Check out the before and after section I made!
You will be shocked!
2/2013
Brock is a perfect 7 year old. Smart, adorable and athletic.
We never had to go back for follow up surgeries or testing. No one (besides his hair dresser) even notices his scar and he
is a total toe head. I look back at the experience and am so thankful for the staff at Denver's Children's Hospital and my
family and friends who brought us meals, came for conversation, and who helped in any way possible.
10/01/2006
It has been one year and one month since Brock had surgery. It seems like it was so long ago, yet I still get goosebumps
thinking about it because the memories are so vivid.
One year ago Brock had this horrible cut on his head that everyone would stare at and talk about as you walked by. Now,
if they are talking about him it is about how cute he is, or how big he is for a 15 month old.
One year ago I was freaked out about anything or anyone coming near his head. Now he has a huge concrete burn where he
wiped out running at the park.
One year ago I was so worried that he may have delays from the surgery, etc. Now I wish he would stop being such a big
boy and slow down...
What a difference a year makes.
6/9/2006- Brock turns 1 this weekend...what a year. He is doing so well and is so freakin cute! He is all boy, but loves
to give hugs and kisses. He loves balls and his dogs more than anything.
He is beautiful. No one can believe that he has had major surgery on his head.
I will post more this weekend!
Amber
3/1/06
Well, we are back...
YAY!!! No more surgery. The Doctor said that the bossing in the forehead would most likely get less prominent as Brock's
facial features grow up. We will see him back in a year :)
I am so relieved.
2/24/2006
Well, I have finally made the appointment that I have been dreading. We will be going to see Dr. Winston on Weds the 1st.
I am scared to death. On one side, Brock looks great. He does have some bossing in his forehead that I am worried about. Who
knows if it is really serious, or if I just notice it because of everything we have been through. I am ready to see what they
say, but I swear if he doesn't give us more than 5 minutes of his time, I will blow a gasket :)
On to the rest of our life...
My father-in-law has colon cancer. They have removed the tumor from his colon, but now he has to undergo chemo for 6 months.
Please keep him in your thoughts. They are an amazing family and he keeps everything together.
We had a great time at DisneyWorld. It was exhausting, but to watch Alana's eyes light up was the best!
I will update after the appointment.
Amber
1/23/2006
WOW...2006! I am another year older, my first baby is 3, and my beautiful
baby boy is growing up way too fast!
Brock is commando crawling and pushing himself up like he wants to stand
up already. SLOW down child! He is an adorable little boy. He is a bit of a mama's boy, but I am NOT complaining. I love snuggling
and carrying him. Thank goodness for baby carriers or my arms would have fallen off by now! If you have a infant or toddler,
you need a sling! www.goo-ga.com, www.babyhawk.com
etc, etc!!!
Alana is a little pistol! She is into princesses and ballet... a girly girl.
We recently had her rrom painted pink...whoa is it PINK! She is thrilled right now because we are taking them to DisneyWorld
in 2 weeks! She will be able to enjoy lunch with Belle, Cinderella, Mulan, etc. I cannot wait to see her little face light
up!
We are doing well. Settling into the new house and nesting. We hired painters
so it is almost full of color (earth tones of course). I LOVE it! I don't feel like a house is a home until there is a little
color on the walls. Ken and I went and picked out some art tonight. I am excited to get it hung. If anyone knows me, you know
that I am ready to make this house a home, and make it my own. Ken wanted to move here...I fought it. Now, I have found a
place for me and my family to grow up.
On to the stresses of life...please say prayers for Ken's Dad who has been
having some health issues and is waiting for test results.
Please cross your fingers for my dad who is awaiting word on his job.
Brock looks fantastic. His forehead does seem to be bossing out a bit further,
but I am trying to think positive thoughts. I am going to try and make an appointment for the end of Feb. If there is a chance
for a second surgery, I want to know.
I get depressed just thinking about it. I don't know for sure that I can
handle going through that again. I worry that because he is older it will even be harder than before (if that is possible).
