So Far SO GOOD!!!

Thank you to my mom, Matts mom Julia and Keri for all their help the last couple days getting us packed and ready to go. Thanks to Matts mom who drove us to the airport to see us off. Which is what the picture above is from. We love all of you!

Today we headed out with SO much gear its stupid! Saying we overpacked is an understatement. But only on Hudsons stuff. Many many toys and clothes and books for the baby. I only packed 2 pairs of shoes for myself! Which those of you who know... thats pretty impressive.

I was really nervous about the flight because on our last flight to Dallas we both had head colds and the air pressure was SO painful! A lady even stopped us to ask if that was our baby who was screaming the whole flight. Yes, thanks lady it was. So obviously I was nervous. But as we boarded the plane we saw there was no room for Matt and I plus Hudson to sit together. So Hudson and I braved it alone. I promised the guy next to us if things went south that I would buy him drinks for the whole flight. Luckily for him, my wallet and the rest of the plane Hudson was as happy as a clam. Not one single fuss. He kept trying to snuggle with the guy next to us and play with his phone. But all in all it was a HUGE success. From that point on everything has gone SO SO smooth.

Tonight we ate like kings at a Mexican resturaunt. We found out Hudson has a liking to Mexican music when we looked over and saw him jammin out to a sweet salsa tune. So of course Matt and I joined in on the salsa groove in our seats. Then we headed to Walmart to get some groceries and supplies for the week. I told Matt that at least for tonight we are on vacation. We have just been enjoying eachothers company and enjoying our little family.

Tomorrow we have an appointment with the neurosurgeon but then I plan on much more family fun at least for one more day! I LOVE my family

"What I wish I would have known before surgery"

This was a post on the craniokids.org site that is such a great sneak peak of what to expect.

"What I wish I would have known before surgery""

~No matter HOW many photos I see of other swollen babies it is totally different seeing MY baby swollen like that! Even though I had been told this many times, I did not believe it and thought I was prepared. BELIEVE IT...IT IS TRUE!!

~Don't over pack...I lugged a million shirts with me b/c I was afraid that Quintin would puke a lot. He never puked and I only used 4 of the 15 shirts I packed!!

~Handing Quintin over WAS NOT the hardest thing to do (as I though it was going to be) WAITING for surgery was actually the hardest part. I was relieved to hand him over and get it done with!

~I didn't realize how tough it was to have Quintin's eyes shut for 3 days. All the photos I see of babies with their eyes swollen shut make them look so "peaceful" when actually they are SO frustrated. I learned to use my voice all the time and to constantly talk to Quintin so he could hear where I was at all times since he could not see me.

~I just happened to have Amy's phone number with me (little Camden's mom)...who had surgery at the same place with Dr. Fearon 5 weeks prior. It was so nice to be able to call her during surgery to confirm if all of my feelings were normal and to ask questions. Try to have one or two craniomom's phone numbers with you. I will offer mine to anyone who wants it...just send me a PM.

~I also did not realize how "jumpy" Quintin would be for a week or so after surgery. He basically had to regain trust in us that he wouldn't be hurt anymore. He had been poked and prodded and had IV's flushed and ripped out for 3 days all while his eyes were swollen shut. Therefore, he never knew if the next touch was going to be a good one or a painful one since he could not see. Even after his eyes opened, he wuld fuss with the slightest touch...even changing diapers. But, a week of very gentle handling reassured that the pain was over!!

~Yes...it IS normal to think, "Man...am I ever going to have "my baby" back???" and yes...you will!!! I promise!!

~Yes..it IS normal to think that perhaps the operation was a mistake right after surgery...and maybe into the first post-op weeks. I promise...you will change your mind and it is worth it!!

~I never knew HOW GOOD that first peek would feel once I looked down and saw Quinny's beautiful eyes looking back at me...then the first smile happened shortly after.

- Don't forget to think about YOURSELF! You need to make sure you eat, sleep, change and shower if you want to be able to be there for your baby

- Just because their eyes are swollen shut doesn't mean they are any different! Bring their favorite toys with familiar touches, smells and sounds. They are comforting.

- (especially for metopics) THEIR EYES WILL BE THE SAME SHAPE AGAIN!!!!!! It took MONTHS for Azia's big round eyes to come back and I had resigned myself that they were lost forever but they DO COME BACK!!!

- The swelling takes months to fully go away. Yes it does. Yes it looks like he/she is no longer swollen at 3 weeks but take a picture and look again in another month and you will see!

- Sleep will be disrupted. Yes it WILL! But it will go back to normal eventually!!! 

Don't know what I would do without these ladies!

Being Strong is Our Only Choice

Today I got our cranio care bears package in the mail. I was SO excited. Opening and seeing all the support, generosity just felt like a great big hug from people I have never met but feel so close to. THANK YOU Cranio Care Bears!

