We're On the Other Side!

I was told that nothing can prepare you for when you see your child after surgery for the first time, and they weren't kidding. It was heart breaking, but so wonderful at the same time. We got into the Pediatric Intensive Care Unit to see him at 2:45. He had fought them quite a bit coming out of anesthesia, but once they found his binkie he calmed down pretty quickly.

So many cords and tubes and monitors. It's amazing what such a little body can take. He had to receive some blood during his operation, and he looked so pale when we first saw him. He has a tube that comes out of his head behind his ear that drains blood and fluid from his head. He is on Morphine and Lortab for pain.

He wanted to eat right away and we could give him small amounts of juice with a 30 minute break in between to make sure he could keep it down. He was so eager that he took the juice from me and took matters into his own hands.

There are not words to describe the feeling I had when they put him in my arms. Pure joy and peace, the world was right again. He had some more juice and then 3 ounces of formula. I held him for a while, then I noticed that his breathing was getting really fast and shallow and that he was feverish. We got him back into bed and they took his temperature and he was 103.5. After keeping him cool for a bit and consulting with the resident physician they have just been watching it. He is now down to about 101 degrees. Our anesthesiologist just stopped by and told us this is normal when working near the brain. It still scared us quite a bit.

It's been a long day for all of us, and I'm sure a long night is ahead. The nurses agree that he is doing better than average which is great to hear. He hasn't been too fussy, he's getting some color back, the swelling is mild at this point, and his pain seems to be under control. We are so grateful for all the faith, fasting, and prayers that have brought us to this point. We'll continue to take each day a few hours at a time. Isaac is so strong and so patient with all the he is having to bear.

Surgery Day Has Finally Come

Here we are. It's crazy to think that we are at this point and we are SO grateful that Isaac is healthy and we are as ready as can be. Grandma Blake arrived a little before 5:00 this morning to take care of Alyssa, Jeff and Josh. She is so sweet to us and so willing to do whatever needs to be done so that we can focus our energy on helping Isaac.

We got to the hospital a little after 6:00 a.m. and got all registered. A little while later the nurse called us back to do his exam and make sure he is ready to go.

One more shot of that beautiful head before it is changed forever.

Grandma Barnes walked him around the waiting room, he looks so cute in his hospital pj's. He was getting very hungry, tired and cranky.
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Dr.Siddiqi came in to explain things again and answer any questions. He also took a few pictures for him to have as reference. He has a very calming feeling about him and we know he is in the most capable hands.

Saying goodbye was tough, but we got through it. Lots of hugs and kisses and a lot of tears. It's hard to think about what will be waiting for him when he is done. We came to the waiting room and claimed our own little cubicle. Now we wait some more and try not to think too much about what is happening with Isaac right now. Be strong precious little one - you are loved.

Final Preparations

We went to Primary Children's on Sunday afternoon to get Isaac's bloodwork done. He did so well. He got an ankle bracelet and a sticker on his thigh that had to stay on until surgery.

Alan got to hold him while the phlebotomist drew his blood. It was some kind of wrestling hold so he wouldn't turn his head. She said Isaac had "gorgeous" veins. He cried for a bit, but it was over quickly. He looked up at the TV screen when she was done and started laughing at the cartoon that was on. She said that was why she loved working with kids, they get over things so quickly.

Afterwards we went to Grandma and Grandpa Barnes' home and Grandma made us a delicious dinner. We relaxed for a bit and tried to calm our nerves. Great-Grandpa Barnes was there and he shared his walker with Isaac. We are so grateful for family.

First Haircut

We had a great Saturday preparing for Isaac's surgery. Lots of cleaning, shopping and organizing. Isaac loved playing in the backyard as we planted a couple of new trees. Our niece and her husband came over and helped a lot - they also took these great pics!

After dinner it was haircut time. Isaac went first and he did great! I didn't think he really had much hair, but he sure looked different to me when he was done. Still adorable! There was a beautiful little pile of red hair on the ground when we were done.

Alan wanted to cut all his hair off as well. Jeff and Josh wanted a buzz, just not quite as short. In the end we have four handsome fellas! It made this operation seem so much more real when I actually cut off his sweet little bit of hair. I guess we're really going to do this.

Understanding Hearts

It has been so good for me to have found a couple of places online I can go to hear other mom's stories and to have questions answered. I have learned so much from these women and felt so much love and support from them. I found this poem written by another cranio mom. She does a great job at explaining so many of the emotions involved. I have been blessed that my faith in a loving God has never waivered, but I sure have found myself reaching more deeply than before to find and hold onto His love.

Confessions of a Cranio Mom

by BabyGabey

I Cry.
It might not seem like I do because most of the time I wait until everyone is asleep. Then I use the darkness of the night to hide my tears. Like a baby I cry myself to sleep and I silently wish the tears will wash all of this fear away.

I Obsess.
I research and I read and I blog until my eyes bleed. My poor eyes. I can't learn enough... can't know enough. I keep on searching for a different/better answer when I know I have already found it.

I Hate.
I'm not a jealous person but why is this happening to my precious baby and not yours. It isn't fair, it isn't right, and I hate the fact that you are so happy and I am so unbelievably scared.

I Doubt.
I doubt my decisions, I doubt my surgeons, I doubt my motives, I doubt my faith. It's amazing how someone who once was so strong can crumble into a million pieces so quickly.

I Wait.
For answers... for appointments.... for surgery..... for acceptance... to finally shout from the rooftops "we're on the other side".

I Stare.
At your head, at their head..... At the waiting room wall..... At the Ct scan... at the surgeon when he says "craniosynostosis".

I Deny.
I make yet another appointment in hopes that someone will reverse the original diagnosis. This can't be happening.

I Worry.
About everything. Developmental delays.. ICP... what other people will say.... your vision...Your blood count... Anesthesia... Second Surgeries... will it ever stop?

I Pray.
For guidance, for peace, for my life to return to normal. For a successful surgery for you and a successful surgery for all.

I Cry Again.
I never knew that happiness could bring so many tears. You smile at me behind all of your bandages and wires and I melt into the floor.

I Grow.
Not only as a mom but as a person. Your journey and strength changed my life for the better.

I Overcome.
The fear, the anxiety, the tears, the hate, the doubt, the worry.

I Love.
My baby. My cranio family. Your successful journey and the beautiful life it's become.

One Week to Go

It seems like we came to this point so quickly, but also that we still have a long way to go. Everything is starting to feel much too real and it's time to really get ourselves ready. I have started lots of lists - for Isaac at the hospital, for me at the hospital, who is taking care of the kids at home and when, meals for next week, shopping lists, and questions to ask before we go in. I have a class tomorrow at Primary Children's for parents of children having surgery. I think it will be good to know more about what to expect while we are there.

I feel a lot of things I haven't felt to this degree or in this way before. This is a new kind of fear. Isaac is so precious to our family and it is so hard to know that he will have pain and scars and recovery to deal with. I'm grateful that Alan and I carry the fear and anxiety of going into surgery instead of him. I'm grateful that we will also be the ones dealing with the shocked looks he will receive as well. I know he is strong and resilient and that he will fight his way back to normal. I look forward to his first smile when it is over.

I have more fears than I can list, but I'm doing my best to keep them all in check and be strong for our little family. This surgery is affecting each of us and I need to be sure to be sensitive to that and not add to the fears of my husband and children.

I want Isaac to be able to look back at this journey and feel proud of his family and feel our love for him, and mostly to be proud of himself and know he is so strong and so capable of handling whatever life may bring him. He is a gift.