8 weeks/10 months

Wow - today is 8 weeks since Owen's surgery! I can't believe just 8 weeks ago we were sitting by his side in the PICU. Today he is now 10 months old (as of yesterday!) and is doing amazing.

I am so thankful for every day I have with my children. We often take life for granted and we often think life is going to be sunshine and happiness, but sometimes it never quite works out the way we expect.

Last week Owen had a check-up with the plastic surgeon. He is very happy with Owen's progress. There is still a slight concern with his left head tilt but we've increased the neck stretches at home. His therapist feels happy enough with his progress and said the next time he goes may be the last time! I couldn't believe it when she said it. Wednesdays for the last 6 months have consisted of me coming home from work, picking up little man and going to therapy. It's become a part of the routine. I'll be glad when the time comes for him to "graduate" from therapy, but I'll be a little sad too. His therapist was a HUGE part of us pushing the issue with his skull further that ultimately lead to his diagnosis of craniosynostosis. The next check-up with the neurosurgeon is September 7th and the plastic surgeon's next check-up will be October 27th.

I'm starting to get into party planning mode. Addison's 5th birthday is next month on the 25th and Owen's first comes the month after on the 21st. What was I thinking having their birthdays so close? I'll barely have recovered from Addison's party and then it will be time for Owen's.

Owen is cruising around the furniture more and more and now has started clapping. He's quite the ham and has the most handsome smile. He can melt my heart with one toothy smile and he knows it too. :)

I have several new friends I've met through the cranio community whose children have had surgery in the recent weeks. It breaks my heart every time a sweet baby has to go into surgery but when the moment comes that I hear they made it out of surgery okay, my heart swells with happiness. Our babies have been given a chance at a normal life and to have the medical technology now to do something about this - it's just amazing.

Absolutely amazing.

5 weeks

Owen is now 5 weeks post-op! It seems like time is flying by. I can't wait until we can look back and say "Wow, it's been 1 year.." etc... May 27th is a day that will forever be etched in my memory. Everyone has days in their life that they can't forget. That will most certainly be one of them.

Little man turned 9 months on the 21st of June. He had his check-up on Monday the 27th. He is a happy and healthy 22 lbs 7 oz and 28 inches long. His pediatrician is very happy with his development and where he is at with his milestones. We're so blessed that even with all of the obstacles he's faced - he's met all of his milestones.

He has a check-up with the plastic surgeon on July 14th. Just to check where his incision is at with the healing process. He's still going to physical therapy once a week. His therapist mentioned that we might be switching to bi-weekly appointments pretty soon. She's very happy with his progress. He still does the left head tilt but it definitely seems to be more of a habit thing than an actual issue. She said she'll see him for a few more weeks on a weekly basis and then we might be switching to the bi-weekly appointments.

We are so happy with the wonderful team of Doctor's that Owen has surrounding him. His new pediatrician is amazing, his plastic and neurosurgeon's are just incredible and his physical therapy... I just adore her. There aren't enough words to say how blessed we feel to have so many people who care about our son and his well being.

 This was 4 weeks post-op at the water park :)

My princes

 My family <3

 5 weeks post-op

 Love his gorgeous blues

Owen Hunter 9 months old

9 months

How is it even possible that this baby:

Became this baby:

He's been through so much in his 9 short months and he's done it all with a smile. Seriously. I am SO proud to be his Mother and to get the honor of watching him grow.

He's 9 months old and he babbles "Dada" and "Mama" (but only says Mama when he cries - stinker) and he is crawling more now than just doing the Army crawl. So far, the kid hasn't met a food he doesn't like. He ate cranberry sauce the other night and LOVED it. He was screaming for more. :) He pulls himself to stand (and I've even caught him standing unassisted for a second or two) and he reaches out for us when we reach for him, but what he does after is funny, he'll grab our arm and tuck it under him like he's saying "You're picking me up. You have no choice."

At the last appointment with the neurosurgeon on the 13th, he was 22.4 lbs, but he has his 9 month well baby visit on the 27th so we'll know how much he weighs for his 9 month age soon.

I couldn't have imagined when he was born everything he'd have to endure at such a young age. I couldn't have imagined in my wildest dreams that my son would be diagnosed with craniosynostosis and require a major skull surgery. I say it all the time and I'll continue to say it until I am blue in the face, I am so blessed. We've had a rough road the last two years and there have been some dark days, but at the end of the day, we're all together and we're alive and happy. That's all that matters.

