see Junior’s reaction when he would meet Bumbum after 4 days. There is absolutely no words to describe what I saw. I will regret not having a video camera at that moment, for the rest of my life. Junior was excited and jumped up and down. Bumbum could not open his eyes well from all the swelling but he knew, he just knew that it was Junior standing next to him and they yelled. They yelled and they blabbered. Twins they say have their own language, may be they do. What I saw at that moment just made me forget the last couple of days. It made me smile and join them in their yelling game. We are whole again.
Sat: Dec 05 ’09
Today it was me who was not feeling quite well. 4 sleepless nights usually does that. I woke up with a bad head ache. Bumbum needed some pain medications last night and he kept waking up every 3 hours. Then after the medications we needed to pat him back to sleep and just stay attentive so that he would not start scratching his eyes. He has started looking better right after they took the bandage off. The stitches on his head are almost invisible and with the swelling going down it’s looking better. Dr. Staffenberg really did an awesome job. I will post some pre and post surgery pictures of Bumbum after we get home. His head is round and nice now and there is no visible scar from the surgery. And today is just the third day post-op. Three years down the lane I think it would be hard to tell that Bumbum ever had any surgery done. Since they did not shave his hair off, whatever swelling he has on the head is not really visible. But these are really not the highlight of the day. The best part of today was when the nurses took all the IV lines off him and we could hold Bumbum. He immediately relaxed. We felt so much better after we got to hold him. And then when I stepped out with a smile on my face to meet Junior I felt the first snow of the season fall on my head. It was such a beautiful day. I walked in the snow to the apartment and Junior was right there waiting to play with me. Last few days I have been writing about Bumbum because he has been struggling here, but Junior my hero has been putting up an extremely brave front too. The baby who has never liked been fed or handled by anyone else but me has been so mature about this whole thing, that honestly I am surprised. He has been calm with my mom, taking all the feeds from her well. Junior has weight gain issues, so we are over sensitive about his food. What he eats, how much he eats, duration everything. So I was worried about him when we came here. But he has been behaving very well 🙂 Slowly we are getting out of this situation and I am so proud of all the men.
D has been a super strong dad. He is a great father anyways. He has stayed up at nights with the boys, changed diapers, given bath, cooked for them and all of these on an everyday basis for the last year and a half. So I did expect him to be staying up and sitting by Bumbum’s bed side may be more than I do, which he did. That’s what makes him such a great dad.
Today has been better. Several things worked out as we wanted them to. The doctors and the nurse managers came and assured me about the pain management issues we had last night. They were really helpful and they understood our concerns. So now I am sure they would be no confusion about the pain medication. But on the other hand, Bumbum did not need any morphine for the last 36 hours. So I am sure he won’t need any going ahead. This is usually expected by the time the babies are on Day 2. The first 48 hours are anyways the worst. I wish he got the much needed dose last night; we could have saved him from some pain. But well, everything is in the past now and after talking to the doctors and the nurse managers today, I am sure that it was just one person who was wrong. I will not blame this incidence on the whole institution. I guess if this happens again today I am just going to page the surgeon who did Bumbum’s surgery and he will take the final call. I should have done it yesterday. He is anyways just a phone call or email away. But well, we all learn with such situations.
Best part of the day (and I missed it) was when Bumbum’s bandage came off. I usually spend post breakfast time with Junior at the apartment we rented out here. He needs his own mommy time too. So while I was playing peek-a-boo with my li’l munchkin I got this phone call from D saying that they are taking the dressing off. I was nervous to know how his head looked. D assured me that it looked awesome and he sounded so excited over the phone. It has been a long time I did not hear that excitement in his tone. I knew even on the phone how happy he was. I knew and had complete trust on Dr. Staffenberg. I had come this far just trusting that he would be the best surgeon to do this surgery for Bumbum. We had our confusions about whether or not the surgery is a necessity, but there was one thing we knew for sure, if we are having the surgery Dr. S would do it. I wish he could be a visiting doctor to NJ though.
Bumbum has slept well most of the day today. His eyes are still puffed up and he cannot open them but the swelling is going down and I think we should be able to see some significant progress tomorrow. Fingers crossed.
Yesterday was Day 1 post op. It was tough. Tough is a small word to explain what D and I are going through here on a daily basis. The fear, the anxiety, the fact that Bumbum is lying there all swollen and puffed up unable to open his eyes, the fact that the staff is although knowledgeable is not compassionate around a family whose baby just had surgery. Sometimes compassion makes a huge difference, especially if people are going through a situation like ours.
Coming back to 24 hours post op, the good thing was that he was moved from the ICU to the regular ward. He did have a uneventful morning, he pretty much slept through it all. The medications were given on time, but he refused the bottle so he was still on the IV fluids. All the monitors came off yesterday so he slept calmly through the night.
