So Nick had his follow up MRI today and he did good. They had to sedate him with gas and intubate him so he's a little hoarse sounding and a little groggy but he's pretty much back to himself already.
His therapies (PT, OT, vision) are going well and he can almost hold his head up completely by himself but never for very long because he gets tired quickly. We try and do a lot of tummy time but his OT thinks he has low muscle tone in some of his neck muscles so he will continually have to work against that to get his body to do what he wants.
I am somewhat worried about his feet, they are pretty small and seem to grow very slowly. His neurologist mentioned he might have an abnormal pituitary gland which could cause hormonal problems, we will know more next week.
I can't believe he will be one next month! Time goes by way too fast!

Firsts!

Well I tried to post to the blog a new way and it got all jumble up as some people let me know....sorry about that. Blogger has a way to post from your phone somehow butI won't be doing that again....well at least until they fix whatever issues they have.
Anyways, Nick got his first new teeth a couple weeks ago and the next week he got his first haircut! He looks like such a big boy now! A lot of people tell us he looks a lot like Ben did when he was that little....so cute!

Not much else has been going on except we've had 3 birthday's this past month. First Brianna turned 6! I can't believe my little princess is already 6! Then I turned 26 and Joe turned 31! Ben's birthday is next month and Nick will be 1 in August! Whew! time does fly! It's hard to imagine where we were at this point last year and trying to figure out what was going on with our little Nikolas but God has really led us down a wonderful path and taught us so much and our faith has grown so much stronger because of the trials we have been through.

We can't wait to take the kids and Nick to see fireworks for his first time! He is just going to love them!
Happy 4th to everyone! We hope you have a wonderful weekend!

Long needed update!

Sorry for the long delay in posting! We have been very busy with school ending for Brianna and my semester finals and Nick being sick with a cold etc.
Nick had an ear infection and I am sure a little cold that started to get worse and every morning he has been so gaggy. He will wake up gagging, which leads to throwing up. When Nick throws up some of it usually ends up in his maxillary sinuses which causes more mucus to drain down his throat and in turn that causes him to be more gaggy and causes more throwing up....it's a horrible cycle and it landed us back in the hospital again because he was aspirating and turning purple one morning. They sent us home the next day and figured it is just due to the drainage going down his throat and to give him saline and suction him and hopefully that would help...great. So we've been doing that every morning for the past 2 weeks. It is strange though because it only happens in the morning then he's pretty much okay the rest of the day. He did develop a cough but it seems to be finally getting better.
He also saw neurology and his opthamologist earlier this month, and his pediatrician on Thursday. He is up to 19.9 lbs! He is so chubby :o) I love every inch of his chubbs, actually it looks as if his cheeks are overtaking his face sometimes!
His neurologist also informed us that he is classified as having epilepsy, because of the way his brain is structured and having seizures for more than one day. So we'll continue with the Keppra and hopefully he won't have any more seizures. She said that if he is seizure free for one year then she will consider taking him off of it.
Also, his opthamologist doesn't think there is much change in his vision or the structures of his eye's since we saw her 6 months ago. I think he can see better though. Sometimes when I walk up to his bassinet and he's just laying there looking around he will notice me, of course I don't make any noises and try to see if he is really seeing me or just a shadow. He loves to smile so it's hard to tell if he's smiling at me or if he thinks he sees something else funny. Either way, I just love his smile. Every morning he wakes up smiling, he is such a ray of sunshine!
I can't think of anything else right now, but I know there is much more I need to add. I hope everyone has a wonderful Memorial Day!

New Mic Key button

Nick had his g-tube placed yesterday and they used a mic key button, which is a pretty standard feeding tube they use now. It's pretty small and hopefully it won't get in his way of tummy time or swimming.
He had a rough time with his oxygen levels again after surgery, they had to do a couple breathing treatments and he was on oxygen for about 6 hours or so. He sounds very hoarse, from being intubated but we're not sure if that's why his oxygen levels were low or it was the Fentanyl they gave him. Either way he is better now and we're using roxicet now to help with the pain and that seems to be doing the trick without his O2 sats dropping.
Hopefully we will be going home today, I don't want to say we will be and then we don't cause that would really stink!
Right now we're just working on getting him back up to his normal food amounts and then I'm sure we'll be out of here.
Here's some pics and a video of before the surgery!
Right after surgery:

Please please please don't get sick!

So this past week Ben has been sick with a runny nose and a slight croupy cough.....ugh just like the week before Nick had his last surgery, then ended up having RSV and seizures. We are trying to keep him away as much as possible but that's pretty IMpossible. I think Nick has a runny nose though. It's hard to tell with him because there's no palate to guide the snot down and out his nose, it just drains into his mouth and down his throat. He's been very gaggy this past week and has thrown up a couple times, twice he's thrown up his tube at the same time. But this morning immediately after he ate he threw up quite a bit of bright yellow stuff. It scared me quite a bit, only because he had just eaten. I ended up calling the nurse line and they said he should probably be seen, just in case. So we took him to the Children's ER and he was fine, thankfully. The doctors think maybe he had a stomach bug or the drainage is making his stomach upset. But the yellow stuff was just stomach acid and it's not a big deal that he threw it up after he ate. Thankfully, he's completely fine and we are still scheduled to have his g-tube put in on Thursday. Hopefully we can make it to then without getting sick.
Please pray he doesn't get sick and that the surgery will go well and we will be home in plenty of time for Easter!
Here's some CHUBBY pictures!!


Sleeping with Daddy

Getting so big!

Nick has been doing so well lately! He is eating more now for obvious reasons and has been gaining weight like a sumo wrestler! I am so in love with all his fat little rolls! His last weight was about 18 1/2 pounds....wow! When we left the hospital on March 11 he weighed about 14 1/2 pounds so he's gained 4 pounds! Holy cow, that might be a little much but I think he needed it and he's already starting to hold his head up more and just move around more. He still sleeps quite a bit but he does seem to be awake more often and for longer periods.
We are still scheduled to have a g-tube put in on April 21st. Nick won't be able to have another swallow study for a couple months and having the tube in his nose is not easy. It gets in the way, he gags on it all the time because it 'collects' mucus and such on the tube and it gets pulled out quite frequently. So we will have the g-tube put in and we will continue to work on his oral motor skills and hopefully he won't lose what he has learned so far and will be able to go back to oral feeding before too long.
Here's a picture of some of his rolls!
For some reasons I can't get the right picture to load....anyways here is a half body shot!