James’s Surgery

On Tuesday morning (October 27th), James had a cranial vault reconstruction. What this means is, two surgeons (neurosurgeon/Dr. Pittman and plastic surgeon/Dr. Liau) made an incision in his scalp, then cut and reshaped his skull. As James’s mother, this absolutely and completely terrified me to my very core.

We arrived at the hospital at 5:30 AM and checked in. Mom and dad were already there, which made it easier for me, but still not easy. Everyone at the desk was so kind and understanding when I was crying too hard to speak. About an hour or so later, Vince and I were called to take James up to pre-op. I’ve never shaken so hard in my life. We changed his little diaper and put a sweet baby hospital gown on him, then played for a long time on the gurney and in the rocking chair. He chewed on the rainbow hedgehog my sweet friend Sarah got for him and rolled all around, growling and talking–the best sounds in the world.

While we were in this room waiting, surgical residents for Dr. Pittman, Dr. Liau, and Dr. Van Wyn (his anesthesiologist) came by to talk to us and meet James (they all commented on his big smile, since it was nearly 8 and he hadn’t eaten since 12:30 the night before), and then Dr. Wyk and Dr. Liau also came by to talk to us. Everyone who came in to talk with us was so nice and gentle with this fragile momma.

Finally, a nurse came by. They gave James some Versed, so he wouldn’t remember being separated from us and wouldn’t remember the mask they’d put on him so he’d fall asleep. The nurse who took him cried when I did, and somehow, that made me feel a little better. She was a momma, too, and knew how hard it would be for me to let go of him when the time came. A little empathy goes a long way.

And then, I had to hand my baby boy over to this exceptionally kind nurse. That was the most painful thing I’ve ever had to do. My Aunt Linda told me before I had James that I would know when I was ready to be a mom when my arms felt empty. And she was right. We started trying for James because my arms needed a baby in them. But I’ve never felt such emptiness as I did when I handed him over to that nurse, no matter how wonderful she was.

Letting go of James left me with a deep, aching pain. I can barely describe it. It was like someone had ripped my heart out, only so much worse. Vince put his arms around me and walked me back to surgery waiting, and I felt like I was dying inside.

We waited for a while for surgery to actually begin. Once it did, I had another meltdown. It was finally real–they were going to cut into his scalp and skull and rearrange his skull. I knew, in the long run, this was what was best for him, but I also was terrified. They gave us a little beeper that told us when the surgery started, when the first doctor was through, and when to meet his surgeon for a post-op consultation. Two hours after that initial text, mom and I were sitting in Consultation 4 waiting for Dr. Liau.

Dr. Liau is a rockstar. He brought me a little baggy with some of the hair they shaved off (they only shaved a single strip, not all of it!) and told us he did great! He didn’t even need a blood transfusion, which was a major possibility. Our estimated date for leaving the hospital was Saturday the 31st.

We spent the rest of Tuesday, all of Wednesday, and part of Thursday in the PICU (pediatric intensive care unit) with some of the kindest, sweetest, most wonderful nurses. One nurse in particular, Katherine, was James’s favorite. Every time he saw her, he lit up with the biggest smile. She was with us two days and I am so grateful for her, and all the others, who took such good care of him and us while we were there. Thursday afternoon we finally got transferred to a room on the floor. (It would have been sooner, but construction is going on and a lot of rooms aren’t available that normally would be.) Our room was blue with a big light up turtle on the ceiling, which James LOVED. The staff in this wing was just as wonderful as the staff in the PICU. The nurses and techs who we saw were just so incredibly nice to us, it blew my mind.

We got to come home today (Friday) a whole day earlier than the EARLIEST predicted day. I’m so grateful for our early release, and James seems pretty happy to be home with his mommy and daddy and kitties. (We pick Juno up from her puppy hotel tomorrow, then we’ll all be back together!)

This has been the most emotionally draining, scariest, biggest weeks of my life. I’m so thankful for the doctors, nurses, and techs at UK Children’s Hospital. I’m so thankful for our pediatrician, Dr. Brown, and my momma, for catching this for us. And I’m so thankful the surgery part is OVER.

If it weren’t for Vince staying in the PICU with James the first night, mom staying with James in his room on the floor the third night (and helping me every step of the way), and daddy picking us up today at the hospital (because Vince was still at work) I would have been/would be even more of a wreck than I already was/am. My family is amazing. And SO many people have reached out to see what we needed, to share some love, to give loving, wonderful advice, that I just don’t know where to start with my thank you list. I wish I could bake every single one of you a dozen cookies! (Nothing says love like cookies.) Thank you all for everything!

We appreciate all of your thoughts and love and prayers so incredibly much! James is feeling better so soon thanks to the love and prayer he’s felt all around him this week. I can’t wait until he’s all healed up, and back to his normal self, but I’m so grateful for the way he is today! Thank you, all! ❤

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One Week & One Day

James’s surgery is in 8 days. One week and one day from now, this whole thing becomes real.

Until now, I haven’t let myself think about it all that much. I mean, when they scheduled the surgery I had almost a whole month before it had to happen. Now, it’s just over a week. This time next week, I’ll be packing for a week in the hospital with my poor baby.