I am not going to get ahead of myself, but I had to write down my worries and concerns...that is what this blog is to me...a
listening ear that doesn't offer solutions, or tell me that I am seeing things. Sometimes, even the people closest to you
only see what they want to. I may be an optimist, but I am even more a realist.
If anyone is still reading, thank you :)
Good night!
Amber
11/29/2005
This last month has been a whirlwind. We put our house on the market, sold it, packed up and moved in 1 MONTH.
We love our new house and neighborhood!
Things have been going fantastically. Brock looks great, feels great and acts great. He is such a smiley baby!
Everyone is finally healthy in our household! PHEW!
Just wanted to touch base and let you all know that we are still around!!!
Talk soon,
Amber
10/24/05
Well, I am over my little pity party. I am not going to get ahead of myself and think that Brock
WILL have to have another surgery. Right now, he looks great, feels great and acts great. If over the next few months I notice
Brock's head shape returning to the saggital shape, I will worry.
I think the reason I was shocked and sad about after the appointment is that there was a miscommunication
between the dr's and nurses and it ended up being worse than it had to be. I do not do well with negativity.
There will be times that I may allow worry to take over in the next 6 months,
but hopefully I can trust that everything will be fine most of the time. Maybe my journey isn't over with craniosynostosis,
but I really HOPE it is.
In other mommy-hood news...Alana has croup. I have a very sick little girl
in bed with me. Of course Ken is out of town and I am trying to stay awake and alert. She is sleeping now, but in a bit I
will need to give her more steroids and maybe head to SkyRidge. Thank God my best friends are also my neighbors! Kelli, Dionne...THANK
YOU! Is it not crazy that right when you think you are at your limit another thing goes wrong?
Oh well, it all makes us stronger...right?
Amber
10/19/05
I just got back from Brock's 6 week check up with the neurosurgeon. He walked in the room,
said head looks great, but I would have preferred that his bones hadn't grown together so soon...
What does that mean? It was the one thing I didn't want to hear. I "could" have to relive my nightmare
in 6 months-year. I wasn't expecting this. Most of the time they do not see you for another year, but we have to go back in
6 months to check this regrowth. I just CANNOT believe this. What did I do to deserve it? I know I am being negative, but
how do I not be????? I am so broken-hearted.
Update: Just got back from Brock's 4 month well baby
visit! Brock is 16 lbs 15 oz and 26 1/4 inches! What a big boy!!!!
10/16/05
Can you believe it has been 6 weeks since Brock's surgery? I can't. It seems like forever ago,
yet it seems like yesterday. Brock is doing so well. He has had an upset tummy today, so I am watching him for dehydration.
His head incision looks great! We meet with Dr. Winston on Weds, and I am both nervous and excited to hear what he has to
say.
The last few months have been such a whirlwind, and now Ken and I are going to be moving. I am
sad and excited at the same time. A lot has happened in this house. We brought 2 beautiful babies home to it, and there are
so many memories!
9/28/05
Brock's incision infection looks MUCH better today, so I do think it was just a abscess. YEA!!!!
9-26-05
His appointment today showed that he does indeed have an infection. Right
now we are thinking it is a stitch abcess that will be corrected with a 7 day course of antibiotics. We will go back to the
clinic on Friday to check it again, and then again the next week. I am praying that's all it is. I know that if it is deeper,
that would be bad, but I do not know what it would entail, nor did I ask.
Brock looks great and acts great. He is such a sweetheart. As the nurse was
pushing and prodding his wound, it broke my heart. He was flirting with her before she starting hurting him!
I will post more as I know more, but for now, lets all hope the meds work!
Good night!
Amber
9-26-05
Brock has an appointment today at Children's. He has developed some kind
of infection on his incision. I will post a couple pics below.
Hopefully, a little antibiotic can clear it, but I will let you know after
today's appointment.
9-15-05
Fall is in the air! It has been freezing here the last couple of days.
Brock is doing wonderfully. Parts of his scab have fallen off and it is amazing
underneath...I cannot even see a scar. I never thought I would be able to say that after seeing him in the recovery room.
Everyone has been
amazed at how good he looks, including me.
He is the smiliest baby :-) I know that the experts say that it does not
cause the baby any pain, etc, but I have a hard time believing that now. It seems like Brock had a massive headache that is
now gone. He is always smiling and laughing at me. I LOVE it!
