A Week Ago Today

A week ago today was Hudson's cranial vault remodel surgery.

A week ago today I was being tested on a level that is unnatural, terrifying and that shook me to the core. A week ago today I surrendered my baby over to doctors and God and held to my faith tighter than I ever have before. A week ago today... I almost lost the most precious thing in my life, my only son.

Looking back I can't help but revisit those emotions when I think about what we went through. It all happened so fast and was so unthinkable that we couldn't process it all. But looking at today I am so amazed at his progress. We got our baby back! He is learning, playing, laughing and being the same sweet boy he was before. He is struggling with some battle wounds as we all are. But he is making progress!!! Such huge progress. You would not look at Hudson today and think a week ago today he was that same swollen boy in the pictures. I am still adjusting to his new look. I loved my baby before and I love him now. But he does look different and that is a fact. To me its not better or worse just different. We are still in transition with his swelling going down which will take months.

In fact we will not know how successful the surgery was until Hudson is 18 years old. But none of this was ever about looks to us. It was simply to allow room for his brain to grow. Luckily he is the cutest little boy ever and he is just as cute now as he was before and will be a handsome young man later. More importantly he will be allowed to grow into a smart young man with all the opportunities everyone else has.

A week ago today I could not have pictured he would be healing and adjusting so well. I could not possibly have imagined how relieved we would feel to just be able to enjoy our baby. Enjoy our first Christmas! Today I can see my prayers have been answered! I can't ask for anything more and I will allow no less than a bright future for him. Now he has that chance. Thank you God, doctors, family and friends.

Love,
Jen

A little help from my friends

So this is what the "other side" looks like. I am no longer consumed with thinking about cranio 24/7. I can finally see the light at the end of the tunnel. It was an odd feeling as we were leaving the hospital. Almost bitter sweet in a weird way. I told Matt as we were leaving it was a surreal feeling. All the times I thought about surgery and imagined what everything would be like I was never able to see this far down the road. Never thought about the moment when we were leaving and we could start to move on.

Does the other side have its challenges? Of course! I would be lying to you if I said its easy. Hudson is having some post traumatic stress which is completely understandable. Hell I think both Matt and I have a bit too. Hudson has to be held all the time and see me at all times. He is more jumpy and scared than he used to be. What about sleeping? This kid was never a fantastic sleeper and now Matt and I joke he is a vampire b/c he just doesn't sleep. He cat naps at best. When he does sleep he wakes up in a frantic screaming. Many of the cranio moms call them night terrors. I can only imagine how Hudson feels. He went to sleep and when he woke up couldn't see, his head was enormous, he was poked and prodded at all hours, he heard beeping and alarms, he had iv's and wires in him, throwing up, nurses cleaning his incision... I can't blame the kid for being scared to go to sleep. The only comfort he had was us. Having my mom in Dallas with us was such a life saver. Being able to step out and be human...breath, cry, gather yourself back together and be mommy again. THANK YOU MOM!

It is certainly trying going on no sleep with a fussy clingy baby but this I can handle. All I have to do now is be mommy and that I can be. I am no longer helpless. I can comfort and walk up and down the halls, bounce and pat his butt all day and night, sing and read books... which have been doing 24/7. We really have no time to just sit and rest.

But I am the luckiest girl in the world with the best support base I could ever ask for. Thank you so much to my friends and family. Really you have made such a big difference to us. All the messages on Facebook made me realize we aren't alone in this. A big thank you to my sorority sister Loren who lives in Dallas and just showed up the first night we were in the PICU with goodies and a big hug. It was such an amazing surprise. I am horrible at asking for help and it was amazing that she didn't ask and just came. That day was made a little easier by seeing a familiar face and a hug goes a long way. The next day they brought us dinner. I looked forward to it all day knowing I would get a chance to just be normal for an hour. Get out of the hospital room and eat with friends. THANK YOU! Thank you to Morgan, Jon, Ashley for: making us food, organizing my tornado of a house, elevating Hudsons crib to keep swelling down. I can't tell you what it meant to us. Thank you to Matts mom Liz who cleaned our house from top to bottom so that when we came home all we had to do was help the baby. Thank you to my mom who came over at 5:30 am yesterday so Matt and I could sleep. Thank you to my sister and Troy for spending the day with us yesterday making Christmas cookies, watching movies, holding the baby to relieve me. Thank you to Julia and Curtis for watching Reece while we were gone.

I know I am forgetting people but overall I just wanted to say THANK YOU from the bottom of my heart. I feel so incredibly blessed to have such amazing people in my life. I couldn't ask for anything more. I now have a healthy baby, wonderful husband, amazing family and friends. I consider myself to be one of the luckiest women in the world. You really do get by with a little help from your friends. We wouldn't be in one piece right now if it weren't for you.

Thank you to Hudson. He has taught me: unconditional love, courage, perseverance, patience, and best of all how to be a mom. He has made me realize that I am braver than I believe stronger than I seem,
and smarter than I think." Pictures say a thousand words. The pictures above make me so incredibly proud to be his mom. What an incredible little boy. How lucky am I! Thank you God.

One Step at a Time... One foot in front of the other

"One step at a time, one foot in front of the other" as Neal told me (a fellow cranio parent). That has become my mantra through this.

I will start from the end and go to the beginning of surgery...
Today Hudson is doing great! They had warned me "today will be HELL". But finally we got some good fortune and since Hudson has been happy as long as he is being cuddled. Not too surprising really. His eyes are swollen shut and he is past the point of recognition. But all in all he is doing so great and I am so relieved. Looking back from yesterday this is such huge progress. We are out of the pediatric intensive care unit, Hudson's numbers look great, and he isn't plugged up to machines. At last some peace.

Yesterday ... well it was hell. I'm not going to sugar coat it. It was actually worse than I could have ever imagined on many levels.

