Some photos... to start off the topic of Craniofacial awareness and Craniosynostosis. It will be a WINNER

February: The anniversary month

This February starts a Wonderfully busy month of anniversaries for us! In fact if we can get through it we will be looking at much better odds.

Our average for Valentines spent together as a couple is 1 in 4.. we are hoping to make that 2-5. What do you think our odds are of getting to spend that day OUTSIDE a hospital?

What has kept up in the hospital for this day:

Feb14, 2006 Tyler was scheduled for his first craniosynostosis surgery. It meant a week in the ICU and a day or 2 in the infant unit. Cranisosynostosis is the premature fusion of his sutures in his head. We were told at that time it was less than one percent chance we would be doing this again.

Feb 14th 2007: Tyler was the one percent and we had to do a total skull reconstruction in the mean time Dallas was trying to get us ready to move to a new state.

Feb.14th 2008 We got to spend together because his seizure monitoring went faster than normal and they were able to get him home faster. So it was the FIRST time we spend valentines TOGETHER.

Feb14th 2009 was met with a child in the ICU at banner desert from emergency brain surgery. So all plans we had were canceled to prepare for him to come home. Home coming from brain surgery includes all carpets cleaned from top to bottom. All surfaces bleach and floors scrubbed till you can eat on them .

So what predictions can you make for Feb.14Th this year?

My Motherhood

4 years ago today I was sitting in a hospital room wondering what the future held for my new little family. Wondering what dreams were going to come true and wondering if I would ever get to take home my son. This day brings forth so many emotions. Not the anticipation of a happy, chubby, screaming child. But of sadness, fear, and extreme LOVE and faith.

Here is our story.
Four years ago I was laying in a hospital bed being told that I was going to have to deliver my son. I was told not to yell, scream, cry, or even throw up.

My only thought......It was to early……

September 20th 2005 : I had been feeling really yucky all day. I had been up for most of the night not feeling well. Having some strange cramps and some strange discharge ( hindsight it was my mucus plug) There was something not right. I called my doctor and the nurse told me to take it easy and not do anything, that I was being a paranoid first time mom. I stayed on the couch watching TV and doing homework. Dallas came home early from work and he had to go to a job interview that night. I decided to go to work. I was sitting at work so no big deal. He was going to drop me off and when my shift was over he would come and get me. Big Brother season finale was on and we were gonna watch it together. I got off work and he was not there yet. I called him and he was on his way so I decided to walk and meet him. BIG mistake. I started to cramp that evening but the Nurse earlier said that if there were less than four in an hour then it was not a big deal. So I was up and down with the feeling that I needed to go to the bathroom. I couldn't go but I really had to. I decided to eat something. It all came back up. I keep getting sicker and sicker as the night went on.

We decided that I had a bladder infection and that we needed to go to the ER. We decided to go to Alta View so that Dallas and his Dad could give me a blessing. ( At the time they lived close by Alta View) Dallas went into the ER and told them that I was sick and outside so if they could help me. They took me into the Labor and delivery part of the hospital.

I had the most wonderful nurse. Her name was Windy. She had me take a urine sample and put on a monitor. The monitor didn’t pick up anything including a heart beat. They had to get the doppler out just to find a heart beat. I could feel Tyler kicking the whole time and knew he was alive but they couldn't find him. They figured I had a bladder infection. They were not in a hurry to get things moving knowing a bag of fluid and antibiotics would send me on my way. But it was more than that.

I was having a baby!! And it was too soon.

The room went crazy. Nurses were everywhere and doctors were called. I was laying there so confused and thinking that it was to early. That he was not really coming and they were wrong. They tipped my bed upside down and started me on Magnesium to stop the labor and gave me shots of steroids to help Tyler's lungs.

There was nothing they could do he was coming.

15 week early.

It was to early. I knew deep in my heart that it was to early. If he came now he would not make it. I would go home empty handed with a broken heart.

They called maternal life flight to come and get me. They got there and I was to far dilated to take on the helicopter. For two hours they sat there discussing what they should do with me. At that point they called pediatric life flight to take my extremely tiny infant somewhere where they could help him. You see, we made the wrong choice. We went to the wrong place. We went someplace that didn't take care of sick babies.

With me staying and Tyler going they decided to do a c-section at that point and do it without being in an emergency situation. My water had not broken yet. His feet were hanging out. He was coming. The nurse put in my catheter and my water broke.

It became an emergency situation.

As I was wheeled into the OR I had to leave the love of my life behind with no idea how or what the future held for our son. We loved him so much but had never met him. He was too soon!!! As I moved onto the operating table from my bed I had another contraction. Up till this point I had no pain medication. The anesthesiologist decided that I had had enough and didn’t even wait to start putting me under. The last thing I remember was them draping my belly.

