30 August 2008

Post Heavy Day!

So its my third post in an hour. I figure I should break these up a bit so you don't have to scroll too much. We have to get all the updates in since its a bit hard during the week.

We've got a bunch of photos to update on the web and should be able to get them up sometime this weekend. They're on the compy already, I jsut need to get them organized to post them up.

Also we're finally getting around to getting another batch of Thank you notes out. We've misplaced the big stack of ones we bought before he came in all the mess and haven't had a chance to sit down and start writing things. It's hard to start because we have some many people to thank. We want you all to know we are very thankful for all your help, we're just a bit slow in getting the direct news back to you!

Ice Ice Baby

So I was on the phone with my Mom and Dad today and my Dad threw out another nickname for the little guy..."Ice" I don't know if that'll make him to grow up to be one of those white boy wanna be gangsta rappers, but its another nickname to add to the stable.

I've been a bit fluey lately which worries Rachel because we don't want Isaiah sick before the surgery so I'm on super handwashing duty and not allowed to touch things that will directly go into his mouth. Unfortunately it does not completely absolve me of my late night feeding duties though, but Rachel was nice enough to let me skip one last night so I could get more sleep. Personally I think its more flu like symptoms because of the extreme lack of sleep I've had lately (moreso than usual, like 2-4 hrs a night until last night) so this holiday weekend is a good thing so I can try and catch some cat naps during the day. I'm taking zinc and vitamin C supplements to hopefully curb anything else that migh develop though.

The little guy is getting rather plump now. We're almost to the point that some of the 0-3month clothing is getting kinda tight on him because of his head and the fact he's eating like a piggie. It wont help matter much when he comes home with his head bandaged up and the helmet possibility hasn't been completely ruled out yet so we'll see. Other than that he's still his crabby self during the day, but doing fine.

Hear ye! Hear ye!

So I forgot to mention Isaiah went to the Audiologist on Wednesday, partially because I didn't go. It was one of the first doctor visits I didn't go to with Rachel, mainly because I'm getting low on vacation time at work and have multiple projects at work in varying stages of completion that is keeping me rather busy. I'm going to limit myself to just the specialist appointments and important things like surgery days, etc. Mom's fully capable now and able to drive again and now knows how to unfold the stroller after I walked her through it on the phone.

His tests went fairly well. He still failed one test in his left ear, but on further review it turns out he has fluid in that ear which is causing the failure. It could be nothing, it could develop into an infection, but all in all it just needs to be monitored a bit more closely. Right now it could be one of the many things making him a great big Crab cake. Apert Syndrome kids do have a tendency to have more frequent ear infections than normal babies and some form of hearing loss due to all the skull shape issues so we knew he had to be watched a bit more closely anyways.

26 August 2008

Surgery is Set

Well his first surgery is officially set now. He'll be heading into Children's @ Scottish Rite at 9am on September 10, 2008 for his first cranio-facial surgery we described a couple posts ago.

He's getting real big and eating tons lately. Rachel and I noticed yesterday night how plump his cheeks are getting and that the little ripple rolls are gone under his chin and replaced with one giant double chin. He's still cute as can be and all this growing hopefully will help him be better suited for the surgery.

The only thing we're worried about is all the growing may mean his brain is trying to grow at the same rate with no where to go which could explain his extreme crabbiness lately (even moreso than it was before my Mom was in town) Hopefully we and he can make it through the next 2 weeks with some semblance of sanity.

24 August 2008

10 pounder

Sorry for the lack of posts lately. We've been busy raising a newborn and haven't had as much free time as we used to!

Anyways it was a busy week for doctors visits, but next week should be a bit easier with only one on the calendar as of yet. We have a tentative surgery date now of September 10.

This is going to be relatively short since I'm fairly tired and should get to bed while Isaiah is still sleeping, but I thought I'd let people know he's growing and has already surpassed the 10 lb mark!

20 August 2008

CT scan results / First Surgery

So yesterday afternoon was a fun day at Children's Hospital and the Neurosurgeon's. We first had the CT scan which Isaiah went through just fine. For some reason he decided to be a good boy most of the time at the doctors and didn't throw any huge fits, which was great. he let us know he was hungry around 2:30 but that was about it.