There was so much useful practical things we will need. But my favorite was ribbons linked together with cranio families messages to us. I found myself thinking about how this is a metaphor for these strangers being linked together through craniosynostosis. All these woman who I have never met have helped make this whole process a little less scary. There is something powerful talking to someone who has gone through the same thing. They know your fears, worries, anxiety because they have felt all of it too. Hearing their words of encouragement makes me feel like I am part of something hard yes, but special. The fact that they all have not chosen to just move on from their own situation but to continue to uplift other families is so inspiring. We are going to drape these over his crib in Dallas. In a way they will all be there with us. I want to share some of my favorites ...

• Don't tell God how big your problems are. Tell your problems how big your God is.
• Rainbows come out after the rainstorm.
• I can do everything through him who gives me strength - Phillipines 4:13
• You never know how strong you are until being strong is your only choice (my fav)
• Love Wins
• May the sun shine bright and a quick recovery
• Never fly faster than your guardian angel can fly
• Don't be afraid (from Logan a cranio kid)
• Angels are watching over you

Thank you cranio families! You are amazing

Acceptance ... Peace

We have a weekend and a half until we leave for Dallas! Needless to say my head has been racing! Leading up to surgery is the scariest part and I want to be sure to be as honest as possible about this journey. My hope is that my experience can bring peace or insight of what to expect for parents facing this.

So vulnerable here we go ...

I decided to go talk to a counselor (nice work for shrink) about my fears of surgery and try to get my mind as whole and strong as possible. She gave me a lot of great tips on how to handle certain things, how I can use the nurses at my advantage... But in the end I still left feeling unsettled. This whole time I think I was waiting for acceptance to come by all of a sudden realizing something. Some light bulb would go off to make this easier. Its ironic that the thing giving me peace is the acceptance of how hard this is going to be. Giving in to the realization that there is nothing anyone can say or do that will really make this easier. No one word or action that can take this away. The hard reality is no matter what, I have to face this and it is going to be hard. The hardest thing I have ever done!


I am not going to sit around and feel sorry for Hudson, Matt or myself. Matt and I have decided keeping our body and mind healthy and strong is the best thing. We have starting working out together not because I want to lose weight or even care right now what I look like. It gets the nervous energy out of me, helps me sleep better and endorphins don't hurt either. I am trying to do whatever I can to prepare myself and trying to keep my head up. Plus it makes us feel like even more of a team.

I am so glad I have found peace and acceptance. I really thought I wasn't going to get there. Of course I feel that way right now. Tomorrow could be different. Oh... the cranio coaster you are one wild ride.

If I had to put a positive spin on this journey I would say I honestly ... I am learning so much about myself and what I am made of, Matt and I have grown closer together and are a stronger couple. I appreciate and love Hudson so much everyday and take nothing for granted, its given me a new perspective on being a mom, melts my heart seeing Matt take on his role as such a strong father.  I now know without a doubt that our family can make it through anything. That this won't be the last thing that challenges us, thats life.  No matter what life throws at us we will work through it together, hand in hand.

Buck Up!

Today was Hudsons lab work and procrit injection. Matt went to the last one and knowing how squeamish I am with needles combined the difficulty of seeing your baby in pain, graciously said you don't need to go to these appointments. At first, I had a sigh of relief that to be let off the hook. Matt is so incredibly strong and doesn't flinch when it comes to hospitals. In fact he is a first aid responder. If anything should happen medically at work he would come to the rescue. Yep ladies, I've got a hero on my hands.

But the more I got to thinking about it... I shouldn't let myself off the hook. I need to step up and do the things that make me scared, squeamish, sad ... if Hudson needs me I need to be there. Its not about me or how I feel this is about Hudson. It doesn't matter how scared I am of needles or how it hurts my soul to hear him in pain, what matters is that I need to be there for him to comfort him and let him know everything is ok, mommies here.

So today was that day. I did not know that they would be doing more tests on him than ever before. In hindsight I may have gone to the next appointment and skipped this one lol. This time they had to draw 6 viles of blood! As the nurses came in and strapped the band around his little arm he looked up at them suddenly with fear knowing what was to come. He kept looking back and forth at them with fear in his eyes. If he could talk I swear he would be bargaining with them saying... I swear I'll be good guys. I will sleep through the night, I take my medicine, I will even officially crawl if you just put down that pokey thing. We can work out a deal ... he he he ehhhhh right guys?! His last officially plee was when he grabbed the nurses hand and gave the biggest puppy dogs eyes I have ever seen. As she said sorry little guy, he knew it was over. He puffed out his lip and gave a wimper of defeat.