Friday is 4 weeks post-op and the 27th will be the official 1 month mark. It seems like time stood still the second they took him back to the OR and my heart skipped a beat, and now look, we're past the worst part... and finally on the other side.

http://youtu.be/zaqAQacXhp4

The link is to a video the Children's hospital where Owen had his surgery did about his neurosurgeon. I can't say enough how awesome Dr. Hudgins is. I just can't put it all into words.

More Post-Op visits

Owen had his follow-up visit with his plastic surgeon today.

I can't say enough positive things about his surgeon. My Husband and I praise him every chance we get to everyone we can. He is a truly amazing person.

He saw Owen and said he looks incredible and he is healing very nicely. Things are exactly how they should be for him being 2 1/2 weeks post-op. Friday will make 3 weeks since Owen's surgery.

It feels so good to be on the other side of this condition. Now we can focus on Owen's recovery and what comes next. His surgeon recommended we look into a TOT Collar to help Owen with his left head tilt. He's done that ever since he started to get good head control and he's been in therapy for it since January. We've noticed some improvement over the months and it seemed in the first few days after surgery that it was gone, but it's back. His therapist has commented before that she thinks it may be more out of habit now than an issue. The TOT Collar will basically "train" him on holding his head up straight and not wanting to automatically tilt it to the left. He has his first therapy appointment since surgery on Wednesday so we plan to ask his therapist about it then.

Owen hasn't let this surgery slow him down for a second. He's now babbling "Dada" all the time now. He'll only say "Mama" when he cries. I even caught him standing completely unassisted yesterday. It was only for a split second but he did it. He won't crawl with his hands and knees but he loves his army crawl. That kid can move! I'm so proud of him. I think any sick person in this world should have to spend a day with a child battling an illness, disease or who just had a major surgery. It would definitely help to put things into perspective. They bounce back so fast and they don't waste any time moping or whining about their pain. Owen is a true testament to that. He's incredible!

His next follow-up visit with the plastic surgeon is scheduled for July 14th. He wants to see Owen again to check on his incision and watch how it heals. He has an excellent team of Doctor's and I am confident he is receiving the most amazing care out there. No matter how many trials and tribulations our family has to go through, we will make it through this. We have each other. <3

Post-Op

Owen was supposed to see the plastic surgeon and neurosurgeon both on Wednesday but early that morning the plastic surgeon's office called and rescheduled his appointment for Monday morning. I guess Dr. Murthy is in surgery all day and he was running behind and wouldn't be back in time to see Owen for his appointment.

We did get to see the Neurosurgeon and he said Owen looks fantastic. He is very happy with his progress and said he looks amazing for having just had surgery 2 weeks ago.

Owen doesn't have to go back to see the Neurosurgeon until September 7th - 2 weeks before his 1st birthday. When they scheduled the date I had a "holy crap - he'll be almost 1 by then" moment.

I can't believe it.

I'm so thankful - SO thankful - that Owen made it through his surgery with no complications and I'm so thankful he's doing so well. He'll go back to physical therapy again next Wednesday. His left head tilt seemed to improve for a few days but he's back to doing it again. Not as often as he was, but it's still there. Even the neurosurgeon commented on it at his visit. He said to keep up with the therapy because we don't want him to get in a habit of keeping his head that way and undoing all of the work he just had done.

Akron Children's has been incredible to our family and beyond incredible to our son. I'm so thankful for them.

My little Mister - 2 weeks after surgery. He's like a brand new boy! I still look at him sometimes and I think how different he looks. I'm still getting used to the changes. I loved my son just the way he was before the surgery. I knew in my heart something wasn't right and it was obvious by looking at him that things weren't right... but I didn't care. He's my baby and I loved him regardless of those "imperfections."

Even with everything he's been through, I am so thankful his happy personality never changed. He was always smiling, always laughing. Even when his eyes were so swollen that you couldn't see his eye lashes, he was laughing.

He still loves to play with sissy and try to eat her hair... and his sissy is a huge sport and lets him. =) She's the best big sister EVER. When Owen's eyes were swollen shut, she knew he couldn't see her, so she made funny noises to get him to laugh and smile.

Everyone says they have the best kids, and while that may be true, I have to say I have the best kids. =)

I don't know what the future holds for our family or what may happen with Owen's condition, but I know right here, right now that God performed a miracle when he gave us that little boy and I'll spend the rest of my life being thankful he brought him back to us after his surgery. <3

1 week later

This time one week ago, we were sitting by our son's side in the PICU. He had just gone through a 4 hour surgery to correct his craniosynostosis. His face was so swollen and bruised and we had no idea it was only going to get worse before it even got better. By the time we came home Sunday, his face looked like this:

Seeing his sweet little face like that absolutely tore my heart in two.

