Connor OSU helmet

Well, Connor is finally starting to get used to his helmet. I think he was excited about the week he had a fever, as he couldn't wear it, but it's back on again.

Here are some pics of his new OSU helmet! Daddy spent hours covering this thing with white Vinyl. He did a great job!

And great news! All the steristrips have come off, and the incision looks FANTASTIC!

Appointment with Helmet Man

Well, we had an appointment with the helmet guy today, and Connor's head has improved by 10%. He had to measure twice for each measurement, because he couldn't believe how fast it changed. He told me that it didn't mean that he'd be out of the helmet sooner, but he might just reach the desired head shape way sooner, which is fantastic!

He adjusted the helmet, and it fits just like it did a week ago. Snug as a bug in a rug. (Well, besides the fact that he still hates sleeping in it) BUT, he did sleep through the night last night. I am hoping it wasn't a fluke.

HOWEVER, Connor just got a fever on the way home, so he can't wear it, as it would trap in the heat too much. He's loving every minute of it - I think he wants a fever every day. :) But if it continues tomorrow, we're taking him into the doc, since they are closed 3 days around Christmas.

Helmet sleepin

Well, we are to the 23 hours on/1 hour off schedule now, and let me tell ya - Connor does NOT like sleeping in his helmet at all (or nursing for that matter). He just thrashes his head around from left to right and back to left again. I would imagine it would be hard to get comfortable in.

He's been waking up 2-3 times at night due to this, and it is pretty painful on the mama. I'm pretty sleep deprived at times, but luckily, my awesome husband gets up with the twins at 6 am (or whenever they decide to wake up), so I can sleep in until Connor gets up again. So, I can typically sleep until 7 or 8 am.

New prayer is: Pray that Connor starts getting used to his helmet, and that I can figure out how to comfort him better with the helmet on, and that he is able to start sleeping better.

1 week post op

Well, it is day 3 of the helmet, and it is like nothing ever happened. Of course, we are all still getting used to the helmet. It's heavier than I anticipated, and sometimes I'm afraid it's going to hurt his neck or something.

And Mama always gets the blunt end of a helmet. As when he's tired, he throws his head into my neck, which now hits my head, and when he's hungry, well, you get the idea. :)

But as for Connor, he seems fine in it. He's slept 3 naps in it today, and it is going very well. No fussing or anything. Tonight is the first night sleeping in the helmet.

I'd say at this point, he's pretty much 100% recouperated. Thank you Jesus!

New Helmet

Well, we got measured for the helmet yesterday, and went again to San Antonio to pick it up. Connor doesn't seem to care for it too much, but he'll get used to it, I guess.

We have to do 1 hour on, 1 hour off for the first day, 2 on/1 off 2nd day, 4 on/1 off 3rd day, 8 on/1 off, 4th day, and 23 on/1 off on the 5th day. After that, we only take it off 1 hour a day for bath and helmet cleaning.

We have plans to decorate it like an OSU football helmet after the 22nd.

We're off to San Antonio today again to see the doctor. But Connor is doing absolutely fabulous! The incisions look GREAT, and no fever or fussyness. As of yesterday, we are completely off the tylenol and motrin (except when his teeth are bugging him).

Still getting used to it. He tugs a lot at the sides.

Just chillin. I guess if I HAVE to wear this, I might as well be stylin!

Glory to God

As I hear the soft snoring of my baby boy, I can't help but thank God every day!

I am so glad the God directed us in the path that he did. I'm so thankful to him for allowing us the opportunity to do the endoscopic surgery instead of the big CVR surgery. Seeing the pictures of kids after the big surgery really scared me, and I did not want my baby to be in that pain, or lose that much blood. I'm so glad that we live so close to Dr. Jimenez, the man who pioneered the endoscopic surgery, because really, with my baby and his head, nothing but the best will do.

Connor only lost 2 teaspoons of blood, and only had swelling really for one day. By day 3 post op, it is completely gone.

The only negatives are only mere inconveniences, and don't even matter. The drive back and forth to San Antonio every month - we're going to make the best of it, and make it fun for the boys and do some sightseeing. The helmet - Go POKES, we're going to make an OSU football helmet.

