Henry's journey has begun - 9/2/08

[jreimer]

Hmm... I don't really know where to start. We're at the beginning. Henry went in for his 4 month checkup - and his head circumference spike up above the 97% percentile - 18cm. So the doctor here recommended we head to Iowa City to the Children's Hospital and get a CT Scan done.... we waited about a week to get an appointment... and got scheduled for 9/2 to just have Xrays done. Meanwhile, I'm researching as much as possible, and all I could find was about hydrocephaly related to large heads. The doc here didn't really think anything was wrong, as he's doing great in all other areas... so we were worrying, but not really at the same time... so yesterday, we had our appointment... and it turns out his top suture is closed - I believe its the saggital. I didn't really get to focus on what the surgeon was saying yesterday, because Henry was getting kinda fussy - and I was in shock, to knowing he'd need surgery, and then it wasn't even what I had thought! But, my husband took it all in and he recognized the word sagital after I did some research.

So, today, we decided to go ahead with the surgery and called to schedule it. Its going to be on the 22nd of September... our pre-op will be next week on Thursday - to get out CT Scan and test our blood and all that lovely paper work...

I'm trying to research as much as possible... I'm not really sure why. Part of me wants to not know all the gorry details and just go with it when it happens... but another part wants to know every little detail. I think I kinda realized when talking to my husband tonight that I actually want to keep it matter of factly instead of emotionally so I get through it easier.

I don't think we have a very bad case of it... but maybe so. I'm not really sure. Here's a pic of Henry at 3 months... I'll see if I can find any side ones as that's where I can tell his head is a little off...
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567

Here's a side view from about 2.5 months...I can't find any more recent one:
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I'm not really sure what to expect. Maybe you guys can answer my questions:
1) is he going to look normal later? Will anyone be able to tell?
2) how long and how often do you use the helmet? (all day...??)
3) is there risk of mental retardation?
4) how do you know if its a hereditary case?
5) did your little one have troubles with feeding before the surgery? (my guy's been a bear to get to eat like he used to for the last 2 weeks!)
6) are they in pain before they have the surgery? (lately when he's eating, he's been rubbing his head... only when he has a bottle though...??)

I guess that's about it. Right now we have only told his grandparents... tomorrow is the day to tell everyone what's going on.. so that's going to be an emotional day.

I'm so glad I found this forum and so glad to see there are positive outcomes! I love the internet... haha!

[Wyatt's Mom]

First off, congratulations on your beautiful son!! He is such a cutie! there are TONS of sagittal moms on here who can give you more details but I'll answer what I know.

1) Will he look normal? YES!!! He will have a scar but it should fade and his hair will cover it.
2) Will he need a helmet? It depends on the type of surgery you are doing. If you are doing endoscopic then yes, he will need a helmet. I'm not sure how long. If you do the CVR/FOA (cranial vault reconstruction/Frontal Orbital Advancement) then they do all the shaping etc. at that time and no helmet is necessary.
3) Is there a risk of retardation? As far as I know, No. The surgeons are really good at what they do and there is a VERY low risk to the actual brain. Am I right ladies?
4) Is it hereditary? Usually single suture cranio isn't related to anything like a syndrome or genetics.
5) Feeding problems... My son had acid reflux.
6) Are they in pain(question mark) As far as I know, unless there is ICP (intercranial pressure) they shouldn`t be in pain. Maybe he is rubbing his head for comfort(question mark)
My son does that when he gets his bottle, it`s like his comfort thing while he is drinking.

Good luck tomorrow. It will probably be a really emotional day but you will get through it. We are all here to support you so please ask any questions you need. I`m glad you found us!!!

EDIT: For some reason my question mark is not working. Sorry for the crappy typing!!!!

[Jenny]

Lol, sarah..

I just wanted to add to sarah's post, she answered them all pretty well, but with the CVR they can also have a helmet, my daughter did. They stay in them 23 hours a day, usually for about 6 months or so.. depends on the dr.

Your son is a cutie, and i'm sorry you've had to join us, but happy you found us! We have some tremendous support around here!

[melsch]

HI! Welcome to CK! Looks like the ladies have answered all your questions, or at least the ones you have for now :) I'm glad you found us, this site is a wonderful place for answers and support! I'm glad you don't have to wait long as the waiting is one of the most difficult parts! You'll see, your little man will do amazingly well!

BTW- What a cutie pie!

[dannlark]

What a cutie patootie!!! Welcome to CK!!!!! I'm so glad you found us. You've come to the right place for support and a wealth of information. The ladies helped you with all your questions, but I just wanted to say that they do so well (my Ian is 1 week out of surgery and is already back to normal). It's a scary place to be, but these kids will amaze you with their strength and recovery. Stay strong Mommy, your little man needs you to. We're here to help and support you when you need it.

