Post Surgery

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 ..

Day 4 Post-Op

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.

Day 3 Post-Op

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.

CRANIO… What? How do you spell it again?

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.