Waking up I immediately asked for Dallas and they let him in and he told me that they were working on him and that he had seen him and that he was alive. Dallas had been watching them do CPR on our little son. I then went back to sleep. On the way back to my room I remember being wheeled past my parents and everyone telling me that he was beautiful. They were going to let me see him before they took him to LDS or PCMC. They wheeled him into my room. I couldn't really see him because I had to take my contacts out to have surgery. But Dallas gave him a blessing and I KNEW that we would be okay.

That day our family would be started that day.

Tyler Kenneth Brown, my sweet, amazing and miracle son was born at 1:24 AM on September 21st 2005. He weighed 1 lb 11oz. He was 13 inches long. He was life flighted by helicopter to LDS hospital where he would stay for 30 days. He would have one surgery, and suffer from grade 3 and 4 brain bleeds. He was transferred to have a reservoir placed for Hydrocephalus. He would stay at PCMC for 63 days. He would endure 2 more surgeries( resevoir placement and ROP stage 3) and many ups and downs. He came home one day before his due date…. December 23, 2005.

In four years Tyler has had countless surgeries. ( all since being home)
*Feb. 14th 2006- Craniosynostosis skull reconstruction
*April 2006 Emergency Shunt placement
*May 2006 Emergency Shunt revision
* Feb. 14, 2007 Total skull reconstruction
*September 2008 Emergency shunt revision
* Dec. 2008 Dental work
* Feb. 2009 Emergency Shunt revision

We have done Physical therapy and Occupational therapy once a week for almost 4 years. Speech for 2 years. Music therapy for a year. He has started botox therapy where he gets numerous painful injections into his calf muscles. He had weekly weight checks for almost 2 years.

He has had a walker, 4 sets of AFO's, and every six months an in depth eye exam. He has six specialist we see on a regular basis and our regular pediatrician. ( and we were able to recently return to Dr. D and Dr. M) Dr. Marissa was one that I contribute my sanity to for one year and then some in the NICU and for weight checks.

He has had several diagnosis' including Cerebral Palsy, Low vision, craniosynostosis, hydrocephalus and nystagmus and a coloboma ( which is so incredibly CUTE!)

Despite all of this he is a GIANT. My previous post said I would change things. And I would. But only to make it easy for him. I wouldn't change the smile and the Spirit he carries with him.

He has changed my faith. He has instilled a knowledge of a Savior. He has instilled a power of unconditional love and a dying desire to make his life easier somehow. He has taught me that he will get up. That nothing will keep him down. The dreams of him running circles around my legs is just different than it was in my head. Now it includes limps, braces and slow moving circles but he was and has deified all odds. He has shown me that I don't know myself. I don't know love and that I didn't know how much he would impact me and my life.

On this day, four years after the emotions of the last 4 years are very real to me. I can still hear the beeps of the monitors and the feeling of anxiety when I see them bagging my dying child. I see them and hear them EVERY TIME I close my eyes. Yet I can't help but hug him every morning and think of how lucky I am. I can't help but cry when it is hard, and as I cry because it is hard for me I realize that it is harder for him.

On this day I can cry tears of thankfulness, devotion and complete and utter love for that little boy who makes my heart melt. For a smile that takes my breathe away...

For my miracle.

I have no Idea how to share this one...

I have been told that I am negative towards my child. I have been told I am hindering HIM and what he can be. Although I disagree with those statements I truly feel that I have had a realistic outlook on his life as a preemie and the long term issues that we would be facing.

When we found out we were pregnant I was still determined to start at the U and finish my degree fro Child development and get my certificate for child life specialist. I had the same instructor for 3 of my classes and I was really looking forward to my classes.

The first week of school came and I was doing better at not puking during classes (of course after class and in between was a different story) but I let my teachers know that I was pregnant and that I was actually going to be able to have the baby the day of my last final. That was what we thought.

Fast forward a few weeks.. We are getting ready for our first test and we had to cover prenatal stuff. We were learning about the age of viability. We were taught that according to our text book it was 25 weeks. That was the *magical* age. We were taught of the outcomes and the hardships.

Then came *that day*. I was 25 weeks. In fact I was 25 weeks and 3 days. I was VERY sick and I was paranoid but there was something wrong and I felt it. The rest of it is history. Ty came and we started on our journey.

Some issues we faced were:

PDA
IVH
Hydrocephalus
ROP
Craniosynostosis

After the PDA was fixed it was fine. We have had no other issues with his heart. We still don't see a cardiologist.

The Brain bleed was severe. It is severe. He has a grade 3 and 4 bleed. We had no idea what our outcomes would be because of it. We were told many things. But we were told that no one could predict what he could do. That is what we held onto. We jokingly talked about pimping out his wheelchair if it came to that. AND then the relief when he was determined to crawl and now he is determined to walk.

We though the hydrocephalus was resolved but after the reservoir was taken out we had our complications. He had a emergency shunt placed and then revised. Nothing since.

The ROP was severe and was treated with laser surgery. We were warned of the chance of CVI and yet some how we escaped that diagnosis. Even with the bleeds.

His craniosynostosis was a direct result from his prematurity in which we fixed and feel like we have dealt with that the best we know how.

