2 weeks post op!

Well we are now almost two weeks post op and Brandon is healing absolutely great. What a crazy ride! Two weeks ago I couldn't even believe that I had put my tiny little boy through this and now... well now it all seems like a dream, granted not a very good dream but a dream none the less! We went for our follow up appointment today with Dr. Elton his neurosurgeon and got the O.K on his healing and visible facial outcome. There is some minor swelling still but everything looks a.o.k to him. We will have to go back to both Dr. Elton his neurosurgeon and Dr. Schmelzer his cranial facial surgeon (plastic surgeon) on May 12th for his 3 month follow up. They should be able to see the outcome better by this date because the swelling should be gone.

Dr. Elton is such a wonderful doctor and he let me take a picture of him and Brandon!

Side view of my custome made noggin!

Granted there is still some pretty visible bruising but this looks worlds better than even two days ago!

Day 7

You should see the other guy!!!

Day 4, peakin through his slits!

Brandon's Article!

Brandon had an article written about him by the wonderful Mesa Tribune journalist Michelle Reese! Thank you Michelle!

http://www.eastvalleytribune.com/story/150385

Day 3 and very swollen.

Day 1

The road to recovery.

Brandon underwent surgery 2/5 to correct his prematurely fused sutures. We arrived bright and early on Friday morning at 5:30am and my poor baby wasn't allowed to eat anything starting twelve hours before the surgery so Brandon's last meal had been at his normal bedtime at 6:00pm the night before. Even with no food in his belly he still seemed to be in good spirits. We were checked in and waiting in pre-op before we knew it. Finally after what seemed like a very long wait Dr. Elton and Dr. Schmelzer came into the room to let us know that they were ready. Marvyn one of the nurses that were going to be in the room during the operation explained what was going to happen regarding anesthesia and that he would update us periodically throughout the whole operation. I kissed my little baby's bulby forehead for the last time as tears were streaming down my face.

We were told that the procedure would take roughly 4 hours but about two hours in Dr. Elton came out to tell us it was a success and Dr. Schmelzer was finishing up with the stitches. Relief. We were to go to the PICU waiting room and as soon as Brandon was transferred into his bed we could go in and see him. I was so ready just to see my little buddy, to touch him and make sure he was whole. Finally around 1ish he was settled into his room and resting comfortably with the help of some morphine. I don't think i have ever hurt more inside in my whole life than i do now. I know that i did the right thing and i know that the swelling will go down and I will be able to recognize my beautiful baby boys face again however I cant help but question why i did this to my sweet little baby.

We are now on the other side. The swelling is bad but I think i now am noticing it starting to go down. I am so ready to see his sweet little smile again. I am ready for him to laugh. I am ready for him to not hurt anymore.

Pre-op over and counting down.

We had our pre-op appointment Monday 2/1 and it went as well as to be expected. I am very sad to think that pretty soon my baby will look different. I love his little bulby forehead and dented nose. We also had his blood work done this day and I feel so sad. I couldn't even stay in the room and comfort him because as soon as they started to wrap him up in order to keep him still I semi wigged out, tears, studder and all. Dad had to go back to work after the Neurosurgeon pre-op appointment so it was only me during the blood work and I couldn't even be supportive for my baby :( Sad, its definitely hitting me, I feel like this is all my fault. I know this is not the way I should be but how can I help it. My little buddy is small and I cant explain to him that we are doing this so that he will be socially excepted and have a better chance at life. I feel so numb. I feel horrible. I feel like its all my fault. Tomorrow is the big day.

CT scan

Raising Awareness!

I just got the most wonderful call from my neurosurgeon today! Brandon is going to have his procedure done with Dr. Elton and Dr. Schmelzer of Banner Pediatric Specialists/ Cardons Children Center and Dr. Elton called me personally to ask if I would be ok doing an interview regarding Brandon in an article regarding Cranio. Tears immediately started to come to my eyes. Of course I would love to. I think about all of the support I have received from other parents whose lives have also been changed by Cranio and I feel honored that I too may be able to help others who are going down this same path. In the beginning I never even knew this condition existed let alone that I myself would have a baby with this condition. I do not have all the details because of course my listening skills decline when I'm in the throes of information overload however I will be receiving a call from the author within the next couple of days so I will keep everyone posted!

