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 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


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!