Category Archives: Metopic Craniosynostosis

Two and Half Years Post-Op

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.

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Two Years Post-Op

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.

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.

Day 2 Post-Op

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.