Saturday, December 17, 2011

Just Pictures!

Just some fun pictures from our visits to Santa and Nick and Ben's Christmas program at the Lee Ann Britain Infant Development Center.






Monday, December 12, 2011

Whew!

Well, we just got home from a 2 night stay in the ICU at the local children's hospital....not fun!
Our oldest, Brianna, had some virus last week where she had a high fever one day, slept all day, and developed a slight cough during that time. She still isn't completely better but is back at school at least.

Nikolas, on the the other hand, started with a slight cough on Friday night, he wasn't acting sick and had no fever. By Saturday morning, you could tell he wasn't feeling good. I gave him a bath in the morning and by the time he was dressed and lotioned up, he started getting a fever. He wasn't acting himself and I could tell he was getting sick so I let him sleep the rest of the morning and the first part of the afternoon. He woke up around 2 and I had fed him while he slept (one bonus of the tube!).

Suddenly, his breathing started to sound extremely congested, kind of like when you need to clear your throat really bad. Well he couldn't clear it, he would try and cough but it would still sound the same. You could also tell he was starting to have a hard time breathing through the phlegm.

My dad needed help moving a new ac unit into their house so we headed over there. The whole (5 minute) drive was terrible. I kept trying to suction Nick with a bulb syringe and I would get some gunk, but the back of Nick's throat (where his adenoids are) is very sensitive, so I was also starting to get a lot of blood. So he's screaming, can't breath and can't cough enough to clear his throat....not fun.

My dad convinced us we needed to get him in, now. The local children's hospital has a branch hospital (but not as well equipped, as the downtown one) with an ER so we took him there, mainly because I knew he'd be able to see an actual doctor.

His oxygen saturation levels are at 85% and he is sounding terrible. I had given him ibuprofen earlier so no temp.

They deep suction him, lots more blood and a good amount of phlegm. The doctor decides he needs to be admitted, he knows he going to get worse and he's going to need oxygen and lots more suctioning.

Well in the 2 hour time period we are waiting to be moved upstairs, Nick's fever spikes to 102.7. His heart is racing in the the 200's and his respiration rate is in the 80's....not good.

They bring in another doctor and she decides he needs to go downtown to the main hospital. The transport team was on their way.

This whole time I am having terrible flashbacks of when Nick just had his second lip repair (back in Feb), we bring him home, take him to the same branch hospital and he has his first seizure. And actually, his symptoms are very similar and he ended up having RSV.
I am praying he doesn't have seizures this time....

They do blood work, and chest X-rays and cultures, but nothing turns up. It's just some nasty virus that Nick's little body can't seem to handle on his own.

Amazingly, Sunday evening he starts to do much better, no more fever and he doesn't need the oxygen or suctioning anymore. It seems as fast as the symptoms appeared, they disappeared.

So we spent two nights in the PICU and went home....very unusual. Normally you are sent to the floor first, then maybe the next day you get to go home. But he was doing so well they decided he could go home. Yes!

He's still not himself, very sleepy and cranky, it seems it hurts him to cough. But he's breathing fine and doesn't need oxygen.

I'm just happy we're home. Even more so right now because my Chemistry final is supposed to be tonight and I have not had adequate time to study. But my teacher is great, he said I could take the final anytime before Thursday....so thankful I have an understanding teacher!

BUT, now Ben is getting sick....it's a never-ending battle with the cold season. Hopefully, Joe and I can dodge the bullet though!



Oh, and I almost forgot to update about Carsen. He looks great! No abnormalities and growing perfectly so far. Praise the Lord! We can't wait to meet the newest addition to our family...


Thursday, December 8, 2011

Big day Friday...

Friday is a big day for us. We go for our second level 2 ultrasound to see how baby Carsen is doing. Really, the only reason this is a big deal is because of Nick's recent 'possible' diagnosis of Lenz. From the little information I can find out about Lenz, mother's may not be carriers. Maybe I'm just reading into the wording a little too much but it does say IF....

 Lenz microphthalmia syndrome is inherited in an X-linked recessive manner. The risk to sibs depends on the carrier status of the mother. If the mother is a carrier, the chance of transmitting the mutation is 50% in each pregnancy: males who inherit the mutation will be affected; females who inherit the mutation will be carriers and will not be affected. 




This was taken from www.ncbi.nlm.nih.gov/ so I am assuming is pretty credible.

But the other reason I am a little worried is because this baby is having similar, 'shaky' movements like Nick did. I always thought Nick was having seizures in utero but we could never actually capture it on ultrasound or on the non-stress tests. I am praying it is nothing, that Carsen is fine, but all these things are starting to worry me, even though the first few ultrasounds looked great.



Nick didn't start having seizures until he got really sick and had just had surgery. So I'm thinking he never was having seizures before he was born. The only thing that I can think that the odd vibrating movements were is either my uterus is weird or when you push upward on the bottom of Nick's feet, they start to shake. Maybe that's what is was, and that would make perfect sense because when you push on his feet it only last for maybe 5 seconds which is about the same amount of time the shaking 'episodes' would last.
One of his OT's explained that his feet shake like that because of something to do with his neurological issues.