As we came to the hospital at 5:30 am, I was of course a nervous wreck but holding it together for Hudson. I had been awake since 3 am just holding him and watching him sleep. While at the hospital and going through all the different holding rooms, checking vitals for 3 hours ... I was fighting back the tears. I knew his eyes would swell shut and didn't want the last thing for him to see was me crying. It wasn't until we were getting ready to meet Dr. Fearon and Sacco that the nurse looked at me touched my arm and said don't worry these are great doctors he is going to be okay. I think it was just that touch of the arm that I LOST it. I was crying so hard I couldn't see. Normally they give the kids anxiety meds before we release him but he was so happy with flirting and clearing winning over the pretty nurses that they said he didn't need it. They were fighting over who got to take him back by the time Hudson was done with them.

As I handed him over was the moment I learned true surrender. I had chose the best team and had to trust in them and God. For a moment it felt freeing. Finally I didn't have to anticipate surgery. We ate breakfast and then I just shut down. I found a couch curled up in a ball and didn't move except when Matt would talk to the nurse about how Hudson was doing.

When they said we were ready to meet Dr. Fearon and surgery was a success I sobbed with relief. We met Dr. Fearon and shortly after saw Hudson. The first time was a mix of emotions. He didn't look as bad as I planned but still you can't plan for that. Overall though we were happy we were "on the other side" finally.

We were in the PICU. They went over the risks, rules... One of the risks, blood transfusion. But she said I can't remember the last time we did one. Don't worry. We did 7 craniofacial surgeries today. A couple hours later his hemoglobin # was down to a 7. She said at 6 its considered life threatening. A woman came in and said we would need a blood transfusion. We were a bit upset b/c we have done months of shots, blood draws and iron supplements hoping to avoid it. But accepting it was best for the baby. I expected to get the transfusion within the hour. But there were disagreements between the doctors on doing it or not. I expressed my fears with waiting. Hudson started to go very pale. The nurse assured me he was fine. I pushed the nurse button several times expressing my concern. She checked it again and said it was a 6.3. I got more and more upset about what we were waiting for. There was a moment she raised her voice and told me I needed to trust in God and and the medical team. Well the medical team had lost all my trust at that point. I didn't care what they thought. It wasn't until I started sobbing hysterically b/c Hudson had lost all his color, was motionless, he was shaking and hardly breathing that they took me seriously. I really felt I was losing him. I was so scared he would stop breathing at any moment and felt so helpless and terrified... not the right word. There is no word. That moment will forever be stuck with me. The lowest moment of my life. Hudson was at a 6.

Within 30 minutes of getting the blood transfusion color started returning to his lips. I knew then my baby would be okay. I am still pretty shaken up by that and am constantly wanting his vitals checked with any suspicions I have. I have no problems harassing anyone anymore. The BIGGEST lesson learned with that experience is no one knows your baby like you do. They may be the professionals and I respect that but this is MY baby. I won't let anything happen to him and if you stand in the way you are getting momma bear.

I am so amazed with Hudson's strength and courage and we have been showering him with so much love. I think he has layed in the crib for only a couple hours total. The rest has been resting in our arms. I am never letting him go again. I thought I was going to lose him once and am never letting him go again. Poor kids is going to be SO spoiled. I love him with all my heart and more.

Tomorrow is the day!

Today was so long. We had appointments from 9am - 4pm doing measurements, drawing blood, telling us what to expect ... and a lot of it was waiting and waiting. It was a long hard day. One of the nurses said something that stuck. She said, this is a major surgery but the only surgery that isn't major is the one done on someone elses child. When they went over all the risk factors with us and told us what to expect its enough for a sane person to go running out of the hospital and never look back. Trust me, I thought about it once or twice. I even promised Matt we would go straight to Disney Land if we chose to opt out of this.

But in the end we know this is what will give Hudson the best life and no matter how hard it is going to be it is short term. This will change the rest of his life. So after our appointments today we picked my mom up from her hotel (she flew in today to be with us). Then we went to eat at a Mexican place. I LOVE Mexican food if it isn't apparent already. We had a great time and I am so glad that she came to be with us.

Once we got back to the hotel I started with our bedtime ritual. Normally its bath, books, songs, bed. I made it until songs. Then I just broke down. It is impossible to not feel like this is goodbye. I know in my mind that its not, but in my heart it feels like it is. I knew it would be hard but ... the thought that this could be the last time I see him, kiss him, cuddle him, love him... is too much. The reason we came to Dallas is because he is the best. He WILL bring my baby out of this. But there is a chance.... and to a mom even if that is 2%, that is too much. With any surgery brings risks, fear, doubts... I am just feeling all of those right now and feel very scared. Part of you thinks, his condition can't be worse than the surgery he is going to have to endure. I am sure he will live a happy healthy life if we just don't do it. Of course that is fear talking and fear is very powerful.

Tomorrow we have to be at the hospital at 6:00 am. From there we will start the process of talking to all the doctors again and start to put him under. Matt and I will be able to be there until he falls asleep and then we can say our "goodbyes". I honestly don't know how I am going to be able to leave him there knowing whats going to happen. I know the long term results and that is why we are doing this... but the short term danger simply scares me to death. For tonight though, I am just RAW with emotion. No one should have to go thought this although I know many have followed before me and many will after.

I will do my best to update this tomorrow.

I will see you on the other side.

Strength, Wisdom, Protection

Today we met with our Neurosurgeon, Dr. Swift at Children's Medical City. We waited for an hour in the waiting room. During that time a little boy who was so full of life was zipping around on a scooter. He came up to me and asked if I would help him take off his hoodie. After I did he said, thank you mam may I kiss your hand? After that I was all his. I asked what his name was but he looked over to his mom with a confused look. She said he doesn't hear well. I could tell that was just one of his challenges but you wouldn't know it by his sweet optimistic demeanor.We played tick tack toe and other games while we waited.

Our meeting with Dr. Swift was brief but I feel confident that he will do a wonderful job. He told us about the risks for blood transfusion but that we have done all the precautionary steps to try to avoid it. He told us his role in surgery... to take the skull off his brain and put it back on after Dr. Fearon reshapes it. He told us what a happy sweet boy we have and he said he liked the name b/c he lived near the Hudson river for a long time.