After the CT we went to Dr Hudgin's office so he could read them and help determine the schedule of his surgeries. He found that both Coronal sutures were fused as well as the Sagittal (the Coronals arch over the top of the head from ear to ear, the sagittal runs from the coronals front to back) The back of his skull was very thin, most likely because of all the pressure inside his little head. So the verdict is we're going ahead with surgery in the next 2-3 weeks which could be when my Dad, sister and her husband are in town right after Labor Day.

They would normally like to have him be about 3 months, but its better to do it sooner so that his brain will properly grow and we don't lose as many IQ points.

The surgery sounds kind of crazy when they described it to us. Basically they are going to slice his skin around the coronal sutures and sort of peel it down to work on the skull. It sounds gross, but they only do one incision that will eventually be hidden by his hair. They will then cut out portions of the skull to open the coronal sutures and the sagittal bone completely. Additionally they will move his little forehead forward a bit over the eyes. Essentially all of this is just to give his little brain more room to grow and these will all fuse back up sooner than normal and we'll have to go through this whole process again in around a year.

The surgery itself will only take about 3 hours or so, but he'll be in a Pediatric ICU for a couple of days and then moved to the neurosurgery post op floor in Children's for maybe 5 days. We don't know if he'll have to wear a helmet for a little while or what, but I was kind of thinking they're essentially just opening up what would normally be open on a baby his age, so maybe not.

We'll find out more on Friday when we meet with the cranio-facial surgeon.

17 August 2008

Killer Wasps!

So we had a bit of a fun afternoon today. Brian was doing the lawn since 'zay was awake. Front yard was fine, back yard was another story. About 2/3rd's of the way through I got a little welt on my leg. Thinking I just hit a pine cone and something flew out and smacked me I kept going until I kept getting bit repeatedly by killer wasps! I was running around the backyard screaming trying to get them off and ran into the house where Rachel thought I had cut off my foot or something. I'm sure the neighbors thought there was something crazy like a murder or something going on, but I was overreacting a bit since I'm fairly allergic to bees and thought with all the stings I'd be in intensive care or something.

I apparently had 3 of them on me that followed me into the house so we were super worried about Isaiah getting stung too. (Rachel took at least one sting in defense of Brian) It was pretty crazy and I'm lucky they weren't bees or that I'm not working tomorrow because I've got about 7 sting marks on my legs and wearing pants right now is not an option, I've got a couple more on my arms and one on my neck so I'm not shaving either.

Oh the fun of it all. We've got to take care of the wasps somehow quick here so that we don't need to worry about Isaiah getting stung anymore

15 August 2008

Poop!... There it is!

The tag team of Brian and Rachel just had a 4 diaper cleanup here at the 4am feeding. Rachel was taking care of the first messy messy diaper and cleaning him up as he decided he wasn't done. We're both kind of punchy at this point and just started laughing because we've never had the diaper off and him essentially pooping in our hands as we hold the new diaper on. Thank goodness we had the new one slipped under the old one before we fully took it away or we'd be talking more about the laundry right now. He messed the second diaper up pretty good and as we were trying to get him clean again he still somehow managed to find a bit more and mess a third diaper. After a two man effort we finally got him completely clean and into diaper #4 which is what he is now wearing. All of this in about a 10 minute span.

He just sat there, happy as a clam, almost mockingly smiling at us, the whole way through. Now he's wide awake and so are we so we're watching the women's gymnastics win gold and silver live at 4.45!

I'm sure work will be fun later today.

Anyways my Mom is coming in from WI Saturday and hopefully bringing kringle and seven sisters danish! It'll be nice to have her help and give Rachel's Mom a bit of a break since she's been carrying a heavy load helping us a ton this last week (and letting me go to the braves/cubs game last night with Uncle Micah and Grandpa H)

14 August 2008

We got a little more sleep last night, emphasis on the little. He's still very very fussy during the day and through the evening and its getting us feeling a bit overwhelmed. Rachel's been counting on some time to call people like the insurance companies and doctors but she hasn't had any since she's been dealing with Isaiah most of the time and any chance she gets she takes a nap (which I don't blame her for) Other than the lack of sleep for all of us, we're doing well!

13 August 2008

crying fits continue

Sorry for the lack of posts lately. Isaiah's been a bit more than we could handle the last few days. We had a couple of appointments the last few days which have thrown his relatively comfy 'schedule' out of whack. He's been crying a lot at night which could be colic, or it could be that he's got too much pressure inside his little head.