But if that's why Nick was doing it, and now Carsen's doing it....ugh, I need to stop worrying. I really can't handle much more stress right now. Brianna is sick again this week, possibly with bronchitis or strep. My Chemistry final is Monday, and I CANNOT get sick before that! And Christmas is coming up....

If you've read this far, sorry. It really helps me to get everything out but then be able to go back and see what I've written and re-evaluate.

I've been constantly reminding myself that God is in control. But something else I've recently decided to focus on is that all these trials we go through, all the heart ache and stress, they are actually blessing's from God. I know that seems backward, and it's hard to wrap my mind around it sometimes but He wants us to rely on Him 100%, and not just during the hard times. This thought process comes somewhat from Laura Story's Blessings song. I cannot control anything and I cannot do anything by myself, but with God's help I know we will be just fine, whatever the results.

Please pray for Carsen, for Joe and myself. Oh, Nick is doing great by the way, his eye continues to heal and the week before Christmas they are going to try and put a contact lens in, so we'll see how that goes!

I'll update as soon as I can on Friday after the ultrasound.

Tuesday, November 22, 2011

No longer a CHARGER??

So we met with genetics on Monday. We have a pretty great genetic's doctor that takes plenty of time with us and really likes to do her research.
She does not think that Nick has CHARGE syndrome anymore. She believes he has Lenz Microphthalmia syndrome. Nick has grown a lot the past year and has developed many more characteristics, I guess you could say, that push more towards Lenz.
His teeth are abnormal and he bottom two front teeth are fused to the teeth next to them. He also has camptodactyly, (permanent flexure of some of his fingers) which doesn't really fit CHARGE. And he has quite a few brain abnormalities.

This makes me sad in a few different ways.

First, we won't be part of the wonderful CHARGE family that we have gotten to know so well....although I still plan on keeping up with everyone and staying in touch!
Secondly, Lenz syndrome is an x-linked inherited gene. Meaning he got it from me. Only males who inherit the mutation are affected, females who inherit the mutation are carriers and are not affected.
Thirdly, the chance of this new baby boy having Lenz is 50/50. Just like flipping a coin. So far Carsen (yup that's his name!) doesn't look to have any abnormalities but we didn't see anything on Nick's ultrasounds (except for his cleft lip) until about 28 weeks. I am currently 26 weeks and we will have another level 2 ultrasound mid-december. We're praying he continues to be healthy!
Fourthly, my mother would also be a carrier, and each of my 7 (yes, I have 7 sisters and 2 brothers!) could potentially be carriers. So far, I am the only one that has had biological children. My oldest sister and brother-in-law adopted a beautiful boy last year but I've been the only one passing down the genes so far.
I have a cousin with Mowat-Wilson syndrome and apparently, Lenz and MWS are very similar and genetics is wanting me to make sure my cousin was not just clinically diagnosed with MWS and that he actually had the blood work done. I am certain he has MWS because his characteristics really line up with MWS but they want me to confirm for sure.
BUT, and I guess this is a pretty big but, they are doing further testing for Lenz to be sure. Nikolas actually tested negative for the initial BCOR gene testing for Lenz. But apparently, they only looked at one specific part of the gene. Now they are going to look at every part to see if there are any mutations.
THEN, if they find a mutation I would be tested to see if I am a carrier. I guess since Lenz is so rare they truly do not know if it's completely inherited or if it could be spontaneous.

So at this point we just wait for results, which could take 6-8 weeks. I am a little stressed about this but then I remind myself to trust in God. He's in control and nothing happens that He is unaware of and didn't allow to happen.
But, boy, that can be hard sometimes! Especially with these crazy pregnant hormones....

Just keep us in your prayers please. There is a lot of power in prayer and I realize that more and more each day.
We are so grateful for everyone praying for us all the time!

This is from earlier in the fall but I just love the face he's making!



Saturday, November 19, 2011

Let's get back to normal!

Thank you everyone for all the prayers! They were needed and gratley appreciated. I am sorry i didn't update sooner. His surgery went well, it only took about 2 hours and he had no trouble breathing after surgery either!! Actually, it was the first time he was cleared to go home right after surgery! Although it was late, about midnight or so when we left the hospital, I didn't mind at all! We flew home Friday and again Nick did great! So, Dr. Carvounis removed Nick's right lens. Then he was able to see his retina for the first time since he did the last surgery a month prior. The scleral buckle is doing it's job but he has developed some scar tissue along one of the muscles around his eye which is causing his eye to turn in more towards his nose,called esotropia. He already had this in his left eye but he is able to move that eye around more. So now both his eyes are turning in. There is actually a surgery they can do to correct this but will probably not do in either eye, at least for awhile. And his retina is not completely attached either. He has developed some scar tissue under part of the retina which is pushing the retina away from the back of his eye and not allowing him to see from that angle. If he continues to develop more scar tissue it will continue to push the retina away from the back of the eye. Dr. Carvounis said this happens in rare cases and he would need surgery again to correct it, but the chances of the surgery being successful are slim, due to his age. And whatever would happen at that point would have to be what it is. He doesn't think there is much else they would be able to do. Please pray with us that his eye will not continue to develop more scar tissue. I don't even know how we would manage to get back to Houston again. But for the next month he will health and 4 weeks from this surgery we will have the retina specialist here look at his retina to see if he's developing more scar tissue.

