November 21, 2013

Jackson's Grand Entrance - Part Two

Continued from my last post....



As Hubby and I walked behind the nurse who was wheeling our 16-hour old baby boy to radiology, I just kept thinking to myself, This is not happening. Please oh please, not again.

Then as an afterthought, This walking thing really hurts. 

But ever since the concerns about his head had been brought to our attention, it was hard not to notice the distinct similarities because his head shape and how Alayna's head had been.

Sure, from the front our little guy's face and head look normal. But the rest of his skull was very football shaped with no soft spot on top. It is quite noticeable from the back and especially when you feel it.

It was hard to be hopeful that it was nothing, but hope I did.

We have been told craniosynostosis is not genetic or hereditary so of all the things that I imagined could go wrong, having another cranio baby never even crossed my mind.

Not once.

Once back from radiology, we waited for the results.

And waited.

And waited.

Finally, Hubby went home that evening to get the kids so they could come visit their new baby brother in the hospital.


I was sitting there, in the hospital bed, waiting for them to come back when the pediatrician showed up to give me the CT scan results.

I didn't want to know.

Especially not until Hubby got back.

I wanted to pretend this wasn't happening.

To just wish it away.

So I quickly jumped in and told the pediatrician that my husband wanted to be here and talk to him as well, and that he would be here any minute.

He said okay, but then proceeded to inform me that it appears our little man does indeed have sagittal crainiosynotosis.

Even though I think deep down I expected it, I still felt totally blind-sided and unprepared.

I wasn't given any time to digest the news however, because at that precise moment, an enormous ruckus arose from the hallway.

I could hear my kids through the closed door and down the hall.

Oh dear.

This was going to be interesting.

Perhaps I should have ordered body armor for our little man.

Indeed, it seemed the local zoo had arrived at the hospital. Next thing I knew, kids were spilling in.


And they were sure excited.

And hyper.

Very, very hyper.

The little guy wasn't quite sure what to make of all the ruckus.


After being reprimanded (lovingly of course), the boys were in no mood to cooperate for a family picture.

Out of the fifteen or so shots my mom took, these were about as good as they got.



We're all about realism here.


It was kind of funny actually that everyone showed up at the same time. My in-laws had arrived not long after Hubby left, then when he came back with the kids and my mom, my cousins showed up at the same time.

They, however, came bearing a large and tasty gift.


I have no hope of losing all this excess baby fat that is severely chunking up my face.

None at all.

I love it though. I almost don't want to eat it!

Almost....

In fact, every new nurse who came into my room spotted it instantly.

Must be that chocolate-o-meter that is naturally instilled in every woman. It was like they all had a homing device.

They always asked if it was real and I felt the need to be prepared to leap from the bed in case one of them had an inclination to make off with it.

I may have just had a baby, but my chocolate-protecting ninja skills were still in tact.



Anyway, once everything calmed down and everyone left, I was again alone with my precious baby.

And I cried.

I don't want to do cranio surgery again.



Hubby and I were still going back and forth on names at this point. I had wanted Joshua since I found out we were having a boy. So I was having a hard time letting it go. But I had to admit, Jackson seemed to fit him perfectly.

And I did like it.

So I finally gave the green light to put Jackson down on the birth certificate as we were getting ready to leave the hospital.



My two cranio babies.


As the news has spread that Jackson will need surgery, a few have responded with, "Well, at least you've done it before so you know what to expect, so that's good!"

I can only bite my tongue.

Yes, we know what to expect, and I think that that does offer comfort to a lot of people. But for me personally, that only makes it so much worse.

Many times when I look at him, I can't help but imagine him covered in scars, bandages, tubes, and IV lines.

When I nuzzle his fluffy hair I wonder if they'll have to shave it all off.

I imagine him in the pain and discomfort I remember Alayna having and it breaks my heart.

I HATE knowing what to expect.


I am grateful it's not life-threatening and I do know there are far, far worse things. Believe me, Primary Children's has a way of humbling you. And I am grateful that there is technology and skilled surgeons that will take of my baby.

But it still down-right sucks.


There is a chance his surgery will be different than the one Alayna had. If they do it before four months old they can so a far less invasive form of surgery, but he would have to wear a helmet for a while.

But until we hear back from the surgeon at Primary Children's we won't know what our options are.

I promise to try and keep my blog updated as we go along.

In the meantime, we would appreciate any prayers on behalf of our sweet little Jackson.


Love him.


You can read about Alayna's surgery HERE.

29 super cool people speak:

Brenick said...

So, theres no possible way that he might be able to just wear a helmet? sorry, i dont know anything about cranio, but my son had to wear a helmet because of his misshapen head.

Sorry, thats awful. Good luck with it all!!

Serene is my name, not my life! said...

No. The top two bone plates on his head are completely fused.

This was the best explanation I had with Alayna: http://serenedesigns.blogspot.com/2009/08/more-on-alayna.html

If the bones are not separated,, as his brain grows the skull can't move with it and will cause his head to only grow to the front and back, but not the sides. This would eventually put pressure on his brain.

