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...

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.

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!

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.

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

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!