At his appontmant on Monday they checked his incision, and asked me questions
about his schedule, etc. I must tell you all that we are one of the lucky FEW that this did not interupt his sleeping, eating,
etc. I have a very good sleeper! He has been up the last couple of nights to nurse, but goes right back to bed. We are very
blessed.
They also weighed him on Monday...15 lbs 15 oz. 3 months old and a complete
chunk! Alana only weighs 27 lbs, so this is pretty funny. The nurse said everything looked great and we will meet with Dr.
Winston in about 6 weeks.
I have been amazed at how well Brock has done. I was such a basketcase
for 3 months, that I shocked myself by the strength I had. I do think that Ken's inability to deal with this has made me even
more independent and strong.
We used to shield his head from people, but now we wear his scar with pride.
He is an amazing little boy! We have gotten some interesting looks, and second looks, but I am confident no one will have
any idea he has a scar until he wants to shave his head...
Brock just woke up, so I will post again soon!
Amber
9-9-2005
Wow, it has been a week and a day since surgery. It seems like a lifetime
since we handed Brock over to the surgeons, yet it also seems like yesterday. This week has been great. I have been able to
manage his pain with Tylenol and he hasn't had any medicine for the last few days! Kids are so resiliant!
The fear and dread of the last few months is over. Once we handed Brock over
to the nurses, life has really changed for me. You know how when you have been on a long trip and you are driving home from
the airport, and as you watch everything fly by you, you feel like you are coming back to civilization? That is how I felt
when we drove home from the hospital. It was so surreal. At that moment, I knew that the worry had taken a big chunk
out of my life and taken away the enjoyment of my newborn was over. I can honestly say that I feel like I am back from the
living dead, and it feels great! I will no longer cry at the drop of a hat when talking about my baby boy.
For anyone who is facing this surgery, please know that the worry you feel
right now will soon be over.
Brock has a check up appointment on Monday afternoon. I am so excited to
show off how great he looks!
We are going to dinner, so I will post more this weekend!
Amber
9/5/2005
Happy Labor Day Everyone! I hope you are all enjoying the weather and bbqing
outside :) Brock and I, on the other hand, have slept most of the day away. Last night was really rough. I couldn't manage
his pain until I finally got some Motrin in him around 5am. He just will not take medicine down easily and only Tylenol comes
in a suppository. We all know that tylenol doesn't help with a migraine, which is what I imagine Brock is feeling.
It was a long night, but this morning he seems to be doing much better.
As you can see from his picture...he looks
great, now I just want him to feel great. When I lay him on the back of his head he screams bloody murder. It is really hard
to hear your baby cry when there is nothing you can do.
Alana has been great with him. The first day when she saw him she was petrified.
Now she gives him kisses, etc, and tells me about his big owie. We are being extra careful with him. It will be harder
to get her to be gentle when his "owie" fades more.
I have to send out a big thank you to my Mom's club. I have been fed on a
daily basis. Without them, I think my family would be living off of Ken's homeade dinners, pizza and Taco Bell :-) You
all are the best!
Also, thank you to our families for taking care of us and our house, dogs,
etc. Whether it was cleaning our house for us, giving us a much needed break or diaper change, playing with Alana, or buying
presents...You all have been so wonderful. Thank you.
I am really tired and worn out, but I am so glad that we are done dreading
surgery. I do think that the unknowns are worse than the recovery period, no matter how many hours I sleep (or don't sleep).
Time to try and force motrin down Mr. Brock. I will try to post more later!
Amber
9/3/05
We are home. They discharged us around 5 pm. I am a little nervous to be
home, but at the same time, it is nice to have the comforts of our own bed and food. I just cannot believe we only stayed
2 nights when the usual is 3-5.
Brock looks great. I cannot believe that my beautiful baby looks even better
than before. His head has completely rounded out. I will post pics once I unpack my bag.
The last few days have been a whirlwind. I hope to really tell you about
them when I feel like everything is under control here.
