31 December 2008

Happy New Year's Eve

My parents are coming in from Racine, WI today to celebrate the New Year and see Isaiah before the holidays are completely over. I found a great Polish sausage place about a half hour from our house and picked up some fresh (unsmoked) Polish Kielbasa and Cherry filled Pierogi (polish dumplings) which has been my family's traditional Christmas breakfast for as long as I can remember. Since my parents weren't here for Christmas we're going to do it for New Years Day breakfast! Anyways I've got to run and pick them up from the airport.

27 December 2008

Christmas: The Aftermath

Wow, Isaiah made off with a pretty good haul on Christmas and I got to take on the task of putting everything together. You'd think that infant and toddler things wouldn't have too many small pieces, but there are a good number of things to do yet. Our living room floor is covered even more now in toys so Rachel and I are going to take him to his first trip to IKEA to see if there's some sort of good storage bench we can get to put all his toys in the living room into. My ultimate goal in the next 6 months or so is to partially finish off a portion of the basement and make that a playroom for him and an eventual media theater for us as he grows up. That way we can get a bunch of the toys out of the everyday path of things and have a good place for him to spread out. Our basement has relatively low ceilings at +/- 7 feet when most ceilings are at a minimum of 8' in a typical house so I'm trying to think up a creative way to make it all work without feeling super short.
I hope everyone had a Merry Christmas!

24 December 2008

Christmas Eve


Well tonight Rachel and I cooked a good dinner for ourselves. In my family we traditionally celebrated with the extended family on Christmas Eve at my Grandma's. We'd always have a nice dinner (prime rib I think) and open presents afterwards. I usually barely ate anything since I was always so excited to open presents. We'd then have our personal family Christmas at home.

Here we're kind of flipping things somewhat. Its just me, Rachel and Izzy. I made some nice bacon wrapped tenderloin steaks and Rachel made some awesome mashed potatoes, green beans and pudding. What we weren't expecting was Isaiah's little 'dessert' for us which was a nice big poop! I swear this kid has the best timing. He might be the next Robin Williams or something.

Our plan was to give him a little bottle and open up some presents here tonight before heading over to Rachel's parents tomorrow, unfortunately with the bottle came a nice big drowsy baby. Rachel and I are still deciding if we want to open a few of our gifts tonight, or just wait until tomorrow morning at her parents. I don't especially want to lug everything over there on top of all of Isaiah's baby stuff, but we'll probably bring a good number of them.

Merry Christmas everyone!

21 December 2008

Church 2.0

So we tried taking Isaiah to church again today. This time we went to Northpoint with Rachel's parents and brother. We swear every time we try to go to church this little guy does something to throw a little bit of a monkey wrench into things. This morning was no exception. Essentially right after Rachel gave him a bath he decided it was a good time to poop up his back. Running thin on time I had the bright idea of rinsing him off in the kitchen sink with the sprayer, rather than setting up an entire new bath for him. So here I am holding a naked baby over the kitchen sink while Rachel sprays the poop off of him and cleans him up. He, of course, hates the sprayer and decides to add a little spray of his own and pees all over me. (Luckily I wasn't dressed for church yet) We did manage to get him dressed and clean ourselves up and get on our way to church. That was the first half of today.

The second half was while we were at church. Northpoint, if you don't know, is a contemporary church pastored by Andy Stanley and has a fairly loud pop/rock like worship band. Isaiah was fine sitting in the seat waiting for church to start and the first song of worship was fine for him (slow and quiet) then for the transition to the second song there was a big loud bass note, hit of the kick drum and a big flash of lights. Isaiah reacted like he was just electrocuted. He was sitting on Rachel's lap and his arms went straight out to his sides and he flinched backwards into mommy. He then took about 20-30 seconds to realize he really didn't like this and decided to 'sing' along with his trademark wail. Needless to say we spent the rest of service taking turns with him our in the hallway, with Rachel and her Mom taking on the brunt of it. I think it was too loud for him and he's probably been a bit overstimulated and is cranky from all his travelling this week. (Rachel and Isaiah went up to Lima, OH with Grandpa Hanthorn to see his Great Grandma and Grandpa and a bunch of Rachel's extended family. Rachel promises to write her first post soon recapping the events!) He's been cranky pretty much the rest of the day and hopefully he'll sleep well tonight.

11 December 2008

Hands up if you hate insurance companies

Well good news and bad news regarding Isaiah's hands. We could possibly be having his first surgery as soon as 12/24, bad news is our specialist will no longer be with our insurance after the new year which poses a pretty big issue since our insurance currently has a 70/30 $20,000 deductible for our of network providers and that only covers the 'usual and customary' rate so anything Coventry deems above the UCR is our responsibility 100%. We're trying to see if Coventry will allow our speicialist to be considered in network for him due to the fact there aren't any other doctors locally that can handle this type of surgery, but that could take a few weeks. We do have a possibility of getting into the Shriner's Hospital in Philadelphia (their hand center) and the doctor that would be doing the surgery is the one that trained our specialist here so we know he is a good doctor. We're still early on and ultimately trying to keep it local if possible, but we do have other options. We probably won't go through with the surgery on the 24th if we can't use our surgeon here since its best to keep the same surgeon for all of the subsequent surgeries. We can do all our follow up appointments here with our specialist since he can negotiate some of their costs in their office somewhat, but he has no control over what the hospital charges him to do the surgeries there, which is what would really hurt us financially.