Wednesday, November 16, 2011

Bumpy start

Well things got off to a rocky start so far. Surgery was originally scheduled for 3:00 pm. That means Nick couldn't eat anything after 6 a.m. And clear liquids up until 11:00 a.m. We arrived at the hospital at 2:00p.m. and Nick was already kinda cranky from being hungry. Well, it's getting close to 5:00pm and we've gone through admissions and the initial meeting with the nurse practitioner but we're still waiting and surgery was supposed to start at 3:00 but they said things were already running behind. So finally they tell me that surgery got moved to 7:00pm ?!? What?? Why are they just telling us this? And why isnit being moved? No one can tell me for sure, just things are running behind and for whatever reason Nick was scheduled as an add on so he gets bumped every time there is any emergency. Then 6:30 comes and they take us back to the pre-op area and we meet with the anesthesiologist. Okay, now things are moving along.... or so I thought. Nope, an emergency rolls in right after us and they have to go back first. I am getting so irritated at this point because no one is telling me anything. I have to ask everything, what's going on? What's taking so long? And I'm not getting clear answers either. So we wait, sit and wait. Nick is doing pretty good but occasionally the hunger pains come back and he gets cranky. I don't blame him, I would be screaming my head off but not sweet Nick. He only cried when they put the dilating drops in, and only for a moment. He is really such a good tempered baby and he has the sweetest soul. He finally went back for surgery at 8:45pm. I really didn't think they did scheduled surgeries so late but apparently they do. It's 10:55 right now and he's still in surgery. I'm the last parent left in the waiting area which is hard, but not unusual for us. I am praying everything goes smoothly and he doesn't have breathing issues again but if the surgery takes a long time then he just might get stridor again but I'm thinking positively and praying for the best. I know a lot of people have been praying for Nick and we truly appreciate every prayer. So much.

Flying

So the flight went great! Nick slept the whole time! I was actually reading that kids with ear tubes usually do a lot better on flights than kids without them because they act as a pressure equalizer. So basically their ears don't pop like ours do. I am just so thankful he did so well!

Now for the next hurdle....surgery. Everything with insurance is cleared and we're ready to go on that end. They are not going to be putting a new lens in as far as I know so that kinda stinks. But eventually we hope they will be able to.

Please pray for Nick's surgery today that it goes well and he recovers quickly and that we don't have to stay two extra days either!

Thank you all for your thoughts and prayers!

Trust in the Lord with all your heart; do not depend on your own understanding.

~ Proverbs 3:5

Monday, November 14, 2011

Heading back to Houston

So long story short (for now), we decided to get a second opinion here locally regarding having the original eye surgeon in Houston do the cataract surgery or if there was one here that would be willing to do it. Not that I didn't want Dr. Carvounis to do the surgery again but traveling to Houston is not very easy.
So we wasted almost 2 weeks of waiting to hear back from this second doctor here, and surprisingly we STILL have not heard back from him. What a surprise....

Can you tell I am a little, just a little, irritated?

But I'm sure it's in God's plan's somehow.

So we are headed back to Houston, in a hurry, no less.

We are flying out tomorrow morning. Just Nick and I.  Surgery is Wednesday at 3 p.m.

Nick suddenly had blood kind of pouring out of his ear last Thursday. He has tubes and they think it was an ear infection but the nurse practitioner could not actually see his ear drum so she really was guessing. But we're on an antibiotic, both oral and ear drops.

Please pray for our flight tomorrow morning. I am concerned about how Nick is going to handle the flight. He has never flown before and I really don't know how pressure and ear tubes and no palate mix. Nor anything else Nick has going on really...but I'm praying he is not uncomfortable.

Thanks for thinking and praying for us!


Saturday, October 29, 2011

Another surgery...

So Nick's cataract has not resolved itself. There was slim hope that it would due to the high chance it was because of the silicone oil transfusion they did and not just air getting to his lens. A cataract is a clouding of the lens and it doesn't allow light in so the doctors cannot see his retina. And because they used oil they cannot do an ultrasound to be able to look at his retina either.  So we have no idea what's going on with his retina since surgery, if the procedures worked or if something more problematic is going on.


So he needs another surgery to remove the lens, they aren't even sure if they can put a new one in during that procedure or if he will need another one down the road. His eyes are so abnormal and complicated that everything they do is so intricate and has to be so precise.

And, of course, the doctor doesn't want to do it here and wants to send us back to Houston. I would prefer if the original doctor did the procedure anyways but it's not exactly easy for travel AGAIN to Houston. Joe cannot take off work again so I will have to fly with Nick, alone. Which I would be fine with if #1. I wasn't almost 6 months pregnant and if #2. I had flown with Nick before and knew how he would handle flying.
Plus, financially things are pretty tight and we're praying we can get funding for at least the flights through a local agency that helps with those things.

BUT, we are getting a second opinion first. There is a retina specialist here that used to do almost all of the pediatric retina surgeries here before the doctor that we've been seeing came to the area.
I would love for him to say that he feels very confident that he can do the surgery but I know that because Nick is not a normal case by any means, the chances are pretty low. But we're praying!

