Wednesday, April 9, 2014

Skull Surgery

Last Monday was our first experience at Children's National Medical Center in DC. We met with Dr. Keating, the neurosurgeon who would be doing Henry's surgery. Of course we were nervous, but we knew that this is what needed to be done. I'm sure that compared to all of the other surgeries that Dr. Keating performs on a regular basis, this would be considered minor. But still, when it involves your 3 month old baby, it is all very scary.


At the pre-op visit, Dr. Keating measured Henry's head and calculated the ratio of width to length (cephalic index) as 67. Anywhere from 75 to 83 is considered "normal". The goal is that the surgery and further natural head growth will eventually bring Henry into the "normal" ratio range. It will also ensure that he will not have any intracranial pressure in the future, and that his brain will continue to grow normally. After Henry's physical and his blood work all checked out, we were given the go ahead for the surgery. It still didn't feel real. 

We arrived at the hospital bright and early on Thursday morning for the surgery. We received a thoughtful care package from Cranio Care Bears. My favorite item that they sent was a prayer chain made of ribbons with different inspirational quotes and verses on it. We ended up hanging it on Henry's hospital bed and it somehow made the experience a little more cheerful. I also loved the teddy bear with a bandage on his head.

I was surprised how happy Henry was that morning, considering that he was not allowed to eat for the past 9 hours. He is such a good-natured little guy. I held back all of my emotions as I dressed him into his tiny surgery gown and handed him over to the surgeons. It was all in God's control, as it always is.


I can't express how relieved I was when Dr. Keating came out and told us that Henry did just fine in surgery. But then I saw our swollen baby, looking so helpless, being wheeled from the operating room to the PICU. It completely broke my heart, but I felt so thankful at the same time.


Henry did remarkably well with the surgery itself and also with the recovery. He did have some swelling in his face on the first and second days, and he ran a fever on the second day. But aside from that, his incision was looking great and they sent us home on the third day. He has been a little cranky since we have been home, compared to his usually laid-back self, but for the most part, it doesn't even seem like he just had surgery!


Special thanks goes to my Aunt G, who stayed with Ryan for the first day and night, and also the second day, so that Barry could be with us in the hospital. Barry went home for the second night while I stayed there with Henry. 

Ryan has been asking about the "boo boo" on Henry's head. He says to him, "Don't worry Henry, it will go away after a long time". It is endearing to see the concern that Ryan has for his baby brother. He has such a tender and loving heart. I am so proud of our big boy AND our little boy.



So... I can honestly say that the cosmetic results were better than we had even hoped for. I was shocked to see how round Henry's head looked immediately after we took the bandage off. Supposedly, his head should continue to grow in an even rounder shape in the upcoming months/years. I am very curious (and hopeful) to see what it looks like in the future. I think that it looks amazing already! In the pictures above, you can clearly see the dramatic difference. I must admit that I have never thought so much about a person's head shape in my life.

God has truly answered our prayers by protecting our sweet baby and giving him strength to get through the surgery and recover quickly. This was such a humbling experience.




Sunday, March 30, 2014

About Our Baby's Head

When Henry was born, it was obvious that his head was not completely round. Of course, newborns often have strangely-shaped heads after making their way down the birth canal. And plenty of babies develop flat head syndrome (plagiocephaly) that can be fixed by wearing a helmet. But Henry’s condition is a little more serious than that.



A CT scan at 9 days old showed that one of the bones in Henry’s head had completely come together with another bone in his head. (These bones are called “sutures”.) This means that one of his soft spots had closed too early, while he was still in the womb. His head looks somewhat normal from the front, but you can definitely tell that the back of his head is pointy. The side view and top view show that his head is long and boat-shaped.

Henry's fluffy hair generally hides the odd shape, but you can really see it in the bath pictures.

The good news is that Henry’s scan showed completely normal brain growth and his doctors do not believe that he has any increased intracranial pressure. However, as his brain grows more, his head NEEDS to be able to accommodate it. If his head isn’t able to grow in a normal, round shape, it could cause future intracranial pressure and development issues. 

So that is why our sweet little guy will be spending his 3 month birthday in the hospital having surgery on his skull.

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While I am absolutely terrified to hand over our perfect baby to an operating room full of surgeons, I am trying my best to stay positive and focus on these things:

1. Thankfully, the neurosurgeon does not feel that Henry needs the most invasive open-head surgery (cranial vault reconstruction). Instead, he will be performing a smaller-scale surgery called the pi procedure. This surgery should take less than an hour and will require a 2 or 3 night hospital stay.

2. Although the surgery will leave Henry with a scar from ear-to-ear, the scar will eventually be covered up by his beautiful hair. (I was thrilled to find out that they will only be shaving a strip of his hair for the procedure, rather than his entire head!)

3. Out of all of the types of craniosynostosis that exist (yes, that long, scary word is the official name of it) Henry has the mildest form. He has none of the syndromes that can sometimes occur with it. He only has one suture that closed (the sagittal one) instead of multiple sutures. The type that Henry has, non-syndromic craniosynostosis, is considered to be “an isolated condition in an otherwise normal child”.

4. This condition is fixable and should not affect him severely for the rest of his life. Approximately 1 in 2,000 babies have this, and doctors have been successfully treating it and fixing it for decades. There are so many more serious illnesses and heart-breaking conditions that other children and their families have to suffer through. We are truly blessed, in that sense, that God gave us two very healthy children, and we will never take that for granted.

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When we first found out about this, one of my first questions was, “What caused it?” It is hypothesized that non-syndromic craniosynostosis is caused by fetal head constraint, meaning that his head got stuck in a weird position in the uterus and there was not enough room for it to grow in the correct shape. Some types of craniosynostosis are linked to genetics, but those are generally the more severe cases that involve syndromes.

Please send all of your most positive thoughts and prayers for our little one next week. Pray that the surgery goes smoothly, that he does not feel too much pain, that he recovers quickly and easily, and that he does not have to deal with any effects of this in the future (besides the scar, of course). At least he is young enough to, hopefully, never even remember the surgery itself. 

Also, please pray for Barry, Ryan, and myself, as we try to gather the inner strength to get through this week and next week. I know that the surgery is for the best, but I am scared that I won't be able to go through with it. Please pray that I can put my own feelings aside for the best interest of our child.

The pointy part of H's head is noticeable here.

I have honestly had a difficult time talking about this, up until now. Talking and writing about it somehow makes it more real, and it was simply easier not to think about. It is crazy that we are now just a few days out. In my mind, our happy, easy-going baby is one hundred percent perfect, and the fact that he needs surgery is just so hard for me to wrap my head around. I mean, that little guy holds my whole heart. The thought of him feeling any kind of pain absolutely kills me. I hope that we are making the right decision and that we will be able to look back and see this as just another obstacle.

I guess what they say is true about life being a series of peaks and valleys. Thank you all for your support.

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Saturday, March 29, 2014

Brothers When They Were Babies



It is interesting how Ryan and Henry seem to have very different personalities and complexions, but you can definitely tell they are brothers… just look at their little faces! THEY MELT MY HEART. In these pictures, R is 4 months old and H is almost 3 months old.

And of course, we can't forget our fur baby, Lucky! He's the oldest brother.  =)



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