Now, just 5 days later, my sweet boy looks so much better.

He is my brave warrior. Everything he went through and everything he endured and he's done it all with a smile on his face. Even when he couldn't see, he'd hear my husband and I talk to him or he'd hear his sister making funny noises and he'd just smile.

Everyone told me before the surgery that I'd be amazed at how fast he'd bounce back and how resilient kids are. For anyone who finds this blog whose child is facing craniosynostosis surgery: It's true. Owen is just 1 week post-op and aside from some minor swelling and bruising, he's back to his old self. His scar is getting better day by day. I've noticed some scabbing so that means it's healing and about to fall off. I'll be so happy when that day comes!

Visit some great links for support:


The Jorge Posada Foundation

Cranio Care Bears

Avery's Angel Network

CCAKids.org


All of these sites have so many helpful links, information and ways to reach out for support. They were a true blessing to my family during one of the hardest times.

My son has craniosynostosis...and he kicked its butt!

"While we try to teach our children all about life, our children teach us what life is all about."
Friday morning, May 27th was Owen's surgery to correct his right coronal craniosynostosis. The surgery almost didn't happen. The morning before surgery Owen woke up with a 102 degree fever and an ear infection in his left ear.

I noticed pulling and tugging on his ear the few days prior but there were no symptoms present of an ear infection. My paranoia got the better of me and we went to Urgent Care Tuesday night. Doc there said his ear was fine. Wednesday he was okay and then bam - Thursday he has an infection and a fever. When I felt how warm he was my heart immediately started to race and I got so upset. As terrified as I was to go through with the surgery, I didn't want to cancel it either.

As soon as the office of his surgeon's opened, I called them and let them know what was going on. They said to get him into the pediatrician immediately and get him started on antibiotics. If the fever broke before morning, surgery would still be a go. I called the pediatrician right away, explained the urgency and we had an appointment for 10 am.

We get to the appointment and his new pediatrician (we switched from the one he had since he was born - we felt he neglected the situation with his craniosynostosis) diagnosed his ear infection, gave us amoxicillin and sent us home. His fever had already gone down a degree all on its own without medicine.

After we stopped at the pharmacy and got his meds filled, we began round-the-clock tylenol and antibiotics. I gave him a cool bath, gave him liquids to keep him hydrated. We were doing anything and everything to get this fever down so surgery wouldn't be canceled.

As of Midnight he hasn't allowed any more formula or meds, so he got his final bottle and doses of meds before surgery. He was allowed to have gatorade or water until 5 am, so we woke up around 4 to start getting ready for the hospital and his temp was perfect, it was actually under the normal range. We got dressed and ready and left for the hospital at 5:20.

Surgery was scheduled for 8 am but we had to arrive 2 hours early to allow for all of the pre-op exams, etc. I kept touching him every minute it felt like just to make sure he wasn't too hot. We were called back shortly after we arrived, we got him changed into a gown and the nurses started examining him. His temp was great, still under the normal range and he was acting excellent. We didn't hide the infection or fever from anyone and the one nurse tried saying anesthesiology would have to clear him and if he had a fever the day before, they might not allow him to get the procedure done.

After we did the pre-op exams we had to go to another room to see a nurse practitioner and go over some more pre-surgery information. My Grandma and Adam's Dad showed up and were able to come back and see him. My Dad and Step-Mom also came up and got to see him before they took him back. He finally fell asleep in Daddy's arms. He was so tired after being up so early. Anesthesiology came by and said they were going to clear him for surgery. The Doctor told us "I have two boys of my own and I take care of each and every one of my patients like they're my own." I lost it when he said that. That was all the confirmation I needed right there and I knew in my heart my little boy would be okay.

We were holding him and rocking him when a Nurse came in and said to give him hugs and kisses because it was time to take him back. That was the hardest thing I ever had to do - When we buried Audrey, I knew she was gone and there was no chance of her coming back. Handing Owen over to the Nurse and not being 100% sure I'd ever see him again, it broke my heart into a million pieces.

After the Nurse took Owen back for surgery my Husband and I had to take a minute in the room to gain our composure before we went to the waiting room. Our family was out there waiting for us and we just wanted to dry our eyes a little before we went out there.

The surgeon's told us that surgery would take 4-5 hours to complete. We went out to the waiting room and I thought the wait was going to be agonizing and long but thanks to the amazing support system we had there with us, time flew by. We talked about old times, told funny stories and I was actually laughing. I couldn't believe it. My son was right down the hallway in the middle of a major head surgery and I was actually smiling and laughing. About 10:20 am or so the Neurosurgeon came out and said things were going very well, Owen was breathing excellently and the Plastic surgeon was starting his cuts and doing his part of the surgery now. He said Owen had another hour and a half to two hours left to go.