I could probably still ignore it, except the hospital called today to make sure I knew where to park and had the right day written down and double check our family histories. No big deal, except now I have to actually think about it. I have to admit to myself that this is really going to happen. That my baby, my infant son, is going to ACTUALLY have surgery, and I am ACTUALLY going to have to hold it together during and after so that I can take care of him.

Part of me is worried about the surgery, but I trust our doctor’s, I trust UK Hospital, and mostly I trust that James is in God’s hands and will be just fine, no matter what. But mostly I’m worried about after. I’m worried about seeing James’s sweet face swollen, about hearing his disoriented cries when he wakes from anesthesia, about seeing his pain and discomfort as he heals. The thought of all of this makes me want to take him and run to save him from all of it.

But, logically, I know this surgery is what’s best for him in the long run. I know it’s better that he deals with this discomfort now so that as he ages and grows he won’t have cognitive delays, he won’t get picked on for having an abnormal head shape, and he’ll have a less emotionally painful adolescence. But I want to protect him NOW. I want to keep him from hurting, always. And I know that next week, I’ll have to hand him over to strangers, and that will lead to him hurting.

That being said, a lot of you have asked what you could do for us. You all have no idea how much the love and kind words you’ve shared with us have changed this experience for us. If you still want to do something, keep praying or sending good thoughts. Pray for his doctors, his nurses, and his anesthesiologist. Pray that he recovers quickly, that he isn’t in severe pain or discomfort. Pray that James is better than OK, that he comes out of this with the same joy and energy he goes through every single day with.

Our surgery is October 27th (a Tuesday). We’ll be in the ICU one day, and then in a room for four more days. I’ll post our room and things like that once I know them, if anyone would like to visit (if you’re sick, I have to ask that you don’t come, since he’ll be so delicate after surgery).

I love all of you, and appreciate everyone who’s talked to us, written us, hugged us, and loved on us. It’s helped me through the days I really wanted to take James and run away from the reality of this whole thing. My sweet smiling boy doesn’t talk, but I know he feels that love, too, from your prayers and thoughts and words to us.

In a week and a day, this will be real. Until then, I’m just going to soak up this sweet face, and cherish the las few days I’ll have with him looking this way, without a scar, with his atypical, beautiful head shape, and pray I can remember him like this forever.

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Sagittal Synostosis

Today we took James to a specialist in Lexington and he was officially diagnosed with Sagittal Synostosis, which is the premature fusion of the sagittal suture that runs along the top of the child’s head. Below is a diagram of a typical infant and an infant with sagittal synostosis. You can see where the sagittal suture (the middle, vertical line) has fused in the second image. James’s case isn’t as severe as the drawing, which is why it wasn’t caught earlier.

DIAGRAM

We’ve wondered if he’s had this for months. My mom caught it first, early on, and if it weren’t for her, we might never have gotten a diagnosis. We asked our pediatrician about it, but he told us not to worry. But I did worry. So much that we scheduled another appointment with him and pushed for an x-ray. We got the x-ray, but again, he told us not to worry. So I made another appointment with a different pediatrician, who immediately referred us to Lexington. Thank God.

My sweet, perfect, beautiful boy is scheduled for surgery October 27th in Lexington. The surgery will consist of opening up the top of the head and rearranging the top of the skull so that his head will round out, so he won’t have a major cranial deformity as he ages, and so we won’t have to worry about developmental delays due to pressure on the brain or not enough room for the brain. If our pediatrician had caught this earlier, and referred us, it would be a much simpler procedure–they would go in and open up the suture that had closed. But he didn’t catch it, and the suture closure is too far gone for that now. This means that we will have the bigger surgery the 27th with two doctors (a neurosurgeon and a plastic surgeon), be in the ICU for 24 hours, and be in the hospital at least four more days. Below is an example of a child’s head before and after surgery.

INCISION

I am broken into a million tiny pieces. My baby, my PERFECT baby, is going to have to go through surgery and I won’t be able to explain to him why it hurts, why he can’t eat for so many hours before we go, why he’ll feel sick and groggy and achey. I hate this. I hate every part of it. I hate that I can’t do this for him, that he has to go through it, and I’ll be helpless to sit back and watch.

I love my son more than anything. More than any person. More than any dream. More than ANYthing in this entire universe. He is my world, my heart, my everything. I want to take this from him, to make it all OK, but I can’t. I’m utterly powerless. So, in my state of having no power, no control, I want to ask for prayer. Please, if you pray, pray for James’s surgery, that it would go well, without complications, that it will work and not have to be repeated, and that he would recover quickly. Please pray for God to guide the doctors’ hands, the nurses’ hands, that God be with my boy as he’s being operated on. Please just pray for him in every way. I need him to be OK, to come this through perfectly, to be my sweet, laughing, happy guy again soon afterward. This feels like a nightmare, and the only thing I can do is pray, pray, pray, and ask for others to pray with me.

Vince and I are both scared, both terribly upset with the news, but we also have faith in God’s protection and in the two doctor’s who will be working on James in less than a month. Thank you to everyone who’s written us so far (even if you didn’t know what you were offering kind words for) or commented on the photo I posted earlier today. My family is so lucky to be surrounded by such beautiful people. And thank you in advance to anyone who will pray for James during this.

LINDS and JAMES