As for the appointment on Tuesday it went well. He had another set of Xrays done and the the phases of surgeries were planned out (before all the insurance fun).

The first phase is to fully separate the thumb and pinky fingers on his right hand and to separate only the bones that are fused at the tip in the other 3 fingers so that his hand can grow a bit flatter. The left hand they would only be separating the fused bone tips at first since there is no evident thumb to separate out right now. With separating the fused bones the fingers will still be fused over with skin for the time being, but it will allow the bones underneath to grow straighter and help prevent more problems down the road and allow for the next phases of surgery to happen.

Phase two (which would occur approximately 3 months after phase one) they will fully separate out one of the fingers on his right hand, (either the ring or pointer) and separate the pinky and thumb or pointer of the left hand.

Phase three (again 3 months after phase two) they would look into seeing if its feasible to separate the last two fingers on the right hand and separate out at least one more on the left.

All of the further phases depend on where his blood vessels are and a number of other items do have an effect as well. basically if he's only got one blood vessel serving two fingers you can't seperate them since there will be no blood flow to one of the fingers.

His hands in general will always be a bit stiff and not like yours or mine and the ultimate goal is to get him a minimum of three fingers and a thumb on each hand. Sometimes trying to get that fourth finger can be done, but if its not functional, its really not worth it.

Plus who knows, they way things are working in the medical industry now he may be able to get a full hand transplant when he's fully grown.

All I care about right now is that he eventually have the opportunity to grasp things on his own and be able to feed and clothe himself in some manner, rudimentary or not. If we have to travel to Philadelphia, so be it. Are we angry about the insurance coverage here, most definitely! All I care is my son's hands get taken care of.

06 December 2008

Happy St Nick's Day

Happy Saint Nicholas Day!

My family's tradition when I was growing up was to celebrate St Nick's day by putting out our shoes the night before and waking up to an ornament and candy filled shoes if we've been good. It's a German tradition that not everybody celebrates, but its a fun little thing my family did that I'd like to keep doing. Rachel and I have done this for each other the last few years and this year we got little Izzy involved too! We have a little video of this morning for your enjoyment.

29 November 2008

Shop-Ping!

We did end up taking Isaiah out shopping with us yesterday afternoon. We're mainly looking to upsize to a queen bed from my grandma's old full size so Rachel and I can have a little more space now, and enough space for when the thunderstorms come when Isaiah is a bit older. We were pretty amazed at how few shoppers were really out and about in the afternoon and of all the places we went, we ended up spending the most at Target. I guess you can't take the Minnesota out of us yet! (target's headquarters are there and there seems to be one every other exit from the hwy) We did find a bed we liked at Crate and Barrel that was fairly afforable and may go back tomorrow to get it. Then we have to get the matress and all, but we're looking at a platform bed so we won't need a boxspring since its got a flat bottom already. My Mom gave us a bit of an early Christmas gift with a bit of money to use toward that and some of the other things we need to get around the house since our money has been mostly diverted to Isaiah's needs and the mortgage. We'll probably be buying a shed soon to get the lawn mower and things out of the basement.

Anyways he did real well out and about which is always good since it helps Rachel to be able to go do errands when she's alone with him during the week.

28 November 2008

Day After Thanksgiving

No we're not out at the sales. Somehow I think try to navigate the madness in our big ol' limo sized stroller with him would not be a good time. Traffic in a car in Atlanta can be frustrating enough, I don't want to have to deal with it with people and a stroller. Anyways, we've got another video for you all to enjoy. Isaiah doesn't say much, but you do get some cute pouts and a couple of smiles mixed in with his snorts...

26 November 2008

Happy Thanksgiving!

We've got so much to be Thankful for this year! especially all of the help and well wishes we've received from all of you. We've got a healthy baby boy, with a couple of major issues, but all things that can be dealt with in time. We're so happy and lucky to have him. We're finding out fast that there are some great people down here that have offered their ears, their arms, and their wallets to us. We've got great support almost nationwide too! So as a quick little sign of thanks we've got this little video for you all to see the little guy in action.

24 November 2008

Visitors

Oh, we've had a few people ask us recently about visiting, or if we're 'stress free' enough to let people other than our families come visit or if Isaiah is healthy enough for visitors. Obviously from the last few posts he's definitely healthy enough. While we're definitely not stress free, Mom and Dad are doing alright to have a few people come by every once in awhile though we'd prefer not to make our (disheveled) house a parade ground. If you would like to come by and don't mind a cluttered house leave a comment or email us (the comments come to our emails) and either Rachel and I will get back to you.

PICTURES!


Okay okay okay, I've promised these for long enough, and since I'm back awake tonight I figure I can at least get them online. Not everything is captioned or culled through for the repetitive or embarassing shots of Mom and Dad (yet that is) Enjoy!

You can find them all here and I'll update the sidebar soon.

The pictures include what we've got from the Benefit Concert October 4th, through Halloween.

I hope to get a video up soon of Isaiah 'talking' but that most likely won't happen until next weekend.