After the appointment I was feeling a little low with the reality of it all. Even though I didn't learn anything new at the appointment the gravity of the surgery was weighing heavily on me. We went to eat at Panera. While we were eating an old man came up to us and told us what a blessing our child was. Hudson was sleeping in his carseat and all bundled up so you couldn't even see his face. Then he told us that he recently got out of the hospital for cancer that he shouldn't have survived. He gave us a card that says "God is with you... Rain or Shine. Never Will I leave You. Never Will I forsake You." He told us how God has touched his life and again said what a blessing our beautiful baby is.

After he left Matt and I looked at each other a little shocked. I asked if he had told the man about Hudson? He said no. We sat a little surprised. As we went to leave the old man again stopped us and told Matt how blessed he is to have such a beautiful wife (good taste) and beautiful baby and that God is important in our lives. As we went out to the car he gave us 3 pieces of paper that were prayers. Prayer for Strength, Gods Promise of Protection, Prayer for Wisdom.

Part of the Prayer for Strength that hit home to me was ... Lord I am so tired. I just can't do this anymore... That's right. You can't. Now... will you let me?

I just feel very humbled by the whole experience. I kept thinking how did this man know exactly the 3 things we need most are strength, wisdom and protection. I'm humbled and amazed!

Please keep the prayers coming because they are being answered.

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

Unconditional Love

"Being deeply loved by someone gives you strength, while loving someone deeply gives you courage."
-LaoTzu

The day that I looked into his eyes was the day I discovered what unconditional love means. I feel so blessed to be lucky enough to feel something so real and pure. I would do anything to protect that, to protect him. We are 4 weeks away from surgery and I have realized its time to get strong.

When we first found out about our sons diagnosis we felt very scared, alone and helpless. We had never heard the word craniosynostosis before, we couldn't pronounce it, we didn't know anyone that had ever been through it. Honestly I felt a little ashamed in the beginning and wanted to hide it. I was terrified of the surgery! It hurt me when people found out and started studying his head looking for the imperfection. My whole life I have been aiming for perfection in anything I do (although Im FAR from perfect), I felt like a failure.

Along this journey we have realized we are anything but alone. We are so incredibly overwhelmed by all the love and support from family, friends, strangers ... THANK YOU. Many of you have had a huge impact on how I have gotten this far. I have started to see that maybe this happened so that I can make an impact on craniosynostosis awareness and help other families. I felt we made headway this last Friday at the benefit, Chicks Dig Scars. Thank you so much for coming out, for your donations and most importantly your love and support. It exceeded our expectations and I am so happy to have that memory to take with us to Dallas. We are so incredibly blessed to have such amazing people in our lives!

Several people have said how strong I am. Honestly that always throws me b/c I have been called a lot of things but strong has never been one of them. I have always been the one being taken care of, kind of a scared little girl. But now I have someone who really needs me. Recently I have realized it doesn't matter who you have been in the past, but what you are capable of being. By being strong for him he will find comfort that everything is going to be okay. I am starting to dig deep and be what he needs me to be. I love him so incredibly much I would do anything for him. I now know what loving unconditionally really truly means, being willing to do anything and loving someone no matter what the cost or sacrifice. He is going to make it through this and so will we. This will make all 3 of us stronger. Nothing has ever come easy for Matt and I but it has always been worth the fight. No surprise that this will be the same.

Good thing we are fighters!

Fox 4 Interview

Collectors Items ... Hospital Bracelets?

We have been guilty of wanting to hold onto every little thing related to Hudson ... like many parents fall into. Keeping even the little things makes you feel like you can hold on to those cherished, fleeting moments. Yep ... HORDING! I have always been one to throw away everything, until becoming a parent. Its a sickness! I remember when we got his first hospital bracelet we said we better keep this for the baby book. Even the second, third. But now we have a growing collection of hospital bracelets and its time to start tossing.

He had his first round of blood work today, poooorrr baby. We met with the hematologist and had his first round of blood work today. We will be having appointments once a week to give him shots of procrit to increase his blood cells. Then they draw blood to test that the procrit is working. A very important step leading into surgery so he doesn't loose too much blood. We will also be giving him iron supplements. This is really happening soon! Surgery is 6 weeks from today. Man my fingers just stuttered as I tried to type 6 months vs. 6 WEEKS.

As I picked Hudson up from daycare all the kids gave him hugs and kisses goodbye. Although Hudson is the little super star of daycare, this was extra special treatment today. It melted my heart to know they all knew he had a rough day and although I couldn't be there to comfort him that he was in great company. Those kids LOVE him.

That is something else we have been collecting... lots of love and support. THANK YOU so much! I can't tell you how much it means to us to have your support. Family, friends, co-workers and strangers!

We will be surrounded by everyone in one big room very soon due to the benefit next Friday.
We are really looking forward to seeing everyone there! I plan on collecting lots of hugs that day and taking them with me to Dallas to give to Hudson. It will be so nice to have that memory to reflect on when we are so far away from everyone.

Lots of Love back at cha!
The Ravens

SLEEP!

Friday our pediatrician told us to get Hudson tested for Strider, a breathing condition separate from. This is unrelated to cranio. Strider can be something really small that can easily be treated. BUT it could also mean another surgery before the cranio surgery.

Oh Yeah... I had a breakdown! Full on dramatic, embarrassing breakdown. And ya know it never happens in a place that is acceptable for breakdowns. Wheeeere did I decide I had finally had enough and couldn't take another medical issue. At work! Yep at work!


Soooo... after my pathetic F the world, F medical problems F THIS! We found out on Monday he does not have strider. So I rejoiced and then my blushed cheeks thought, maaaayyyybeee I over reacted. Just a tad. LOL. Thank you to Schylur who pulled me together at work ... again! Thank you to Erin, Morgan, Audrey for letting me vent and ramble and F the world. Thank you to Shawna who told me her daughter just had it and talked me through what they did and what to possibly expect. Thank you to Bri and Kyle for letting us crash in on your dinner at Panzons when Matt and I decided we just needed to get out. Thank you to pooooorrrr Web who drove to Maloneys only to realize the next day we never went there! SO SORRY!