Heidi D said...

I will be praying for your gorgeous new baby boy . From my own experience with health issues & procedures I found it a bit scarier thinking about a procedure when I have it done a second time as I remember exactly what will happen. I will also be praying for comfort for you as you & your family go through this with him.

tomiannie said...

Aw, what a little sweetie. That is so much to deal with when you have a tiny baby and you've just been pregnant and given birth and you have a passel of other kids and a husband to care for. I think you need two of those chocolate bars...

I know just what you mean about Primary Childrens humbling you. We've been there quite a bit with our Josh's health issues, but when you see some of those little ones and their parents, it is hard to get too deep into your own pity party.

But that doesn't mean it doesn't suck for you guys or that you don't get to feel scared and worried and anxious!

I'll be praying for your little guy!

ldsjaneite said...

You know. My junior high was Jackson Junior. Our mascot? A general. Because, as I'm sure you know, there is a rather famous General Jackson in our American history. Which means he is going to be one tough (and adorable) little nugget of awesomeness. You will make it through because your family is one of the strongest in faith I have ever known, and you have such a way of having such positive outlooks on things. I know this time will be hard, possibly even harder than before. But I have faith in your faith. And I'll keep praying that that faith continues to increase and be strengthened. You are one of my heroes, I hope you know! And I love ya!

Sue said...

Shoot. It's no fun having to look forward to surgery, especially one that make a sweet little baby sad and sore. And I do remember how scary it was the first time.

Still, you are right. At least there is surgery available that fixes the problem, and one day, it will be taken care of. In the meantime, you have a beautiful boy! And I will keep him in my prayers.

I love the name Jackson.

=)

Tristan said...

I'm so sorry. I don't have a child with that but I do have a child with medical needs that have put him through 10 surgeries so far and he's not 2. Most of his have been brain surgeries and even knowing what is happening it is still scary! Praying for peace for you guys, wise doctors, and wonderful healing. WHile this is all a surprise to you right now it isn't a surprise to Heavenly Father. (((HUGS)) That doesn't make it any easier to go through.

PS> Eat some chocolate for me!

Lesley Thalman said...

I found your blog through a post my friend sent me! I have a little boy named Jackson as well (almost 18 months) who was born with Metopic Cranio. Seriously, not fun (among the many other major procedures he has had). I wish you love and strength. So great to see your beautiful little girl has grown up and you can't tell anything was even different about her head! Here is my blog about our surgery

http://lesleyscottthalman.blogspot.com/2013/02/metopic-craniosynostosis.html

Raelyn said...

Serene....
What an emotionally-stirring post, Friend. You really, really, really need that chocolate!! I have another Kindred Spirit "Cranio" Buddy. Hello, Jackson!! He is--like Alayna--Beautifully Unique. Fearfully and wonderfully made. I love the picture of Alayna holding Jackson!! They shall have a precious, intricate, lifelong sibling connection, your two "Cranio" babies. Like "twins". I can feel it!! ;)
Yes, you have already experienced this neurological birth defect. But nobody, nobody, nobody would ever want to do it again. Knowing what to expect truly does make matters worse. And, really? How can you even know what to expect? There are still countless uncertainties which lurk regarding Jackson's future. And handing your baby over to some neurosurgeon? It never becomes easy. I get it, Friend. More than I probably should. I can sense your feelings/emotions. Craniosynostosis--plus needing twain separate skull operations--really impacted my Mom. Example? She checked my new baby niece for a soft spot!! ;)
Welcome to the world, little Kindred Spirit "Cranio" Buddy!! Welcome to the world. ;)
Sorry. Long comment!! ;-}
--Raelyn
PS. I am off to post about Jackson on my main Blog, Beautifully Unique, now!! ;)

Heather (wife, mom) said...

Such a cute little fella. Bad luck, but thankfully it's something they know how to fix. Still scary though- sorry. Congrats on not being pregnant anymore and on that huge Hershey's bar.

Jocelyn Christensen said...

Ha ha, that candy bar is fantastic. Hey hang in there. You know how to do this...and you'll (and he'll ) do great. XOO

J said...

Yes people say stupid things in an effort to be comforting. When my 17 year old brother died of a brain tumor, things like "at least you knew he was going to die" were said. I think we look at other peoples struggles with logic, while not appreciating we all are emotional beings, not purely logical.
I hope the best for you and your family. You have a beautiful boy! Yes, you do good work :)
BTW you are not allowed to rag on yourself for weight! I am 6 months pregnant with my 6th and I am the only one allowed to complain about weight since I have another 3 months of gaining ahead of me, haha. Enjoy the chocolate! You've lost the weight 5 times before, you'll do it again! At least that's what I'm telling myself...
Joy

J said...

p.s - I just looked through your pictures again, and you look great. What are you talking about girl?!

balloongal said...