23 November 2008

More good news

Saturday Izzy had his 4mo check up with Dr. Leonard, his pediatrician and got another round of immunizations. He's officially 15lbs 13oz (the 16lbs earlier this week was with his clothes on) I didn't catch his height, but both his height and weight are in the 75th percentile. His head circumference is 41cm and is only around 25th percentile, but its still growing outward which is good. The doc said he's doing pretty much everything a 4 month old would except turning himself over, but she did say that its not much to worry about yet. Next month we get to start adding some rice cereal to his diet and at 6months we may even start him on the jars of food. Its all pretty exciting.

Yesterday night I had a good break and got to go to an Atlanta Thrasher's hockey game with my neighbor Josh. I'm a huge hockey fan if you didn't know already, and its a close third on the things I miss about Minnesota behind my family and friends. The Thrashers lost, badly, but it was still good to get out and do a bit of yelling at a sporting event. Today Rachel and I had a bit of a more civilized respite going to the Opera here in Atlanta. We saw La Cenerentola (Cinderella) and went back stage with Rachel's Dad and got to meet much of the cast. It's always interesting and still a rather new experience for me, but still a good break. It got Rachel and me out of the house for about 5 hours and helped us feel a bit more normal again, which is always good.

18 November 2008

We're still here

Sorry for the lack of posts. It just seems like there aren't enough hours in the day for everything we need to do sometimes. FYI if you sent a check to Bands for Baby that hasn't been cashed yet, don't worry, it soon will be. The person maintaining the account for us has been traveling a bunch lately and hasn't had a chance to get to the one bank that the account is in, but she should be doing so soon.

As for Isaiah, yesterday was his four month Birthday and he had a ball of a day (at least what Daddy saw last night) We didn't really do anything special, but he's been a happy bubbly baby lately. He's starting to 'talk' a ton more lately and he's got smiling down pat. Occasionally we now wake up to his giggling instead of crying.

He went to the neurologist last week who says his brain is developing quite well and that Mom and Dad are doing a great job. His muscle tone in both his arms and legs are good, but he's favoring his right arm some and the back of his head is still a bit too flat. He's already 16 lbs! (with his clothes on) and almost too big for his car seat. He's almost doubled his birth weight which usually doesn't happen until 6 months. All in all he's doing good and has hopefully his last CT scan for awhile today to be sure that the risk of Hydrocephalus after his craniotomy is done.

03 November 2008

Update!

I finally found the camera cord and got the photos onto our computer. Now I just have to upload a month's worth of photos! I've got a sleep study tomorrow to help figure out what's wrong with me and an MRI on Thursday. I haven't let everyone know personally yet, but we've been dealing with a bit of stress lately (go figure on what!). Rachel has been handling it pretty well, but my lack of sleep the last 3+ months has really caught up with me and its been a rough last couple weeks for me hence the lack of posts. My main problem is I stay up worrying all the time since I've never had to provide for a total of 3 people all by my lonesome, but I know I just have to trust in God and know that we will be provided for somehow. We're doing better now and we just need to pinpoint some of the things affecting me so I can be put on Ambien or whatever else I need to be on to get some sleep.

We completely jinxed ourselves with the sleeping through the night post as he hasn't done it since. He is pretty much down to just waking up once a night though, which is still really good. He giggled the first time the other day for Rachel, but I've yet to hear it. He is smiling a bunch more now and is much more vocal, both in his crying and cooing. Its been awhile since we've been to the doctor with him and we're sort of getting used to not having to run around all the time with him which has been nice. Its almost like having a normal baby minus the heart monitor which we hope comes off soon.

24 October 2008

Sleeping!

We're finally getting abit more sleep now. Isaiah virtually slept through the night for the first time on Tuesday, from about 9pm to 7am, but he's yet to repeat the feat to my chagrin. At least he's usually only waking once a night now though, so there's still hope!

Anyways his development is coming along quite nicely. He's figured out he can move his head on his own now and enjoys looking around the room a bit. He's also loving the fact he can make his bouncy seat bounce all by himself. He just gets this huge smile on his face nowadays like he's proud of his accomplishments, however small they may be. (Both Rachel and I get that big smile on ours the same time too!)

We're constantly amazed at how happy and bright he's become since the craniotomy and hopefully it was done in time to prevent, or at least reduce the amount of developmental delays he may endure.

I've been fairly busy and was back in Minnesota last week for my Buddy Steve and Erin's weeding and we have another wedding this weekend here in ATL, but I promise I will have those benefit concert photos up soon!

14 October 2008

Good News

We are negative for Hydrocephalus again! While that is good news on its own, there is better news. Since it hasn't shown up yet, there's a very good chance it won't at all, so we won't have another CT to monitor it for another month, and then 6 months after that so things are looking up.

Rachel and I we're able to get out of the house tonight for a much needed 'date.' We went to go see the Thrashers play the Minnesota Wild here in Atlanta thanks to some free tickets. It was nice to get out a bit and scream and yell. Plus it was like when Rachel and I were first dating and I started introducing her to hockey taking her to the games I had in my half of our Wild Season tickets back when we lived up there. We sort of felt normal for a little bit there, and then a wave of tiredness hit us both at about 9pm and we barely made it through the rest of the game, but I can't leave a hockey game early, especially a MN Wild game! The Wild won 4-2, which was an even greater gift!

Now we need to go get some sleep.
Sorry no pics yet. Brian's been sick since about Thursday night and it got real bad over the weekend. We'll get them up as soon as we can.