We'll find out on Monday for sure when we go to see this doctor. Please pray with us!!

Thursday, October 20, 2011

The WORST 10 minutes of my life...

So Monday Nick had a follow-up with the doctor who performed the surgery. I knew it was going to be painful, for both of us.

I didn't know it would leave a scar on my heart for the rest of my life....

He had to use a speculum to get Nick's eye open, it was still swollen completely shut and I wasn't even able open it with my fingers to put eye drops in. It was so sensitive and tender, of course he started screaming right away. I was holding him the entire time which might have made things harder for me. Mainly because I had a front row view of what was about to happen.
So his eyelids are peeled back and all you can see is tissue, no actual eyeball parts, like the iris and pupil. And then the doctor starts poking around, no big deal, I know it might hurt a little, I'm praying not too much but it will be over soon and everything will be okay....wrong.

Apparently, the congunciva, which is the clear mucous membrane that covers the sclera or the white part of the eyeball (it does not cover the iris or pupil area) was so swollen that it had started to cover the entire eye and grow together over the iris and pupil. This had to be cut to put in the scleral buckle that he had performed during surgery. He said that it was very swollen after surgery and he had a hard time sewing it back together but he was surprised it was still so swollen and actually growing together over the iris.

Here comes the worst part....to be able to look at Nick's retina he had to basically tear it apart.....with sharp, pointy tweezers. It was the goriest scene, it looked like some type of torture tactic performed on enemy spies. Nick was crying like I've never heard him cry before. I prayed that God would take his pain away and give it to me, let him pass out, something...anything....please dear Lord.

The doctor did give Nick quite a few numbing drops and I know that helped but it didn't help me. Here I am holding my baby boy and letting them torture him, just letting him cry. With every part of my being I wanted to push them away and run out of that horrible room. But I didn't, I have quite a bit of guilt from this. I keep trying to remind myself that the doctor knew what he was doing (I pray) and Nick didn't feel much and he really need to look at his eye to really see what was going on and to see how things were looking. But it doesn't take the guilt away.

I kept a poker face the whole time, honestly, I think the nurse was getting queasy. She had to keep looking away. I didn't bother me, the actual procedure, but the torturing my baby boy did...a lot. And I really don't know how Nick didn't pass out... I cried for over an hour after we left the office, I really felt like a failure. Like I didn't do my job as a mommy and keep my baby boy safe. It really was the hardest 10 minutes of my life and I will never, ever, forget it. No matter how much I want to.

As soon as the doctor finished, I held Nick so close and just held him. He fell asleep almost immediately. He slept for 4-5 hours.

Then he woke up happy. Yes, he was happy, he was smiling and acting normal. I was so thankful he wasn't it a ton of pain or crying and I wouldn't know exactly why.

Unfortunately, the doctor also thinks Nick has a cataract now. He said it could be because air got to his lens during the procedure or because of the oil exchange they did during the vitrectomy. If it was because of the air, he said it would resolve itself. But if it was because of the oil then his lens would have to be removed. And if the conjunctiva doesn't shrink back down then it might have to be 'trimmed back' and apparently it doesn't grow back. He said that since Nick is so little, if they did have to do that then his eye would just learn to work with what he had.

We go today to an ophthalmologist here in KC and I'm just praying he doesn't have to be tortured as bad, I know they have to look and he won't like it but I'm praying there's no blood.


 Please be praying for us today, pray for little Nicky, that he won't be in much pain and that some of his eye issues have resolved.


 Here's some HAPPY pictures!!


Sunday, October 16, 2011

Update from surgery....

So it turned out Michigan couldn't get us in for two weeks! So my sister has a neonatologist friend in Houston who recommended a doctor that would be able to do the surgery. She even called him up and made sure with everything else going on with Nick and his eyes that he would be able to. So we headed to Houston Wednesday evening and arrived Thursday afternoon, met with the doctor and he did the surgery on Friday! It was a pretty rough surgery though, what's supposed to only be a 1.5 to 2 hour surgery turned into a 6 hour surgery because Nick's are more sunken in and the especially the colobomas. The doctor said the procedure went well though. And because he was intubated for for song he had some retraction and stridor after surgery and had to stay for two more days in the hospital here. We actually just got out the of hospital today and will be traveling home tomorrow after we meet the the doctor to check his eye again. We won't know if the procedure was really successful for a few weeks because of healing and swelling but he will be monitored by doctors in Kansas City. He is irriated because his eye is completely swollen shut still and he can't see out of it at all right now. But he's back to himself thankfully and we're praying for fast recovery! Thank you so much for all your prayers, they each mean so much!