After moving from the ICU to the regular ward, what surprised me was the fact that Bumbum an ex preemie was in a place where there are RSV and flu patients. The fact that he had a major surgery and would be more prone to catching a bug, should have been also taken into consideration. His roommate here was coughing quite badly when we came into this room. I had to stand up for Bumbum and I started asking people on the floor if there was an option of him being alone in a room or to keep him in some place where he would be less exposed to a bug, may be share a room with someone who did not have any respiratory issues but was like Bumbum a surgery patient or something similar. I got all sorts of answers which pretty much summed up to say that “We know what we are doing so please just mind your own business”. I had it enough with the corporate lingo; I was one of them till a year back so I know very well how this thing works. I knew I was just being hushed up with sugar coated words. Anyways I know for a fact that Bumbum’s ex-preemie status and the fact that he has just had a major surgery added up to the risk of him catching anything in the air and he should not be sharing room with anyone who is coughing so hard. May be the person just had allergies and would not harm Bumbum in anyway, but I had to make sure that everyone knew that he was an Ex-preemie and since it is the RSV season, that they are a little more careful.
But I guess the fact that I made it a point to talk to senior authorities and reached out to senior doctors who understood my concerns and agreed, things started moving and eventually people came and told me that they are making sure that he is not exposed to anything that might cause a risk to his health. The coughing neighbor was scheduled for discharge and we have a confirmation that no one with respiratory issues or any kind of infection will be put in this room. Thank God! One thing less to worry about.
I do not know if it was mere coincidence but Bumbum started wheezing a couple of hours after his entry to the regular ward. We all waited to see if it got worse and prayed that it would just stay just a sound. But it did not and it just became more and more audible. Thankfully the Albuterol that was administered worked and then combined with some Pedialite, it calmed the heavy breathing.
He was waking up during the night specially around the time the pain medication effect started wearing off. But after the albuterol, he pretty much needed just the pain meds. The sound could have been from the intubation during the surgery, but I think there is no way to find out for sure.
I am hoping for an uneventful day today. Just hoping he sleeps through the night, gets his pain medications on time and just heals as soon as he can so that we can just get out of here and he can be where he belongs, at home.
We thought we are brave, we thought we are prepared, we thought we knew it all. We woke Bumbum up early in the morning and took him to the hospital telling him to be a strong boy. I think he listened to us and he was strong. He did throw a fit as expected when the doctors tried to dress him up for the surgery and did his vitals, but the moment he went to D’s lap he was happy all over again. He thought that he would be going to have fun while D took him to the OT for them to put him under anesthesia. He was smiling as I hugged him and wished him a speedy recovery. My heart broke seeing him go to that OT. D came back after what seemed ages. ( In reality he was in there for 15 minutes). After he came back and I reached to hug him I saw his eyes were all red and I could say he was crying. That was it for me. He for all my growing up years has been my rock, my pillar. When I saw those tears in his eyes I broke down like a baby. I cried and cried and cried till… till I actually fainted. Some one picked me up gave me water and I was back in a jiffy but I was still crying. Another person came to me to talk to me about how strong I have to be for my baby. Yes ma’am, I know that speech too. I can give it better than you to someone else. But it was my baby they took inside to open his head up!! A part of me was being ripped out and stitched up in that OT and I had to be strong and smile and greet people.
But D just took me out of that place and just held on to me while I calmed down slowly. Accepted what was happening and prepared ourselves for what we were going to see. After what seemed like ages the NS came out (reality: 2 hours, but that IS a long time). He said that Bumbum was doing well, the first part of the surgery had gone very well and he was extremely happy. That calmed us down further. We were comforted to know that Bumbum did not lose much blood and did not get a blood transfusion. Now the wait was for the plastic surgeon to come and tell us that the surgery is done and give my baby back in my arms (I really hoped that I will get to hold him). Again the clock refused to move fast enough. We had made a million calls to D’s family back in India to just keep ourselves from crying more. It was such a relief to talk to his sister. She really gives me a lot of strength at times.
Finally Bumbum was out of the OT and in the ICU after a whole 5 hours. When I saw him I ignored the bandages, I ignored the wires on him, I was just so happy to see my baby again. His head was in a huge white turban. I sometimes call him Cookie Singh jokingly, now he did look like Cookie Singh J The vitals looked great. We were used to those machines from the NICU. So we knew that he was doing good. He did not seem to be in much pain. Tons of doctors came, NS residents, Cosmetic surgeon residents, ICU doctors, attending physicians, nurses, head nurses, security guy ( no clue why he came though!). Everyone more or less told us the same story about the surgery. All the time they talked I just held on to Bumbum’s finger. I don’t think I have words to explain how I felt at that moment. He was with me and that was what mattered at that time. I knew he would do great; it would be me who did not have the guts. He is the superhero anyways.