In other news Izzy's got another CT scan today to check on the hydrocephalus. Hopefully it comes back negative again. We've already had to stop feeding him since they think they may need to sedate him today since he's a bit older and more active. Hopefully the pedialyte will hold him over until 1pm otherwise Rachel's in for a long morning.

09 October 2008

Post Concert Update II

We're still getting donations in it sounds like so we don't have a 'grand total' yet. Karlee is thinking though that it'll be in the $3500-$4000 range, which is great! Also the last band, the Mike Watson band, apparently took off one of their drum heads and signed it for Izzy, as did some, if not all of one of the other bands, the Rhythm Raiders. Its pretty cool and will go well with all of the other music stuff I have from my days in radio. We'll be hanging it up in his room though, but it's still pretty cool.

I haven't had a chance to download the photos yet as work has been very busy this week for me and I'm starting my flex time / part time job today too. We'll have them up this weekend for sure though.

Sleeping!

So good news, lately he's been sleeping more and more through the night. We haven't gotten to a full night yet, but the other day he was down from 8:30-5am! Both Rachel and I were like ' did you get up in the middle of the night to feed him and not wake me up?' but nope, he slept that long. That was Monday night and the last couple nights have been pretty much the same.

Rachel's been trying to side sleep him to work on the flat spot on the back of his head. Our Physical therapist from Babies Can't Wait gave her some good pointers that help keep him from wiggling out of it. She also gave us this special chair to sit him in since his legs are getting a little 'froggy'. Its basically designed to help keep his legs more in vertical alignment with his body than to allow him to end up a bit bow legged which is where he is starting to lean a bit.

Development wise he's still swatting at toys very well, he's getting more and more tolerant of tummy time and now reaching for his toys starting to make crawling like motions, but going nowhere as of yet. He's also cooing more which has been fun to hear him start communicating more than crying or grunting.

05 October 2008

Post Concert / Welcome!

Well all in all Rachel and I are beat, but we had a great time at the benefit concert yesterday. Isaiah lasted out there way longer than we even expected and was able to stay from about 3-8pm. If you're just first coming here after getting the blog card at the concert you can scroll back and get more of the story about Isaiah. There are a bunch of picture links on the left hand bar and we'll have some from the concert up soon. Welcome!

There are just so many people to thank for yesterday I barely know where to start. First and foremost, I want to thank Karlee Brown for all her help getting this organized and put together. I've barely known her for more than a year and only from work, but its great that people like her exist and want to help us. She's the one that brought everyone together and really made the day possible. No matter what anyone else thinks, this day was a complete success to us. It doesn't matter how much money we raised on that one day, we've gained so many new friends and extended family members now that want to help I know we're in good hands for years to come.

I also want to thank the American Legion - Red, Max, Dan, Barry, and there was at least one more I think was named Carmello. I understand they've raised quite a bit of money for us already and it sounds like they'll be part of our extended family for quite some time. They were security for the day, and great guys all around.

The bands were great too, Mojo Hand, The Loose Shoes, BSG Project, Rhythm Raiders, and the Mike Watson Band. The music was phenomenal, I had to stay to the very end and take it all in. I want to thank them all for sharing their time and gifts with us all.

I also want to thank all the volunteers that helped make the day possible, many of them my co-workers, Karlee's family and friends, and even the Mayor of Mountain Park and their Fire Department and EMS. There were a ton of local businesses and restaurants that donated items for the raffle which also sounds like it was very sucessfull!

Last but not least, thank you to everyone that came out yesterday. There may not have been thousands of people there, but it sounds like everyone who came was very generous. We hope you enjoyed yourselves and maybe we'll try and make this a yearly thing if we haven't burnt out Karlee too much in this process.

We'll know the full total of the proceeds come Tuesday, but thank you EVERYONE for your help and generosity!

03 October 2008

Day before the concert

Rachel and I are excited for tomorrow's concert to see how many people turn out. I've put up some flyers at local usinesses by our house, Hannah (Rachel's sister) put some up at her work at the Trade Secrets in Cumberland and North Point Mall and I'm sure my coworker Karlee has got them up all over.

In other news its been a rather quiet week. He did have an audiology appointment on Wednesday and his left ear is better, but still not passing. He still has a little fluid it there and as the Doctor made an analogy to it, its like he was fully congested before and not he's a bit stuffed up, but still not clear. His right ear is still just fine. He was cleared to start his Physical therapy again and had an appointment yesterday which I still need the download on from Rachel.

I've been super busy at work even though they did have to let a few people go on Tuesday which has us a bit worried since I'm the only income right now. Hopefully my busyness continues and I get to keep my job. I'm not super worried, but with things as they are now, there's always a chance.

26 September 2008

Waiting for gas

So I'm stuck at a gas station waiting for them to turn on the pumps since the corolla is nearly on E and ATL is still admist a gas shortage due to Ike. They said about a half hr about 15 minutes ago, so hopefully we can get some gas soon.

As for the hydrocephalus the CT scans came back negative today, but it was still enough to stress both Rachel and I out beyond belief. We still need to watch out for it and I think we'll be going back for another CT scan in a couple weeks, but for now at least we don't have to worry about them sticking a shunt into his brain to drain the fluid.

I mean c'mon can anything else go wrong? We're finally coping better with everything after the surgery and then this scare happens.

