Tuesday, March 6, 2012

Bright Future

We are back from Dallas. Our appointment went GREAT! We met with the anthropologist and he said his measurements show a huge difference. We went to meet with Dr. Fearon and also met with a couple doctors one from Dublin and one from Brazil who are studying with him to learn from him. He asked about any concerns we had and I told him about the ridge I felt which is in the same place as the previous. He felt around and said ... "Oh I feel that too". Sigh of relief that I'm not crazy and yet oh oh what does that mean? He said its fine and just a suture. He had moved his skull around and this is just the lambdoid suture I am feeling. He said his head is going to be changing a lot over the next couple years and we should expect to feel lumps and bumps. He said it should fade and everything is fine.

He also said they ran genetic testing and it came back clear. Craniosynostosis was not a result of genetics. Great news so if we decide to expand our family we would run a low risk of our next child having cranio and Hudsons children (seems weird) should not have cranio. Hopefully this is all behind us!

He repeated several times that I have a perfectly NORMAL boy. He is cleared to play all sports, he can sky dive, ride a bike ... he is a normal boy. We brought some extra Chicks Dig Scars shirts for Dr. Fearon, Dr. Swift (our neurosurgeon), Cindy (his nurse) and asked him to get one to our PICU nurse who was just amazing. Cindy said she kept the Hudson Raven - Strength - Courage - Love bracelets we gave her which made me smile. Then we gave them all hugs and said see ya in a year! Dr. Fearon will be seeing him every year for the next 18 years. Good thing we love Dallas!

Now we are on to planning fun things like a photoshoot for Hudson (a non medical photoshoot!) And planning his first birthday! Ahhh that makes my eyes well up just thinking of how much we have to look forward to. And just being able to live in the moment. Right now we don't foresee any more surgeries. For now I am going to allow myself to breathe and try to let the fear of being too happy go. This all feels too good to be true, to happy and I don't want it to be taken away. But fear does just that. Its time to just be for awhile. Be happy, watch Hudson grow, watch him take his first steps, laugh at all his funny new words. For the first time in a LONG time I feel a sense of relief and just plain happy :)

"Let go of the past and go for the future. Go confidently in the direction of your dreams.
Live the life you imagined."

Thursday, March 1, 2012

Back to Dallas

It has been a loooonnnnggg time (so it seems) since my last post. For the first time in a long time we have just been enjoying our baby and life. I didn't even want to hear the word craniosynostosis. I just wanted to block it all out and MOVE ON.

Its been so long I couldn't even remember my password to get into the blog! So long since I thought about cranio it took me awhile to remember the craniokids.org site but it all came rushing back to me tonight as I was putting him to bed and felt the return of the ridge on his forehead. Time stopped for a brief second as I tried to find my breathe and tell myself my imagination is getting away with me. As I brushed my hand across his forehead again my heart sunk in my chest and all those feelings came pouring back to me. All those feelings I thought I had overcome and I could lock away to never feel again. It made me angry at cranio for doing this to him, to us! Haven't we been through enough? What test did we not pass? How much more can we handle?!

We always knew that someday his skull would want to reform the way it wanted to but to what degree was unknown. I didn't know when it would come back but wasn't thinking this soon! Logically I knew this would never be behind us completely. Dr. Fearon had told us his goal was to overcorrect enough to overcompensate for what his skull wants to do. But I am not always a logical person and tend to lean towards fantasy land and wanted to pretend we could just move on, put this behind us and be thankful for the life lesson. I haven't even had time to mail out all my thank you cards yet and we are already back here!

We already had an appointment set with Dr. Fearon for a follow up visit months ago. We will see him on Monday and Hudson will have his head measured again and the famous post op pics. I was already a bit torn on how to feel about the follow up visit. Surgery certainly didn't go as we thought it would. I can't even think right now about doing that ever again. I hope that when we see Dr. Fearon we can talk about what happened that day... as well as what to expect for the future. Although I am pretty sure for the future he is going to say its a wait and see game.

 On a positive note... Hudson is amazing!!! SO amazing. He is trying to walk, talk, climb and win over any pretty lady near him. He is such a sweet sweet cuddly little boy who forgives in a second and loves to laugh, play, give kisses, sing, dance and EAT... The spirit of a child is inspiring. He is going to be one on March 18th and we are trying to plan his first b-day. Many good things in his future. One of the nearest is his first taste at CAKE!!!

Wednesday, December 21, 2011

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.


Tuesday, December 20, 2011

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.

Thursday, December 15, 2011

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.

Tuesday, December 13, 2011

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.

Monday, December 12, 2011

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.