The appointment yesterday was with the Neurosurgeon, who also happens to be the head of Neurosurgery at Children's Hospital, Roger Hudgins. He was very nice and seemed very confident in his dealings with children with Apert Syndrome. We have another CT scan scheduled for tuesday next week to determine if they need to ramp up the timetable for the surgeries since what he did see from the MRI's and CT scans that were taken right after birth show very little space for the brain to grow which may be what is causing all his discomfort.

He's up to 120+ cc's of food a feeding plus with his crying fits he needs to eat more often since he's expelling all sorts of energy. It's draining and Daddy has brought home work the last couple nights to try and keep his hours up, but he hasn't had a chance to do a thing yet.

Other than lack of sleep and dealing with the crying we're doing well. We feel better somewhat after meeting the neurosurgeon and found out through Rachel's Dad's contacts that we have some of the best, if not the best doctors in the SE US on the team. Especially the two biggies in Dr Hudgins and Dr Burstein (Cranio-facial surgeon)

10 August 2008

Photo update!


Alrighty, selected photos from the last week are up for your enjoyment. We've been busy, but I think anyone dealing with a 3 week old would be too, don't you think? Anyways, we've got an appointment with Babies Can't Wait tomorrow am which is Georgia's state program to help babies at risk for developmental problems to see if we qualify for enrollment. We're still not quite sure what all they can do for us, but if they can help, we'll take it! Then on Tuesday we meet with the Neurosurgeon for his initial consult.

Still alive!

We've had a busy weekend so far which is why we've been lacking in posts. All is well here, just taking care of business. Being parents takes a ton of time and most of it is tending to our little man's beck and call while trying to fit in things like mowing the lawn, cleaning the kitchen, and doing laundry in between.

I did manage to get a video up and should have the photos up later tonight. Enjoy Isaiah's first trip on his little swinger...

08 August 2008

Sleep is good

Last night was the first time in a long time I got a full 8 hrs sleep. It was broken down into 2-3 hr segments starting at about 9:30 until 7:30 this morning, but I think I got pretty close.

Anyways there have been a ton of different nicknames flying around for Isaiah so I thought I'd start a little list here and see if anyone else has suggestions too. As of right now its still kind of hard to spit out Isaiah at 2am. Its a bit of a sleepyhead tongue twister for some reason.

Anyways in no particular order and in the voice of Rob Schneider, the copy guy, who comes up with all the nicknames:
Izzy, Iz, Is., 'Zay, IJK (pronounced 'IKE' much like Bjork is pronounced 'Bah-york'), and last but not least after the last few nights, Mr. Crabby cakes.

We're fairly certain that (pick one above) is begging to show signs of Colic. We tried some Soy formula last night which did help him sleep through the night considerably, but we think we'll still go with breastmilk during the day minimally and continue the combo feeding style if he can handle it.

Anyways I've got to run to work soon, pictures will go up this weekend, I promise!

06 August 2008

Fussy Fussy

So tonight has been a bit frustrating. He's been fussy and not sleeping since he woke up for his feeding at 7:30. I was hoping to get the pictures up but Rachel and I have been trading off keeping him company and trying to get him to bed, so tomorrow hopefully.

Anyways today people started cooking things for us at my work which is great. We're going to be getting meals MWF for a little while at least which will help with the stress level and pocket book as we try to ease into this new stage in life. Also someone at work who wished to remain anonymous has given me four of their vacation days since I'm at the brink of going over mine with a ton of appointments to go. Thank you whoever did that, it is greatly appreciated!

Rachel and I are constantly amazed at how much people want to help and are praying for us. We can't thank everyone enough because we know every single thing someone does for us and every prayer they say for Isaiah and us does help. Rachel's grandma told her Mom something that has really encouraged us saying something along the lines that God gives the special children to his special people because He knows that we will care for them unconditionally and that we can handle it.

We know this all happened for a reason, and what that reason is isn't exactly clear right now, but we know we will gain so much out of this experience. We've gained a ton of support in our short time here in GA, we'll grow by leaps and bounds as Isaiah does too. This all is a positive thing in a way, just a really stressful one right now since we're still gathering everything together and probably will be for some time.

Quickie

I'm at work so I only have a second to update. We got Rachel out of the house for her Birthday last night - the first time she's been outside the property since he came home last week.