Pull it together girl.

I wasn't expecting to get THE CALL today however I did. It was Banner Ped's calling to tell me that a date has been set. February 5th, that's a Friday and we will need to be there at 5:30 am for check in with the time being set for 7:30. I just listened stunned, crying, the lady on the other end must be used to this she just waited and asked patiently if I was ok and ready for the instructions. Every time I think I feel strong like I can do this, we can do this, then something else breaks me down. We go February 1st for the pre-opp visit and to have Brandon's blood work done. I cried again. After the phone call was over I called my mom and cried again.

The Neurosurgeon... The Diagnosis.

On Monday December 29th 2009 after months of talking about Brandon's head and about what the right thing to do is I decided to call and make our first appointment with the Neurosurgeon. I took the day off of work and Eric and I both went to our first appointment with Brandon. We saw Dr. Scott Elton at Banner Pediatric Specialists. He is a wonderful man with great bedside manner. He came in, looked Brandon over and said that to him it feels like Brandon's coronal sutures were already fused which might explain why Brandon's head was just a little off in shape and size. My heart just sank and I don't think I made eye contact with the man more than 3 times after that. I heard him say surgery and correction and pressure but my mind was just racing. He wanted to do a CT scan to be able to get a better idea of what was going on and thanks to my new insurance what could have all been answered in one day became 3 separate visits. We went back to Cardons Children Center on Friday January 8 for the CT scan which thankfully only took about 3 minutes and even though Brandon hated it the Tech was quick and Brandon didn't have to stay strapped in for very long. Then we went back for the follow up with Dr. Elton on Monday January 11, 2010. My wonderful mother in law went with us for support and to lend a second ear seeing that I tend to tune out when things get stressful. Dr. Elton came in and pulled up Brandon's CT scan and I think if you could of taken a picture of our reaction it would be of three people with their jaws hitting the floor. There before my eyes was my beautiful baby's head and a soft spot that was so large it spanned from well below his forehead to the back of his skull. I would have never guessed it to be soooo big. Tears immediately left my eyes. Dr. Elton then went on to explain that Brandon has Bilateral Coronal Synostosis. The three words that I find myself saying over and over and over again in my head. The rest of the appointment was a blur to me but basically Brandon would need to have correction surgery to open the skull and create more room for the head and brain to grow. I still feel shell shocked when I think about what is to come, about the pain my baby will go through. The doctor assured me that they will do everything in their power to make sure Brandon is comfortable but I still am scared. That last thing any mother wants to do is have her baby hurt. I know this is the right thing to do, I know Brandon will never remember it but somehow I still feel wrong about putting him through it. As we go forward I am glad that I have the support of my family and friends. And luckily I have the best mini therapy group at work, those girls are great and they let me cry. Next up is the appointment on January 22nd with the pediatric eye specialist to get a baseline of where Brandon's vision is at. I know that he can see just fine but the Doctors want to have an idea of what his vision is like before the surgery is done. We also have to get Eric blood typed because Brandon is A+ and I am O+ so if Eric is A+ than he would be the best person to be able to donate blood for Brandon's surgery. If not then I already have my back up person ready to go.

This is definitely a Craig baby!

Looking at Brandon is like looking at myself. I see my dad, my sister and myself in Brandon so much that its just amazes me. Brandon was born with the same large soft spot that both my dad and myself has, he has our eyes and he even has the same single palmer crease on both of his hands that both my dad and myself have. I will never forget how when they brought him to me at the hospital just by chance I happened to turn his little new hands over and my heart just stopped. There right before my eyes was this single line going across his palm! The same single line that I had. My mom always called it my simian line but after bring Brandon home I started doing a little research on it and found that only 1 out of every 30 people have it and that it is an inherited trait. Just one more piece of me that I saw in him!