The first night was rough, as the anesthesia wore off, I guess the discomfort started. He tossed and turned and at one point even tried to crawl and stand. The morphine did not have the expected effect of keeping him knocked out. He moved, tossed and turned and we gave him more morphine. As the night passed his eyes were swollen shut as expected. That made him more mad and upset. We had our own issues with the nurses and the resident doctors, but at this moment all those do not matter at all. I could have stayed in NJ and had this surgery, but I came here because I had heard great things about this hospital. Well !! every place has its good and bad and I guess I will wait till the whole stay is over before I make any remarks on this whole experience.
Last night we just kept staring at Bumbum, trying to calm him down with his favorite lullaby. He reacted well to our voices. Today he has been a little better with the pain. He has slept better than last night. He has been very calm. We were moved from the ICU to the general floor. Again the nurses seem to be very unresponsive. But I will again wait for the whole stay to be over before I make any comment on this. We are sharing our room with another patient. What surprises me is that even when they see that there is a baby who is cranky at loud noises, how insensitive people can be. I have to make repeated requests to keep in down. The TV is loud; they have too many guests who just could not keep it down.
A little compassion for others can make this world a different place.
When Bumbum came home from the hospital we were too happy and relieved to notice something was just not right. We were just too happy to have him home and did whatever we could to make him comfortable. After a few weeks Junior came home and we just felt complete. But like every mom I kept on admiring the faces of my babies and that is when I noticed that Bumbum’s forehead just did not look right. It had a strange bulge and I could feel a strange bone in the middle of the forehead. I wondered if he had bumped his head on the sides of the crib and changed the crib bumper to a better thicker one. I thought that the bump will go away with time. But it did not. At the next pediatrician visit we brought this up with his doctor and he said that it might be from sleeping at one side. It will get better with time. Months went and his head shape just did not seem to get better. We changed pediatricians, asked the NICU neonatologists when we met them No one seemed to have an answer to us. But fleetingly someone mentioned a word “ridge” to me. I was really keen on finding out what this bone was doing in the middle of my child’s forehead. My husband was calm; he said that since the doctors are saying it will get better with time, it will. I just did not feel right about the whole thing. After I got home and got free from all the chores of the house I took my laptop out and tried to Google out “ridge on forehead”. And that is when I found out about CRANIOSYNOSTOSIS.
My little boy was suffering with something which is an extremely rare disorder. METOPIC CRANIOSYNOSTOSIS, which means the Metopic suture in his skull fused prematurely. I think it’s 1 in 2000 kids that get affected. My search for an answer did not end there. It was in fact just the beginning. By the time I found a name to the thing on his forehead, I got more nervous since all the websites talked about surgery. I had to find a neurosurgeon, and I won’t get an appointment till our pediatrician agreed. I played a small game, I told my ped that the NICU doctors were worried about his head shape and wanted us to go to a NS. Bumbum had turned 8 months when we finally got the appointment. I thought my whole confusion would end with the appointment with the NS, but this being a rare disorder no one knew much about it, yes not even this NS. I kept searching, talking to parents who had kids with the same condition, networking, getting in touch with experts, till I found one doctor in New York who is a big name in the craniofacial world. It took me another 2 months to get appointment with the plastic surgeon, another 3 months for the NS appointment. By the time we got a confirmed diagnosis and a CT scan done Bumbum was 13 months old. The only factor that all our doctors agreed upon was that this will not cause him any brain damage. They seemed to be very confident about this one point and thank God for that. Like our cosmetic surgeon Dr. Staffenburg puts it, this is not a brain surgery, this is a bone surgery.
There was a time I could not even spell craniosynostosis and now I know what any non medical professional can know about Metopic. I have joined causes supporting this rare disease and I have been in touch with many mothers who have been through a journey similar to ours. Most people get their kids diagnosed before their first birthday and majority of the surgeries happen in the first 6 months. My boy was not even diagnosed in the first 6 month of his life. Well all that is behind us and we are heading to New York tomorrow where he gets his surgery done. I have been through a varied range of emotions in the past one year. I have tried to reach out to anyone who I felt would have even an iota of information on this subject. I blamed myself for this condition till I realized that this is a spontenous thing. D or I had no hand in this. The main problem was that the medical fraternity has different views on the treatment. Some think that surgery is inevitable, some don’t. We got stuck in the dilemma of doctors. It was tough to come to a decision. What was awesome in it all was how strangers, moms and dads of kids having the same condition as Bumbum’s came together and supported us in this journey. I am truly humbled at this whole experience. Parents sent me pictures, emails, notes on what they went through. The verdict from the parents was common, go for the surgery. One mom called it a major surgery with a very low risk. I am not sure how the surgery will go. I am a mom who gets upset when Bumbum or Junior cries from the shots. I have no clue how D and I am going to face the coming days. I know it is going to be tough. Bumbum is going to be scared. He is going to sleep most of the time post surgery, but I am not sure how he will react when he wakes up. There are too many questions in my mind, but not many answers. Time is the strongest healer and with time it is all going to be OK. We have survived NICU. We will survive this too.
Snippets of Our Journey Together 