So after all of this Hudson is NOW sleeping through the night! I swear a light has turned on inside me and the crazy has checked out. Turns out 7 months of no sleep effects your emotions. Who Knew! LOL. Now in the light of day I feel so amazing. My spirits are lifted and while I still can't take another medical issue right now with Hudson I am as prepared as I will ever be for surgery. Well.... at least today.

In the meantime fuuulllll speeeeed ahead working on the benefit. 14 days away! So excited to see everyone come out and enjoy a night on the town with us before surgery. As the marketing and advertising woman in me I will tell you GO GET YOUR TICKETS! www.chicksdigscars.org
On second thought, maybe that's why I am not running communications. But for reals we need to know head count so we plenty of food. If you can just come for a drink or want to have a night on the town, your support means the world to us!

See ya soon!

Successful Doctors Visit ... Everything Happens For a Reason

 I could not have asked for a better doctors visit!!!

I was filled with anxiety when we showed up to Medical City. I had promised the ladies with WCF (the World Cranio Foundation) that we would stop by before our visit. They were so wonderful and a I shed a couple of nervous tears with them before heading to our appointment. The gave us a quilt took some photos of Hudson and were kind enough to let us change his stinky butt in their office! LOL.

As soon as I went into the waiting room I saw a couple faces I recognized. They were a couple from Kansas I had never met them but was told about their story through my friend Keri. SMALL world! What are the odds? They were so incredibly calm and reassuring to us and they were the ones going through surgery tomorrow. Incredible people! After their appointment they said everything happens for a reason and to stay in touch and we fully plan on it. I am so taken back by their strength and kindness.

There was another man who has a type of cancer that has only been seen 50 times in 10 years. Doctor Fearon has given him 5 more years than he was expected to live. Hearing his perspective on why things happen, how blessed he felt with such a full life and if it was his time to go that he knew where he was going. He rambled off the most beautiful prayer off the cuff for Hudson before his appointment. He said I don't know where that came from it just rolled out. He also said Everything Happens for a Reason.

That waiting room was so full of love and reassurance, it truly was spiritual. It took me back to think ... really WHAT ARE THE ODDS?

What are the odds that we found Dr. Fearon?
If anything different happened along the way we would have been with a doctor who wouldn't have given the best results. The way cranio surgery is performed is NOT created equal. The procedures and results can very dramatically from surgeon to surgeon.

If our pediatrician hadn't caught it when she did, if we didn't meet with the KC plastic surgeon who referred us to Dr. Fearon instead of going with a local surgeon ... Hudsons outcome would have been completely different! We owe the big guy upstairs a HUGE thank you for leading us through this. Everything Happens For a Reason and I am so thankful that I am now able to step back and see that while I don't have control over this situation, that someone bigger and better does.

Meeting Dr. Fearon was so amazing. I am incredibly confident he is the best and only surgeon that I want for Hudson. Everything he does is in the best interest of his patience. He told us about the procedure and WHY he does everything he does. The things he has learned from experience and research. I had a whole list of questions but he answered before I even asked plus more. He is truly a brilliant! He will track Hudson and said "I want to grow up with him".

I have never felt better about all of this than I do right now. Our date is Dec. 14th!!! I am so ready to have all of this behind us.

About Craniosynostosis

Glass Half Full

“Some people see the glass half full. Others see it half empty.
I see a glass that's twice as big as it needs to be.”
― George Carlin

Today the glass is half full. In the light of a new day I am making myself focus on the fact that we are going to be done with this so much faster. Just trying to imagine what it will feel like to have this off our shoulder. I might be getting our surgery date today so I am carrying my phone around with me all day like a desperate girl waiting for her crush to call. Checking my phone to make sure its really working. lol. I've decided waiting till 3:00 is acceptable to call them if they don't call me by then.

I also realized... man I mainly post on my bad days. I really am so happy most of the time. I feel so incredibly blessed to have a a husband who I love so much, a beautiful baby, wonderful family and friends... We really do have it all! I am so thankful for all of my blessings. Also to those wonderful friends and family I want to apologize b/c I have been AWFUL at returning phone calls (even more than normal) or texts, emails... I am so sorry. I love you all very much and do appreciate all your love and support!


Some happy news to share. Hudson has a tooth! My baby is growing into such a beautiful little boy. "He has personality growing out of his ears" as Morgan said last night. After a total melt down yesterday, it was so wonderful to spend time with Morgan and Belly Boo, as I call Isabel. It is so wonderful watching those two together. Seeing how similar and how different they are. I still can't believe they worn born a day apart! I love you girls!


Well we will be packing and getting ready to meet Dr. Fearon! At least we will be arriving in style with his "I'm tougher than I look" shirt. Thanks again Ash! We LOVE it. I wish I had one to wear that said "I'm not!"


Tonight I am going to have that glass half full with wine to celebrate hopefully having a date and end in sight ;)


Cheers!

Surgerys Moved UP!

"It's a strange thing, but when you are dreading something, and would give anything to slow down time, it has a disobliging habit of speeding up.
~J.K. Rowling, "The Hungarian Horntail," Harry Potter and the Goblet of Fire, 2000

We originally were looking at doing our surgery in Feb. b/c the doctor likes to do surgery when the baby is 11 months. BUT in Jan. insurance with my company is changing. It will be significantly cheaper for us to do the surgery with our current health care provider.

SO ...
I talked with Dr. Fearons nurse and told her our situation. I said my #1 concern of course is getting the best results and is way more important to us than financial issues. We will figure it out. I said it moving the date up will at all increase the chance of another surgery that we will keep our Feb. date.

She said the best operation results window is between 9-11 months. After 1 year success isn't as effective. She said the head is changing so quickly during the first year that it is good to wait as long as possible but before 1 year. (Another great reason to raise awareness!) She said doing the surgery at 9 months will be fine. I expressed my concern again about if this will increase the chance of another surgery that we will wait. She said there is no way to predict what his skull will do at 9 months, 11 months or through his life. She said that's why Dr. Fearon over corrects during surgery b/c with this condition his skull will want to reform. But that he tries to hit a home run during surgery so we only have to do this once but there is no guarantee. Dr. Fearons rates of needing another surgery is 2%, other doctors percentages are MUCH higher.