Also we'll get more pix and videos up soon. I'm the one who's been uploading them and with working, coming home to the baby, cleaning, and sleeping, much more of my time is spoken for than before since I'd like to try and give Rachel a little break from her days with him (though Rachel's Mom, Dad and Sis have been helping her out during the day). I'll get things up as soon as I have a spare hour, hopefully tonight, but by this weekend at the latest.

04 August 2008

Sleepless in the Suburbs

Man people weren't kidding this parenting thing is work! We're getting a bit more sleep now that I've figured out the monitor some, but still not as much as BI (Before Isaiah). He's eating like a horse still which is great and bodes well for him making it through the surgeries better in a few months. Rachel set up most of our consultation appointments with the specialist and survived her first day without me because she is super mom! Plus Isaiah's Diaper rash is getting much better now.

It was tough for me to go back to work today. I knew I had a ton of not so fun work to do and all I wanted to do was stay home and play with Isaiah. Plus I barely slept so the first few hours of work were that much harder. I hit my second wind around 11am but am slowly crashing down now aned will be wide awake around his midnight feeding again. Being a night owl is great in some respects, except that I'm at work when my body wants to sleep which doesn't quite work out too well. If it weren't 90+ degrees out all this week I might be taking lunch naps in the car!

Rachel's Mom and Hannah continue to help today which makes both of our lives a bit easier. Me so I can relax a bit after work before fully digging in to parenting, and Rachel so she can get some much needed sleep. We're relishing it while we can, because we know it won't last forever.

02 August 2008

Frustration!

Out of curiosity I looked up the Bible verse Isaiah 7:17 (his birthday) and this is the NIV translation

"The LORD will bring on you, on your people, and on your father's house such days as have never come since the day that Ephraim separated from Judah, the king of Assyria."

That's fairly fitting because our lives are forever changed, but the rest of the verses go on to much more serious stuff talking about the coming of the savior. While we definitely hold Izzy in high regard, we're not crazy enough to get that literal about the passages though.


Anyways, the monitor is still giving us hell and the company is not responding whatsoever. We called their office now and it says number disconnected. I tried their 1-800 number and it says call cannot be completed. Maybe its just because of the storms that rolled through earlier today, but we're still freaked out about a night without him on the monitor. Nothing has really gone off as of yet, but we still worry.

Long night last night

Sorry for the lack of updates. We're all doing fine, but dad did jinx himself with the monitor talk. It went off incessantly last night. Not because there was something wrong with Isaiah, mainly because the cord is screwed up so it likes to beep real long and loud. Its having 'communication issues' We tried calling their on call staff, but no one picked up, so his monitors are off right now which is a bit scary, but he's doing fine.

He's got diaper rash something fierce right now and some wicked gas to go along with it. The doc says its all normal due to his little GI tract just getting going and that eventually he should grow past it. It probably doesn't help that Mommy ate broccoli and pinto beans with her meals the last few days. We didn't realize the gas passes through Rachel's milk to the baby, but now we know!

Anyways, because of the alarms last night we're super exhausted and we're on our own tonight for the first time. Rachel's Mom was here the last three nights, but we've got to do this on our own once before I head back to work Monday. I think we can handle it, but the extra pair of hands always helps.

More to come later.

01 August 2008

Day 2...

So he did relatively good overnight again. His feeding schedule is still a bit wacky, but its starting to even out at about every 3-4 hrs. We fed him formula overnight since he drinks that down like nothing else and its got a few more calories in it in hopes of sustaining him longer which worked for the most part. We're still giving him his Zantac every 8 hrs and Flonase drops every 12. Ideally we'd like him to be solely on breastmilk, but since he's so big and Mommy's stuff isn't fully in yet we don't have enough to fully sustain him yet, especially at his size.

Today is a kind of big day. He goes to the pediatrician at 8:30 this morning, so since we're up at 5:30 due to him being hungry, we're up to get ready to take him on his way. Hello big cup of coffee!

Its our first travel trip with him in tow so hopefully we've got all the essentials needed packed in the diaper bag. 5 diapers, Wipes, hand sanitizer, emergency premixed formula, burp cloth, extra outfits, vaseline, extra pacifiers. We're probably missing something, but we won't know for sure until he wants it or needs it right?

So far with having him home he's been pretty much like a normal baby. Despite not having individual fingers and toes and a bit of a precarious head its business as usual for now until it comes time for surgery.

Oh and yeah this will probably jinx us now, but we have yet to have his heart and respiratory monitors go off yet which has helped us get sleep when we can!