Tuesday, October 11, 2011

Detached Retina

We went to see a new opthalmologist today and discovered Nick has a completely detached retina. They don't know how long he's had it but there is scar tissue forming which means its been there for awhile and its not good. The worst part is that it's in his good eye, neither eye has significant vision but we believe he can see better through his right one. The retina specialist we saw today, after we saw the opthalmologist, did not feel comfortable doing the surgery because of Nick's age and his coloboma's make the surgery much tougher. So now we are getting ready to go to Michigan for surgery. We are just waiting for a call in the morning to see when they can get us in. I am really just praying it's sooner rather than later as Nick's condition is pretty emergent. I am also praying that he hasn't and won't loose total vision in that eye.
Please pray with us for Nikolas, he's been through so much it just breaks my heart to know that his chances of retaining his vision in that eye are not looking so great. But I know miracles can be done and I know Nikolas has experienced many miracles already!

Tuesday, October 4, 2011

Botox!

I never thought I would so excited to say my son is getting botox! We met with a doctor that specializes in rehabilitation. He was great and really thought that Botox might be perfect for Nick. Since Nick is unable to open his hands all the way and is still in 'baby mode' and wants to clench his fists all the time, the doctor thinks that it will help relax the particular group of muscles that Nick has tightening in. It is not a permanent solution, and if it does work it was to be redone every 4-6 months. It's really a quick and simple procedure but sometimes they have to put the kiddos under general sedation. Hopefully, Nick will cooperate and not need that though!
I am just so ecstatic that he will (hopefully) have functional use of his hands! Since he has such significant vision loss using his hands is key and if he can't do that then things are much harder in so many ways. He really needs to be able to feel his environment and discover new textures and grab things as he wants and not put so much focus into just opening his hand.

His first procedure is November 4 and we will really be counting down the days!

He is also scheduled to see the dentist for the first time on Thursday. I really don't know what they will say about his teeth. They are so unusual. The past couple of weeks he has been cutting teeth like crazy! I think he has about 13 teeth right now, including one that popped through his cleft...this one I am pretty worried about. I really hope it doesn't cause issues with his cleft or give him any more pain. I really have been trying to get a picture of them but getting him to open his mouth is NOT easy!

He also has appointments this month for genetics and opthamology. We are seeing a new opthamologist and are really hoping she can give us some actual insight about Nick's vision and about things we can do. Our last one was 'on the way out' and I don't think she was really trying too hard anymore, unfortunately.

Oh, and we found out it's more than likely another BOY! It was kind of early for the ultrasound and the technician was pretty sure she saw boy parts. It would have been nice to have another girl but thankfully, we won't have to buy any baby stuff! And so far the baby looks healthy, they weren't able to get a good look at the spine but told us that is probably just because of the gestational age. We are still praying this baby is totally healthy and that we can figure out our finances quickly as we (meaning I) still do not have insurance and it's looking pretty grim in that area.

Here is the best video ever! Nick is laughing as his Aunt Anna kisses his hand and makes funny noises! It's very rare to hear him laugh so I am so thankful to have caught it on video!

Wednesday, August 31, 2011

The BIg News

So I mentioned a couple posts back that our family was needing some prayers and that I would explain why later. Well it's later so I guess I should explain. We received the news a few months ago that we are expecting again. A complete surprise, shock, bewilderment, whatever you want to call it. We had decided before Nick was born that he would be our last. We were happy and content with our little family and that's were we left it. I don't need a lecture on where babies come from, as many people have joked about. I know. We have just guessed that God wasn't done adding to our family and that there is someone else missing from our clan.
I read a quote the other day from Woody Allen, "If you want to make God laugh, tell Him your plans."
Yup, it's true.
So obviously you might be able to tell we aren't exactly 'over-the-moon' about having another child (like we should be). For many reasons. Not that we don't think that God's plan is best, we are just anxious over what the future holds and how we are going to handle another little person. Don't get me wrong, I am blessed to be having another child and I will love and adore this baby just like my other 3, but the timing....it seems so wrong!
Our main stressors right now about this pregnancy are #1-how are we going to handle another child when we are dealing with so much and a daily basis with Nikolas. #2-I do not have health insurance, for three reasons. 1) We cannot afford a $600 monthly premium 2) I do not work, I stay home with the kids and I am still taking college courses. 3) I am relatively healthy and if I get sick I can just pay to see a dr. once in awhile if need be and pray I don't have some major medical issue! So we have no way to get insurance as of right now and will have to pay for everything out of pocket, a pocket that is very shallow these days. And #3- since we still do not have an actual definitive diagnosis for Nikolas (we were told the geneticists really only went with CHARGE syndrome because of his hearing loss, which is actually very very minor) we don't know what the chances are that this baby could have some type of health issues. The chances are pretty good that he/she will not, I guess, because we have two other 'typically developing' children but that doesn't make us feel any better. I truly feel though that this baby will be okay. With Nikolas, I just knew something was different, very different but it took until he was born to actually figure out what!
We've had awhile to 'stew' over our new information and surprise and once our initial emotions settled we finally realized, just like with every other circumstance we have had to overcome, that God is in control. We need to trust that He has our best interests at heart and that we do not have the control. Things will fall into place just as they are supposed to. And that doesn't mean anything is going to be easy but since we have given Him control, everything will happen just as it's supposed to. We are praying, a lot. And we could really use your prayers over the next coming months as we continue to trust that God will take care of us and our beautiful family.
Thanks for reading....sorry this is kinda long! Oh and this new little one is due February 28, 2011.