Here comes Brandon!

I started having real labor contractions on 7/11/09 and by 4:00am the next morning we were headed to the hospital! We were ready to go! We had the peds specialist there and now it was all up to me. Man oh man was he not wanting to come out. I pushed and pushed and pushed until I screamed that I couldnt push anymore. Finally at 12:21 that afternoon with the help of the a vacumn out popped Brandon. They held him up for me to see then rushed him over to the baby cart. I was exhusted but as soon as I heard him cry I was releaved. They finally handed him over to me and he was beautiful, a full head of hair and all of his fingers and toes. The next couple of days at the hospital were stressful. They did an MRI and X-Ray to make sure that he was ok due to the vacumn and the fact that my little boy had an abnormally large soft spot that covered the back of his head all the way up to the forehead. For me this was the answer to the frontal bossing. Most babies are born with only the front fontanal still open however Brandon's fontanal reached well below his forhead. His forehead of awesomness! They told us to follow up with with his pediatricion and a neurosurgeon but after looking in his eyes I new everything would be alright.

Its a boy!

This pregnancy was so much easier on me in the beginning than my previous pregnancy with Andrew. My skin never broke out, I never got morning sickness and I was able to wear my regular clothes for so much longer! My husband and I went in for our normal 20 week ultrasound and found out we were having a boy! (I already had this premonition!!) A BOY!!! We were so excited and we already had a name, Brandon Danger Longtin. Our due date was set for 7/19/2009 right smack dab in the middle of an Arizona summer. After our ultrasound our doctor informed us that I had a low lying placenta and would need to come back in for another ultrasound at 24 weeks. She assured us that this problem almost always corrects itself and I was secretly excited because that meant we would get to see our baby again. At 24 weeks we went back in for the second ultrasound and during this visit the ultra sound tech kept going back over his head, I honestly never even thought anything about this. Afterwords the doctor informed us that indeed my placenta had moved to where it was supposed to be but there was a new concern: Brandon's head had what she referred to as frontal bossing and I was to have a level 2 ultrasound. My heart just sank. Even writing this now I remember exactly how I felt and it brings tears to my eyes. I must have looked over his ultrasound photos over and over and over again till I nearly drove myself crazy. Did I see it? Was I making myself see it? I just couldn't see it and to me they looked just like Andrews photos. At 27 weeks we went to a specialist and had the level 2 ultrasound done. It was horrid! For two hours I laid on my back while they imaged every single part of his body. The Ultrasound tech went over his head and brain with such scrutiny. We were then escorted into a specialists room where a lady who couldn't shut up went over and over with us what they saw. It could be this and that and so on and so on. She advised that we were to come back in another 4 weeks to see how Brandon was progressing. As Eric and I left I had already decided that I would not be going back. There was nothing further they could see from an image and in my mind I was happy knowing that he had all is parts and his brain looked fine. We went to our scheduled 32 week appointment and the OB laid into me, "why hadn't we gone back for the second ultrasound?" and how she would not deliver at the birthing center unless I went back and they signed off. I left a ball of tears. I could not go through this again. We went at 33 weeks and I was huge! This time I did not have the same specialist doing my ultrasound and she did not have very good bedside manners. I guess she wasn't able to get the arm measurements so the original specialist I had had to come in and try to get the measurements. Well as soon as she started trying I just broke down, I could not hold it in any longer and bless her heart she took this as the que for us to be done. Again they told me about the frontal bossing and also what appeared to be a larger than normal tongue and a depressed nasal bridge however she didn't see any reason why I couldn't deliver at the birthing center just as long as a pediatric nurse specialist was there for the delivery. I was so stressed but determined to make the last couple of weeks as enjoyable as a large uncomfortable pregnant women in the middle of summer could!