And who knows, God may have put this in our lives for a reason! I don't know what it is yet, but HE DOES! Nothing is an accident, and I thank God every day for my little man - well, all of the little men in my life (and my husband too - he's been awesome throughout this).

Post Op - Day 3

Thanks everyone for your prayers today! Connor is so happy and playful this morning. It is almost like nothing ever happened! We're so blessed!

Swelling is almost completely gone and no fever (with the tylenol and motrin). We are going to starting cutting out some of the pain meds to see how he tolerates it, and to make sure the fever isn't hiding behind the pain meds.

He's also cutting 3 more teeth, so he may have to have some of the pain meds. Funny isn't it? That his teething may require pain meds, but we're cutting it out from the surgery?

We're off to San Antonio tomorrow to get a laser head scan to get fitted for his helmet. My dad's coming to watch the boys.

Before and After

Here are some before and after pics.

Before (if you notice - head is long and skinny, forhead sticks out a lot, back is pointy, and temples are in a lot):

After (notice forhead looks completely normal, and back of head is not as pointy, and head is much more rounded - temples even with head):

Day 3 after the swelling has gone down:

2 months post-0p - head looks awesome!!!

Post Op - Day 2

Well, last night, we encountered a fever. It wasn't fun for the mommy at all. Connor was gagging on his pain medicine, and we were given the green light by the hospital and doc to NOT wake him up if he was sleeping. Well, when he did wake up, he had a fever since his meds had worn off. It wasn't fun at all.

We called the oncall doctor (at 11pm) and he said that fevers are common, as long as they aren't accompanied by any swelling, redness, drainage, etc. So, he doesn't have any of that, and plus he's eating really well. So, the plan is to keep the fever under wraps and continue to monitor him. He hasn't had a fever since early this morning, so I think it's getting better, and plus we are keeping up on his pain meds.

The swelling is also a lot better today. We kept him propped up last night, and made sure his head was centered, so that the swelling didn't settle on one side of his face. They called it "dependent edema", whichever side he's laying on, that's the side the swelling goes to.

So, we need prayer for:

• No infection - we do NOT want any infection at all! It doesn't appear that it is the case, but want to keep it that way!
• Pray for fever go to away!
• Pray for the swelling to go away. It's hard on the mama to see her baby all swollen. Although the swelling doesn't seem to bother him.
• Pray for no pain - they told us to try to take out doses of the pain meds after a couple of days. So, pray when we do that, he's fine, and doesn't need it anyways.
• Pray for head to heal perfectly. It's already looking good, but pray that it heals perfect.

Post Op - Day 1

Well, last night went ok. Had to end up giving him morphine last night at 9pm as he was really fussy. But after that, but Cman and I got a good 5 hours of sleep. Of course, the nurses were coming in every 3 hours to check vitals, give pain meds, etc. I think I slept through 2 of those checks. :)

Dr. Jimenez came by and saw him. He said he was doing well. We told him he's been a little cranky. Of course, Dr. smarty pants says - "Well, he DID get a piece of bone removed from his head today. You'd be fussy too!". :). OK, good point.

This morning, there's a bit more swelling, but they said that is expected, since he slept on that side last night. One of his eyes is almost swollen shut, but he's been in good spirits today. We should be outta here by this afternoon or so.. Really looking forward to that! I'm just ready to be home!

Also, changing the name of the blog to "Craney Days", as this is what the PICU nurses call the day that the cranectomies are done at this hospital, as all the "craney" babies are keeping them on their toes. :)

This is how he looked first thing in the morning. A little swollen.

Mamu finally got to hold him. He's in good spirits today.

Loving my daddy.

Surgery

Connor did absolutely amazing in surgery today!

While we were prepping for surgery, we talked to all the anesthesiologists (there were 3 - 2 residents, and one head guy). The residents were very nice. We found out this is a teaching college, so it was neat to see all the "Young blood" doctors walking around. They were all raving about Dr. Jimenez and how he's revolutionized this surgery.

I heard the hardest part was when they took him away to surgery. Well, since we had been chatting with everyone, they were the ones that took him back. It actually wasn't that bad at all. God put such a peace around me that I wasn't agitated at all. I was actually kind of excited that his head would be fixed, and knew he was in good hands (God's - of course, and the doctors, too).