Last night was great. Brock went to sleep around 9, and I went to bed around
11. We were co-sleeping at the hospital (just like home), well, at 5 am he woke up to eat. I was really annoyed...I couldn't
believe that the nurses had not checked on us all night. Next thing I know, our nurse comes in with Brock's ibuprofin. As
she is attemping to give it to him, she tells me that Brock and I slept through all of their exams, vital signs, etc. last
night. I am NOT a heavy sleeper, so this was a bit shocking to me. We must have really crashed! Right after she left we both
fell asleep again and awoke around 9am. It was so nice having our own room! At 5 (the first time he woke up) both of his
eyes were swollen shut. This was so sad to see and all I could think about was how long the day was going to be. Luckily,
at the 9 am wakeup one of them was open, so I never had to see him really pee'od. By the afternoon they were both open :).
I can see what Brock looks like now. The swelling has really come down. Ken was a bit shocked when I called him to tell him
that we were being discharged today, but when he walked in and saw Brock, Brock gave him and Alana a HUGE grin! He said "
I can see why you are going home now!".
We have had some issues. Not only did Brock not like his lines, he also does
not want his medicine. If its not breastmilk, he will gag himself until he throws up. This is a bit difficult, and I am really
nervous about controlling his pain while we are home. We did get suppositories, but the stronger stuff only comes in liquid
form.
Another hard thing is that we have to make sure he sleeps on the back of
his head. If he doesn't, that side of his face gets swollen and he will have a flat spot on the side of his head. The reason
why one eye will swell is because he was facing me when we were sleeping, etc.
The last three months have been difficult and stressful. I am so glad to
be on the OTHER SIDE of surgery and everytime I look at Brock I am amazed. Our dr's did a great job. They told me today that
one of the reasons that his head is already so round is because not only did they cut out all of the top bone, they made a
tick tack toe cutout on each side. This has really allowed the brain to breathe and expand. You all are going to be amazed
when you see him!
If you remember me writing about the couple we met while giving blood, I
am so glad to have met them. We shared the same experiences at the same time. They were in our triage room that first night,
and they were our next door neighbors last night. Their son also looks amazing! He is such a cutie. The nurses accidently
ordered him a pink helmet (he is 16 months old). He hated that helmet. His dad made a joke that he is going to write on it,
'This is your daughter's helmet', or something goofy. They should get a white one by Tuesday or Weds. They are a really neat
family. We took walks around the hospital together with our babies. I really hope we all keep in touch.
One of these days, I want to write a lot more, but I am exhausted and heading
to bed to cuddle with my beautiful baby boy!
night!
Amber
9/2/2005 A elderly volunteer just came to my room and forced me to leave...in a good way. He is going to sit with Brock while
I go take a shower. I have not left this room...until now. This floor, 5 North, shares 1 Shower...
one of the best showers I have ever taken. And
much needed!
9/2/05
Quick update...Brock is doing really well. He is such a fighter. In the
past 24 hours he has managed to pull ALL of the lines out. His head drain was first last night, this am he pulled out one
of his IV's, and tonight he pulled out the other one. He is on Tylenol and Ibuprofon for pain now. His eyes have each been
swollen shut today, but never at the same time.
They are actually thinking about discharging us tomorrow. It scares me
to think about.
We are in a private room now. Last night we had to share with 2 other kids.
Unfortunately, no internet, so that is why there is no emotion in this post (we all know that is not like me).
I will post more later!
Good night!
Love, Amber and Brock
9/1/05
Hi all! I am sorry it took me all day to update
you, but the wireless connection is touchy here.
Everything went well. We got here around 6am,
filled out paperwork, and did the pre-op stuff...washing his hair, etc. I will be adding pictures to the pre-op pics page.
At exactly 8am, the nurses came in to get him. This was one of the hardest parts of the morning. It is not easy handing your
baby boy over to a stranger.
The anesthesiologist really warned us that sometimes
the lines take over an hour, so do not be alarmed if our first update was that they were still trying to poke him. Luckily,
the first update at 9am was that the lines went in the first time and they had already been operating for over 20 minutes!