In other news rachel called while I was waiting here and said Isaiah swung at some of his toys unprovoked today! We've usually had to show him first and then he'll copy, but Rachel saw him concentrating real hard and then taking a swipe at one of his toys!

Hydrocephalus?

Rachel was at Dr. Hudgin's this morning to get Isaiah's staples out of his head and he didn't like how big Isaiah's head was looking. It seems he may have hydrocephalus like they feared we would have to watch out for. Rachel is now sitting at Children's waiting to have another CT scan done and she'll be heading back over to the doctors office so they can look them over and determine what the course of action is if he does in fact show signs of water on the brain.

I'm still sitting at work here on my lunch hour, but its a bit nerve wracking. We don't know anything for sure as of yet, but I felt like I should do an update today.

Other than this little scare, everything has been going quite well with his health. The incision/scar is looking good, he's been a bit less fussy lately and he's been sleeping quite well. We actually had to wake him up for his nebulizer and feeding over night, rather than him waking up first.

Before this whole hydrocephalus stuff came up Rachel and I have both been beyond stressed out right now, but for many different reasons. Its hard for me to leave her to go to work, but she's had a ton of help from both her Mom and Sister and my family when they've been in town. Even with them aroudn though, he's been so fussy lately you almost have to have him in your arms at all times and that doesn't even work most time. She's also been trying to deal with all of the health coverage snafus and EOBs and bills and calls to doctors while home, but it's been difficult to fit them all in. Me I'm just my normal stressed out self at work, but I don't exactly get the relaxation at home that I used to since I try to help Rachel out as much as I can when I'm home so she can get a bit of a break. We both, in general, don't feel like we've gotten much of a break since he was born, but much of that is normal first time parenthood, but a good chunk has to do with all his 'issues'.

We holding up though, but we appreciate any prayers and good vibes you can send our way.

23 September 2008

Bands for Baby - Donations

I just thought I would let you all know our co-worker has set up an account for the Benefit concert donations and if anyone not here in Atlanta wanted to donate you can send a check made out to
"Bands for Baby" to REMOVED. This account will probably only be open until about November 1st or so and is only in relation to the concert, but all of the money will get to us to help cover his health care costs.

Rachel and I are getting deeper into creating an actual fund for him that would be a tax deductible charity. We thought originally we could make him a 501(c)(3) non-profit, but there's a whole load of hoops to go through and we've had to regroup somewhat.

UPDATE 01/17/09: While Bands for baby's account is closed you can donate to us through the info in this post.

22 September 2008

Quick Update / Benefit Concert


Sorry for the lack of posts this last week.
I've been swamped at work, we had an ER scare with Isaiah on Thursday due to a little cold and fever, and my Mom was in town this last weekend, but all is well right now. He's on a nebulizer for a while now to help his lungs, but he's really doing quite well. He got a bunch of vaccinations today and while he didn't like getting stuck according to Rachel, he's had no adverse reactions as of yet.

In other news a couple of my co-workers have set up a benefit concert for Isaiah to help us offset some of the health care costs we have. It's going to be October 4th here in Georgia. Mountain Park, GA to be exact. Click the photo of the flyer, for a larger image. We hope, if you are around here that you can make it!

14 September 2008

Photomania!



So we've got a huge update of Photos dating back to last week thursday when My Sister, her husband and my Dad came to visit. We also have an album of our trip to the Atlanta Botanical Gardens, as well as all the surgical pics from this week.

FYI some of the surgery pics are somewhat graphic. There's a bit of blood and clear views of his incision and staples. PG-13 - Viewer discretion advised

We're home!

We made it home yesterday around 3:30 and he's done quite well. We're already noticing the swelling going down more and what he'll look like (for the next 10 months at least until his next craniotomy) We should be able to get pictures up sometime tonight.

His sleep schedule is a bit messed up right now. He's only sleeping for 2-3 hr increments again, but its most likely because of the pain in his head. He is sleeping more often though since I'm sure his body is working overtime to fight off any infections and heal up his head. he's eating more now too which is good. We hope to have him back to his normal sleep schedule by the end of the week.

13 September 2008

Going home

We are in all likelyhood going home today. His fever has gone down and he hasn't been over 100 since around 4pm yesterday. His bandages were taken off yesterday morning and we got to see his new face. He does look different, but much of that could also do with the fact he's still very swollen and he will be for the next few days. He's got something like over 50 staples (we haven't counted them exactly yet) across the top of his head. When his hair grows in the zag zig scars should be nearly invisible, it just means he can't shave his head. For the time being we figured if kids looked at him funny b/c of his scars we'd tell them he's Harry Potter's long lost brother.
We can only sponge bathe him for a while now and his staples will be in until a week from tuesday. The thing we have to worry about now is hydrocephalus (water on the brain). Now that the pressure in his brain has been temporarily relieved there is the potential that his ventricles won't be able to handle all the waste spinal fluid so it could build up. We just have to monitor it and we'll have a CT scan in a couple weeks to take a snapshot.

In other news his development is coming along, We've been putting objects infront of him and trying to get him to swipe at them which he is finally doing. He's been going at his big mylar ballon and a couple of his toys on a regular basis yesterday. We have to hold off on tummy time until the wounds completely scab over, but we should be able to do many of the other things his PT and developmental therapist have recommended.