Needless to say, 6 viles of blood takes some time. During that time there was a lot of its okay buddy, from me as I stroked his hair and a level of screaming that absolutely broke my heart. I couldn't have felt more helpless. As tears started rolling down my face I looked in his eyes and knew he needed me to buck up. He looked back and forth from me to Matt searching for some relief which neither could provide except just being there and being calm. Matt did save the day by providing binki which did comfort him a bit.

After the blood work was over we had to sit for a loooonnnnng time for them to test his blood before giving him his procrit shot. The shot he wasn't happy with, but in comparison was a walk in the park compared to the lab work.

So we made it through this week of testing. All done with that till... next week. YIKES! At least at that appointment it will just be 1 vile of blood work and procrit.

This was my first exercise in being stronger than you think you are capable of. Although some tears were shed I am happy with my performance. Which a performance it was. Acting like everything is okay, mommy is cool, calm and collected. You are okay baby, mommies here. But hey, he doesn't know that and that's all that matters. Being a mom doesn't mean you are as strong as a rock, just means your baby has to believe you are.

Ah HA!

Last night after my post here I went to the craniokids.org site. Often they are the only people who can really give me comfort b/c they share this experience. One of the moms said something that hit me like a brick to the head. The thing I have been struggling with isn't as much accepting surgery (although that is part of it). But I have felt like my dream of having a "healthy baby" was taken from me.

When I was pregnant I remember people asking do you want a boy or a girl? Or course I would respond I don't care I just want him/her to be healthy. I have always dreamed of being a mom. Picking out what names I would want for them even as a child myself. Imagine what they would look like, what our relationship would be like, how many I want ... I have always known I wanted to be a mom.

I never in my wildest dreams imagined we would be facing this. Part of what I struggle with is my dream turning into a nightmare. My idea of perfect being shattered.

I remember when I was first pregnant and not wanting to get to excited about it. I was worried that if I was too happy it would somehow be taken away. That all my dreams were coming true and it was too good to be true. When I met Hudson it was the greatest moment of my life. I finally let my guard down and let myself be deliriously happy and considered myself the luckiest woman in the world. All my dreams really did come true.

Then just like that, BAM! Wake up call. We are facing surgery and a condition that possibly requires multiple invasive skull surgeries.

I have always felt that my little boy is perfect. He is perfect to me, he is perfect for me. He is everything I dreamed he would be and more. But I have to admit this situation is less than perfect. I would not wish this on anyone. Yes it could be worse... but it could be better. I am going to let go of all these could be, should be, unfair emotions but first I have to acknowledge them.

Hearing all the cranio moms saying they have felt the exact same way, they do feel the same way right now as they themselves are getting geared up for surgery is so comforting. I have received so many we are here for you, we feel your pain emails that means so much to me. They have said these weeks leading up to surgery will be really hard and a roller coaster of emotions.

I want off this ride!!!

Thank you to all the cranio moms out there. I don't know how I would do this without you!

Acceptance

"Acceptance is the acknowledgement of reality as it is, not as we would like it to be. It is our inner nod to the universe that expresses our understanding of our circumstances exactly as they are. When we finally accept, we place ourselves on the starting line of the journey ahead of us and make the mental room for the needed planning."
-Laura Posada

"Acceptance is a person's agreement to experience a situation, to follow a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest, or exit"
- Wikipedia

I have been searching for acceptance. Accepting this feels like surrender which is not something I am accustomed to. Giving up is not in my nature. Accepting the fact that my baby is going to be going through this is just not acceptable. I worry about not only the obvious physical pain, but the emotional distress is something I am really struggling with. The fact that he isn't going to understand and he will be so scared. Learning so much fear at such a young age is just tragic. He is such a happy little boy and the joy to my life. The fact that I can't take this away and protect him from this literally makes me sick. How can I accept this?! I keep picturing the moment where I attempt to surrender him over to the doctors and all I can picture is me running out of the hospital with him.

I of course realize that whether I accept this or not it is reality. All we want as parents is the best lives for our kids. I would do anything to give Hudson the best life possible. I just HATE that this is the only way to do that. I literally wish I could go through the operation for him. I want to protect him. How is it possible that protecting him also means putting him in harms way? Its unnatural.

This is going to shape part of who is going to become. I know that he won't likely remember this. But kids are little sponges. He is going to learn fear, real fear. What does that do to a person at this age?

I understand the definition of acceptance ... the acknowledgement of reality as it is, not as we would like it to be. And I know what I have to do. Surgery is right around the corner. Watching the days slip away and weeks flying by is very scary. I am taking comfort knowing we aren't doing this alone and am so thankful for all the prayers sent our way. Don't forget to say a big one for my little guy on Dec. 14th! And maybe one for mommy and that I don't run out of the hospital with him instead. Yeah, acceptance ... not there yet. I'll work on it.

Love,
Jen