Monday, August 8, 2011

It's almost birthday time!!

Our little Nick will be 1 year old on Saturday! We can't believe it, time has flown by! We will be having a little party for him on Friday evening, so...if you live in the area and want to stop by we would love to have you! Just send me a message and I'll send you our address if you don't already have it.
























Sunday, July 24, 2011

MRI results

So we got the MRI results back and there was some good news and some not so good news. The good news is there are no longer any cysts anywhere in his brain. But the not so good news, his lateral two ventricals are looking larger than normal. His neurologist thinks this could be for 1 of 2 reasons: 1. They are swelling from too much fluid, in which case they would probably need to put a shunt in to help drain the fluid or 2. He brain is developing abnormally and they just look larger but that's just how his brain is. We have to see a neurosurgeon in a couple weeks to do more testing and determine what is actually going on. His neurologist does not think its emergent but he does need to be seen soon. And some more not good news, his pituitary gland is still abnormally small. His neurologist was hoping it would grow or change somehow from his first MRI but there has not been any change. She ordered some labs to be drawn and depending on the results we will have to see an endocrinologist as well. Just two more specialists to add to his list of doctors.
We will now more in the next couple of weeks and I will try and update as often as possible.
Also, I need to ask for prayers for our family right now. We are going through a pretty stressful time (for reasons I will talk about another time) and we need all the prayers we can get. Thanks so much for all the support!!

Friday, July 15, 2011

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!

Thursday, June 30, 2011

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!

Saturday, May 28, 2011

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!

Friday, April 22, 2011

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:




video

Monday, April 18, 2011

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

Monday, April 4, 2011

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!

Tuesday, March 15, 2011

Before and after lip pictures





Before


Sorry....I cannot seem to organize them on here for some reason. But you get the picture-from top to bottom lol

Thursday, March 10, 2011

Home tomorrow!

So the swallow study did not go well at all. He was aspirating, quite a bit. It is unsafe for him to have anything by mouth for now. We are not sure if he's having difficulty now because of the rsv issues or the seizures causing neurological damage or maybe a combination of both. Either way, he has to be fed by a ng (nasogastric) tube for now. They want to put in a gastrostomy tube, which goes through the abdomen into his stomach, but he's been through so much and he does not need anymore stress on his little body. Plus, anesthesiology wants him to be symptom free from the rsv for 6 weeks. They plan to do surgery in about a month. I am still hesitant about doing the surgery in general though. I feel that Nick has had a setback from everything he's going through and I feel that he can recover and return to feeding by mouth, but it will take some time. To me, putting in a g-tube is a permanent solution to a non-permanent problem. Maybe I'm wrong and he will need the g-tube long term but I feel that he deserves a second chance and time to recover from everything he's been through. They plan on doing another swallow study in 6 months, I think I might try and push for another one earlier. I don't want him to loose everything he's learned, from all his oral skills, then have to start all over when they think he's ready. We will work closely with occupational therapy to keep developing his oral skills while he's using the ng-tube and hopefully he won't loose anything he has learned so far. We have been trying to do a gastric emptying test for a couple days but he has too much barium in his intestines from the swallow study to do the test yet. They will try again tomorrow morning to see if they can do it. Otherwise, it's another appointment we'll have to make.
But the good news is we get to go home tomorrow! We are so happy to get out of here and get home and try to get things back to normal before possibly having to go back for another procedure....
Thank you everyone for all the prayers! We appreciate every one.

Monday, March 7, 2011

Are we ever going home?


Well Nick is doing good. I think. His oxygen saturation levels are not good when he's off the oxygen. And last night they had to increase his oxygen to 1/2 a liter. Which is not a lot at all but he was on 1/16th of a liter for a long time. I am sure he needs to be suctioned more, probably deep suctioned too. He is eating a lot better, back up to 5 oz now. We had OT come by and she suggested that we add a thickener to the breast milk along with the formula we are already adding. The formula was for extra calories. So he still likes his milk with pedialyte and combining all these things together is pretty gross. After it's thoroughly mixed it looks like and has the consistency of yogurt. Yum. And I'm not sure if it's just the combination of things or its the pedialyte but parts of it can be chunky and clog up the nipple so it doesn't come out. Then when it does it shoots out like a water gun. Nick doesn't like that and neither do I. I already have to squeeze his bottle harder then it gets clogged and...oh my what a mess! But at least he's not choking on it when he eats anymore, that's amazing! He will have a swallow study done today, well hopefully today. Then we will know more about how much he is aspirating.
Thank you all so much for reading and for thinking and praying for us. It's been tough while in the hospital, we can't wait to get home.