Around 12:50 pm the plastic surgeon and his assistant (who I have to say I absolutely adore. She was my go to woman with every question and concern I had during this time) came walking over to us. His assistant had a huge smile on her face and right then and there I knew my boy was okay and my heart could finally relax. I hugged her and thanked her for what she did. They both filled us in on the procedure saying Owen did great and he did require the transfusion like expected and he was now being moved to recovery. They told us it would be another 20 minutes or so before we could see him. The hospital gave us a little pager to hold and said it would go off whenever it was our turn to go see him.

When the pager finally went off, my heart started pounding really hard. I was so excited to see him, but at the same time, I was nervous. I was afraid of what he'd look like. When we got back to recovery and I saw him, it was like this huge weight was lifted off my shoulders. My Husband was very emotional and crying and I was like the exact opposite - I was relieved and happy. Yes, it broke my heart to see my son like that but I was relieved he was ALIVE and he made it through the surgery with no complications. We stayed with him while he was in recovery and then shortly after he was moved to the PICU.

Once we arrived in the PICU our family was able to come in two at a time to see him. My Dad and Step-Mom came back first and as soon as my Dad saw him, he started to cry. I grabbed my Dad and hugged him and told him everything is okay now - the worst part of this is over.

Owen was very groggy and out of it for quite awhile. He was receiving tylenol and motrin and low doses of morphine to help with his pain. When I finally got to hold him, I was just so relieved to have him back in my arms. We did have a little scary moment after he woke up. His mouth was very dry and you could tell he was becoming agitated. We were allowed to give him pedialyte and as the nurse was preparing the bottle, he got really upset and ripped the art line out of his arm. He had a line that was in an artery in his arm and that's where they were drawing blood for his labs from. Obviously when an artery bleeds - that isn't good. Blood was all over his gown, all over me and the floor. The Nurse reacted very quickly though and wrapped his arm right away and everything was fine. I was so nervous to hold him after that. That just really scared me.

We laid him back down for awhile and he slept off and on throughout the night. He woke up whenever the nurses came in to do their checks but overall, he did remarkably well. Saturday was just a day of rest and observation. He was moved out of the PICU and upstairs to the neurosurgery/plastics floor.

By mid evening Saturday he was becoming quite frustrated with his head wrapping and kept pulling at it and crying. My Husband being the amazing Dad he is held Owen and sang to him and that definitely helped to calm him down. I can only imagine how scary it is to wake up with your head feeling 10x larger than your body, being in pain and not being able to see. My Husband is a rock and he made sure his baby boy was as comfortable as possible.

Saturday night Owen was definitely more restless than Friday night. The Nurses would come in to do their vital checks and he'd wake up. Adam and Addison got a room at the Ronald McDonald House and they went there to spend the night while I stayed with Owen. It was like having a newborn all over again with how often he was awake, but that was more than okay. Anything for my baby boy.

This morning we started hearing talk about us going home. I was extremely nervous at the idea of him going home. His head hadn't been unwrapped yet and his eyes were still very swollen. Everyone assured me he would be okay and his eyes would open very soon. His neurosurgeon came by and evaluated him and said by this afternoon we could go home. They took the wrapping off of his head and that was the first time I really had an "Oh my God, what did I let them do to him?" kind of moment. I immediately cried. I'm thankful Adam was holding him when they removed the wrapping because I wanted to throw up.

We waited around a little while longer and then his plastic surgeon came by to see him as well. He assured us just like the neurosurgeon and nurses did that he was okay, his scar looked great and the swelling always gets worse before it gets better. He was also okay with sending us home and he left the room to sign the discharge papers.

We started packing our things and Adam was taking them out to the car and then it was just waiting after that. We got some prescriptions for his pain meds, some cream to put on his head and his care instructions for once we got home. It was like leaving the hospital as a first time Mom with a newborn baby, that's how nervous I was.

I am still amazed that two days after major head surgery we were released from the hospital. I joked with his nurse before we left when she asked if we had any questions, I said "Can we take you home with us?" She was so great - everyone at Akron Children's was amazing. We feel so blessed and fortunate to have such an amazing hospital that is just minutes from our house.

We are so thankful for everyone's love and support. Our little man is a true warrior. He's already smiling, laughing, trying to climb, doing his army crawl. He's basically back to normal. Although, to me, he was always normal. He just needed a little extra work to make him more perfect than he already was. <3