So I talked to the surgery coordinator and told our situation. She said there are 11 other children who also need Dec. But that she would mark it in her book. She said we can't have a date until the neurosurgeons schedule is released. Amazingly enough it might be released tomorrow!!! Finally some good news.

WOW! So many feelings are flying around right now. I am happy to have this over with sooner than later. BUT holy crap this is becoming REAL SO FAST!!! I felt like time was already going too fast and now we have hit fast forward. Every step along the way I literally feel like I am dragging my heels in the ground getting pulled to the finish line.

It is so great that this will be behind us sooner but its so hard to imagine that when all I can see is surgery. I realize moving it up only changes the fact that I have to deal with this sooner rather than later. But I like my happy, cozy denial. Its safe unlike the harsh reality. Lets just pretend this isn't real is much easier to deal with on a daily basis. And now BAM, my blanket of denial is quickly removed.

Sometimes music says it best. Drumming, by Florence & the Machines is exactly how this has felt. Its been my "soundtrack" through this. Every time I listen to it, it reminds me of that first doctors appointment and how it feels on those bad days.

I will happy to have a new soundtrack soon. I'm thinking Here Comes the Sun will fit perfectly!

Pay It Forward

I'm so excited to be able to do my part to raise awareness of Craniosynostosis. Ever since I found out about Hudsons diagnosis I kept dwelling in the WHY? Why me? Why my baby? And honestly sometimes I still get stuck in that place in my mind.

I have seen many amazing women through craniokids.org use their talents to help out with cranio awareness and to ease the fear and anxiety of the newly diagnosed. Like the cranioangel network... a mom who needed to fill her time with something other than worry. So she sends out headbands and cranio caps to help brighten a cranio families day. I still remember how excited I was to get ours in the mail. Or the craniocarebears, sending care packages to families going through surgery. Or the mom who wrote the beautiful poem that I have as a post on this blog. Or even just the women on craniokids.org who are an ear to listen to you. Your fears, sadness, and sending prayers through surgery. These women stay logged on long past their kids surgeries just to pay it forward. I find them so amazing! True heros.

Finally I have found a way that I can give back. I have been trying to use my creativity to hopefully make an impact on cranio awarness. Its just a logo and a brand but it gives cranio a whole new look and feel. It was a challenge to make sure it wasn't too harsh but not to cutesy either. I feel I found a good balance of honesty and sweetness. I hope to someday make shirts and onesies that other cranio parents can wear with pride.

This brand I have developed is for our benefit to raise awareness, help with our medical expenses and to help other families through the Craniofacial World Foundation. Some of which don't have any insurance. We are still in the midst of the crazy insurance world but at least we have someone to battle with.

All of this has kept my mind off the fact that we go to Dallas on Sunday. GOD on Sunday. Thinking about it puts a burn in my eye as I hold back the tears. No matter what I do, the day is coming sooner than I will be ready for, that we will be putting our baby in the hands of another. In the doctors hands holds my whole life, my baby. I am getting ready to shake those hands in a matter of days. Hopefully I can stay steady and get some answers. I want to see how he interacts with Hudson and I pray Hudson charms his socks off! My cousin Ashely got Hudson a shirt that says, I'm Stronger Than I Look, which I adore! Hudson is going to wear that to meet the dr. and help us make an impression. Thanks Ash!!!

As you can tell this benefit is more than just helping us financially, awareness, or helping the WCF... Its a way to give back and pay forward all the kindness that has been shown to me. Its giving me peace of mind. Its letting me pretend my biggest fear is no one attending the benefit. Its just heaven sent.

Check out chicksdigscars.org for the benefit. We appreciate any help in promoting this event.

Wish us luck in meeting the doctor!

Thanks,
Jen

Dallas T Minus 10 Days!

The benefit has been such a beautiful way to make this something positive to focus my energy on. I am so grateful that it has allowed me the opportunity to dive my creative juices into something I am so passionate about. I have been very busy creating materials and can't wait to share it with you! My goal is to have everything live by Friday evening. GO GO GO GO!

Just last night Matt and I were talking about the trip to Dallas to meet Dr. Fearon. Suddenly like a brick to the head I realized that is next Sunday! WHAT! How did that happen? Normally I would have a notebook full of lists right now. That's how I cope with stress. Lists, lists, lists, and lists of my lists. Yes, if you haven't realized it by now I can be neurotic. Hey, we all have our crazy somewhere hidden deep down. You do a blog and you will learn that about yourself too. LOL.

I am so grateful right now that I have kept so busy... too busy to realize the days slipping away until going to Dallas, and later leading up to surgery. I am happy I have been living in the moment with the baby since these days really do slip away way too fast. Everyday I can see him grow up a little more and more. They should call it the speed of life instead of the speed of light. I just want a pause button sometimes to hold on to the moment. Thank God for the video camera ;)

I'm not sure what to expect on how I will feel once we reach Dallas. I am sure it will be a mix of emotions. Thinking about it puts a pit in my throat. But I just pray that meeting the doctor will give us some peace with our near future. The scariest thing is always the unknown right? Or is it that ignorance is bliss? I think its a little of both and so this will be too.

Wish us luck and stay tuned for all the Chicks Dig Scars materials coming soon to a computer near you!

- Jen

Sincere Thanks for Support and Generosity

Hello all,

I just wanted to give a sincere thank you for everyone's support.  Recently at Black & Veatch, wristbands have been available to purchase for Hudson and Craniosynstosis awareness.  The response to the wristbands has been incredible.  It is truly amazing to know that we have a great support system.  I can't express to you how much this means to Jeanette and I.  It feels so great knowing that we are not going through this alone and that we have so many people willing to support us and Hudson. 



Just as much as Hudson's smile brightens up our day; so do the smiles, kind words, prayers, and encouragement we receive from all of you everyday.