What long term issues?

Ty has a limited vocabulary. BUT we are working on it with speech therapy. They say his receptive language is actually above average. Meaning he will do whatever we say.. Which is true. He follows directions so well and is VERY well behaved. PLUS he says and mimics some of the absolutely cutest things. Makes your heart melt.

He has a few sensory issues. All of which are a dramatic change from who is was last year. He won't scream when we vacuum and he eats just about whatever you put in front of him ( especially chocolate) he even tries just about every thing. He has even enjoyed a few shrimp scampi!! He is getting use to noise but that one.

We will always deal with the shunt on a as needed basis. So for us it is not big deal and we deal with it when we need to.

His eyes. Well they tell us he is legally blind. But then as we go back and do his therapies his eyes improve and we can see a huge difference in him. So we will just plug along doing what we need to do.

The biggest is his mobility. Although he took his time hitting his milestones he has some spastic muscles. Although he falls in the normal range and no one can decide on what to *call it* The neurologist feels it will just all fall into place and the PT we are currently seeing is helping us a lot.


So those are the long term issues. Not such a bad list right. RIGHT!!! WE are so happy with his progress and the things he is doing. So, after all the list... I took Ty to PT today. He is doing so well with this new place. He LOVES the swing there and we were working on his walking today with his AFO's. After we got them on the PT wanted to "try" the pediatric walker. She said that it usually takes kids a while to get use to them and to use them. We raised it up to the highest setting and set Tyler in. You will never guess what happened!!!! HE CRUISED CLEAR ACROSS THE ROOM. He did amazing. His left side of his body is a little less strong so we will be working on that but we have decided that for Ty and his mobility he is getting a walker. The PT doesn't think we will use it long, but if we do we do. I was so proud to see him walk. He has now exceeded EVERY expectation of the HORRIFIC Nurse practitioner that we had and he is continuing to do more than we could ask for. We are so proud of him.

Ty and more Ty!!

There have been several things I wanted to write about this week and I have totally spaced them. So since it is 3:00 am and I am still trying to decide how to sleep ( laying down in my bed or sitting up in the love sac.) I thought I would try to get it all down.

First off... We took Ty back to the park in our neighborhood tonight. He LOVED it. He has wanted to be outside all day. In fact he has spent most of it outside. He went out and took out the trash this morning and stayed out and threw rocks, then washed down the house and the plants with Dad this afternoon. We tried to take a nap but he wouldn't have anything of that so we played and him and dad cooked dinner. ( which by the way was super yummy and I loved it.) After dinner we went to the park till I had to get ready for work. Ty LOVED the slide and he even went by himself but his all time favorite is ball with Dad. He laughs so hard. He gets so excited. His shoes are to big because of his braces and so we would try to stand up but he couldn't because his toes wouldn't bend. We took his shoes off and he was off. He was so funny. We can't wait for Grandpa to come so he can take Ty to the park.

Second.... We finally are going to see the "doctor who can't be named." We go on Monday. I have avoided this visit for 2 years. But his sleeping can't be helped by his pediatrician any longer. SO... wish us luck. I am having Dallas go with me because I don't want all the information myself. I need a big strong strapping man to come with me. News ( whether good or bad) is much easier to handle with Dallas there.

Third.... Several months ago I was contacted by the Jorge Posada Foundation to be a mentor and to participate with others who are just starting their Journey with Craniosynostosis. I was contacted with my first family the other day and we had a wonderful chat. They are heading into Primary children's in the next few weeks to meet the neurosurgeon team. We wish them Luck and hope that baby Peter will do well.

In response to that particular part of our lives I am going to share a few photos and later this week will share our story so that others can find it... Don't you love Google.

This was taken right before we had surgery. Notice the dent in his head. The "bump" is his reservoir that was taken out during his surgery. Notice also how Long his head is.



Immediately following surgery. Notice the change in his head shape. It was almost immediate. The tube is a drain that would be taken out a day or two later. The blue tube at the top is his breathing tube. He was still on the vent after his surgery. ( that was the hardest part for me.)

Ty's second surgery was a total skull reconstruction. All thought it was a little more invasive he had less visible signs of needing surgery again. In fact the only visible sign was his sleeping had change ( holy shocker) and he had had no head growth in over a year.

Here is the most recent. It was in February of this year.
Immediately after his surgery. He didn't need the breathing tube for a long time this time around but he still had some oxygen needs.



With his dad.. The crease on his forehead is the drain that came out later in the day. He was swollen but not as much as they had prepared me for.




The scar was done on the same one as the last surgery and it looks really good now. You can't even see it



The day before we were released. He seemed pretty happy as long as Dad was there.



We are headed down to get a CT scan and shunt series before getting discharged. Because of his shunt we had to stay an extra day to make sure we didn't have a malfunction. He looks like he likes the wagon but he really didn't. Glad I got the photo before the meltdown.



That is our journey in photos for those who are interested. In a few days I will re post his story. He is such a miracle kid. We sure do love him.