Around 10 am Ken and I were waiting impatiently
for the next update. When it didn't come at 10:30, we started getting worried. Next thing we knew, Dr. Ken Winston, Dr. Ketch
and the anestheologist were heading our way. They were DONE! The actual surgery was just over an hour and a half. He did not
bleed as much as most babies, and he would be ready for us to see him in about a half an hour. I cannot explain the relief
we felt.
When we went to the recovery room, I was not
fully ready for what we saw. He was as white as a ghost. His head had already rounded out and his little face looked so great.
He was very groggy and the incision is HORRIBLE. I am adding a new picture section called Recovery. This is not for the weak
stomached. He was in pain, and he only stopped crying when I would hold him and talk to him. We then went up to our room.
This room stinks. There are 3 beds and one nurse for all of us. It is loud and tight, but the staff is great.
I will be posting a lot more once we are home,
but I am just giving some basic updates for now.
Brock is doing well. He has slept most of the
day. Has nursed, and we are keeping his pain under control with morphine, tylenol and another narcotic. He did manage to pull
out his head drain, but so far the bleeding is controllable. Without that drain, he will swell more, but the swelling will
be so bad tomorrow anyway, that it wont matter.
I am hanging in there...I appreciate everyone
who has helped out, called, brought meals and gift baskets, etc. I LOVE you all.
I will post more later, but I want to have time
to add pictures, so I am going for now.
Good night,
Amber
8/31/05- Well, today was a really long day. We had Brock's Pre-op appointment this afternoon. First , he had to have his
blood drawn and lastly we had to meet with the nurse from the neurosurgeon's office.
Before Brock's blood draw, I had him laying down on the exam table and he was so adorable. He was smiling and cooing at
me. Then the three techs came in...
I had to hold Brock down while this gal (who I think had to have been NEW) fished around for his vein in his hand. After
trying for a few minutes (seemed like an eternity), she took it out and poked his vein on his other arm. There is nothing
worse than having a smiley baby go to blood curdling screams in a matter of seconds!
Today was hard, and I know that tomorrow and the days following are going to be harder. Thank you for your continued support.
We have to be at the hospital at 6am. Surgery is at 8am. I cannot nurse Brock after 4am, so please send me good thoughts
in that arena. It will be a very long drive to Children's if I have a screaming baby.
The surgical nurse will be updating us every hour, and I will post those updates here (internet willing).
Thank you all for everything!
Amber
8/26/05-
YEA!!!! We finally gave blood today. It was not nearly as bad as I thought it was going to be.
In fact, I think I did better than Ken! There is nothing like sitting in a chair and knowing that what is coming from you
is going to be going into your baby. All I can say is that I HOPE to God that Brock does not need the amount of blood that
Ken and I gave today.
As I was donating, another young couple sat beside me. I overheard that they had a surgery scheduled
for September 1st. I kindly asked what surgery they had that day...well, it was the same as ours. Their son, (who is 16 months
old) , has the second surgery of the day at 1 pm., with the other dr. in that practice. We will both be on the same
floor, etc. It will be kind of nice to know someone else going through the exact same thing on the exact same day. Hopefully
we do not have to share a room :-()
As we were leaving, we ran into Dr. Winston. He really is a crack up. Very dry and not much for
conversation, but hopefully he knows his stuff. The next time I see him, they will be working on my son's skull.
We are ready for this to be over. Ken and I both find ourselves "hiding" Brock's head and trying
to protect it. It must be instinct to want to shield your children from teasing, or bad looks, or embarrassment. Not that
anyone would do those things to a 2 1/2 month old, but you cannot help it.
Hope everyone has a great weekend! If you have never given blood...go out and donate. It is not
as bad as you think!
Amber
8/24/05-Well, after syching ourselves up to go give blood,
packing up both kids, and driving downtown...we needed an appointment and an order from the dr. So, we are hoping to get down
there at the end of the week. If anything, we are going to know that hospital better in preparation for next week.
I have been trying to prepare Alana for the surgery and
recovery, but how do you explain to a 2 year old the big "owie" and that she has to be really careful around the baby? I am
really nervous about this. Although Alana is really sweet to Brock...she always wants to "help" and hold him. I don't want
to say no, and make her sad or jealous, but I don't necessarily want to take any chances either. His soft spot will be about
an inch wide and 4 inches long...pretty big. I think I will be trying to protect it for the rest of his life.