11 September 2008

The Day After

Well today has been interesting and eventful. I went back to work today and stopped by to visit Mom and Isaiah at lunch since I had a site visit nearby that I was able to schedule right after lunch. Hannah and Rachel's Mom spent pretty much the whole day here with her which was good because while he did well through the surgery, he's got a good ways to go for recovery.
He needed another blood transfusion this morning since his hemaglobin levels were low, but that's pretty common due to the bleeding involved in head surgery. He's been pretty fussy and up most of the day, but he hasn't needed morphine since yesterday at 4pm, just his normal dose of tylenol every four hours.
We did have a bit of a scare this evening though. About 8pm when they came to do his vitals they realized he had a fever of 101.2 and in all the fuss of getting him out of my lap and back into the crib his IV's came out of his arm. His antibiodics were being administered through his IV as well as supplemental fluids. They tried for an hour and a half to re stick him to no avail. He's been notoriously difficult to get blood out of and find veins (especially now since I think they've pretty much stuck him all over each of his arms and legs). His fever peaked at 101.9 at about 10:30 and we tried cold compresses among other things. He had a big BM shortly after the temp and all of that probably helped him get down to about 100.9 at 11:30. He's calmed down quite a bit, still doesn't have his IV's in but Dr Hudgins is thinking its going to be okay so long as he keeps taking his formula orally. Rachel's actually got him sleeping in her lap in the rocking chair in the room right now.
We're fairly certain we won't get a whole heck of a lot of rest tonight, but I'm glad we're here. i couldn't see leaving him here by himself. Before all of the fever and IV issues tonight Dr. Hudgins had said we could potentially take him home tomorrow, but I don't know if that'll will still be happening or if we feel comfortable enough taking him home by ourselves yet.

Thank you to everyone for all your prayers and thoughts these last few days. Its been tough, but we really do appreciate each and everyone's help.

10 September 2008

Surgery Update Numero Tres

We're in his room with him right now! He's rather puffy right now and his bandages come down to the tip of his nose, but he's here with us. Everyone says he's done very well. His bandages almost make it look like he's just got a big white winter cap on pulled low on his head. He's pretty quiet right now since he's still sleeping off some of the anesthesia. He's got an IV going to give him some extra fluids and he's on oxygen for the time being. Both of us are rather hungry since we could barely eat anything this morning and now that its all over we're realizing we haven't really eaten much of anything since 6:30 this morning and its just past 2pm now.

We're still trying to figure out the lay of the land here in the PCA section of the hospital, but it sounds like one of us should be here at all times to watch over him, which puts a little monkey wrench into our plan of getting Rachel out to the RPA 15th anniversary party on Friday since her parents and sister are going of of town for Rachel's cousin Apryle's wedding in Iowa.

We wish we were going to go, partially since she made it to ours in Minny and its always good to see family since we're so spread out across the country now, but its pretty much out of the question right now.

We'll figure out what we can do to get out of here to eat at least and we're thinking we'll switch off nights of who sleeps here with him so the other one can get a full night's sleep. Anyways we just thought we'd let you all know we're all back together again and he's doing as well as can be expected.

Surgery Update Part Deux

So the surgeons came into our little pre op room about 20 minutes ago to say everything went well. He's currently getting all bandaged up and going to the recovery room for about an hour. He had his sagittal bone completely removed, his coronal sutures opened up and they moved his orbital rims (the area around his eyeballs) forward all to give his little brain room to grow and make sure he'll be able to close his eyelids as he grows. He's got some plates and screws in his head that will all dissolve in time so there's no need for them to go back in to remove them. He also won't need a helmet as of yet since it would actually constrict things further and this surgery was all about opening things up.

He took about 180 cc's (6 oz) of blood and will probably need a bit more as he recovers, but he's doing so well they say that he'll probably get to skip the ICU and go straight to a regular room in the neurology wing. We should be able to take him home sometime this weekend.

As soon as we can we'll take some pictures of our 'new and improved' Isaiah!

We appreciate everyone's thoughts and prayers these last few days and know that it all helped him go through this all so smoothly for such a serious thing.

Surgery Update

Thanks to the generosity of my work, I've got a laptop with me today. Mostly to check my emails since I've got a project just about complete that needs quick answers. Unfortunately I can't seem to reply on my work's exchange server so I'm taking a break to update everyone.

First off we had to stop feeding him milk or formula at midnight last night so we kept him up as long as possible since he usually only sleeps 5 hrs straight after the first time we feed him and put him down to bed. Sure enough he woke up at 4:30 hungry and we were able to give him some pedialyte to hopefully tide him over, which suprisingly worked!

We've been at the hospital since 7am this morning and anethesia took him away at 9am to prep for surgery. They started the actual craniotomy at about 10am and we're just waiting now to hear when he's done. He'll go to the recovery room after that and then stay here for the next few days.

We were told yesterday he's not going to look the same as he did before, which hadn't sunk in to us before, so we spent most of the night and this morning taking pictures. We'll be taking plenty of after photos as well.

Yesterday we visited with the hand specialist which I'll update more about later.

Anyways, back to the waiting (and work too!)

