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'.