Once again, I would like to thank you from the bottom of my heart.

Matt Raven

From the Mouth of Babes

This is an interview from 5 yr. old Oliver, a boy who went through cranio surgery. I just had to share, it is so stinking cute to hear from his perspective!


http://www.cranioangelnetwork.com/Cranio_Angel_Network/meet_the_angels/Entries/2011/9/16_Angel_63__Oliver.html

Chicks Dig Scars, Benefit for Hudson

What: Chicks Dig Scars, Benefit for Hudson

Where:
Club 1000 (the Penthouse)
1000 Broadway St.
KC MO 64105

When: Friday, November 11th 7:00 pm


My cousin Morgan is putting together a benefit for Hudson! The proceeds will go towards surgery and travel expenses, and a portion will also be donated The World Craniofacial Foundation (WCF). An outstanding organization that supports four distinct programs to help children and adults with craniofacial abnormalities.

The benefit is open to the public and will cost $30 a person at the door. This will include food and an open bar. We will also be holding a silent auction and raffle. This is for a great cause but will also promise to be a fun event. What a great reason to get gussied up and head down town.

Please let us know if you can attend, would like to make a donation, or have something you can provide for the silent auction. You can contact us directly  through the blog or at hudsonraven6@gmail.com

We have been so overwhelmed by the generosity of loved ones and strangers! Thank you so much! A BIG Thank You to Lindsey with Herlife Magazine who has been a huge help!

Some exciting businesses participating so far are:
Club 1000 http://www.club1000kc.com/
Stella & Dot http://www.stelladot.com/sites/aclifton
Pin Up Pastries http://www.kcpinuppastries.com/
Blanc Burger http://www.blancburgers.com/leawood.html

This is going to be such a fun event and I'm so excited for so many reasons!

1. Awareness is SO huge!

Ensure more children are seen by physicians when there is a concern with head shape or development
Ease the anxiety that comes from hearing the diagnosis for the first time
We want to encourage more much needed research that could come from more awareness
We can help society understand and love our beautiful little cranio kids.


2. It is a relief to be able to offset some of the medical and travel expenses

3. It will be so wonderful to be surrounded by friends, family and anyone who wants to come join us before surgery.

4. It feels so great to help other families through the WCF, some of which don't have insurance.

I look forward to seeing everyone there! This is going to be a wonderful event and means so much to our family.

Love,
Jeanette, Matt and Hudson

Genetics

I have been thinking a lot lately about how Cranio will effect our future.

Why does this happen? What are the chances of recurrence?

Craniosynostosis is most often sporadic. In some families, craniosynostosis is inherited in one of two ways:

• Autosomal Recessive
  Autosomal recessive means that two copies of the gene are necessary to express the condition, one inherited from each parent, who are carriers. Carrier parents have a one in four, or 25 percent, chance with each pregnancy, to have a child with craniosynostosis. Males and females are equally affected.
• Autosomal Dominant
  Autosomal dominant means that one gene is necessary to express the condition, and the gene is passed from parent to child with a 50/50 risk for each pregnancy. Males and females are equally affected.

So what does this mean for us?

Hudsons kids (I know way far away right now to think about) have a 50% chance of having cranio.
I have read we anywhere from a 2-50% chance of having another cranio baby depending on genetics.

We can do genetic testing to see if this was just a chance occurrence. Honestly I don't know how I feel about doing testing. If I knew that we have a 50% chance of recurrence would I rethink expanding our family based on a percentage point? What percentage does anyone have that their baby is going to come out perfectly "normal"?

I know now more than ever there is never a guarantee that when you have a baby it will be 100% healthy. In fact now I am starting to be amazed at how many kids end up completely "normal" with all the things that can go wrong. Its a good thing I am not in the medical field or I would be a nervous wreck knowing all the possibilities. The fact is, I know is how lucky we are that this is so treatable and we caught it so early.

You can't live your life in fear of the what ifs. Life is not supposed to be perfect and neither are we. I just hope to raise awareness as much as possible. I hope awareness will encourage more research for Hudson, our family down the road, and every other beautiful cranio baby.

Keep Your Head Up

So my last post was a bit debbie downer, not like me but hey I am human! That is also what I have been wanting to tell the people who have been surprised when I am not always usual self. I am just human. I think since we have known about this for awhile people think that you have had plenty of time to adjust and just move on. As much as I wished it worked that way it doesn't. Especially since we can't move on yet and we are in limbo until surgery. I think part of the stress is also jut part of being a mom and add a working mom on top of that.

So now I am just keepin my head up and dealing with each day and all the stresses that come with it. You really just have to laugh sometimes when you look around and see that everything is a mess. Laughing does keep you from crying anyway and its much more fun.

I know I have said this before but it always amazes me how I can have the worst day and it vanishes as soon as I hold my lil boy. He really is such a strong life force. You can't help but smile when you are with him. He is so amazing and easily the best thing I have ever done.

Overwhelmed

Overwhelmed is the word of the week. Since I was so consumed with everything going on with Hudson, now everything else is falling apart around me and I can't seem to catch up. Just because you have a lot going on doesn't mean the rest of the world stops.

Juggling being a mom, work, house responsibilities, along with the every day stresses has just got me running like a hamster on a wheel. But it seems the faster I try to run the more I seem to miss. By the end of the day I am totally exhausted. I just can't be everything to everyone and I hate disappointing anyone. Unfortunately I know I have.

I am going to try to focus on one thing at a time and just hope for some forgiveness and understanding. I will have to work this weekend to catch up. One thing at a time, one thing at a time.

Happy Ending

Recently I had a fortune cookie that said something to the effect of taking time for yourself will allow you to be more productive. Not that I put much weight into fortune cookies, but its interesting when things work out like that...

It really is amazing how when you take some time for yourself how different your outlook is. So my new strategy is working! The week started out pretty awful and is ending great!