08 September 2008

Short Update

Sorry for the lack of updates lately. We've been rather busy. I was in Arkansas for work earlier this week and we've had a ton of pre surgery doctors appointments and we've got more before his surgery on Wednesday. Additionally my Dad, my sister Becca and her husband Anthony were in town from Wisconsin and Minnesota Thursday through Sunday night which has kept us rather busy as well. We did take a ton of pictures and he had his first excursion out to the Atlanta Botanical Gardens where he did fairly well so we'll have an update with those pics and more sometime this week whenever I have some spare time to upload them.

I'm trying to work as much as possible today and tomorrow before the surgery in case I need to be off more later in the week, but as of right now I've just got Wednesday off for the surgery and tomorrow afternoon for a couple hrs for the appointment we have with the hand specialist.

On a good note he is starting to sleep longer in the nights the last couple days. His actually gone 5-5.5hrs between feedings sometimes overnight which has been a welcome change to our sleep schedule since it means we're usually only getting up once or twice in the night rather than 3 or 4. He also weighed in at 12lbs 3.4oz on friday, but that was with his clothes on so he's probably more around the upper 11lb mark. He was also 24.5in long which explains why he's not fitting in the 0-3 month stuff anymore.

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!

31 July 2008

The first Day

So it seems the daylight hours make Isaiah a little more rowdy. Apparently while Brian was off at work for a few hours wrapping things up Isaiah decided he wanted to eat nearly every hour and mess his diaper more than usual. It could be because he's only on breastmilk right now and the hospital would do a feeding or two with formula and apparently breastmilk is less calories so he gets hungrier faster.

We're still working on consitently getting him to eat more than about 60cc's a sitting, but everything will come in time.

Brian's off work now until Monday so hopefully we can get things into somewhat of a groove by then, but we'll see!

Mom and Grandma Hanthorn gave him a bath today and he tried out his swing some too all of which we'll update the pictures with eventually here.

Quickie


Daddy's got to get ready for work, we tried taking a bit of video last night, but when we uploaded it to youtube it was pitch black so we'll try again later, but in the meantime enjoy a few new pix!


We've uploaded a small number of photos from his last hr in the NICU, his car ride home, and his first hours at home.

We made it!!

Well we made it through the first night without much in the way of huge fusses. He actually almost made it until 4am this morning after the 11pm feeding which was good for mommy and daddy's sanity. The first few feedings here he was only taking 60-75cc's compared to the 100cc's he would take from the nurses in the hospital so we were a bit worried, but we're slowly getting the hang of it and he took 90cc's this morning. Now comes the fun part of trying to schedule all of the doctors consultations with the specialists. Besides the normal pediatrician visits we've got 6 other people to see in the next 3 months. The first two biggies being the neurosurgeon and cranio facial guys that work together, and also the hand specialist that will be trying to split his thumbs from his hands at about 3months.

The fun has just begun, but we're just ecstatic that he's home. Despite the lack of sleep we're just starting to experience, both Mom and I feel tons better mood and energy level wise that he's here with us.

The best bonus of last night? His heart and respiratory home monitors that he's on didn't beep a single time last night other than when we turned the machine on!

Brian's got to go into work for a little bit today to wrap some things up he left hanging yesterday afternoon, but he'll be home the rest of the day today and all of Friday.

30 July 2008

The first night, so far...

Well its about 11:30. We've had him home for about 5 hrs now and slowly getting into our routine. He was hysterically hungry at 8 when we had to give him his Zantac and Flonase, but he woke up a full hour early for his next feeding at 11:00. (He was supposed to wait until midnight) And thats where we sit. Dad got the baby monitors working and Mom is finishing pumping and hopefully Izzy sleeps for his 3 hrs this time.

I can totally see why people say we would get no sleep. We thought we weren't getting sleep when he was in the NICU because we were worried about him. Now we won't get sleep because we have to do everything for him. I'm looking forward to the challenges ahead, but how people do this and juggle work at the same time I just don't know right yet. Give me a week or so and I'll claim to be an expert, but for now Rachel and I are fumbling through our first night.

R's Mom is here with us too tonight, so I can't write long, but if we're all up again at the next feeding, there will probably be another little blurb here.

I hope you look forward to delirious 4 am babble!

Heeeeeere's Izzy!

Just a quickie here, but he's finally home with us! Literally only for the last fifteen minutes or so, but we had to share and we can't jump around the house because we're trying to get him to sleep until his 8pm feeding!!!

Film at 11...

27 July 2008

The nursery and today's progress

So in the meantime while we await Isaiah's presence in our home I thought I would post a quick little video of his nursery for those of you who were curious. Its not completely done (or perfectly clean either for that matter) but check it out. We like it, and hopefully Isaiah will too.




As for his progress today he didn't really have any desaturations since they put him on 2 different kinds of nosedrops and an antacid. They're going to run a sleep study on him tommorrow that will check his airflow in/out of his nose and possibly a hi res CT scan of his nasal passages to determine if surgery is the only option.

Oh the fun of it all.

Mom and Dad are doing better today. The last two days have been kind of tough going into the hospital thinking we're taking him home, but then ending up not getting to. Today we knew he was still going to be staying so it was a bit easier, but still hard. We miss our little guy and hope he can come home with us very soon!

Rachel's B-day is coming up on the 5th and all she wants for her Birthday is to have Isaiah home (I wouldn't mind it so much either)

Anyways we've been catching up on our sleep in the meantime so we can be refreshed enough to deal with him and all of the sleepless nights to come.

Oh and I've added another album of pictures here.