Wednesday, March 2, 2011

Slowly getting there

Nick is doing better, slowly. He has not had a seizure since Monday-yay! The Keppra seems to be doing its job. His breathing is much better as well, he is not laboring to breath anymore. Unfortunately, he has to stay on the oxygen for awhile longer. Every time we try to take him off of it his sats drop to 88 or 89ish. So his bronchiolitis is from RSV. The initial rapid test was negative but the attending doctor said that they have had a couple rapid tests come back negative but the culture came back positive. So at least we know what caused his issues. He started to eat a little last night but this morning is refusing the bottle again....hopefully he is just tired.
On a brighter note, his plastic surgeon came by this morning and said his lip looks great. But it will probably take a little longer than normal to heal just because his body is using so much energy for fighting off infection and recovering from the seizures.
So to be able to go home Nick has to be off the oxygen and eating normally for 24 hours. Hopefully it will be tomorrow, but it's not looking too promising. I am not pushing anything because I want him as well as possible before bringing him home, I want to know he's okay.
It's been hard for Brianna and Benjamin while we've been at the hospital. We try to bring them up here but it's hard for them to be constrained to such a small area and not being able to touch anything! But they are troopers and will bounce back as soon as we get home and are able to spend some time together.
Thanks so much for all the comments and prayers, each one means so much!
Thank you for the continued prayers and hopefully we will get home soon!

Sunday, February 27, 2011

Well Nick is back in the hospital. He was having trouble breathing, and had a slight cough. He actually started having symptoms the day of his lip surgery but they said he sounded fine and he didn't have a fever so they went ahead anyways. So Saturday evening he started having more trouble breathing so we decided to take him into urgent care. His oxygen levels were okay but you could tell he would having trouble breathing so they started him on oxygen. A few minutes into talking with the doctor Nick started to have a seizure. Out of the blue, and it lasted a little less than two minutes. I was so scared, the doctor grabbed him out of my arms and ran into the treatment room where they got ready to give him Ativan if he didn't stop seizing. He stopped shorty after they put him on the table. They decided to transport him by ambulance to the downtown location where they can more readily help Nick as he needed it. After being downtown for awhile they got his breathing somewhat under control but he started to have more seizures that started lasting longer and longer. They do not do anything for a person having a seizure except make sure they don't harm themselves somehow. It is very hard to watch your child helplessly convulsing and there is nothing you can do. After about the 5th seizure which lasted more than 5 minutes they gave him Ativan. It takes a minute or so to work so he continued to seize for close to 8 minutes. We felt so helpless, so vulnerable-how could we just stand here and let this happen to our little boy....it was very hard. They started him on a maintenance seizure medicine but it takes 12-24 hours to fully work so Nick continues to have seizures. Thankfully, though, they are not as long. He has had a couple that he completely stopped breathing and started to turn blue-those are the worst for me. He will have another EEG tomorrow and hopefully we will know the results quickly this time.
He's sleeping a lot and they diagnosed him with bronchiolitis, which is viral. He probably has a little bit of pneumonia which they are treating him for with antibiotics. He still has very labored breathing and sounds very congested but all we can do is give him oxygen and try to make him as comfortable as possible. He looks so miserable though, he's just not himself at all and it's been so hard.
Please, please pray he gets better quickly and that we can get the seizures under control.

Saturday, February 26, 2011



Sorry I wasn't able to update earlier. We had some issues with the surgery and recovery taking quite a bit longer than expected and then we had issues with pain and Nick just not feeling well.
But Nick's surgery went well! He had his tubes done first and surprisingly he had very little fluid in his ears! The doctors were very surprised due to his wide cleft and actually seeing fluid in his ears just a couple weeks ago. The ABR went well also. He did excellent and only has mild low tone hearing loss in his left ear. God is Amazing!
Thankfully, Dr. Kaye didn't use stents in his nose again! Those things were horrible and such a pain to try and clean out. His lip looks amazing! I really don't know how they do it but it really just look awesome! He has tape covering it for awhile so you can't see it very well yet. He has been in quite a bit of pain and with only using Tylenol we had quite a fussy baby for a couple days. We decided to try and add Motrin because you could tell he was in so much pain. He would try and sleep but he would wake up every 20 or 30 minutes because of the pain. But he seems to be better now. We also had issues with desaturating again. His levels were not nearly as bad as before, they were usually around the high 80's, low 90's. We are still not sure why that's going on. My only guess is that he might have a slight cold and that's what's causing it. Hopefully it won't be an issue for long and it will jump back up to normal in a week or so.
He looks so different, he's like a new baby really. I look at him and I have to look again because I don't recognize him! Brianna had a hard time when she first saw him too. I think she was overwhelmed with everything the past few days and she said she didn't want to look at him and that she wanted him his lip to stay the way it was...that broke my heart. But she's okay now and just loves on him like usual.
His hearing is also so much better now! I can tell he is just hearing every little noise and he starts to turn his head more and look around a bit. He's very interested in all these new noises he's hearing!
Before
After

He's such a little miracle baby and God continually demonstrates that to us!
Thank you so much for praying and for the kind words! We are so blessed to have family and friends like you!!

Thursday, February 24, 2011

Surgery Day

Nick's formal lip repair is scheduled for today at 1:00 p.m. We have the OR scheduled for 2 hrs 45 minutes...that's a long time! But he is also getting ear tubes and having another hearing screening done. I am calm and not anxious about anything right now, I am praying I stay that way all the way up until after we get to see him. Joe is a little anxious, he's been having a little bit harder time this time. Last time he was fine but he said it's (the upcoming surgery) has been getting to him for a few days. I think I am more okay with everything because we've kinda been through it before and I know what to expect.
I will update as soon as I can. Please pray for our sweet Nikolas during this time, that his surgery goes well and we have no complications.