He was in surgery for 47 minutes, which is 2 minutes over the doctor's average time. So competitive - I Love it! Connor only lost like 2 teaspoons of blood. This is the amazing part. He did not need a blood transfusion at all with that little of blood loss. With the CVR method (Big surgery), there is like a 100% chance of a blood transfusion, so I was really excited about that.

We were taken immediately to the PICU, and able to see him in the next 30 minutes. OK, THIS Was the hardest part - seeing him for the first time. His head was a little swollen, and he was crying. I wasn't sure what to do. He had so many tubes coming out of him, that I didn't know how to hold him, or comfort him without hurting him. But he seemed so calmed by my presence there. BUT, even though he was kind of swollen, it was NOWHERE near like any of the pictures I had seen of post-op babies from the "big surgery". His eyes were not swollen shut or black, and his head wasn't a huge balloon. He definitely looked like my little Connor. But just then, I looked at his head. Oh, goodness! I wasn't prepared for the DRASTIC Difference. His forehead released, and the back of his head looked normal. He now very much looks like Hunter. Wow! I'm so happy! If we get this result from the surgery, imagine how drastic the difference will be after helmet therapy.

After the morphine given in surgery, he didn't have any more morphine, and has graduated to tylenol and motrin. He's doing great! Hardly crying now. And I just fed him his first feeding. He's doing fantastic. We should be discharged tomorrow.

THanks for your prayers. See pics below.

This was him when we first saw him right after surgery.

I FINALLY Got to hold him. I was so scared I Was going to hurt him. This was right before he had a huge blowout that got all over me.

Side shot. Look at how great his forehead and back of head look. Totally relaxed since the bone is removed now.

Top of head. ALMOST looks normal (Minus some swelling).

Just a few hours after surgery, and already laughing with daddy and being silly.

Day before Surgery

Hi guys.. Well we arrived in San Antonio on Wednesday, and made it up to the neurosurgery clinic. It was one thing after the other. We met with the nurse, the research nurse, took vitals, met with the helmet guy, and finally met with doctor Jimenez.

He is a really nice man. He seemed a little upset that our scans were misread, and said even a blind man should be able to tell his diagnosis. He also seemed a little irritated about Dell children's bashing the endoscopic method. I shared his frustration, and told him that's why I was glad we found him.

We were given a strict feeding schedule to prep for surgery the next day at 7:30 am. We had to show up at 5:30 am. It's gonna be a long day!

Surgery coming up

Well, we just got a call today.

Our insurance HAS APPROVED everything! Praise Jesus!

And the surgery is scheduled for 7:30 or 8 am on Thursday. So, everyone be praying first thing in the morning. We have to be at the hospital at 5:30 am.

Joy

It was so ironic that Keith spoke about Joy today. "Joy is a fruit that we enjoy when we choose to trust God no matter our circumstances". In our house, that is what we've been talking about for the last month.

When we first dedicated Connor to God, we noticed the extreme JOY he always has, and how he seems to spread that contagiously. And we pray that will continue to his adulthood, and he brings people to Jesus as a result.

And now this thing with Connor's head. We continue to praise God for everything he is and everything he has done. And for making this as stressfree as possible. And even though these are NOT the circumstances we would have chosen, we choose to trust God with the outcome of this, and trust him to be with Connor, and to be with us. So, no matter what, God is here with us.

And for this Christmas season, we are so THANKFUL that God brought us Connor this year, and that he gave us an option to make this as easy as possible for him with the endoscopic approach. And we are SO excited to tell the twins about Jesus this year, as they are finally able to understand, and we'll tell them how God will be with Connor and the boo boo on his head. And it'll be a bit of a bummer to miss out on celebrating with family this year, but we are going to spend a quiet day celebrating the one true Savior, and thankful for the family that he's given us.

So, at our house, we are thanking God right now for being with us no matter our circumstances, as we are EXCITED about Christmas, and have so much JOY at what God has given us. JOY is something that no one can take away from you, since you have it even when life isn't perfect..

THANKS JESUS!

Also, we appreciate everyone praying for us at church this Sunday! It really meant a lot to us (although we were a little shocked about being called up). :) But we are continually amazed by our wonderful church family, and everyone's sincere hearts and generosity! We love you guys!