Definitely praying for you.
5 pound chocolate bar? I didn't know they made them that big.

Shaylee Ann said...

My prayers are with you, Sweet Serene. You are amazing. Your beautiful baby boy is so blessed to have you as his mother. Hang in there. I love you. [HUG]

Raelyn said...

Serene....
I just posted on my Blog about Jackson!! ;)
You know what? That bottom picture of him almost looks as though he is thinking this. "Cranio-what? Don't worry, Mama, I can handle this!!". ;)
--Hugs and prayers!!--
--Raelyn

Heather Nicole said...

I am praying for peace for you and dad and for knowledge and skill for the doctors, but most of all I am praying for little Jackson. He is so blessed to have parents who love and care about him so much. I am sorry sometimes that love and care comes with anxiety, fear and heartache on your part.
That being said, this does suck! And I give you permission to say/think that as much as you want!

Emily said...

i'm so so sorry you have to go through this again. i'm thinking of you and praying for you all to be able to get through this. he sure is a darling little guy though!

Jenna said...

Serene, we love you and are praying for your family!

Lara said...

First of all, Jackson is a gorgeous baby! Congratulations!

I am so sorry you are going to have to do this again. I have learned a lot about this condition from reading your blog and Stacy's. `

"Yes, we know what to expect, but that only makes it so much worse." Really hit me hard when you said this. I'm keeping you in my prayers!

Anonymous said...

Yeah, Serene, your pictures in the hospital? You look a bajillion times better than I did with my "5'3' and 200 lbs" bloated face. And that chocolate bar? Awesome.

And the baby! He's adorable. Congratulations!

And the surgery? big hug from me.

Emily Coyne

Brittney said...

Can't help but comment and say Jackson is AAAAAAAAAdorable, but which one of your babies hasn't been? Very sad to hear the bad news. I will pray for you to be able to keep the worry from being debilitating. Hugs to you!

Katherine said...

I'm so sorry. I'm crying at my computer right now for you. I'm so sorry.

Thank you for saying "Yes, we know what to expect, but that only makes it so much worse." I've never considered that perspective, and hopefully I can be more sensitive in the future.

Raelyn said...

Serene....
I just wanted to send you a quick {Yeah, right!! Brevity is "not my style"!!} saying that you are still in my thoughts and prayers, Friend. Every single day. Here's to hoping that Heavenly Father wraps you in the comfort of His Arms. I am praying for your witty sense of humor to remain intact.... Because laughter is the very best medicine. And may your family's bond grow stronger during this time of loving precious Jackson. ;)
Happy Thanksgiving, Friend!! ;)
--Raelyn

Raelyn said...

I just wanted to send you a quick COMMENT saying that you are still in my thoughts and prayers!! Sheesh, did I not proof-read this?!

the fowlers said...

You just keep making them cuter and cuter. What a beautiful, happy bunch of kids.
I'm so sorry you have to go through this again. I would be in tears just knowing that all that beautiful hair would be gone (my babies are so, so bald).
You definitely have a lot of people sending prayers. I hope technology has advanced even in the past couple of years and that everything goes as quickly and easily as it possibly can.
I think you're a candidate for free chocolate for life. :)

Valerie said...

He is really adorable! I'm glad he has arrived, but so sorry to hear of the uncertainties right now. I cannot imagine how difficult that must be for you to go through again. You are in my prayers!

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Marcie said...

I read this post awhile ago but was nursing and didn't have my hands free to post. But I think of you often and still want to comment, although you may not need the support as much now. I loved this post and wanted to tell you it's ok to mourn the imperfections of a newborn. I haven't experienced what you have, but I have had other imperfections to mourn or be sad about. Our sixth baby was stillborn and that was a whole mourning experience of it's own. When our 7th was born I was ecstatic to have a breathing baby in my arms again. I appreciated newborns much more after having experienced a loss. But right away I noticed her head was shaped funny. She had torticollis, which is nothing like cranio but I still did months of physical therapy with her and when I laid her next to other babies for a friend picture I was sad that my baby was so different. Her head always tilted to one side and all the other babies were beautiful and strong. Then #8 was born and although healthy, she was breech which made her head shape abnormal. I hate to say this, but I didn't think she was very pretty. She was extremely bald and had a funny shaped head. Those 3 baby girls in a row with their imperfections made me really appreciate our latest addition, #9 and how beautiful he was. I think if all of my babies were beautiful and perfect I would take it for granted, but this made me appreciate more a truly handsome little guy. I hope you understand what I'm trying to say. I may not be using the right words because my brain is kinda dead right now. It's ok to be sad and upset and everything else you are feeling (or were feeling at the time you wrote this.) Thanks for sharing all your feelings and all the details of Jackson's surgery. We are praying for you!! Samuel is 9 weeks old and I can't imagine handing him over to a surgeon. It takes a strong, faithful mom to do that. You are amazing. Again, our prayers are with you. Love, the Holladays

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