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Thursday, February 10, 2011

Negative for infantile spasms!!



His EEG looked normal-yay! I am so happy we don't have to trek down that road! But his neurologist said that sometimes they don't show up if they just started having them....awesome. But I think that Nick has been having his 'fits' for a couple months so we may be in the clear. I really just think he has major balance issues. It's so hard to tell when he can't even hold up his head yet. We just have to watch him and possibly catch it on video if he continues to do it.
He also saw Nephrology on Thursday and they don't seem too worried about the cysts on his kidney's or the shape of them. But they want to do a follow-up ultrasound to make sure the cysts are decreasing and not increasing. His urine test and BMP were normal.
We also got him started on some acid reflux medicine. It hasn't started working yet but his pediatrician said it would take awhile and eventually, hopefully he won't spit up very much anymore. Nick hasn't had a huge problem with spitting up but sometimes when he does he gags on it, I am sure it burns, and I really think he aspirates a lot of times...poor baby. He cries so hard he turns blue and when people see it they are kinda freaked out but I just remind them that he is okay-it happens occasionally.



We also found him some new sunglasses. We originally got him Baby Banz but they smush into his face so much he can't stand them. He doesn't have much of a nasal bridge and his cheeks are so fat it has been hard finding something. The ones we found don't have a band but he hasn't learned how to pull things off his face yet....so they work for now.

Yeah...the gold looks kinda funny :o) But it's the only color the optician had.

We have a full week ahead of us. Monday is renal ultrasound, Wednesday is his cardiology appointment, Thursday is his 6 month checkup and Friday is his PAT appointment (pre-admission testing) for his surgery the following week.

As always we want to thank you for all your prayers, comments and thoughts.
God Bless and have a wonderful weekend!


Wednesday, February 2, 2011

Another issue?



Well we got some not very good news on Monday....well we're not sure if it's good news or bad news really. We saw his neurologist on Monday and she thinks Nick might be having infantile spasms. Apparently, his MRI showed that a certain structure in his brain is abnormal and it increases his chances of having seizures. I am quite frustrated about this, not because of what might be going on but because we were never told this. He had an MRI while he was in the NICU at Children's that showed them this back in August! Why are we just finding this out now? I wish we had known so we could have been watching for signs if he was having a seizure or something else going on. Let me explain why the doctor thinks he might be having them, sometimes Nick seems like he is startling by wailing his arms suddenly in the air, he jerks his arms a few times then gets a terrified look on his face and sometimes he will cry. I've heard of other babies with special needs having balance issues and I thought that maybe Nick just felt like he was falling so I kinda hold my hand firmly on his chest to let him know he's okay. He usually is okay afterwards but I never thought anything else could be going on....if only I knew. He has been doing this for probably at least two months. The doctor also explained that these are pretty serious type of seizure that is usually developmentally destructive. If he is having them he will immediately be put on meds and will be put on a special restrictive diet called a Ketogenic diet, which requires hospitalization initially to make sure he does okay on it.


Please pray for our little Nick.
It's so hard to imagine anything else going on but we know that God has his hand on our little one and is watching over him....

Tuesday, January 18, 2011

Finally...an update!



Sorry for taking so long to update the blog, we have been busy with the holidays and trying to adjust the the cold weather and snow!
Nikolas has been doing great since his first lip surgery. They placed stents in his nose and they were held in by a stitch in each nostril. Well Nikolas managed to pull one side out somehow, or the stitch just broke and it wiggled out. Either way, I had to cut it off of the other one so that he wouldn't pull the remaining stent out. The one that is still in is the important one anyway, it helps hold his nose up and is helping stretch his columella. The stent is not fun, it gets clogged and crusty and I am sure if Nick could find a way to pull it out he would!
He has also been given a diagnosis of probable CHARGE. He actually tested negative for the gene, but we were told that only 60-70% of people who have CHARGE actually test positive for the gene. They said they were leaning more towards the CHARGE syndrome because of the hearing loss. Plus, genetic testing is so expensive I think that they will wait to do further testing until Nikolas develops more or they think he might have characteristics of something else.
Either way, it doesn't matter to me. I just hope that people don't describe Nick as the CHARGE boy or the kid with CHARGE syndrome. No...he is a little boy named Nikolas who has CHARGE syndrome. I don't want his diagnosis to define him, he will have a personality (as we discover more and more everyday!) and that is what will define him.
We have quite a few appointments coming up, including his next surgery for his formal lip repair, on February 24. We also have a cardiology, nephrology, neurology, otolaryngology, plastics and OT appointments in the next few weeks. Brianna also has an annual cardiology appointment next week to add to our madness!
Nick had a great Christmas and we had lots of family come in town so we were able to spend lots of time with our family and Nick got lots of cuddle time with everyone!
He is eating much better these days, except that he refuses to eat his milk without adding Fruit Punch flavored pedialyte to his bottles and being very warm. He is very picky but I am just glad he is eating and gaining weight, slowly but he is up to 13.6 lbs now and his cheeks just keep getting fatter and fatter!