Simple things like working out, reading for fun and not research, and NOT focusing on cranio but focusing on Hudson has made all the difference. A cherry on top was having a happy hour with my amazing co-workers. Thanks ladies!!! Thanks to my amazing husband who is always tell me, slow down babe, slow down. You don't even know how much I need that. Now I am curling up to one of my favorite movies Practical Magic to top it all off.

I am well on my way to worrying the "normal" amount that a mother should about her 5 month old baby; not worrying about my 5 month old baby with cranio.

What a great ending to the week! Happy Thursday everyone!

Love,
Jen

Just Breathe

So last week I thought I had a pretty good handle on all this. I had come up with some new things to distract me and it seemed to be working really well! I have been BUSY:

• Working on a Chicks Dig Scars Logo.
• A "We're On The Other Side" shirt for later.
• Researching Cranio
• Doing this blog
• Planning for Dallas in October
• Thinking of all the ways I can make the surgery easier for him.
  - Whether its patting his leg when I put him to sleep instead of stroking his hair, or using toys that have sounds more so when his eyes are swollen shut he can still find comfort in his toys...

But this week my anxiety got out of control. I got so overwhelmed I had to remind myself to breathe. Just breathe. I realized my strategy of distraction wasn't distraction at all but obsession. Every second of every day revolved around cranio. I guess subconsciously I thought by doing all this I was gaining control over something I have no control of.

I don't want to wait 6 months for surgery and I don't want the surgery to be tomorrow either. I want to exist in a place where there is no time. At least no time where he has to go through this surgery. I just don't want to do it at all! It makes me want to scream!

So ... new strategy. I'm going to have at least 3 days that I do nothing related to cranio. I have started reading a book before going to sleep instead of being internet researching cranio. I'm going to start working out to get rid of some of this nervous energy. And focus on loving my baby and family. Doing fun things together and building awesome memories.

I realize the bad days are still going to come and there really is nothing I can do about it. I have to go through this process whether I like it or not. I'm trying to focus on the things I do have control over.

Cranio Angels

"The Divine Kiss"
by Cindy Scofield

One day God was taking roll of all the precious souls who were eagerly awaiting their assignments on earth. The angels were helping these innocents to organize themselves and to prepare for the lifelong task at hand. Each of these precious children had to be perfectly placed so that they could achieve their true life tasks. A small group anxiously discussed where they thought they would end up. One by one, they received their purposes and were sent down to where they were needed. One was sent to a rich family and needed to use his resources to someday help a person in need. Another was sent to a poor family and needed to use his wellspring of happiness to cheer those around him. A little girl was sent to give her parents hope in all the heartache they had endured. Finally, a little boy was all that was left. Fearing that he did not have a place, he started to cry. God asked, “What was wrong my precious one? Since we are in heaven, your burden must be pretty great for you to shed tears.” The little boy explained, “You have given so many children a chance to make a difference in the lives of some special humans. Since I am still here, I fear that I will not have the opportunity to know what it is to be human.” God said, “My child, do not worry. You will have one of the biggest tasks of all. I wanted to send you last so that I could spend some time helping you to understand your true purpose. Your life as a human being will not have an easy start. Your little form will not be perfect, and you will face many uphill battles in your life because of your special conditions. I just want to send you with the knowledge that I have specially chosen you because of your strength of character and your stubbornness of will. I am confident that you will face these challenges head-on, and I know that you will only serve to uplift Me and those around you. You are a chosen one, and I will be right beside you the whole way.” The little boy felt better, but then he began to feel that the burden was too great for his small shoulders. God noticed the concern on that darling face and said, “My child, do not worry over your physical burdens. I am sending you to parents who will seek to make your life comfortable and happy. They are strong people who doubt themselves but will quickly take comfort in your courage. As a family, you will all learn from each other; and in turn, you will touch the lives of everyone else you contact. Please do not worry; you and yours will find plenty of strength in Me. I send you down with My kiss. Let the mark on your head be a constant reminder of this conversation and the love that surrounds you. I will be with you always.” The child arrived pristine to the open arms of his intended parents. In a very short time, God’s promises came true; and a few months later, God kissed that remarkable boy’s head. Since that fateful kiss, this brave little man has given courage, strength, and hope to all those who know his story; and he has only just begun. The angels in heaven rejoice.

Habakkuk 3:19 “The Lord God is my strength, and he will make my feet like hinds feet, and he will make me to walk upon mine high places.”

http://www.thescofieldfamily.com/DivineKiss.html

Cranio Cap

We got our pirate hat from the Cranio Angel Network (a charitable awareness program providing handmade flower headbands for girls and pirate hats for boys with Craniosynostosis.)
http://www.cranioangelnetwork.com/Cranio_Angel_Network/Welcome.html
I have a video about the amazing mom who does runs this program under the Awareness Tab.

It really brightened my day opening it and I couldn't wait to get it on his adorable little noggin. He is SO cute in it. MWAH baby boy.

It will be really nice after the surgery to put this on him on days that you just want to go to the grocery store without people starring at your babies head. I'm all for awareness but I can imagine that some days you just don't want the looks. I did see a funny shirt for Cranio gear that said "Keep Starring, We Haven't Been Through Enough Yet". Cracked me up but I know people will just look because they are curious. The scar is going to be pretty noticeable before his hair fills in. Another great reason to raise awareness and understanding :)

Great Day!
Jen

4 weeks ago

It is exactly 4 weeks ago today that we found out what Craniosynostosis meant and that big word was going to have an enormous impact on our lives.

I will never forget my stomach hitting the floor as the doctor told us surgery was required and described cutting my babies head from ear to ear to reshape his skull. As if this wasn't horrific enough, but that he couldn't even do the surgery and recommended we find Dr. Fearon. That day will forever be imprinted in my mind. Feeling like you can't breathe, can't speak, can't move. I can remember exactly how I felt yet no words can possibly describe it.

I tell you this for all those parents out there who have just been through this. It WILL get better. Only 4 weeks and I feel like the Cranio expert. Although its still surreal at times we have been able to enjoy our baby again. These moments with them are so precious and they grow up so fast it would be a shame not to enjoy every second. A friend of mine, Keri, reminded me, he is still your baby. He is the same boy he was the day before... no different.