[lil_lucky_j]

WELCOME!!! My son also has sagital, he is almost 2 yrs old. I was so scared and worried when i found out about it, Codys surgery is in 10 days and it seems like the sooner it gets the more worried i am. But there is alot of support and wonderful people on this site. Im very thankful to have found it!
Things will be ok, just give it time.
Your son is a cutie!
-Jessica Brown

[Henry'sMomGina]

I have a Henry too! You can view my albums to compare heads. I was in shock about the whole thing too and only learned about it on July 31--his surgery was August 14. We just got the helmet yesterday.

Your Henry is a cutie.

[Henry'sMomGina]

Oh, in my signature picture Henry is on the beach 2 weeks after surgery.

[beccad]

Looks like your questions have been answered. So I will just say hello and welcome to CK. I'm glad you found our little family here and I hope that you feel welcomed. Your son is a cutie pie. I'll be praying for you as you go through this journey.

[mattricia]

Hi and welcome to CK. Your Henry is adorable! (It's so cool...in the last couple of months, there have been two new Henrys and a new Jackson here... I'm so not used to there being any other little Henry's around.) I didn't have time to read/answer all your questions right now, but i wanted to post so you could see Jack's pre/post op pics in my siggy.

Hang in there. We're here for you!

[Everest]

Hi and congratulations on your son! My son also was rubbing his head between 4 and 7 months. Of course when we got to know that he had saggital cranio we thought it could be related. Although the doctors always said it had nothing to do, they made an appointment to check for ICP (through the eye nerve). Everything was ok, and at the moment (he is 10mo) there is no rubbing anymore. I guess we just get extra-vigilant, extra carefull and extra worried with cranio. Its normal, but just think that in a few weeks it will be over. Its good that u dont have to wait that long for the surgery.

[jreimer]

Yeah - I'm not used to Henry's either - lol - people around here seem to either love it, or go "henry... hmm... okay..." - its kinda funny.

This place has been a godsend! I've learned so much and so quickly! Its great to have you guys around - I'll be in touch after our appt next week to tell you how the CT Scan goes and the blood tests.... (ugh).

Thanks for the words of encouragement and answering my questions!! You've all been so helpful!

[jreimer]

Its so weird - after telling family yesterday... I found out an old high school classmate of mine's little boy has gone through this! What a small world. Its weird how you don't find these kind of things out until they happen to you...

[Gavinsmomann]

Henry Is So Cute. My Gavin Had Saggital Also And We Went To Iowa City And Seen Dr. Maneses. Is That Who You Are Seeing? Gavin Had The Strip Done. Is Was Done 1 Year Ago And He Is Doing So Good. Nobody Would Know Anything Was Wrong.

[jreimer]

Yeppers - we're seeing Dr. Maneses as well. That's so good to know everything went well - and its great knowing someone else around here!! Thank you!

[Melbourne Mummy]

Hi Jamie - that last photo of Henry in the orange top is my Hudson all over! The head shape is exactly the same. I've just replied to you in another thread to say we are going through a very similar journey, and Hudson is only one day younger than Henry! Good luck with everything x

[Trust HIS Heart]

Your little man is SO CUTE!!! I know what you mean by being in SHOCK-we just found out 2 weeks ago that our son has sagittal craniosynostosis as well. It is a late diagnosis. He is 11 months old and his surgery (CVR) is scheduled for Oct. 17. What kind of surgery is your son having? That is great you are having the surgery so soon!!!

[three.little.boys]

Hello and welcome!!! Theothers have given some great advice, so I just wanted to pop in and say HI!! Your son is a CUTIEPIE!!

[jreimer]

We're having a CVR - I guess our NS will not do it endoscopic - he says that sometimes it doesn't hold....??? Is there any truth to that? I haven't found anything regarding that....

[jreimer]

Henry had surgery this past week - and our hospital is very accommodating with CarePages - they're a website that you can post updates to family and friends to share and they can write nice comments and messages back. So - since I wasn't on HERE this past week, I'll post the updates that I wrote to the family.
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Recovering!

Posted Sep 22, 2008 5:47pm

First things first - Henry got through the surgery with flying colors!!

We got here bright and early this morning at 6am. He first got blood drawn - and he didn't enjoy that. They had to end up just pricking his foot a couple times and collect the blood as it came out.

By the time we got around to anesthesia, it was about nap time and Henry was getting tired. So I just sat and rocked him while we waited and he fell asleep on his own. Christopher and I handed him over to the pros to get his IVs and prep for surgery. MUCH harder to do than we had anticipated.