Alana also starts school the week after labor day. It
is only 2 mornings a week for 3 hours. I think this will be really good for her and me. Her first day of school is the Wednesday
after labor day. I am going to try and take her and have someone watch Brock for a couple hours. I don't want her to feel
neglected, and I do not want to miss this milestone...I know it's only preschool, but still.
So, basically we have a busy couple weeks ahead of us
:-)
Talk to you all soon!
Amber
08/22/05-
This is just a quick post for those of you that know me! Ken and I are set to give
blood tomorrow night. I will finally get that over with! I will post tomorrow or the next day!
By the way...surgery is next week. It is SO scary to say NEXT week.
Amber
8/16/05
We had
a really busy day today. Alana had to say goodbye to her best friend Olivia who is moving to the Bay area, so she is not herself
today. It is amazing what a 2 year old can understand and that they can build such great friendships at such an early age.
We went to the local park for a little farewell party, ate lunch and got hot! Afterwards, we were off to the pediatrician's
office.
Today was Brock's 2 month well
baby visit. He weighed in at a whoping 13 lbs 13 oz, and he was 24 1/2 inches long (90th percentile for both). His head was
in the 97th percentile (but we knew that!). As always, I made Ken come with me so that I could leave the room for shots. I
am a big wimp when it comes to needles, which is why I have been putting off going to give blood. No more putting that on
the back burner, it needs to be done this week. There is nothing that would have made me want to give blood until I had children.
I am really hoping that this will help me get over my fear so that I can continue to give blood and also get on the bone marrow
registry. Everyone should do this...if you are not on the registry, visit www.scotthousehold.com and you will be convinced.
Anyway, back to his appointment...
as I heard him scream after his immunizations I almost wanted to cry, but I felt stronger than I ever did with Alana. Maybe
it is because I have already been there done that, or maybe it is because I know for a fact it will not be the worst
thing that will happen to him in his young life.
I am dreading the next couple
of weeks. I spoke to a gal whose son had the same surgery in April. She prepared me for the worst and helped me get over some
of my little fears. She also gave me some tips for the hospital...reserve a cot that first day, as he is in surgery. They
run out of them fast and the window seats are not comfortable :-). She also told me that they had to share a room. I really
hope this is not the case, but if the hospital is full, it will happen. As I think about that logistical fact, I cannot
help but also think about how sad that is...that there are that many sick children. At least I know (deep down)
that we will be leaving the hospital with Brock, some of these parents do not know this.
I have been touched by some wonderful
people. A couple friends and co-workers of ours have graciously donated vacation time to me for Brock's surgery.
I also was really touched today
by my mom's club. These ladies have really been there for me. Evelyn helped me make a beautiful birth announcement for
Brock and donated a gift of hers to me for some meals for the freezer, and countless others brought Ken and I meals after
we had Brock. Well, now I find out that there has been a huge response to bringing us meals while we are at the hospital,
to Ken and Alana while I am in the hospital, and the weeks following the hospital. WOW. When you hear that so many people,
with lots going on in their own lives, are willing to go out of their way for you and your family, it makes you really thankful
and feel really loved.
I have always been somewhat of
a loner, not really fitting in anywhere. Now I have come to realize who my true friends are and that I can belong to a "group",
it just took motherhood to make that a reality. These women and a few of my close friends know what I must be feeling, because
they can imagine if it was their child in Brock's position.
My mom and I were having this
converstaion the other night. We fight our parents when we are growing up, but as soon as you become a parent, you finally
realize why they worried about you. She told me it will never stop...that you always worry about your children. How scary
is that? I will be in a state of worry for the rest of my life. Thank you mom and dad for always worrying about us and
for now taking on some of the worry for our children. We are very lucky to have you all.
I know that the next few weeks will be brutal, but I also have realized what a great support system we have around us.
Thank you to everyone who has
made this experience a little easier. I feel really lucky to call you friends and my family.
Love, Amber
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