Those first couple days I couldn't even do our night time routine that I used to cherish. I had to leave the room constantly crying and leaned on Matt to take over. Being scared consumed me. Hudson would just give me a smile with an its okay mommy look.

I promised myself that would be the last time he would have to give me that look. That I must keep face in front of him. My mom was at my house when I told her about surgery and I could see her eyes start to well up. I said if you are to cry please go in the other room, not in front of Hudson. If I know I am going to cry I put him down and walk away for a moment until I can get it together. She teared up and whispered, "You are a mom".

The best thing I can recommend is research and do more research. Knowledge is power. The more you know the better you can prepare yourself. The craniokids.org has been such a HUGE comfort. You can talk to moms who have been through this or who are in the exact same shoes as you right now. Those ladies are amazing. Many stay on the board years after their kids have had surgery just to support others.

I still wish on a daily basis that I could take his place for the surgery. That I could somehow protect him from all of this. Talking to people who feel the same way you do, no matter how unrealistic or crazy makes the biggest difference. Knowing that people make it on the other side of this all the time and you will too. Maybe a little bumped and bruised even as parents but I don't think you can walk away from this as if it never happened. Then again I don't think you should. You have to learn from every experience whether good or bad.  I have to believe there is a reason for everything. Don't know what the reason is right now... but I do know I don't take a second for granted with him.


Love Jen

Cranio Angel Network

I have a new video under the Awareness tab that you should check out. I am so incredibly inspired by story. To turn this into a positive and help other families is so awesome.
I can relate to needing  a way to keep her mind focused on something happy.

I plan on doing my part as well to raise awareness and helping other families as well.

Hudson's hat should be at our house any day. Can't wait! After his surgery he is going to be an angel too. I also put the link to her Cranio Angel Network below.

http://www.cranioangelnetwork.com/Cranio_Angel_Network/Welcome.html

Meeting the Doc

We have our consultation date set to go to Dallas and meet Dr. Fearon for Oct. 10th!

Really excited to meet him in person, yet a little nervous b/c this is all becoming very real. We will get to see the facility and get a full scope of what is going to happen. I feel like each step along the way is filled with so many mixed emotions.

This whole thing is still just so surreal. I keep thinking I am going to wake up and this is all just a bad dream.

I really just wish time would stand still for awhile. But at the same time want this all behind us as soon as possible. Don't know if that makes any sense.

Wish this pit in my stomach would ease up. I'm feeling excited, nervous, scared, apprehensive and anxious! I need to somehow take control of my thoughts. Yoga maybe, lol. I will give anything a try.

My Sunshine

"Children have neither past nor future; they enjoy the present, which very few of us do."
~Jean de la Bruyere 

So after feeling pretty low yesterday, I went and picked Hudson up from daycare and just one gummy faced grin from that little boy turned everything around.

It amazes me how I am trying to be strong for him yet he is the one who gives me strength. With one giggle, he makes me realize everything is going to be okay. Within that moment I don't think about anything else but how lucky I am to have him in my life and be his mom.

Last night I sang You Are My Sunshine, which somehow felt more true than ever. I read him just one more book, sang him just one more song and held him a little tighter. This experience makes me cherish every moment and taking nothing for granted. Yep he is going to be one spoiled little boy! LOL!

Its funny how shortly after I found out about his diagnoses I was doing laundry and found my gym clothes. Just a few days earlier my main concerns were getting baby weight off and why this boy doesn't like to sleep! Within a moment everything changed. I am grateful to have a new perspective on whats really important again.


He really is my sunshine

Love,
Jen

I am also using this blog also for families who are going to be later reading this and going through the same thing. This blog is intended to be informative but also as an outlet for us to cope. We have good and bad days and the way I feel about this changes daily if not hourly or more. Sometimes I may be venting, and rambling. But it feels better to release these emotions. Some days may not be fun to read because that is our reality right now.

I feel my head and heart are in a constant battle. I have to stay positive and strong but also face the reality that this is not going to be easy. I have to be as prepared as possible to that I can be strong for him.

The reality is its going to be almost too much to bear seeing him post-op. His eyes may be swollen shut for days. His head is going to swell to the point he won't be recognizable. He will have a zig zag incision from ear to ear. He is going to be poked and prodded for months leading up to this as well as while he is in the hospital. Many children flinch to the touch after the surgery for a long time not knowing if its going to be a gentle touch or a needle. They have issues sleeping after from post traumatic stress for at least 6 weeks.

My head tells me:

• How lucky we are that it is something that can be fixed
• This procedure has been done many times before with success
• We have the best doctor we could hope for
• How lucky we are that his development is great!
• Kids recovery so quickly and this will be way harder on us than him
• Soon this will all just be a nightmare and he will go on to lead a normal, happy life

All this doesn't change the fact that I also have to deal with my heart

• My heart breaks that my baby has to go through this at all!
• That he is going to be in pain, scared and not understand
• Why someone so innocent has to go through something so hard
• My baby is learning so much fear and pain at such a young age
• Will this surgery shape who Hudson will become being exposed to something so traumatic so young?
• That this isn't fair. WHY my baby!
• Along with many more thoughts that I don't even want to write

I realize all l I can do it be as prepared as possible and focus on the things we do have control over:
Keeping him as comfortable and calm as possible by bringing him his favorite music, toys, holding his hand, singing to him, reassuring him and just being there. Waiting 6 months is going to be so hard to have all of this on our shoulders. I can't wait until we are "on the other side" as all my friends on the craniokids.org site say.

Oh Yuck! Well I feel better now. Thanks for letting me get that off my chest.

-Jen

Welcome

Thank you for checking out Hudsons blog. I hope you enjoy following along in our journey. We will be posting updates as we go through this crazy process.

We are doing this blog for several reasons:

To keep our family and friends updated

Raise awareness of this rare condition

And of course for Hudson. Right now we are the narrators but this is his story. Someday he will want to share it himself because afterall, Chicks Dig Scars!

Start with Our Story to get the background story.