All the grandparents were here with us for support through the day. We waited in anticipation to hear from the surgeon for a couple of hours.

Around 11am - we got a call from the nurse that the surgery went great and they were stitching him up. What a relief.

At noon, we met with the surgeon - he was very pleased with how the surgery went. The CT Scan showed fluids around the brain (which from what the nurse had said in the email, I THOUGHT was normal), but it was excessive. They found that the vein that drains the fluid from the brain was pinched in the suture where it fused together too early. That only happens in about 10% of these cases. They released the vein and drained the fluids, and everything went great.

The surgeon said he could tell that his head was reshaping already, so we will definitely notice a difference by the time we leave. (I'll post pics!)
We were out of the recovery room by 1:00 and into the PICU for the night. We are being transfered to the 'temp' (due to construction) PICU later this evening with another fella that went through the same thing today. Then tomorrow, if all goes well, we'll be moved to a regular inpatient room.

Henry just drank a full bottle of formula a little bit ago, so that's a great step. He is a little swollen already. I can tell in his face, especially his lips - and also his hands and feet. Its going to get worse the next day or two and then will start to go down. He's only opened his eyes a few times so far... and for short times each. He's not really focusing on any one yet... we're looking forward to the first smile :)

I'll post some pics tomorrow and our room number when we get moved.

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PICU night

Posted Sep 23, 2008 10:56am

Last night after everyone left, Henry woke up and Christopher and I were so surprised, the swelling went down a lot, he looked pretty normal. But, that was only because they had just given him the meds to stop the swelling... We had a pretty good night last night. Henry slept pretty good, woke 3 times, I think, for a bottle (bummer... since the last 5 nights he's been sleeping the night finally) - He woke up a couple other times just a little fussy. The nurse last night was awesome, very on top of things and was very good with his meds.

This morning, Henry's been pretty alert. He's up for a good 1/2 hour to an hour at a time - bright eyes. We even got a couple smiles this morning! He's been pretty hard to entertain though since he can't really do too much. He loves standing, and with an IV in each foot... that makes that out of the question. So he gets to just lie there and watch things, which he doesn't put up with for too long and gets fussy pretty quick. We can hold him, although with all the wires, it makes it pretty difficult to do anything, but just sit as still as possible.

Here's a couple pics of yesterday after surgery:

http://farm4.static.flickr.com/3097/2882681078_1f8b30d6ec_m.jpg (http://www.flickr.com/photos/26847067@N02/2882681078/)
Right after surgery, still hasn't quite woken up yet...

http://farm4.static.flickr.com/3021/2881846805_3af0958c19_m.jpg (http://www.flickr.com/photos/26847067@N02/2881846805/)
In the PICU hooked up to all the wires...

The nurse, Lonnie, just stopped in as I'm writing this and said she's going to get the papers going so we can get transferred to the Neuro Unit soon! We have to wait for Surgeon Arnold to stop by, but then once he does, we should be able to move! YIPEE! Hopefully that will mean some less wires.
I'll post again once we get moved.
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Neuro Unit

Posted Sep 24, 2008 10:45am

We were moved upstairs to the Neuro Unit yesterday afternoon. We're now on Floor 3 in the 3JCP wing, Room 45. We're, unfortunately, sharing a room. However - its the same little boy that went through the same surgery as Henry on Monday. Its good (and bad) to see how another patient is doing...

Yesterday was a pretty rough day. Henry was pretty fussy all day. We kept him on Morphine and Tylenol pretty much as much as we could... That usually knocked him out - but only for short bits, so it was a lot of cat naps throughout the day. Mikey (our roommate) is a couple months older than Henry and is crawling and standing up in his crib. He seemed to be in a great mood yesterday, so it was kind of frustrating to see how well he seemed to be doing and how fussy Henry was.

Last night went pretty well though. Christopher and I each managed to get a few hours of good sleep. Between two babies' monitors beeping, their waking and crying, and nurses coming and going, we were excited to get that much. Henry only really woke once to eat at 2am. He woke a little fussy at 11, but went quickly back to sleep. He slept pretty good between 2 and 6... but kept fussing with his head bandage, so it kept me on my toes for a couple of hours.

He managed to work his bandage off his forehead last night and this morning it was pretty loose. When our nurse, Lonnie, did rounds this morning, she decided to change his bandage. So she took off the head turbin, and just put bandaids then over the stitches! So his head is showing now - and boy... his hairline is EXACTLY like Grandpa Carlson's! hehe - they shaved a lot more then just a line down the middle. The incision is also curved back and forth so that when it scars, the hair won't automatically part down that line. Its a MUCH longer incision than I imagined. It goes from just behind the hairline to almost down to the bottom of the hairline... so that was a little scary seeing.