26 July 2008

Not ready for primetime...

So Izzy is still in the NICU. He failed his second car seat test, but passed his car bed test. Why is he still there though? When he was sleeping after a big meal (80 cc's!) his SPO2 levels dropped into the high 70's which is not good at all. It wasn't showing any correlation to the heart and respiratory lines which is what our home monitor would be picking up, so he could drop to dangerously low levels of oxygen in his blood without the alarms even going off if we took him home.

The docs want to check a couple things like the effect of nose drops, etc to see if his nasal passages are just inflamed. The other thing that it could be is that with all his other cranio facial problems his bones at the nasal passages may be what is constricting the airflow. If that's the case he'd need rhinoplasty to rework his nasal bones and open things up some. So yeah, yet another surgery he made need. We for sure won't be able to take him home until at least Monday now or possibly longer if it is his bone structure.

Other than that he's doing great. Eating tons, very active and bright and responsive to everything we've been doing. We just wish he could come home soon.

Coming Home Soon!


If you haven't checked the sidebar the picture page is up and running. Here's one of my favorite pictures of him under the Billirubin lights (for Jaundis). He totally looks like he's snorkeling!

Sorry for the lack of updates the last couple days. We thought we would be taking him home last night, but he didn't pass his car seat test (the last thing needed for him to be discharged). Basically he has to be able to sit in his car seat for a full hour without his SPO2 level dropping below a certain point (Saturation of Oxygen in his arterial blood flow) .

He's been laying down all of his time in the NICU so he's got to learn how to sit upright at the 45 degrees of the car seat and learn how to breathe properly.

We test again this morning, and if he fails again they try it with a car bed and he's still got to pass the test in the car bed (which shouldn't be much of a problem) So he should be coming home today.

I'm sure we'll get the updates going here more frequently because we'll have many more sleepless nights. We've actually been trying to bank up on our sleep the last couple nights (if that's at all possible)

23 July 2008

Busy Days

Its been a busy day for all of us. Brian went to work today for almost the full day. Rachel fed Izzy a couple bottles today and spent most of the day at his side. We also had a fair number of people come by the house this evening.

Isaiah's is doing well with his feedings now that he's on the pigeon nipple. He's got a high palette so they put him on the nipple designed for kids with cleft palettes and its working quite well. He took 7 bottles in a row of 50-60cc's which is great.

There are some worries about his nasal cavities being a bit constricted so they're observing his oxygen intake overnight tonight and if he does come home tomorrow or Friday with us he'll most likely be on a ECG/Respiratory monitor for a little while since he may be prone to Aepnea.

I'll be able to catch up more this weekend hopefully since we're both supremely beat from our days and just want to head to bed. I promise there will be more to read here very soon. Its just a matter of finding the time to post it.

22 July 2008

Still searching...

We're still searching for more information about Apert to post here, but in the meantime I've put up a couple links in the sidebar to the left.

Izzy's doing good. He saw the Opthamologist and Audiologist today and they both showed no problems with his eyes and ears. He's eating more now and just got moved from the NICU to the 'Feed and Grow' Nursery wehre they will continue to help train him in on the bottle so he can come home to us hopefully sometime this weekend.

I've got a notebook log of entries ready to go from the past 4 days that I will get posted here when we get a chance. I'm also looking to get a web album set up of some of the pictures we have so far, so keep a lookout in the links folder for that as well

BK

21 July 2008

The story begins..


This blog will be our way of keeping a record of our little Isaiah's growth, surgeries, and general updates over the next few months to years. We hope this will help you all feel connected, from everyone here in Atlanta to our family and friends spread across the country in Wisconsin, Minnesota, Indiana, Ohio and elsewhere.

As many of you may already know, Rachel gave birth to Isaiah Jonathan Kolis at 10:07 pm on July 17, 2008. He weighed in at a whopping 8lbs 14.8 oz and 21 inches long and that was at only 36 weeks! Rachel was brought into the hospital last Monday for high blood pressure and two days later they began inducing labor due to pre-eclampsia. Nothing happened Wednesday, but we tried again on Thursday for a natural birth since her BP was normalizing and Izzy was doing fine. Why have major surgery when you can hopefully avoid it, right? Rachel began pushing at around 7.15pm but was having problems. After about an hr or so of pushing the doctor got the vacuum and tried assisting that way to no avail. The surgery was unavoidable and she had to have an emergency cesarian -- which is how we all began to really first know Izzy.

Rachel was still out on the OR table as the Neonatologist took me aside and explained that Isaiah's fingers were all fused together, as well as all of his toes. He had a high forehead, and a lot of fluid on the head from the labor and vacuum. We had ultrasounds early on in the pregnancy that had shown issues with the hands, but no one could ever tell us anything so we were ready for something, but we had no clue what to expect. Directly after the birth no one was quite sure what it was. Rachel and I were very confused, somewhat sad, but mainly just looking for more answers on what it was. It took until the next day when a geneticist came by the NICU and came to a clinical diagnosis of Apert Syndrome. They're running his DNA through a lab to verify this, but it is most likely what he has and will know for sure in about two weeks.

As of right now he's still in the NICU and we're learning more and more each day.

There's plenty of hope, but a lot of surgery ahead of him in his early years and we'll use this blog to give everyone updates, pictures, and probably more information than you'd ever want to know about our little 'Yoda'.