I think the bandaids are much more comfy for Henry, except that now there isn't that extra padding to ease the pain - but at least its not itching him and bothering him that way.

So that was our first piece of good news - no more head turbin.

Next piece of WONDERFUL news - Dr. Menezes (Arnold) did rounds this morning and said Henry's swelling was about as good as it gets for the 3rd day - he hardly has ANY! He woke up this morning and the right side was pretty swollen because he laid on that side all night... but he could still open his eyes just fine. So, Arnold told us that we MAY be able to leave tomorrow afternoon already!!!!!!!!! We're SOOO excited to leave so early. Arnold said that's the earliest they let them go, but since there's no swelling and as long as his pain is under control with just Tylonel, we're good to go!

3rd piece of good news - we're off monitors!! And so is Mikey - so no beeping tonight!! We're also going to be off of IVs later today. They have one more injection of antibiotics to give at 4pm today, but after that - nothing! (Downside - the nurses like to leave the IVs in still, just in case....)

Since we're off the monitors and only need the IV at 4pm - we're gonna go for a stroll around the hospital today. That should cheer Henry up (since, if you live in Elkader you know that Henry and I go for walks about 3 times a day!).

Today, so far, we've been off Morphine since Henry's feeding early this morning at 2am... we've only done Tylenol. He seems to be okay. He's been kind of startly when he's napping, but other than that, we've gotten quite a few smiles already - and that makes Christopher and I smile.

Here are Henry's latest pics:

http://farm4.static.flickr.com/3268/2885403166_3fc77305ab_m.jpg (http://www.flickr.com/photos/26847067@N02/2885403166/)
Henry and Me yesterday (9/23) - with his head turbin and hat with Eeyore drawn on by one of the surgeons!

http://farm4.static.flickr.com/3276/2884567481_96957026de_m.jpg (http://www.flickr.com/photos/26847067@N02/2884567481/)
Henry happy today after the bandages came off

http://farm4.static.flickr.com/3237/2885403492_5c29b25cdb_m.jpg (http://www.flickr.com/photos/26847067@N02/2885403492/)
Henry's new bandages

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Heading for Home

Posted 1 day ago

Yay! We get to go home this afternoon!!!!! And so does roommie, Mikey! Great news!!!

Henry got fitted for his helmet this morning and we got it shortly after - it doesn't look too comfy, but I'm sure he'll get used to it soon enough. He only needs to wear it when he's up and about. It sounds like he'll have it for 6-8 weeks, but we have to confirm that with the doctor yet.

Getting Henry to bed last night was kind of rough - He got himself really worked up and spit up ALOT (I've never seen so much... but the nurse reassured me that it couldn't be more than an ounce... I don't know how.) - But once he calmed down, he was out. And I think he woulda been out for most of the night, but the nurse came in to take his vitals at midnight and woke him up (WHY is that necessary?!?) - She checked on him again at 4... but it seemed like the nurse for Mikey came in the middle of the checkups the whole night, so that kept waking us up - but other than that, it was a sound sleep - no beeps!

Henry's taking a nap right now, and once he wakes up, the nurse is going to take out the IVs (yipee!). Henry also needs to have an Xray done before we leave, so they can have that to compare to at his 12 week checkup - I'm interested to see the amount of bone they removed. Then, we just wait for the surgeon to stop by and give us our discharge papers and we're outta here!!

Henry's had a great morning so far - he's been so cheerful and happy! We just can't wait to be home in our own beds.
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Sorry this was kinda long, but that sums it all up in one place :)

[three.little.boys]

Oh Congrats on a great surgery. Henry is adorable and is looking excellent! Isn't it so geaat how fast they bounce back??? Welcome to the other side!

[Gavinsmomann]

So Glad Everything Went Smoothly. Wow No Swelling Or Little Is Awsome. He Looks Wonderful. So Happy.

[dannlark]

Welcome to the other side!!!!! I'm so glad it went so well and he's bouncing back just as to be expected! He's looking wonderful!!!! Try to get him back to his regular schedule asap as it will help with the transition. Way to be strong Mommy!!!! We're proud of you...

[Nicholas' Mom]

I'm so happy everything went well and that Henry is recovering so quickly. Our little ones really are amazing, aren't they? Henry looks wonderful! :-)

[jreimer]

Thank you all for your support. We're now 1 week post-op. Henry's doing good. Getting back to his old self. He's still frightened quite a bit - but getting better each day. I just can't wait for our 2 week visit to get the stitches out. I think he'll be completely back to normal then... no more bandages! :)